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Our right to be and do


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Our right to be and do

  1. 1. Our right to be and do Barriers to Employment for People with Neurological Conditions A report by The Working Life Project and Network Employment Funded by the European Social Fund through Merseyside Expanding Horizons. Research conducted by Paradigm. March 2003 1
  2. 2. Acknowledgements This research would not have happened without the support and contribution of several people. Thanks to Nicola Daley, Colin Goodwin, Brian Simpson, Peter Kinsella, Pam Wilkinson, The admin team at Network Employment, The Glaxo Neurological Centre staff, Brian Bennett at Radical, Julie Olsen, Rebecca Beckwith, the co- researchers David Britt, Bob Deus and Sue Brooks-Macdonald, the professionals at The Walton Centre and employers across Merseyside who took part in this project, and finally, the research participants with neurological conditions that gave their time, energy and were willing to share their stories. 2
  3. 3. Section 1 - Introduction This report is about the employment experiences of people with neurological conditions. It is the result of a partnership between The Working Life Project and Network Employment who provide employment advice and support to people with neurological conditions across Merseyside. It has been funded by the European Social Fund through Merseyside Expanding Horizons and the research was carried out by Paradigm, an independent training and consultancy organisation. The belief in this research began with a shared question – what is it that stands in the way of the people we support gaining and retaining jobs? Is it the employment ‘system’, or employers, is it health and other professionals or people themselves – or a combination of factors or others unknown? Although we may make assumptions about what we believe the barriers to be, it is people themselves and those involved in supporting or employing them that need to be listened to. Our modest aims for this research were to achieve a clearer indication of where to focus and channel the resources of the two projects – Network Employment and The Working Life Project. What we uncovered was a complex and compelling picture of people fighting desperately for their right to be and do. Being and doing “The capacity to work is an important part of a person’s self-esteem. Work contributes to shaping the person”1 Being able to work, create, be part of something and contribute to others is a fundamental part of life, and is intrinsically linked to who we are and how we feel about ourselves2,3,4. Some research has even suggested that our physical well-being is linked to whether we are meaningfully occupied5. Paid employment is one example of how we can meet our human desire to 3
  4. 4. construct and ‘do’. However, despite recent research showing a rise in the number employers employing disabled people (65%), there are still concerns about the lack of active encouragement of disabled applicants, employer’s lack of knowledge and awareness about disability discrimination and the number and type of adjustments made to workplaces to make them accessible to disabled people6. The barriers to employment for disabled people in general have been explored, for example in the 1994 study ‘Working Through Barriers’7. In this investigation a group of disabled people listed the main barriers they face in looking for, or being in, employment as: ‘the benefit system, transport, lack of information and advice, attitudes of employers, physical environment in the workplace, level of qualification and skill’. Similarly, in the more recent publication, ‘Disabled for Life’4, key barriers to employment were described as financial (relating to benefits, uncertainty about income), personal (type and severity of impairment and self perception of capabilities), external (relating to knowledge, awareness or availability of employment) and social (social attitudes and discrimination). Within this study a significant number of disabled participants (37 per cent) claimed to have experienced some kind of prejudice or unfair treatment in the workplace and many people felt they had experienced prejudice during the application process. Neurological Conditions – finding a definition It is from this backdrop of experiences of disabled people that we set out to investigate the experiences of people with neurological conditions. However, finding a definition for the umbrella term, ‘neurological conditions’, was to be our first difficulty. A definition of neurological conditions given by the Neurological Alliance states that, 4
  5. 5. “Neurological conditions result from abnormal function or damage (caused by illness or injury) to the brain, spinal column or nerves. They have various causes, many of which are not yet known.”8 The more familiar causes include stroke, multiple sclerosis, brain/spinal injury, epilepsy, Alzheimer’s and motor neurone disease but the range extends to include conditions such as CJD, Guillain Barre Syndrome and Rett syndrome. The common features of neurological conditions described by Hewer9 are; that they are large in number, there are few that are totally curable, they are associated with many symptoms, they are a major cause of disability and account for a high proportion of severely disabled people under the age of 65 and there are many adverse effects that can be reduced. In addition neurological conditions can affect people at different stages in life. They can be present from birth or have a sudden onset due to illness or injury, and whilst some conditions may stabilise or improve, others can cause a rapid or prolonged deterioration of a person’s quality of life. With potential for such a wide scope of employment experiences, based on very different conditions and/or very different presenting symptoms and severity of impairment, we set out to include anyone in the project who had been given a diagnosis of ‘neurological condition’ but acknowledged that this would be a diverse group of people. We took our lead from the fact that the two projects are services set up to support people with ‘neurological conditions’. 5
  6. 6. Section 2 - Methodology Outline of the project The project used a combination of research methods and involved three main groups of people – people with neurological conditions, professionals involved in supporting people with neurological conditions and employers. The employer group was then split into those that we knew had employed a person with a neurological condition and were already linked to either Network Employment or The Working Life Project, and an equal number of employers whose history of employing disabled people or not was unknown to us. These were roughly matched in type and size of businesses to those in the first group. Each group was sent questionnaires which, although covering similar issues, were tailored to their particular standpoint. We followed up some people with semi-structured interviews based on the major themes emerging from the questionnaires. Following the first two stages we held a focus workshop for people with neurological conditions to present back the findings so far and define the issues more clearly. A final developmental workshop was held with people with neurological conditions and employer and professional representatives, to share ideas and create possible strategies to overcome the issues raised throughout the previous stages of the research. Participatory Approach Although the project had been designed and commissioned by people in professional roles we adopted a participatory research model and recruited three co-researchers who have or have had a neurological condition. These three individuals had diverse backgrounds and all experienced a different neurological condition. They were involved in all stages following the initial proposal, from preparing the application for ethical approval to the final report. 6
