Longitudinal study of Personal Budgets for AdultSocial Care in Essex Final reportSeptember 2012OPM252B Gray’s Inn RoadLond...
Impact of Personal Budgets for Adult Social Care in EssexClient                  Essex County CouncilDocument title       ...
Impact of Personal Budgets for Adult Social Care in EssexForewordThe publication of this report represents the culmination...
Impact of Personal Budgets for Adult Social Care in EssexThe future, as the recently published White Paper “Caring for Our...
Impact of Personal Budgets for Adult Social Care in EssexContentsForeword....................................................
Impact of Personal Budgets for Adult Social Care in EssexExecutive SummaryIntroductionOPM and ecdp (formerly Essex Coaliti...
Impact of Personal Budgets for Adult Social Care in Essex    personal hygiene and nutrition, visits to day centres a few t...
Impact of Personal Budgets for Adult Social Care in Essex    service users have become more confident with regards to exer...
Impact of Personal Budgets for Adult Social Care in Essex    how they spent their Personal Budgets from what was specified...
Impact of Personal Budgets for Adult Social Care in Essex    number of cases service users also use their own financial re...
Impact of Personal Budgets for Adult Social Care in Essex•   A third of service users recognised having a contingency buil...
Impact of Personal Budgets for Adult Social Care in Essex•   There was a view amongst several providers that after an init...
Impact of Personal Budgets for Adult Social Care in Essex    outcomes, rather than narrow or prescriptive inputs and outpu...
Impact of Personal Budgets for Adult Social Care in Essex    that the VCS could be a provider for their Personal Budgets, ...
Impact of Personal Budgets for Adult Social Care in Essex1. IntroductionOPM and ecdp (formerly Essex Coalition of Disabled...
Impact of Personal Budgets for Adult Social Care in EssexAs in round two of this study, we will throughout this report, an...
Impact of Personal Budgets for Adult Social Care in Essex       Round 1                         Round 2                   ...
Impact of Personal Budgets for Adult Social Care in Essexapproximately the same time as the rest of the sample, that is, b...
Impact of Personal Budgets for Adult Social Care in EssexIn order to capture the impact of Personal Budgets on service pro...
Impact of Personal Budgets for Adult Social Care in Essex       the impact of Personal Budgets on service users and their ...
Impact of Personal Budgets for Adult Social Care in Essex2. Key findings to dateThe first round of research was conducted ...
Impact of Personal Budgets for Adult Social Care in Essex•   Service users and their families underlined the importance of...
Impact of Personal Budgets for Adult Social Care in Essex3. How Personal Budgets are being spentIn this section we provide...
Impact of Personal Budgets for Adult Social Care in Essexrisen since last year. However, this does not reflect a change in...
Impact of Personal Budgets for Adult Social Care in EssexA number of service users with learning disabilities or physical ...
Impact of Personal Budgets for Adult Social Care in Essexcompared to round 2 of the research, although there has been some...
Impact of Personal Budgets for Adult Social Care in EssexService users as direct employersOnly two service users were dire...
Impact of Personal Budgets for Adult Social Care in Essexhas scaled back on PA support. In fact, the latter is considering...
Impact of Personal Budgets for Adult Social Care in Essexwas unable to leave the house that day. Another service user with...
Impact of Personal Budgets for Adult Social Care in Essex4. Impact of Personal Budgets on service users   and familiesOne ...
Impact of Personal Budgets for Adult Social Care in EssexFor a number of service users, having increased choice specifical...
Impact of Personal Budgets for Adult Social Care in EssexAccess to consistent, flexible or personalised careAs in round tw...
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
Impact of Personal Budgets in Adult Social - final report
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Impact of Personal Budgets in Adult Social - final report

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In 2008, Essex County Council (ECC) commissioned ecdp and OPM to follow people over 3 years as they use cash payments for adult social care within Essex.

This study provides a unique opportunity to fully understand the experiences of people living with a personal budget over this time - a perspective that is often overlooked.

This is the full report that contains findings from the third and final round of research with service users, frontline practitioners and providers in Essex who are working to facilitate self-directed support across the county.

You can read 5 other associated briefing papers and 3 videos that provide the lived experience of users over the last 3 years on ecdp's website: www.ecdp.org.uk.

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Transcript of "Impact of Personal Budgets in Adult Social - final report"

  1. 1. Longitudinal study of Personal Budgets for AdultSocial Care in Essex Final reportSeptember 2012OPM252B Gray’s Inn RoadLondon WC1X 8XGtel: 0845 055 3900fax: 0845 055 1700email: info@opm.co.ukweb: www.opm.co.uk
  2. 2. Impact of Personal Budgets for Adult Social Care in EssexClient Essex County CouncilDocument title Longitudinal study of Personal Budgets for Adult Social Care in Essex – Round three final reportDate modified 17 August 2012Status FinalClassification For publicationOPM project code 7078Author Sanah Sheikh, Tim Vanson, Natasha Comber from OPM and Rich Watts from ecdpQuality assurance by Dr Chih Hoong SinContact detailsMain point of contact Sanah SheikhTelephone 020 7239 7803Email ssheikh@opm.co.ukIf you would like a large text version of this document, please contact us.
  3. 3. Impact of Personal Budgets for Adult Social Care in EssexForewordThe publication of this report represents the culmination of our 3-year journey in researchingthe impact of Personal Budgets for service users in Essex. As this is the final report, we aretaking this opportunity to share some thoughts as the people responsible for leading thisunique piece of work over the last 3 years.Since the launch of personalisation in 2007, the entire landscape of social care hascontinued its dramatic transformation. Despite a background of austerity we have continuedthe drive to offer the benefits of personalisation through the mechanism of a PersonalBudget.This report captures the learning from our journey and clearly shows the benefitspersonalisation brings. But it also confirms what we always knew to be the case: that there isalways more to do. It also clearly shows that it is not simply the role of local authorities andtheir staff to do more: there are factors that are in the control of users themselves and theirlocal communities that can be drawn upon and used more for the benefit of everyone.Three things stand out for us over the course of this study.• Service users are experiencing a greater number of positive outcomes after two years on their Personal Budget. These outcomes include an improved quality of care, living a fuller life, increased independence and dignity, increased confidence and improved physical health.• There is very strong support amongst practitioners for Personal Budgets. They recognised that Personal Budgets allowed service users to exercise choice and control over the care they receive. They have also seen from experience over time that Personal Budgets, particularly when used creatively, can effectively promote independence and improve service users’ confidence.• Providers have been consistently positive about the introduction of Personal Budgets. Many are able to point examples of where the use of Personal Budgets is leading to positive outcomes and an improved quality of life for service users. Furthermore, they felt that Personal Budgets are allowing service users to enter into a relationship with providers that are more direct and empowering, and providers are willing to develop new services and tailor existing ones to respond to this shift. These are each incredibly encouraging signs. Taken together, all three components – service users, local authorities and their staff, and providers – can and will need to continue to work together to ensure personalisation is successful.Inevitably, in a system change of this scale and type, we haven’t got everything right. Butwe’ve continually learnt as we’ve gone along, and actively encouraged this learning practice,and remained committed to continuous improvement. Commissioning this work at the start ofour personalisation journey was a clear statement of this approach, and learning points thathave been raised in this latest round of research (conducted at the end of 2011) have beenacted upon. OPM page i
  4. 4. Impact of Personal Budgets for Adult Social Care in EssexThe future, as the recently published White Paper “Caring for Our Future” makes clear, isone in which personalisation is embedded in the core of everything we do. It is also one thatrecognises Personal Budgets are one mechanism of many for achieving a personalisedsystem, and not just an end in itself.Our commitment to personalisation and different ways of delivering public services can beseen through our work as a Community Budgets pilot and Right to Control Trailblazer. It isalso exemplified through the relationship between Essex County Council and ecdp, whichsymbolizes the importance of the service user perspective in social care in Essex.We would like to thank Jenny Owen, who in her role as Executive Director of Adults,Community, Health & Wellbeing commissioned this work in 2007. We would also like tothank the project teams at OPM, ecdp and Essex County Council for their work over the las3years. Though many have contributed, we would particularly like to thank the ProjectManagers at OPM – Sally Neville, Sarah Holloway and Sanah Sheikh – and Vicky James atECC.Of course, this study would have been nothing without the time and generosity of the peoplewhose experiences we tracked. We hope their experience of being part of this research hasbeen as beneficial to them as learning from their experiences has been for us and, we hope,others on their own journey towards personalisation.Liz ChidgeyExecutive Director Adult Social Care, Essex County CouncilMike AdamsChief Executive, ecdp OPM page ii
