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Carers and work final report 2010


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An interesting read for Carers and Professionals alike.

An interesting read for Carers and Professionals alike.

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  • 1. A REPORT FOR BIRMINGHAM CITY COUNCIL CARERS’ COMMISSIONER Carers and work A study looking at barriers and aids to returning to or staying in work,for carers or recent carers, including pointers for the development of a support pathway Lesley Pattenson and Steve Bedser July 2010
  • 2. Carers and Work – a report for Birmingham City CouncilCONTENTSEXECUTIVE SUMMARY ............................................................................................ 7Summary of key pathway pointers ............................................................................. 8 General Services for Carers ................................................................................... 8 Opening Doors for Carers (Crossroads) ................................................................. 9 Reality and Sensitivity........................................................................................... 11 Early Skills Building .............................................................................................. 11 Employment .......................................................................................................... 13 Other factors affecting employment prospects ..................................................... 14 Creative Pathways and Outcomes........................................................................ 14 Other Best Practice Issues ................................................................................... 15INTRODUCTION AND BACKGROUND................................................................... 16 The commission brief ............................................................................................ 16 Pre-existing research ............................................................................................ 16The research methodology ....................................................................................... 16 The carers‟ experience ......................................................................................... 16 Recruiting participants ....................................................................................... 17 Characteristics of the cohort of participants ...................................................... 17 Interviews .......................................................................................................... 18 Findings and analysis ........................................................................................... 19 Employers and employer support agencies .......................................................... 19THE CARERS‟ RESPONSIBILITIES AND IMPLICATIONS FOR WORK ................ 20Caring responsibilities .............................................................................................. 20 Parent-carers of children under 18 ....................................................................... 20 Transition to adulthood ...................................................................................... 21 Parent-carers of adult children .............................................................................. 22 Carers of partners ................................................................................................. 23 Carers of parents or other older relative ............................................................... 23 Planning for and following death of cared for person ........................................ 23 Multiple caring roles .............................................................................................. 24DIVERSITY AND PERSONAL CHARACTERISTICS OF THE CARER AND THEIMPLICATIONS FOR WORK ................................................................................... 25 Gender.................................................................................................................. 25 Partnership status ................................................................................................. 25 Lone parents/ carers ......................................................................................... 26Lesley Pattenson and Steve Bedser 2
  • 3. Carers and Work – a report for Birmingham City Council Relationship breakdown .................................................................................... 26 Residency in relation to the cared-for person ....................................................... 27 Age ....................................................................................................................... 27 Disability (of carer) ................................................................................................ 27 Sexual orientation ................................................................................................. 28 Ethnicity and country of origin ............................................................................... 28 Language.............................................................................................................. 29 Faith and culture ................................................................................................... 30BARRIERS TO AND / OR FACILITATORS OF POTENTIAL FOR PAID WORK ..... 31 Recognition and acceptance of the carer role ...................................................... 31 Attitude to caring ................................................................................................... 32 Motivation for seeking / retaining paid work .......................................................... 32 Fears and concerns about juggling caring and work responsibilities .................... 34 Good organisation of work and home / domestic life ............................................ 35FINANCIAL FACTORS IMPACTING ON CARERS GETTING OR STAYING INWORK ...................................................................................................................... 37 Maximising income – to work or not to work? ....................................................... 37 Benefits advice ..................................................................................................... 38 Carer‟s Allowance ................................................................................................. 39FORMAL AND/OR ALTERNATIVE CARE ARRANGEMENTS ................................ 41 Statutory service provision .................................................................................... 42 Social Services.................................................................................................. 42 Children and Family Services ........................................................................... 42 Domiciliary care................................................................................................. 42 Day centres ....................................................................................................... 43 Education and school holiday schemes ............................................................ 44 Transport ........................................................................................................... 45 Health services.................................................................................................. 45 Direct Payments ................................................................................................... 46SUPPORT FOR CARERS ....................................................................................... 50 Formal support ..................................................................................................... 50 Carer‟s Assessment.............................................................................................. 50 Carer support agencies ........................................................................................ 51 Carers‟ Emergency Response Service – CERS ............................................... 52 Birmingham Carers‟ Centre ............................................................................... 53 Funded carer support schemes......................................................................... 54 Carer and parent-carer support groups ............................................................. 55 Condition specific support groups ..................................................................... 56Lesley Pattenson and Steve Bedser 3
  • 4. Carers and Work – a report for Birmingham City Council Multiple support agencies and networks ............................................................... 57 Informal support networks .................................................................................... 57 Family ............................................................................................................... 57 Friends .............................................................................................................. 58 Faith and cultural groups ................................................................................... 59MOVING TOWARDS WORK-READINESS ............................................................. 61 Access to information ........................................................................................... 61 Libraries ............................................................................................................ 62 Internet .............................................................................................................. 62 Informal sources................................................................................................ 63 Via service providers ......................................................................................... 63 A one-stop shop ................................................................................................ 64 Guidance and support .......................................................................................... 65 Careers advice .................................................................................................. 65 Mentoring or life-coaching ................................................................................. 65 Confidence building........................................................................................... 66 Language support ............................................................................................. 67 CV development and job applications ............................................................... 67 Other support .................................................................................................... 68 Unpaid work/ Volunteering .................................................................................... 68 General voluntary work ..................................................................................... 68 Volunteering in a workplace setting................................................................... 69 Unpaid work placements as part of a training course........................................ 70 Education and training .......................................................................................... 70 Previous educational attainment ....................................................................... 70 Training ............................................................................................................. 71 Guidance on accessing training ........................................................................ 72 Adult Education Centres and courses ............................................................... 73 Open University (OU) ........................................................................................ 74EXPERIENCE OF SUPPORT TO GET WORK, OR WORK-READY....................... 75 Opening Doors for Carers (Crossroads) Project ................................................... 75 Job Centre Plus (JCP) .......................................................................................... 75 Experience with other agencies ............................................................................ 79 Ingeus / Work Directions ................................................................................... 79CONSIDERATIONS FOR CHOICE OF EMPLOYMENT FOR CARERS ................. 81 Type of work sought ............................................................................................. 81 Educational assistants ...................................................................................... 81 Counselling and therapeutic roles ..................................................................... 81Lesley Pattenson and Steve Bedser 4
  • 5. Carers and Work – a report for Birmingham City Council Other caring roles.............................................................................................. 82 Professionals..................................................................................................... 83 The ideal employer ............................................................................................... 83 Openness about caring responsibilities and employer response ...................... 84 Local to home.................................................................................................... 85 Part-time post .................................................................................................... 85 Hours and start and finish times ........................................................................ 86 Term-time working in school hours ................................................................... 86 Shift working ..................................................................................................... 86 „Zero hours‟ contracts........................................................................................ 87 Trial or probationary periods or short term contracts ......................................... 87 Flexibility to take time off for crisis events or planned appointments ................. 88 An understanding manager and supportive colleagues .................................... 88 Good organisational and employment policies .................................................. 90 Staff support ...................................................................................................... 91 Home working options....................................................................................... 91ALTERNATIVES TO DIRECT EMPLOYMENT ........................................................ 93 Agency and locum work........................................................................................ 93 Self-employment as sole trader ............................................................................ 93 Setting up a small business .................................................................................. 94 Home-based contracts for services ...................................................................... 95 Informal economies and creative opportunities .................................................... 95 Social enterprises ................................................................................................. 96INFORMATION GATHERED FROM EMPLOYERS AND EMPLOYMENT SUPPORTAGENCIES............................................................................................................... 97 Support for carers seeking employment ............................................................... 97 Job Centre Plus (JCP) ...................................................................................... 97 Ingeus ............................................................................................................... 97 Care through the Millennium - Case Study of Best Practice ............................. 98 Working Neighbourhoods Fund......................................................................... 99 Disability Employment Solutions (Birmingham City Council) ........................... 100 Pertemps People Development Group............................................................ 100 The Learning Hub ........................................................................................... 101 Groundwork West Midlands ............................................................................ 101 Fircroft College of Adult Education and Newman University College .............. 101 Freshwinds ...................................................................................................... 101 ASDA (Barnes Hill).......................................................................................... 102 Support for carers starting self-employment ....................................................... 102Lesley Pattenson and Steve Bedser 5
  • 6. Carers and Work – a report for Birmingham City Council Business Link .................................................................................................. 102 Business Insight - Birmingham Central Library ............................................... 102 Support for carers already in employment .......................................................... 103 Trade Unions................................................................................................... 103 Statutory Employment Rights for Carers ............................................................ 103 Other background information ............................................................................ 104 Carers UK Report – Who Cares Wins ............................................................. 104 Crossroads Report – Juggling Work and Care ................................................ 104AREAS FOR FUTURE INVESTIGATION AND DEVELOPMENT .......................... 105 Strategic approach to developing carer support ................................................. 105 Networking and information sharing ................................................................... 105 Direct Payments ................................................................................................. 105 Collective approach to developing businesses or home-working opportunities .. 105 Parent-carers of children with Autism Spectrum Disorder .................................. 106 Faith groups ........................................................................................................ 106APPENDIX 1: OTHER RESEARCH ....................................................................... 107 “Carers‟ aspirations and decisions around work and retirement” Department of Work and Pensions Report 290 – Summary....................................................... 107 “Employment Support for Carers” - September 2009 ......................................... 110 “Understanding workless people and communities: A literature review” ............. 111 “Provisions for people with strokes in rural communities”, 2009 - The Institute of Public Policy Research report for the Rural Commission ................................... 111APPENDIX 2: RECRUITMENT .............................................................................. 112APPENDIX 3: PARENTS VIEWS COUNT MEETING - GROUP DISCUSSION,FEBRUARY 2010 ................................................................................................... 113APPENDIX 4: INTERVIEWEE PROFILES ............................................................. 114APPENDIX 5: LINES OF ENQUIRY....................................................................... 117APPENDIX 6: ORGANISATIONS PROMOTING THEMSELVES AS OFFERINGSUPPORT TO CARERS AND PARENT-CARERS ................................................ 119APPENDIX 7: THE CONSULTANTS ..................................................................... 120 Lesley Pattenson ................................................................................................ 120 Steve Bedser ...................................................................................................... 120Lesley Pattenson and Steve Bedser 6
  • 7. Carers and Work – a report for Birmingham City CouncilEXECUTIVE SUMMARYThis report highlights the very significant challenges facing a carer as they attempt tobalance their caring responsibilities with employment. The report draws evidencefrom a series of interviews conducted with carers from Birmingham in early 2010,and showcases a number of interventions from a range of agencies. In particular thereport provides evidence that has implications for Birmingham City Council in itsstrategic intent to promote the economic well-being of carers, informs the future roleof Crossroads and its Opening Door for Carers project, as well as capturing rich datathat has more general implications for carers‟ services.Carers are a diverse community, with differing individual needs. As such, there is noreason to expect that the support needs for a carer seeking work will be any lesscomplex, and this highlights the need for personalised support packages, sensitive tothe individual circumstances of the carer (and cared for). Our interviews with carershave already highlighted how, all too often, misjudged interventions can createbarriers for carers seeking to become economically active.Carers come from a range of socio-economic backgrounds and have differing skillsand experience. However, it is useful to broadly categorise carers seeking work asfollows:  Carers who have been economically inactive for a considerable time, with little formal work history and few formal work-related qualifications.  Carers who have an economically useful skill, qualification or profession, but have taken a break from working to prioritise caring responsibilities and now wish to return to the world of work.  Cares who recognise that their current caring responsibilities prohibit a conventional employment role, but who wish to be economically active in some way.  Carers who are in employment, but who need support to balance their caring responsibilities alongside their contractual commitments.  Carers who do not wish to become economically active. For example, some carers might be at or near to retirement age and do not view employment as an appropriate option.Clearly, these categories are neither exhaustive nor mutually exclusive, but it sets auseful framework for prioritising action to meet the needs of carers.In the course of our research we identified some common barriers to employment:  Lack of work related skills  Lack of work related qualifications  Lack of formal work experience  Low confidence/self-esteem  Onerous caring commitments provided for limited availability for work  Lack of confidence in the availability, quality and reliability of alternate care provisionLesley Pattenson and Steve Bedser 7
  • 8. Carers and Work – a report for Birmingham City Council  Inability to prioritise action to return to work above immediacy of caring responsibilities  Lack of support and advocacy to guide people back to work  Lack of access to advice about financial consequences of starting work (in respect of benefits) and consequential cost of alternate care arrangementsWe also looked at the pathway for carers seeking to (re)enter employment andidentified a number of options for them to consider:  Status Quo – any other options are too challenging or unfeasible with current caring responsibilities  Move towards work-readiness through training and personal development  Gain (additional) work-related qualifications  Identify potential employers who are able to offer flexible terms and conditions which match caring responsibilities  Identify alternate caring arrangements which generate more opportunity for economic activity  Identify opportunities for home working  Identify opportunities for self-employment  Identify opportunities for volunteeringOur research prompted a series of observations which we have recorded as pathwaypointers. They are highlighted in the text at the relevant part of the report, but forease of reference, they are grouped together in broad categories and summarisedbelow.Summary of key pathway pointersGeneral Services for Carers Need for better co-ordination There appears to be a large number of organisations which offer services to carers, either as part of their core role, as an element of their service provision to a particular target audience (e.g. BME community associations) or indirectly through a type of service provision which is beneficial to carers, amongst others. Consequently there is a complex network of advice, service and support that is difficult to map and even more difficult to navigate. There is a need for systematic review that would enable ease of access and cross-referral according to individual needs, but there is also scope to re-think carer related investment. We pose the question, is it better to fund (at a relatively low level) a diverse range of organisations to programme carers into their work stream or is it more effective to commission a single, carer-focussed service that has diversity at its heart? In any event, some form of widely accessible directory or database would be a good place to start, but it needs to be proactively used rather than being a list that sits on a web page, waiting for the right people to find it. Need for specialist expertise There is an undoubted need for a central repository of information and expert guidance, specific to carers. This service should recognise the limitations of itsLesley Pattenson and Steve Bedser 8
  • 9. Carers and Work – a report for Birmingham City Council own expertise and be adept at making referrals to other specialist organisations in other fields where appropriate, but maintain responsibility for the progress of the individual through regular contact and review. The expert role could be combined with an advocacy role, championing carers and challenging as a critical friend in the wider pool of employment related services. Protocols to be in place for:  Sharing and updating information between organisations  Sign-posting to other agencies  Referral to other agencies  Joint briefings and training on carer related issues Provision of forums for friendship, mutual support and information exchange There is a hierarchy of need amongst the carers we have interviewed that starts with some very basic issues. Social isolation and lack of confidence are common factors and tackling these is an early prerequisite if the ambition of economic activity is to be realised to its full potential. Many carers use such forums as a first point of access for information. Where such services exist, they need to be better publicised. Where they do not, they need to be developed. Routine referral to Job Centre Plus (JCP) Carers’ Champions The current policy framework for JCP provides a significant resource for carers who are contemplating employment, or who are working fewer than 16 hours per week. Whilst this prioritisation remains in force, routine referral to JCP Carers‟ Champions would seem to be an obvious element of any pathway at an early stage in the support of any carer meeting these criteria. (JCP cannot support carers who need advice and support with a caring related issue that affects their current employment; they can be directed to ACAS [Advisory, Conciliation and Arbitration Service], CAB [Citizens‟ Advice Bureaux]), trade union or employment law specialist. Tailored, high quality advocacy Each of the carers we interviewed had their own personal story. If the ambition is to maximise economic outcomes for the caring population, the skills required to get the best out of carers as a group will be complex. Services directly concerned with carers and employment need to engage with each individual carer and rapidly understand, empathise and advise them, according to their own needs, caring responsibilities and family circumstances. The service providers will also need to be able to interface with other agencies and be effective advocates, promoting high awareness for the complex needs of individuals and the carer population as a whole. Inevitably, there will be occasions when services fail to match themselves sufficiently closely to the needs of the individual. In such circumstances there will be the need for encouragement, support, tenacity and diplomacy. A gold standard service is required for maximum success.Opening Doors for Carers (Crossroads)Instinctively, we are certain that there is an important and pre-eminent role forOpening Doors for Carers (ODfC) in the process of enabling carers to take upLesley Pattenson and Steve Bedser 9
  • 10. Carers and Work – a report for Birmingham City Councilemployment. We observe dedicated, compassionate individuals who makestrenuous effort with very modest resource. Our concern is to make suggestionswhich might enable the most effective use of limited capacity and createopportunities to help more carers in more substantial ways. Need for greater awareness of service Very few of our interviewees had heard of or engaged with ODfC. Where appropriate, many of them were referred to the service at the end of the interview process. We have come across numerous occasions where ODfC would be the obvious agency to link carers into, and we would recommend a systematic review of how ODfC promotes itself to carers and carer related organisations. Potential to be pivotal It is obvious to us that, suitably visible and sufficiently resourced, ODfC could play a pivotal role in the pathway for carers, facilitating important outcomes for individuals. We would recommend a review of the purpose of the service and a rethink of what elements should be directly provided by ODfC and which should be sourced from third parties with particular expertise. ODfC should retain an oversight role to ensure quality of offer and supportive redress when things (often) don‟t go according to plan. Need for redesign (of pathway and function) There is a need to map the pathway(s) that might enable the transition of carers towards employment. These will not be linear, and will often require several strands to operate in parallel. If the pathway could be codified on paper (or as an e-resource) it would provide a valuable tool for ODfC, their client group and ancillary services alike. There are two aspects of pathway which operate in tandem; firstly the steps any individual will need to take to achieve their aspirations and goals and secondly the sequence of organisations which will need to be engaged to advise and support them on this journey. ODfC are in a strong position to provide this support through a personalised case management system which aims to enable and empower the carer to meet their individual goals. Need for greater clarity about purpose and strategic fit It is our view that if ODfC attempts to provide a total, one stop service, it will not achieve its full potential in two material ways. Firstly, an all encompassing service provision would severely limit the number of individuals who could be assisted within available resources. Secondly, it could compromise the quality of the service, by operating outside of its core area of expertise. We recommend that ODfC re-orientate itself away from „doing‟ activity and towards a strategic, enabling role. It might also be necessary to offer differential levels of services according to the potential of an individual to achieve and sustain employment. ODfC might adopt a „triage‟ approach, allowing for the prioritisation of clients with the most potential for economic activity, signposting others to alternate services, better matched to their needs. It occurs to us that the advent of a new worker, combined with the finalisation of this report, creates an opportunity for a fundamental review of ODfC within a rigorous business planning framework. This process would need to be supported by a robust critical friend.Lesley Pattenson and Steve Bedser 10
  • 11. Carers and Work – a report for Birmingham City Council It is relevant to add here that carers have significant support needs not just in seeking work but in sustaining work too. It is critical that agencies that see themselves as having a role to play in this field do not exclude carers already in employment from their remit. We know from our interviews that maintaining work in the face of conflicting pressure from caring responsibilities is a key concern of many.Reality and Sensitivity Sensitive direction about aspiration versus reality check Some carers might aspire to an employment arrangement that might not be feasible. This could be in terms of type of role, degree of flexibility or level of remuneration (amongst others). Good advice to carers will include the ability to sensitively challenge unrealistic expectations and give positive direction to more credible employment scenarios, or direct them to alternatives such as home- working, freelance arrangements, informal economies or voluntary work. Proper audit and advice about whole household’s financial circumstances A significant number of carers are in receipt of Carer‟s Allowance and/or some other form of means tested benefit. Additional complications arise when the cared for person is in receipt of benefit combined with the consideration of additional income from other members of the same household. We do not profess to understand the detail of the issue, but it is readily apparent that, at an early stage, there is a need to properly audit the income of the entire household, so that carers can make informed decisions about how many hours to work and what level of income to aspire to through a „Better off‟ calculation. There may well be circumstances where the net change in household income is too low to justify a move to employment (although for many of our interviewees, increased income was not the most important motivation for seeking work) or, worse still, where the household income might decline. Careful attention should be given to the cost consequence of sourcing additional, paid caring support to substitute for the carer when out at work. Develop appropriate ways of talking about the death of the cared for person (before and after) In some cases, the death of a cared for person might be the event that makes employment a feasible option. Whilst recognising the obvious sensitivity of this issue, it would appear that sometimes, sensitivity may have morphed into paralysing taboo. There is a need to create a culture that finds appropriate ways to talk about the death of the cared for person, both in advance and after the event. To ignore the issue only serves to undermine any progress that a carer might want to make.Early Skills Building Confidence The issue of confidence and self-esteem affects carers in a general way and has the capacity to affect more than just their employment prospects, for example,Lesley Pattenson and Steve Bedser 11
  • 12. Carers and Work – a report for Birmingham City Council securing better services for the cared for person and improving their own mental health. Many of the services targeted at carers address the confidence need of their client group either directly or indirectly. It is certain that many carers who have the potential to be employed exclude that possibility as a consequence of their low confidence and low self-esteem. Any service seeking to support carers into employment should recognise this and, in tandem with a service that sets out to support more motivated individuals who have presented with an aim to seek employment, set out to build confidence amongst a wider group (possibly targeted at demographic priority groups) at a pre-employment readiness stage. Advocacy Some of the carers we interviewed identified the dilemmas faced in employment against a back drop of significant caring responsibility, either as an employee or a job applicant. There will be occasions when the advocacy of a third party could materially assist in the negotiation of more flexibility in reaction to changing circumstances or from the outset of an employment relationship. Such advocacy also has an important role to play with employment support organisations that might not have expert knowledge of the issues affecting carers. It may also be crucial in securing additional or alternative support for the cared for person in order to release the carer‟s time to pursue training or employment. We recommend that advocacy is a function central to any service supporting carers in or into employment. Basic information We identified that there were often crucial gaps in the knowledge of carers about some very basic issues. In tandem with this, we observed a lack of consistency in the application of the Carer‟s Assessment and variable experience in following through the outcomes of any individual assessment whether for themselves, or the cared for person. It is unlikely that, in the absence of minimum standards of basic support, a carer would be in a position to seek to make the challenging transition from full-time caring into some kind of employed role. The need to cover the expense of any pre-employment activity The financial circumstances of carers are often extremely modest. Incurring cost of any kind, prior to increased income through employment, is likely to create an insurmountable barrier. Carers need to be supported to identify ways in which any pre-employment expenses are met. We have evidence that some carers have realistic (in terms of their ability and potential) aspirations to obtain qualifications that would secure employment (e.g. NVQ Level 3 to become a classroom assistant) but lack the resources to complete the courses that would achieve such qualifications. Given that such courses cost hundreds, rather than thousands of pounds, we see the potential to pilot a scheme that gives affordable, interest-free loans to carers that can be paid back in a manageable way once in employment. Such a scheme should have relatively strict criteria to ensure mutual success. The provision of a loan should be contingent on a realistic assessment of a likely successful outcome and, perhaps, should be targeted to demographic groups where the achievement of employment would be more likely.Lesley Pattenson and Steve Bedser 12
  • 13. Carers and Work – a report for Birmingham City CouncilEmployment Need to identify flexible employers The carers we interviewed reported a hesitance to disclose their caring responsibilities during the process of recruitment, fearing that they might be discriminated against, with one interviewee citing actual examples of such discrimination taking place. There is the potential, through a systematic piece of work, to identify (perhaps larger) employers that have the capacity to accommodate the flexibility sometimes required by working carers1. A number of potential flexible schemes were identified ranging from zero hours contracts, term-time working, trial periods, late starts, condensed weeks (full-time hours in four working days), opportunities to catch up missed time by varying hours or taking some work home. Actively promoting examples of good practice would give carers the confidence to apply to those employers, safe in the knowledge that some level of awareness already existed in the employing organisation. Opportunity to develop good practice check list In tandem with the above, we think that a good practice check list should be developed, so that employers have a clear understanding of the potential needs of their employees. The ability to promote good practice would be helpful in removing the pressures from a carer who faced the need for support from their employer at the moment of crisis. Transparent policies and procedures, already in place, would greatly assist both employer and employee, as well as enabling the carer to make an informed judgement about the suitability of an employer at the pre-employment stage. Potential to develop an Employers Index, based on Stonewall model We note the success of the Stonewall Diversity Index, which has transformed the workplace environment for LGBT (lesbian, gay, bisexual and transgendered) employees over a few short years. Blue chip companies and other major employers now compete for the accolade of being ranked in the top 100 employers. We see the potential for a similar scheme to transform the work prospects of carers either, in a modest way within the Birmingham economy, or, to greater effect, through the stimulation of a national model, perhaps in partnership with a national carers‟ organisation. Ensure CERS (Carers Emergency Response Service) registration early on It is readily apparent that CERS offers a robust service that provides very significant support to carers and could ease the fears of those in or contemplating employment. Not all of the carers that we talked to were aware of, or registered with the service. We recommend that this should be considered at an early stage of any individual pathway. We would also suggest a review of eligibility for support to extend the circumstances in which support was provided so that short-term cover where the carer is suddenly incapacitated at home could also be offered.1 We have been advised that the terms of the European Union Working Time Directive allow a degree of flexibilitywhich may help accommodate the needs of carers; some employers may not be aware of this.Lesley Pattenson and Steve Bedser 13
  • 14. Carers and Work – a report for Birmingham City CouncilOther factors affecting employment prospectsCaring responsibilities often run alongside other factors that affect the employmentprospects of an individual. This generates additional complexity that should be takeninto account. Such factors include: Lone parenting A number of the interviewees were single parents. While presenting further challenges for the carer wanting to work, additional routes to support into employment may also be open to these carers as a result of their lone parent status, and these should be exploited where they exist. Disability Similarly, disability may impose both restrictions and opportunities through any training or employment support initiatives targeted at people with disabilities; many of the interviewees had significant health problems of their own. Childhood transition In particular, for carers of children, we recommend that in parallel with assessments for childhood transition of the cared for, a separate assessment is made of the needs of the carer. Childhood transition is a critical juncture that will have impact on the employment prospects of a carer. For some, it will make seeking employment more feasible if caring responsibilities can be reduced through the young adult securing more independence through college or work themselves. For others it will make sustaining employment more challenging, with the imminent withdrawal of schooling (and by implication respite time for the carer). For yet others, it could generate novel opportunities. For example, we see the potential to develop the concept of dual employment for parent and cared for young adult. Many of the parents we talked to had responsibility for an autistic child. We can envisage circumstances that would create meaningful employment for both parent and child with the merit of the parent being on hand in the same workplace in the event of unpredicted emergency. Assessment and advice on the implications and potential for the carer should therefore be integrated into the childhood transition support package.Creative Pathways and Outcomes Not a straight line – some things need to happen in parallel It should not come as a surprise that, given the complexity of individual caring situations, a linear design of a pathway into work would be inappropriate. Different people will need different interventions, at different times. It will not be unusual for a carer to benefit from several different strands of support at the same time. Sometimes employment is not the appropriate outcome and carers may benefit from sign posting into other directions There will undoubtedly be occasions where a carer might present seeking employment but, upon closer inspection, employment might not be the appropriate outcome. It should be the goal of supporting organisations to empower the carer to identify the most suitable outcome for themselves and to signpost accordingly. To attain work, a period of study may be required, or it may be more appropriateLesley Pattenson and Steve Bedser 14
