impact of personal budgets in adult social - final report

Longitudinal study of Personal Budgets for Adult Social Care in Essex Final report

September 2012

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Impact of Personal Budgets for Adult Social Care in Essex

Client Essex County Council

Document title Longitudinal study of Personal Budgets for Adult Social Care in Essex – Round three final report

Date modified 17 August 2012

Status Final

Classification For publication

OPM project code 7078

Author Sanah Sheikh, Tim Vanson, Natasha Comber from OPM and Rich Watts from ecdp

Quality assurance by Dr Chih Hoong Sin

Contact details

Main point of contact Sanah Sheikh

Telephone 020 7239 7803

Email [email protected]

If you would like a large text version of this document, please contact us.


Foreword

The publication of this report represents the culmination of our 3-year journey in researching the impact of Personal Budgets for service users in Essex. As this is the final report, we are taking this opportunity to share some thoughts as the people responsible for leading this unique piece of work over the last 3 years.

Since the launch of personalisation in 2007, the entire landscape of social care has continued its dramatic transformation. Despite a background of austerity we have continued the drive to offer the benefits of personalisation through the mechanism of a Personal Budget.

This report captures the learning from our journey and clearly shows the benefits personalisation brings. But it also confirms what we always knew to be the case: that there is always more to do. It also clearly shows that it is not simply the role of local authorities and their staff to do more: there are factors that are in the control of users themselves and their local 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. But we’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 of our personalisation journey was a clear statement of this approach, and learning points that have been raised in this latest round of research (conducted at the end of 2011) have been acted upon.

The future, as the recently published White Paper “Caring for Our Future” makes clear, is one in which personalisation is embedded in the core of everything we do. It is also one that

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recognises Personal Budgets are one mechanism of many for achieving a personalised system, and not just an end in itself.

Our commitment to personalisation and different ways of delivering public services can be seen through our work as a Community Budgets pilot and Right to Control Trailblazer. It is also exemplified through the relationship between Essex County Council and ecdp, which symbolizes 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 to thank the project teams at OPM, ecdp and Essex County Council for their work over the las3 years. Though many have contributed, we would particularly like to thank the Project Managers at OPM – Sally Neville, Sarah Holloway and Sanah Sheikh – and Vicky James at ECC.

Of course, this study would have been nothing without the time and generosity of the people whose experiences we tracked. We hope their experience of being part of this research has been as beneficial to them as learning from their experiences has been for us and, we hope, others on their own journey towards personalisation.

Liz Chidgey

Executive Director Adult Social Care, Essex County Council

Mike Adams

Chief Executive, ecdp

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ContentsForeword....................................................................................................................................i

Contents................................................................................................................................... iii

Executive Summary..................................................................................................................1

1. Introduction.........................................................................................................................10

2. Key findings to date............................................................................................................16

3. How Personal Budgets are being spent..............................................................................18

3.1 Range of services purchased with Personal Budgets.................................................18

3.2 Range of providers employed.....................................................................................20

3.3 Change in services purchased and providers employed............................................22

4. Impact of Personal Budgets on service users and families................................................25

4.1 Positive impact............................................................................................................25

4.2 Adverse impact...........................................................................................................33

5. Explaining the impact on service users and their families..................................................37

5.1 Personal resources.....................................................................................................37

5.2 External factors...........................................................................................................43

6. Practitioners’ reflections on Personal Budgets...................................................................50

6.1 Extent of practitioner support for Personal Budgets....................................................50

6.2 Impact of Personal Budgets on practitioners’ role and function..................................52

6.3 Practitioner reflections on ECC systems and processes............................................54

7. Service providers’ reflections on Personal Budgets............................................................57

7.1 Extent of provider support for Personal Budgets........................................................57

7.2 Impact of Personal Budgets on social care providers.................................................59

7.3 Success factors and challenges for Personal Budgets...............................................63

8. Summary and conclusions..................................................................................................65

9 Recommendations...............................................................................................................72

Appendix 1: Service providers interviewed.............................................................................78

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Executive Summary

Introduction

OPM and ecdp (formerly Essex Coalition of Disabled People) were commissioned by Essex County Council (ECC) in October 2008, at the time of introducing Personal Budgets for adult social 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) and people with physical and/or sensory impairments (PSI) in order to understand a diverse range of lived experiences and the extent of challenges and successes within specific service user groups. The number of service users and/or relatives interviewed in round one was 46, and this number decreased to 261 in round two and to 202 in round 3. We therefore decided to undertake additional recruitment in order to boost sample size to at least that of round 2 which resulted in the recruitment of an additional 9 participants, bringing the total number of participants to 29.

As well as talking to service users to understand the suitability of practices, processes and the local provider market, this study also involved interviews with 17 local service providers from both the private and the voluntary and community sector, and a focus group with 7 front-line practitioners to understand their perceptions of the overall system of delivery of Personal Budgets for social care.

Key findings from interviews with service users and their families

How 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 as

1 Of the 20 participants we were unable to interview in round 2, 7 had died, 4 were not contactable at their telephone number or address, 3 had moved into residential care, 3 no longer wished to take part in the study, 2 had 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 number or 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 a Personal Budget, the nature of the participant permission given for this study prohibited OPM from contacting individuals again.

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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,

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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 how they spent their Personal Budgets from what was specified in their original support

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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 number of cases service users also use their own financial resources to supplement the

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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.

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

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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.

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.

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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.

Recommendations

Refining 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 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.

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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 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,

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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.

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1. Introduction

OPM and ecdp (formerly Essex Coalition of Disabled People) were commissioned by Essex County Council (ECC) in October 2008, at the time of introducing Personal Budgets for adult social 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 unique contribution to the emerging body of evidence-based learning on the personalisation of adult social 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 to be fairly process-focused and short term with an emphasis on quantitative evidence. In contrast, this study, rather than focusing on statistical representation and breadth, is designed to focus on depth. It aims to develop an understanding of the lived experiences of people that have been managing Personal Budgets for themselves or their families over a number of years. Additionally, it also aims to supplement the views of service users by exploring both with providers and practitioners that work with Personal Budgets, their experiences and perceptions of delivery and impact.