  5. 5. Impact of Personal Budgets for Adult Social Care in EssexContentsForeword.................................................................................................................................. iContents................................................................................................................................. iiiExecutive Summary................................................................................................................ 11. Introduction....................................................................................................................... 102. Key findings to date........................................................................................................... 163. How Personal Budgets are being spent............................................................................183.1 Range of services purchased with Personal Budgets......................................................183.2 Range of providers employed..........................................................................................203.3 Change in services purchased and providers employed.................................................224. Impact of Personal Budgets on service users and families................................................254.1 Positive impact................................................................................................................ 254.2 Adverse impact............................................................................................................... 335. Explaining the impact on service users and their families..................................................375.1 Personal resources......................................................................................................... 375.2 External factors............................................................................................................... 436. Practitioners’ reflections on Personal Budgets..................................................................506.1 Extent of practitioner support for Personal Budgets........................................................506.2 Impact of Personal Budgets on practitioners’ role and function.......................................526.3 Practitioner reflections on ECC systems and processes.................................................547. Service providers’ reflections on Personal Budgets...........................................................577.1 Extent of provider support for Personal Budgets.............................................................577.2 Impact of Personal Budgets on social care providers......................................................597.3 Success factors and challenges for Personal Budgets....................................................638. Summary and conclusions................................................................................................669 Recommendations............................................................................................................. 73Appendix 1: Service providers interviewed............................................................................80 OPM page iii
  6. 6. Impact of Personal Budgets for Adult Social Care in EssexExecutive SummaryIntroductionOPM and ecdp (formerly Essex Coalition of Disabled People) were commissioned by EssexCounty Council (ECC) in October 2008, at the time of introducing Personal Budgets for adultsocial care, to conduct a three-year, longitudinal study into the system of Personal Budgets.The study aimed to: 1. Capture the impact of self-managed Personal Budgets on the lives of people who use them, including evidence of how and why impact is being achieved over time; 2. Assess the effectiveness of practices and processes being used by ECC and its partners to support the delivery of Personal Budgets, including evidence of how the market is evolving over the study period.This report contains findings from the third round of primary research and data collection.The study has worked with older service users, people with learning disabilities (LD) andpeople with physical and/or sensory impairments (PSI) in order to understand a diverserange of lived experiences and the extent of challenges and successes within specificservice user groups. The number of service users and/or relatives interviewed in round onewas 46, and this number decreased to 261 in round two and to 202 in round 3. We thereforedecided to undertake additional recruitment in order to boost sample size to at least that ofround 2 which resulted in the recruitment of an additional 9 participants, bringing the totalnumber of participants to 29.As well as talking to service users to understand the suitability of practices, processes andthe local provider market, this study also involved interviews with 17 local service providersfrom both the private and the voluntary and community sector, and a focus group with 7front-line practitioners to understand their perceptions of the overall system of delivery ofPersonal Budgets for social care.Key findings from interviews with service users and their familiesHow Personal Budgets are being spent• Although service users are most likely to be spending their Personal Budgets on purchasing traditional social care services, there are also a large number of service users purchasing leisure, personal development and domestic help services.• Older service users continue to be most likely to spend the majority of their Personal Budgets on purchasing traditional social care services. The social care services purchased by service users include personal care to help with daily tasks such as1 Of the 20 participants we were unable to interview in round 2, 7 had died, 4 were not contactable at theirtelephone number or address, 3 had moved into residential care, 3 no longer wished to take part in the study, 2had moved out of the area and 1 was no longer receiving a Personal Budget.2 Of the 6 participants we were unable to interview in round 3, 2 were not contactable at their telephone numberor address, 1 had died, 1 was feeling too unwell to participate and 2 no longer wished to take part in the study.Although it would have been useful to understand the experiences of the service users who no longer received aPersonal Budget, the nature of the participant permission given for this study prohibited OPM from contactingindividuals again. OPM page 1
  7. 7. Impact of Personal Budgets for Adult Social Care in Essex personal hygiene and nutrition, visits to day centres a few times a week and respite services in order to give family members the opportunity to take a break or go on holiday.• A number of service users with learning disabilities or physical or sensory impairments are also spending their Personal Budget on purchasing services focused on leisure activities such as swimming and bowling or employing PA services to support broader wellbeing and promote independence.• Some service users are also using the Personal Budget to support the care they receive, through the purchase of equipment or access to transport. On the other hand few are spending their Personal Budget on health services.• There are key differences in the types of service providers being contracted by the different impairment and age groups of service users. In general, older service users are least likely to be employing freelance individuals, and more specifically, family or friends to provide services.• There has been some increase in the number of service users with learning disabilities that are contracting PA support from freelance individuals. Moreover, only service users with learning disabilities are directly employing staff.• There is very limited evidence of service users contracting VCS organisations to provide care and support. It is also interesting to note that service users do not tend to differentiate between private and voluntary sector providers.• Very few service users spontaneously mention issues of risk in the context of Personal Budgets. Instead, their focus is on being able to choose high quality providers or receiving services from an individual that they have a trusting relationship with.• Approximately one third of service users have changed the services they have been purchasing over the last year. This change is a result of a deterioration or improvement in health for some and for others it is a result of revised Personal Budgets being approved after reviews.• A little less than a third of service users have changed the providers that they employ to deliver services over the last year. Additionally, service users with learning disabilities and older service users were much more likely to have changed providers compared to service users with physical or sensory impairments, usually as a result of being unhappy with the quality of care provided.• Participants generally tend to feel that they would not need to tell the council if they decided to change the providers they are using. However, there are mixed views about whether service users would need to tell the council about making changes to the services they are purchasing.Positive impact of Personal Budgets on service users and their families• Service users and their relatives have been able to exercise increased choice and control over the providers they employ to provide their care. For a number of service users, this means they are able to employ a family member, friend or other individual with who the service user has a personal and trusting relationship. This was felt to be important because such as an individual would have a better understanding of the service user’s needs and therefore be able to provide a better quality of care. For other service users increased choice means being able to change providers if they are not happy with the quality of care being delivered. For some service users, increased choice also means being able to get consistent, personalised and flexible care. In general, OPM page 2
  8. 8. Impact of Personal Budgets for Adult Social Care in Essex service users have become more confident with regards to exercising choice and control over providers over the last few years.• Personal Budgets have acted as a platform for service users to pursue interests of their own, and gain greater personal fulfilment. Service users had purchased leisure activities and opportunities for personal development which enabled them to live fuller and what they often described as more ‘normal’ lives.• For many service users the Personal Budget provided the opportunity for them to get out of the house and interact and socialise with other people. They recognised that without Personal Budgets, they may well have been constrained and isolated to their houses. For others, Personal Budgets have enabled them to be able to go out and participate in activities they enjoy. This was particularly the case amongst PSI or LD service users.• Many service users and their family members also felt that services purchased through the Personal Budgets enabled a greater sense of independence. This was an outcome most likely for service users with physical or sensory impairments. Increased independence often arose through employing a personal assistant to accompany a service user on leisure activities or to run daily errands which meant that they do not have to rely on their families for these tasks.• For a number of service users being able to access care, particularly personal care, from individuals other than family results in an important sense of dignity and respect. This was particularly the case for some older service users who before being able to access Personal Budgets had been reliant on family members for personal care.• For some service users, particularly those with physical or sensory impairments or learning disabilities, increased confidence and self esteem came about through using the Personal Budget to participate in activities that included opportunities for interaction with others and being able to try new things.• A number of service users with physical or sensory impairments, as well as older people, also described how being able to self manage Personal Budgets and deal with providers directly had given them a sense of empowerment and increased self-esteem.• For a number of service users, the activities and care purchased through Personal Budgets has had a substantial impact on physical health and well being. This outcome was particularly evidenced amongst PSI service users. According to service users, the impact of Personal Budgets on improving physical health is facilitated by the freedom and flexibility to purchase services which meet the needs of service users and which therefore can have a substantial impact on physical health needs.• For many family members the care and support purchased through Personal Budgets has enabled them to live fuller lives, for example by allowing them to participate in leisure activities, socialise with friends or run errands. It also enabled many to be able to plan for holidays.• A number of service users’ family members also talked about the ‘peace of mind’ that came with being able to be on a Personal Budget. This related both to financial peace of mind and knowing that their relatives are receiving high quality care.Adverse impact of Personal Budgets on service users and their families• Someservice users and relatives expressed uncertainty and a lack of clarity about how Personal Budgets could be used. This included uncertainty related to not knowing about the types of providers that could be employed to provide services, how much flexibility in OPM page 3