  • 15. Carers and Work – a report for Birmingham City Council to establish self-employment. There is the potential for this to conflict with some employment support agencies if they are rewarded on the basis of job outcomes. Expert agencies, such as ODfC need to be vigilant that carers are not overly directed into work and seek to rectify the commissioning environment if the commissioning structure works against the best interests of carers. Early and frequent review will ensure ongoing success and provide a structured, supportive framework We frequently came across individuals who were highly motivated to seek work, but, by their own estimation, were easily knocked off track by the day-to-day reality of their caring responsibilities. Carers seeking employment need early and frequent review in the context of a supportive coaching and mentoring relationship with a third party. This creates the potential for realistic goal setting and ongoing encouragement to make progress towards work by organising this support through a casework management system.Other Best Practice IssuesA number of issues were identified in the course of the study which fall outside thescope of any pathway supporting carers in or into work, but which would benefit fromthe attention of relevant service providers and commissioners.  Developing awareness of carers‟ issues and services within BME community specific services.  Particular complex and challenging needs of carers who are asylum seekers and refugees as well as migrant European nationals who may experience cultural and/or linguistic barriers as well unfamiliarity with national and local systems and structures.  Particular complex and challenging needs of carers who have English as a second (or third) language.  Lack of a consistent approach to Carer‟s Assessment and subsequent follow- up.  Variable experience of Direct Payments. Many carers told us about negative experiences generating a significant level of mistrust. However, we also recorded some extremely positive examples of how Direct Payments have benefitted carers and cared for alike. There is potential for carers to be recruited to deliver paid care to others through the scheme  Sustainable alternate caring arrangements. This is a dominant issue that dramatically constrains the ability of carers to make regular commitments outside of their caring role. In particular, we noted the impact of closures of day centres on carers of adults, and the increased caring responsibility for parent-carers during school holidays. A more systematic and concerted effort to provide holiday schemes for children with special needs would widen the employment opportunities for their parents.Lesley Pattenson and Steve Bedser 15
  • 16. Carers and Work – a report for Birmingham City CouncilINTRODUCTION AND BACKGROUNDThe commission briefThis report was commissioned jointly by Birmingham City Council and Birminghamand Solihull Crossroads Care in late 2009. We (Lesley Pattenson and Steve Bedser)were appointed and work started in January 2010. A prime objective of the reportwas to gain „a clear understanding from the carers‟ perspective of what carers needin order to get back to work, highlighting barriers‟. We were also asked to mapservices already in place to help carers; identify support systems that need to be putin place; gather employers‟ perceptions of employing carers and be aware of bestpractice in supporting carers into employment, both locally and nationally.The report also builds upon and significantly expands some of the themes identifiedin the tender documentation; specifically a briefing report prepared for the ServiceDirector for Policy Strategy and Commissioning.In subsequent Steering Group meetings we were asked to concentrate on the carers‟perspective and the breadth of our research changed to accommodate the differentemphasis that Job Centre Plus had placed on carers in December 2009.Pre-existing researchA web search revealed a number of related studies undertaken by the Department ofWork and Pensions (DWP), but there appears to have been little focus by otheragencies on supporting carers or recent carers back to work.The most comprehensive is a detailed qualitative survey undertaken by theUniversity of York for the DWP2. This study covered broadly the same areas as thisstudy, plus retirement plans, but did not explore in as much depth, the sort of supportwhich would help people return to or stay in work. The work was undertaken in 2004and published in 2005, prior to, but perhaps contributing to, the development of theGovernment‟s National Carers‟ Strategy. Their key findings were very consistent withthe ones found in this study. Two other studies also drew very similar conclusions.Summaries of the reports mentioned are reproduced in Appendix 1.The research methodologyThe carers‟ experienceA qualitative research methodology was adopted in which a cohort of carers wasidentified and interviewed in order to identify and explore carers‟ experience in allaspects of their lives which impacted upon their ability to obtain or retain work.2 Report no. 290 “Carers‟ aspirations and decisions around work and retirement”, Hilary Arksey, Peter Kemp,Caroline Glendinning, Inna Kotchetkova and Rosemary Tozer, 2005, ISBN 1 84123 896 1 Pattenson and Steve Bedser 16
  • 17. Carers and Work – a report for Birmingham City CouncilRecruiting participantsParticipants were recruited through a variety of carer related organisations, servicesor networks. We made direct contact with a number of organisations including carerprojects supported by Birmingham City Council (BCC) and attended a number ofmeetings to present the study, seek support from participants and in some cases,make direct contact with carers. (See details of recruitment process in Appendix 2)While it had been anticipated that some sources would lead to multiple potentialparticipants, who could be brought together in a focus group in a familiar setting, thisdid not materialise. (However, we were present at a meeting organised by ParentsViews Count, at which a break-out group discussed „employment, experience andexpectations‟, from the perspective of the parents/ carers. The bullet points chartedreflect many of the themes explored in more depth within this report, and can befound in Appendix 3.)Effort was therefore concentrated on securing support for individual interviews. Therelatively small numbers coming forward who met the criteria for the study may beindicate that large numbers of carers are not actively interested in returning to work,or it may simply mean that they were not interested in taking part in the study, forwhich no material recompense other than travel expenses was offered.The research focus was always intended to be qualitative, with the intention ofcovering a spread of experience. However there was no attempt at random or othertype of sampling to recruit interviewees, so the spread was achieved by targetingcertain agencies, in particular to fill gaps. The spread across type of carer, workingor not, ethnic and faith background and area of residence is impressive as follows.Characteristics of the cohort of participants27 carers and recent carers were recruited to the study. 10 were working in either fullor part-time posts or in self-employment and the remainder were interested inseeking work. Some had only recently ceased their last job, others had not workedfor over 30 years.Participants were from a wide spread of areas across Birmingham, having postcodesas follows: B3 x2, B8 x2, B10, B12, B13 x2, B16 x2, B17, B18, B19, B20 x2, B21 x2,B24, B26, B27, B31 x2, B32, B72, B74, B75The gender breakdown of 22 women and 5 men reflects the gender imbalanceamongst carers in general so the relative infrequency of male participants was to beexpected.There is a predominance of participants in older age brackets with some coming upto, or past normal retirement age: 30-39 x6, 40-49 x6, 50-59 x10, 60-69 x3, 70-79 x2Targeted approaches through a number of channels failed to recruit a carer in theage range 18-293. (Although this is a deficit in the cohort, it should be noted that3 The study did not attempt to recruit carers still at school since they are accessible and supported throughexisting routes including usual support for further education, training and employmentLesley Pattenson and Steve Bedser 17
  • 18. Carers and Work – a report for Birmingham City Councilseveral participants had started caring while still at school and their experiences arereflected in the report.) This suggests that younger carers are either accessingtraining and employment support through the many channels that already target thisage range, and/or they are less likely to be connected into the various carer supportnetworks and agencies which led to the recruitment of many of our cohort.Half (13) of the participants had some disability, illness or condition which potentiallyrestricted or impacted the nature of potential work they could undertake. While thisseems high, bear in mind the skew to older age groups.In terms of self-defined ethnicity, nationality and faith group, there was a goodreflection of diversity, with 18 White, 3 African, 3 Asian, I Chinese, 1 Caribbean, 1mixed heritage; 21 being British and the others having nationalities or dualnationalities including four from European countries and one from Hong Kong. Therewere 6 Muslims (2 converts); I Sikh, I Baha‟i, I spiritualist, I non-believer and 17Christians including 12 Church of England, 2 Methodist, 1 Roman Catholic, 1Pentecostal and 1 not stated.Seven of the participants were currently caring for more than one person andvirtually all the interviewees had substantial caring responsibilities in terms of hoursand the level of support needed by the cared for person(s). All but one lived in thesame household as the main cared for person.Of 16 parent-carers, 6 cared for 1 child, 3 cared for 2 children, 3 cared for adultchildren, one cared for child and partner, 2 also cared for an older relative and 1 wasa parent-carer of both an adult and children as well as siblings; 7 cared for partners(2 deceased; one same-sex), 5 for parents (2 deceased). In addition, several parent-carers had also cared for additional relatives in the past, mostly deceased parents.InterviewsAll interviewees selected an alias to protect their identity and signed a consent formfor use of the material. Appendix 4 gives a brief pen portrait of each interviewee.Information was collected using a loosely-structured interview on a one-to-one basiseither in person or over the telephone. All interviews were recorded bar one.The broad areas covered in the interviews included: Personal and family background Details about the cared for, and the caring role and responsibilities of the carer Support services, paid care, Carers‟ Assessments and Direct Payments Work history and aspirations Training, education, voluntary work Steps taken, if any, to progress to paid work or remaining in work Barriers to work, sources of information, aids to starting or remaining in work Financial issues, benefits advice, professional support Informal support networks and sources including family, friends and faith groups Awareness and experience of key sources of support including Carers‟ Centre, Opening Doors for Carers and Job Centre Plus Experience of work, good and bad employment practice or innovative and creative approaches by carers and employersLesley Pattenson and Steve Bedser 18
  • 19. Carers and Work – a report for Birmingham City CouncilSee Appendix 5 for question prompt maps elaborating potential lines of enquiry. 4Findings and analysisDuring the research process, emerging themes were fed back to a selected group ofusers and stakeholders, who confirmed that our findings reflected the generaldirection of their expectations and experience.The main findings from the research are sequenced in the remainder of the report.Many of the findings and recommendations are drawn from or illustrated by directquotes from interviewees. Implications from the findings are extracted as „pathwaypointers‟ which include a number of more general messages to come out from theresearch. Inevitably, in establishing issues for informal carers, many factors relatingto the statutory or funded care of the cared for person, (or more often, the lack of it),also emerged. Where relevant they are highlighted in this report, as inadequacies informal care are a major barrier to carers being able to undertake a work role.5The first section of the findings relates to the personal characteristics of the carers,their family circumstances and their caring responsibilities, and as such cannot beinfluenced by the pathway. However, such factors may be useful in determiningtypes of carer who should be targeted or prioritised, or who need additional specialistor specific input to complement the general pathway.The second section looks at a range of factors which help or hinder a return to work,including attitudes to caring, motivation for working, financial impact, existing andalternative care arrangements, and formal and informal support for the carers.The third section looks at moving towards work readiness including throughvolunteering, training and education. It identifies the sources of support andinformation on returning to work known to or accessed by the carers and theirexperiences, good and bad, of using them.The fourth section looks at considerations of choice of employment and alternativesto direct employment. This includes the experience of carers in seeking work andthose in, or recently in work, and highlights good and bad practice exhibited byemployers.Employers and employer support agenciesTo complement the direct interviews with carers, a series of meetings was held, inperson and by telephone, with a wide range of agencies concerned with employmentand employment training. In addition, contact was made with employers and otherthird parties with an interest in employment circumstances (e.g. trade unions). Theoutcome of this research is summarised in the final section of the report.4 Not all areas were covered depending on whether relevant to the carer‟s life circumstances.5 In particular, a significant section on Direct Payments is included because they offer huge potential to releasecarers so that they can work.Lesley Pattenson and Steve Bedser 19
  • 20. Carers and Work – a report for Birmingham City CouncilTHE CARERS‟ RESPONSIBILITIES AND IMPLICATIONS FOR WORKCaring responsibilitiesBy definition, a carer‟s immediate restriction on work is the responsibility of caring foranother person. There are therefore implications for work depending on who thecared for person is, what their needs are and what the demands may be in thefuture.A distinction can be made between those with ongoing indefinite caringresponsibilities e.g. those caring for someone with a chronic but not terminalcondition or an adult child with special needs, those where the role may alter (e.g.parents of children as they get older) and those who will inevitably experience acessation of their caring responsibilities, where the cared-for person is a terminally illpartner, or an elderly parent. (e.g. Following her mother‟s death, one ex-carer wasnow seeking work for the first time in over three decades.) Although potentially withthe highest possibility of returning to paid employment, such carers may be reluctantto plan for life following bereavement and though referred to cautiously by some, itwas not explicitly explored due to the sensitivity of the topic.Some transitions can be accurately anticipated (e.g. child leaving school) andplanned for in terms of the carer returning to work, and others (death) are a littlemore unpredictable in terms of time-scale.Pathway pointer In exploring potential for paid work, there is a need for a range of options and solutions for carers each of whom is individual with a unique set of circumstances, constraints, skills and aspirations and each of whom needs a tailor made support pathway.Parent-carers of children under 18Some conditions are apparent from birth or diagnosed pre-school, others manifest inproblems which may not be diagnosed for years, often leaving parents „in limbo‟, notknowing what is wrong, unable to make plans and possibly unable to access formalsupport.“In the early stages, after my son was diagnosed, I didn‟t know how he was going to be fromone day to the next, so to be able to commit yourself to a job would have been extremelydifficult, it really would. I couldn‟t have contemplated having a job because of not just hiscare needs, but the emotional strain of dealing with it.” LauraPathway pointer It may be unrealistic to expect parent-carers of children to work in the early stages of recognising, understanding and adjusting to caring for a sick or disabled child or one with other special needs, whose priority will be getting the correct services and support in place for their child.Lesley Pattenson and Steve Bedser 20
  • 21. Carers and Work – a report for Birmingham City CouncilWhile children are at school, there are hours in the day when the carer couldpotentially work, but this is also the only time they may have to themselves, toundertake leisure activities, go to support groups or undertake domesticresponsibilities that they cannot do when their children are back home.“Some carers of older people seem to think that parent-carers aren‟t carers like they are,because you have to care for your children anyway, so [caring for your children] was a bitdevalued. They go to school so your respite is when they are at school, regardless of thefact that you might have to spend the whole night awake with them.” LauraTransition to adulthoodThis transition to adulthood may present new possibilities for their parent(s) to work.When a child leaves school there are various options – going to college, into work,day-care in an adult facility, supported living away from home, a residential setting,or simply staying at home 24/7. Some carers saw the transition following the end ofschooldays as a positive step for the child to develop alternative support andpotentially independent living, giving them the opportunity to return to or extend paidwork, albeit recognising that they would still have to be in a job that allowed them torespond to the needs of their child if needed.Vera has a teenage son with autism whose needs are currently preventing her from working.“I‟m hoping he will go to university, whether he would cope or not, I don‟t know. I hope he willincreasingly become more independent and take it from there. I‟ve got a friend with adaughter at university, she still has to be ready, she can‟t switch off. Again, it limits the kindof job you can do, I definitely can‟t go back to teaching unless it was very few hours.”Other carers saw it as a time of greater dependency as, without school providing abreak, or the prospect of any viable alternative which they could imagine, theypresumed they would become full-time carers for their adult child living at home,indefinitely.Yee doesn‟t know what will happen in three years time when her son, who has learningdisabilities, has to leave school at 19. She thought she might in fact need to be at homeeven more for him.“You can‟t go out at 9a.m. to get to work, you could do a year ago because he was at schoolbut you can‟t now, once you get into the adult system it‟s a nightmare, but hopefully, theseyounger parents won‟t put up with it, because they‟ll be asking for Direct Payments,”MargaretParent-carers of children still in school are a more accessible group than many othercarers, since they can be reached via schools which obviously know which childrenare statemented/have additional support. The Council already provides transitionalsupport using a recently developed „Transition Pathway‟ tool 6 to review options forthe child from around the age of 14, but this focuses on the child‟s needs and doesnot specifically include any consideration of the opportunities presented for the carer.This is a missed opportunity to encourage carers to start planning how to maximisethis potential by for example, starting a two or three year training course at day6Kate Race, Transition Development Co-ordinator, Birmingham City Council – Pattenson and Steve Bedser 21
  • 22. Carers and Work – a report for Birmingham City Councilclasses, or remote learning opportunities such as the Open University (OU), on-line,part-time or correspondence courses in readiness for future work.However, it must be remembered that the best laid plans are subject to the ongoingand changing needs of the cared for person.Mary‟s son started at a specialist education college “I assumed I would have more time tocomplete my studies, get a placement and accreditation and a part-time job, butunfortunately it doesn‟t seem to be working out at college either.”When Ellie‟s son left school he went to college for 2 years but it was way beyond him and hehad six months off during this period due to illness when she had to care for him 24/7.Pathway pointer Childhood transition support services need to be linked into the carers‟ pathway, and include specific identification of carer aspirations and sign-posting onto support to help them explore opportunities to return to or extend work if desired.Parent-carers of adult childrenUnless the adult child has a terminal condition, this is often a static situation, withanticipated years of caring ahead and no foreseeable change in caringresponsibilities.Ellie, 52, has a 27 year old son with severe learning difficulties, She cannot see any changesin the care or support her son will need in the foreseeable future and as her husband has nointention of retiring, her commitments to her son, which are her priority, are likely to continuefor many years to come, potentially way past her own retirement age. She hasn‟t worked orhad any training in 30 years yet would love to work. The only solution she can see is toaccess training to develop computer skills e.g. in web design or desk-top publishing, whichshe could use to work from home.Louise cares for her daughter who she hopes will go to a college for people with specialneeds when she is 16 in 2 years time, but beyond that Louise is uncertain what the futurewill hold and anticipates that she is likely to remain living at home.Louise also supports her elderly mother who lives locally and whom she sees most days,helping her with hospital visits and general support. As an only child any future additionalsupport her mother needs will fall to Louise to provide. Her husband is due to retire in 5years time and could offer more support but by then Louise will be in her mid-50s. She wouldnevertheless love to do some part-time work.Pathway pointer If a carer aspires to return to paid work, opportunities and support needs to be designed round the limitations and demands of this ongoing caring role or reducing the need for the carer to provide support. (See formal and alternative care arrangements).Lesley Pattenson and Steve Bedser 22
  • 23. Carers and Work – a report for Birmingham City CouncilCarers of partnersMost of the partners cared for had a condition with an onset later in life so the carerhad already had considerable work experience, which they could then adapt. Asthey had become the sole breadwinner, most of these in the cohort had found waysto maintain the family income while also providing significant care for their partner.Pathway pointer Such carers may be reasonably well qualified and experienced plus be highly motivated to maintain work and so a relatively small input of support may generate a high proportion of positive outcomes.Carers of parents or other older relativeSome carers had picked up the care of their parent, aunt, or grandparent as therigours of age had affected them, but notably, several had also had lifelong caringresponsibilities where a parent had had mental health problems.Maxine‟s mother had paranoid schizophrenia since before Maxine was born; Maxine caredfor her mother (and younger siblings) from the age of 9, 40 years in all until her death a fewmonths ago. For the past 20 years Maxine has been the sole carer, looking after her motherevery day as well as looking after her own family. Her mother developed early dementia,then had a stroke 6 years ago and needed 24 hour care so she moved into Maxine‟s home.Maxine could not consider work before her mother died because she was caring full-timefrom 6 – 2a.m. daily. “It would have been impossible but now I really want to do something.”Planning for and following death of cared for personThis is a very sensitive subject, which both the cared for and carer may be veryreluctant to talk about, being particularly careful not to let the cared for person knowthey are taking steps to prepare for life after their death7. The national organisation„Caring with confidence‟ runs programmes for carers in Birmingham8. Although itincludes sessions on how caring fits with other aspects of life, and on maximisingincome, this does not appear to go as far as how to seek paid work. Furthermore,the course includes an optional extension to the programme with an additional fivesessions for carers of people nearing end of life‟ but doesn‟t appear to specificallylook at support and planning for carers to flag up the possibility of looking at trainingor other development activities in preparation for return to work.Pathway pointers An opportunity for planning for life after the cared for‟s death should be available if requested, but perhaps not promoted too actively except in the context of an in- depth personal review where appropriate sensitivity and support can be applied. Omega, who developed „Caring with confidence‟ and have the expertise in delivering successful training courses for carers, could be encouraged to develop an optional programme extension for carers wanting to return to paid work.7 Conversation with provider of the courses8, Omega, the National Association for End of Life Care, 0800 849 2349Lesley Pattenson and Steve Bedser 23
  • 24. Carers and Work – a report for Birmingham City Council“Now, my mum‟s died, they‟ve offered me to go to CRUSE, but I don‟t need that, I go to seemy mum at the cemetery twice a week, but I would like to work. I know some people leave ita year or two after someone‟s died, but I want to get back, I want to do something. “I was onCarer‟s Allowance and I expected it to stop after my mum died, but they sent me a letter tosay that I could have the Carer‟s Allowance for two months; that they didn‟t expect you to goand look for a job straight away, but no-one‟s been in touch to say, „Your mum‟s died now,would you like some sort of help?‟ I‟m not on any benefits now, and I‟m just forgotten about.There must be quite a few people like that, when the caring comes to an end, we don‟t reallyget support, whereas if you‟ve been signing on for 12 months they say, „Would you like to goon this training course?‟ and encourage you.” MaxinePathway pointer After the death of a known for cared person, a referral to Opening Doors or to another co-ordinating group could be generated (in conjunction with the DWP) which could check whether the ex-carer needed any help, and sensitively offer to signpost to financial review, counselling or support, training, work review etc. This offer should be wider than just a pathway to work, but could link to the Job Centre Plus as a conduit, regardless of whether the person was signing on as unemployed or seeking benefits.Multiple caring rolesThe opportunities are even more limited for carers whose caring responsibilities arefor several people, particularly where they are of different generations.Mary cared for her late mother since her schooldays, has looked after several terminally illsiblings and three children with special needs, the youngest of whom are now approachingadulthood. She has nevertheless been studying hard in order to fulfil her aspiration of paidemployment in a few years. “I‟ve had a very long term plan for some time really, my life, mymovement in life has been very much determined by caring responsibilities, and I‟m notcomplaining but it sometimes alarms me. It‟s always overshadowed by having very loftyresponsibilities at home and that‟s what dictates my moving into work”.Lesley Pattenson and Steve Bedser 24
  • 25. Carers and Work – a report for Birmingham City CouncilDIVERSITY AND PERSONAL CHARACTERISTICS OF THE CARERAND THE IMPLICATIONS FOR WORKGenderThe participants interviewed were predominantly women, reflecting the genderbalance of carers in the community. The men were mostly caring for a partner orparent. Being the main carer of a child remained women‟s role in the cohort.Yee thinks that her husband would approve of her trying to get paid work so long as she wasavailable to take care of her son; they see her primary role as that of mother and carer.Asked whether her husband would be supportive if she said she wanted to prioritise goingback into paid work Shazia said: “He‟s not really interested so long as his dinner is on thetable when he comes home from work.” So long as she fulfils her responsibilities as wife,mother and carer, although he wouldn‟t be particularly supportive he wouldn‟t block it either.This was quite a common response; so long as it didn‟t affect their lives, men werereported as not caring whether their wives worked or not. Equally they may notunderstand the barriers and reasons why their partners are not making progressobtaining work.“My husband has a male outlook on things – he can‟t understand why I just don‟t get on withit, he doesn‟t appreciate all the stress surrounding it, he thinks a good idea if I just got onwith it”. VeraPathway pointer Female carers in common with non-carers need the support of their family if they want to go out to work. Additional support in securing this may be helpful.Partnership statusQuite a lot of the interviewees who had partners stayed at home as full-time carers.The need to maintain the role of bread-winner mitigates against partners being ableto share care or even to offer crisis care in an emergency, which in turn impacts onthe work prospects of the primary carer. (By definition, those caring for a partner didnot have the option of their assistance).Christine‟s eldest son had a combination of communication and behavioural problems froman early age. His nursery frequently called her to fetch him early. “Me and my husband tookit in turns to go and fetch him. We were both called into the office by our companies, and told„you‟re going to have to do something about this‟. In the end, because he was the mainbread winner, we took the decision that I had to give up my job.”My husband is in a position to continue working full-time for the foreseeable future andwishes to do so. He‟s supportive in emotional terms but can‟t help in practice in the event ofa crisis with our son during the day as he is at work.” EllieLesley Pattenson and Steve Bedser 25
  • 26. Carers and Work – a report for Birmingham City CouncilPathway pointer Families are likely to prioritise safeguarding the employment of the higher earner, often resulting in the primary caring role falling to the woman even where there are good intentions of shared caring.Many carers reported that their partners were supportive in emotional terms, andsome also played a practical role in caring as well.“My husband used to look after my mum a lot as well, he was excellent, he‟d finish work, orbecause he‟s got his own business, sometimes he‟d not go in till 12, he‟s quite flexible, so helooked after her.” MaxineHowever, some partners were reported as playing no role at all in caring for theirchild although they were financially supporting their partner so they could be theprimary carer.Lone parents/ carersIn contrast, there were a number of single female carers who were surviving onbenefits sometimes topped up with very low paid part-time work. Many of these weresingle parents of young or adult children with special needs. The lack of support athome was a significant constraint on their ability to work. This also applied to singlepeople caring for parents.Pathway pointers Carers with supportive partners who were able to share some of the caring role could be more likely to be able realistically to seek or sustain work. Where there is a partner supporting the family the financial imperative to work was often secondary to the carer‟s desire to „get out of the house‟ and do something other than be a carer. Single people put a higher emphasis on the need for money. (See also motivation to work) Some „back to work‟ programmes are targeted at single parents. The pathway needs to identify which carers also fit this category as it may open up additional or alternative support opportunities for them.Relationship breakdownThe strains of caring for someone within the family can also place immense andsometimes irretrievable pressures on relationships. Several carers reportedtemporary or permanent breakups because of it.To try to juggle both caring and working, Christine‟s husband “Also changed his job to try toaccommodate our life, but we were like ships in the night, when I came home he‟d go towork, so we were never able to sit and talk through our problems, or have a nice timetogether. Our oldest was very very demanding. The combination of anxieties about my sonalong with the problems at work all got so stressful at home that my husband and Iseparated for a while.” They later sorted out their problems and had their second child (whoalso turned out to have special needs).Lesley Pattenson and Steve Bedser 26
  • 27. Carers and Work – a report for Birmingham City CouncilPathway pointer Employability will not be enhanced by avoidable strains on relationships, so the pathway needs to help people look at the whole situation including work-life balance, additional support available, and the knock-on effect of training or working on the whole family.Residency in relation to the cared-for personVirtually all the carers interviewed lived in the same household as the person theywere caring for; one that didn‟t recognise that a change in living arrangements mightsoon be needed. This could suggest that there is a greater limitation on work for co-residents than those living independently from the cared for person, since only onehas appeared in the cohort.AgeThe age of the carer was not necessarily an indicator of the person they were caringfor or of their desire to return to or remain in paid work. Several older carers currentlyworking expressed a need to remain in work as long as possible for financialreasons. However, where carers were not in work but were nearing the end of whatis usually considered to be „working age‟ then realistically their chances of returningto work may be lower than those of younger carers. Conversely, carers who havebeen caring since their schooldays may have accrued little work experience andneed additional support to get them onto the pathway to work.Sharina, 36, cares for her son with ASD (Autism Spectrum Disorder) and her visuallyimpaired aunt. She has been caring continuously since the age of 9, when her father diedand she took on the main responsibility for looking after her older severely handicappedbrother. She missed a lot of school and was frequently investigated by truancy officers eventhough they knew the situation at home. She was offered absolutely no help as a youngcarer by the school or social services. Her education suffered badly as a result.Pathway pointers The pathway may need to help older carers look for self-generating schemes of paid income, identify employers sympathetic to older employees and promote non-paying alternatives providing stimulating and rewarding activities outside the home and caring role. The pathway may need to consider the pros and cons of supporting younger carers inexperienced in working but with many potential years ahead of wage earning, against resources invested in getting older carers who may be better qualified and skilled to get back to work for a shorter period.Disability (of carer)Although not a quantitative survey, it was noticeable that half the carers in the cohortreported disabling conditions themselves ranging through bad backs, depression,asthma, arthritis, diabetes, autism, to complications following surgery. Some of theseconditions in themselves presented limitations to seeking or maintainingemployment.Lesley Pattenson and Steve Bedser 27
  • 28. Carers and Work – a report for Birmingham City CouncilSeveral of the carers approached during the recruitment process who werediscounted because they did not meet the criteria of seeking work, said that this wasbecause they were disabled themselves.Pathway pointer Some „back to work‟ programmes are targeted at disabled people. The pathway needs to identify which carers also fit this category as it may open up additional or alternative support opportunities for them.Sexual orientationOne participant was openly gay; sexual identity was not explicitly asked for but mostof the rest of the cohort were in or had had heterosexual relationships.Alastair cares for his male partner. Since he worked for an agency providing services to gaymen, his sexual orientation was not an issue for him in his workplace. “It‟s totally unique, I‟mvery privileged, I don‟t know what it would be like if I was in a public sector or blue chiporganisation whether there would be potential discrimination, it might not be an issue at allbut it‟s something I‟ve not even had to think about here.”However, the majority of gay, lesbian or bisexual (LGB) carers seeking or working inother work environments, who are not already out, potentially face having to „out‟themselves by explaining the nature and significance of their relationship to thecared for person, in order to also explain the implications of their caring role on theirwork, and this creates a situation of „double jeopardy‟.Pathway pointer Additional support, guidance, advocacy or referrals may be needed for lesbian and gay carers in this situation, as well as, where available, access to other LGB carers. 9Ethnicity and country of originAs well as white, black, Asian and mixed heritage British participants the cohortincluded people from European, Irish, African, and Chinese ethnic groups who hadmoved to the UK. Other than any pre-existing barriers or restrictions experienced bysome ethnic groups seeking work in common with non-carers, ethnicity did not seemto impact other than through its associations with culture or language.Two carers were identified through direct approaches to cultural supportorganisations (Chinese and Somali). Three more relatively recent migrants emergedthrough the wider recruitment processes. Three of the five carers concerned hadarrived in this country with the special care and support needs of the cared forperson already diagnosed.9 This work should therefore be considered in conjunction with the contemporaneous study of lesbian, gay,bisexual and transgendered carers by the LGBT Consortium for Birmingham City Council, completion expectedsummer 2010.Lesley Pattenson and Steve Bedser 28
  • 29. Carers and Work – a report for Birmingham City CouncilA unifying feature of this group was very inadequate information about basic servicesand support for the cared for person, themselves as carers or indeed any othersupport they could access e.g. for their other children. Several had floundered sincearrival and although all had had limited contact with statutory services they appearedto have been very poorly served.Amie arrived in Birmingham in 2004 from Africa via another European Union country with her6 year old son with behavioural problems. She said that when she first came to England shedidn‟t realise she could get childcare (but her English [as her third language] was very poor)and contextually she most likely meant child benefit. Many of the things she said in herinterview reflected that she was relatively new to the country and had not yet recognised orfound her way around all the different systems and services.Anna, whose husband had a stroke two days before the birth of their first child, said “Whenthe visa came up, we had a legal representative who did the paperwork and fought for us, Iwouldn‟t have known how to deal with it, but that was via friends, not via services. The goodthing was that before his stroke, my husband was working with the Pensions Service andafterwards his line manager contacted me and told me about child benefits and child taxcredits because I didn‟t have a clue.”Pathway pointers In establishing an effective pathway, close links need to be developed with immigration, asylum seeker, refugee, cultural and new communities support services and groups, to ensure that there are links to general carer support organisations and specifically into the carers and work pathway.10 It should not be assumed that people, particularly those who are new to this country, understand about different agencies and extra help may be needed to clarify the different organisations involved. (This is good practice regardless of language or length of residence.)LanguageProblems in accessing support and information are obviously exacerbated whereEnglish is not well spoken or understood.Both the Chinese and Somali interviews were conducted through interpretersbecause these carers were not yet competent in English. The latter was working in ajob which required little communication. There are obvious limitations on the scopeof work available which is conducted in languages other than English, particularly inthe smaller minority groups, and may be exacerbated by an absence of a culturallybased commercial infrastructure and a cultural lack of acceptance of carers‟ needs.Because of her lack of English language Yee agreed that work would have to be with theChinese community and that she would look for jobs in China town, with Chinesebusinesses, or supermarkets. However, in a catch 22 situation she feels that the Chineseculture doesn‟t yet appreciate or recognise the needs of carers. So, while she feels she islimited to Chinese businesses because of the language, she also believes that Chinese10 If the pathway is set up correctly, it should in turn signpost sideways when other information and support needscome to light.Lesley Pattenson and Steve Bedser 29