  7. 7. In particular the co-researchers influenced the design of the questionnaire and the way in which the interviews and workshops were carried out. Questionnaires The questionnaires were developed as a means to narrowing down the broad area of barriers to employment and were based on what disabled people had said in earlier studies about barriers they had experienced. We knew that our questionnaires were insufficient in themselves to thoroughly investigate this area but we needed basic information around which to develop the interviews and focus groups. Each of the questionnaires sought information about the respondent and their views on what the barriers to employment are for people with neurological conditions, or what they thought about people with neurological conditions as employees. We sent out 386 questionnaires in total and had 100 responses. 42 were responses from people with neurological conditions, 49 from professionals and a very low 9 responses from employers. Interviews The interview stage was a time for us to listen deeper to the issues that were raised during the questionnaires. Each respondent to the questionnaire could indicate whether they would be willing to be interviewed. 57 people initially agreed to interviews. When contacted some people then decided to withdraw from the project and some we could not contact. As a result, 39 people were interviewed (21 people with neurological conditions, 13 professionals and 5 employers). Focus Groups The first focus group was designed to consolidate what we had learned during the research so far. 10 people with neurological conditions came and 7
  8. 8. expressed their views on the results so far and helped to define some of the key themes. In designing the project we had included a developmental dimension – wanting not only to find out what the barriers are, but to explore ideas for overcoming them. This final stage of the project gave an opportunity to be creative and productive with our thoughts. Ideas were generated and proposed as potential pilot projects. 12 people came – 10 people with neurological conditions, 1 employer and 1 professional. 8
  9. 9. Section 3 - Key Findings This section presents the key findings from the different perspectives we gained by involving people with neurological conditions, professionals and employers. Under each major theme we present the findings from each group. Key findings Across all the subgroups key themes were; Barriers to employment  The neurological condition itself  The person’s own perception of their condition and resulting incapacity  Attitudes of employers and colleagues  Lack of confidence or motivation  System issues Things that help  Family and friends  Understanding and supportive employers  Self-determination and belief  The Glaxo Neurological Centre About support  DEAs and employment service, employers and some health professionals can be unhelpful  The Glaxo Neurological Centre, some health professionals and some DEAs can be helpful  The support available is limited and uncoordinated 9
  10. 10.  More information and advice is needed across the board on the support available Theme 1 - Barriers to employment People with neurological conditions said… The majority of people with neurological conditions had experienced some form of barrier to employment, whether they were currently employed or not. There were examples of discrimination, lack of understanding and support and a feeling of having to ‘fight the system’. People were incredibly open and honest about the situations they faced, often with little knowledge about what their rights were and who could help them. The neurological condition The people with neurological conditions we interviewed ranged from being employed, medically retired, unemployed, volunteering and off sick. There was also wide variation in how long people had been diagnosed with their condition and what disabilities they had been left with. Many people said their condition itself was a barrier to employment, and restricted them from doing certain jobs. In particular, people commented on difficulties with short term memory, reduced powers of concentration, impaired cognitive skills, and fatigue. Some people felt they had lost jobs as a result of these things and for others it stands in the way of career progression: “You find you’re at a crossroads. I had something terrible happening to me and then I found myself without a job” “it’s going to be harder for me to diversify my career with a disability”. However, people whose disability was ‘invisible’ equally face prejudice for not ‘displaying’ obvious symptoms of their condition: 10
  11. 11. “Because it’s invisible it’s a barrier – people don’t understand” “If you look outwardly normal people think you’re fine”. Attitudes Many people said the negative attitudes of their employers and colleagues and their unwillingness to support them or understand their condition is a huge barrier to employment. Alarming accounts were provided of the difficulties in fighting for adaptations and modifications to working environments or practices, and consequent labelling as ‘trouble makers’. Several people with MS shared experiences of having to battle for access to a cooler work room to help manage their condition. Other people felt their employers had made false assumptions about their condition – in the case of someone with epilepsy this meant they had tried to wrongly manage a seizure. All these situations had led to more anxiety which was often cited as a factor that made some neurological conditions worse. Some people said they felt their colleagues resented them because of their condition. A few people said they thought their colleagues were concerned about the impact it might have to their workloads and that people assumed they weren’t “pulling their weight”. Considerable ignorance about neurological conditions had been demonstrated by many employers and colleagues. Unsurprisingly this gave rise to concerns that employers consider people with neurological conditions as ‘stupid’ or confuse their diagnosis with a mental illness. In one case even asking for support created feelings of inadequacy: “I asked for help once but they made me feel like an imbecile. I don’t want my illness to define me.” 11
  12. 12. Lack of confidence and motivation The returned questionnaires indicated that most people felt a lack of confidence or self esteem was a barrier for them in employment and this issue was followed up during the interviews. People said that their lack of confidence sometimes came through having to fight for what they needed, such as changes to their work environments. The frustration caused by trying to change situations also affected the motivation to look for work: “My motivation has been taken out of me little by little with all the jobs I was going for and not getting anywhere.” A big cause of concern was the unpredictability of a person’s condition and how this can affect day to day confidence levels and feelings of adequacy. Several people talked about their fears and anxieties about when their condition would deteriorate and then how they would rebuild their confidence following a relapse: “After you’ve had a really bad relapse you lose your confidence and no-one else can give you your confidence back.” People had found ways of coping with these issues and cited familiar situations, family, friends and the right conditions in work as things that help: “I feel like a new person. Partly because I’ve been diagnosed and I can deal with it and partly because things have been put in place at work.” Many people said they felt very confident about working and knew their skills, abilities and value in the workplace. A few people said they had felt over- confident about what they could do and this had caused them problems with taking on too much. In some cases people were hoping that either the right 12