  9. 9. Impact of Personal Budgets for Adult Social Care in Essex how they spent their Personal Budgets from what was specified in their original support plan, and uncertainty about what to do with any surplus built up in their Personal Budget accounts.• Service users reported stress associated with the extra financial burden that arises when the Personal Budget stops unexpectedly, when there are delays in receiving the Personal Budgets, or when the Personal Budget received does not match what the service user expected through their review.• Stress and anxiety was often associated with delays in a revised Personal Budget being approved following a review or a change in circumstances. This is often exacerbated by difficulties in getting in touch with the council, not having one point of contact, or receiving conflicting messages from different members of staff.• For some service users, delays associated with systems and processes have been limited to the set-up phase, after which the Personal Budget operates smoothly. This is particularly the case for service users who do not experience changing care needs. However, where there are delays beyond this, when the level of Personal Budget received doesn’t match the level expected, or when Personal Budgets feel not to enable responsiveness to changing care needs, this can lead to anxiety for the service users affected• Some relatives of LD service users experienced frustration when they were unable to find suitable provision or a consistent reliable PA for their relatives. In these cases, the positive impact of Personal Budgets was limited because relatives did not feel they could find providers who were able to deliver the appropriate support or care for their relatives.Understanding the role of personal resources• Service users’ families and social networks continue to be an important part of determining the type and magnitude of impact of Personal Budgets. For the majority of service users, Personal Budgets are being managed by a family member. Service users also at times spend a significant part of their Personal Budgets on employing family or friends directly to provide care. These service users feel very strongly that being able to employ people they are close to has really improved the quality of care that they receive.• A number of service users also draw on family and friends for support, advice and information relating to Personal Budgets. For example, service users often reported employing providers recommended specifically by family members or friends.• Friends and family members also often play an advocate role and work hard to ensure that service users are able to maximise the benefits associated with Personal Budgets. This can involve ensuring that the Personal Budget covers the full costs of care needed, or that the Personal Budget can be spent creatively and in a way that meets broader wellbeing outcomes.• Round three of the research continues to indicate that those service users that are able to contribute their own financial resources are better able to make the most of their Personal Budgets. For example, a number of service users or their family members draw on their own financial resources to cover the cost of care because the initial Personal Budget that had been approved was not enough to meet all their needs.• Delays associated with reviews or problems with others aspects of the Personal Budget system also mean service users need to use their own financial resources. In a small OPM page 4
  10. 10. Impact of Personal Budgets for Adult Social Care in Essex number of cases service users also use their own financial resources to supplement the care that they receive, for example through the purchase of one-off items such as exercise machines.• Service users and their family members continue to feel that being confident, determined and able to articulate and negotiate are the most important skills in ensuring that Personal Budgets work well for them. This was particularly important in ensuring that they were able to secure a Personal Budget that covered the full cost of the service user’s health needs, that they were able to use their Personal Budgets flexibly and creatively, or when dealing with delays. A number of service users and their family members also felt that they had become more confident over time, now that they had been receiving Personal Budgets for over a year.• Service users also reported that drawing on a range of skills that they had gained from previous employment experience had made the experience of managing Personal Budgets easier. For example, those service users who were used to administrative and record keeping work as well as managing Personal Budgets and running their own businesses, found it easier to manage and navigate the Personal Budgets system.Understanding the role of external factors• The extent to which there is a developed, local market of providers impacts significantly upon the ability for service users to achieve positive outcomes. A number of service users reported having exercised choice and control by changing providers because they were dissatisfied with the care they were receiving.• However, some service users have had difficulty finding high quality, specialist provision which. Some reported that a lack of availability of adequate providers meant that they were forced to employ people that provided substandard care.• The role of ECC staff is also key to achieving positive outcomes for service users. They keenly felt that having one point of contact meant that they were able to start receiving payments quickly, have a review of one’s needs when necessary, receive an adequate level of Personal Budget and also access advice and guidance when necessary. Conversely, not having an assigned point of contact was associated with adverse impacts such as not being able to get a review when necessary, not getting an adequate amount of money for care, as well as the frustration which resulted from being passed around from person to person.• Service users also experienced anxiety and stress because they sometimes received conflicting information from different frontline staff, particularly about the range of services that they are able to spend their Personal Budgets on.• A number of service users who had not had a review felt they needed one because of health needs changing or because of wanting the Personal Budget to be recalculated following a change in circumstances, for example leaving college or school.• A number of service users have also had poor experiences of their reviews. For some, this was due to not having a consistent person assigned to the case, and a sense that the social worker did not understand their needs. Others felt the review experience was negative because their social worker was interrogating and reprimanding them for not spending payments correctly; because of being given conflicting information from what they have been told previously or because they find the process confusing and feel as though they have to ‘fight’ for the care they need. OPM page 5
  11. 11. Impact of Personal Budgets for Adult Social Care in Essex• A third of service users recognised having a contingency built into their Personal Budget. However, some of these service users do have concerns about and are unclear about how contingencies are meant to operate. The majority of service users when asked about a contingency, felt that this referred to any surplus that may have built up in their accounts due to care needs and costs varying over different months.Key findings from front line practitioners within ECC• There was very strong support amongst practitioners for Personal Budgets. They recognised that Personal Budgets allowed service users to exercise choice and control over the care they receive and had also seen from experience over time that Personal Budgets, particularly when used creatively, can effectively promote independence and improve service users’ confidence.• On the other hand, some practitioners also identified the risk of abuse and fraud, at the hands of family members particularly, as a potential negative. Others continue to be concerned with the time and delay in the bureaucracy associated with the set-up phase and monies being transferred into service users’ accounts.• The primary challenge that practitioners face is ‘selling’ Personal Budgets to service users. The practitioners felt that selling Personal Budgets has become easier over time as they themselves now know more about the product and are more confident about how it works. This represents a change from round two of the research which found that practitioners had little confidence and insufficient expertise relating to Personal Budgets.• It appears that there may be a lack of clarity amongst practitioners about the purpose and responsibilities associated with monitoring service users on Personal Budgets. When asked about what types of monitoring they have been involved with, the practitioners were only able to identify the ‘four week review’ which is conducted face to face with service users.• The practitioners recognised that the annual review process is an important part of ensuring there are not any safeguarding issues and in making sure that the support plan and Personal Budget is actually working for people. Some felt that conducting reviews can be quite difficult, as they sometimes have to tell service users and their families that they have been spending their Personal Budgets incorrectly or that they have been receiving too much and some will have to be returned. Some also reported problems in meeting the deadlines associated with reviews and in setting them up. Some practitioners also recognised that reviews can also be challenging if the quality and detail of information recorded by previous practitioners is poor.• With regards to ad hoc communication with service users, practitioners reported that service users tend to get in touch with them with questions about what they can use their Personal Budgets for, whether they can use any excess cash that has accumulated in the account on other things that were not in support plan and whether they should be keeping receipts. They also reported that service users are often very upset and angry when they call, often because they have found it difficult to get in touch with the council. Key findings from interviews with service providers• Providers of all types continue to be positive about the personalisation agenda continue to note a ‘slow and steady’ increase in the numbers of people using Personal Budgets, particularly in the domiciliary care sector. OPM page 6