  • 30. Carers and Work – a report for Birmingham City Councilbusinesses would not employ her because she is a carer and could not understand oraccept that she has to put the needs of her son as her first priority.Pathway pointers When English is not the first or even second language, service providers need to be very careful that information provided has been clearly understood, and if necessary provide extra help or advocacy to support them in accessing it. Direction to appropriate language support or ESOL classes (English for Speakers of Other Languages) will be an important part of the pathway for people whose first language is not English. In turn, providers of ESOL and related courses need to understand the limitations on carers in terms of timing, availability, absenteeism and cancellation at short notice etc. Alternative means of delivering language support such as befrienders and communication practice volunteers who can work with carers at home, on line or on the phone may need to be explored. Other carers might themselves be able to be matched up to fulfil these roles.Faith and cultureSome cultures are perceived as being more supportive and understanding of issuesof disability and caring than others and their attitudes towards working women vary.Mahmood, a British born Asian, has provided emotional support to his mother who has longhad mental health problems but since she has had a stroke he has to do absolutelyeverything for her. Although originally living in a large extended family all siblings, nieces andnephews have left and take no interest in him and his mother. Mahmood felt that there wasa cultural expectation by Social Services staff that Asian families stuck together and did notunderstand that the rest of the family were not involved in caring decisions or support.Pathway pointer Stereotyping might lead to people making assumptions about alternative or additional care available to (in particular) Asian carers seeking work and should be avoided by ascertaining each individual situation.It seems that there is very limited information available to carers from the Chinesecommunity, due to limitations of the Chinese Carers‟ group support role and becauseof the language barrier in accessing other sources of support and information.Pathway pointer Because of the relatively self-contained sector, there might be potential to do an innovative piece of work with the Chinese business community in conjunction with the Chinese Community Centre and the Council funded Carers Support scheme based there, to try to improve understanding and create some work placements or opportunities for carers.The potential support available through faith and cultural networks was explored inthe interviews; see faith and cultural groups.Lesley Pattenson and Steve Bedser 30
  • 31. Carers and Work – a report for Birmingham City CouncilBARRIERS TO AND / OR FACILITATORS OF POTENTIAL FOR PAIDWORKRecognition and acceptance of the carer roleIt may be some time before carers recognise or acknowledge that in taking on someor all responsibility for looking after another person, that they have become a carer.“It‟s only the last four years I‟ve classed myself as a carer, isn‟t that what a son or daughteror friend does? So I didn‟t see myself as a carer. When my mum was ill, she‟d ring the GPwho would say, „Ask your carer to bring you up to the surgery‟, and mum would say, „Ihaven‟t got a carer‟, and the GP would say, „Yes you have, Maxine‟, and she‟d say, „No,she‟s my daughter‟. It was the social worker who told me that I was a carer, four years ago,she was doing an assessment for my mum, and asked if I‟d ever had a Carer‟s Assessment.My mum said „She‟s not the carer she‟s my daughter‟ and the social worker said, „No, you‟rethe carer‟. That was the first time I had anyone to talk to.” Maxine, carer for 40 years“Only in the last 18 months did I recognise I‟d actually been caring a lot longer than Ithought. I met Simon 7 years ago, and I knew then he wasn‟t a well man. He hadn‟t beendiagnosed with epilepsy then and we didn‟t know what was wrong. So about 3 months intothe relationship I started attending health appointments with him. I had to buy another housethat was more accessible, and I realised that this has had a real impact on my life, I‟m acarer.” Simon had a number of falls, resulting in several lots of surgery including emergencybrain surgery. Any opportunity for him to work again was dashed, putting Alastair in the roleof sole breadwinner. “That was when I became the full-time carer and the full-time worker. Idon‟t feel like a real carer because generally you can see the disability but with him it‟sdisguised, the pain, seizures, all that, it‟s only when he wears his [protective] hat and lookslike this [shows photo of bruises resulting from a fall during a fit] that I realise he‟s in such abad state and that I‟m dealing with this on my own, and I have dealt with that on my own allthis time.” AlastairPathway pointer People often don‟t recognise or label themselves as carers, so any initiatives directed towards them may need to use a broader vocabulary or explanation to register with some carers who would benefit from all sorts of targeted support.This limited interpretation of „carer‟ may also apply to professionals, who mayinterpret the caring role as physically based and underestimate or discount theamount of emotional and organisational support many carers provide.Anna, a doctor working in a hospital setting, now provides less personal care for herhusband than when he first had a stroke four years ago, when he needed almost everythingdoing for him. “Usually „carer‟ as we understand it is those that help with physical needs andthat‟s obviously much less involvement now. In one way I‟m still a carer because there arestill things that he can‟t do.” Yet although he was formerly doing a PhD, he can now barelyread, has speech problems that mean he isn‟t confident on the phone, cannot drive, and hasmobility problems which mean he does not really do anything outside the house on his own,Anna appears not to consider the fact that she still has to undertake most necessary tasks oflife on his behalf as part of her caring role (while also working full-time and bringing up twosmall children.)Lesley Pattenson and Steve Bedser 31
  • 32. Carers and Work – a report for Birmingham City CouncilAttitude to caringThe carer‟s attitude to caring will have a significant impact on whether they aremotivated to seek paid work outside their caring role. During the recruitment processmany carers approached were excluded because they indicated that they had nodesire to return to work.“Sometimes carers see their caring role as a vocation; some have said to me, „Well I‟vealready got a job, thank you!‟ They get so used to caring that they don‟t want to go back towork”. Maxine, (who has extensive contact with other carers through carer organisations).Some of these specifically said that they were better off not working or that paid workwould lead to a reduction in benefits. (See finances and benefits).“Some get such good benefits between them and the cared for, it‟s a job and an income initself. Some carers don‟t want their relatives to be independent, though they could be, butthey don‟t want to let go of them because they‟re on quite good incomes.” MaxineIt should be noted that this was in contrast to the carers interviewed, most of whomwere under varying degrees of financial pressure and who, without exception,considered the Carer‟s Allowance to be inadequate and derisory for the amount oftime, effort and commitment given.Ellie said she would always put her son first, and make sure he‟s happy and safe, she hasn‟tthought about herself too much.Although wanting to return to work in principle, many non-working participantsindicated that their priority was the cared for person and that their own needs weresecondary, which had in many cases resulted in taking no action towards their statedaspiration of seeking paid work.“You hear all the time, „well I wouldn‟t trust anyone to look after my mum‟ or „I don‟t trustanyone coming in my home‟ and I know a lot of people will use that as an excuse. We‟d alllike the best but you‟ve got to be realistic; when you send your relative to a day centre, whenyou go into hospital, or go to school, how do you know what‟s going on? That‟s a get out.”MaxinePathway pointer The pathway should not presume that everyone expressing an interest or making an initial enquiry will continue in a direct line to seeking employment.Motivation for seeking / retaining paid workOf course, for some carers finance was the main motivation for working.At the end of her maternity leave, just a year after her husband had a devastating stroke,Anna really had no choice but to return to work. “We had some problems legally aboutstaying in the country, because I wasn‟t working, he wasn‟t getting any money, my maternitypay had finished, so I didn‟t have a choice anyway, but it was my husband‟s wish too [forme] to go back, he wanted me to continue my medical training”.Lesley Pattenson and Steve Bedser 32
  • 33. Carers and Work – a report for Birmingham City CouncilLouise‟s main reason for wanting to return to work is financial, her husband is coming up toretirement and they are now having to support two children going to university.However, for many others, the aspiration of returning to paid work was most oftenfuelled by a desire to get out of the house and do something other than caring;financial support was mentioned as a second motivator or as a bonus.Kiran, who has a number of ongoing serious health problems which limit the type of workshe could do, said the reason she would like to work would be to get out of the house. Shewouldn‟t consider any paid work she could do from home because “I don‟t want to sit athome and do it, I don‟t want to be stuck at home.” She volunteers at a local charity shopwhen she feels well enough.“I‟d say, just getting out of the house; in my caring role, sometimes you get lots of time anddon‟t think about yourself, it‟s just automation, you don‟t get to talk, you get so lost you getreally really low. But being out there, you look forward to it, meet new people.” SharinaThis is a significant finding for the pathway as it means that the leap straight from nowork to paid work could be eased by starting with training, volunteering or an unpaidwork placement as a means of improving skills, experience and general confidenceprior to obtaining a paid position. Providing they didn‟t have a negative financialimpact such suggestions or options might be well received if presented as anopportunity not only to increase work chances but also to meet the need to „get outof the house‟, meet people and have some interest outside of caring.Another key incentive given by a number of carers was about reaffirming self-worth,not just being a carer, something which utilised their other skills and abilities.Although of course the money would be nice, Catherine‟s main motivation was definitelyabout doing something with her life outside her caring role. “It would be nice to get a bit moreindependence and take control of my own life, and be a person again.”Vera is a qualified teacher but returning to teaching would be too stressful and would not fitwith the demands of caring for her autistic son. She is however, very keen to return to work.“The main incentive is the idea that you‟re not just the carer, it‟s your self-worth, using yourbrain, and confirming your abilities and skills.”For some carers already in work it is a lifeline to retaining their sanity.“For my sanity – yes, I enjoy work.” Marion‟s company has warned that she will be maderedundant in the next few months due to financial pressures. “That will gut me, it‟s myrelease.” So she is now considering alternatives. “I would like to work for as long as possible.I did consider becoming a full-time carer but that would be totally soul-destroying for me,because I love people, I love interaction with people, I love talking to people, I love talking.But at the end of the day that would destroy me totally.” Marion, 63, who cares for her elderlysick motherPathway pointers Stimulating cost neutral options may be beneficial not only for increasing employability but also improving mental health and wellbeing of carers.Lesley Pattenson and Steve Bedser 33
  • 34. Carers and Work – a report for Birmingham City Council Support in terms of covering expenses (travel etc) and ensuring benefits are not affected is essential in promoting such opportunities. A personal review including an exploration of the motivation and constraints to working should be seen as an essential and integral early stage. This should help the carer to evaluate whether aiming for work is a realistic outcome. They may recognise or accept that a search for work is unlikely to be fruitful, in which case the pathway should incorporate sign-posting to other options be it benefits advice, voluntary work or additional support for the carer themselves.Fears and concerns about juggling caring and work responsibilities“Anything to do with my son is my number one priority.” SharinaWithout exception, carers indicated that their caring responsibilities will always trumpwork responsibilities. In various ways, this was cited most often as a barrier to takingsteps on the path towards employment or directly seeking work.Shazia has two children on the autistic spectrum. She has decided to cease voluntary workand not to pursue further training from September so that she can concentrate on her son;the priority is to work out his future education. “With my son going into Year 6 in September,we‟ll be going out to look at senior schools with him, and the year after it‟ll be with mydaughter.”Carers expressed concerns about their ability to both care and work, which was alsoa barrier or a genuine fear of accepting a post and then letting the employer down.“One very big preventative factor in going out to get a job, is reliability is an issue, if I get aphone call from school, or my eldest son returns home and has just broken down, everythinghas to be put on hold to look after him then. If I look at a job application and think that wouldbe perfect, the first thing that comes to mind is, yes but what about when the eldest ladcomes home and needs intensive care for a while, what then? That diminishes my ability towork or access anything. There is nowhere to go with that, nowhere to turn to, no-one tosay, can you come and hold the fort for me for an hour while I do this bit of work. ” MarySharina, a carer since she was 9, currently cares for her son and aunt: “I‟ve had a lifetime ofcaring. I would love to do some paid work, but in the back of my mind is that hesitation of I‟vealready got 1001 things to do at the moment, would I be able to cope with a job; that guilt, if Itake up a job, I could lose the job. Also my health and other responsibilities. I feel as thoughI‟ve got a ton of bricks on me, I‟ve thought about it a lot, why not have 2 – 3 days a week, interm time, to do things or juggle around.” Yet, in spite of high expressed motivation, Sharinahasn‟t yet taken any steps to look for work, or at any training or courses that would help herget back into work. “Even looking at things is too time-consuming, and because I‟m notmentally stable, that would contribute towards it as well, mentally my concentration, I can‟tcope, that‟s number one, then time. With me, it‟s up and down, and it‟s time-consuming, andI might even feel more low and more down. I might start it off but not be able to finish it, thenI would feel even worse in self-esteem. When my health gets me down I can only do what‟sneeded, my way, if I feel someone is pestering me, I‟d feel even more low, and my self-esteem would go down.”Lesley Pattenson and Steve Bedser 34
  • 35. Carers and Work – a report for Birmingham City CouncilJane‟s previous experience has made her feel apprehensive about future employers.”It willbe worse with a new one when you‟ve not proved yourself. If you hear comments like I heardat my at other job [about caring responsibilities], you get nervous to say anything to anotheremployer that might reflect badly, what if I need time off, I have such high standards, and Idon‟t like letting people down, if I ask for this time and this time and this time off, I feel likeI‟m letting people down, even though I work really hard”. JanePathway pointers Carers need to be in the right place mentally and emotionally. Many carers reported depression and lack of confidence, which would need to be addressed before they were able to move towards obtaining paid work. (See Confidence building.) Unless there is some sort of respite from caring to give them practical and emotional time and space, alongside pro-active support to enable carers to take the first steps, they may never make it to a job. Crisis arrangements need to be in place in case of emergencies. (See Crisis Emergency Response Service ) Good employers should have good carer support policies for such eventualities. (See Workplace policies and practices)Although there are clearly potential conflicts between work and caringresponsibilities, it should not be assumed that all carers whose paid work positionshave ended were because of their caring responsibilities. In the course of the study awide variety of reasons were given including jobs ending, redundancy, workplacestructures changing, injuries, illness, bereavement, dissatisfaction with a post etc. Aswell as caring related factors, carers are subject to all the other reasons for ceasingpaid employment, whether by choice or not, as the rest of the population. However,when it came to returning to work, caring responsibilities were often the primarybarrier for non-working carers in the cohort.Good organisation of work and home / domestic lifeAmongst the cohort of interviewees there were a number who had managed to stayin work or return to work successfully through a combination of implementingcreative strategies for caring and domestic responsibilities, innovative carearrangements and having positive, supportive and flexible employers.Lisa had supportive and co-operative family members living in the home providing additionalsupport, had successfully acquired Direct Payments and recruited paid carers who aretrusted and reliable, has a flexible and innovative employer who set her up to work fromhome, and negotiated a 37 hour worked over four longer working days.A key to successfully being able to return to work full-time outside the home for anumber of carers was having support systems in place in the event of a crisis athome, good domestic preparation and organisation, and anticipating problems andimplementing creative solutions.When Anna returned to work full-time after her husband‟s stroke and the birth of her child,they arranged for a child minder who came to the house. Although she didn‟t do any directcaring for her husband she was flexible and on hand had there been a problem. “I got thingsLesley Pattenson and Steve Bedser 35
  • 36. Carers and Work – a report for Birmingham City Councilready, I‟d do more cooking at the weekend so meals were ready and just had to be warmedup. Then once I left the house it‟s not that he had to do housework or anything. I got thingswell prepared, now things are different he can do cooking as well, but at that time that‟s howwe managed. Then we started the baby in a play group 2 or 3 afternoons and we still hadthe child-minder. The child minder and another friend had a key and it was agreed that wecould call them if there were any problems, when I was at work or on call. After the secondbaby I was under pressure to go back quite soon, so I started to wean him sooner than Iwould have done; the baby wasn‟t walking, obviously my husband couldn‟t carry him fromone room to another, so we were just trying to be creative; we had one of those babywalkers and when we tried it that way, he could take a step or two and my husband couldsort of push him along a bit.”Some carers pointed out that they need the space and time when they are not caring(children at school, adults at day care) to undertake all necessary domestic duties,so that they are not taking up that time when the cared for person needs theirattention when they get home. Fitting in these domestic responsibilities may hamperprogress towards paid work during these hours.“I try to make sure that everything‟s done in the house, so at the weekend and after schoolI‟m free so when they‟re most stressed and they‟ve had enough at school, when they gethome everything‟s done, because if I took them shopping, (laughter) I‟d find them under thetoilet rolls, hiding in the supermarket; they don‟t like crowds, don‟t like the lighting.” ChristinePathway pointers It should not be assumed that time when the cared for person is away from home means that that time is potentially available for paid work. Case studies of individual carers showing how they have successfully combined caring and working might be a useful resource to share with new carers or carers wishing to return to, or remain in work. A checklist of things to consider or set in place, practical tips and examples, pointers to short cuts, time savers, etc. could be provided as part of the pathway to help carers think through and plan how to achieve both roles successfully.Lesley Pattenson and Steve Bedser 36
  • 37. Carers and Work – a report for Birmingham City CouncilFINANCIAL FACTORS IMPACTING ON CARERS GETTING ORSTAYING IN WORKMaximising income – to work or not to work?A number of carers were on benefits of some sort including Carer‟s Allowance.Some carers, mostly the married ones with a husband in full-time work, were not.But, regardless of current source of income, for many carers, as previously notedadditional income was seen as a bonus of returning to paid work, and notnecessarily the primary purpose.Nevertheless, people are unlikely to take steps to return to work if they believe theywill be worse off financially. Even when financial gain is not the main motive foraspiring to work, it is unlikely that such carers would be willing to accept a reductionin family income. As also previously noted, there is no financial incentive forreturning to work unless it brings in sufficient income to offset any correspondingreduction in benefits (there may be a knock-on effect in a household where severalpeople are on benefits).“I‟ve gone for interviews sometimes when I‟ve seen a job that I‟ve thought would be perfectand gone along to test the water, and when the benefits calculation is done I‟d be muchmuch worse off. I‟m told, try and get a job for under 16 hours a week that pays such andsuch but often they‟re not the kind of jobs that would take me in the long term direction that Iwant to go, and after spending my life caring and having all my time taken up, I don‟t want togo and work in a call centre or stacking shelves, no harm to those who do that but theyprobably don‟t have the level of commitment that I‟ve had. I think it‟s very very important, thatI see myself at the end of these three years that I have a platform to go out and dosomething viable that I would enjoy and that I feel I would be good at.” MaryFurthermore, a pivotal issue for carers with a substantial caring role wanting to returnto work, is how to source and fund the care necessary to replace the care they wouldno longer be available to provide, presuming the cared for person still needs thatcare.The big barrier preventing Maxine going to work was the cost of replacing the care that shewas providing for her mother. “I‟d have to have earned a big wage, and all my wages wouldbe going on paying an agency or a carer to come in, so I‟d just be paying out. There‟s a few Iknow who would like to go back to work, but they‟re caring full-time and like me, couldn‟tafford to pay someone to come in, so I think maybe if the government would provide help,like single mums can have help with childcare, why can‟t carers have someone. It would begreat if there was an option for all the carers to go to work by having everyone looked after,but the government wouldn‟t be able to afford to do that”. MaxineConversely, those carers currently used to receiving a full-time salary wereextremely keen to maintain that level of income for as long as possible. However, forworking people who can see no option but to reduce their working hours to take onmore caring responsibilities, replacing lost income is also critical; they may then beable to continue to work part-time.Lesley Pattenson and Steve Bedser 37
  • 38. Carers and Work – a report for Birmingham City CouncilValerie lives close to her elderly and deteriorating father who needs increasing support toremain living independently in sheltered housing. “Because I work for myself, that‟s thereason I can care for him, but my financial state has become critical, so then I‟m looking forfinancial support. The only option for carers is to give up their job, that‟s the main option, ifthere‟s no other way to keep the roof over their head, by getting housing benefits andincome support, it‟s not their fault. But I really don‟t want to give up my job.”Pathway pointers For people who do not have high earning capacity, unless alternative care can be funded this group of carers will not be able to get back to work. Carers need access to sound and up-to-date financial advice as well as guidance and help to access services and benefits entitlements (which ones, how much) and any alternatives for which they might become eligible. The pathway must include a personalised financial review at an early stage. This should be an individual assessment based on a full exploration of their personal circumstances and finances/those of the cared for in the context of the whole family circumstances. Job Centre Plus can offer a personal „Better Off‟ calculation.Benefits adviceA number of organisations in addition to the DWP11 and Job Centre Plus apparentlyclaim to offer benefits advice to carers. Yet access to, and quality of, financial and /orbenefits advice seemed to be pretty patchy. Very few participants appeared to havehad a systematic financial review looking at the combined situation of cared for andcarer to determine the most effective approach. Different agencies seem to haveprovided different advice. People didn‟t seem to know how starting or increasing paidwork might impact on any benefits they were receiving if they had any. Carers hadnot been signposted to benefits advice agencies by services they had been incontact with.Catherine has found out about benefits entitlement for herself and her sons from a variety ofpeople, often too late. Because her younger son is now away from home 4 nights, herCarer‟s Allowance has been reduced accordingly. She only found out last year that she wasentitled to Attendance Allowance, and they would not backdate it. The older son getsDisability Living Allowance (DLA). She does not appear to have had a comprehensive reviewof her benefit entitlements nor sought out tailored financial advice including benefits and theimpact of working.Since taking early retirement from full-time work to care for her husband, Jean has not beengiven any information about how her changed status might affect her benefits eligibility andspecifically whether she could now be eligible for Carer‟s Allowance.“Help identifying any financial benefits we might be entitled to when he was released fromhospital, that would have been the most useful thing to have had at that time because it wasso confusing. Finding all that stuff out later and filling in those forms at that time was reallydifficult, I felt so drained and felt exhausted filling in the DLA form, even though my dad11 The national pensions, disability and carers services merged in Jan 2008. The Disability and Carers Service ispart of the Pension, Disability and Carers Service (PDCS) which is an executive agency of the Department forWork and Pensions (DWP). It provides financial support for customers claiming disability benefits and their carers– specifically Disability Living Allowance (DLA), Attendance Allowance and Carer‟s Allowance. Pattenson and Steve Bedser 38
  • 39. Carers and Work – a report for Birmingham City Councilguided me, (his sight is going so he has DLA, he said „You should apply, it will help yousurvive financially‟.” Alastair“I‟m not signing on, but I‟m going to see my old careers advisor at the job centre, it‟s notpolicy but he‟s going to help me, would working tax credit help, if not, then I have to sign on ifonly so I don‟t have to worry about paying the rent.” ValerieMarion said her brother sorts out their mother‟s finances, but he had told her that he‟s notclaiming for anything because her mother didn‟t want it doing, so he says he is paying foreverything himself. She hasn‟t claimed for anything even though she‟s the carer, becauseshe was under the impression that he was dealing with stuff. She‟s asked him no end oftimes. “You can see how naive I am, I struggled, I buy her food, her clothes, all kinds ofstuff”. So she has never herself had a conversation with a benefits advisor about her mother.Pathway pointers This is a specialist area; there is a need to identify competent service providers which can offer benefits advice to carers and their families, and link them into the pathway. Although working carers are not eligible for Carer‟s Allowance, there may be other benefits that the cared for person may be entitled to. Where there are different family members involved in caring it is important to ensure everyone knows who is claiming for what, or not; a family review could be beneficial.Carer‟s AllowanceA number of the carers who were not working were claiming Carer‟s Allowance,which was considered grossly inadequate by all, both financially and in terms ofrecognition of the time and support provided. However some carers in the study hadnot even heard of Carer‟s Allowance. “I see my work at home as very undervalued and unpaid, I do get Carer‟s Allowance but itdoesn‟t compete with a full-time wage and I don‟t have the ability to do that. How much canyou give when you‟ve already given so much, I see that I‟ve given most of my life up tocaring responsibilities, and I want to go out and do something other than that.” Mary“The Carer‟s Allowance isn‟t helpful for anyone, I‟ve met carers, no wonder they‟re all onanti-depressants, I would spend half that £53 on petrol each week, not counting car tax orinsurance, to get to my dad twice a day plus appointments, and clinics, and on top of thatgas, electric, food and so on. If I go for Carer‟s Allowance it affects my father‟s benefits, he‟son severe disability and attendance allowance and that money is reduced to give to me, andI‟m living off my dad already”. ValerieIn fact it is worth having the assessment because even if the other benefits cancelout Carer‟s Allowance, a positive assessment i.e. an „underlying entitlement‟provides access to top-ups of other benefits as well as enhanced National Insurancecontributions. None of the carers this applied to seemed to have recognised orrealised this and do not seem to have received appropriate advice. 1212 Pattenson and Steve Bedser 39
  • 40. Carers and Work – a report for Birmingham City CouncilLisa cannot claim Carer‟s Allowance as she works full-time. Her daughter, who lives athome, is at college and was entitled to apply for Carer‟s Allowance to help with her step-father because both her work and study hours are below the allowed limit. She emptiescatheter bags, makes drinks, looks in on him when Lisa is busy working, fetchesprescriptions, and helps him in many other ways.Pathway pointers If one member of the family is ineligible, it may be that another one does or could do more caring and be eligible for Carer‟s Allowance. Carers and family members may be missing out on Carer‟s Allowance or the related benefits they may be entitled to. This is why a comprehensive review of family finances is important rather than just looking at pieces of the jigsaw separately.Lesley Pattenson and Steve Bedser 40
  • 41. Carers and Work – a report for Birmingham City CouncilFORMAL AND/OR ALTERNATIVE CARE ARRANGEMENTSCarers by definition spend a considerable amount of their time providing support invarious forms for one or more other people. Time and time again, carers reiteratedthat the needs of the cared for person were paramount. This has two mainimplications for work. Either, work had to be fitted around such times as they werenot required to be caring, or, an alternative source of care had to be provided toreplace their input, so that they could go to work. In the latter case, this might meanan ongoing arrangement, or it might mean putting arrangements in place for theunexpected, or crisis situations. Aside from the financial issues already noted, thiswas the biggest challenge for carers wanting to return to work.Pathway pointer A major step in enabling carers to return to or sustain work, is to provide any assistance and support carers may need in reviewing options and securing alternative care arrangements which are acceptable to both themselves and the cared for person.“I do everything for my mum, literally. We tried to get carers in to help but she wouldn‟t haveit so for the last three years I‟ve done everything for her, feed her, wash her, look after her,take her out. I get agitated myself at times because it is so restricting.” Marion, whoconsequently has cut down from full-time work to part-time work in the afternoons to but iskeen to maintain this level of work outside the home.“I did once try paying someone to care for my son in the holidays but my son didn‟t really likeit so I stopped it after six weeks, it wasn‟t worth upsetting him.” CatherineJean‟s husband, who has had two strokes, went to a Day Centre for a number of yearsbefore he also developed diabetes. Sometimes when she came home from work she wouldfind him slumped in the chair having gone hypoglycaemic, because he was on insulin but theday centre staff had not ensured that he‟d eaten enough during the day. No-one asked himwhat he‟d like to eat and he didn‟t like the food they gave him. So she has kept him at homefor the past 4 years and recently accepted early retirement because it had become too hardto work full-time and look after him. She now wants to find part-time work until she‟s 65,primarily “to motivate me” and secondly “for a bit of extra money to pay the bills.”Pathway pointers The carer is unlikely to continue with the alternative care arrangements unless the cared for person is comfortable with them, so a range of options may need to be explored to find something appropriate. It may be necessary, for the carer‟s peace of mind to enable any new care arrangements to be tested for a trial period before they feel able to commit themselves to work or a training course. This needs to be accounted for in action planning and time expectations.Christine says her caring role for her two sons means “I have to communicate to the schoolsfor them, in terms of understanding each other. I‟m the mediator, it could be on a daily basis,with teachers, governors, communication autism team, or CAMHS [Children‟s andAdolescents‟ Mental Health Service]. I email, make phone calls, go in for meetings. It‟s like aLesley Pattenson and Steve Bedser 41
  • 42. Carers and Work – a report for Birmingham City Councilfull-time job. My biggest gripe is that if the education was better for both my boys I could bein work and I wouldn‟t be a carer.”A further benefit of supporting carers to get improved support for the cared forperson is that, because for some carers one of the biggest demands on their time isthe time they spent advocating for, intervening or trying to get more suitable care orservices, it could potentially free up more time for working.Statutory service provisionSocial Services“We had a wonderful social worker, a godsend, who really cared, but left due to cuts. I couldjust phone and ask her anything, but when she left, her post was cut and we don‟t have ourown social worker any more. Now, if I need something I have to ring a duty social workerwho knows nothing about the situation. The only reason I‟ve not complained about this isthat the original social worker set the whole system up so well that generally I don‟t have toworry.” LisaPathway pointer A good social worker can make or break the situation for carers in terms of establishing a good care package and providing sound advice. Help may be required in accessing social services support.Children and Family ServicesThe Disabled Children‟s Service was mentioned by one carer; they had failed toprovide crisis support when urgently needed.[Following an accident] “I was flat on the sofa and couldn‟t move. Consequently they [twoautistic teenage children] sometimes went to bed feeling hungry because there was no onewho could come in and help make dinner. I did get onto Disabled Children‟s Social Servicesbut they had nothing to offer and didn‟t think they could refer me onto anywhere. I did say,„for the want of someone coming in for an hour for a couple of days, my kids are goingwithout‟. Unfortunately my daughter had exams the first week so she was really upset, shejust wanted to come back, have her dinner and get stuck into revision. Then my son‟s comehome and is stuck upstairs and down here [the kitchen/living room] is showing signs ofdereliction, we‟ve got a dog who‟s not being walked, but no one could come in and help, itwas bizarre, if anything happens to me, I suppose they would go into care.” MaryPathway pointer If support services are not perceived as reliable by carers they will be reluctant to commit to employment when they know that it is going to be left to them to cope in the event of a crisis.Domiciliary careSome carers had experience of paid support workers coming in as provided bySocial Services, but such services can be unreliable, inflexible and unaffordable.Lesley Pattenson and Steve Bedser 42
  • 43. Carers and Work – a report for Birmingham City CouncilJean, 60 came to the UK 21 years ago. She has been caring for her husband since he hadhis first stroke 17 years ago. He attended a rehabilitation centre several days a week.Because she worked shifts, sometimes she needed carers to get him ready for the centre,but sometimes she was at home and got him ready herself. Even though she tried to explainwhich days she didn‟t need them, the carers would turn up anyway and there was nothing forthem to do but she‟d still be charged. After some wrangling the service decided to withdrawtheir services 11 years ago since which time Jean has managed all care herself “Me justgets up and does it.”Pathway pointers Assistance may be needed in negotiating care which is designed round the convenience and needs of the cared for and the carer, rather than the provider. There is a need for flexible care arrangements and contracts which can be changed perhaps with short notice to accommodate changing needs according to shift patterns worked by the carer.Day centres“Some carers are lucky, their relative goes to a day centre from 9am to 4pm so they‟ve got30 hours a week, plus they get regular respite, so while they are there, they could go towork, if that was my situation surely I‟d have been able to get something and work 16 hoursa week. That wasn‟t an option for me because mum‟s needs were too complex”. MaxineAdult day care provision offers both respite for carers of adults, and a potentialopportunity to work during centre hours.Marion has tried to get her elderly mother into a day centre through social services, but inspite of a positive discussion and confirmation of funding being available for a place nearly ayear ago, the social worker has never followed it up, although both she and her brother haveattempted to chase it without success.Furthermore, several carers found day centre provision unreliable with changesimposed with little notice, both in terms of occasional temporary closures and thefear of permanent ones. They cited actual or potential problems when day centreswere closed, be it planned or unplanned (e.g. snow closures) which meant that theywould have to be at home to care, and be unable to go to work. More worryingly forsome carers, changes to the provision of care mean that some day care facilities areunder threat of closure, making it hard to make long term plans for the future, e.g.committing to a job that is dependent on the continuation of current carearrangements. If care and support is not delivered consistently, and if day centrescontinue to be closed, it may significantly limit carers‟ opportunities to take up orsustain paid work.Ellie‟s learning disabled son attends a day centre 5 days a week, releasing her for 6 hourseach day in which she could seek employment. “I was lucky getting him into the day centrebut I‟ve no idea whether that facility will continue, especially given the economic climate, twoother centres closed recently, resulting in an additional 30+ students at the one he attends.”Margaret could not continue working part-time because “My daughter‟s day service fell apartand she was then with me all day, and the little bits of Health and Social Care I did get wereoften at the very middle part of the day; I couldn‟t go to work at 9‟o‟clock and say to myLesley Pattenson and Steve Bedser 43
  • 44. Carers and Work – a report for Birmingham City Councildaughter, „Be ready to go out at quarter to eleven and go to the adult education class at halfeleven‟ because she has no concept of time. So it became quite an issue – if you‟re given aservice that‟s just 2 hours a day when you‟ve actually been having a service that‟s been 6hours a day, then your whole system falls down.”After encountering various barriers and red tape, Mahmood eventually secured a place forhis mother at a Day Centre. The Council then closed it and she was at home for 7 months,and became very depressed because she missed the variety and company. Mahmoodpressured the Council again until they found her a place at a privately run centre in anotherarea which she now attends 5 days a week.“What is very sad is that many carers are in the future very soon losing their placements. Ifyou‟ve had a three or five day placement, and that‟s coming to an end, and truthfully there isvery little out there for them to do, then how can you carry on with your job? They are inForward to Work‟, like day care, but training for work, which is Birmingham‟s model forpeople with learning disabilities. But a lot of the time they take people who they then realisecan‟t cope with work, so then they move them out of the scheme, but there‟s very little tomove them out to. All the time you‟re fighting the system, and if I was in that position I wouldhave to give up my job.” MargaretPathway pointers Greater access to day care facilities for people relying on informal carers may, in theory, enable carers to work on at least a part-time basis. Support in accessing assessments and services may be an important step on the pathway. Service providers need to offer a consistent and reliable service; a joined up approach between Council functions would be helpful.Education and school holiday schemesThe school holidays were highlighted by every parent-carer as a major barrier sincethey could not take a job which required them to work during the holidays.Furthermore the school holidays place a considerable additional burden on parent-carers. Without a break during the day they may be on demand 24/7 for 6 weeksover summer. Yet there appear to be no suitable holiday schemes which cater fordisabled children or those with special needs to maintain stimulus and structuredsupport, while enabling parent-carers to either spend time with other school agechildren, have time for themselves or continue with work commitments.“School holidays, you put other children in play schemes, but there‟s nothing for my son,nothing specific for high functioning autistic children. The ordinary schemes there are hewould feel left out, the staff would have to know how to handle things. There is a gap inprovision for high functioning autistic children, who are seen to be able to cope, and possiblycould if they had the right support. He‟d be OK with other adults, if he thinks they areunderstanding, they would have to be OK.” VeraIf holiday schemes designed for children with special needs were available, or ifspecialist support was provided to enable them to participate in mainstream ones,this in one single step would enable many more parent-carers to consider seekingpart-time work, so long as it also fitted in with school hours.Quite aside from the potential for enabling parents to work, there are also benefits forthe child.Lesley Pattenson and Steve Bedser 44