  13. 13. work environment or meeting the right employer would enable them to live up to their expectations. The system It is difficult to describe the sense of ‘us versus the system’ that came across throughout the interviews, suffice it to say that no-one said bureaucracy, rules, regulations, legislation, the benefits system, systems and structures helped. Despite government legislation about the rights of disabled people in employment, people shared experiences of their employers doing the minimum that was required of them. In addition, for some people, even getting the minimum had been a battle and had taken a long time. One person we interviewed was still waiting for his employer to decide what would happen with his job and felt that deliberations were ‘going round in circles’. Some people also felt they hadn’t been given the right information when they were diagnosed about how to protect their jobs and navigate their way through employment: “I didn’t know what to ask for. The leaflet you get, they’re all uplifting stories that are the exception to the rule – it lulls you into a false sense of security, I think that’s really wrong. There are no guidelines at all about what you need to protect yourself.” Health and safety legislation was cited as an inflexible barrier that automatically excluded some people from certain jobs and created fears for employers about how an employee with a neurological condition might behave: “I’ve applied for loads of jobs, teaching, training, social work, nursing – but when I’ve put epilepsy down you don’t hear anything.” In some cases people said they thought managers were fearful of litigation. 13
  14. 14. The benefits systems was also seen as a barrier – both in the difficulty some people have with understanding the changes and the prospect of losing benefits with no confidence in a job lasting. Professionals said… Although we had approached professionals in a variety of roles during the questionnaire stage, we only received returns from professionals in ‘health’ or medical services. This should be taken into account throughout the reading of this report. We were also unfortunately unable to include professionals from a major provider of support and rehabilitation for people with neurological conditions as they decided, as an organisation, not to take part in this research. All the professionals involved in this project therefore are either based at, or connected to, The Walton Centre for Neurology and Neurosurgery in Liverpool. The overwhelming view of professionals was that people with neurological conditions face incredibly resistant barriers to employment. They gave a perspective on what support is being offered and how they might be helping. The majority of professionals we spoke to thought people with neurological conditions have the potential to be good employees – and some professionals saw employees with neurological conditions as the same as any other employees: “I don’t see them as any different from anybody else.” Many professionals acknowledged that a person’s condition and their level of disability are factors in whether a person can perform well in a particular job. The wide spectrum of possible outcomes of a neurological condition from ‘no disability’ to ‘functionless unaided’ would then have an affect on a person’s ability to work and the impact they might have in a workplace: 14
  15. 15. “Employers are not meant to be altruistic, they have a business to run. Some seriously disabled people are unemployable or present unreasonable hazards to themselves and/or others in employment situations.” In some cases professionals thought people with neurological conditions had the potential to be better employees as they may have a sense of something to prove, and are possibly more likely to value the opportunity after many rejections and negative experiences. Several professionals also expressed concern that a wealth of skills and abilities would be lost if people with neurological conditions were not able to gain or retain employment. The neurological condition The majority of professionals interviewed said the person’s condition could be a barrier to employment. This could be due to not having control over the condition, the limitations the condition may impose or a result of personality changes such as aggression, brought on by some conditions. Again there was recognition of the difficulties faced if the condition was ‘invisible’: “Some problems are caused by the condition not being visible…. they can’t see your head spinning or the extreme tiredness that comes over you, in their view you look normal.” Attitudes Many professionals thought employers are unsupportive towards people with neurological conditions and have little understanding of individual conditions. Employers are possibly then less likely to employ someone because of their condition and the assumptions they make about what implications it would have on their business: “In this day and age people will not employ anybody they think might be a drain on their resources or profit.” 15
  16. 16. Other professionals expressed the belief that the employer’s lack of understanding about a person’s condition might mean they don’t provide the support someone needs: “The environments people work in and the people there could disable them more than the illness itself.” Lack of confidence As with the responses from people with neurological conditions, the majority of professionals thought lack of self confidence could be a barrier to employment: “Low self esteem is a barrier for anyone, combined with a neurological condition this makes an enormous impact.” There were a number of comments about society’s perception of disabled people – seeing the condition rather than the person - and the effect this could have on a person’s self-confidence. In addition, if people continually face the negative attitudes of employers and colleagues their self belief and confidence is gradually eroded: “The person with the condition may develop low self esteem because they stop believing in themselves, after this happens any small knock or tap can have a further negative effect upon them, taking them even lower.” Similarly to people with neurological conditions, the unpredictable nature of some conditions and how their employers may react to deterioration in performance or absences, was seen as a potential cause of loss of self- confidence. It some situations guilt and self-consciousness about not being able to support colleagues also creates low self esteem. Some professionals said that lack of self confidence meant people were less likely to ask for the help and support they needed, and thus they are trapped in a cycle where they lose more confidence as they struggle to continue without support: 16
  17. 17. “The nature of a person’s condition may make them feel more vulnerable about being independent as they may feel less self assured about asking for guidance and help” Lack of support Unlike people with neurological conditions, the professionals we spoke to focused on lack of support from employers as a barrier, rather than general ‘system’ issues and bureaucratic barriers. Amongst the problems cited by this group were lack of suitable transport and architectural or environment barriers which create inaccessible workplaces. One professional suggested that although employers may genuinely want to help, some adaptations and modifications may be financially or structurally impractical for them to provide. The system We sought the views of professionals about the issue of finance to people with neurological conditions who are working/receiving benefits. Many professionals said the benefits system has a negative impact on people. This is due to the complexity involved in some of the paperwork and negotiating the system to get what you are entitled to. Many professionals also said it could have an adverse effect on people looking for work and make them complacent. Some professionals thought there were disincentives to working when levels of benefits are above what a person could earn. A few professionals said people may look for low paid or part time work so their benefits are not affected but this would often restrict the type of work a person could pursue. One professional commented on the lack of creative options around this issue: “There’s no half way solution, they can’t dip their toe in employment and not lose all their benefits.” 17