1.1 Conceptual framework for the study

Based 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 to understanding the personal factors that enable Personal Budgets to have an impact on an individual, and the effectiveness of processes and practices around Personal Budgets in adult social care. This framework has been validated by key ECC project staff and has been subjected to ongoing validation through our primary research with recipients of Personal Budgets and their family.

The framework presents the key personal resources and external factors that influence the impact of Personal Budgets on service users and their families. Individuals may be using a range of personal resources to manage their Personal Budgets, including their own skills and knowledge, their financial resources, as well as the support they receive from family, friends and their broader social network. However, individuals are also enabled and/or limited by external factors including the role of frontline staff, the effectiveness of ECC processes and the availability of market options. Both the personal resources and external factors are outlined in the diagrams below:

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As 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 are enabled to and prevented from achieving positive outcomes through Personal Budgets. Ultimately this framework supports our understanding of the necessary future direction of travel 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 Methodology

The 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 methods used for the different elements of the study.

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Experiences of service users and relatives

The study aims to understand, in depth and over time, the experiences of both the service users who receive Personal Budgets and their family members, many of whom manage the Personal Budget on their relative’s behalf. As per rounds one and two of the study, we have conducted in-depth, face-to-face interviews with our sample of service users and family members. In six cases, the interview was conducted primarily with the Personal Budget recipient themselves (sometimes with a little input from other family members), but in the majority of cases interviews were conducted with the family member managing the Personal Budget, with additional input from the service user where possible.

Many of the individuals within our sample are likely to be subject to sudden deteriorations in their health and wellbeing, and as envisaged, the size of our sample has decreased since round one of the study. The number of service users and/or relatives interviewed in round one was 46, and this number decreased to 263 in round two and to 204 in round 3. We therefore decided to undertake additional recruitment in order to boost the sample size to at least that of round 2. ecdp sent letters of invitation to service users that were receiving a Personal Budget from Essex County Council and had started to receive these payments at

3 Of the 20 participants we were unable to interview in round 2, 7 had died, 4 were not contactable at their telephone number or address, 3 had moved into residential care, 3 no longer wished to take part in the study, 2 had 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 number or 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 a Personal Budget, the nature of the participant permission given for this study prohibited OPM from contacting individuals again.

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Oct 2008: Study commissioned

Aug 2009: Interviews with providers

Nov 2009–Jan 2010: Interviews with service users

June 2010: Round 1 report published

Oct–Dec 2010: Interviews with providers

Nov 2010 – Jan 2011: Interviews with service users

February 2011: Focus group with front line staff

July 2011: Round 2 report published

Oct 2011: Focus group with front line staff

Oct 2011 – Jan 2012: Interviews with service users

Nov 2011 – Jan 2012: Interviews with service providers

Round 1 Round 2 Round 3

July 2012:

Final report published


approximately the same time as the rest of the sample, that is, between July and October 2009. This was then followed up by recruitment calls by OPM which resulted in the recruitment of an additional 9 participants, bringing the total number of participants to 29. We feel that this sample size of 29 is large enough to understand a diverse range of lived experiences of Personal Budgets.

In order to gain a good cross-sectional picture of service users’ experiences of Personal Budgets, our sample contains individuals from the following groups: older people, people with physical and/or sensory impairments (PSI) and people with learning disabilities (LD). A breakdown of the sample according to the three service user groups is summarised below.

Service user group

Year 1 (2009) Year 2 (2010) Year 3 (2011)

Older 25 10 10

PSI 13 9 11

LD 8 7 8

Total 46 26 29

Insights from self-directed support practitioners

Within this study on Personal Budgets it was important to gather feedback from ECC frontline staff because of the way practitioners’ attitudes to the system of Personal Budgets impact on the way in which they are delivered and therefore experienced by service users. It was therefore important to surface any issues and concerns present amongst practitioners so that ECC are able to respond effectively. Additionally, because practitioners support the delivery of Personal Budgets first-hand, they are able to comment authoritatively on the impact they perceive for service users and their families. They are also able to offer insightful, practical feedback 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 group discussion with seven self-directed support facilitators and practitioners in October 2011. In order to ensure an element of random selection, the invite to attend the focus group was sent to a randomly selected long list of approximately 60 practitioners. However, it is important to note that there is still the issue of self selection where those who feel positively about Personal Budgets may have agreed to attend the focus group.

Provider perspectives

In addition to gathering feedback from service users and practitioners, there was also a need to understand the attitudes, opinions and practices of service providers with respect to Personal Budgets in Essex. It was also important to get an understanding of what providers were doing in practice to meet the changing needs of the local social care economy. These perspectives contributed to an overall assessment of the suitability of the market to provide choice and control to service users. They also contributed to the formation of recommendations as to how ECC can support market development for self-directed adult social care.

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In order to capture the impact of Personal Budgets on service providers and to understand more about the ways in which providers are adapting to the changing market, we conducted in-depth interviews with seventeen service providers in this last round of research, compared with interviews with ten providers in round 2 of the research. It was decided to expand the sample of interviewees as this was the final round of the research.

Recruitment of providers involved an introductory email and a follow up telephone call to identify a relevant member of staff who could be invited to participate. The majority of people who gave an interview held a management position within their organisation. A total of 55 providers 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 achieved was:

Six providers offering residential care

Four providers offering domiciliary care

Four providers offering day care services

Three providers of advocacy, support and information

A 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 the study - in order to track change over time - this proved very difficult, with only one provider conducting a follow-up interview. In the majority of cases this was because the person previously interviewed had moved on from the post and a substitute interviewee was not able to be put forward.