  • 45. Carers and Work – a report for Birmingham City Council“When the kids are on holiday we need someone to take him out and play with him, when hestays at home all the time he starts crying and hits himself, he doesn‟t like to stay in,sometimes, the other children don‟t want to go out, and I can‟t leave them at home.” NafraPathway pointers If parent-carers are to be able to work then there need to be opportunities for holiday schemes which provide children with special needs with the same levels of attention and support as they would receive at their schools. The Council could promote a joined up approach to supporting parent-carers back to work by liaising between relevant departments and agencies and encouraging them to develop a range of specialist holiday play schemes and activities for children with special needs, or to extend and integrate the one-to-one personal assistant support which is supplied within school settings, to play groups, play schemes, and holiday and adventure schemes which are available for other children.TransportReliability of transport for cared for people to school or day care can make or breakthe opportunity to work.“I was very fortunate in that my daughter went to school out of the catchment area so shehad a taxi to collect her which was quite reliable compared to a school bus, which can be agreat help, it was always there and nearly always on time.” MargaretMahmood‟s mother was taken to her original day centre by the Ring and Ride service,however Mahmood said that the service was not consistent and reliable, they could pick upany time from 9.45 – 11.30am and drop off between 3.30 and 6.45pm. This was veryrestrictive leaving only a small window of time when he could be out pursuing other activities,and would certainly have impacted on his ability to take a job.Pathway pointer Where transport is required for cared for people to access service provision, advocacy in securing a reliable service may be needed.Health servicesThough not to be seen as an alternative form of care, there may be periods when thecared for person does require hospital treatment and this may have a significantimpact on the carer as well as the cared for.Lisa‟s husband was in hospital for three months with an infection; “It could have been dealtwith more quickly but the powers that be said he needed two carers and they wouldn‟tdischarge him until they were in place, but social services and the health service werearguing about who should provide it. In the end the social worker got it all sorted out and gothim out of hospital cared for by two carers”.When Jean‟s husband was admitted to hospital she felt totally disregarded and that theywere deciding things without her. “As for me, as a carer, there is no support. Me don‟t exist,Lesley Pattenson and Steve Bedser 45
  • 46. Carers and Work – a report for Birmingham City Councilthat‟s what stresses me”. At home he is used to being in bed, upstairs with a commode, (buthe can come downstairs to the shower room and they have handrails, shower seat etc.) Inhospital, they sit him in a chair 9 hours a day, not moving, without leg support so his legsbecame swollen and developed a skin lesion, and a catheter became infected andsuppurating. When Jean pointed these things out, the message was not passed on to thenext nurse or shift so there was no continuity of care. His discharge plan says that he needs2 carers twice a day and a hoist. They‟ve never asked her but she‟s cared for him for 17years and says he can manage fine with just her swinging his legs onto the bed. She‟s beentold she will face legal action if this level of care is not provided, and she thinks they areimplying she‟s not fit to care. She just wants him to come home so she can care for him.“I feel we were let out of hospital, and it was „Go on your way and cope‟. It was that realinvisibility, no-one even knew that we exist here, and what we‟re dealing with day by day,and then, if we don‟t push ourselves forward, we‟ll be forgotten about, and I feel like I‟mreally pushing.” AlastairPathway pointer Whatever the situation in assessing care needs on a temporary or permanent basis the carer should be fully involved, they are most familiar with the cared for‟s abilities and needs and their own capacity. Carers may need advocacy and appropriate referrals to help engage with providers in order to secure appropriate ongoing care.Incidentally, John expressed considerable concerns that carers were being inappropriatelytrained to undertake tasks which should be done by qualified nurses: “Carers are beingoffered 20 minutes training in administering diamorphine; as a student nurse, I was notallowed to administer medication without supervision and had to go through rigorous drugadministration assessment, rightly so. So the point is don‟t expect carers to take on rolesthat they are not trained for, of a qualified social worker, or a qualified nurse. They are notgiven the training to do so appropriately or safely.”Direct PaymentsInstead of reliance on statutory provision of care, Direct Payments offer the potentialfor a tailor made package of care to suit the needs of the cared for person and thecarer. Yet many participants in the study were unaware of or had not considered thepotential of Direct Payments as a means of providing care which would enable themto be more available for work.Others had considered, but rejected the idea, mostly because they didn‟t want totake on the employer‟s responsibilities but also because they felt it would not becost- effective or provide sufficient hours cover to return to work.“They offered me Direct Payments, but I turned it down because I would become theemployer and I‟d have to find the staff, CRB check, maternity pay and all that, and also, Ineeded two carers to come in four times a day, so if my carers didn‟t turn up then I‟ve got togo and find some, I didn‟t want that responsibility. Also the agency was charging the Council£8.75 an hour because they have a large contract, but would charge an individual usingDirect Payments £15 an hour so it would cost twice as much. And even if I had DirectPayments, that still wouldn‟t allow me to go to work, because you‟d be allocated a budgetLesley Pattenson and Steve Bedser 46
  • 47. Carers and Work – a report for Birmingham City Counciland it wouldn‟t be enough to pay for people while I went to work, so I‟d have to earn a lotmore to top it up.” MaxineWhere carers were interested in applying, there were reports of significant delays inaccessing assessments.Because her own health is seriously deteriorating, Kiran would like to get a paid carer to helpwith her 29 year old daughter, but doesn‟t know how to get that help. She has never had aCarer‟s Assessment for herself and her daughter has never had an assessment of her needsas an adult. They have not had contact with a social worker since she was a little girl atschool. Mencap told her she should be eligible for Direct Payments, and has been trying toget her an appointment with a social worker for the past year, but because of the shortage ofsocial workers still nothing has happened.Pathway pointer Carers may be keen to progress steps to work but be thwarted by delays in the systems which form important elements of the pathway.Other carers found that there were unexpected barriers to eligibility orimplementation.“The government website says with Direct Payments my father can choose who looks afterhim, so long as they don‟t live with him,13so I thought, let‟s go down that route and pulled in asocial worker, who visited my father to see the situation. Later she rang back to say that for 4– 6 weeks, my father has to have care workers coming into his home before, or if, they setup Direct Payments, this is the re-enablement programme. She said „it‟s a new scheme, it‟smandatory, for everyone‟. But I explain again that he‟s adamant he does not want externalcarers in his home, he wants me as a carer.” As a result, Valerie has ruled out the option ofpursuing Direct Payments for herself to support her father as he had refused to haveexternal carers. “They‟ve promoted it as choice, but it‟s nonsense, fundamentally untrue, andwasted my time and that of the social worker.”Pathway pointer Although this change has not been verified, if arrangements for accessing and assessing support do change, staff from all agencies need to know to provide up to date and consistent advice. In general there needs to be a clear source of information detailing the criteria, limitations and processes involved and all staff need to be trained appropriately.Others found that the assessment of care was not consistent with what they werelooking for, or would be unaffordable.Jean and her husband were assessed for Direct Payments and advised that they needed tohave ¾ hour support in the mornings to get him washed and dressed, and someone to puthim to bed in the evening which would cost, on top of the Direct Payment provided, another£46 a week which she couldn‟t afford. She said she would still have to do everything else,the bulk of the work, cooking, washing etc. anyway. She understood the carers needed to be13 Direct Payments cannot be used to secure a service from a spouse or civil partner, close relatives or anyonewho lives in the same household as you, unless that person is someone who you have specifically recruited to bea live-in employee. From Pattenson and Steve Bedser 47
  • 48. Carers and Work – a report for Birmingham City Councilpaid at least £10 an hour to cover everything, NI, pension etc, but she couldn‟t afford it andhad never earned that hourly rate herself.Pathway pointer There needs to be a balance between what is affordable and what is needed otherwise opportunities to support carers back to, or in work, may be lost, hence the need for an advocate.While Albert had eventually secured a carer with whom he was very pleased, he was criticalof the whole experience of the Direct Payments assessment process, the social workerinput, the appeal process, the cost of recruitment, the offsetting of benefits against the valueor the Direct Payments assessment (i.e. the personal contribution), and the Pendrell‟s Trustsupport. He and his carer also appeared to have been misinformed about some taxationmatters. He mentioned the Direct Payments Forum which was developing a booklet to helpother people seeking support.Pathway pointers There are clearly a number of hurdles to overcome throughout the process which may deter people from pursuing. They may need direct support or referral to an independent advocate who can help them understand and navigate the process. None of the other carers mentioned the Direct Payments Forum; if this exists to provide support then carers need to be referred to it for information.Mahmood had looked at the potential of Direct Payments but felt he would not want to do theassociated paperwork.The paperwork is obviously complicated, confirming many people‟s fears.Lisa has found the returns quite difficult, and as a result of apparently not completing themcorrectly, was asked for over £2000 back which they assumed was unspent. She is currentlywaiting for that to be sorted outPathway pointer An independent source of ongoing help may be needed to resolve problems with implementing the employer‟s responsibilities and paperwork, other than the Penderels Trust.Nevertheless, a number of carers had found that Direct Payments suited theircircumstances and needs very well. They had provided an enhanced quality of lifefor the cared for person as well as enabling the carer to undertake workresponsibilities which they could not otherwise have done.Lisa‟s husband needs total care, has to be hoisted everywhere, has a catheter and needsconstant fluid. Although working from home, initially Lisa was struggling with having to carefor him at the same time. She was afraid of being caught out not at her desk when hermanager phoned, and losing her job. Then their social worker assessed them for eligibilityfor Direct Payments and they got two carers, one who works for them privately and one viaan agency, who come in four times a day. They get him up, showered, dressed andsometimes make his breakfast, come back to put him to bed for a rest, come back to get himup again and again to put him to bed for the night. “They just come in and get on with it.Lesley Pattenson and Steve Bedser 48
  • 49. Carers and Work – a report for Birmingham City CouncilWithout the Direct Payments we couldn‟t afford to have carers, the Direct Payments havebeen a very good thing.” This enables Lisa to carry on working full-time from home.Margaret gets 30 hours a week Direct Payments, “ I realised that Direct Payments were a farbetter solution, we were in control of the support packages for my daughter. then. When Ibecame in receipt of Direct Payments, that had a whole different experience for me becauseI could pay for people to support my daughter when I‟m not there. The only drawback is thateven if you have it, and you think, I can go back to work, you‟ve still got the issue of whatcan I actually buy with it that is meaningful to the person that you care for. Initially I used themoney to pay a young person to come into the home and do different things with her thatyoung people like to do like go out shopping. For me as a lone parent, that also enables meto be able to do other things too, like go walking for the day, which I couldn‟t do otherwise.I‟m in control of it, I can do things when I want to, I‟m not having to go back to Health andSocial Care. For instance if my daughter wanted to go on holiday in an organised group withother people, I have the money to pay for that, whereas before prior to that, I‟d have to goback and wait a few months to say if I could have it, and often by then the holidayprogrammes were full. For me, it‟s been very successful, the best thing since sliced bread.”Not everyone may see either the potential of Direct Payments in general orspecifically the way they can be used creatively for the benefit of the cared forperson. Furthermore, many carers themselves will have the skills needed by peopleseeking support through this channel, opening up opportunities for paid work forcarers.“I couldn‟t have gone back to work without the Direct Payments, but people may be missingout on work opportunities because they don‟t realise what the Direct Payments could offer.There are problems with the status of being an employer , I don‟t employ people that I‟ve gotto pay tax for, whereas if I had somebody 24/7 that would be very different. I‟m sure thereare some people employing care staff who don‟t realise that they have rights, in their ownhome, to tell the care staff exactly what they want doing, often carers are not aware that canhappen. My daughter‟s carer does some hoovering up with her, because eventually she willgo into supported living, so she needs to be able to do those tasks, and what is better thanactually doing it together with the support worker. That‟s equipping the people we care for forthe future, to have the opportunity, with support, to do things. There‟s a whole way of being alot more creative.” There does need to be some training for the employers and therecertainly needs to be some training for the care staff.” MargaretPathway pointers It is clear that Direct Payments can play a vital role for some carers in returning to or maintaining work. However, there are currently a lot of potential drawbacks and access to someone who can facilitate the carer in undertaking a full and informed consideration of the pros, cons, implications, responsibilities and opportunities needs to be included as an important stage in the pathway. Direct Payments could be explored within the pathway not only as a way of releasing the carer for work but a way of directing carers to work opportunities. The lack of networking opportunities for either cared for or people providing care is explored further in the section on social enterprise.Lesley Pattenson and Steve Bedser 49
  • 50. Carers and Work – a report for Birmingham City CouncilSUPPORT FOR CARERSCarers may experience isolation, low esteem, poor mental health and general lack ofconfidence which may impact not just on efforts to seek or maintain work, but onmany aspects of their lives. Carers wishing to return to work, or to stay in work, mayneed to be supported in a variety of ways either in general or specifically inaccessing relevant information and advice about training and work. Carers‟experience of both formal and informal sources of support were explored in thestudy.Formal supportCarer‟s AssessmentAll carers are entitled to a Carer‟s Assessment; although intended for respite for thecarer, this may be utilised in such a way that it allows the carer time for paid work, orfor training or voluntary work which is a step towards paid work. However, amongstthe interviewees, some had never even heard of a Carer‟s Assessment, some hadnot been offered one, some had attempted to get one but there was a long wait,some had had one but heard nothing since, or had had one but had been rejected.Nafra came to England four years ago via Europe but was originally from Somalia. She islearning English. She needs to look after her autistic son all the time. “If he gets out of thehouse, if someone forgets to close the door, he won‟t ever come back. He can‟t sit still fortwo minutes, he‟s always running around, he‟s non-linguistic and gets frustrated and angry”.He has to sleep in her bed or he wouldn‟t sleep, she dresses and washes him. Essentially,other than when he is at special school she gets no respite at all or time to spend with herother two children. Yet Nafra has never seen a social worker or had a Carer‟s Assessment.“The social worker last year did do a Carer‟s Assessment. I sat there crying, I was reallydown and depressed and really had to pull myself out of that because if I don‟t look after her,nobody does it. But I‟ve not had a copy of it, I‟ve phoned up and the social worker hasn‟t gotback to me, whether he‟s still there, because of the changes, I don‟t know.” MarionCarers making even modest requests for agency support to give themselves a littlerespite for whatever reason, e.g. time to study, or to spend time with their otherchildren, may go unheeded.Both the eldest (33) and youngest (19) of Catherine‟s 3 sons require care, all three live withher and her husband in a 2 bedroom house. Both her husband and middle son are out atwork during the daytime but do help care when at home. She saw a social worker for theeldest son about 8 years ago and had a Carer‟s Assessment when her youngest was aboutto start college last year. The social worker said that they were overcrowded and should buya bigger house (which they can‟t afford) and also said that there were enough people athome to provide Catherine with a break and she didn‟t qualify for any respite care.“I did apply a couple of years ago for someone to look after my son just for one hour acouple of days a week so I could help my daughter with her homework; she‟s clever, sheneeds mental stimulation and I just wasn‟t giving it to her, because when she was younger itLesley Pattenson and Steve Bedser 50
  • 51. Carers and Work – a report for Birmingham City Councilwas just totally him (her son) all the time. A social worker came out, assessed me and thensent a letter saying I was already coping really well and that I didn‟t need one.” ShaziaFurther, because of the annual reassessment, the hours offered may be reducedwith no warning making it a risky means of securing time to go to training or work.Ellie has an annual Carer‟s Assessment which focuses on how much respite time she isallowed. She used to get 29 days then it was cut to 14 but she fought to get it back to 21.“It‟s a constant battle; I can‟t guarantee I will get the same again from this April.”Lisa‟s social worker assessed that she was entitled to 39 nights a year respite but at mostthey‟ve taken 4 weeks, split between sending her husband to a respite home and goingabroad for a holiday for herself with a group of friends each year.Asked whether he had ever had a Carer‟s Assessment, Alastair said that someone hadcome and given him £250 for being a carer, for something he wanted to do for himself. “Shecame to the flat to talk to me about me. I think it‟s annual, but, it was given at a time when Ididn‟t really know what I was doing, I‟d forgotten that perhaps I could apply for it again.”14Pathway pointers There seems to be little consistency in how the assessments are undertaken and implemented. This can be a crucial part of the package which could enable carers to return to or maintain paid work so support and advocacy to get this done fairly should be included in the pathway. The pathway should direct to the appropriate source, or ideally, the lead pathway support agency to arrange for the carer to have the Carer‟s Assessment to which they are entitled and to follow it through to ensure they receive the outcome of the assessment. Carers may need professional advocacy in order to convey their needs for support which is going to allow them perhaps to invest in training for their own future development and employment and to ensure that the cared for person and any other children or family members are not disadvantaged. A joined up approach between the Children and Families and the Adult and Community Services Directorates to consider both the needs of children with special needs and their carers‟ needs as a package would be constructive.Carer support agenciesLouise had not considered any of the carer support groups or the Carers‟ Centre, (which shehad heard of but never visited) as a potential source of information about training oremployment.15Asked whether she‟s considered seeking advice or support from any of the carer agencies orsupport organisations Jane said “No, because I didn‟t know you could ask them advice onthings like that, because, excuse me, I‟m going to get emotional, [sobs], because no-oneever says anything about the carers really, you just carry on in your little world and do what14 The person he named was known to be as a PCT carer support officer, but it is not clear what the moneyactually was or how it was assessed.15 She was told about Opening Doors after the interview, as were many of the interviewees.Lesley Pattenson and Steve Bedser 51
  • 52. Carers and Work – a report for Birmingham City Councilyou have to do and get on with it for your kids. No-one‟s there to help you, well you feel no-one‟s there to help, no-one ever tells you anything, you know, it‟s like when you first find outyour child‟s autistic, you don‟t know anything, you don‟t see any information about who canhelp you, what you can do, what help there is for your child and stuff, it‟s frustrating. I‟msorry, I‟m getting emotional. You do, you just sort of get on with it, you put your own feelingslast about yourself and just solely focus on the child, and try to find the strength to cope withthem when they‟re having rages and stuff, and sometimes it just comes out like this, sorry.”On the whole, the cohort of interviewees had not considered that any carer supportagencies might be a source of information or help when it came to getting on thepathway to work. This is a significant finding as it has particular implications for thestarting point for the pathway and how it is promoted and publicised. Other agenciesmay also not view them as relevant either. If carers generally have low expectationsof levels of support and help available to them, this will colour whether they are likelyto make an approach to any sort of agency on the pathway which might be able tooffer support. And, without support for themselves and a positive attitude, they mayin any case be less likely to seek or obtain work.Pathway pointers An early step on the pathway should be about ensuring that carers have a basic level of support and have opportunities to boost their own confidence and self esteem, by referrals and signposting where appropriate. Carer support agencies should promote the range of services and support which they can offer and the pathway should have a clear understanding of this and be able to signpost appropriately.Carers‟ Emergency Response Service – CERSYee said that what would help if she did get a job, was help with her son if there was anemergency as she said that her husband could not be called upon to come home, but, askedwhether she knew about CERS, she said she did not, even though she is a regular attenderat the Chinese Carers Group.It appeared that only a few carers knew about, or were registered with CERS. Thiswould seem to be an important service which the pathway should promote, to helpprovide peace of mind for carers who are out at work.Alastair has registered with CERS; “They can put someone in on an emergency basis, soyou don‟t have to return straight away. I found out about that from a colleague.”Only one interviewee had called to use CERS, and when they did call, were told thattheir crisis fell outside the rigid eligibility criteria. The crisis has to be that the carercannot get home to look after the cared for person.Mary had a debilitating accident rendering her immobilised and unable to undertake anydomestic or caring responsibilities. She rang CERS for help but was told that they could notsend in a carer to help while other arrangements could be made.Pathway pointers All carers on the pathway, regardless of whether they end up down the full path to employment, should be routinely advised to register with the CERS if they do notLesley Pattenson and Steve Bedser 52
  • 53. Carers and Work – a report for Birmingham City Council have adequate and reliable emergency arrangements through other family members, close friends or neighbours or paid care staff. All carers‟ support groups and carer support agencies should regularly inform carers about CERS, and CERS should promote themselves widely. It could be worth reviewing the CERS criteria or make their interpretation a little more flexible. Short term crisis care would have helped not only in this situation but perhaps in other situations where a carer would otherwise have to take time off work. This could be an invaluable back-up service alleviating some of the concerns expressed by carers reluctant or apprehensive about taking on work because of potential crises with their cared for person. The extra numbers involved could be very small and within existing capacity but make a huge difference to the individuals concerned. If CERS could not be modified, perhaps some other support system could be developed.Birmingham Carers‟ CentreThe Carers‟ Centre had been appreciated as a resource by several participants.Ellie uses the Carers‟ Centre, and has found out quite a bit of information from there. Shethought it was an excellent idea to open a Carers‟ Centre, and while a lot of carers sheknows are wary about going into town, they are also on the end of a phone.Mary said that the people at the Carers‟ Centre had helped her source the course that she isdoing at the moment. “They chased it up because the application was quite difficult, theyfound out who was running the course and all the information.”However, a lot of the carers in the cohort had not heard of the Birmingham Carers‟Centre – none of the services with which they had had contact had passed oninformation about this valuable source of information and support.“Had there been a Carers‟ Centre about 10 years ago I wouldn‟t have seen it as a place togo to for help with going back to work. If people have made the effort to come to the Carers‟Centre, it‟s because they want something specific.” LauraWorking carers found that the times the Centre was open were restrictive, simplycouldn‟t find the time to go or didn‟t think it would be relevant to their needs.Jean knows about the Carers‟ Centre and other support groups but couldn‟t find the time togo as she couldn‟t fit in a visit with working full-time and her caring responsibilities for herhusband.“I‟m going to get in touch with the Carers‟ Centre, it‟s getting up there, I have to do it in themorning, [she has to start work at 12.00] and there‟s nowhere to park, I could go on the bus,there‟s always excuses.” Marion“I get a newsletter from the Carer‟s Centre. asking me if I want to do some crocheting andcard making. I did go in, I looked at leaflets on the table and asked questions but I thinkthere was no-one around at that time who could help me. The Carers‟ Centre is important tobe there but I‟m mystified as to what really goes on, who really works there and what theyreally do. The idea of going to the Carer‟s Centre and having an appointment and talking tosomebody about everything in one go, or trying to get help about everything in one go, thatLesley Pattenson and Steve Bedser 53
  • 54. Carers and Work – a report for Birmingham City Councilwouldn‟t work for me. That out-of-hours thing is also really important. How do you accessthat support? I don‟t think I really need to spend time with other carers. Activity based thingsthat they do, I can see as being useful for some groups of people, to offload to one another,but I have seen the relaxation class or yoga and thought that looks great, and wonderedwhere it takes place, in the basement? It seems very alien to me how it would work in thatspace. It‟s something that I need to find the time to go and visit again, to familiarise myselfwith what‟s there, who the staff are and what their roles are”. AlastairVera, who is a parent-carer, said “I used to go to the Carers‟ Centre, but their focus wasmore on adult care, for carers caring for adults, so not so relevant to me.”The Carers‟ Centre itself was criticised by one carer for not being sufficiently wellorganised and co-ordinated in its service provision and sign-posting.“I‟ve been a bit misdirected there. There‟s a lot of well-meaning people but very often, whenI‟ve been to look for something specific, and come out a bit confused, I‟m not sure if that‟sbeing misdirected from front of house, or if it‟s because there is just a lot of confusion overwhat‟s available, what‟s appropriate and who should be targeted. ” MaryPathway pointers The Carers‟ Centre could review the service it provides to establish whether it is offering the sort of help most needed by carers, or whether there is scope to expand, develop or tailor its services. The Carers‟ Centre could raise its profile and promote its services better including via other agencies, services and groups particularly since the Centre is an obvious resource to include within the pathway as a source of advice, support and information on wider carer issues. All agencies involved in the pathway and on the wider network of agencies, should routinely be supplied with updated information about the Carers‟ Centre, literature to pass on, and contact details. This should be offered proactively, rather than reactively.Funded carer support schemesA number of organisations had secured funding to offer support to carers as part oftheir role.Nafra had been advised by the Carer‟s Advisor at the Somali Centre that she could apply forCarer‟s Allowance and helped her complete the form. However the Somali Centre hasn‟t toldher about other sources of support like the Carer‟s Assessment, parent support groups orthe Carers‟ Centre, which she had not heard of and had not been to.Yee goes to the Chinese Carers Group which meets at the Chinese Community Centre. Shetakes part in activities such as day trips and training in first aid and moving and handling.The group doesn‟t ever talk about how to get training or work, it is mostly older carers. Shedoes not know where to go to get any sort of information that would help her family, findsthat there is not much information in Chinese that she can make use of and feels that thereis not enough information available for Chinese carers in general.Lesley Pattenson and Steve Bedser 54
  • 55. Carers and Work – a report for Birmingham City CouncilPathway pointers Organisations that offer some support to carers as just a part of their role may not be able to offer as up to date and comprehensive support as carer focussed organisations. There may be benefit in encouraging greater networking and linking in with other agencies providing carer support to ensure that they have comprehensive and up- to-date information on what is available for carers.Carer and parent-carer support groupsJane has started going to Parent Views Count meetings in the day times since she wasmade redundant, and also to her local ASD (Autism Spectrum Disorder) group. “It‟s good tobe with people in the same boat, I couldn‟t have taken time off work to go to something likethat, even though you need to go to these things and find what is going on.”Some carers identified support groups as sources of information as well as support.Catherine offers voluntary support at several support groups for parent-carers but also getshelp back.” They‟ve helped me sort out benefits, and let off steam if needed; we discuss ourchildren, while I‟ve been through and still am going through the transition with my youngest, Ido help the others with what sort of colleges and things they should be applying for, so it‟stwo way information, we‟re all supporting each other.”For some carers, whose main social contacts are other carers, friends made throughsupport groups can be an important source of emotional support and sharedinformation and experience. However when it comes to practical support e.g. suchas needed to help in the event of a crisis which might impact on the workresponsibilities of the carer, they are, almost by definition, not going to be in aposition to help, because of their own caring responsibilities.“People gravitate to those groups but they‟re not really in a position to help, and that is a kindof area of difficulty. I don‟t know anyone that doesn‟t have some difficulty impinging on themin some way and here I am needing this help.” Interviewer: “It sounds like you need someuncomplicated friends with no caring responsibilities.” Mary [Laughs] “Yes, but they‟re fewand far between, they really are! I don‟t think I‟m going to find them in the counsellingdirection or the disabilities groups.” MaryPathway pointers Carer and parent-carer support groups may play several important roles in the pathway back to work, providing emotional support, encouragement and access to information onto the pathway. Carers may not recognise the benefit of support groups and thus miss out on valuable support as well as information about additional support and access onto the pathway to work. The pathway should routinely review support mechanisms and direct to such groups as appropriate.“I‟ve been involved in disability and carer issues for donkey‟s years. Carers tend to fit intothree boxes – those who just get on with caring, don‟t ask for support, don‟t get any, don‟t goto support meetings; the second group go to support groups and meetings; the third groupare those who are „head-bangers‟ – the interesting group, who have become activelyinvolved in running these groups and carer and disability issues and politics, they becomeLesley Pattenson and Steve Bedser 55
  • 56. Carers and Work – a report for Birmingham City Councilthe change drivers.” John sees himself in the third group, and has been actively involved inlobbying and campaigning for change and has seen some progress.Pathway pointer It would be useful to identify some of the key campaigners, lobbyists and change agents amongst carers and enlist their support in developing, delivering and promoting the pathway.Condition specific support groupsMany carers meet other carers through groups organised around the needs of thecared for person.Lisa was previously part of an MS carers support group, meeting in a pub for a meal anddrink. “However the people there were all doom and gloom, everyone was moaning andgroaning, I wanted a lighter sort of night out!”, although she did find out a few useful thingse.g. her husband was entitled to a free tax disc. “My thought used to be, why waste 2 hours chit- chatting when I could be doing the ironingand shopping. I went to the Autism Group to find out more about autism. I didn‟t think I‟denjoy a support group but after a couple of months I did enjoy it. I was isolated and feelinglow and you think you‟re the only person in the world this is happening to, but you hear othercarers and their stories, and you think I‟m not the only person‟”.Even though Christine has been going to three groups for parents of children with specialneeds, they all focus on the needs of the child rather than sharing information about herpotential needs as a carer. “I‟ve never explored that side of things”. She didn‟t know aboutthe Carers‟ Centre in town or her right to a Carer‟s Assessment, which she‟s never had.“I started going to the ASD group quite soon after my son was diagnosed and it was gettingto meet other parents and see where they were in terms of services they‟d accessed. It‟sthat kind of networking. I try to look at things that are specifically directed; quite often I findthem through talking to other parents”. MaryPathway pointer Many carers will be involved in disease or condition specific groups and information pointing carers towards the work pathway should be available to and through these groups as well, while not expecting such support groups to do the work of the professionals by actually providing part of the service. Such groups should be encouraged to pass on information about carers‟ rights and support.John stressed “Support groups have a value in their own right, because they providesomeone to talk to, possible social activities, but many carers have financial needs or carerneeds and support groups might end up being expected to toe the party line, by which theofficial line is services will not be offered to carers because of lack of funding. Mostimportantly don‟t set up support groups with the aim of giving carers and the people theycare for a pat on the back. Carers have needs, make sure that there is sufficient funding andresources available to meet those needs in full. I‟m aware that BCC is in the process ofrestructuring, with the possibility of down-sizing because of cost-cutting, like the rest of thecountry. Therefore soft targets such as carers are easier to get rid of.”Lesley Pattenson and Steve Bedser 56
  • 57. Carers and Work – a report for Birmingham City CouncilMultiple support agencies and networksIn the course of the study, whether approached to help in recruitment, or mentionedby individuals, agencies or participants, we identified a very considerable number oforganisations which promoted themselves as offering help or services to carers.These are listed in Appendix 6.“Once the children are diagnosed, I think there should be a support system. We were toldthat our oldest had got this, they give you a leaflet, but no-one sits down and tells you, this iswhat you‟re entitled to, these are your rights as a parent and this is their right for education,and there isn‟t a support group. You get told about different agencies, but you phone themup and they say, well we can‟t help you with that, you need to get in touch with them, so youget in touch with this person, and this person, and you get passed around and keep goinground and round in circles.“ Christine“There seem to be an awful lot of organisations springing up and they are duplicating whateach other does, and when you look at them all there is this myriad of options, and veryoften you think „I don‟t know which to choose so I just won‟t bother today‟ and then tomorrowwill be gobbled up by something else. So there‟s a lot of confusion really in accessinginformation.” MaryThe number or possible access routes seemed very complex both to the interviewerand as expressed by some participants. With so many potential sources ofinformation and therefore so much potentially differing information and advice ofdifferent standards, quality and breadth, all seeming to act fairly independently, it isnot surprising that many carers did not seem to have got all the information whichwould be relevant and helpful.Pathway pointer Co-ordinate and develop a professional network of agencies which are involved in supporting carers and/or supporting people returning to training or paid work. This would provide a means of sharing information, identifying specialist expertise, agreeing set points for referral or access onto the pathway, providing training and for generally developing good practice. It would assist in sign-posting to specific information and individuals to help carers move seamlessly along the pathway.Informal support networksFamilySome carers indicated that they had good support from family members includingparents, partners, siblings or children who „topped up‟ the support they provided. Insome cases, with a lot of family support and some creativity this was what hadenabled them to continue working.“During the school holidays my parents had the boys Monday to Friday for some weeks andmy husband took a couple of weeks off so I could carry on working.” ChristineAlastair works flexible hours while caring for his partner, who has complex medicalconditions, pain, and is at constant risk of further damage from falls because of his epilepsy.Lesley Pattenson and Steve Bedser 57
  • 58. Carers and Work – a report for Birmingham City CouncilThey get a lot of support from both families. “His mum came and stayed, and his dad wouldstay for a few days, but really they needed watching themselves (because of their ownhealth problems, his dad recently died) and my mum and dad come over and visit once aweek and stay with him.”Jean‟s son pops in a lot and checks up on his father, makes him a drink and knows what todo if there is a problem such as hypoglycaemia. There was never a single crisis or problemwhere her husband or son needed to call Jean at work.In some cultures, family members are a significant source of support by sharingcaring responsibilities. With the wider geographical spread of family networks, suchsupport may not be available. Families and individuals recently arrived in the UKmay experience compounded difficulties.Yee, whose son was diagnosed with learning difficulties aged 2, was able to work full-time inHong Kong, in sales, before moving to Birmingham with her husband 6 years ago. This waspossible because she had a lot of domestic help and help from relatives to help look afterher children. She has no family in Birmingham, and she has not done any paid work sincecoming here.FriendsFriends can be an invaluable source of support for most people and several carerscited the benefits of going out with friends for the evening as an antidote to caringresponsibilities. However very few carers mentioned friends as helping with theircaring role (except see the following section). This could be partly because theirmain friends may be other carers.[After her accident] “I had a friend who came in for half an hour or three quarters a day andjust blitzed the mess the kids had made then she had to go. I explained this to SocialServices, on the phone, and she said, „I suggest your friend just keeps coming in until you‟rebetter, and looks after the children‟. The problem is she has two very very disabled childrenherself, and she was nipping away, coming down, helping me, rushing back hoping to Godnothing had occurred to her children. She has to physically lift them, they‟re non-verbal, theydon‟t move, she has to do everything for them, and to ask her to come here and wash up, itfelt like asking Mother Teresa to come and wash my feet, it really did.” MaryBecoming a carer can also result in the loss of friendships.“Lots of people have disappeared as well. I haven‟t seen a lot of my friends in a long time,and I don‟t know whether that‟s because they don‟t know how to approach me, becausewhen it first happened of course it was like, horror, or whether they‟re just waiting for me toget in touch, but I have lost a lot of friendships, having the time for them would be reallydifficult.” AlastairPathway pointer There could be a benefit of befriending schemes where non-carers can get to know and make ordinary friendships with carers. Perhaps somewhere like the Carers‟ Centre could introduce mixed social events convenient to carers to get to know a wider group of people who are willing to offer informal support and friendship.Lesley Pattenson and Steve Bedser 58