  12. 12. Impact of Personal Budgets for Adult Social Care in Essex• There was a view amongst several providers that after an initial big push in communications two years ago, ECC, and social workers more specifically, were perhaps promoting Personal Budgets less aggressively now. As in previous rounds of the research, providers welcomed more ongoing dialogue about ECC’s plans.• Providers continue to argue that advocacy, information and support are the vital ‘ingredients’ required to scale up the use of Personal Budgets, particularly for those with a learning disability and for older people. Added to this, service users could benefit from basic budgeting skills as well as having realistic expectations about what they can achieve with a Personal Budget.• There was a strong message across different provider types that the social care market is becoming increasingly competitive in terms of both price and quality. Some felt that current conditions are beginning to favour larger providers who are able to operate on economies of scale and who have the funds to invest in services and better marketing. At the same time providers (particularly those in the domiciliary sector) observed that the social care market had become ever more crowded as more small providers and freelance carers have entered the market.• All types of providers emphasised the growing importance of marketing and branding their services and on the need to generate customer insights and track trends in demand in order to inform service development.• There continue to be several examples of providers developing service models that can deliver more flexible and tailored packages of support and care. In their efforts to meet a range of needs several providers had shifted to a point where they no longer neatly occupied a single category of service provision. A number updated their services in response to the health and well being agenda and the demands of Personal Budget users by placing a much greater emphasis on preventative services and re-ablement.• A number of changes to workforce development and recruitment practices were also identified by providers, including training and development in specialist skills (e.g. Autism), the importance of ‘values based recruitment’ and the capacity for carers to play an enabling and facilitating role.• As in round 2 of the research, providers continue to have serious concerns that Personal Budgets are not monitored in enough depth to properly safeguard users and protect them against fraud. Providers also have a cluster of financial concerns including the fact that the hourly rates used in Personal Budgets are failing to reflect and keep up with the real costs of the market. Finally there was also a call for a more stratified market where providers work together – in the interests of service users. RecommendationsRefining ECC processes and systems• There is a clear need to reduce the overall length of the set-up process for Personal Budgets. This could be achieved through more frequent “panel” meetings, a more proportionate approach to signing off support plans for users with less complex needs and better efficiency of handovers between the council and independent support services.• Some practitioners and service users remain unsure of what users can and can’t purchase with their Personal Budget. Updated guidelines – which focus on user OPM page 7
  13. 13. Impact of Personal Budgets for Adult Social Care in Essex outcomes, rather than narrow or prescriptive inputs and outputs – may support practitioners and service users both during the support planning process and beyond.• There is a need to ensure that during the assessment and support planning phase, practitioners emphasise planning for contingency and include an accessible contingency fund.• A review of communication protocols with service users may reveal ways to reduce the amount of time service users spend trying to get in touch with frontline staff. The current system is not cost effective for the council, as service users must explain their personal circumstances and their query to a number of different people, taking up unnecessary time and resource.• Fully maximising the use of third parties undertaking support planning and reviews will have a beneficial impact on practitioners in enabling them to focus on other tasks and will also increase the sources of information available for a user. This in turn will reduce the frustration of service users seeking to make contact with those people supporting them to navigate the social care process.• There is evidence that staff are currently unclear on the purpose of and the process associated with light-touch financial monitoring. It might be helpful to clarify the distinction between this and the review process.• Both staff and service users are unsure when a review should be instigated, and by whom. This should be addressed. ECC should also be clear and transparent with a service user about the purpose of a review and the possible outcomes that could arise from a review. Practitioners should also be encouraged to view the review process not only as a check-up but also a chance to improve outcomes for service users.• ECC practitioners could do more to encourage uptake of Personal Budgets amongst certain groups, such as older service users, by noting the range of options available to reduce the burden on service users and their families. The more familiar a practitioner is with the possibilities of a Personal Budget for a service user, the more likely they are to suggest one. Practitioners with more experience of proposing and establishing a Personal Budget should “buddy” practitioners with less experience.Developing the market• Overall there is a call for ECC to continue and extend its engagement of and consultation with the provider market. In response to this, ECC should expect explicit commitment and evidence from providers of the work they are doing to ensure personalisation, and Personal Budgets in particular, are meaningful for service users. ECC should reassert the importance of Personal Budgets to its vision for adult social care in Essex, in order to reassure – or remind – providers that this remains the intention.• There is appetite for Essex to play a greater role in supporting new entrants to the market, for example in rural areas where service users are currently limited by the lack of providers and in under-developed markets such as support for LD service users. Similarly, there is appetite for the council to ensure small or micro enterprises can play a part in the market. This can be achieved through a framework of providers, or improved procurement processes that don’t preclude smaller organisations from taking part• It would be beneficial for ECC to state the importance of the Voluntary and Community Sector in its market-shaping work. Service users didn’t explicitly express understanding OPM page 8
  14. 14. Impact of Personal Budgets for Adult Social Care in Essex that the VCS could be a provider for their Personal Budgets, and this may encourage them to consider the option of a Personal Budget• ECC should encourage, and perhaps formalise, the role of service users in providing local intelligence and customer insights on the market and its quality.• There is often a discrepancy between the cost of care as provided for in the Personal Budget and the cost of care that service users are being asked to pay. In this context, there is a need for ECC to negotiate and consult with providers to ensure reasonable, appropriate and parallel rates are set by both sides.• There is a need for more easily accessible information around the quality of the market available to service users. At present, service users rely on “word of mouth” or “trail and error.” Within other authorities there are innovative online platforms that provide user generated information on provider quality, which ECC may wish to explore.Supporting social and support networks• In a context where many service users cannot get access to the level of information and guidance they would like from frontline ECC staff – which leads to stress, anxiety and frustration, there may be benefit in the council reviewing the arrangements for service user networks and projects that enable practice share and peer-to-peer support.Supporting skills and knowledge development amongst service users• Service users who are responsible for their own Personal Budgets, but do not have the necessary skills to effectively manage the Personal Budget and manage provider performance should be increasingly supported by ECC, the local VCS and the market to obtain these skills. There are opportunities for training and development around: financial literacy, basic numeracy, negotiation skills, and assertiveness training.• There is evidence that for some service users Personal Budgets can bring about an increase in confidence and self-esteem. The extent to which this outcome can support service users’ transitions back to employment should be explored.Building financial resources• Service users should be encouraged to make the most of the various advice agencies available in Essex that can help maximise their income through the welfare system.• Similarly, whilst the Right to Control Trailblazer remains operational across Essex, service users should be encouraged as far as possible to consider the other funding streams available – particularly related to employment – as a means to explore improved financial resources. OPM page 9
  15. 15. Impact of Personal Budgets for Adult Social Care in Essex1. IntroductionOPM and ecdp (formerly Essex Coalition of Disabled People) were commissioned by EssexCounty Council (ECC) in October 2008, at the time of introducing Personal Budgets for adultsocial care, to conduct a three-year, longitudinal study into the system of Personal Budgets.The study aimed to: 1. Capture the impact of self-managed Personal Budgets on the lives of people who use them, including evidence of how and why impact is being achieved over time; 2. Assess the effectiveness of practices and processes being used by ECC and its partners to support the delivery of Personal Budgets, including evidence of how the market is evolving over the study period.The study was commissioned to provide an evidence base for decision making around self-managed Personal Budgets within ECC. More broadly, it was intended to provide a uniquecontribution to the emerging body of evidence-based learning on the personalisation of adultsocial care.While this work builds on a number of related studies and evaluations undertaken to date,the infancy of Personal Budgets even now means the existing evidence base has tended tobe fairly process-focused and short term with an emphasis on quantitative evidence. Incontrast, this study, rather than focusing on statistical representation and breadth, isdesigned to focus on depth. It aims to develop an understanding of the lived experiences ofpeople that have been managing Personal Budgets for themselves or their families over anumber of years. Additionally, it also aims to supplement the views of service users byexploring both with providers and practitioners that work with Personal Budgets, theirexperiences and perceptions of delivery and impact.1.1 Conceptual framework for the studyBased on an initial desk review and scoping interviews conducted in round one of the study(July 2010), OPM developed a conceptual framework to underpin our approach tounderstanding the personal factors that enable Personal Budgets to have an impact on anindividual, and the effectiveness of processes and practices around Personal Budgets inadult social care. This framework has been validated by key ECC project staff and has beensubjected to ongoing validation through our primary research with recipients of PersonalBudgets and their family.The framework presents the key personal resources and external factors that influence theimpact of Personal Budgets on service users and their families. Individuals may be using arange of personal resources to manage their Personal Budgets, including their own skills andknowledge, their financial resources, as well as the support they receive from family, friendsand their broader social network. However, individuals are also enabled and/or limited byexternal factors including the role of frontline staff, the effectiveness of ECC processes andthe availability of market options. Both the personal resources and external factors areoutlined in the diagrams below: OPM page 10