In terms of the way that different types of providers responded to the invitation, as in round 2 providers offering day centre services proved particularly difficult to recruit to the study; on being contacted members of staff from this provider group typically said that they had no clients on a Personal Budget and little awareness and or views about the roll out of Personal Budgets in the County.

1.3 Reading this report

Understanding 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 the impact of Personal Budgets on service users and their families.

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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 changed throughout the report.

1.4 Acknowledgements

We would like to thank all of the service users and their relatives who generously gave their time to be interviewed as part of this study, and the valuable contribution they have each made.

We would also like to thank the service providers who gave their time for telephone interviews 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 has been greatly appreciated.

And finally, we would like to acknowledge the contributions of the wider projects teams at both OPM and ecdp for contributions to this important research.

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2. Key findings to date

The first round of research was conducted in November 2009, at which time many individuals in our service user sample had yet to start receiving their Personal Budgets and accessing their chosen services. Therefore, many of the findings from the first round of the study relate to the process of setting up Personal Budgets in place at that time. Below is a summary of the 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 our sample had been receiving services for at least a year in most cases and so it was possible to explore in far greater depth the lived experience of managing and receiving services via Personal 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.

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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 now been purchasing services for at least two years and a large number have had a formal review.

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3. How Personal Budgets are being spent

In this section we provide a description of the range of services that are being purchased and providers that are being engaged by service users and their families. In particular we highlight the differences in the pattern of service consumption by the different service user groups. In Section 3.3 we also identify any observed differences in the pattern of service consumption since round two of the research.

3.1 Range of services purchased with Personal Budgets

Service users and their families purchase a wide range of services and products with their Personal Budgets. For the purpose of analysis, these have been grouped into 5 broad categories: (i) social care, (ii) leisure, personal development and domestic help, (iii) access and equipment, (iv) health services and (v) information and brokerage.

The table below provides a snapshot of the types of services being purchased by the different service users groups.

Type of service

Example of service

Older service users (N=10)

Service users with PSI (N=11)

Service users with LD (N=8)

All service users (N=29)

Social care Personal care, respite care

9 7 6 22

Leisure, personal development and domestic help

PA support, help around the house, trips and activities

2 8 7 17

Access and equipment

Transport, health equipment

1 4 4 9

Health services

Physiotherapist 1 2 0 3

Information and brokerage

Advocacy, advice and support

0 0 0 0

ecdp pass Payroll support, accounts handling

3 3 2 8

It appears that although service users were most likely to be spending their Personal Budget on purchasing traditional social care services, there were also a large number of service users purchasing leisure, personal development and domestic help services. The number of service users spending their Personal Budgets on traditional social care appears to have

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risen since last year. However, this does not reflect a change in the way Personal Budgets are being spent, but rather is a result of the change in the sample of service users that were included in the study.

A number of service users were also using Personal Budgets to support the care they receive through the purchase of equipment or access to transport. On the other hand, as in round 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 personal assistants (PAs) – to manage their Personal Budgets. All of them viewed the service provided by ecdp pass as a very valuable service and instrumental in making Personal Budgets an attractive option for service users (see Section 5.2.1 – The role of the local market – for further discussion about this).

(i) Social care

Examples: Carers or PAs for personal care, respite care, day care centres

As illustrated in the table above, the majority of service users tend to use their Personal Budgets on traditional social care services. As in round two of the research, older service users were most likely to be spending the majority of their Personal Budgets on purchasing traditional social care services. A number of these service users believed that Personal Budgets were in fact only meant to be spent on purchasing such services, although some would 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 daily tasks such as personal hygiene and nutrition. Again, older service users were most likely to be purchasing these services and tended to contract carers from care agencies to provide these services. Service users across the different groups also often spent a part of their Personal Budgets on visits to day care centres a few times a week.

Many service users were also increasingly using their Personal Budgets to purchase respite services in order to give family members the opportunity to take a break or go on holiday. For older service users this tends to include either sit-in services for a few hours during the week so that family members are able to run errands or participate in leisure activities. It also often includes 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 often includes 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 to prepare the service user for independent living.

As in round two of the research, respite services were seldom mentioned by service users with physical or sensory impairments.

(ii) Leisure, personal development and domestic help

Examples: PA support, leisure activities, cleaners and gardeners

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A number of service users with learning disabilities or physical or sensory impairments were spending their Personal Budgets on purchasing services focused on leisure and personal development. 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 services to support broader wellbeing and promote independence. PAs often help service users with daily tasks such as cooking, running errands and shopping or accompanying them on leisure trips 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 Personal Budgets on leisure and personal development. However, some do spend a small portion on domestic help such as cleaners and gardeners.

(iii) Access and equipment

Examples: transport, miscellaneous products and equipment

Some service users with learning disabilities and one older service user were using a portion of their Personal Budgets to cover the cost of transport to and from day centres or leisure activities. On the other hand, some service users with physical or sensory impairments were often purchasing one off products such as special needs shoes, heating pads, a wheelchair or a subscription to ‘PA pool’. These types of products or equipments were viewed by these service users as complementing the other services they purchase with their Personal Budgets.

(iv) Health services

A small number of service users were spending a portion of their Personal Budgets on securing physiotherapy sessions. Two of these are service users with physical or sensory impairments who had a stroke at a relatively young age and strongly feel that physiotherapy sessions have greatly helped improve their health outcomes. Both service users noted that traditional 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 brokerage

No service users were currently spending their Personal Budgets on information and brokerage support to help them manage their Personal Budgets. At the same time, a number of service users reported that they would appreciate more advice and information relating to how they could spend their Personal Budgets and identifying high quality providers in their local area. Some also felt that they would like more support in managing providers, for example, in situations when providers chose to increase their rates.