  • 59. Carers and Work – a report for Birmingham City CouncilFaith and cultural groupsMost carers said that they received no support from their faith community, place ofworship or religious leaders and some appeared surprised at the idea that theymight. This was true across all faiths.Sharina didn‟t consider that the Muslim community leaders or organisations might be asource of support, advice or information. “I wouldn‟t think of going to them – it never crossedmy mind, I can‟t even think of that.”“The shortest answer is that I receive NO support from my faith community, and I do meanno support. Faith communities don‟t understand what it is to be a carer.” John, a RomanCatholic with a strong faith.Nafra and her sister (who was interpreting) who are Muslims of Somali origin said “No, nohelp, they are Pakistani, we‟re not Pakistani, we don‟t get help there.”Kiran, caring for her 29 year old daughter with Downs Syndrome, gets no support from herSikh faith community. “They don‟t understand the issues or the carers‟ needs, they knownothing about that, they don‟t know how to cope with things like this, they keep disabledpeople in the house, they don‟t want people like that to meet with their children, it‟s likehiding them away from the community. I‟m not like that, I want to get my daughter out!”Amie, a Muslim originally from Africa, is not involved with the Muslim communities inBirmingham and was amused by the notion that they might be a source of support.Jean goes to church but didn‟t see them as any help. “Not the Church, they‟re not generous”.However, a Jamaican woman from another church has visited her husband every Mondayafternoon for 17 years to sing, read the bible and pray with and for him and continues to visitwhile he‟s in hospital.Several carers did however report that friends from amongst the congregation, ratherthan church leaders, had been their greatest source of support.When Anna‟s husband had a catastrophic stroke two days before the birth of their first child,even though they had only come to the UK 18 months earlier, their new friends from thePentecostal church were invaluable. “People from the church helped by looking after thebaby while I visited him in hospital. I wasn‟t driving at the time so they were taking me there,helping with shopping, cooking meals for me, they were really great.”Alastair has “An amazing circle of friends from church, a rolling rota of elderly ladies comingto visit and stay with Simon while I work and they‟re not well ladies themselves. Deidrecomes and sits from 10.00 a.m. to 5.00p.m. and I drive her home after dinner once or twice aweek, Iris and Audrey are both late 70s early 80s and they come and stay and visit him.They are our extended family. I got introduced to Simon through some of those people sowhen we got together they already knew me, they knew Simon and when his illness reallykicked in they were already there and tied in on our loop and lots of people have since beenvery supportive when we needed them. It‟s nothing to do with having a faith. I wasn‟tparticularly religious, I‟m still not, I‟m not a convert, but I do enjoy church and I enjoy the realChristian caring, loving non-judgemental people that Christian people are and I hate thisright wing connotation of hatred bitter non-gay catholic stuff. The whole sexuality issue is notan issue for that church but certainly is for other churches we‟ve been involved in and tried toLesley Pattenson and Steve Bedser 59
  • 60. Carers and Work – a report for Birmingham City Councilhelp out with groups and there has been distinct homophobia, we‟ve felt it, it‟s tangible infact, manifested in different sorts of discrimination.”In contrast, two carers had been directly helped by their own beliefs and faith.Lisa‟s husband developed MS (Multiple Sclerosis) just three months after their marriage inmid-life. She said that she has social contact at church and the spiritual support is also veryimportant in getting through the whole situation. “I believe we were brought together for areason, if he had still been with his ex she would have put him in a home.”Marion wasn‟t brought up as a Methodist, but “In 1998 I decided to give my life to the Lord, itchanged my life totally. I was suicidal thinking what‟s wrong with me. My mental attitude haschanged; I was weak, but now I‟m trying to be very strong. I do a lot for the church, but theydon‟t give me any support back for my caring role, but then I‟ve never asked. If you don‟task, you don‟t get.”Pathway pointers There is potential for raising awareness of carer issues with faith groups and religious leaders. Faith groups could be explored as sources of general support and pathways to access information for carers, a role and route which seems to be underused currently.Lesley Pattenson and Steve Bedser 60
  • 61. Carers and Work – a report for Birmingham City CouncilMOVING TOWARDS WORK-READINESSIn moving towards work-readiness, a range of support may be needed includingaccess to information, guidance and support in particular areas, opportunities forvolunteering, and access to training and education. All these were explored in thestudy, including direct experience of specific services offering support to carers toreturn to (or stay in) work.Access to informationSome participants had little idea of where to start to access information, while otherswere very well informed and actively pursuing opportunities through a number ofsources.Asked where she would go to start finding out about work options, Kiran said “I wouldn‟tknow where to go, I‟ve no idea at all, I haven‟t been to the Job Centre or anything, I just don‟tknow.”Since being made redundant last Autumn Jane has been looking for a job to fit her caringresponsibilities. She has registered at the Job Centre, goes on the internet three hours aweek going through NHS, Council, civil service and other sites that would fit, plus thenewspapers, and generally keeping her eye open when she‟s out and about.Mahmood has been looking using various sources including the Job Centre, newsagents‟windows, newspapers, Pertemps and the internet and he tries never to miss Jobs Fairswhere he can talk to employers. “Where I would go would depend on what information I wanted, I prefer to work on my own,so if I‟m looking for information the library suits me, just ask the staff to point me in the rightdirection and leave me alone to get on with it, likewise with internet. But recognising this isgreat for general information but for a specific personal situation, a one to one with a benefitsexpert is needed, not Joe Bloggs.” John“Information needs to be bite sized, able to take a bit at a time, if you‟re in a crisis, you can‟thave a whole appointment to talk about all these things in one go, you haven‟t got thecapacity to take it in as well, my brain capacity has gone, my intelligence has beencompromised by the stress of this role that I have.” Alastair“It‟s very important to give carers the information then let it sink in, or they can choose whatinformation they want to access, it‟s about signposting and finding the right path. When ourson was first diagnosed we had the support of the Children‟s Service, who helped fill in theforms for the first time, you become a carer and everything hits you, it‟s getting your headround everything apart from the illness itself, it‟s like having a baby, no-one prepares you forthe mayhem that follows. The Children‟s Hospital gave us bumph but we didn‟t look at it for 6months. You have the information but if you don‟t have it at the right time then you‟ve missedthat turning.” Laura.Pathway pointers The starting point for information will vary from person to person, information pointing people towards accurate personalised support needs to be accessible via general sources such as libraries and the internet.Lesley Pattenson and Steve Bedser 61
  • 62. Carers and Work – a report for Birmingham City Council It must be possible to continue to access information as and when needed, and as and when the carer is receptive and able to process it, not a once and for all provision of all relevant information in one go. The pathway must ensure that carers don‟t miss out if they didn‟t get or use particular information at the time it was offered so that they can always loop back into it when ready.LibrariesThe library was mentioned as a possible source of information by several carers.Asked where she would start looking for information Shazia said she didn‟t know, but thensaid she might use the library „„because they have leaflets”.Roger is a regular user of a series of local libraries which provide internet access one hour ata time, so he goes from one to another visiting several in the course of one day.Pathway pointer People need access to computers, printers and internet facilities when seeking work. Libraries could be encouraged to be a little more flexible in their rules about computer/ internet access, as an hour may be insufficient time for people seriously searching for work and developing applications, who do not have the resources to visit several libraries in one day.InternetA number of carers said their preferred starting point for looking for informationwould be Googling the,uk, is a website listing information about Birminghamagencies which can help or provide information to carers, developed by the OpeningDoors project. However the website does not show up in the top ten results if you putkeywords „Carers information Birmingham‟ into Google, possibly because thewebname does not reference Birmingham but most likely because it has not beeneffectively set up with the appropriate meta content. Furthermore the informationabout Opening Doors itself on this site is quite limited and appears to offer only verystandard, not tailor-made support. (See Opening Doors).Pathway pointer The Opening Doors website project may need to invest some resource in ensuring it has the correct meta-tags/content to bring it up to the top few sites listed for Birmingham carers, and this will be essential if it is to be the starting point for the carers and work pathway.“The teacher told me to Google for a specialist college for my son which I did, and cameback with about 2 million possibilities, absolutely none of them relevant to where we live andso on. It was a good indication of how easily you can be misled; she should have said,„There‟s a document called NatSpec and you look in that and it tells you appropriately what‟saccessible to you in your geographical location to meet the needs of your particular child.‟I‟ve found that quite often, it‟s all very well a professional saying, „Just Google it‟, but in away that‟s misinforming and misdirecting you and takes valuable time that you haven‟t reallygot, and not everyone has that instant access to the internet.” MaryLesley Pattenson and Steve Bedser 62
  • 63. Carers and Work – a report for Birmingham City Council“I‟ve looked at the Carers Association website but they aren‟t telling me anything I don‟tknow.” ValerieWebsites can only provide general information not tailored to the combination of anyindividual‟s particular circumstances.However not everyone favoured the internet even where they had access in theirown home.Shazia has got internet access, but said she didn‟t use it to try to find information. “I don‟tthink I put the right words in, because whenever I try to find something out, the right answersnever come up, it always leads on to something else! (Laughter) “Pathway pointer The internet is an effective way for the carer to access information in their own home and in their own time, but the pathway may need to specifically direct individuals to particular sites to maximise their time and its effectiveness.Informal sourcesNafra wanted to learn English very well and then take a child care course. When askedwhether she knows where to go to find out about childcare courses, her sister, who is herselftaking a childcare course, said she would show her where to apply. Nafra goes to her sisterfor information about a lot of things, and she in turn gets it from her friends. When furtherquestioned, she didn‟t seem aware of, or particularly willing, to go to the sort of places thatare actually set up to help. She preferred talking to people she knew, although her ESOLteacher was also mentioned as a source of information.Pathway pointer Many people, not just those new to the country, turn to people close to and familiar to them for information, whether family members or members of their local or cultural community. Such information is likely not to be comprehensive or indeed accurate; there needs to be a way to channel broader information and support, perhaps by ensuring that agencies such as the cultural or local community centres are kept informed of and are potentially linked into the work pathway as well as more generic caring agencies.Via service providersRoger was caring for his terminally ill father. “When I was caring I didn‟t know where to go, Ihad no idea what assistance I could get. I was physically and mentally exhausted by all thecaring. I‟d had enough.” He felt his only option was to consult his GP to find out whatprofessional help was available.“I think it‟s about bringing it back to hospital; there should be carers‟ spaces and officeswithin hospital settings and when people are really poorly, you don‟t know whether they willneed long term care but you could still have an option to go and see people in thoseenvironments who could say, „We‟re here and this is what we could offer you in thissituation.‟ If there was something dedicated to be able to show people, when you get out ofhospital, you‟re going to need a referral for this or this, it‟s not just around the carer, it‟sLesley Pattenson and Steve Bedser 63
  • 64. Carers and Work – a report for Birmingham City Councilaround what the carer can do for the person they‟re looking after, to help make the carer‟srole so much more stress free. This Carer‟s Office could help you fill in DLA forms, look atwhat funding streams are available, what information to read up about the illness the personyou‟re caring for really has, I think that the hospital really is a key place for that from myexperience”. Alastair“When I need to know something I go out and find it. I have a wonderful MS support nursewho has become a very good friend, so I would probably ask her”. Lisa“There was a time when we claimed some income support and housing benefit and [thehospital her husband was in for rehabilitation] helped us access those; I didn‟t know, reallybefore.” Anna hadn‟t seen the need to seek out any additional support or advice as a carerbut said that the hospital and community services provided for her husband had bothmentioned support for carers, so she thought that as she knew the people delivering theseservices that would be the first place she would go to for direction should she need anything.Pathway pointers Carers who have no idea where to turn to may turn to their GP or other provider of primary, secondary or community care with whom they are in contact as their first point of access to support. Service providers for a whole range of people in receipt of health and social care, any of whom might have informal carers involved, should be able to direct carers to appropriate sources of help. The pathway should ensure that information about general or specialist carer support is widely disseminated to service providers.A one-stop shop“There‟s no one place you can actually go to and say, tell me what‟s out there. Some peoplesay, go to the neighbourhood office, which is OK if you‟ve got a good one, but some of them,they‟re not very bright. Ease of access is non-existent, and that‟s for someone who‟s beenfighting for information. At the DWP you feel intimidated; you want somewhere where youdon‟t feel like a criminal because you‟re asking about attendance allowance or DLA. Weneed people with specialist knowledge, social workers don‟t have all that knowledge, andyou get good ones and bad ones. The CAB you could go to, I‟ve been sign-posted, but Idon‟t want to, you get tired, depending on where it is, how long you‟ve got to wait, and howskilled the worker is. Ideally there should be a single place with information, a one stop shop,user friendly, non-intimidating, and they have the answers to everything and can give youthe money!” ValeriePathway pointer Ideally, carers would welcome a one-stop show, pa single point of access to comprehensive information and expertise on all aspects of the caring role. Realistically other agencies will need to be involved but ongoing follow-up through a single agency would ensure that all aspects of support and advice had been provided as required.Lesley Pattenson and Steve Bedser 64
  • 65. Carers and Work – a report for Birmingham City CouncilGuidance and supportCareers adviceCarers may be very unclear about their options, and have no framework by which toassess their own interests and skills against viable options and opportunitiesparticularly if they have been out of the jobs market for a long time. Many carers saidthat they would really appreciate the opportunity to be guided through work options thatcould be open to them in their situation and with their skills.Louise had some useful help from a careers advisor a few years ago who she called afterseeing a flyer on a notice board. It is unclear who this person was employed or funded bybut it was a useful intervention.As she was not very clear about what she did want to do, Maxine said that something likecareers advice would be really welcome and useful if available.The suggestion of a „careers advisor‟ type person was enthusiastically received by Jean,who added, “with ongoing follow up not a one-off meeting”.Pathway pointer Some sort of structured personal careers interview and guidance by a well informed expert should be offered as an early and integral part of the pathway to help carers identify a suitable and achievable employment or career aspiration.Mentoring or life-coachingOnce carers have started thinking about seeking work, or undertaking training to getthem back on a work or career path, they may identify a need for more basic helpand support. There was strong support for the idea of an individual advisor or mentorwho could help people focus on their skills, experience and interests and from there,consider work options and establish basic competency criteria they would need toobtain, as well as helping them through emotional issues that might arise. Inparticular the idea of someone who would help them follow through with their planswas appreciated.“You get to a point, where, as a carer and a parent, you can‟t just stop at home for ever, youhave to do something for yourself, so as a carer, it‟s just an added burden to negotiate yourway back into employment. It would have been good at that time to have had someone totalk to that would have understood how I was feeling – I felt guilty that I thought I needed todo something else, I felt that I needed a job for my own self-esteem, my sanity, to get a lifefor myself. And I felt guilty for having that feeling. You could do with someone to tell you thatit‟s OK to want to do something else, that that doesn‟t detract from your dedication to yourcaring role.” Laura“Carers in general will have a lot of things running through their lives that will have led themto positions of not feeling particularly powerful, and I think that could be targeted bysomething like a short space of life coaching, something not too challenging, but to take theperson outside the issues of caring and get the person to look at their qualities that liedormant very often.” MaryLesley Pattenson and Steve Bedser 65
  • 66. Carers and Work – a report for Birmingham City CouncilPathway pointer There is a need for a personal interview/support/advocate/counsellor that goes through everything holistically and can help explore feelings like guilt, and affirm whatever ultimate decision the carer makes about whether they are ready to go back to work. If they do want to, they can help them feel that‟s OK and support them to get there. Marion, 63, keeps Googling information. “But I‟m thinking, who‟s going to employ me at myage, especially now. I print stuff off that‟s relevant, but I‟ve never followed it through, I‟ve justgot reams of paper, that shows my state of mind. There‟s probably things I can do, people Ican contact, places to go, I‟ve been told to go to the Carers Association. I‟d love it if therewas a person I could talk to that would follow things through. I‟d love that – once I get going,I haven‟t got a problem, it‟s knowing where to go, I must start to do it.”“An element of going back to work is getting organised, if you‟re a carer it‟s quite stressful,you are very focused on the needs of the cared for, and the rest of the family. You needsome support to focus back on your career, to find the energy and motivation. You needsomeone like a mini-life coach or a careers advisor, someone with counselling skills as well,who would give you a bit of a leg up to get you started.” “I don‟t go to the job centre, youdon‟t get the service I‟m looking for, it needs to be a bit more of a holistic approach, to sitdown and discuss areas which are possibilities then help you pursue them, that would behelpful. You need someone trained and intelligent, not just a list of courses in IT andhairdressing. That‟s something if that could be provided specifically for carers who canappreciate the situation of carers and their issues and emotions and can then give adviceand follow it up getting you started.” VeraPathway pointers An essential and critical early stage of the pathway should be the provision of an intensive one-to-one support session from someone who helps with motivation and action-planning, provides ongoing reviews and checks on progress. The roles of careers advisor, life coach and mentor could be combined.Confidence buildingLouise lacks confidence generally and thought she might benefit from some support to gether back into paid work.“When I‟ve had a bad run, and I was really stretched to my limit, I find, when I‟ve resolved allthe issues and they‟re back on their feet, I feel really really depleted. I suppose it‟s in relationto anxiety and depression, but I just don‟t have any confidence at all and I think that‟s anarea that affects a lot of carers. A lot of people that I speak to seem to suffer from that lack ofconfidence, and it troubles me that when an opportunity presents itself in the future, if I‟m ata low ebb and don‟t have sufficient confidence, will I miss it? A lot of the difficulty inaccessing college and things like that, I know in the group that I work in, I lack confidencesometimes, because it‟s as though your caring role chips away at your confidence all thetime. Yes, an assertiveness or confidence building course would hit the spot but there‟s not aremote possibility of that!.” MaryEven to get from this stage into a position of applying for training courses or jobs,there may be a need to offer a general confidence building course for carers. Severalother participants also said that they would like to access a course for carers whichwas about increasing confidence and self-esteem.Lesley Pattenson and Steve Bedser 66
  • 67. Carers and Work – a report for Birmingham City CouncilPathway pointer The pathway should direct carers to tailor-made confidence building courses for carers, or signpost and help them access pre-existing ones provided that they have been checked out as being sensitive to the needs and perspectives of carers.Language supportSeveral of the carers interviewed did not speak good English, two were interviewedthrough interpreters. To give any sort of reasonable choice of work options, Englishwill be a pre-requisite. However, attending training courses alone is not enough,practice is required.Yee had studied ESOL for two years at an Adult Learning Centre class but the course hasfinished. Although she clearly understands some English, she is not at all confident speakingEnglish, but now has no chance to practice it because she is totally isolated at home, andshe relies on her husband to source any information.Pathway pointers Most non-English speaking carers moving to the UK would benefit from opportunities to improve their English. Whether this is sign-posting to a course or to ongoing opportunities to mix with English speakers in carers‟ groups or voluntary settings this can only improve their chances not only of getting work but of taking more control over services provision and decisions for the cared for person as well. Where language is a barrier, it may make sense to divert the pathway to a service which has access to interpreters (either a community centre or the Job Centre Plus, which funds them where necessary).CV development and job applicationsMany carers expressed the view that they had accrued considerable experience incaring yet were concerned that these skills would not be recognised by employers.As well as general help in format and presentation of CVs carers may need specifichelp in recognising and presenting the skills and experience gained through caring.“I‟ve never been a nurse yet I was peg-feeding, giving morphine injections, changingdressings and bandages as well as coping with the schizophrenia and dementia on top. Itwas very challenging. I‟ve been on panels with psychologists, who valued my input, so I feelI‟ve done a lot but I‟ve never been accredited for all these things. We carers do a lot, but if Iwent to University and studied we would be accredited yet I‟ve done nursing as well as care.I haven‟t got a CV, but I‟ve done lots of things but it‟s not on paper to say that I‟ve donethem.” Maxine“There are opportunities for people who do a lot of hands on care, who could transport thatinto a paid role, but they haven‟t got the piece of paper that says they can do that. If you‟recaring for someone with complex care needs, you must be brilliant at organising, multi-tasking, you have all those skills, but those skills aren‟t qualifications.” LauraLesley Pattenson and Steve Bedser 67
  • 68. Carers and Work – a report for Birmingham City CouncilPathway pointers Any practical or home-based learning which could be taken with the minimum of time outside the home to consolidate caring skills (and for current carers, enhance the care delivered at home) should be identified and carers helped to access it, including meeting any cost implications.16 Support and guidance may be needed in terms of how best to draw out transferrable skills accrued through caring (and volunteering) and present them in a CV or application form as marketable work skills.Other supportMahmood would like the reinstatement of previous support such as free suits for interviews,free laptop and the incentive of £600 for staying in a job for so many months, all apparentlynow discontinued and also suggested carers should be provided with free bus passes.Pathway pointer If there are any schemes providing additional support whether for carers specifically or any people trying to get back to work, the pathway should be up-to- date on them, and include information about how to access to them.Unpaid work/ VolunteeringVoluntary work provides an excellent opportunity for carers to develop confidenceand additional skills, and provides a route to getting back to the discipline of theworkplace, and in some cases, direct opportunities to transition from unpaid to paidwork within an organisation.General voluntary workMahmood does a lot of voluntary work, since he is free in the day times when his mother isat day care, as well as job seeking and accessing training geared towards caring for hismother and his voluntary work. This includes an escorting and supporting Asian familymembers to visit male relatives in prison, and being on the executive committee of a deafchildren‟s group, a credit union and several carers‟ groups. He recognises that theknowledge and skills acquired through this voluntary work should strengthen any attempts toget paid work but this is a spin-off not main motivation.Although Maxine hasn‟t worked for a while she has done lots of voluntary work with mentalhealth services and charities including chairing meetings and being on inspection panels andforums. She‟s worked directly with carers and users through consultations, workshops andforums and could use all this experience to get good references. “I used to like going tomeetings, it was like respite from my mum, it was nice to go out for 2-3 hours, just differentscenery, when you‟re with someone 24 hours a day, dressing, washing, it‟s just a differentenvironment.”Yee, who is not confident in English, would consider doing voluntary work with the Chinesecommunity if she knew how to get it. She goes to a Chinese Christian Church and the16 Crossroads run some courses e.g. lifting and handling, but is there scope for accredited units to be offered bythem or elsewhere?Lesley Pattenson and Steve Bedser 68
  • 69. Carers and Work – a report for Birmingham City CouncilCarers Group at the Chinese Community Centre but these do not appear to have pointedher to either unpaid or paid work opportunities.Pathway pointers An important step is to have sound advice and guidance both on the benefits of volunteering and on how to go about it where carers are not already engaged in any such unpaid work. Access to information about volunteering opportunities needs to be available through different cultural and language routes linked into the pathway.Carers see a big difference between voluntary work and paid work in terms of thelevel of commitment and responsibility. This has both pros and cons which wouldneed to be considered in discussion about taking the volunteering route.“Because it is voluntary I have the flexibility to not go in if I have other things to do for my sonor daughter”. Shazia“With volunteering, there isn‟t the expectation on you to be there 9 – 5 – it‟s a flexible way oftesting whether you could commit to a job. It breaks you in gently, there is a responsibility,but because you‟re not being paid, you give what you can. You say what you can fit in andoffer, it‟s a stepping stone.” LauraHowever the ability to leave voluntary work easily is also a disincentive as it does notprovide the commitment of paid work.“I‟m involved in a lot of things, there is that flexibility, although people rely on you, there isn‟tthat pressure on you.” Although, “The voluntary work is not enough, if something happenswhich stresses me out, I tend to give up and then I feel quite bad, this is why paidemployment would be better, with voluntary work it‟s easy to give up and then you don‟t feelas much commitment as if you‟d signed a piece of paper.” VeraVolunteering in a workplace settingLaura had been volunteering for an organisation for 5 years and had already been given thechance to manage a specific project. “Other people saw what I could do and the skills I‟d got.I noticed my own self-confidence increasing. I was no longer just my son‟s mum/carer, I wasable to show what I could do. People gave me a bit of respect, which I felt had been lacking.”Then a couple of funded posts came up. “Because of the experience I‟d got I got one. Thatwas a big factor, the fact that I‟d been working for them. I had good references off people I‟dworked with so that all went to getting this job. I‟d recommend anyone to do voluntary work,and not look at it as „something for nothing‟ because there is the opportunity to getsomething for yourself out of it. In my case, I don‟t know where I‟d be now, if I hadn‟t donethis. It opened doors for me.”Pathway pointer People can be encouraged to take up voluntary work which can consolidate or develop skills, boost self-confidence, provide opportunities to take on greater responsibilities, plus be in the right place at the right time if paid jobs come up.Shazia has been volunteering in her son‟s school for some years, and the school asked ifshe would like to take an NVQ Level 2 as a supporting teacher in the classroom, which sheLesley Pattenson and Steve Bedser 69
  • 70. Carers and Work – a report for Birmingham City Councilaccepted. This is a classroom based course with additional self-learning at home, which isalmost completed, and she‟s had some positive assessments from external assessors in theclassroom. “I‟m just doing Level 2 as I‟m doing voluntary anyway, I don‟t think I‟d be doingLevel 3 as it‟s £600.” Prior to the school‟s suggestion, Shazia had not thought about doingany courses leading to paid work but she is now considering classroom support as anoption. However there is a financial barrier. The school will only appoint people qualified toLevel 3 NVQ but she cannot afford the fee, and the school will not fund her, thus creating aCatch 22 situation, with both Shazia and the school missing out.The cost of courses is a barrier for carers who are not working, but there may bepotential for some creative solutions to financing.Pathway pointer Potential opportunities to finance courses by employers on the basis of repayment over a period from wages during a compulsory conditional period of paid employment could be explored as could the possibility of sourcing no or low interest loans underwritten by the Council.Unpaid work placements as part of a training courseAs part of her counselling training, Mary had a two year placement with a mental healthprovider. “I found a lot of therapists would come to me, they knew that I had children withautism. It was really successful, it was very valuable experience. There came a point wherethe manager said it would be possible for me to stay on as a paid employee, butunfortunately at that time I was in the thick of it with my eldest son, and my youngest sonwas beginning to have his difficulties at school, so it just wasn‟t viable.” MaryBeing known to a service through work placements, work experience, or voluntarywork within an organisation may open up opportunities for paid work with theorganisation in the future (subject to caring responsibilities permitting).Pathway pointer The pathway should explore opportunities for work placements, work experience and volunteering in a workplace setting, as they also present a chance for the carer to trial balancing the practical and emotional demands of working and caring without being committed to a longer term arrangement.Education and trainingPrevious educational attainmentInevitably, previous level of education influenced both the sort of work carers feltrealistic to aspire to, and their views on additional training or education they mightneed. Although no young carers were interviewed, several participants had startedcaring while still at school and this had impacted negatively on their education andhence future work potential. (See also Age)“I wish I‟d done lots of qualifications at school, but because of my mum, I couldn‟t.” Maxine,carer for 40 years, since aged 9Lesley Pattenson and Steve Bedser 70
  • 71. Carers and Work – a report for Birmingham City Council“I left school with one O level and 5 GCSEs which in itself was a miracle because schoolwas somewhere I went to eat, and recover from looking after people because all of my familywere ill, so I left school at 15 as soon as my exams were finished.” Mary, who has cared formany family members since childhood, is now taking a counselling qualification and OUdegree.Pathway pointer Young carers and former young carers whose educational attainment at school have been compromised by their caring duties, are likely to be disadvantaged in the work market and may need specific extra help to reach basic educational standards (e.g. in numeracy and literacy) by accessing training as adults to prepare them for work.TrainingObviously not all carers feel the need for additional training or are able to keep up todate in other ways.Mahmood has not attended any training geared at getting people back to work and does notfeel that he needs any. He says he already has leadership skills and has actually deliveredtraining on interviewing skills when he was a manager. He has also been part of an IThelpdesk and keeps himself up to date with developments in word-processing andspreadsheet software.Others have the basic skills but need some updating or refresher courses.Marion has been using IT systems and has been through various training courses, but “Ifyou don‟t use it you lose it. I have done it, it‟s just touch up courses I need, I know aboutthem but not all the intricacies. A brush up on some IT would be perfect. I enjoy training.”Some carers had taken pro-active steps to plan their pathway back into work, byidentifying and undertaking training courses. However carers may be concernedabout starting training courses because of fears that their caring demands mayprevent them from completing the course.“I was a single parent with four children, on benefits. During that period I went to college, Irecognised the fact that at some point I would need to work, my husband wasn‟t supportingus, so I did an office skills course and a teaching qualification, because I thought that wouldfit in nicely with the children being at school, and give me the flexibility to fit in with my son‟sneeds. I found it difficult to commit to the college course, that was the first step, I keptthinking, „What if my son‟s ill, and I can‟t go to college?‟. You have all these conflictingthings, but I just went for it, I thought, „If a problem arises, I‟ll work round it, I‟ll cope with it‟,but it‟s having the confidence to do that.” LauraEllie has looked into going to college to take computer courses, the barriers are the costsinvolved, and the fact that she might not be able to attend if the day centre was closed or herson was ill or had a crisis, and she would miss out on the course and waste her money.Access to training often has financial implications. Lack of money was often cited bycarers as the reason for not pursuing courses that they would have liked to do.Lesley Pattenson and Steve Bedser 71
  • 72. Carers and Work – a report for Birmingham City Council“Financial help with retraining would be a good thing as an incentive, like a student loan”.Vera“I haven‟t done any training for myself, I wanted to do an NVQ2 and 3 in mental health, but Ijust have my Carer‟s Allowance and couldn‟t afford it, it was nearly £800. I wanted to doOpen University but just couldn‟t afford the fees.” MaxinePathway pointers Carers may need to be directed to basic training, refresher courses or more specific training. The pathway needs to be able to identify sources of financial support to enable carers to take up appropriate training. For a low investment, a pilot scheme could be established to offer interest free loans to carefully selected and prioritised carers repayable once earning and hence financing future loans.Guidance on accessing trainingOrganising self-directed training on top of caring responsibilities can be dauntingparticularly for carers who have been out of education for many years. Some carershad an idea of the work direction they were interested in but would benefit from helpto clarify what they are aspiring to, the reality of what would it would entail and whattraining would be needed.Yee would consider training to get a job. She likes babies and young children, and wouldthink that baby-sitting17 or helping in a nursery during the day would be appropriate becauseshe would not have to talk to the children, the children wouldn‟t understand Chinese. Thereis no existing Chinese nursery, (we joked, she could set one up).Mahmood referred to Birmingham Care Development Agency and what he described as redtape making it difficult to access courses which were designed for carers. In fact, this may bebecause its function is to support employers providing care services, not informal carers.Other carers had very clear work aspirations but were frustrated by the failure ofprofessionals to direct them to the correct training course to acquire the necessaryqualification. A slack attitude on the part of the advisors can have a negative impacton the carer and a poor outcome.Jane discovered that competence in SIMS or CMIS software was essential for the schooladministration jobs she wanted to apply for, but was unable to find a college course thattaught it. “They just do basic IT, and also on Learn Direct. Knowing where to go to get help,professionals don‟t seem to know where to get an answer, or suggest ‟Try this‟. They needtraining on their part as well, if you‟re in that position, you‟re not out of work by choice, it‟s abit of a dead end.”Having been directed towards volunteering with numeracy skills in adult education, Louisetook a stage 2 qualification as a teaching assistant in this area. She very much enjoys thiswork but does not want to train as a teacher leading the class. However, she has hit a brick17 Not entirely certain that this was appropriate translation of what she said by the interpreter.Lesley Pattenson and Steve Bedser 72
  • 73. Carers and Work – a report for Birmingham City Councilwall when it comes to finding out both what qualification she needs to be eligible to apply forteaching assistant posts in adult numeracy and also where such posts are advertised.18 TheJob Centre staff, while reported as helpful and well-meaning, simply did not have theanswers to the specific information that she was seeking. She has tried the internet, librariesand asking people she comes into contact with but has still not tracked down the preciseinformation she needs. The lack of a clear path to access this information seems to beLouise‟s main barrier to progressing her chosen career.Conversely, wise counsel and encouragement from someone who understands theconstraints and potential of carers can be invaluable, leading to positive outcomes.“I did the „Computing for the terrified‟ course a couple of hours a week, and it was onlythrough talking to the lecturer there that I was encouraged to do the office course, which wastwo days a week. It was about being honest about what your circumstances were, and whatyou could commit to. If I hadn‟t told her about my caring responsibilities and the lecturer toldme about that course that would fit, what would have happened was I would have got a part-time job at Asda, probably”. LauraPathway pointers It is essential that carers can access expert guidance and advice to clarify job roles, identify necessary qualifications and access appropriate training courses. Referrals to other agencies or enquiries on their behalf must be a part of the pathway. It is very important that there is an advisor who understands the circumstances and commitments and concerns of the carer, as well as having a good knowledge of available and appropriate training opportunities which fit with availability, and can match accordingly.Adult Education Centres and coursesCarers may be particularly dependent on accessing courses at their local AdultEducation Centre. These appear somewhat unreliable since they are dependent onsecuring sufficient numbers enrolling on a course for it to be viable. Emphasis onfilling classes rather than ensuring that courses meet the needs of participants mayimpact negatively on individuals.Shazia gets the Adult Education Directory and joined a course at her local Adult EducationCentre to improve her literacy. She thought she‟d enrolled on an English course, but they puther on an ESOL course and she ended up helping the tutor with the other students; peoplestopped coming and the course ended after a couple of months.The volunteer advisor at the Adult Education Centre Louise offered Louise advice andsupport and sourced her Stage 2 teaching assistant training course. She also accessed hera stage 3 course but it was cancelled at the last minute due to lack of numbers taking it.I did the introduction and Level 1 of a counselling course, but Level 2 just didn‟t happen; youonly get the qualification certificate after completing Level 2. Quite a few of us went back anddemanded a certificate but we didn‟t get it.” Shazia18 Googling this theme does indeed come up with a blank.Lesley Pattenson and Steve Bedser 73