  18. 18. There is a concern that people could return to work and lose their benefits and then be faced with a major deterioration in their condition. Regaining their benefits may be time consuming and difficult, with no guarantee they would have the same level again. There were some comments about the feelings people have about claiming benefits and a suggestion that some people may not make claims as a denial of their disability and the ‘stigma’ of accepting financial support. Employers said… Employers (although few in number) talked about their feelings about employing a person with a disability, how inadequately prepared they were and what would help them take steps to change the situation. All of the employers who responded to the questionnaires said they felt people with neurological conditions had the potential to be good employees. Employers at interview recognised that the right support and advice would be crucial in determining whether this would be the case. Some employers knew there was a vast difference in neurological conditions and the varying levels of disability they could present, and there was some creative thinking expressed as to the type of skills and experience a person with a neurological condition could offer a workplace. One employer presented an honest view of the difficulties employers may feel when an employees’ condition has deteriorated and their performance is affected. Knowing how to manage this situation without causing distress or offence would take a great deal of sensitivity and may deter employers from employing a disabled person in the first place. 18
  19. 19. The condition Some of the employers identified a person’s condition as a potential barrier to employment. There were some comments that the characteristics generally expected and valued within the workforce are sometimes impaired by a person’s condition and that in some cases attention span may be more limited that ‘non-neurologically impaired’ people. Attitudes Many of the employers considered the general ignorance in society about neurological conditions and disability is a barrier to employment for people with neurological conditions. One employer said she felt applicants may try to hide their condition from fear of what potential employers might think. Negative attitudes and a lack of understanding from both employers and colleagues about a person’s condition were seen as an issue by the majority of employers we spoke to, and a symptom of devaluing disabled people: “There may be an issue if they felt they weren’t being integrated or accepted as part of the organisation. I think it’s [negative attitudes] to do with the whole ethos of the organisation, if it’s [the organisation] valuing people then it shouldn’t occur.” One of the reasons given for why this may be happening was the fear of employers and colleagues about how to act and react: “The fear factor, the unknown – do we need to treat people differently, or do anything special? How do we treat people with neurological conditions? Do we even need to be aware of them? I think all of these can create barriers – a lack of knowledge and understanding from the employer.” Finally, some of the employers said that there is a general lack of creative thinking about the possibilities and problems of employing a disabled person, 19
  20. 20. particularly around the adjustments and adaptations they could make to a person’s job specification and/or working environment and practice. Lack of confidence This issue was not greatly discussed by many of the employers although a few employers thought an individual’s perception of their abilities and limitation would be a barrier. In particular, there was a feeling that some people were reluctant to take opportunities because they did not want to expose themselves to failure. Another view was that people need to adopt a ‘realistic attitude to their own capabilities’ rather than over-estimate what they can do and thereby set themselves up to fail and risk losing their job. Lack of Support Some of the employers we spoke to said it is not only the lack of support but a general reluctance by employers to provide support that is a barrier to people. This could be caused by the lack of funding opportunities available to adapt workplaces or an employer’s lack of knowledge about what funding is available. One of the employers raised the issue of health and safety but stated she felt it was not the guidelines themselves that are a barrier, but any individual’s interpretation of the rules and regulations to the disadvantage of disabled candidates. Discussion It is perhaps unsurprising that each of the groups we involved in the project shared concerns and issues about what the barriers to employment are for people with neurological conditions but it adds weight and value to the themes we have presented. However, it is apparent that each group holds a slightly different standpoint. 20
  21. 21. People with neurological conditions were by far the most negative about the limitations of having their condition, whereas both some professionals and some employers said they don’t see any difference between a person with a neurological condition being a good employee and anybody else. For people with neurological conditions, is this then a result of living with their condition or living with the disabling barriers they face in trying to work? For those without the experience it is difficult to understand how it feels to face prejudice on a daily basis. The combined frustration and weariness that develops from the constant battle to establish the optimum conditions for work without being too much of a ‘nuisance’ is powerfully communicated by the people who took part in this project. The non-financial rewards that work provides, self esteem, sense of purpose and of making a contribution, gradually eroded by the fight to get or keep a job. Unsurprisingly, professionals held a similar view – but quite unexpected was that employers involved were acutely aware of the impact their negative attitudes have on people. The comment that lack of self esteem is an issue for us all – and is only compounded by a neurological condition - was insightful to the fears we all have about how well we perform and what other people think of us. The unpredictable nature of many neurological conditions means this is an on- going reality for many people and their subsequent regrets about of lost skills and abilities after deterioration are impossible to imagine. In addition, confidence building is unlikely to happen when people face ignorance and lack of support. When questioned about what support is available to people in this area, professionals described a mixed and sparse picture, which seemed to rely on a person’s ability to seek out and demand help – something that is particularly difficult for those feeling low or disempowered. Potential sources are;  Rehabilitation services – although “not suitable for everyone” 21