  16. 16. Impact of Personal Budgets for Adult Social Care in EssexAs in round two of this study, we will throughout this report, and particularly in Section 4,reference this framework to understand the conditions under which service users areenabled to and prevented from achieving positive outcomes through Personal Budgets.Ultimately this framework supports our understanding of the necessary future direction oftravel for the system of Personal Budgets within Essex (and also elsewhere), by defining:• Whether there are typologies of service users who are – or are not – well placed to achieve positive outcomes, without significant support from ECC or other agencies• How and to what extent ECC systems and processes, as well as the external market, provide the necessary support to these service users to achieve positive outcomes from Personal Budgets.1.2 MethodologyThe diagram below illustrates the timescales and methods used over the course of this three-year longitudinal study. In the sections below we provide further detail about the methodsused for the different elements of the study. OPM page 11
  17. 17. Impact of Personal Budgets for Adult Social Care in Essex Round 1 Round 2 Round 3 Oct 2008: Oct–Dec Oct 2011: Study 2010: Focus commissioned Interviews with group with providers front line July 2012: Aug 2009: staff Interviews with Nov 2010 – providers Jan 2011: Oct 2011 – Final Interviews with Jan 2012: Nov 2009–Jan report service users Interviews 2010: published with service Interviews with February users service users 2011: Focus group with Nov 2011 – June 2010: front line staff Jan 2012: Round 1 Interviews report July 2011: with service published Round 2 providers report publishedExperiences of service users and relativesThe study aims to understand, in depth and over time, the experiences of both the serviceusers who receive Personal Budgets and their family members, many of whom manage thePersonal Budget on their relative’s behalf. As per rounds one and two of the study, we haveconducted in-depth, face-to-face interviews with our sample of service users and familymembers. In six cases, the interview was conducted primarily with the Personal Budgetrecipient themselves (sometimes with a little input from other family members), but in themajority of cases interviews were conducted with the family member managing the PersonalBudget, with additional input from the service user where possible.Many of the individuals within our sample are likely to be subject to sudden deteriorations intheir health and wellbeing, and as envisaged, the size of our sample has decreased sinceround one of the study. The number of service users and/or relatives interviewed in roundone was 46, and this number decreased to 263 in round two and to 204 in round 3. Wetherefore decided to undertake additional recruitment in order to boost the sample size to atleast that of round 2. ecdp sent letters of invitation to service users that were receiving aPersonal Budget from Essex County Council and had started to receive these payments at3 Of the 20 participants we were unable to interview in round 2, 7 had died, 4 were not contactable at theirtelephone number or address, 3 had moved into residential care, 3 no longer wished to take part in the study, 2had moved out of the area and 1 was no longer receiving a Personal Budget.4 Of the 6 participants we were unable to interview in round 3, 2 were not contactable at their telephone numberor address, 1 had died, 1 was feeling too unwell to participate and 2 no longer wished to take part in the study.Although it would have been useful to understand the experiences of the service users who no longer received aPersonal Budget, the nature of the participant permission given for this study prohibited OPM from contactingindividuals again. OPM page 12
  18. 18. Impact of Personal Budgets for Adult Social Care in Essexapproximately the same time as the rest of the sample, that is, between July and October2009. This was then followed up by recruitment calls by OPM which resulted in therecruitment of an additional 9 participants, bringing the total number of participants to 29. Wefeel that this sample size of 29 is large enough to understand a diverse range of livedexperiences of Personal Budgets.In order to gain a good cross-sectional picture of service users’ experiences of PersonalBudgets, our sample contains individuals from the following groups: older people, peoplewith physical and/or sensory impairments (PSI) and people with learning disabilities (LD). Abreakdown of the sample according to the three service user groups is summarised below. Service Year 1 (2009) Year 2 (2010) Year 3 (2011) user group Older 25 10 10 PSI 13 9 11 LD 8 7 8 Total 46 26 29Insights from self-directed support practitionersWithin this study on Personal Budgets it was important to gather feedback from ECC frontlinestaff because of the way practitioners’ attitudes to the system of Personal Budgets impact onthe way in which they are delivered and therefore experienced by service users. It wastherefore important to surface any issues and concerns present amongst practitioners so thatECC are able to respond effectively. Additionally, because practitioners support the deliveryof Personal Budgets first-hand, they are able to comment authoritatively on the impact theyperceive for service users and their families. They are also able to offer insightful, practicalfeedback on the necessary modifications to the system and its processes.With this in mind, and as in round 2 of the research, we conducted an in-depth focus groupdiscussion with seven self-directed support facilitators and practitioners in October 2011. Inorder to ensure an element of random selection, the invite to attend the focus group was sentto a randomly selected long list of approximately 60 practitioners. However, it is important tonote that there is still the issue of self selection where those who feel positively aboutPersonal Budgets may have agreed to attend the focus group.Provider perspectivesIn addition to gathering feedback from service users and practitioners, there was also a needto understand the attitudes, opinions and practices of service providers with respect toPersonal Budgets in Essex. It was also important to get an understanding of what providerswere doing in practice to meet the changing needs of the local social care economy. Theseperspectives contributed to an overall assessment of the suitability of the market to providechoice and control to service users. They also contributed to the formation ofrecommendations as to how ECC can support market development for self-directed adultsocial care. OPM page 13
  19. 19. Impact of Personal Budgets for Adult Social Care in EssexIn order to capture the impact of Personal Budgets on service providers and to understandmore about the ways in which providers are adapting to the changing market, we conductedin-depth interviews with seventeen service providers in this last round of research, comparedwith interviews with ten providers in round 2 of the research. It was decided to expand thesample of interviewees as this was the final round of the research.Recruitment of providers involved an introductory email and a follow up telephone call toidentify a relevant member of staff who could be invited to participate. The majority of peoplewho gave an interview held a management position within their organisation. A total of 55providers were invited to take part. Those that declined the invite typically said that they were‘too busy’ to take part and several interviews that were arranged were repeated ‘no shows’.Efforts were made to invite a range of providers to participate and the breakdown achievedwas:• Six providers offering residential care• Four providers offering domiciliary care• Four providers offering day care services• Three providers of advocacy, support and informationA full list of the providers that participated is included in Appendix 1.While the aim was to interview providers who had taken part in the previous round of thestudy - in order to track change over time - this proved very difficult, with only one providerconducting a follow-up interview. In the majority of cases this was because the personpreviously interviewed had moved on from the post and a substitute interviewee was not ableto be put forward.In terms of the way that different types of providers responded to the invitation, as in round 2providers offering day centre services proved particularly difficult to recruit to the study; onbeing contacted members of staff from this provider group typically said that they had noclients on a Personal Budget and little awareness and or views about the roll out of PersonalBudgets in the County.1.3 Reading this reportUnderstanding the experiences of service users and relatives • Section 2 highlights the key findings from round 1 and round 2 of the research. • Section 3 details the types of services people are purchasing with their Personal Budgets, and the types of providers they are accessing support from. • Section 4 outlines the impact of Personal Budgets, both positive and negative, on service users and their families. It also highlights where particular outcomes are associated with service user groups. • Section 5 discusses the key personal resources and external factors that influence OPM page 14
  20. 20. Impact of Personal Budgets for Adult Social Care in Essex the impact of Personal Budgets on service users and their families.Insights from self-directed support practitioners • Section 6 details the findings from the focus group discussion with ECC practitioners, including the extent of their support for Personal Budgets and their experience of the associated processes and systems. • Section 7 outlines the perspectives of a range of providers on the system of Personal Budgets and set outs the ways in which they are responding to the new market of service users.Conclusions and recommendations • Section 8 contains a series of conclusions as to current impact of Personal Budgets on service users, and the supporting market and systems. • Section 9 goes on to recommend a series of considerations and actions for ECC in their on-going development of Personal Budgets.Please note: the names of service users and their family members have been changedthroughout the report.1.4 AcknowledgementsWe would like to thank all of the service users and their relatives who generously gave theirtime to be interviewed as part of this study, and the valuable contribution they have eachmade.We would also like to thank the service providers who gave their time for telephoneinterviews and to staff at Essex County Council who took part in our discussion group.Support from Karen Wright, Victoria James, David Williams and Rosalyn Wilson of ECC hasbeen greatly appreciated.And finally, we would like to acknowledge the contributions of the wider projects teams atboth OPM and ecdp for contributions to this important research. OPM page 15