  • 74. Carers and Work – a report for Birmingham City CouncilIt takes a lot of practical organisation and personal determination for many carers tobe able to access a course away from home in the first place, setbacks caused bythe inadequacies of the general education system may knock confidence anddetermination to progress.Pathway Pointer Carers need wise counselling and support to access courses that meet their specific educational aspirations and goals and are most likely to deliver sustainable high quality courses and achieve positive goals.Open University (OU)Open University, being home-based and flexible, may be ideal for many carersprepared to do some serious study and attain more recognised qualifications,although there are of course cost considerations which may be restrictive.Jane was about to start an Open University course, having seen an advert, sent off for aprospectus, and spoken to a representative at an open day at her local library. Hesuggested a 20 week introduction course on understanding children, which provides tenpoints to any other course. “I‟m itching to start. I want to get my teeth in and get going – I‟mreally looking forward to that to stop my brain going to jelly, since I‟ve been off work. I don‟tknow, I might decide to go onto a diploma, I‟ll play it by ear, see how it fits in, if my son hasissues. It might not work if I‟m trying to do a proper sort of course, and he comes first.”“I‟ve done quite a few courses with Open University and found that invaluable, regardless ofwhat was going on and needs had to be met, I could study in the middle of the night if I hadto, or take my books to hospital, that was great because it gave me a growing sense ofachievement. I saw the OU course as a route back to normality for myself, something I coulddo just for myself, to give myself some sort of sense of achievement and to test out where Iwas educationally. I didn‟t really have much of an idea of whether I was studious – you canget entrenched in caring responsibilities as a carer, your world can become a very smallplace and you don‟t really have anyone reflecting back to you what your achievements are oryour potential is, so that‟s a very big unknown, so the OU helped me to determine that Icould study and achieve qualifications.” MaryPathway pointer The pathway should help and encourage carers, particularly those with variable demands and time restrictions, to consider a course of home-based learning such as OU, which they can fit round their responsibilities. They should be directed to any sources of financial support which could enable this.Lesley Pattenson and Steve Bedser 74
  • 75. Carers and Work – a report for Birmingham City CouncilEXPERIENCE OF SUPPORT TO GET WORK, OR WORK-READYOpening Doors for Carers (Crossroads) ProjectThe Opening Doors for Carers is a project funded by Birmingham City Council andmanaged by Crossroads. It is currently based in the Carers‟ Centre and has threestaff offering support to carers wishing to access education, training or return toemployment.Marion prefers to speak to someone to get information. Having picked up a leaflet about theOpening Doors service, she rang them, but got the impression it was more for getting peopleback into work than people in her situation [she is currently working but knows she will bemade redundant within the next few months]..” I was trying to get some information, but sheasked if I would be interested in doing this survey. [i.e. this study]. Obviously leaflets andstuff, but you still need someone to speak to that can guide you through these things. It‟sknowing who to go to, people say, „Oh yes I‟ve used them and they‟re brilliant‟, or,‟ Oh no,they‟re no good‟.‟Apart from a couple of carers referred from Opening Doors to the study, very fewcarers seemed aware of this project, or did not believe it could offer the help theyneeded.19Ellie is aware of the Crossroads Opening Doors project but believes that their focus in onrunning courses to teach people how to use the computer, and didn‟t think that they wouldthey be able to help her accessing courses.Pathway pointer The existence of the Opening Doors service presents an ideal opportunity to redesign an existing service to meet the needs and preferences for support identified by many of the carers interviewed. There may be a misconception about the purpose of Opening Doors, and certainly there is a serious lack of awareness amongst carers which needs to be addressed through co-ordinated publicity. Even the June 2010 leaflet „Support for Carers‟ produced by BCC‟s Adults and Communities Division fails to reference Opening Doors although it names several other services and groups operating from the Carers‟ Centre.Job Centre Plus (JCP)The Job Centre Plus20 had „mixed reviews‟ from participants both in terms ofperception of the service provided, relevance to their needs and their experience ofusing it.The first place Jean would consider going to for help accessing work would be the JobCentre. She also mentioned the CAB (Citizens Advice Bureau) but then reflected that shedidn‟t think they would be able to help.19 However a number of participants were referred to it at the completion of their interview.20 Most participants referred to Job Centre Plus as „the Job Centre‟.Lesley Pattenson and Steve Bedser 75
  • 76. Carers and Work – a report for Birmingham City CouncilHowever a number of participants did not immediately consider that the Job CentrePlus would have anything to offer them in terms of moving towards work.Ellie hasn‟t ever considered going to the Job Centre for help; what puts her off is that theywould expect her to be available for work, and she could not give the commitment of beingreliable. She was unaware of the Carer‟s Champion initiative at Job Centres Plus.Others mentioned the Job Centre Plus but had reservations about going there, orabout what help would be available.Marion hasn‟t had any contact with Job Centre Plus, and had never thought about that,because “I‟m not yet specifically looking for a job yet, but will be a little further down the line,so that‟s not an immediate option.” [She does not want to miss out on her redundancypayment by leaving for a new job before her employment finishes]“If I‟d felt confident to go the Job Centre and say, „I‟m looking at starting this business‟, but Ididn‟t want to because they were an authority. If I‟d have gone to them, and then decided notto, it could have been held against me, „She could do this, but she‟s not going to, she‟s goingto stay on benefits.‟ Laura“Ideally the Job Centre, but I‟d have reservations about going there because they ask foryour details; I‟d be willing to give them but because it‟s on the system that I‟m looking forwork, then they‟d start pressuring me, questioning me, pestering me.” SharinaPathway pointers Job Centre Plus needs to promote its image as a more supportive and less authoritarian institution if it is to succeed in reaching out to carers (and other people) seeking support in returning to work. Many people in the current economic climate are anticipating redundancy or the ending of contracts. It would seem to be a sensible move to try to plan ahead and find out in advance what help and support in accessing work in the future they might be able to call upon. The JCP advisors can not normally support people working fewer than 16 hours per week, but if a person has received formal notice of risk of redundancy they would be able to offer help. For carers who are more generally considering a change of work to fit with caring responsibilities, another agency without such restrictions may be more appropriate.Of those who had experience of using Job Centre Plus, while some found themsympathetic and helpful, there were a number of examples where staff appeared tohave no understanding, or take little notice of the needs of carers.When she did start full-time employment, Laura said that the Job Centre were very helpful.“They did all the paperwork for finishing the Carer‟s Allowance, and the transition from beingat home on benefits, to being in employment, the support with money for starting work, andfor the first 12 months I got an extra sum a week because I was over 50 and I was returningto work, so there were incentives, they worked out all the tax credits, the child tax credits,and helped me fill in the forms, that really helped. If I hadn‟t been called for that interview tothe Job Centre, I wouldn‟t have seen the Job Centre as a place to have gone to for that sortof help, I‟d have just carried on on the benefit till I got the job then I‟d have had to do all thatLesley Pattenson and Steve Bedser 76
  • 77. Carers and Work – a report for Birmingham City Councilpaperwork and all of that myself, and I wouldn‟t have had all that support as well as thefinancial support as well. I wasn‟t expecting that from the Job Centre, I can tell you!”“I did go and see social services at the Job Centre about 2 years ago when I had to give upat the hospital and they were very understanding.” ChristineSome people asked for specific help but their requests were ignored.Jane told the Job Centre Plus that she‟d never written a CV and didn‟t know where to start.The person offered to arrange for help and said that someone would ring her, but they neverrang back. The next time she went in and asked why she was told that they didn‟t normallyprovide that sort of support. She was also keen to take whatever training courses would helpher back on the path to work, but hasn‟t studied since she left school 19 years ago. She toldthe Job Centre Plus staff that she was worried because she didn‟t know how to learn. “Theydidn‟t say anything. You‟re supposed to be the expert, I‟m asking you things and you don‟tknow and can‟t point me in the right direction.”Pathway pointer If Job Centre Plus staff don‟t have the skills and knowledge needed to support an individual they should signpost them to a service that does.Some parent-carers had accessed support and services under lone parent initiatives,but these did not seem to have taken into account their caring roles or the reasonsfor their current unemployment status as being as a result of prioritising their caringrole rather than necessarily reflecting an underlying skills deficit.Laura had interviews with the Job Centre Plus over an 18 month period as part of the loneparent initiative. “I was worried and nervous, and didn‟t want to go, thinking, „Are they goingto make me do this, take this job, cut my benefit?‟, but I was pleasantly surprised. Thesupport I had was good, I had my own advisor who was really good, I don‟t know if I was justlucky but she was a very good listener as well and was supportive. They did all the workingout of whether you‟d be better off and took into account allowances like clothes for interviewsand refunding of bus fares etc. They were very understanding and did try and support mebut they didn‟t really take into account that I was a carer, that wasn‟t really brought into theequation, all they were concentrating on was that I was a lone parent, that was the realemphasis, because that was flavour of the month, the target audience at the time.”“I did attend something that was set up by the Job Centre years ago for single parents. Itwas supposed to be a week long course to do confidence building and assertiveness skills,but I was absolutely appalled at the level they‟d pitched this course at, I thought, God, I‟mnot that badly off, it‟s as if they‟d missed a lot of their participants, it was aimed at peoplewho were very very de-skilled and probably had other problems too. I felt a certain amount ofstigma was attached to attending, it just really wasn‟t helpful, something needs to be aimedat people more specifically.” MaryPathway pointers Schemes directed at unemployed people because of one aspect of their situation need to take a broader, whole person view of the situation. Job Centre Plus may organise or direct people to courses to help them back to work or work-readiness. Carers who are out of work not because of a lack of their own abilities but because they have prioritised their caring role over employment, may have different needs and perspectives from some unemployed people whoLesley Pattenson and Steve Bedser 77
  • 78. Carers and Work – a report for Birmingham City Council will benefit from a more basic level of support. Courses may be best delivered if specifically targeted at carers.JCP staff may not be establishing whether the people they are serving are carers, ortaking into account the implications of their caring role. This can in extreme caseslead to significant but totally avoidable distress.Amie went to the Job Centre Plus for help, though said that she was not signing on but got„employment and working allowance.‟21 She said that the Job Centre Plus staff were helpful,reported that she had been told that if she worked more than 16 hours her benefits would betopped up but also said that they had „Told me to go and find a job!‟ However she had nottold the Job Centre Plus about the implications and demands of having to care for her sonwith special needs, and had not recognised that there may be specialist support for carers.The Job Centre Plus rang Jane to tell her to apply for a job the other side of Birmingham.Without a car, it would have taken her an hour and a half to travel there impacting on thetimes she needed to be at home to support her son. It also required shift work and unsocialhours, all of which she had already explained were untenable for her situation. “I‟ve alreadysaid, I can‟t do that, it‟s like they don‟t listen or look at the system, it says on their system,„caring responsibilities‟.”“Even when I went to the Job Centre at Broad Street a couple of times, 3 – 4 years agobecause I was really fed up, they weren‟t very helpful, you know, they said, „Would you beable to with your caring responsibilities?‟, „Why do you want to go back to work, you‟ve got afull-time job as it is by the sound of it!‟ But it gets a bit tedious when you‟re doing the samething day after day so even 2 days a week away from that environment would help. Theyweren‟t encouraging at all.” MaxineMary had an appointment with Job Centre Plus, but “I had a problem because my youngerson had suffered a breakdown because his special needs package had fallen through andhis personal tutor had been seconded elsewhere which left him without his support. Hestarted to flounder and he became very ill and I had to remove him from school. The daybefore my interview I phoned up and said „I‟ve got a very sick child at home, I can‟t attend‟,and she said, ‟Let‟s reschedule for next week‟, and I said, „I‟m not entirely sure that by nextweek he‟ll be better, I can‟t predict how things are going to be with him next week‟, and shejust thought I was being avoidant and difficult. She said „Bring him with you‟ but you can‟tbring someone who is suffering a breakdown into a Job Centre and just say, „Now you justsit there‟. I was stuck here with this sick child, who nobody really could advise me what todo, so I was stuck in this situation on my own. I was needing to go for this interview, and Iwas trying to explain to people, it just seemed completely absurd, so I said „I need to speakto your manager, you need to understand that this is preventing me from coming forinterview. The outcome of the interview is going to be quite negative because I‟m just goingto say, „Look I‟m stuck at home with this child 24 hours a day, and I‟m not available for workanyway.‟ They said, „You can‟t really make that decision.‟ Anyway, we had this very abruptconversation and afterwards I had a terrible terrible panic attack. I went to the doctor‟s and Iwas crying uncontrollably and it took me ages to calm down. The doctor said, „What‟s theimmediate problem?‟ and I said „It‟s the Job Centre‟ and she just found it incredible that I hadgot into such a state. It was the tip of the iceberg, the last straw.”21 Assumed to mean the new „Employment and support allowance‟ which replaces incapacity benefit forclaimants since 2008 and helps them get back into work. If this is the case she should be getting a range ofsupport from a personal advisor.Lesley Pattenson and Steve Bedser 78
  • 79. Carers and Work – a report for Birmingham City CouncilPathway pointers Since some carers barely seem to recognise their status as a carer and that as such they could access certain resources and support including, since January 2010, the Carers‟ Champion, JCP staff should help make any caring responsibilities explicit by ensuring that appropriate questions are asked in all interviews. All Job Centre Plus staff should establish whether their clients have any caring responsibilities so that they can be appropriately directed to the Carers‟ Champion and not rely on the carer being aware of and requesting this service.Overall it appeared that Job Centre Plus has been offering an inconsistent service tocarers. While some individual staff have been cited as being particularly helpful, itseems that other staff didn‟t have any awareness about the restrictions carers mayexperience in seeking work, or even if they did and they were supportive, they didn‟thave the means or information at their disposal to guide or advise carers.The study took place shortly after the introduction of Carers Champions in January2010, so most reported experience took place prior to that although Valerie, whovisited in March, had not been told, or seen any information about them.Pathway pointers The Carers‟ Champion role should be promoted prominently within all Job Centre Plus offices. Carers‟ Champions will also need information from employers about carer-friendly working arrangements and policies to enable them to direct carers to suitable positions.Experience with other agenciesIngeus / Work DirectionsSeveral interviewees had been directed to schemes run by Ingeus which they hadbroadly welcomed and found to be helpful. The model of a combination of one-to-one assessment, support and encouragement, practical support and access totraining seemed to be appreciated and reflects a number of elements identified aspertinent to the pathway.“I was lucky because I‟m classed as disabled myself, I was sent a letter from „WorkDirections‟22 about two years ago. They helped me compile a CV, look for work, fill inapplication forms and do various things for you. Once you‟re with them, you can join a gymfor free, do walks and things, it‟s a good organisation. You have to attend 5 sessions, and ifyou don‟t find work, they don‟t end it, they see you every 6 or 8 weeks if you want moresupport.” Catherine“When I first lost my job I was contacted by Work Directions and I did go and see a very niceyoung lady there and talked about my problems and what the boys were like, and decidedthe best thing I could do was be a carer for a while, they take up so much of my time. Shedid my CV and a couple of times she was my counsellor because I just went to pieces and22 Managed by Ingeus: Pattenson and Steve Bedser 79
  • 80. Carers and Work – a report for Birmingham City Councilshe advised me to go back to my GP. I ended up going for about 10 weeks; overall it was apositive experience. I wasn‟t ready to go back to work, but she did say that if I needed helpin the future, I should contact Work Directions.” Christine said that she found the one-to-oneapproach helpful, and would consider getting that sort of support again if it was available.Job Centre Plus referred Roger to Ingeus for support (access to printer, paper, phone etc.along with CV development, training courses and personal mentoring). He found this supportvaluable, but said that the drawback was that it was only provided for a fixed six week periodand felt it should be ongoing as needed until people found work. (Roger, as an ex-carer, maynot have qualified for ongoing support).Pathway pointers Tailored services offered by organisations such as Ingeus are helpful but limited if support is only available for a short fixed period. However, the DWP has contracted Ingeus to provide ongoing, flexibly delivered support to particular groups of unemployed people including carers and lone parents. This type of package of support tailored to the needs of the individual, including open access to further support if needed, could offer a model for, or form part of, a pathway to work for carers.Lesley Pattenson and Steve Bedser 80
  • 81. Carers and Work – a report for Birmingham City CouncilCONSIDERATIONS FOR CHOICE OF EMPLOYMENT FOR CARERSThis section reflects initially on the type of work being sought by carers and thenconsiders factors related to the employment which impact positively or adversely onthe ability of carers to gain or retain employment.Type of work soughtOften the career path which carers expressed an interest in was different to thatwhich participants had undertaken prior to caring. Often, their caring experience hadinfluenced their future aspirations.Margaret has brought together a group of carers and disabled people who have pooled theirDirect Payments to establish a cafe offering a meaningful day experiencing catering andcreative arts.”“The only paid work I‟d consider, what we‟ve created, could be a catalyst formore things like it across the city, I‟d love someone to say, “We would love you to do acouple of days work and bring something of what you‟ve brought there, and to be trainingand encouraging people to be creative with Direct Payments. So, yes, that would be mydream job!”Educational assistantsSeveral of the parent-carers were considering formalising roles such as classroomassistant which they had been undertaking on a voluntary basis.Catherine said “It would be lovely to get permanent regular work as a learning disabilitiesteaching assistant, because I still need to be at home during the school holidays”. She hasbeen applying for lots of jobs, but with no success. She said that the special schools ask forexperience, and the mainstream schools require qualifications (which she hasn‟t got). “WhenI fill in an application form I put down exactly what I do caring and in the voluntary sector, butyou‟re sort of penalised if you do that because they write back and say „are you over-qualified?‟ and I‟ve had that back a few times.”There appears to be a double bind that on the one hand, the wealth of skills andexperience carers accrue through caring is not recognised by employers because itis not a paid position or a qualification, on the other hand, they may be consideredover qualified for the type of part-time, non-career, low paid posts that their caringresponsibilities mean they are restricted to applying for.Counselling and therapeutic rolesA number of carers expressed an interest in, or had already undertaken, sometraining in counselling skills, and would like to pursue a career in counselling. Thiswould have potential flexibility in terms of arranging appointments, depending onwhat route this was delivered through agency, statutory service or independently.Catherine took a basic counselling course a while ago and has recently enquired about afurther counselling course. This is not a relevant course for obtaining permanent work as aclassroom assistant although she said she thought it would help her do counselling and offersupport to parents of children with special needs or learning disabilities. However she coulduse it in an unpaid capacity as part of her voluntary roles which she already has withLesley Pattenson and Steve Bedser 81
  • 82. Carers and Work – a report for Birmingham City CouncilLinkUpp and Face to-Face which are both groups for parent-carers. So while this is mostlyvoluntary she also hopes it might lead to paid work. She thought it more likely, at her age,that she could earn money through counselling than as a classroom assistant, where shethought they liked to get the staff young to make the most of them. “I‟ve done a variety of counselling qualifications and am now hoping to complete thisfoundation degree in counselling which will enable me to go to work and by the time I‟vedone that I‟ll be a qualified psychotherapist; I would hope to work in the health sector insome way possibly with adolescents like my children, because I feel I‟ve got quite a lot ofexperience and it might be helpful to someone else”. Mary‟s future work aspirations havebeen firmly shaped by her caring experience for three generations of her family (including aschizophrenic mother and several children with behavioural problems), her desire to helpand her interest in „what makes people tick‟. “Yes it has grown out of my caringresponsibilities and seeing firsthand how mental illness manifests and progresses and how itcan be treated.”Other caring rolesJean has combined full-time work as a carer in hospital and residential care settings as wellas caring for her husband for nearly two decades. “Me is carer 24 hours a day.” Now seekingpart-time work she sees a caring role as a strong option as she recognises this is where herknowledge, skills and experience lie and isn‟t sure what else she could do.Amie has applied for some caring jobs but was rejected because she didn‟t have anyqualifications, which she sees as a big barrier.She would like to do caring work with older people or children with disabilities (though this isunrelated to her caring experience looking after her son with ASD). She is restricted becauseof a back injury but could offer things like companionship, taking them out, light domesticduties [This sort of offer sounds exactly what some people eligible for Direct Payments mightbe looking for.]“Birmingham Carers‟ Development Agency (BCDA) is looking at training opportunities.Because of the Direct Payments scheme, people are employing Personal Assistants, andBCDA are very keen that these people are as trained as they can be, and that‟s anopportunity for someone who has a caring role, e.g. a parent-carer whose child goes off toschool, could be a carer for someone else during that period, whether it would be careroverload I don‟t know!” LauraPathway pointers Paid caring work is obviously an area carers could be directed to if it were possible to consolidate their experience perhaps with some sort of qualification. Further, the whole area of personalised budgets and Direct Payments could be ideal if there was a systematic way of matching carers with some time to offer, to people (with or without informal carers) who were looking for some support. (See Direct Payments ).“Because I have a caring job I go to work to care, I come home, and start again, caring, so Iam caring 24 hours a day, 7 days a week, be it professionally or personally. This causeshuge problems because I don‟t seem to get quality time off, there‟s no significant breakbetween what I do for a living and what I do at home.” John, carer for both his wife and son.Lesley Pattenson and Steve Bedser 82
  • 83. Carers and Work – a report for Birmingham City CouncilPathway pointer It should not be assumed that informal carers would want to work as paid carers as well which may create too much pressure, so a careful assessment of personal preferences and needs must be provided.ProfessionalsHazel, a teacher/tutor moved from part-time employment outside the home to offering privatetuition at home. She did not seek any help, advice or information from any other agency ororganisation, and she didn‟t need any training or skills development to enable her to do this.She had no contact with Job Centre Plus, Benefits Agency or Carers‟ Centre. She simplylooked at her own skills and “I made up my own mind about what was feasible.”Anna was a doctor working on six month rotational training posts when her husband had avery severe stroke in his mid-30s. Two days later she had her first baby so fortuitously wasalready on maternity leave and so did not need to take time off work while supporting himthrough the early stages of his rehabilitation during which he needed considerable support.However, in due course she has been able to return to work full-time as well as havinganother child. This has in part been achieved by excellent organisation and planning, by herhusband‟s determination to be as independent as possible, but also by being able to pay fora child minder for her children while she is at work.Where the carer has a professional career with significant earning potential,including the ability, if necessary, to buy in additional care, it makes sound financialsense to do everything possible to stay in or get back to work. They may or may notneed additional help or support to do so, and the amount of support needed may beless than for people needing full retraining.Pathway pointer The chances of professionally qualified carers being able to return to work are probably reasonably good so it may be important to ensure that the small investment of time and support needed to help them to return to or stay in work will be worth prioritising in terms of reducing potential future demands on benefits and services.The ideal employer“I would like to point out that from the carer‟s point of view, the employer has to beunderstanding, flexible, sometimes you have to understand the carer may be isolated, notused to talking to people. I‟m slowing getting my social skills back. For a while I didn‟t haveany, now I‟m getting out there, having a conversation”. SharinaEllie‟s idea of an ideal employer would be someone very very understanding who wouldunderstand her having lots of days off, and understand that she would never be able toguarantee that she would be available to do something tomorrow, which she felt unrealistic.Pathway pointer The pathway could perhaps incorporate awareness raising with employers about carers‟ expectations and their expectations of carers while promoting the benefits employing carers could bring.Lesley Pattenson and Steve Bedser 83
  • 84. Carers and Work – a report for Birmingham City CouncilMarion appears to have the perfect job to suit her caring responsibilities: she has a late startso can get her mother organised and settled before she leaves for work, there are never anydemands to stay late to finish a piece of work, so she knows exactly when she‟ll finish. Thereisn‟t an official carers‟ leave policy, but it‟s relatively local, about 20 minutes in the car so it‟snot that far to get back if needed (and if there is an emergency, her brother works only tenminutes away). Unfortunately, she is due to be made redundant in the next few months.Openness about caring responsibilities and employer responseCarers face a genuine dilemma when seeking work, at the application and interviewstage, about how up front to be about their caring responsibilities and the potentialimpact they might have on their ability to undertake their work.Jane has always felt generally OK about interviews, but “There‟s always that thing in yourhead, against other people who haven‟t got kids with disabilities, it puts you off. You don‟tknow what response you‟ll get, do you say that you have caring responsibilities in interviews,or wait till you‟ve got the job? At what point do you tell the employer - is it better to be openwith them or wait till you need time off three weeks later, you don‟t want to be dishonest. It‟slike they‟re nice to your face then they stab you in the back. Other people have time off - it‟sdouble standards.” Jane“I was interviewed twice for a role and I said „I have to let you know I‟m a carer and I haveresponsibilities, and the interviewer said they could understand that because their mum wasa carer too, but I had to reflect that if I‟d been offered that job they‟re not going to let me workout of hours. That is going to mean massive changes and we‟re not in a position to cope andit would have been really difficult for me to do that, and I could have jeopardised my career ifI‟d been given that job in the end.” AlastairCatherine believes that she did not get a job once because of admitting to being a carer. “Itwas in a job interview (for a classroom assistant) – they were very interested but as soon asI said „I‟ve got two children with disabilities, so I wouldn‟t be able to work for a few daysduring term time when they have teacher training days and are off school, because Iwouldn‟t be able to get anyone to cover for me‟, then they just didn‟t want to know, that wasquite clear.”John was open about both his full carer status and his own diagnosis of autism during his jobinterview. The interviewer informed his manager without his consent, who passed theinformation on to her deputy. John has subsequently been bullied at work and believes he‟ssuffered direct disability discrimination on the grounds of his autism and indirectdiscrimination on the grounds of being a carer.Jane actually lost a job because of the impact of her caring responsibilities.Jane had been able to hold down a full-time job because of the support of her husband andthe employer being OK about her taking time off to take her son to hospital appointments.But when the organisation downsized and restructured, she lost her job. Some commentswere made about her caring role, which made her think that it impacted on their decision.She had explained that when her husband was on early shift she needed to be at home, butpromised to make up her hours on Saturday, their busiest trading day. “At first they said thatwas fine but later said „The thing that‟ll give you trouble is your hours‟ and ultimately theygave the job to someone else. I felt stabbed in the back.”Lesley Pattenson and Steve Bedser 84
  • 85. Carers and Work – a report for Birmingham City CouncilWhen it comes to the crunch, employers may make decisions about who isemployed or not, or who is made redundant or not, on factors which include theirperceptions of carers and their actual experience of whether or not an employee isreliable and dependable. Whether true or not in any individual case, employers‟perceptions may be that carers are more likely to take unexpected time off, havetheir work interrupted by calls from home or be pre-occupied by family matters.Pathway pointers The issue of disclosure at interview could usefully be rehearsed with people providing advice and support along the pathway. They could provide an opportunity to talk through how best to present the carer‟s role to potential employers, without misrepresenting the truth, but also finding ways of offsetting it by proposing manageable solutions e.g. flexibility in making up hours, taking work home. This issue can also be highlighted and explored with employers. If they have a positive attitude to carers is there a way of showing it up front? (There is a strong parallel here with issues for gay people who may be wary of coming out at work, because they fear a negative reaction, and the ways that an organisation can subtly or overtly display that it has a positive attitude towards carers/ gay people). Perhaps a carers‟ version of the Stonewall Diversity Index and Top 100 employers could be developed.Local to homePotential working time available is further restricted by the amount of time required totravel to and from work. A local base both maximises working time and reducesanxiety in terms of getting home in the event of a crisis.Anna, a doctor, is currently on rotation near to her home but her next rotation could beanywhere in the West Midlands which would cause difficulties. “I can get the kids ready andall have breakfast together, then I go to work and the childminder comes. But if I had toleave earlier then it would be difficult to get them out of bed earlier and the same thing at theend of the day, my husband would have to do more and it‟s not ideal for him or the children.”Part-time postCarers may have a very limited number of hours available for paid work, restricted bycaring responsibilities and in some cases, the impact on benefits.“I was even prepared to work on a Tesco checkout, just for a different environment, I wouldhave loved to go out for 2 – 3 hours to work part-time. But I also thought, would they employsomeone who just wanted to do a few hours?” MaxineHowever part-time work may enable carers to continue working.Marion gets her mother ready in the morning and sometimes has time to take her for a walkor to the shops before leaving home at about 11.30 a.m. She is home by 5.30/6.00 p.m. Herbrother, who works nearby, pops in during this time to check on her and give her a drink andcan be there in 10 minutes in the event of an emergency. “She wants me here 24/7, and Ican‟t do it. Mentally I can‟t do it.”Lesley Pattenson and Steve Bedser 85
  • 86. Carers and Work – a report for Birmingham City CouncilHours and start and finish timesCarers‟ availability for work is defined by the hours that they are not engaged incaring, so for carers of adults, if the cared for person was in day care facilities thenthe availability was determined by the days and hours that the facility was providingthe care. For children of school age this meant a restriction to school term timesbetween around 9.30a.m. and 2.30 allow time to send or take the child toschool and be home in time for their return. This steers carers towards part-timeposts with late starts and early finishes, although even then there may bedisruptions.Christine worked as a hospital domestic between 10 a.m. and 2.00 p.m. while her two sonswere at school; that lasted 18 months but there were a lot of problems with the boys atschool and she also had health issues. “The supervisors were understanding to begin with,but because you‟re missing too much time to sort out your problems, your life, it wasinterfering with work too much”.Term-time working in school hoursShazia would like to work in school; what appeals is “I can still take them to school in themorning, collect them in the evenings and still be with them throughout the school holidays.”For all carers with children at school the biggest barrier to employment was fitting inwork around school hours and school holidays. While this is by no means unique tocarers, parents of children with special needs have fewer alternatives than parents ofother children. Most of the parent-carers of children still at school expressed theiravailability and interest in work in these terms, and a number of parent-carers hadworked or sought work as classroom assistants or other school based support staff.Margaret worked for many years as a classroom assistant in special school. “I was able to fitthat in because during the periods that I‟ve done that my daughter was going to school earlyenough for me to be able to get to my employment, which was very local to where I lived,and I didn‟t start until 9.30 a.m. and I finished in time to get home for her coming home so itworked quite well.”Pathway pointers Employers could be encouraged to introduce more school term only contracts. This would dovetail well with holiday-only contracts which could be offered to students. Possible liaison via head-teachers networks and school governors to promote and support the opportunities for parent-carers to gain work-based experience and apply for school-based posts.Shift workingWhen Jean was on early shift she would be back by 3.30 to 4pm, her husband couldmanage on his own till she was home. Good organisation in terms of getting him set up forthe day meant that she was able to continue working full-time.Lesley Pattenson and Steve Bedser 86
  • 87. Carers and Work – a report for Birmingham City CouncilBy combining complementary shift patterns, Jane and her husband were able to hold downfull-time jobs. Jane started her job in retail administration at 7 a.m. while her husband got herson ready and off to school. She could then finish early to be at home when he returned.When she first came to Birmingham Amie lived with her cousin and did shift work at a fastfood outlet. She was in control of choosing or agreeing the shifts on the rota so tended towork mornings weekdays and nights on Saturdays to fit in with her son, then aged 6. Thishad to stop when she had to move into a place of her own but restarted when her older sonjoined her in the UK.Shift work with a degree of choice offers a good option for some carers. Howeverthis type of work is often low paid with little security.„Zero hours‟ contractsChristine started working with a company which offered a „zero hours contract‟. “I wouldphone in the week before and tell them what hours I could do and they would tell me whathours they wanted me, but they could turn that switch and turn me off whenever theywanted. Zero Hours was good until they turned it off altogether.”This type of contract offers employers a lot of benefits because they are notcommitted to paying someone when they have no work for them, and presumablyare absolved from any employer liabilities such as sickness pay etc. It also givescarers total control over their work availability but at the risk of unpredictability of orloss of income should they get little or no work in any period.Pathway pointer Subject to it being compatible with relevant employment legislation, „Zero hours contracts‟ is an option which could be presented to or promoted to certain types of employers.Trial or probationary periods or short term contracts“Maybe something worth exploring is the opportunity to have trial periods in the work role sopeople can test it out if the employer is willing to do that. If it doesn‟t work out there is all theissue of getting back onto benefits easily. I was offered some work which would have beenquite flexible but when it came to it I would have been worse off than on the benefit, andthere was no guarantee that the work would be sustained so it was too much of a risk and Iwas thrown back into being unemployed.” LauraPathway pointers Work could be done with employers to find more flexible ways of contracting including trial periods. Unless either a very small part-time job under the level at which benefits are affected, or a well paid full-time job, it is not going to make economic sense to start paid work. Also, it is common experience that it is a big hassle to try to get back onto benefits once off them with lengthy delays. The DWP could be lobbied to review the application of the benefits system so that it is easier to take a break from benefits, but which can be easily reintroduced if things go wrong or when a short term contract ends, so that people are not deterred from taking up such opportunities.Lesley Pattenson and Steve Bedser 87