  22. 22.  Social services  Counselling  Information and advice from volunteer organisations  Patient support groups Whilst one professional said the chances of a person accessing support around building self-esteem and confidence is “next to none”, another felt it was beyond the realms of his role to worry about: “I don’t have any dealings with support. They go out of the door and don’t exist.” Finally, the bureaucratic and system barriers people face seem to be a symptom of the attitudes people have about disability generally. The determining factor to people working, or accessing the right support within work, hinges on the individual employer/professional, and their interpretation of their role, and the rules and regulations that guide them. 22
  23. 23. Theme 2 – Things that make a difference People with neurological conditions said… Family and friends An overwhelming majority of people said the invaluable support of family and/ or friends helped them to cope with all the barriers they faced. This was through the knowledge that the supporters were on hand and were offering reassurances that they are loved, valued and respected for the things they can do. In some cases, more practical help was also provided. Some people said they had got jobs through contacts of their family or friends – a personal link had overcome the prejudice, fear and assumptions of an unknown employer. Other people said help with filling out applications forms and guiding through medical appointments came from family members. Self determination A spirit of self determination ran through many of the stories we heard, people overcoming difficult situations through shear self-belief: “What helps me through? My own gumption. My own will not to let it defeat me.” Feelings of wanting to prove abilities and continuing to fight for things through personal motivation were common. Many people had channelled their energy into self-development. Some had joined college courses learning new skills or had attended confidence building courses. People said concentrating on achievements through hobbies eased 23
  24. 24. the frustration and gave them a sense of self-worth. A number of people had opted to work as volunteers saying it gave them a way of working which had less stress attached to it, offered easily adaptable workloads, had no implications to their benefits and enabled them to make a valued contribution. Understanding and supportive employers By far the most crucial factor that determined good or bad work experiences was the support and understanding (or lack of it) from employers and colleagues. Only a few people had good experiences to share, and described situations where their job has been tailored to them, or was adapted after they were diagnosed with their condition: “I now have a job I can do at my own pace, in my own time.” Only a minority of people involved in the project had actual examples of having their job specifications modified, adaptations to their workspaces, flexible working hours and flexible working practices. Good relationships with line managers were particularly important in these scenarios and their encouragement and support was immensely valued: “My boss now, he’s great – he tells me what to do and shows me how to do it. If I need it he’ll show me again. He’s a fantastic boss.” An important aspect of this support for one person interviewed was the reassurance that she could be open and frank about her condition. She feels she can admit to her manager when she is feeling low rather than struggling to cope. Finally, many people said colleagues can provide tremendous support: “They didn’t see me as the weakest link. It would have been easy to resent me but they didn’t.” 24
  25. 25. The Glaxo Neurological Centre A source of support and advice for nearly all the people interviewed was The Glaxo Neurological Centre in Liverpool. This houses a number of support groups for various neurological conditions and projects. Many people mentioned The Working Life Project specifically for the advice and support it had given them about employment issues. People also said it gave them a chance to meet other people in similar situations, access to self-development courses and counselling services. Professionals said… Family and friends Most of the professionals said families were ‘key’ in the support of a relative with a neurological condition. However, as much as this could be positive there were several concerns expressed about the potentially negative influence a family could have: “The role of the family is key. The downside might be that they are over- protective, presenting the patient with additional barriers to overcome.” “Families provide key support when it is good. But well meaning or mistaken support, like wrapping people up in cotton wool is equally counterproductive.” Many professionals said they felt families were naturally very worried and therefore tended to overprotect or ‘smother’ their relatives, limiting what the person could then do. Many professionals said this could be avoided if families were given ‘specialist’ training and education about their relative’s condition and how they could become effective enablers. They should be 25
  26. 26. encouraged to “let them show their capabilities” and informed about the ways they can be part of supporting change for disabled people. A few professionals shared concerns about the impact a neurological condition can have on family life and the role a primary carer adopts. It was felt by one person that if the carer becomes dependent either financially or emotionally on that role – drawing their own self-esteem from the situation, they can be reluctant for their relative to become more independent. Self determination Little was said by professionals on the importance of a person’s self- determination in overcoming barriers. A few people commented that some people, ‘battle on regardless’ of the barriers they face and, whilst some people are happy to give in to their condition, “others are all the more determined to prove that they can do the job.” One professional said she felt having a positive self image and sense of worth helped people in employment. Understanding and supportive employers Professionals were in agreement with people with neurological conditions about how critical understanding and supportive employers are to removing barriers to employment. Many professionals talked of the power employers have to reassure their employees and ease their self doubt: “People need sympathetic understanding related to their disability and to feel that they are still worthwhile employees.” There were a number of comments about the need to raise awareness of neurological conditions amongst employers and colleagues and the public in general. Some professionals said educating employers about how to support an employee with a neurological condition could prevent people losing their jobs: 26
  27. 27. “Educating employers whilst a diagnosis was being made would help.” A few people suggested the difficulties may be in knowing where to go for that help and support: “If you don’t know what you’re looking for you don’t know where to go.” Again, as with people with neurological conditions, some professionals said a trusting and supportive relationship between employer and employee was essential for an honest disclosure of the problems a person may be facing, and a ‘frank discussion’ about what support is needed. Accessible jobs and workplaces Amongst the comments about supportive and understanding employers, many professionals listed practical changes employers could offer that would help people. These included;  Sensory adaptations like large print  Adaptations to transport facilities, car parking  Flexible hours  Working from home  Rest breaks  Different seating  Job modification  Access to buildings/toilets etc  Employers support for health and safety issues One professional had a radical suggestion that employers should make these changes anyway, thereby being truly inclusive and welcoming to all prospective employees. 27