3.2 Range of providers employed

Service 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

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compared to round 2 of the research, although there has been some increase in the number of service users with learning disabilities that are contracting PA support from freelance individuals which could indicate a gap in the market (see Section 5.2.1 – The role of the local market – for further discussion).

In the sections below we discuss the differences in the types of providers being employed by the different service user groups.

Older service users

The majority of older service users were spending most of their Personal Budget on traditional social care services. In general, they were least likely to be employing freelance individuals, and more specifically, family or friends to provide services. They tended to contract private care agencies to provide daily personal care or sit-in respite services. A minority are also purchasing services from freelance individuals. For example, one service user is employing a PA to provide daily personal care and another is purchasing PA support to help promote independence. In the case of the latter, the service user’s god daughter has been employed as the PA. Other freelance individuals were employed to help service users with domestic tasks and include cleaners and gardeners. Only one service user purchases leisure opportunities, such as trips to the theatre, from commercial organisations.

PSI service users

Whereas older service users tend to purchase social care services from private care agencies, there is greater variability in the types of providers being employed by service users with physical or sensory impairments for these services. Although some service users do purchase social care services from private care agencies, there are many others that employ 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 be employing 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 high quality and consistent support that is provided by a known and trusted individual. For example, some employ PAs, who are also at times family or friends, to help promote independence and support personal development activities. One service user was also employing physiotherapists that are part of his social network. However, there is one service user that was purchasing PA support to help promote independence from a private PA agency and was very happy with the quality of the staff.

Given that service users with physical or sensory impairments were most likely to be purchasing leisure opportunities, they also use a range of commercial organisations, such as gyms, golf clubs and football clubs, from which to purchase these services.

LD service users

This service user group purchases services from a mix of private agencies and freelance individuals, including family and friends. Private PA agencies and freelance PAs were often used to either provide daily personal care or support to participate in leisure and personal development activities. Additionally, in some cases where the market has failed family members were being employed to provide personal care and support for leisure activities.

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Service users as direct employers

Only two service users were directly employing PAs to provide help with personal care and support with leisure activities, and both were service users with learning disabilities. This reflects the fact that few service users are willing to take on the responsibilities associated with employment law and associated issues like tax and holiday allowances. When service users do employ freelance individuals, they tend to pass on responsibility for administration to the provider or in the case of family and friends, pay them directly and let them take responsibility for tax payments etc.

The role of voluntary and community sector (VCS) providers

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. Instead, they are more aware of the differences between care provided by freelance and individuals and those attached to agencies or organisations.

Risk and safeguarding

Although a considerable number of service users are purchasing services from freelance individuals, including family and friends, 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, or to whom they are well matched and have the potential to get on with. On the other hand, front line staff and providers continue to be very concerned about the risks associated with service users employing staff that are not regulated and in some cases not even CRB checked. (To read more about the perspective of front line staff and practitioners see Chapters 6 and 7 respectively.)

3.3 Change in services purchased and providers employed

Change in services purchased

Approximately one third of service users have changed the services that they have been purchasing over the last year. This reflects a change since round two of the research where very 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 they received or started purchasing new services (e.g. physiotherapy) because their health had deteriorated over the last year.

In three of these cases, the change came about as a result of health needs being reassessed during the review. Another two service users (one older service user and one with a physical or sensory impairment) have scaled back the services they are purchasing because of their improved health. One has scaled back on daily personal care and another

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has scaled back on PA support. In fact, the latter is considering coming off Personal Budgets as a result of his improved health. Another service user with a physical or sensory impairment has scaled back the number and range of leisure activities purchased with the Personal Budget as a result of not enjoying them anymore.

Additionally, one service user with a learning disability, whose Personal Budget used to pay for further education, has stopped attending college because he felt that the activities and classes in the special needs classes he was required to attend were no longer suited to his abilities 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… you're 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. For example, following the review, one service user with learning disabilities saw his Personal Budget increase to cover respite care for while his family goes on holiday as well as an increase 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 the reviewer felt that the amount of payment was in excess of what the service user needed or had been spending over the last year. This decrease in Personal Budgets mostly resulted in service users purchasing fewer leisure and personal development activities. In one case the service user felt this change reflected her needs and wants, whereas in the other case the service user was disappointed that the Personal Budget had fallen.

Although the majority of service users have not changed the services they are purchasing because they feel that the services they received are sufficient in meeting their needs, there are a few older service users whose health had deteriorated significantly over the last year and feel that there needs to be an increase in the services they purchase, and therefore in the amount of Personal Budget they receive. However, these service users have not yet had a review so have not been able to discuss their changing health and social care needs with anyone.

Change in providers engaged

A little less than a third of service users have changed the providers that they engage 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.

As in round two of the research, service users with learning disabilities have changed the PAs that they employ to support them with leisure activities and personal development. For some this has meant changing from one freelance PA to another freelance PA, whereas for others it has meant changing from one PA agency to another PA agency. For one service user this change was a result of not being able to find reliable PAs who are willing to commit to providing care without having their transport covered. Another service user changed PA agencies, because there was no consistency in the PAs sent by the first agency and because they were often likely to cancel at the last minute which meant that the service user

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was unable to leave the house that day. Another service user with autism changed PA agencies because he and his parents felt that the PAs sent by the first agency did not have the 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 provide high 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 impairment also reported having changed the private care agencies that they employ to provide daily personal care. This was often due to problems and mistakes with invoicing, a lack of consistency in the carers that were sent by the agency or because of the carers coming at inconvenient and inflexible times:

“They were coming like you know, sort of like six o'clock to put him to bed, sort of coming at 11 o'clock in the morning. Well he had no life. You couldn't do anything. I mean, we like to go out.” (Wife of older service user)

Informing the council about changes

Participants generally tend to feel that they would not need to tell the council if they decided to change the providers they are using. They recognised that the purpose of Personal Budgets is to give them the freedom and choice to employ whomever they like:

“As far as I know I'd 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 they're trying to get away from.” (PSI service user)

However, there are mixed views about whether service users would need to tell the council about making changes to the services they are purchasing. Some service users, particularly those that are spending their Personal Budgets primarily on leisure and personal development, again feel that Personal Budgets provides service users with the choice to spend 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 before making any changes to the services that they purchase whereas some reported that they were unsure about whether they would need to tell the council.