  • 88. Carers and Work – a report for Birmingham City CouncilFlexibility to take time off for crisis events or planned appointments“I have been very fortunate in being able to manoeuvre my diary and my working obligationsaround a whole week or weeks in advance, and storing up hours in advance, the whole timeoff in lieu situation that we used to have was very useful; I could do a night session from10pm – 1.00 am, when I‟ve made sure Simon‟s asleep before I leave the house, then takeoff the morning to go to hospital with him for an appointment, so it wasn‟t like I‟d get time off,I never have time off, I‟m always at appointments or at work.” AlastairGenerally however, carers expressed concerns that if there was a crisis to do witheither the cared for or the carer, an employer would not be understanding enough tocope with potentially repeated absences from work. Similarly, they were concernedthat they would need time off to take the cared for person to doctor‟s, hospital orschool appointments and they felt there would be a limit to how patient andunderstanding employers (and colleagues) would be.“There‟s no way I could have held down a mainstream job [while caring for her elderlyfather], I couldn‟t ring and say „I can‟t come in today I‟ve got to take my dad to the clinic, orthe next day, to the hospital, and the next day to the GP‟. No mainstream employer wouldput up with that, so there‟s no surprise carers give up their jobs, they‟re dealing with theresentment of their colleagues, and even if they did hold down a job they‟ve still got to dealwith doctors, care workers.” ValerieThis was a disincentive or at least a concern about seeking employment. This wasexacerbated by a reported lack of understanding or awareness on the part of theperson or organisation making the appointment, about the significance of timing to fitin with work or caring responsibilities. As previously noted a lot of carers also hadtheir own health issues requiring medical appointments and these too were often notarranged considerately in terms of their caring responsibilities.“I‟ve been given hospital appointments at times where it clashes with my son coming homefrom college; I need to be here when he comes home.” MaryPathway pointers Educate or negotiate with employers to consider flexible working arrangements which allow people occasional time for planned or unplanned time away to do with caring responsibilities, where perhaps work can be made up at another time or occasion, through occasional working from home, or flexibility in starting and finishing times. A general message to other partner agencies is the need for greater awareness and flexibility in terms of the ability to negotiate suitably timed appointments which would be appreciated by carers, parents, workers or disabled people.An understanding manager and supportive colleaguesIt will be hard for potential employees to gauge the attitude of their manager beforetaking up employment, but those carers in work testify to the attitude of the managerbeing pivotal. Several carers had had quite negative experiences with managerswhich they attributed to their carer status.Lesley Pattenson and Steve Bedser 88
  • 89. Carers and Work – a report for Birmingham City CouncilMarion said that her previous manager didn‟t like her, she was under stress with her caringrole at home and she took time off sick. This resulted in her manager at the time beingawkward with her because of the time she was having off. Since her manager left she feelsbetter at work again and although her caring role hasn‟t changed “I‟m coping better now withthe stress of the caring role.”John, a learning disabilities nurse, recently started a full-time post in a care home for peoplewith learning difficulties. However, he soon started experiencing problems because themanager expected all staff to be available to come into work 24/7 if needed e.g. to cover forsickness or to come in for a staff meeting, even on days not supposed to be working. Hisshift pattern includes lates, earlies, sleeping nights and the occasional long day. “The shiftpatterns are c**p, over Christmas and New Year I did a ten day shift without a day off. Inoticed from the rota that I was the only one doing this stint, I was supposed to have doneanother ten day stint last month and again I was the only person down to do this”. Themanager is well aware of his caring responsibilities as well as his own high functioningautism. John feels sure that this knowledge had influenced the shift patterns he‟s beengiven. As a direct result of the stress at work, from the shifts and the worry of being at workand not being at home, John has gone off sick with depression and is thinking of leaving thispost. “The situation I‟m in is that it has almost got to the stage where I cannot both workoutside the home, and fulfil my caring responsibilities. This particular job is reallyincompatible, so my option is to give it up altogether.”“I told my manager, „Simon‟s fallen, I‟ve got to go‟, I didn‟t even give him the option of sayingfine, I was going, the ambulance was there, blood everywhere, there was no other option.Then, I got a phone call from him the next day, „How are you going to make your hours up?‟,and I could have done without that. On the one hand it‟s very supportive but on the other,he‟s got to look at it from a management perspective and I respect that, but it‟s sometimes abit difficult to hear. Once I do communicate with him, he understands the situation, thatwasn‟t my priority unfortunately, and it has been said that work has to be my priority,because if I don‟t have work, I don‟t have a roof over my head, certainly not one that I couldpay for, and that‟s the concern that I‟ve got.” AlastairPathway pointer If posts are taken up without ensuring that the working pattern is compatible with caring and that there will be a sympathetic attitude from the manager, carers may end up leaving, disrupting their finances and possibly reducing their future employability. Therefore it is important to get these things in place from the outset or as soon as possible for workers newly into the caring role.Christine lost her full-time job as a result of frequently being called to take her son homefrom nursery because of problems. “The management tolerated it for a few months, thenafter a few talking-tos it went on the record, it was also becoming unbearable because of theattitudes of my colleagues, I would get a lot of dirty looks.” She left to work mornings only fora different company.”That only lasted a month because they didn‟t keep me on because ofthe problems that kept happening over the trial period; that happened twice.”Pathway pointer The attitudes of colleagues can also contribute to the viability of the continued employment; managers will need to promote an appropriate culture in the workplace.Lesley Pattenson and Steve Bedser 89
  • 90. Carers and Work – a report for Birmingham City CouncilGood organisational and employment policiesEven a supportive manager may be stymied by restrictive practices of the employersuch as not having carer or crisis leave policies.Marion has looked through the policies and there is nothing about carers‟ leave or crisisleave policies at work, so if she needs to take her mother for an appointment during worktime, company policy is that she has to take time off as annual leave, (whereas if it‟s time offfor a medical reason for herself e.g. quarterly diabetes clinic check-ups, they honour thoseand she can go in work time). It is inconvenient for the organisation because they have toget agency staff in to cover and they are not always available. Her manager is followingpolicy, it‟s difficult for the manager, but she‟s great.” She‟s already taken 6 days annual leave2 months into the leave year. If she used up her 30 day allowance before the end of the yearshe would have to take it without pay. This also limits the time she can take as actual holidayleave for herself.“I don‟t want to go back into retail because of the hours, especially with bigger companies,and the hours that they open, and when you are part-time they expect you to be moreflexible. I can be flexible where I can be, but it‟s not always possible, so that‟s one of myniggly things really, because sometimes they don‟t really understand.” JanePublic sector organisations are more likely to have good carers‟ and crisis leavepolicies, and also to be large enough to accommodate occasional absences from astaff member (obviously depending on their role).Anna felt under pressure to return to work before she felt ready to, but felt constrained by thesystem of medical rotations, and also had not shared the situation about her husband, whohad had a stroke at the start of her maternity leave. “I didn‟t talk much about it at work, and Ithink it was because I had struggled with it. Some colleagues did know but I didn‟t reallymake it an official thing. But when my husband had to go back to hospital to have acranioplasty done, I didn‟t even know about carers‟ leave but one of my colleagues told meabout it. That was the first time I explained what had been happening, really, before that Ididn‟t really talk about it. They were fine with it and gave me the carer‟s leave and one of mycolleagues was willing to cover me for patient emergencies.”“I‟m in a very fortunate position to be in a public sector organisation that understands theneed to be helpful, and there are policies and procedures to support me and to protect theorganisation, because I‟ve had to have emergency leave, I‟ve had to have carer‟s leave, andI can leave work at the drop of a hat so long as I can reorganise my diary when anemergency happens. I‟ve been very fortunate that an emergency has never happened whenI‟ve had to be somewhere else and that impacted on something else important that I wasdoing, but there is a foreseeable situation in the future here if nothing changes that thatwould happen My colleagues have been very supportive too, that makes me feel like it‟s areal team. It could be a living nightmare if I had a different organisation, differentresponsibility, different role, I couldn‟t have coped.” Alastair“Knowing there was some flexibility, like if my son‟s taxi was late, I could catch up later, thatwas an important factor in feeling able to commit to the job, the managers were very awareof my caring role when they employed me. I would be able to work from home if he was sickand not able to go to school. My line manager is very supportive. I know a lot of peoplewould give their eye teeth to have that situation, in organisations it‟s not always possible todo. I think being a carer organisation, they do appreciate problems that carers experience.As time goes on I think employers will become more carer focused but it is difficult.“ LauraLesley Pattenson and Steve Bedser 90
  • 91. Carers and Work – a report for Birmingham City CouncilIt would be hoped that public service organisations might also have a moreunderstanding and positive attitude. This cannot always be assumed, however.Margaret worked 2 days a week for a carers‟ service based at the Council but the terms ofemployment were quite rigid with an inflexible 9.00 a.m. start. She could not haveundertaken it without personalised support for her daughter timed to suit the requirements ofthe job, through Direct Payments. “I was able to pay with my Direct Payments, somebody tocome here at 8.00 a.m. and get my daughter up, to do the things that she needed to do forthe day, and then also, my daughter stayed with that person overnight and then didsomething the next day so that I could actually get up the next day and get to work.”Pathway pointer An accessible database of employers who have been identified as having positive policies and practices for carers would be a helpful tool.Staff support“Through work there has been counselling and emotional support that I‟ve had access to,and also professional development that‟s given me stability. I had to have meetings withhuman resources when things were not going right, for them to understand my situation, sothey understood from a legal policy perspective what my manager was doing with me incase other people feel there are unfair advantages e.g. allowing me to work late nights, notcoming in in the morning. Because I didn‟t sleep at night I found it impossible to get into workat 8.30 – 9.00 o‟clock, so I‟d get in at 10/10.30 and work through till 6/6.30pm and maybehave to go home half way through the day just to do a double check that he‟s OK.”Pathway pointer Organisations with good employee support infrastructure which can be accessed by carers would be a positive point on any checklist of carer-friendliness.Home working optionsMahmood reduced his job-seeking efforts when his mother had the stroke although he wouldstill be very interested in a job he could do from home. This would need to be either a fewhours which would not net him over the £94.95 allowed before his benefits are affected, or afull-time one which would bring in enough to offset full benefit loss.Realistically many jobs do not need to be done in an office base, or at least part ofthe time work can be undertaken at home.“The best job for me is being an NVQ assessor which means that to a certain extent I canwork from home and be at home in the morning to support my family and generally eveningsand weekends. Working for colleges also means I was able to a certain extent work fromhome, so I was able to meet the needs of my family more appropriately without having toworry.” JohnWhen Lisa‟s husband was initially diagnosed with MS, although retiring prematurely fromwork, he could manage at home and she continued her work for a legal firm. Then the firmset up a new team which offered the opportunity to work from home, so she started doing 2days at home and 3 in the office. But her husband‟s illness progressed far more rapidly thanexpected, he was falling more often and she was more often getting calls and had to rushLesley Pattenson and Steve Bedser 91
  • 92. Carers and Work – a report for Birmingham City Councilhome to help, so she moved to working full-time at home. She fits full-time hours into 4 daysa week, including late evening cover one day. This gives her more time with her husbandand is able to pop in on him to check whether he needs anything while she is workingupstairs. The cost of utilities is less than the costs of travel saved, and the only disadvantageis that she misses the social contact. “I‟m less stressed, I don‟t have to worry all the time,and don‟t have to take emergency holiday leave because I‟m there when he needs me.”Pathway pointers It may be possible to adapt work to be able to work from home. The pathway should ensure that it provides support to look at whether this is a possibility. Advocacy directly with employers might help negotiate such arrangements. Opportunities for delivering part or all of work from home could be encouraged and employers where this is a possibility could be flagged up on a database of carer-friendly employers.An example of employer good practice – home workingA major legal firm with offices in several cities has established a document production teamof 20 technicians all over the country, many working from home. All equipment (computer,printer) is provided for the original set up and supplies of paper or cartridges arrive bycourier. The employee‟s phone is connected to the firm via internet, and anyone calling canring the extension number and get straight through, having no idea that they are workingfrom home. Scanned or typed documents and audio files are sent and returned by email.The advantage for the firm is they have no overheads and can take less expensive officespace. Service is not disrupted by the effects of bad weather or traffic problems. A number oflarge legal and accountancy firms apparently have a similar system, as well as hot-desking,where lawyers can work from home but share desks when they need to come into the office.Lesley Pattenson and Steve Bedser 92
  • 93. Carers and Work – a report for Birmingham City CouncilALTERNATIVES TO DIRECT EMPLOYMENTAgency and locum work“Agency nursing was also better because in theory I could pick and choose what hours andshifts I worked, because it pays reasonably well.” JohnThe appeal of agency work is that it is possible to choose not to work thereforeallowing flexibility to undertake planned or crisis caring responsibilities. Thedownside is that work will not always be available, or that carers are selected lessoften when opportunities do come in because carers are deemed less reliable.Catherine joined an agency to be a classroom assistant and support worker for children withlearning disabilities. Regular work stopped because she had an accident. Subsequently shejoined another agency and gets occasional work, though she hasn‟t had anything for 6 – 7weeks. This work is still limited to school hours and term times so suits her caring role. Thisis still relevant even though her youngest is now away at college during the week, there arestill holidays to consider. The agency knows that Catherine has caring responsibilities. Theyrecently offered her two days work and were very clear that the commitment had to be fortwo days, or she couldn‟t take the work, but one clashed with a pre-arranged hospitalappointment for her son. As a result she had to rearrange the hospital appointment. She hasoccasionally had to work a day at half term; she had to make sure there was someonestaying at home to look after her son. If that was required in the longer term, for exampleduring main holidays, this would lead to problems.”The good thing is as medics, you can do locum work, so I started to work sometimesweekends, sometimes three days a week, and I did that for a few months, then got a 9-5post. At that time we had a child-minder to look after the baby who was walking then, as myhusband obviously couldn‟t carry her.” Anna, a doctorPathway pointer Support in the processes and procedures in registering with appropriate agencies should be provided as an option whether as an interim or longer term approach.Self-employment as sole traderFor many carers it simply may be too complicated to return to conventionalemployment, but this should not rule out the possibility of them undertaking someviable economically rewarding activity.“Ideally I‟d be looking at some flexibility – I‟ve wondered whether to look at the route ofworking from home, perhaps on-line counselling or as a therapist and see clients at home.”MarySeeing clients at home with appointments arranged individually around caring needsprovides a promising approach to both income generation and maintaining caringresponsibilities, although it is still open to disruption by crisis.“I would like to go back to college; I wouldn‟t want to go back to work without an update inmy skills. I‟m very hands on, I like talking to people, I‟m thinking about reflexology. I wasLesley Pattenson and Steve Bedser 93
  • 94. Carers and Work – a report for Birmingham City Councilhoping through the college to get some contacts and maybe work alongside the localhospital or maybe do home visits. I‟d be in control of appointments so it gives the flexibility tomange alongside caring.” Christine“The work I do is for myself, it‟s more advisory, I work on a Tarot line, that‟s my secondcareer I‟ve done most of my life, and I wanted to do something for myself, and have theflexibility to look after my father. I have clients here face to face, which gives me a lot offlexibility, I work evenings and can see my dad in the day, I work seven days a week to makeup the money. Sometimes there are times when you have to cancel appointments becausethere‟s something going on with dad. I‟m walking a tightrope basically.” ValerieHazel had been working part-time outside the home providing teaching sick children whowere missing school. She gave this up ten years ago when it became apparent that hercaring responsibilities for her husband, who had a serious degenerative illness, were goingto progressively increase as he deteriorated. However, she saw that there was potential touse her existing skills, knowledge and contacts to offer private tuition to children from herhome, with sessions lasting a maximum of an hour. She was on hand to help her husband ifthere was an emergency but he could generally wait until she had finished the hour. Sheworked up to 6 hours a week doing this. She used existing networks and word of mouth toattract clients. It was a relatively smooth transition from working outside the home toorganising it within. She later supplemented this with additional casual teaching workproviding short sessions outside the home during the daytime. It didn‟t take long to get there,she had her mobile on and she could get back easily if there was a problem at home, whichwere all factors in her deciding this was a feasible course of action. Her husband died twoyears ago but she has continued with a similar pattern of working, although she is now longpast the conventional retirement age.Pathway pointers It is essential that the pathway does not restrict its focus or aspirations to employment and that the option of self-employment is also considered. The pathway should ensure that it provides access to appropriate support, advice and guidance in order to help the carer assess whether self-employment is a realistic possibility or alternative option to employment.Setting up a small businessSome carers would consider running their own business from home because of theflexibility it would afford, but recognised that they would support to achieve this too."Because I‟ve been out of work so long and there‟s thousands of people wanting to work,and my age is an issue as well, I thought it might be easier to start a business.” Although shehas several ideas Maxine is not sure doing exactly what. She contacted Opening Doors whoput her in touch with a new service run from the Central Library, supporting carers in toestablish their own business which she thought was specifically to do with carers and caring.Asked about running her own business hence being her own (understanding boss) Ellie said“Perhaps but you still have to have the skills to be your own boss and run a business.”Pathway pointer The pathway needs to be able to refer carers to courses or one-to-one support on setting up a business, having first established that the providers have a good understanding of issues and circumstances of carers.Lesley Pattenson and Steve Bedser 94
  • 95. Carers and Work – a report for Birmingham City CouncilHome-based contracts for servicesSome types of paid work can only be, or are best delivered from a home or familyenvironment, including fostering, crisis care, or small scale child-minding. Thispresents a creative opportunity for carers who need to be at home a lot to providecare for their own family member, to supplement their income. Obviously they alsoneed to pass the requisite assessments and criteria, and ensure that the cared forperson and the rest of the family are comfortable with the arrangements and theability to care for the cared for family member are not compromised.Christine took a child-minding course at a local college, had the health and safetyassessments done, and started child-minding in her own home. “That was very good, andworked OK for a couple of years until it came out that my sons didn‟t like me doing it, whichwas causing them stress and they were having tantrums so I stopped that.” So then sheregistered with the Council‟s Family in Crisis scheme, looking after teenagers whose familieswere having problems, like short-term part-time fostering. “I loved it. It was fine [with hersons] to begin with, then they started having problems socialising, and on a couple ofoccasions children who had stayed stole some of their belongings, so that came to an endtoo.”Pathway pointer Opportunities for this sort of service-based contract, often delivered from home, should also be flagged up and considered as carers have a distinct advantage in terms of experience in this arena.Informal economies and creative opportunitiesIn the current economic climate, income generation through any of the former routesmay still be unlikely. Instead carers could be encouraged to think of ways of utilisingtheir time, skills or experience in a money-free economy whether informally betweenfriends or neighbours, or formally through a skills exchange or time bank system,where they swap with other people or build up credits so that instead of payments forthese short, one off services, in return they can receive another service which willsave them money. This has the bonus that it addresses some of the other commonmotivators including doing something different, getting out of the house, meetingothers, and developing self-esteem.“There‟s no incentive for me to work, though I do one-offs in return for gifts.” Vivienne, anartist and ex-carer who is disabled and in receipt of benefits.While there is no obvious link with floristry and caring, three carers (Maxine, Jean,Vera) independently mentioned that they were interested in learning flowerarranging, perhaps with a view to using it to earn money. Others mentioned othercreative skills such as cake decorating, which could be done from home or personalservices, such as reflexology. Many carers undoubtedly have a range of skills orbasic abilities already which could be developed or brushed up, or learnt fromscratch. Instead of focussing on employment there might be scope in considering thepotential of pooling resources, sharing complementary skills or exchanging services,whether or not for actual money. Such ventures might require some leadership,guidance and support in setting up, or pointers to existing opportunities.Lesley Pattenson and Steve Bedser 95
  • 96. Carers and Work – a report for Birmingham City CouncilPathway pointers If there are a number of carers who happen to have similar (or complementary) ideas, interests and aspirations, maybe a bulletin board, notice board, computer generated alert or other form of networking opportunity could be established through Opening Doors or the Carer Centre, so that like-minded carers could be put in touch and consider partnership approaches to setting up enterprises. Carers could be encouraged to develop or hone up skills such as hair-dressing, flower arranging, cake-decorating, dress-making, typing, gardening, ironing etc. which they could use in informal money-free economies such as skills exchanges or time banks. This might even include some support for the cared person, if appropriate (e.g. sitting in with an elderly parent, playing with a child with special needs etc.) Many such things could be fitted into times when the carer is not needed at home, or could be done from home.Social enterprisesGroups of carers could potentially pool resources and those of the people they carefor to develop and deliver a service which provides a combination of service,employment, stimulation, experience and meaningful occupation for either/or carersand cared for people.Margaret and her daughter have successfully set up a cafe which operates two days a weekand offers a meaningful day experiencing catering and creative arts. They have done this bypooling her daughter‟s Direct Payments with those of five others, who are in turn paid asmall daily wage for delivering the catering, while other users pay for the arts and craft sideof the service. “Finding the other people with Direct Payments was the hard bit. There arelots of people that are out there that have got nothing to do, we could have filled it a hundredtimes without people bringing in any money, so to actually find people with Direct Payments,that has taken probably 3 years. Direct Payments is relatively new but I‟m always very sadthat we still haven‟t got a system that I could go onto a website for Birmingham and put inwhat my daughter would love to do with other people, and try and connect with others thathave got Direct Payments to make it happen, so it began by word of mouth”.Margaret‟s role, for which she is not paid, is setting it up and pulling the whole thing together,which takes up about a day and a half a week. Although part of the Direct Payment is goinginto the cafe there is still plenty left to continue other things, like someone to take herdaughter out shopping on a Saturday. “There could be a network, that is what wedesperately need. That could create employment for parents and others. It could even bebeneficial to the support staff we have, they could learn how to do things better. Just asrecipients of Direct Payments [are isolated], the people who are individually employed, areisolated from each other as well.Pathway pointers There is considerable scope for creative shared solutions beneficial not only to carers seeking meaningful occupation, with or without income, and the people they care for, through enterprises such as this. A website, network or bulletin board, or facilitated occasional group meetings would enable people to get together and pool ideas as well as resources. If supported and facilitated by relevant agencies it would provide another option for others joining the pathway.Lesley Pattenson and Steve Bedser 96
  • 97. Carers and Work – a report for Birmingham City CouncilINFORMATION GATHERED FROM EMPLOYERS ANDEMPLOYMENT SUPPORT AGENCIESSupport for carers seeking employmentJob Centre Plus (JCP)Our initial discussions with JCP revealed a significant policy change that took effectin December 2009. From that date, carers have been identified as a priority group(alongside people in receipt of JSA, lone parents and partners of claimants) in thedelivery of JCP services, either directly or through JCP delivery partners.Significantly, JCP delivery partners have been given 5 year contracts for theprovision of employment support services. Whilst there is no information as yet aboutany potential changes in spending from national government (and it would bereasonable to assume that there might be at least some changes), this is asignificant policy commitment that is highly likely to be retained in principle andcertainly shapes the environment in which services for carers seeking employmentare currently operating.A cornerstone of the current approach from JCP is the identification of Carers‟Champions, who are based in each of the 12 JCP offices in Birmingham. All thesechampions have had at least a half day training session focussing on the needs ofcarers, which in turn compliments the training given to clusters of advisors in eachJCP office. Consequently, JCP are able to guarantee a carer seeking work aninterview with a specially trained advisor within 3 weeks of making contact. Thisservice is not contingent on the individual being in receipt of any particular benefit,nor is there an obligation to make an ultimate transition into employment. Thesupport offered is voluntary and without caveats.23IngeusIngeus are a private sector employment skills provider that is currently operating acontract from the DWP24. All referrals to Ingeus need to be made through JCP, butthey are happy to liaise directly with third parties to facilitate appropriate referrals.Ingeus operate a course for job seekers called „Launch Pad‟. Launch Pad is a coursedesigned to give participants „the skills to find and apply for suitable jobs, and recentwork experience to impress employers and give them the confidence to return towork.‟ The course is delivered over 8 weeks (4-week training course and 4-weekwork placement), initially in premises located in the city centre, within a few minutes‟walk of the Carers‟ Centre. The course operates 3 mornings per week for 3 weeks,typically 10.00 – 13.00. The course organisers indicated that they would be happy tobe flexible about the precise timings of the sessions to accommodate any crucialcaring responsibilities (e.g. the need to wait for transport to a day centre). The fourthweek provides for the delivery of one or more „next steps‟ sessions and then the23 Other than that of being unemployed or working fewer than 16 hours.24 The new government is devising a new „Work Programme‟ – there may be different packages, providers andcontracts for support into employment in the future.Lesley Pattenson and Steve Bedser 97
  • 98. Carers and Work – a report for Birmingham City Councilfollowing four weeks provide the opportunity for the option of a work placement (ofup to 15 hours per week), organised by Ingeus and specifically tailored to the needsof the individual client.During the course of our meetings with Ingeus, assurances were given (prompted byfeedback from interviews with carers) that carers who opted to participate in thisprogramme could be guaranteed that they would only be working alongside other,similarly motivated job seekers, and, if necessary, in groups run exclusively forcarers. Similar assurances were given about the capacity of Ingeus to provide thiscourse (and work experience) to clients with a wide range of skills, experience andqualifications, pitching the content at an appropriate level. Specifically, (and againprompted by carers‟ feedback) the ability to secure relevant work experience forpeople with a professional background who were seeking to return to their chosenvocation. As an observation, the ability of an organisation like Ingeus to deliver sucha bespoke service rests entirely on the skills of the team delivering the service. Therepresentatives interviewed in the process of this research were certainly impressive.Our approach throughout has been to „bend‟ the boundaries of a purely researchbased commission. The discovery of an organisation like Ingeus, so close at hand tothe Carers‟ Centre prompted an immediate response to link up Ingeus with theOpening Doors for Carers project. Ingeus made a pledge to run a Launch Padcourse specifically for carers and this has since taken place. Furthermore, theyagreed to work alongside staff from Opening Door for Carers to review and furtherdevelop the content of the Launch Pad programme so that it becomes even morealigned to the needs of carers, with the potential for co-facilitation of the course,which would have the merits of ensuring a continual focus on carers at the sametime as providing valuable experience for the Opening Doors for Carers team.Care through the Millennium - Case Study of Best PracticeCare through the Millennium is a private sector organisation that specialises in care forpeople with learning disabilities. The majority of its residents are referred to the service by,and funded by, local authorities. In South Birmingham it has recently opened a purpose-builtsheltered residential community, which is being populated in phases over a twelve monthperiod. As a consequence, care through the Millennium have recruited over 50 care staff in asix month period, with the prospect of needing to recruit over 50 more in coming months.The company have a recruitment philosophy founded on the notion that „successful caringcareers are as a consequence of carefully matching prospective employees to theorganisation. It‟s about their aptitude, not their immediate past CV‟.In close liaison with JCP, candidates are selected for a two-week mandatory pre-employment training session which is delivered by Bournville College. Following thattraining, candidates are invited to participate in a two-week work trial. This introductionresults in an 85% retention rate, and after six months, 100% of people offered permanentroles are still with the organisation. This recruitment process will be repeated to bring thestaff team up to a full complement of c.100 staff and repeated as necessary to maintainstaffing levels.Providing potential employees are able to commit to (a very clear) shift pattern, the employeris far more concerned about aptitude, than formal qualification or experience. Anecdotally,they are aware of a number of current and former carers on the payroll, and are clear that acaring background is a significant indicator of potential aptitude.Lesley Pattenson and Steve Bedser 98
  • 99. Carers and Work – a report for Birmingham City CouncilWorking Neighbourhoods FundWorking Neighbourhoods Fund is an important stream of funding, targeted attackling worklessness in Birmingham. The following text is a précis of contextualinformation available on the Be Birmingham website: Government believes that there have been many successes in tackling deprivation nationally and locally characterised by substantial progress in tackling crime, educational underachievement and health inequalities at a local level. However concentrations of deprivation, in particular worklessness, persist in some neighbourhoods. Working Neighbourhoods Fund (WNF) is part of the Government‟s drive to tackle worklessness and low levels of skills and enterprise with a clear emphasis on areas of high deprivation. WNF forms a distinct element of the Area Based Grant; a non-ring fenced general grant providing resources to local authorities. Be Birmingham (the local strategic partnership) took the lead In developing the WNF programme, having regard to the guidance issued by DWP and CLG which stated that WNF would “…focus on the most deprived areas and which will support local authorities and communities in their efforts to tackle worklessness and the other elements of deprivation”. The DWP/CLG Guidance states that tackling worklessness needs to be a multi- agency approach in order to create and sustain enterprise to drive demand for labour in and around neighbourhoods with high worklessness and address barriers that prevent people in these areas accessing jobs. Key to delivery are the targets and implementation plans that local areas agree in consultation with partners in the private, voluntary and community sectors. The context for the use of the Fund is the Sustainable Community Strategy which sets out the overarching long-term vision for Birmingham 2026, with the Local Area Agreement (LAA) setting out 19 key local priorities for 2008/11 aimed towards delivering the first steps of the SCS. Birmingham is highly committed to tackling worklessness and improving quality of life outcomes for all citizens particularly those living in the most deprived areas. In line with the Government‟s expectation, the LAA targets include NI 153, the specific National Indicator for Worklessness relating to working population claiming out of work benefits in the worst performing neighbourhoods (i.e. 187 Super Output Areas (SOA) (census unit of approximately 1500 people) with 25% and above rate). The target is to reduce this rate by three percentage points from 30.8% to 30.3% by March 2011. Implicitly, this will capture a significant number of carers, who will benefit from local, targeted additional support in their search for sustainable employment.Consequently, carers who live in the identified areas of deprivation (and intuitively,there is likely to be a positive correlation between deprivation and incidence ofcaring) will find themselves able to access numerous WNF funded schemes, someof which are identified below. Each of these providers has a strong track-record inproviding tailored and personalised approaches to their clients. They are highlyincentivised, and are rewarded by job outcomes. In our meetings with theseproviders, we identified a strong willingness to work with carers and to tailorinterventions that closely matched carers‟ needs. They demonstrated an awarenessLesley Pattenson and Steve Bedser 99
  • 100. Carers and Work – a report for Birmingham City Councilof the constraints that might affect a carer‟s ability to engage in work preparationtraining and a willingness to provide appropriate and innovative interventions.At this stage it is worth noting the postcode constraints on WNF service provision.We think that there is scope for a debate about extending the remit of the WNFcontracts to make potential clients in non-super output areas eligible for WNFsupport. Specifically, being a carer and not being economically active, is areasonable proxy for the level of deprivation that WNF is designed to address. Webelieve that there should be some discussion about including all carers, irrespectiveof postcode, when prioritising resources to tackle worklessness. This will be an evenmore important principle to establish if resources get scarcer in future years.We are also aware of differential development of WNF projects at constituency level.Whilst we acknowledge the virtues of local decision-making, this has had the effectof creating a patchwork service for carers in Birmingham. There are currentlyservices specifically for carers in Hall Green, Yardley and Erdington constituencies,but we are unaware of any distribution of need that might substantiate the differentialservice provision at a constituency level. It possibly even compounds an inequitableapproach, reflecting a more developed third sector in those areas, with the capacityto make funding applications.Disability Employment Solutions (Birmingham City Council)Disability Employment Solutions is an existing service provided by Birmingham CityCouncil that supports people with disabilities in(to) employment. The service has anextensive network of Employment Development Officers and Employment SupportOfficers that work with individuals through projects and partnership arrangements.Some of the activity is focussed on areas of deprivation in the city, but the serviceexists to support all who might benefit from their support. Services can be accessedby self-referral.As a starting point, it is credible to suggest that disability organisations might havegreater understanding of, and empathy with, carers. Therefore, there is potential tolook at the existing model to see if it can be expanded to accommodate the needs ofcarers. The analysis of carers needs could provide pointers for the futuredevelopment of this service to meet the employment needs of carers, as well aspeople with a disability.Pertemps People Development GroupPertemps People Development Group have been commissioned by WNF to providea range of services to priority neighbourhoods in Birmingham. The range of serviceson offer includes: Benefits advice Confidence building CV and interview preparation Gaining recognised qualifications One-to-one supportLesley Pattenson and Steve Bedser 100
  • 101. Carers and Work – a report for Birmingham City CouncilWe found Pertemps to be very flexible in their approach and they demonstratedgood awareness of the challenges that might face carers. Of particular merit was theflexibility in their approach to one-to-one support. They cited examples of having metclients in very local settings (community libraries etc.) to accommodate accessneeds and a good understanding of caring responsibilities and consequential timeconstraints, gained primarily through their experience of working with lone parents.The Learning HubThis project is based at University Hospital Birmingham and offers a range of pre-employment support focussed on the health and social care sector and theconstruction industry.The Learning Hub can help with finding the right job, filling in application forms andpreparing for interviews. The project also works with a range of colleges and privatetraining providers to equip jobseekers with the skills needed to access the jobs onoffer. Services include: information, advice and guidance on the range of jobs available, and in work benefit calculations accredited and customized training help in obtaining equipment/tools for trainee recruits on-site assessment training (construction jobs) work experience and taster placements in a range of occupationsGroundwork West MidlandsThe offer from Groundwork is similar, but with less expertise in the provision ofbenefits advice. However, Groundwork offer assistance in passing the driving theorytest and offer access to a wide range of work experience volunteering opportunitieswhich, as discussed elsewhere, might be a more appropriate outcome for anindividual carer.Fircroft College of Adult Education and Newman University CollegeBoth of these institutions present carers with a longer-term option focussed on skillsdevelopment that might ultimately result in (re)entry to further and higher education.This might be suitable for a carer who, during periodic review, has identified anambition to enter the employment market in a particular role, having (re)trainedand/or be part of the process of regaining confidence, prior to entry into the jobsmarket.Participation in education courses (at whatever level) could be an important strand ofthe pathway to work and, where carefully selected, might offer a suitably flexible formof study that will sit well alongside ongoing caring responsibility.FreshwindsFreshwinds (based in Selly Oak) offer a city-wide service of advice and guidance foranyone with employment and training needs. Some of their service provision isLesley Pattenson and Steve Bedser 101