  28. 28. “Rather than making special changes to accommodate a disabled person, these could already be in place as a matter of course.” Employers said… Understanding and supportive employers All the employers we spoke to said people needed the right support within their workplace. Some of the employers gave creative and sensitive examples of how they had supported previous employees. There were many comments about the importance of tailoring support to people’s individual needs: “Job specifications need to be modified to accommodate individuals with limitations. Applicants need support specific to their needs.” A few of the employers said honesty was important and one employer raised an interesting perspective on this saying honesty was required from the employer in “defining what the job demands and assessing the person’s level of performance.” Colleagues were seen by some employers to be a good source of support, however, as articulated by people with neurological conditions, it is important that this is well managed to prevent colleagues becoming resentful: “Colleagues must not feel they have to ‘carry’ a disabled person, which could lead to resentment and lack of co-operation. There needs to be preparation and education of the entire workforce to ease a new disabled employee into the workplace.” One employer spoke openly about the need for employers to be supportive to their employee in addressing any health and safety issues. However, rather 28
  29. 29. than this process becoming one of the bureaucratic barriers people face, she offered an insightful view on how this could be done: “There’s room to work within the processes that are available. It’s about knowing the parameters we can work within – sometimes we’re quite limited in our thinking though.” Accessible jobs and workplaces Finally, as with professionals some employers commented on practical steps that they could take to minimise barriers for people with neurological conditions such as “adopting flexible working practices” and providing a “physical environment conducive to the individual”. One employer recognised that this is not necessarily a one-off task, but should remain on their managerial agenda: “Employers need to frequently review their employment situation in their company to ensure that the adequate support is provided for disabled employees.” Discussion Quite naturally family and friends provide immense personal support to people with neurological conditions. The different perspectives given by professionals highlight the sometimes complex, and not always positive forms this can take. However, in the absence of easy to access, resource-full, struggle-free alternative support, families and friends continue to be vital – practically, and more importantly, emotionally. It seems that both professionals and employers seem to have a good grasp on the factors that help people overcome barriers to employment but we shall discuss the difficulties they may have in accessing and therefore providing this support in the next section. The importance of raising awareness and 29
  30. 30. educating employers came through from both of these groups. However, it would be important to consider ‘how’ this is done – despite the potential positive effects some people might feel uncomfortable being made an ‘example’ within their workplace. The most common experience from people with neurological conditions was a negative experience within employment. It seems therefore that enlightened employers are rare. If this is the case, the call from professionals and employers for people to be honest about their conditions is a difficult request to fulfil. If you have previously lost your job or faced continual struggles because you were honest, is it not tempting to hide or ‘play down’ your condition next time? Lastly, some people shared good experiences where they had found fantastically supportive employers. These stories came from people with different neurological conditions, different levels of disability and different predictability of their conditions – which despite all the potential barriers, shows it can be done! 30
  31. 31. Theme 3 – Current available support People with neurological conditions said… About professionals that provide support The group of professionals identified by most people with neurological conditions as the most helpful were health professionals: “All the ones I’ve seen have been really great. I’ve felt really at ease with them.” Some named particular consultants or specialist nurses who had provided very good advice, information and support. One person named the Brain Injury Rehabilitation Centre at Rathbone Hospital as invaluable to her: “they were really good people, everyone there were angels as far as I was concerned.” Many comments were made about the support of General Practitioners. Most of these were positive although a few people said their doctor either didn’t understand the support they needed or they had difficulty getting to see the same doctor twice: “My Doctor has been fantastic – he knows who I need to contact.” Many people said The Glaxo Neurological Centre and The Working Life Project were the most helpful professionals they had met, and some people 31
  32. 32. said the professionals at Network Employment, a supported employment agency, had helped them. Some people said they had very unhelpful and unconstructive contact with professionals providing support. In particular, although a few people said they had some useful and helpful contact with a Disability Employment Adviser, the majority complained of the lack of support they had received from DEAs and the Employment Service: “I’ve tried employment advisers but I’ve never had any luck out of them. I thought I’d try and sort it out myself.” “The disability officer at the job centre was more eager to brush me off the books than help me get a job. I need help but I don’t know where to turn to get it.” “Certain individuals within the employment service have been less than helpful.” Some people said that individual Occupational Therapists and Physiotherapists had been unhelpful. A few people had been disappointed by the lack of help from their consultant, General Practitioner or social worker. Professionals said… About professionals that provide support Many professionals of various disciplines said that health professionals did not have the time, resources or scope in their role to provide this sort of support. There were some comments about doctors in particular: “Doctors can be inconsiderate and impersonal.” 32
  33. 33. One person said doctors can have an impact on a person’s self-esteem or confidence as they are not concerned with the “whole” person, but the condition they treat. A few people thought doctors could be over-protective and encourage patients to remain out of work by presenting the ‘right’ reports (those that present the disabled person as unable to work) or repeating sick notes indiscriminately. Some people thought other health professionals such as nursing staff and therapists were unhelpful if they haven’t got a good understanding of the neurological condition. A few people said the attitudes and beliefs of health professionals about a person’s condition could have a powerful effect on discouraging a person from seeking a return to employment – and raises concerns about the difference knowledge and education makes: “If they [health professionals] act in this way, what must the behaviour of the members of the public be like?” However, some professionals cited complementary therapists who provide “more positive reinforcement” and specialist nurses who “show there is life after diagnosis” as helpful health professionals. Most professionals knew of The Glaxo Neurological Centre and some mentioned the project worker for The Working Life Project as a valuable source of support: “He’s taken away the anxiety about work with people individually. He gets to know their circumstances and expectations.” A few professionals said DEAs or the Job Centres were not providing a useful service to people with neurological conditions and equally, human resources staff within organisations that “don’t fully understand the condition an individual may have”. 33