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4. Impact of Personal Budgets on service users and families

One of the main aims of this study is to capture the impact of Personal Budgets on the lives of the people who are using them, and their families.

The section below discussed the range of impacts of Personal Budgets on the people who are using them and their families. This includes positive and adverse impacts on people’s lives and involves looking beyond narrowly fixed social care outcomes, to wider impact on people’s lives.

4.1 Positive impact

In the current round of interviews, service users included in the sample had been receiving Personal Budgets for just over two years. A number and range of outcomes were identified in the first and second round of the research, and in the current round a greater number of outcomes 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 have indicated 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 control

Increased choice and control over providers engaged

As in round two of the research, service users and families reported receiving better levels of care, because of the nature of their new, more direct relationship with providers and their greater sense of choice and control over types of services and providers.

In round three of the research, many service users and their relatives had exercised increased choice and control over the providers they employ to provide their care. As in round two, the outcome of this was to purchase care which better meets their needs, is of a better quality and which they are more satisfied with.

The increased choice to make decisions about who delivers care was described as the ‘best thing 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 I'm not just a number." (Service user with PSI)

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For a number of service users, having increased choice specifically means that they are able to employ a friend, another individual with who the service user has a personal and trusting relationship, or a family member. 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. Having a PA or carer who was liked and the service user felt comfortable with was found to be important across service user groups but particularly amongst service users with complex or specialist needs, where receiving care from someone the 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 her carer, and this had benefits as he knew how to communicate with her. Having a consistent carer who understands her needs has meant that this service user is more happy and content and this has improved quality of life for the whole family. This was also the case for another 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, I've tried other people but it isn't working. So I've got to use my other daughter because she listens to her, she's strong with her, she knows her, she's 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 change providers if they are not happy with the quality of care being delivered. They described a number of instances where they had changed care agencies or PAs because they had become 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 it's 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 and control 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 final round of research, service users’ responses indicated that the concepts have now become embedded into their understanding of how Personal Budgets empower people to become direct employers.

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Access to consistent, flexible or personalised care

As in round two of the research, for some service users, increased choice means being able to get consistent care, that is, to ensure that it is the same carers or PAs that provide care every day. Whilst consistent care was considered important across service user groups, it was specifically important for service users with challenging behaviour, where it was particularly 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 Personal Budget 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 I'm really happy that I have a Personal Budget for my mother. It's worked well." (Daughter of older service user)

Round two of the research also identified that for some service users, an impact of Personal Budgets was purchasing more tailored and flexible support. This round also found that choice over what care to purchase can also relate to having greater flexibility in when care is delivered. For example, if a service user can choose care which is flexible, it means care can be fit into other aspects of daily life instead of ‘normal life’ being determined by visits from carers. This is particularly important for PSI service users who are trying to lead active lives or who have family responsibilities.

"I get to choose who, where and what. I wasn't comfortable when we had the lady coming in, putting me to bed at 6 and getting me up at 9, I'm 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 I'm 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 suits their needs. The impact of this has been improving the quality of care received. For example, one service user has used Personal Budgets to employ a PA to deliver personal care and this has meant that he no longer has to rely on relatives to provide this care. This has resulted in the service user receiving an appropriate type and level of care which the service user’s relatives did not feel they could offer him. In this instance, the Personal Budget has been used to purchase a better quality of care and also has freed up relatives from having a caring role in his life, which has impacted positively on relationships between family members.

4.1.2 Improved wellbeing, living a fuller life

In round two of the research, Personal Budgets were identified as a platform for service users to pursue interests of their own, and gain greater personal fulfilment. Similarly in this

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round, 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. As one service user commented:

"The [Personal Budgets] have given us the opportunity to get people to help us to live." (PSI service user)

In round two of the research, impacts of Personal Budgets were identified to be a decreased sense of isolation and greater opportunities for friendships and access to wider social networks. Similar to this, in round three, for many service users the Personal Budgets were seen to provide the opportunity for service users to get out of the house and interact and socialise with other people. As the quote below illustrates, the impact of pursuing these activities was increased well being and happiness:

"She does get fed up, so I think it's made a big impact for her to go out and she meets – she sees people and she’s on the bus with two boys, the twins, she's known them for 18 years and a lot of the people at Crossroads and EcoWings, she went to school with. So I think it's nice for her to have her own friends." (Mother of service user with LD)

For others, Personal Budgets have enabled them to be able to go out and participate in activities they enjoy. As the quotes below indicate service users and their family members recognised that without Personal Budgets, they may well have been constrained and isolated to their houses:

"It’s been such a life changing experience for dad, because of going to the gym and having the space to go out and do golf. It put him back out in to the community again and it's given him a life back. It's the freedom that it's allowed, instead of him being stuck in that chair morning, noon, and night." (Daughter of PSI service user)

“It's quite easy for her to sit around doing absolutely nothing but I want her to go out and do things and experience stuff and she seems happy with it, so I'm hoping I'm doing the right thing.” (Mother of service user with LD)

“Well I’d be very bored because like I said, I’d be just stuck with the TV, you know, the TV and radio." (PSI service user)

This outcome was found particularly amongst PSI or LD service users who were more likely to use their Personal Budgets to purchase leisure and personal development activities or a PA to accompany them on such activities (see Section 3.1 for further discussion on how service users spend their Personal Budgets).