  • 102. Carers and Work – a report for Birmingham City Councildirected through Children‟s Centres with the provision of pre-employment training toparents.The content of Freshwind‟s offer includes a variety of „soft‟ skills such as confidencebuilding, teamwork and motivation, with additional accredited training in Health andSafety and food hygiene. One-to-one sessions are available upon request, providingsupport with CV building and other „employment tools‟.Freshwinds have developed a partnership approach, working alongside theNorthfield Town Centre partnership, training providers and community supportgroups.ASDA (Barnes Hill)We spoke to ASDA to canvass their opinion about the potential of creating flexiblework opportunities for carers in a retail environment. Large retail employers routinelyengage large numbers of part-time staff on very flexible shift patterns.Barnes Hill was identified as a basis of discussion, because it is a supermarket in thelate stages of the planning process, as part of ASDA‟s strategy to increase its retailpresence in Birmingham. Typically, the opening of a new store will attract supportfrom the company‟s national HR team, building a workforce from scratch. This is anideal opportunity to influence company policy, not least because ASDA have avested corporate interest in showcasing themselves as an exemplar employer tolend weight to any ongoing planning application.ASDA demonstrated a real willingness to incorporate specifically flexibleopportunities for carers as part of their overall workforce plan, citing examples offlexibility in existing stores. There is a key opportunity to develop a close relationshipwith ASDA in the coming months that might create a best practice case study forwider dissemination and implementation.Support for carers starting self-employmentBusiness LinkBusiness Link offer generic courses for people thinking of setting up their ownbusiness. These are not specific to carers, but are an invaluable tool for anyone witha business idea who is new to self-employment. The courses are supplemented byongoing one-to-one support for the first twelve months of trading.In tandem with this, many high street banks offer quite helpful support to new, smallbusinesses and HMRC (Revenue and Customs) provide very useful seminars. It isimportant that any carer pursuing self-employment as a serious option should beencouraged to properly understand the tax implications and company lawconsequences of their trading status.Business Insight - Birmingham Central LibraryBusiness Insight, located within Birmingham Central Library, is a comprehensive,one-stop shop for anyone contemplating setting up their own business. It sets out toLesley Pattenson and Steve Bedser 102
  • 103. Carers and Work – a report for Birmingham City Councilprovide advice using a combination of face-to-face, telephone and extensive e-support.25Support for carers already in employmentTrade UnionsThere is a significant body of good practice in supporting working carers through thetrade union movement. Recent legislative changes have largely been as a directresult of negotiation between trade unions and the last government and, at a nationallevel at least, there is good awareness of the issues affecting carers. Each of thefollowing trade unions has helpful materials on their websites that would assistcarers already in employment, particularly if they were in the process of negotiatingflexible working.Carers may wish to consider joining a trade union (if relevant to their workplace) tosupport them in negotiation with their employer to achieve flexible working. Thepresence of active trade unions might also be an indication of a workplace where acarer might find valuable support.  Unison  Unite  GMB  USDAW Employment Rights for CarersThe Work and Families Act 2006 and the Employment Rights Act 1996 give workingcarers‟ rights to help them manage work and caring including the right to requestflexible work and leave entitlement. These rights only apply to employees.Employment status can affect entitlement to statutory rights. For example, those whoare self employed, on a short-term contract or employed through an agency may notbe covered by these rights. Right to request flexible workingFlexible working can allow employees to manage both work and their caringresponsibilities. Since April 2007 carers have a right to request changes to theirworking patterns to better manage their caring. Right to time off in emergenciesAlso known as time off for dependants, this gives all employees the right to take areasonable amount of time off work to deal with an emergency involving adependant. Whether the time off is paid or not is at the discretion of the employer. Parental leaveAfter at least one years continuous service with an employer, employees withresponsibility for a child aged under 5, or under 18 if the child is entitled to DisabilityLiving Allowance, are entitled to:25 Further details can be accessed Pattenson and Steve Bedser 103
  • 104. Carers and Work – a report for Birmingham City Council  13 weeks (unpaid) leave per child to look after a child, or  18 weeks (unpaid) leave per child to look after a disabled childClearly, these statutory employment rights provide a helpful framework fornegotiation with employers, but we encountered reluctance on the part of somecarers to pursue these rights in the workplace. Reasons for this included a fear thatthis might damage the relationship between the carer and the employer and aconcern that asserting these rights might create tensions with other employees in theworkplace.Some carers might find it difficult to advocate for themselves in the workplace. Wehave already identified trade unions as a potential source of support, but otheroptions for support include:  Citizens‟ Advice Bureaux  ACAS (Advisory, conciliation and arbitration service)  Legal representation through solicitors specialising in employment law for employeesEach of these will offer initial advice about how to assert statutory rights in theworkplace, with the option of engaging further assistance as appropriate.Other background informationCarers UK Report – Who Cares WinsIn 2006, Carers UK published a report „Who Cares Wins: The Social and BusinessBenefits of Supporting Working Carers‟ as part of its ACE National project. The studyidentified a number of benefits to employers for providing a supportive environmentfor carers.Outcomes included a 26% reduction in stress related absence throughimplementation of flexible working; an increase in productivity, measured at 21%,which improved the company bottom line; and cost savings through the retention ofcarers using special leave arrangements.Crossroads Report – Juggling Work and CareThis report, published by Crossroads in 2008, emphasises the needs of workingcarers. In summary, it states that working carers need good quality, affordablesupport for care recipients so that they can continue working, in tandem withemployers willing to support carers at work so that they can continue caring.Lesley Pattenson and Steve Bedser 104
  • 105. Carers and Work – a report for Birmingham City CouncilAREAS FOR FUTURE INVESTIGATION AND DEVELOPMENTA number of factors and issues came to light in the course of the study eitherbroader observations on infrastructure, or specific issues raised by carers. These arenoted as suggestions for potential future work/investigation/ development.Strategic approach to developing carer supportThere are a lot of agencies with some sort of support or information role insupporting, informing or advising carers including a significant number receivingCouncil funding. We wondered whether they are all effective, do they have the samequality standards of service? Has there been any monitoring or evaluation? Whatreporting mechanisms are in place to the funders? Is there another model whichwould be more effective, particularly in the outreach to minority communities? Isthere a strategic approach to the development and funding of support or is it relianton applications from individual agencies? What are the gaps or overlaps?Networking and information sharingAmongst these various agencies, what mechanisms are in place to shareinformation, make cross-referrals, ensure consistency of information provided,identify knowledge gaps and referral routes. How are staff updated on newdevelopments whether legal, funded, rights, services etc. e.g. Are they all aware ofthe introduction of Carers‟ Champions at Job Centre Plus and who they are? Supportfor carers including the back to work pathway should be integrated to provide aseamless service.Direct PaymentsWe identified a significant lack of information, guidance, support and alternativeapproaches to recruiting, paying and managing contracts other than the PembertonTrust. There should be a network/forum for people receiving Direct Payments andone for people working on them, so members of neither group need to feel soisolated. The latter could include training opportunities. How do people manage,review, develop staff that they have working for them – (we suspect that they don‟t!!).Money savings in co-ordinated or shared recruitment and management could beconsiderable.Collective approach to developing businesses or home-workingopportunitiesThere was an obvious opportunity for carers to potentially achieve more by workingcollectively rather than individually and exploring, or investing in the potential to bringcarers together to establish Social Enterprises and other work opportunities could befruitful.Lesley Pattenson and Steve Bedser 105
  • 106. Carers and Work – a report for Birmingham City CouncilParent-carers of children with Autism Spectrum DisorderThis group of parents seemed to have a lot in common, not least of which was thefact that they were at least available for training or work during school hours.Conversely, the need to focus almost entirely on the child when at home was verydemanding and took all their time. The shared understanding might mean that thisgroup could work well together. In any case there was an overwhelming indicationthat there is a total lack of support for this group out of school hours/j holidays, andthat quite aside from issues of returning to work, the experience of this group ofparent-carers could be explored further to work in conjunction with relevantdepartments to try to improve their situation through provision of additional servicesfor their children.Faith groupsLinks with faith groups could be explored as sources of general support andpathways to access information, a role which seems to be underused currently. Aseparate piece of research might be fruitful.Lesley Pattenson and Steve Bedser 106
  • 107. Carers and Work – a report for Birmingham City CouncilAPPENDIX 1: OTHER RESEARCH“Carers‟ aspirations and decisions around work and retirement”Department of Work and Pensions Report 290 – SummaryHilary Arksey, Peter Kemp, Caroline Glendinning, Inna Kotchetkova andRosemary Tozer, 2005, ISBN 1 84123 896 1 26BACKGROUNDThere are an estimated 5.6 million people in Britain looking after a relative or friendin need of support because of age or frailty, physical or learning disability or illness.The Government aims to support carers in their caring role, and enable them tocontinue care-giving for as long as that is their wish. Many carers will be workingwhen the need to care arises, and most wish to carry on working. The Departmentfor Work and Pensions (DWP) commissioned research designed to help ascertainwhat can be done to assist carers to remain in work, or to return to work during orafter an episode of caring.RESEARCH METHODSThe first stage of the study was a national literature review to identify existingevidence on carers‟ employment and retirement issues. This was followed byqualitative research in four research sites selected to reflect different labour marketconditions. In-depth interviews were conducted with 80 carers with substantial caringresponsibilities to explore their hopes and decision-making in respect of working andretirement. Subsequently, a series of separate focus groups were held with front-lineprofessionals from Jobcentre Plus, social services departments and carers‟organisations who worked with carers to provide advice or support. The fieldworktook place between autumn 2004 and spring 2005.SUMMARY OF RELEVANT LITERATUREThe literature review indicated that most carers wish to remain in work and many arevery reluctant to quit. Many employed carers find it difficult to care at the same time;it appears to become more difficult once people provide over 20 hours of care perweek. It is co-resident, rather than extra-resident, carers who face the biggestobstacles. Interrupted or short working careers, or moving from full-time to part-timework, have implications for earnings and subsequent pension entitlements,especially if the caring episode lasts for many years. The evidence suggests thatmost carers appear to have little access to potential carer-friendly workplace policiesand practices, and even where they do exist carers can feel unable to takeadvantage of them. Most employers, in particular those in the private sector, givelittle consideration to carer-friendly work practices. A range of factors influencecarers‟ decisions about whether to remain in work or change their employmentstatus. These relate to whether they can afford to give up work, if they enjoy theirjob, stress levels at work, being out of work, and access to support. Being able toretire early with a full occupational pension or favourable retirement deal can be asignificant incentive to leave work in order to undertake caring duties, especially formen.26 Pattenson and Steve Bedser 107
  • 108. Carers and Work – a report for Birmingham City CouncilQUALITATIVE RESEARCH WITH CARERS AND PROFESSIONALSCarers’ decisions around employment and care-givingCarers‟ thinking and decisions about work, retirement and caring took into account awide range of factors, primarily: finances; their own physical and mental health;personal factors, for instance commitment to careers; work-related issues;availability of formal and informal support; issues related to the person looked after;distances and travelling times. The relative importance of these various factorsvaried according to whether or not carers were working, and how many hours perweek they worked. Generally, no single factor dominated, and decisions tended tobe the result of combinations of factors, which could even be contradictory. However,carers‟ perceptions of their own health and well-being were very importantconsiderations in decisions about whether to work and if so, how many hours perweek to work. Uncertainties and unknown factors, for example, relating to changes inhealth status of both the carer and the care recipient or changes at importanttransition times such as moving from children‟s services to adult services, madedecision-making even more complicated for carers.Retirement and pension planningCarers found planning for retirement difficult, partly because it was influenced bymany unknown factors related to the caring situation. However, there was evidencethat some carers did not plan ahead because of reasons specific to care-giving.These included a lack of time because of caring responsibilities, not knowingwhether adult disabled children would be living independently or still at home withparents, and the possibility of having to pay for residential or nursing home care. Formany carers, it was more important to attend to current financial affairs andcommitments rather than make financial provisions for a future retirement that formany people could be a considerable number of years away. Carers who were stillbuying their own homes emphasised the need to pay off mortgages as they did notwant to risk losing their homes.Many carers had limited knowledge about pensions generally, and the impact ofcare-giving on pensions in particular. Likewise, front-line professionals from all threeoccupational groups felt they had information gaps relating to pensions and tendedto refer carers on to specialist agencies rather than provide carers with misleading orincomplete information themselves.Support from statutory agenciesJobcentre PlusOnly a few carers had taken part in a Work Focused Interview (WFI) with aJobcentre Plus personal adviser. The interviews did not tend to influence carers‟decisions about obtaining paid work as long as their current (caring) situationprevailed. However, carers appreciated the advice, information and better-off-in-workcalculations provided by advisers. A key weakness identified by carers related toadvisers‟ perceived lack of knowledge about caring in general, and the impact ofcaring on carers‟ ability to work in particular.Personal advisers conducted fewer WFIs with carers compared with other customergroups, which hampered their ability to acquire detailed knowledge of the mainchallenges and issues for carers wanting to work and care. Advisers believed thatmany carers had already made the decision not to work before they participated in aWFI. Consequently, they concentrated on raising carers‟ awareness about howJobcentre Plus could help them once their caring situation changed. Personaladvisers identified a range of organisational constraints (e.g. carers not being apriority group as in the same way as Incapacity Benefit (IB) claimants or disabledLesley Pattenson and Steve Bedser 108
  • 109. Carers and Work – a report for Birmingham City Councilpeople were; the inflexibility of electronic diaries) that restricted the effectiveness ofthe support they could offer to carers.Social services departmentsMany carers (or care recipients) were unwilling to accept assistance from socialservices. Whilst some carers who did receive help were full of praise, others werecritical. There was no evidence of a direct link between the number of hours thatcarers worked and the levels of support they received. Generally, social servicessupport was not essential to the ability of carers to undertake paid work partlybecause it did not easily accommodate work hours or patterns – for instance, daycentre hours did not always cover the full working day. Services that carers saidwould make it easier for them to work and care included longer day centre hours,childcare and after school clubs for disabled children and practical help withdomestic responsibilities.Financial support for carersCarer‟s Allowance (CA) is the main welfare benefit for carers. Both carers andprofessionals regarded the value of the benefit as too small. Carers commonlyagreed that the earnings threshold was low and, therefore, restrictive. There wasevidence that the benefit might not act as an incentive to work, and that it could actas a barrier to working more hours. CA was not flexible enough for some carers, forexample, paid work could jeopardise receipt of the benefit because of the rulesregarding spreading earnings over a reasonable time period. The ceiling on earningsmeant that carers who were working were unable to offer employers flexibility byoccasionally working additional hours.Workplace policies and practicesEmployed carers benefited from both formal and informal workplace policies andpractices. For many, these were essential to their ability to combine work and care.Flexible start and finish times, together with the ability to take time off in emergenciesor for planned hospital or doctor‟s appointments, were particularly important. So, too,were sympathetic line managers and colleagues. Professionals believed thatemployment opportunities did exist for carers who wanted to combine work and care,but such jobs were typically low paid, unskilled and possibly part-time and/orseasonal. They suggested that a combination of legislation and awareness raisinghad the potential to encourage employers to change workplace practices to betteraccommodate the needs of working carers.Carers’ centresCarers‟ centres provide information, advice and support to assist carers in obtainingthe services they need. Not all carers wanted assistance from carers‟ centres, butthose who were in touch commented favourably on the help they received. Centresindirectly helped employed carers to sustain paid work by helping to reduce theirlevels of stress. They achieved this by offering listening services, counselling,advocacy, referrals to social services departments and access to short breaks.Employed carers, especially those working full-time, could find it difficult to accesshelp from Carers‟ Centres because the latter‟s office hours and their working hourswere often the same.Inter-agency collaborationInter-agency collaboration between Jobcentre Plus, social services departments andcarers‟ organisations was limited. This was, in part, a reflection of importantinformation gaps about what organisations existed to support carers and whatservices they offered. Jobcentre Plus staff were the most isolated professionalgroup; personal advisers‟ knowledge of the support provided by Carers‟ Centres andsocial services was very limited.Lesley Pattenson and Steve Bedser 109
  • 110. Carers and Work – a report for Birmingham City Council“Employment Support for Carers” - September 200927Sarah Vickerstaff, Wendy Loretto, Alison Milne, Elaine Alden, Jenny Billings,and Phil White, Universities of Kent and EdinburghThe summary of findings of research into employment support which enables carersto combine work and caring successfully28.IMPACT OF CARING Long-term caring had the most adverse impact on carers‟ physical, emotional and financial health, with dementia caring having the most significant impact. Early retirement and long-term sickness appeared to be the strategy most frequently adopted by long-term carers as exit routes from formal employment. For some carers, caring imposed restrictions on the type and duration of employment, as well as job mobility and career planning. For those not currently in paid work, barriers included finding employment with flexible hours, the perception that employers would not offer positions due to their caring responsibilities and concerns about the impact of their paid work on the well-being of the care recipient. Despite the practical difficulties of combining paid work and care, carers largely viewed paid work as a source of financial stability and personal satisfaction.EFFECTIVENESS OF EXISTING SERVICES Carers obtained a wide range of support from formal and informal sources such as the NHS, Social Services, voluntary organisations, family and friends as well as the DWP. Workplace support was inconsistent and most carers in the study felt that employers had a predominantly passive approach. Informal flexibility at work was highly valued with some carers reporting that they achieved this over a long period of time by establishing trust with their employers. Examples of informal flexibility included ability of the organisation to accommodate shift changes or early or late arrivals according to the fluctuating and unpredictable demands of caring. DWP and Jobcentre Plus were generally not viewed as a source of support for carers for several reasons: its environment which was perceived to be unwelcoming; the propensity of advisers to classify carers with the economically inactive during interviews; the lack of knowledge of Jobcentre Plus staff with regards to carer issues; and the inability of the staff to identify jobs that are appropriate in terms of their flexibility. In conclusion, the care system was perceived to be fragmented. There was little evidence of interagency collaboration and there was a strong desire for a single port of call for advice and help. The voluntary sector came closest to being a model of the one-stop-shop. Following last year‟s Carers‟ Strategy, the Government plans to introduce a range of initiatives to better support carers into employment and retain those already in employment.27 Pattenson and Steve Bedser 110
  • 111. Carers and Work – a report for Birmingham City Council“Understanding workless people and communities: A literature review”Research Report No. 255Helen Ritchie, Jo Casebourne and Jo Rick29EXTRACT FROM CHAPTER 2: W HO ARE THE WORKLESS ? P. 25 SECTION 2.5 CARERSHaving caring responsibilities for a sick child or an adult can impede an individual‟ssuccess in the labour market and opportunity for social mobility. In concentrations ofworklessness, one-in-ten people provide unpaid care, with 32 per cent providingmore than 50 hours of unpaid care each week. This compares to 20 per cent ofcarers in the population as a whole providing more than 50 hours a week of unpaidcare (Social Exclusion Unit, 2004a). Half of carers of working age providing over 20hours of care per week do not work; 650,000 people in all (Howard, 2002).Carers face a number of barriers to employment (Howard, 2002). Carers can oftenbe affected by a lack of skills and confidence, especially if they have spent yearsoutside the formal labour market and have been isolated in the home. Some mayhave additional individual-level barriers such as poor health or age. Carers can alsobe disadvantaged by a lack of information, and may have problems gettingalternative care from support services when they are in employment. They may facefinancial disincentives to work, and employers do not always understand the needsof carer employees or offer appropriate flexible working practices (Howard 2002).A survey of over 1,000 carers in 1996 found that, despite the importance that carersnot in employment placed on returning to work, they were sceptical about theirchances of doing so. The majority felt that it would either be impossible or fairlydifficult to find work again, and the main issue of concern was lack of experience indealing with new technology (Caring Costs Alliance, 1996). A more recent surveyconducted by the EOC (2004) found that 18 per cent of carers had left, or beenunable to take, a job because of caring responsibilities, with 50 per cent stating thatthe one thing that would make most difference to their life as a carer was better careservices.“Provisions for people with strokes in rural communities”, 2009 - TheInstitute of Public Policy Research report for the Rural CommissionThe report noted that “For younger carers juggling caring responsibilities alongsideexisting employment can be particularly challenging. Several carers commented onthe importance of their employer being flexible with their working arrangements.There is currently no statutory requirement entitling carers to flexible workingarrangements and so flexibility is determined at the discretion of the employer.”3029 Pattenson and Steve Bedser 111
  • 112. Carers and Work – a report for Birmingham City CouncilAPPENDIX 2: RECRUITMENTDate / mechanism Organisations / eventsMon 11th Jan Information day for parents of children with disabilities (Family Information Service Centre for the Child) (spoke to most of the 20+ individual stands)13th January Carers Partnership Board (presentation) thMon 25 Jan North Birmingham Interagency Group (presentation)Tues 26th Jan Carers Advisory Group (presentation and personal approaches to attendees)Friday 29th Jan South West Birmingham Community Association (presentation)Thurs 4th Feb Parent Views Count (presentation and personal approaches to attendees)Thu 18th Feb Carers UK (presentation and personal approaches to attendees)e-mail networks e-mail circulations of posters, flyers and professional briefings forwarded by a number of the aboveNewsletters CERS newsletter, Carers‟ Centre newsletter, article then reproduced in another carers‟ newsletter.Posters VariousIndividual projects  Chinese Carers Support Project (Chinese Communityapproached Centre)  Somali Carers Support Group (SODES – Somali Disability and Elders Support  Young Carers, Crossroads  Bangla Sheba (BME mental health carers) BCC  Kushigo (African Community Council)  BME Carers Support, Birmingham Asian Resource Centre  Benefit Uptake for Carers, BCCOther contacts Several Carer Support groups in South BirminghamLesley Pattenson and Steve Bedser 112
  • 113. Carers and Work – a report for Birmingham City CouncilAPPENDIX 3: PARENTS VIEWS COUNT MEETING - GROUPDISCUSSION, FEBRUARY 2010One workgroup at this meeting considered employment issues from the carer/parentperspective. There were approximately 10 people in the group, including two menand a mix of ethnicity and age. All contributed their own varied experiences, barriers,aspirations and expectations. These points were all explored or reiterated in themain study.Employment – experience and expectations: Flipchart of discussion points  Redundancy (personal situation)  Voluntary work (several)  Accommodating hours (round caring responsibilities)  Would like to know more about (getting into paid) employment  Shifts/hours are a big barrier  Hospital appointments / doctors (need to arrange around)  Making up hours (lost when caring needs take away from work)  (Impact on) home life  Voluntary sector (easier because) hours to choose  Experience (lack of) is a barrier  Childcare (needed)  When child is in nursery (availability)  Parents have other responsibilities (maybe not just the child with special needs)  Employers‟ understanding (lack of)  Personal health (may be restricting)  Demands of school (disrupts ability to work during day  Bank hours (as in agency)  Flexible hours  Self-employed (can work flexibly, from home)Lesley Pattenson and Steve Bedser 113
  • 114. Carers and Work – a report for Birmingham City CouncilAPPENDIX 4: INTERVIEWEE PROFILESParticipants are listed alphabetically by chosen pseudonym. They are white BritishChristian unless otherwise indicated.ALASTAIR, 30s, is gay and cares for his partner who has ongoing health problems,is epileptic and has suffered various brain and physical injuries as a result of fallsduring fits. He is able to work full time as a result of an extremely flexible post andmanager and the support of friends and family.ALBERT is in his 70s, cared for his wife for many years until her death, undertakes arange of voluntary activities and now has a paid carer of his own through DirectPayments.AMIE, 40s, is a single parent who came from Africa via Europe, has a son withbehavioural problems, undiagnosed and without additional educational support.Although her English is poor, she managed to undertake some part time shift workwhen another son or cousin could look after her son but this support has gone andshe is now seeking support and guidance to help her towards alternative work.ANNA, in her 30s, is a black European Pentecostal doctor and mother to two pre-school children. She is working full-time following maternity leave which coincidedwith her husband having a severe stroke. Not working was not an option, for legaland financial reasons and she has effective domestic organisation, paid childcare athome and supportive friends as well as a husband striving to regain a littleindependence.CATHERINE, 50s, is married but takes main responsibility for caring for two of herthree adult children who have various learning and communication difficulties andbehavioural problems since both her husband and middle son work full time. Shehas quite bad arthritis and problems following an accident. She managed some parttime work while supporting the eldest son but this had to stop when her youngestson‟s problems also impacted. She has done various training courses, volunteeringand agency work but needs work that fits in with college holidays for her youngestson.CHRISTINE, 40s, has two school age children with ADH and additional problemsboth needing a lot of support. She and her husband tried various approaches tosharing working and caring but ultimately she had to give up work. She has tried ahuge variety of approaches to income generation with some creative ideas of home-based working but ultimately all failed due to the conflict with caring. She has ideasabout training and future self-employment.ELLIE, in her 50s, cares for an adult child with learning difficulties who needs 24hour care but goes to a day centre during the week. She stopped working as asecretary to be a full time mother at the birth of the first of her four children, so hasbeen out of paid work for a little over 30 years and has not done any training duringthat time either.Lesley Pattenson and Steve Bedser 114
  • 115. Carers and Work – a report for Birmingham City CouncilHAZEL, a teacher, although in her 70s, established a way of working privately part-time from home to accommodate caring for her husband and has continued to do sosince his death.JANE, 30s, cares for her teenaged son with Asperger‟s Syndrome who needsconstant prompting and supervision, and previously also her grandmother, Althoughsucceeding in working part-time she lost her job which she partly blames on theconflict with her caring responsibilities and she is currently out of work, embarking onan OU course and actively seeking a new position.JEAN has held social and health care assistant posts for nearly 20 years sincecoming to the UK from Jamaica. She has cared for her husband, who had a stroke17 years ago, but, now in her 60s, has accepted early retirement since his health isdeteriorating. However she would like to find suitable part-time work.JOHN, 50s, has high functioning autism but is very well qualified and experienced inthe field of learning disability care. He has been a carer for his disabled wife sincemarriage, and more recently, his teenage son who has now been diagnosed withautism. He is seeking alternative work since having problems with his most recentpost in part due to his caring role.KIRAN, a married Sikh in her 50s, has an adult daughter with Down‟s Syndromewho has had no social care since leaving school over 10 years ago. Paid work ismore a dream than a reality given that Kiran‟s own health is poor and deterioratingalthough she is able to do some voluntary work.LAURA is in her 50s, a single parent of 4 children, all living at home, the youngest ofwhom became learning disabled in childhood. Although recently moved from schoolto college he still needs ongoing support and supervision. Laura went to college,attained qualifications, undertook significant voluntary work and then secured a fulltime post two years ago, her first paid work since having children.LISA, 50s, cares for her partner with a progressive and terminal disease. Thanks toa combination of factors including an innovative home-working scheme introducedby her employer, extensive paid care funded by direct payments, and supportivechildren, she is able to work full-time from home.LOUISE, in her 40s, lives with her husband and three or her children still at school,the youngest child having a combination of special needs and requiring support. Shealso supports her mother who lives nearby. Although she has done some part-timework since motherhood, she would like to return to paid work and has a clear workgoal but is frustrated by lack of information on achieving it.MAHMOOD, a Muslim in his 30s, is well qualified and experienced attaining successin middle management levels in the civil service, but has been a full time carer for hismother, with whom he lives, since she had a stroke. He does not have any supportfrom family members but is able to undertake both voluntary work activities and jobseeking when his mother is at day care facility.MARGARET is in her 60s and cares for her adult child with Down‟s Syndrome. Shehas been a single parent for the past 17 years during which she worked part time.Lesley Pattenson and Steve Bedser 115
  • 116. Carers and Work – a report for Birmingham City CouncilFollowing receipt of direct payments she has established a creative opportunity foremployment for her daughter and others and plays a leading organisational role.MARY now in her 40s, has been a carer since age 9, initially for her mother who hadserious mental health problems and has cared for a range of adult siblings and theirchildren in addition to her own three teenage/adult children all of whom have AutismSpectrum Disorders and require considerable support. She is a single parent andhas been planning for a return to work by the time the younger children start college.She has been pursuing home-based educational qualifications at home and hasdone some successful work placements.MARYON, 60s, a Methodist convert, works part-time to accommodate her caringrole for her mother with whom she lives. She faces certain redundancy in the nextfew months and is desperate to find an alternative post which will fit as well with hercaring responsibilities, from which she finds working a necessary respite.MAXINE, in her 50s, is a Muslim convert who cared for her mother for 40 years untilher death and has not worked for many years. However she has become involved ina range of voluntary activities over the past 5 years. She is well supported by herhusband and now wishes to gain paid employment or perhaps start in business.NAFRA, a Muslim in her 30s, is a single parent who has come to the UK from Africavia Europe. She has several children one of whom has extremely demanding anddisruptive behaviour. With only occasional help from her sister, she hopes to masterEnglish then take a child-care course at some point in the future.ROGER, in his 50s, vacillated between employment and unemployment since hisfather died, for whom he cared. He is currently receiving support to return to work.SHARINA is a married Asian British Muslim in her 30s. She started caring inchildhood looking after her severely handicapped brother until he died. She currentlycares for her child with ASD, 3 other children and her blind Aunt who lives nearby.She has various ongoing health problems including depression which is a significantfactor holding her back in her aspiration to attain paid work or education.SHAZIA, in her 40s, is a Muslim and has two children with ASD at primary school,where she has done some voluntary work. She has also taken some collegecourses.VALERIE, a spiritualist in her 50s, has extensive experience in health and socialcare management. She gave up this work to support her elderly father who livesclose by. She does some limited part-time work from home but needs to increasetheir collective income and is thwarted by limitations of the direct payments scheme.VERA, of mixed heritage, gave up her teaching post to care for her child with ASD.Now in her 50s she wants to return to work but not teaching.YEE, 40s, is Chinese and moved to the UK with her husband and son, now ateenager, who has special needs. In Hong Kong she was able to work full timebecause of family and paid support but has not worked in the UK. She is learning,but not confident, in English.Lesley Pattenson and Steve Bedser 116
  • 117. Carers and Work – a report for Birmingham City CouncilAPPENDIX 5: LINES OF ENQUIRYThe following mind maps were used as prompts to explore areas of the interviewees‟circumstances, recognising that carers‟ stories will not necessarily follow a linearroute, and provides a means of bypassing areas which are clearly not relevant. Italso enables a more informal dialogue between the interviewer and interviewee withthe ability to reflect back, seek clarification and explore points without constraints ofquestionnaires or interview schedules. It has the added benefit of potentially formingthe basis of a tool which could be used within the pathway as part of the initialholistic assessment of the carer‟s situation, experience and work aspirations.Lesley Pattenson and Steve Bedser 117
  • 118. Carers and Work – a report for Birmingham City CouncilLesley Pattenson and Steve Bedser 118
  • 119. Carers and Work – a report for Birmingham City CouncilAPPENDIX 6: ORGANISATIONS PROMOTING THEMSELVES ASOFFERING SUPPORT TO CARERS AND PARENT-CARERSPurely as an illustration of the range of organisations promoting themselves ashaving something to offer to carers, the table below indicates the organisationswhich had a stall at recent events in South West Birmingham aimed at Parents ofchildren with disabilities (organised by Family Information Service Centre for theChild) and Carers (organised by BCC Carers Support for Carers Week).Organisation Parent-carers CarersABC Age Concern Weoley Castle Arthritis Care Assist Birmingham Care Autism West Midlands  BCC Library Services BCC Neighbourhood Office  BCOP BID Birmingham Adult Education Service Birmingham Law Centre Business Transformation CERS  Child Support Agency Children‟s Centre Chinnbrook Community SafetyContact a Family Dens of Equality Disability Resource Centre Disabled Children‟s Service Early Years Development Workers Expert Patient Scheme Family Information Services Fit4Life Focus on blindness Freshwinds Job Centre Plus Kids Inclusion Project Link-Upp Lloyds Pharmacy Midland Mencap  MIND Nail Care Service OPAS Assessment and Support Planning Opening Doors for Carers  Parkinson‟s Society Pensions Service Resources for Autism South Birmingham PCT Carers Support Team Stroke Association Lesley Pattenson and Steve Bedser 119
  • 120. Carers and Work – a report for Birmingham City CouncilAPPENDIX 7: THE CONSULTANTSThis report was researched and produced by Lesley Pattenson and Steve Bedser,who are free-lance consultants who work both independently and in partnership oncommissions.Lesley PattensonLesley Pattenson is a successful consultant, researcher, project manager and trainerwith a proven track record of delivery in user-focused change initiatives at local, regionaland national levels. Working with both the statutory sector and the voluntary andcommunity sector, she offers expertise in diversity and equality policy and practice;user, community and public involvement initiatives; quantitative and qualitative researchmethodology. She has particular interests in carers; stroke services and support; parksand open spaces; and women‟s, disabled peoples, lesbian, gay and bisexualpeoples issues. She has extensive experience in establishing, developing andsupporting community and voluntary organisations in both paid and unpaid roles, and isa member of advisory and strategic groups at constituency, city and regional levels.Lesley Pattenson can be contacted on:07976 274271 or BedserSteve Bedser is the Managing Director of Fairy Dust Consulting, a company thatprovides social policy support to the public and voluntary sectors. Steve had a seniorcareer in the health service (he was Director of Primary Care in a West MidlandsPCT) prior to becoming Executive Director of a Groundwork (environmentalregeneration) trust. Alongside his work portfolio, Steve is a senior Councillor inEurope‟s largest local authority, with portfolio responsibility for Equalities and HumanResources.Steve Bedser can be contacted on:07989 965610 or steve.bedser@fairydustconsulting.comJuly 2010Report available from Birmingham City Council Carers‟ CommissionerAdults and Communities Directorate,Level 4Louisa Ryland House44 Newhall StreetBirminghamB3 3PLLesley Pattenson and Steve Bedser 120