  34. 34. One person saw past the varied labels and roles professionals may have as being the key factor in whether they were helpful or not, and suggested it is down to each individual’s personality and qualities. Helpful professionals are those: “people with ‘people’ or communication skills of whatever profession.” Finally, one professional suggested politicians were responsible for the lack of support people experienced: “Who’s least helpful? No one professional group stands out – politicians maybe, yeah politicians, thinking about it.” Support available Professionals also commented on their own lack of knowledge of support services for people with neurological conditions around employment issues. The majority of professionals said there was little available support and many gave examples of people they knew that had experienced immense difficulty trying to get support. An important observation was that not only was support lacking, but the little there is seems to be managed in a dysfunctional way: “There is limited help and a lack of anyone co-ordinating the help.” Some professionals said the law provided a structure to the support people are entitled to, particularly the Disability Discrimination Act. But rather than this acting to protect people’s right’s, there was a feeling that this could be manipulated by individual employers to suit themselves: “the legislation on paper appears very supportive but in practice the individual employer or line manager is key and can get away with prejudicial conduct in spite of the legal framework.” A few professionals said employers ignored their responsibilities to employ disabled people or filled their ‘quota’ with the ‘least disabled’. One 34
  35. 35. professional commented that if people experienced discrimination this is both difficult and costly to redress. Professionals did list a number of sources of support available to people including:  College programmes that prepare people to go back to work  Access to Work – “to purchase equipment”  Support groups  DEAs  Occupational Health Officers However, there were many comments about how difficult it is for people to find out what is available to them and how they can access it. Employers said… Support available The majority of employers said there was little or nothing in the way of support for people with neurological conditions in employment, and a few said there may be support but they had no knowledge of it. There was concern that information “doesn’t seem to be getting through” to employers. One employer was able to list a number of sources she felt offered support to people which included Network Employment, DEAs and the Job Centres. Having taken the initiative and linked herself with an independent consultant to advise the organisation on disability equality issues, she had discovered a wealth of contacts: “There is a whole mechanism there to support you if you express interest, but I’m not sure if it’s strong enough if you’re not expressing interest yourself.” 35
  36. 36. However, there is the feeling shared by professionals, that this lacks co- ordination and clarity making it hard to access the right information: “with so many agencies it’s hard to pick your way through. ” Most of the employers we spoke to commented on the general lack of support they felt in issues relating to employing disabled people. Some suggested that there should be more low effort information readily available, for everyone involved - a “‘how to’ for employers, colleagues, people themselves.” Some employers were aware of the implications of government legislation about employing disabled people in their organisation, and felt it had a regulatory effect on employers’ behaviour. There was concern though that this alone does not mean employers’ are genuinely changing their practice. It was questioned whether legislation only encourages employers to: “Create situations where the appropriate box is ticked without real commitment to providing meaningful employment and support.” One employer who works for a large organisation shared developments they were making towards offering greater support to disabled applicants. This involves offering pre-employment counselling and training, guaranteed interviews for disabled applicants where their needs can be evaluated and support for these considered, and drop-in centres for applicants to meet their employed peers and share experiences. However, it was acknowledged that this would only operate in ‘specialist’ areas of the organisation and would not be widely available. Finally, one employer felt that despite the intention to look for external resources and strategies that could provide support to people, the most significant type of support possible is the day to day ad hoc support that a line manager and colleagues can give. 36
  37. 37. Discussion The type and nature of support available to people is patchy and seems to rely heavily on the personality, character and personal belief of the individual behind the service. There are some disturbing stories of the negative interactions people are having with professionals who are paid to provide support, but mostly this related to individuals rather than whole services. The one aspect of support that does not seem to be working is the employment service and Disability Employment Advisers. In some cases, the contact people had with this service had put them off looking for work at all. Whether it is the way this support is offered or what it involves it is clear that further investigation involving the employment service would be interesting. A significantly positive aspect of support to people on Merseyside is The Glaxo Neurological Centre including The Working Life Project. The services provided include practical support, information and advice, and when required, an emotionally reassuring presence for neurological patients, their carers and families. How this type of support - getting to know affected people’s individual situations and tailoring useful and constructive support - could be extended to other parts of the country, is a matter demanding serious consideration. A repeated theme across the groups is the lack of co-ordination of support available. The systems for informing on what’s out there and how to access it are not working for people with neurological conditions and employers alike. It is debatable which of the existing professionals and statutory bodies, should or could lead this process. Maybe consideration should be given to developing a new and independent role? From the current comments from health professionals, there is no clarity over where the health or medical related support ends and the social/emotional support begins. This is likely to remain a blurred issue. However, one 37
  38. 38. professional gave an interesting perspective on the evolution of ‘health’ support: “After, ‘am I going to die?’, ‘can you cure it?’, ‘work’ is the third issue people bring up when given a diagnosis of a serious neurological condition. There’s lots around educating people with neurological conditions about their condition, but we should change the emphasis and realise people want to know about life planning and quality of life issues.” Finally, there is a shared concern about the effectiveness and impact of legislation in protecting the rights of disabled people and promoting work opportunities. The comment regarding the ‘unhelpfulness’ of politicians acknowledges the influences that will continue to effect the wider picture. 38