  21. 21. Impact of Personal Budgets for Adult Social Care in Essex2. Key findings to dateThe first round of research was conducted in November 2009, at which time many individualsin our service user sample had yet to start receiving their Personal Budgets and accessingtheir chosen services. Therefore, many of the findings from the first round of the study relateto the process of setting up Personal Budgets in place at that time. Below is a summary ofthe key findings from round one of the study:• There were lengthy delays between service users undergoing a RAS assessment and receiving their first payment. Individuals were frustrated by having to chase ECC for access to the money that they had been told would be available to them.• Individuals managing and/or receiving Personal Budgets would have welcomed greater clarity and transparency from frontline practitioners as to what the various stages of setting up a Personal Budget would be.• Access to better tailored and more flexible care had a series of positive impacts for service users and their family members whose Personal Budgets were already in place, including: – Access to better tailored and more flexible care and support from a range of different providers – An increased sense of dignity for service users – Increased opportunities for social interaction – A decreased burden of care for family members.• However, there was a concern that the local market was not sufficiently developed to offer full choice and control to all service users, or that there was sufficient information available for users to navigate the existing market.The second round of research took place in November 2010, at which time individuals in oursample had been receiving services for at least a year in most cases and so it was possibleto explore in far greater depth the lived experience of managing and receiving services viaPersonal Budgets. Below is a summary of the key findings from round two of the study:• There was strong evidence that service users can access high quality, and more tailored and flexible services through their Personal Budget. Alongside a strong continued demand for traditional social care (primarily in the form of domiciliary care services), there was an increased demand for services that supported leisure and personal development more broadly.• Round 2 of the research also uncovered an increased sense of control amongst some service users on Personal Budgets and their families compared to round one.• Improved family relationships were seen as the result of a reduced burden of care on family members. Service users also reported a stronger sense of self thanks to being able to pursue their own individual interests, increased opportunities for social interaction and improved emotional wellbeing. OPM page 16
  22. 22. Impact of Personal Budgets for Adult Social Care in Essex• Service users and their families underlined the importance of certain skills and knowledge in ensuring positive outcomes to benefit from Personal Budgets. Primarily they noted the need for confidence, assertiveness and the ability to articulate yourself in order to be influence decisions made by ECC staff• For a small but significant number of service users, the system of Personal Budgets was causing considerable levels of stress, and anxiety, because of the unwelcome administrative burden or the continuing lack of clarity about exactly what they are and are not allowed to spend the Personal Budget on.• The extent to which there is a developed, local market of providers impacts significantly upon the ability for service users to achieve positive outcomes. In some cases service users are not able to exercise choice and control in their relationship with providers, and in other cases the market is so under-developed that service users are forced to access poor quality services for fear that if they complain they will lose their service all together.• None of the service users used Personal Budgets to purchase information, advice or brokerage services.• At the time of the second round of the research few service users had had a formal review. We also engaged with service providers and front line staff in round two of the research. Below is a summary of the key findings from these two elements of the research.• Amongst service providers engaged with, there was in general an acceptance of the fact that Personal Budgets are now a feature of the social care market. Providers underlined the growing importance of branding and marketing services and identified some new training needs amongst staff e.g. around person centred care, how to cost services, and providing brokerage and advocacy services.• A number of providers felt that Personal Budgets will drive up quality within the market as individuals choose to take business away from poor quality providers. Many also argued that the success and scale of benefits is dependent on the extent to which service users have access to effective brokerage and support throughout the process.• Amongst front line staff engaged with there was strong support for the potential of Personal Budgets although there was a sense of frustration that their uptake remains low amongst older service users. On the other hand, many felt that employing personal assistants who were not regulated or CRB checked was a risky strategy for service users.• With regard to specific ECC process, practitioners had a lack of clarity over reasons for conducting financial monitoring, and were very aware of the time pressures associated with the review process, leading to limited outcomes as a result.In the third and final round of the research, the service users and their families have nowbeen purchasing services for at least two years and a large number have had a formalreview. OPM page 17
  23. 23. Impact of Personal Budgets for Adult Social Care in Essex3. How Personal Budgets are being spentIn this section we provide a description of the range of services that are being purchased andproviders that are being engaged by service users and their families. In particular wehighlight the differences in the pattern of service consumption by the different service usergroups. In Section 3.3 we also identify any observed differences in the pattern of serviceconsumption since round two of the research.3.1 Range of services purchased with Personal BudgetsService users and their families purchase a wide range of services and products with theirPersonal Budgets. For the purpose of analysis, these have been grouped into 5 broadcategories: (i) social care, (ii) leisure, personal development and domestic help, (iii) accessand equipment, (iv) health services and (v) information and brokerage.The table below provides a snapshot of the types of services being purchased by thedifferent service users groups. Type of Example of Older service Service users Service users All service service service users (N=10) with PSI with LD (N=8) users (N=11) (N=29)Social care Personal care, 9 7 6 22 respite careLeisure, PA support, 2 8 7 17personal help arounddevelopment the house, tripsand domestic and activitieshelpAccess and Transport, 1 4 4 9equipment health equipmentHealth Physiotherapist 1 2 0 3servicesInformation Advocacy, 0 0 0 0and brokerage advice and supportecdp pass Payroll 3 3 2 8 support, accounts handlingIt appears that although service users were most likely to be spending their Personal Budgeton purchasing traditional social care services, there were also a large number of serviceusers purchasing leisure, personal development and domestic help services. The number ofservice users spending their Personal Budgets on traditional social care appears to have OPM page 18
  24. 24. Impact of Personal Budgets for Adult Social Care in Essexrisen since last year. However, this does not reflect a change in the way Personal Budgetsare being spent, but rather is a result of the change in the sample of service users that wereincluded in the study.A number of service users were also using Personal Budgets to support the care theyreceive through the purchase of equipment or access to transport. On the other hand, as inround 2 of the research, few were spending their Personal Budget on health services. Finally,a minority of service users, across all three service user groups, were also using ecdp pass– a service offered by ecdp that helps disabled people employ and pay carers and personalassistants (PAs) – to manage their Personal Budgets. All of them viewed the serviceprovided by ecdp pass as a very valuable service and instrumental in making PersonalBudgets an attractive option for service users (see Section 5.2.1 – The role of the localmarket – for further discussion about this).(i) Social careExamples: Carers or PAs for personal care, respite care, day care centresAs illustrated in the table above, the majority of service users tend to use their PersonalBudgets on traditional social care services. As in round two of the research, older serviceusers were most likely to be spending the majority of their Personal Budgets on purchasingtraditional social care services. A number of these service users believed that PersonalBudgets were in fact only meant to be spent on purchasing such services, although somewould very much like to be purchasing a wider range of services and products. “I want a bit more freedom in knowing how I can use it, “(Older service user)The social care services purchased by service users include personal care to help with dailytasks such as personal hygiene and nutrition. Again, older service users were most likely tobe purchasing these services and tended to contract carers from care agencies to providethese services. Service users across the different groups also often spent a part of theirPersonal Budgets on visits to day care centres a few times a week.Many service users were also increasingly using their Personal Budgets to purchase respiteservices in order to give family members the opportunity to take a break or go on holiday. Forolder service users this tends to include either sit-in services for a few hours during the weekso that family members are able to run errands or participate in leisure activities. It also oftenincludes extended residential care for service users for when family members go on holidays.On the other hand, respite services for service users with learning disabilities also oftenincludes live in services either from PAs or from carers, rather than residential care services.In the case of one service user with learning disabilities, respite care was also being used toprepare the service user for independent living.As in round two of the research, respite services were seldom mentioned by service userswith physical or sensory impairments.(ii) Leisure, personal development and domestic helpExamples: PA support, leisure activities, cleaners and gardeners OPM page 19