4.1.3 Increased independence and dignity for service users

Independence and freedom

In round two of the research, Personal Budgets were identified as providing a greater sense of independence, through the types of services and activities which supported greater independence. In round three of the research, many service users and their family members also felt that services purchased through the Personal Budgets enabled a greater sense of independence for service users. This was more likely to be the case for service users with

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physical or sensory impairments. According to these service users, 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 or these tasks:

“Even she would take him out and buy a birthday present for my mum when it was my mum’s birthday or Christmas or whatever, whereas he wouldn’t have been able to do that.” (Daughter of PSI service user)

Another service user described how before he had been on a Personal Budget he had been living with his elderly parents who had been responsible for his care. The Personal Budget had allowed him to move into a place of his own and employ a live in PA:

“Having a faithful retainer at my side has made every difference. It means I have a life! … Over the last couple of years and I'm still even coming to terms with that, to being able to do things I wouldn’t have contemplated, so it is literally every difference in the world.” (PSI service user)

In some cases, the support provided by paid carers or PAs encouraged service users to be independent by encouraging the service user to do activities for themselves and to develop their confidence. For one PSI service user, by PAs taking her to the supermarket and encouraging her confidence, she is now able to go shopping on her own. Carers supporting independence was also an outcome amongst a few older service users receiving personal care:

"The carers don’t do everything for you, they encourage you, so it is all part of their enablement plan.They re-enable that person to live a fuller life." (Husband of older service user)

Dignity and respect

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 example, one service user’s husband related how he felt it was very important that his wife receive personal care from another woman, rather than from him:

"Well, as a man dealing with a woman, I find it not the sort of thing I want to do, but when a woman comes in and deals with another woman it's totally different, it's on a same level basis. I feel that that is the right way to be." (Husband of older service user)

Additionally, some service users with physical or sensory impairments also felt that it was important Personal Budgets had meant that they did not have to rely on family members for running personal errands:

"To go shopping with my friend instead of having to go with my husband and him walking around the ladies underwear sections." (PSI service user)

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4.1.4 Increased confidence, self esteem and sense of empowerment

As indicated above, some service users experienced increased confidence and self esteem as result of the care or activities they purchased with their Personal Budget. This echoes findings from round two of the research where service users and their families noted a difference between their levels of self esteem before and after receiving tailored services via Personal Budgets. In this round of the research, increased self esteem and confidence arose in a variety of ways across all service user groups. 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. For one PSI service user, the increase in confidence came about through employing a friend as a PA, who encourages her to do some activities for herself. Her husband described it as:

"It's helped her come out more and try harder, in the sense of to do things even though she is ill, and her friend helps her and gives her more confidence." (Husband of PSI service user)

On the other hand, for some older service users having the choice to purchase care they felt satisfied with created a sense of empowerment. Additionally, for these service users increased confidence and self esteem was also a result of developing positive relationships with providers. This is illustrated particularly by one older service user who described how she had always tended to be very shy but how she had positive relationships with her carers, who she counted as friends and who she felt comfortable with.

"Those ladies, they stimulate her mentally. There's always some interesting thing that they come out with, something about their family or whatever." (Husband of older service users)

A number of service users with physical or sensory impairments also described how being able to self manage Personal Budgets and deal with providers directly had given them a sense of empowerment. For example, one service user commented on how the agency he uses treat him like an employer rather than ‘like they’re doing me a favour’. Another service user described how she felt empowered at being able to pay her friend to be her PA

"Because don’t get me wrong, she would have done it without the money, but from my point of view I don’t feel like I'm depending on her, because it's just extra money for her and she enjoys it... I can sit and watch her cook dinner, I don’t have to feel bad because she's doing my housework. (PSI service user)

4.1.5 Improved physical health

As in round two of the research, the activities and care purchased through Personal Budgets have had a substantial impact on physical health for a number of service users. This outcome was particularly evidenced amongst PSI service users.

For some, the impact of the Personal Budgets has been increased mobility and being able to stop using a wheelchair, through using the Personal Budget to purchase services such as swimming or using a gym. For one of these service users, the physical change is so marked

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he has stopped employing a PA and thinks he will be in a position to stop using his Personal Budget. His daughter described his change in health:

“He is physically better and he can put his leg brace on and go for a walk now whereas before he couldn’t because he was in a wheelchair." (Daughter of PSI service user)

For another PSI service user, using Personal Budgets to purchase physiotherapy four times a week has resulted in a tangible improvement to his physical health, which was described by his relative as ‘amazing’:

“From where he was when he came out to hospital, to where he is now, everybody says that his improvement physically is amazing, although you know, he still can’t walk very far and so on and you can’t drive or whatever. But without having the wherewithal to pay for all this support, then he wouldn’t be where he is now.” (Wife of PSI service user)

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.

4.1.6 Improved emotional well being of relatives

Greater independence and freedom

In addition to the impacts of improved support for the whole family and improved family relationships which were identified in round two of the research, in the current round, Personal Budgets played a big role in improving the emotional well being of service users’ family members. This was across all service user groups. 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. As one service user’s mother commented:

“It's made us a bit more independent and even now we could actually, if we wanted, jump in the car and go out for lunch because I know that Daniel won’t be home until 4pm... Near Christmas we've been asked out Sundays for lunch and over to people’s houses and in that case all I need to do is ring up one of the carers and say look, would you be available to take Daniel out this Sunday... So it has made a big difference in our life, definitely, which goes to lifting some of the stress that I've been feeling in the past couple of years really." (Mother of service user with LD)

Similarly, for one older service user who was described as having challenging behaviour by the relative interviewed, the extra care purchased by Personal Budgets meant that the service users’ husband was able to get out into the garden when the carer was there. As their daughter commented:

“I think that the extra money has helped because it's given mum extra care time, so my dad is 87 and it has helped with him having more time to himself when she has got care, because she's so controlling that she doesn’t even like him going out in the garden but when he's inside she doesn’t want him there either.”(Daughter of older service user)

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In addition to giving service user’s family members more time to themselves during their daily lives, Personal Budgets have also enabled many to be able to plan for holidays.