  39. 39. Section 4 - Conclusions and Recommendations The workshops… Our aim for the first workshop was to present back the research findings to the group and gain clarification about key themes. We gave the group information from the questionnaires and interview stages and prompted discussions between people about their shared/varied experiences. The workshop produced a list of statements about barriers to employment that were agreed by the group. These are shown below.  The lack of accurate knowledge about disability generally and/or particular conditions leads to difficulties in the workplace. Employers tend to make assumptions about the implications of a condition with very few facts.  Experiences with employers and professionals can vary according to the individuals you meet and their personal attitudes and beliefs  A person’s condition itself could be a barrier. This is helped by other people’s knowledge and understanding and having appropriate support to manage difficulties, e.g. planning ahead, memory difficulties etc.  Being labelled doesn’t help.  There is a general unwillingness by employers to explore, understand and find out about a condition. 39
  40. 40.  Finances/benefits are often a disincentive to working.  Bureaucracy/systems/structures within the workplace are another barrier – but this can depend on the person you are faced with and their interpretation of the ‘rules’.  It takes an incredible amount of time to sort problems out and get through the ’red tape’.  There have been many negative experiences with Disability Employment Advisers who often are very unhelpful and have little specialist knowledge and little time to listen.  Support from health professionals, colleagues and voluntary organisations can really boost confidence Without knowing the detailed results of the previous stages, the first focus group reiterated many of the issues and concerns reflected throughout the research. The second workshop focused on the future – how can we overcome the barriers that clearly exist for people. The brief was to imagine and create the seeds of ideas which could translate into pilot projects. Whilst it was difficult for everyone involved to feel positive – particularly participants who are currently struggling to resolve situations of discrimination – the group developed many interesting ideas and suggestions. Some of these are explained below.  To produce an information resource for employers and Human Resources managers – covering neurological conditions, current regulations on employing people with disabilities, support available, penalties for non-compliance, case studies of successfully employed disabled people.  To develop a programme of retraining for health and safety officers and other professionals involved in interpreting rules and regulation around disability awareness.  To produce an information resource for people with long term neurological conditions and people who are newly diagnosed. 40
  41. 41.  To produce ‘real life’ fact sheets – with constructive but honest perspectives about employment written by and for people with neurological conditions.  To develop and run awareness sessions for employers about neurological conditions.  To create and run a ‘mentorship’ project - developing workplace mentors who are ‘in-house’, objective sources of support. Out of work – to set up a database that can be a resource of ‘buddies/mentors’ of other people who are going through similar situations. Reflections on the research This research project has explored barriers to employment and the issues surrounding them for people with neurological conditions from the perspectives of people with neurological conditions themselves, professionals and employers. We acknowledge that this project is limited geographically as it is confined to the Merseyside area and involved people with neurological conditions known to 2 projects and professionals connected to one major specialist health support provider. We have not therefore gained perspectives from people with neurological conditions who did not need or want (or know about) either of these projects. This may be significant in that there may be many people either successfully supported in employment or who have given up hopes of working that have never needed the support of these types of projects. In addition, we have a limited professional representation. The low response by employers was expected, partly because of the other demands and time pressures employers have and partly because of their concerns about what the project may involve. This too will affect our results as negative and unsupportive professionals are unlikely to respond to a project which may reveal their discrimination. The employers that were involved in this project however, were open, honest and able to give a frank 41
  42. 42. view of the difficulties they face. However, whilst we have reported back what the small number of employers said, it is too small a group to generalise our findings to other employers. Despite the limitations, this project represents an ambitious and exciting first step into considering the issues around employment for people with neurological conditions. It has shown that the barriers are real and complex. The reality of coping with a neurological condition and managing the effects this may have on everyday life is a mountain to climb in itself. Having then to deal with exclusion from working life or having continual battles to fight in your workplace is harmful and unfair. We take an incredible amount from our jobs besides money – self-worth, relationships, sense of achievement. The feelings and emotions expressed by the people who took part in this project illustrated the frustration of being denied these opportunities and the ripple effect this can have on the rest of your life. Within the current support systems for people with neurological conditions and employment there are undoubtedly incredibly passionate, inspired, hard working individuals. But there is clearly a missing link, or gaping hole, in the way support is arranged and failure in the way it has developed. Whilst this project has merely touched the surface of these issues, it has exposed deeply felt confusions and frustrations. Perhaps most importantly it has allowed the people most involved a voice to ask the questions that need to be answered. The perceived and experienced barriers to employment are identified and issues around why these exist are raised. Potential avenues for future development and investigation include:  Evaluation of the pilot project ideas with a view to selecting a small number to develop, review and implement 42
  43. 43.  A wider ranging investigation of barriers to employment focusing on the views of professionals within the employment service, social services and voluntary organisations  Imagining and developing alternative ways of seeking out the views of employers in a non-threatening way  Focusing future investigation on human resource professionals and health and safety professionals and the guidelines that govern their roles And some of the issues waiting to be explored are:  What is the definitive picture of the support options currently available to people, how do they access them and what are the most effective ways of communicating this information and any changes that may occur?  What are the barriers for employers in accessing information and support?  How can the support services work in partnership more effectively with people with neurological conditions?  How can professionals and employers connect and offer joint support to people with neurological conditions?  What are the implications for the training and development of professionals in all areas?  What are the most effect means of raising awareness and educating employers, colleagues and society in general? 43
  44. 44.  Is there a need for a new professional role – co-ordinating access to advice, support, information and representation for disabled people facing barriers to employment? References 44
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