  25. 25. Impact of Personal Budgets for Adult Social Care in EssexA number of service users with learning disabilities or physical or sensory impairments werespending their Personal Budgets on purchasing services focused on leisure and personaldevelopment. These tend to include a wide range of leisure activities such as swimming,bowling, gym membership, bowling, theatre and other days out. It also includes PA servicesto support broader wellbeing and promote independence. PAs often help service users withdaily tasks such as cooking, running errands and shopping or accompanying them on leisuretrips and activities, and therefore make service users less dependent on family members.As in round two of the research, very few older service users were spending their PersonalBudgets on leisure and personal development. However, some do spend a small portion ondomestic help such as cleaners and gardeners.(iii) Access and equipmentExamples: transport, miscellaneous products and equipmentSome service users with learning disabilities and one older service user were using a portionof their Personal Budgets to cover the cost of transport to and from day centres or leisureactivities. On the other hand, some service users with physical or sensory impairments wereoften purchasing one off products such as special needs shoes, heating pads, a wheelchairor a subscription to ‘PA pool’. These types of products or equipments were viewed by theseservice users as complementing the other services they purchase with their PersonalBudgets.(iv) Health servicesA small number of service users were spending a portion of their Personal Budgets onsecuring physiotherapy sessions. Two of these are service users with physical or sensoryimpairments who had a stroke at a relatively young age and strongly feel that physiotherapysessions have greatly helped improve their health outcomes. Both service users noted thattraditional stroke services offered a far more limited and less well tailored option for them,and hence the value of a Personal Budget.(v) Information and brokerageNo service users were currently spending their Personal Budgets on information andbrokerage support to help them manage their Personal Budgets. At the same time, a numberof service users reported that they would appreciate more advice and information relating tohow they could spend their Personal Budgets and identifying high quality providers in theirlocal area. Some also felt that they would like more support in managing providers, forexample, in situations when providers chose to increase their rates.3.2 Range of providers employedService users and their family members contract a range of different providers in Essex,including (i) private agencies (e.g., care agencies, day centres), (ii) freelance individuals,including family and friends and (iii) commercial organisations (e.g., gyms and theatres).There has been little change in the types of providers being employed by service users OPM page 20
  26. 26. Impact of Personal Budgets for Adult Social Care in Essexcompared to round 2 of the research, although there has been some increase in the numberof service users with learning disabilities that are contracting PA support from freelanceindividuals which could indicate a gap in the market (see Section 5.2.1 – The role of the localmarket – for further discussion).In the sections below we discuss the differences in the types of providers being employed bythe different service user groups.Older service usersThe majority of older service users were spending most of their Personal Budget ontraditional social care services. In general, they were least likely to be employing freelanceindividuals, and more specifically, family or friends to provide services. They tended tocontract private care agencies to provide daily personal care or sit-in respite services. Aminority are also purchasing services from freelance individuals. For example, one serviceuser is employing a PA to provide daily personal care and another is purchasing PA supportto help promote independence. In the case of the latter, the service user’s god daughter hasbeen employed as the PA. Other freelance individuals were employed to help service userswith domestic tasks and include cleaners and gardeners. Only one service user purchasesleisure opportunities, such as trips to the theatre, from commercial organisations.PSI service usersWhereas older service users tend to purchase social care services from private careagencies, there is greater variability in the types of providers being employed by serviceusers with physical or sensory impairments for these services. Although some service usersdo purchase social care services from private care agencies, there are many others thatemploy freelance carers or even family or friends to provide this same service.In general, service users with physical or sensory impairments were most likely to beemploying freelance individuals, and more specifically, family or friends to provide services.This tends to be because this service user group particularly values the provision of highquality and consistent support that is provided by a known and trusted individual. Forexample, some employ PAs, who are also at times family or friends, to help promoteindependence and support personal development activities. One service user was alsoemploying physiotherapists that are part of his social network. However, there is one serviceuser that was purchasing PA support to help promote independence from a private PAagency and was very happy with the quality of the staff.Given that service users with physical or sensory impairments were most likely to bepurchasing leisure opportunities, they also use a range of commercial organisations, such asgyms, golf clubs and football clubs, from which to purchase these services.LD service usersThis service user group purchases services from a mix of private agencies and freelanceindividuals, including family and friends. Private PA agencies and freelance PAs were oftenused to either provide daily personal care or support to participate in leisure and personaldevelopment activities. Additionally, in some cases where the market has failed familymembers were being employed to provide personal care and support for leisure activities. OPM page 21
  27. 27. Impact of Personal Budgets for Adult Social Care in EssexService users as direct employersOnly two service users were directly employing PAs to provide help with personal care andsupport with leisure activities, and both were service users with learning disabilities. Thisreflects the fact that few service users are willing to take on the responsibilities associatedwith employment law and associated issues like tax and holiday allowances. When serviceusers do employ freelance individuals, they tend to pass on responsibility for administrationto the provider or in the case of family and friends, pay them directly and let them takeresponsibility for tax payments etc.The role of voluntary and community sector (VCS) providersThere is very limited evidence of service users contracting VCS organisations to provide careand support. It is also interesting to note that service users do not tend to differentiatebetween private and voluntary sector providers. Instead, they are more aware of thedifferences between care provided by freelance and individuals and those attached toagencies or organisations.Risk and safeguardingAlthough a considerable number of service users are purchasing services from freelanceindividuals, including family and friends, very few service users spontaneously mentionissues of risk in the context of Personal Budgets. Instead, their focus is on being able tochoose high quality providers or receiving services from an individual that they have atrusting relationship with, or to whom they are well matched and have the potential to get onwith. On the other hand, front line staff and providers continue to be very concerned aboutthe risks associated with service users employing staff that are not regulated and in somecases not even CRB checked. (To read more about the perspective of front line staff andpractitioners see Chapters 6 and 7 respectively.)3.3 Change in services purchased and providers employedChange in services purchasedApproximately one third of service users have changed the services that they have beenpurchasing over the last year. This reflects a change since round two of the research wherevery few service users reported making any changes to services purchased.For a number of service users, the change in services reflects a change in needs or wants.For example, four older service users have either increased the daily personal care theyreceived or started purchasing new services (e.g. physiotherapy) because their health haddeteriorated over the last year.In three of these cases, the change came about as a result of health needs beingreassessed during the review. Another two service users (one older service user and onewith a physical or sensory impairment) have scaled back the services they are purchasingbecause of their improved health. One has scaled back on daily personal care and another OPM page 22
  28. 28. Impact of Personal Budgets for Adult Social Care in Essexhas scaled back on PA support. In fact, the latter is considering coming off Personal Budgetsas a result of his improved health. Another service user with a physical or sensoryimpairment has scaled back the number and range of leisure activities purchased with thePersonal Budget as a result of not enjoying them anymore.Additionally, one service user with a learning disability, whose Personal Budget used to payfor further education, has stopped attending college because he felt that the activities andclasses in the special needs classes he was required to attend were no longer suited to hisabilities and interests. "We did ask Chelmsford College can he not go into another class with his support worker and just see it, but no, he had to go in the special needs class and I think that was the down fall… some may like making models, some may not, some may be verbal, some maybe not… youre not going to be able to have any programme that satisfies all their needs." (Mother of service user with LD)Reviews have also resulted in other changes to services for some service users. Forexample, following the review, one service user with learning disabilities saw his PersonalBudget increase to cover respite care for while his family goes on holiday as well as anincrease in the number of weekly PA hours for supporting independence. On the other hand,two service users have seen their Personal Budgets decrease after a review because thereviewer felt that the amount of payment was in excess of what the service user needed orhad been spending over the last year. This decrease in Personal Budgets mostly resulted inservice users purchasing fewer leisure and personal development activities. In one case theservice user felt this change reflected her needs and wants, whereas in the other case theservice user was disappointed that the Personal Budget had fallen.Although the majority of service users have not changed the services they are purchasingbecause they feel that the services they received are sufficient in meeting their needs, thereare a few older service users whose health had deteriorated significantly over the last yearand feel that there needs to be an increase in the services they purchase, and therefore inthe amount of Personal Budget they receive. However, these service users have not yet hada review so have not been able to discuss their changing health and social care needs withanyone.Change in providers engagedA little less than a third of service users have changed the providers that they engage todeliver services over the last year. Additionally, service users with learning disabilities andolder service users were much more likely to have changed providers compared to serviceusers with physical or sensory impairments.As in round two of the research, service users with learning disabilities have changed thePAs that they employ to support them with leisure activities and personal development. Forsome this has meant changing from one freelance PA to another freelance PA, whereas forothers it has meant changing from one PA agency to another PA agency. For one serviceuser this change was a result of not being able to find reliable PAs who are willing to committo providing care without having their transport covered. Another service user changed PAagencies, because there was no consistency in the PAs sent by the first agency andbecause they were often likely to cancel at the last minute which meant that the service user OPM page 23