“I think the big thing in the last year is that you know, if I have needed to go away for a weekend and I did manage three or four days skiing in January, then I can pay for somebody to come in and be with David at night time and so on.” (Wife of PSI service user)

One service user’s wife has also been able to take up part time employment because they have been able to employ the service user’s daughter as his PA:

"It's been brilliant, it's been absolutely brilliant. It allows my mum to get a little job for two days that Lucy came in. It allowed her to get a job and so it gave her freedom from not just being with my dad the whole time.” (Daughter of PSI service user)

‘Peace of mind’

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. For many, this was a result of knowing that their relatives are happy with the care they are receiving or participating in activities which they enjoy. For example, the parents of one LD service user, who uses the Personal Budget to attend a day centre, told us how happy they are to see their daughter attend a day centre that she enjoys and where she is settled. They were very worried when she left college about how she would spend her time, and using the Personal Budget to pay for the day centre has eased that concern.

For other service users’ family members, the ‘peace of mind’ was associated with the eased financial burden that they experienced as a result of the support and care they were able to buy with Personal Budgets:

"From my point of view it gives me peace of mind, because I don’t have to wonder how I could finance it because I'm on a limited amount, because even though I get an occupational pension, which is quite generous, this place costs quite a bit to run." (Husband of older service user)

“That has just taken so much of the load off of me, because I was you know, working all hours to finance what Alan had or is – was having before, which I was able to pass some of that – those responsibilities on to this Personal Budget." (Wife of PSI service user)

Using a Personal Budget to purchase care or to use as respite can also help to ease the stress and burden on relatives by helping them to feel supported in their role as primary carer. The husband of a PSI service user told us how he had become depressed after his wife became disabled and the care purchased through the Personal Budget has improved his emotional well being:

"It’s made a big difference, in my health for a start. The sense that not being alone anymore has been a god send to me, my health, and being able to actually go out on my own without having to worry, stress, consider, or be back by, or do this by, or – I have actually got a couple of days now which are mine. And man is that nice!" (Husband of PSI service user)

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4.2 Adverse impact

A number of adverse impacts were identified by service users and their relatives in the current round of interviews. The factors which contribute to these adverse impacts are discussed in Chapter 5.

4.2.1 Uncertainty and lack of clarity about the Personal Budget

The second round of research identified a number of areas which resulted in stress, anxiety and uncertainty as a result of managing the Personal Budget. Users typically made the point that the lack of clarity in the terms and conditions attached to the Personal Budget could make receiving a Personal Budget a particularly stressful and uncertain time for the service users.

Related to this, in the third round of research, a number of those responsible for managing the Personal Budget expressed uncertainty and a lack of clarity about how Personal Budgets could be used. Similar to findings from round two, in some cases, this was exacerbated by difficulties in getting in touch with the council when service users and relatives needed support and guidance.

For some service users and relatives uncertainty related to not knowing about the types of providers that could be employed to provide services. For example, whilst some service users are employing relatives as PAs or carers, others are not because they are not sure if they are allowed to do so. However, they do feel they should be able to do so. This was an uncertainty for parents of LD service users and was particularly frustrating when there were issues for finding a suitable and consistent PA or where service users had complex or challenging needs.

Other service users were unsure about the range of services that they are able to purchase with their Personal Budgets. More specifically, they were unclear about whether they were able to exercise flexibility in how they spent their Personal Budgets from what was specified in their original support plan. Some reported having received conflicting information from different social workers about this.

"More guidelines and more flexibility of what you can spend it on, for instance okay, we want respite, we know that but it would be nice if it could be spent on some activities with parents" (Mother of service user with LD)

"I would just like to have more information about what I could, or could not spend the money on. That is the only thing." (Husband of older service user)

Other service users expressed uncertainty about any surplus which may have built up in their Personal Budget accounts due to care needs and costs varying over different months. Some service users felt they were not allowed to build up a surplus and others had received conflicting messages about how a surplus could be used. As these examples indicate, conflicting messages delivered by different social workers is exacerbating some service users’ confusion as to what they can spend their Personal Budgets on.

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It therefore appears that although service users have now been receiving Personal Budgets for approximately two years, many feel that they continue to be unclear about the processes associated with Personal Budgets. In particular, the fact that service users continue to get conflicting messages from front line staff and that there has been no published guidance on how they can spend their Personal Budgets has contributed to this continuing lack of clarity.

4.2.2 Stress, anxiety and frustration

Financial burden

In round two of the research, interviewees reported the high levels of stress and anxiety associated with managing a Personal Budget, either for themselves or their relative. In the current round, this stress, anxiety and frustration associated with managing or receiving a Personal Budget was still apparent. In line with findings from round 2, this stress was associated with the extra financial burden that arises when the Personal Budget stops unexpectedly (for example, if the service user is admitted to hospital for a short period of time), when there are delays in receiving the Personal Budgets, either initially when the Personal Budget is set up or following a change of circumstances or a review, or when the Personal Budget received does not match what the service user expected through their review (To read more about service users experiences of review see Section 5.2.3 – ECC processes). These issues arose across the service user groups interviewed. Those managing the Personal Budgets can be left in a situation where they cannot purchase services they need or may have to cover the cost of care themselves. This is particularly stressful depending on the level of resources available to the service user or relative. For example, one relative of a service user did not have a contingency and was not being given adequate money to cover care. However, because a surplus had accumulated they were able to pay for the extra care that was times needed.

“Sometimes the carer had to do an extra hour, for example if they went out for the day, the taxi didn’t arrive or there were times when my dad wasn't in the house and mum needed some personal care and there might have been an extra hour. I used to say “But mum you know that the carer finishes at 4, you can’t ask her to do anything else, that's not what the money is for” and so she was getting worried about it that there wasn’t enough money. So it caused an anxiety.”