  29. 29. Impact of Personal Budgets for Adult Social Care in Essexwas unable to leave the house that day. Another service user with autism changed PAagencies because he and his parents felt that the PAs sent by the first agency did not havethe specialist skills and knowledge that were needed to support his needs: "Well we got through quite a few of their staff and really they weren’t suitable for the job in my opinion and actually created more problems for us than what they solved." (Parent of service user with LD)These findings indicate that there is a gap in the market for people who are able to providehigh quality specialist care for people with learning disabilities and complex needs.A number of older service users and one service user with a physical or sensory impairmentalso reported having changed the private care agencies that they employ to provide dailypersonal care. This was often due to problems and mistakes with invoicing, a lack ofconsistency in the carers that were sent by the agency or because of the carers coming atinconvenient and inflexible times: “They were coming like you know, sort of like six oclock to put him to bed, sort of coming at 11 oclock in the morning. Well he had no life. You couldnt do anything. I mean, we like to go out.” (Wife of older service user)Informing the council about changesParticipants generally tend to feel that they would not need to tell the council if they decidedto change the providers they are using. They recognised that the purpose of PersonalBudgets is to give them the freedom and choice to employ whomever they like: “As far as I know Id be quite at liberty to take that on board myself and not need to have any recourse to social services about it." (Older service user) “Part of the thing they gave me was the freedom to be able to use the services in the way that I need them, so going to the council would have bogged them down in more bureaucracy which is what theyre trying to get away from.” (PSI service user)However, there are mixed views about whether service users would need to tell the councilabout making changes to the services they are purchasing. Some service users, particularlythose that are spending their Personal Budgets primarily on leisure and personaldevelopment, again feel that Personal Budgets provides service users with the choice tospend the Personal Budgets as they see fit: "You know, they just keep saying to you that it’s down to anything that supports his needs." (Wife of PSI service user)On the other hand, others believe that they would in fact have to tell the council beforemaking any changes to the services that they purchase whereas some reported that theywere unsure about whether they would need to tell the council. OPM page 24
  30. 30. Impact of Personal Budgets for Adult Social Care in Essex4. Impact of Personal Budgets on service users and familiesOne of the main aims of this study is to capture the impact of Personal Budgets on the livesof the people who are using them, and their families.The section below discussed the range of impacts of Personal Budgets on the people whoare using them and their families. This includes positive and adverse impacts on people’slives and involves looking beyond narrowly fixed social care outcomes, to wider impact onpeople’s lives.4.1 Positive impactIn the current round of interviews, service users included in the sample had been receivingPersonal Budgets for just over two years. A number and range of outcomes were identified inthe first and second round of the research, and in the current round a greater number ofoutcomes for service users and relatives have had time to develop and be embedded.There is evidence of each service user group experiencing positive outcomes. We haveindicated below where a user group is strongly associated with a particular impact.The factors which facilitate these positive impacts are discussed in Chapter 5.4.1.1 Improved quality of care through increased choice and controlIncreased choice and control over providers engagedAs in round two of the research, service users and families reported receiving better levels ofcare, because of the nature of their new, more direct relationship with providers and theirgreater sense of choice and control over types of services and providers.In round three of the research, many service users and their relatives had exercisedincreased choice and control over the providers they employ to provide their care. As inround two, the outcome of this was to purchase care which better meets their needs, is of abetter quality and which they are more satisfied with.The increased choice to make decisions about who delivers care was described as the ‘bestthing about Personal Budgets’ by one service user: "The best side of it is that you can go and source your own service provider, whereas I would imagine that if it was put upon you by the council – that they would employ whoever under a contract scheme and they would do it en masse and you would just be a number, whereas doing it this way I can make sure Im not just a number." (Service user with PSI) OPM page 25
  31. 31. Impact of Personal Budgets for Adult Social Care in EssexFor a number of service users, having increased choice specifically means that they are ableto employ a friend, another individual with who the service user has a personal and trustingrelationship, or a family member. This was felt to be important because such as an individualwould have a better understanding of the service user’s needs and therefore be able toprovide a better quality of care. Having a PA or carer who was liked and the service user feltcomfortable with was found to be important across service user groups but particularlyamongst service users with complex or specialist needs, where receiving care from someonethe service user trusted and who knew the service users needs was of utmost importance.For example, one service user with learning disabilities was employing her step father as hercarer, and this had benefits as he knew how to communicate with her. Having a consistentcarer who understands her needs has meant that this service user is more happy andcontent and this has improved quality of life for the whole family. This was also the case foranother service user with learning disabilities who was employing her sister as her carer: “I tried different people but Sarah is a very, very difficult child and the thing is, I spoke to the advocacy woman, and I said, Ive tried other people but it isnt working. So Ive got to use my other daughter because she listens to her, shes strong with her, she knows her, shes confident with her.” (Mother of service user with LD)Another service user’s wife also described how being able to employ their cleaner’s husband,with whom her husband felt comfortable, had been very important: "It’s difficult to get respite care and pay for it in the way that the plan envisaged, because he has emotional problems, so you can’t just ring up an agency and have somebody turn up. Not that I’ve tried it, but I know from when my father was ill, you get different people each time and so on, and it just couldn’t work for David. My cleaner’s husband is a really sort of big chap so he can help David get in and out of bed and so on. He’s really easy going and so on, so on the odd occasion now, I’ve been able to go away for a night, or a weekend, he’s come in to stay and I’ve been able to pay him. He know David’s situation and David knows him as a friend." (Wife of PSI service user)For some service users increased choice has meant that they have been able to changeproviders if they are not happy with the quality of care being delivered. They described anumber of instances where they had changed care agencies or PAs because they hadbecome inflexible, inconsistent or simply were not providing good quality care. "It was odd at first but this way we get the [flexibility]... if he comes home one day and says “I don’t like so and so”... It does give us the option, I would feel awful, but it does give us the option to say “Look, you know, maybe its not working out, Daniel’s not so happy”.” (Mother of service user with LD)In general, service users have become more confident with regards to exercising choice andcontrol over providers over the last few years. In the first and second round of the research,the concept of choice and control was still quite new to service users. However, in the finalround of research, service users’ responses indicated that the concepts have now becomeembedded into their understanding of how Personal Budgets empower people to becomedirect employers. OPM page 26
  32. 32. Impact of Personal Budgets for Adult Social Care in EssexAccess to consistent, flexible or personalised careAs in round two of the research, for some service users, increased choice means being ableto get consistent care, that is, to ensure that it is the same carers or PAs that provide careevery day. Whilst consistent care was considered important across service user groups, itwas specifically important for service users with challenging behaviour, where it wasparticularly valuable for carers to be confident with the service user and to know their needs.For example, the family member of one older service user described how the PersonalBudget had been instrumental in giving the choice to purchase this consistent care: "If I hadn’t have had a Personal Budget and the choice as to who my mum would get on with… if she had inconsistency in carers, it wouldn’t have worked. She would have screamed at people, told them they were “dark coloured, get out”. She would have been dramatic and that would have affected my father, that would have affected myself. So Im really happy that I have a Personal Budget for my mother. Its worked well." (Daughter of older service user)Round two of the research also identified that for some service users, an impact of PersonalBudgets was purchasing more tailored and flexible support. This round also found thatchoice over what care to purchase can also relate to having greater flexibility in when care isdelivered. For example, if a service user can choose care which is flexible, it means care canbe fit into other aspects of daily life instead of ‘normal life’ being determined by visits fromcarers. This is particularly important for PSI service users who are trying to lead active livesor who have family responsibilities. "I get to choose who, where and what. I wasnt comfortable when we had the lady coming in, putting me to bed at 6 and getting me up at 9, Im 25, I don’t want a complete stranger coming in to my house and washing my hair for me. Now, I can choose somebody that I trust and that Im comfortable around.” (PSI service user) "There’s more flexibility because if Sue wants the extra hours, we know the money’s there to pay it. Like we went to a wedding, didn’t we, at the beginning of September, well Hannah was in a bit earlier, got Sue dressed, made sure – perhaps instead of being here her usual hour to an hour and a half, she was here two, two and a half hours, and that makes all the difference because Sue’s not flustered." (Husband of PSI service user)A number of service users have used Personal Budgets to purchase care which better suitstheir needs. The impact of this has been improving the quality of care received. Forexample, one service user has used Personal Budgets to employ a PA to deliver personalcare and this has meant that he no longer has to rely on relatives to provide this care. Thishas resulted in the service user receiving an appropriate type and level of care which theservice user’s relatives did not feel they could offer him. In this instance, the Personal Budgethas been used to purchase a better quality of care and also has freed up relatives fromhaving a caring role in his life, which has impacted positively on relationships between familymembers.4.1.2 Improved wellbeing, living a fuller lifeIn round two of the research, Personal Budgets were identified as a platform for serviceusers to pursue interests of their own, and gain greater personal fulfilment. Similarly in this OPM page 27

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