Delays associated with systems and processes

Stress and anxiety was often associated with delays in a revised Personal Budget being approved following a review or a change in circumstances. As illustrated by the quote below, 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.

“Every time I got on to the phone to social services they gave me someone else to speak to so I had to go through it again… I was phoning up and crying with temper, I was so angry!" (Mother of service user with LD)

Some service users’ relatives stressed that while receiving the Personal Budget was associated with many positive impacts, it was the process of getting Personal Budgets instated initially which caused a great deal of stress.

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For some service users the 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. These service users tend to think that the stress and anxiety is worth it in the long run and advise people ‘just to stick it out. It does get easier.’ On the other hand, there are a number of service users who continue to experience stress and anxiety associated with delays after the set-up phase, for example in trying to schedule reviews.

Additional burden of care

Round two of the research identified that in some cases, the Personal Budget was leaving service user and families without an adequate level of care, which left families and friends of service users with an additional burden of care. This theme also emerged in round three of the research. For some service users, delays in Personal Budgets caused family members to be unable to book or take their respite, particularly when they are in need of a break. For one relative, delays in receiving the Personal Budget meant they he was unable to take a trip he had planned and for another relative, it took six months from the point of the review for the revised Personal Budget including money for respite to be received, which meant that this relative was unable to book any respite for 6 months.

Changing health needs

Stress and anxiety also arise from Personal Budgets not being responsive to changing care needs, and therefore not meeting health needs, and this was common amongst older service users. Again, this left families and friends of the service users with an additional burden of care. Personal Budgets may not be responsive to health needs if a service user is waiting for a review or cannot get in touch with the council to organise their review. One service user had not had a review but needed one because her health had deteriorated in the past year, and her husband, who also had ill health, was struggling to give her the help she needed, and sometimes had to use their personal resources to pay for extra care. This situation was not sustainable as the husband commented:

"I reckon by the end of this year she's going to have to go in to a residential home - because I just can’t cope with it.” (Husband of older service user)

These findings indicate that there are lessons to be learned about improving the processes associated with Personal Budgets so that they are more responsive to people with fluctuating conditions and to people whose conditions often deteriorate, as was the case in our sample.

Lack of suitable provision

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, whilst Personal Budgets were seen positively, the impact of them was limited because relatives did not feel they could find providers who were able to deliver the appropriate support or care for their relatives. They found the process of experimenting with different provision to be very stressful.

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"There’s no kind of adequate services, you know, he needs to be in a specialist autism place where they can understand his needs." (Mother of service user with LD)

The mother of one service user with learning disabilities had been through several PAs for her son. She felt that the PAs were often students or had their own care responsibilities for children or relatives which made them unreliable. She also felt that an issue with employing a PA was in trying to purchase small hours of care, when the Personal Budget did not cover travel costs for the PA which meant that it was not worth the PA’s while to pay for travel for one hour’s work. In some cases, frustration with finding suitable provision was exacerbated by a perceived lack of support and guidance from the council.

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5. Explaining the impact on service users and their families

A key aim of this study is to identify how and why the outcomes discussed in the previous section have been achieved.

In the following sections we draw on our conceptual framework to discuss the role of six key factors in influencing the impact of Personal Budgets on service users and their families. This includes the role of personal resources, including family and social networks, financial resources and skills and knowledge; and the role of external factors, including the local market, frontline staff and ECC processes.

5.1 Personal resources

5.1.1 Family and social networks

Service users’ families and social networks continue to be an important part of determining the type and magnitude of impact of Personal Budgets. Of the 29 service users that took part in this round of the research, only 5 were managing the Personal Budgets themselves. This tended primarily to be service users with physical or sensory impairments. For the majority of

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service users, Personal Budgets are being managed by a family member. Service users with learning disabilities in our sample all had their Personal Budgets managed by a parent whereas older service users and those with physical or sensory impairments tend to have their Personal Budgets managed either by a partner or a child. As reported in round two of the research, a number of service users noted that older people who did not have a family member who was able to take responsibility for the management of the Personal Budget would find the additional administrative burden quite difficult and that this in fact would make them less willing to opt for self managed Personal Budgets.

Service users also at times spend a significant part of their Personal Budgets on employing family or friends directly to provide care (see Chapter 3 to read more about how Personal Budgets are being spent). For example, one service user with a learning disability has been able to directly employ her step father to be her full time carer and another service user with a physical or sensory impairment has been able to employ his daughter as his PA. Similarly, another service user has been able to employ a close friend to be her PA. 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, because, for example as PAs they tend to go over and above what is expected of them:

"Because she's a friend as well and if we need her then she will come. She does lots more than what is essential to do, but that's down to her, you know." (PSI service user)

Additionally, a number of service users are also employing people from their wider social or neighbourhood network as PAs or carers. For many, feeling comfortable and being familiar with the people that are employed to provide their care is an important part of receiving Personal Budgets.

On the other hand, as in round two of the research, there are also a small number of service users whose family members or friends are involved in providing care where the Personal Budget is not meeting their needs. This inevitably results in an additional burden of care for family members. In some cases, this may be because the quality of care that service users are receiving is not up to par coupled with a shortage of available providers to choose from and therefore family members often step in to assist carers or PAs. In other cases, this is because the Personal Budget that was calculated at the set-up stage is not enough to meet the service users care needs. One service user felt that because they were employing a family member to directly provide care, the Personal Budget they had been given had been less than what they would have been given if they were going to employ an independent carer.

“It's kind of because we’re her parents and we’re here regardless, it is kind of like a duty as such but that doesn’t really seem very fair because Chloe needs 24 hour care and in the review notes that we had it said Chloe needs an awful lot of care.”

A number of service users also draw on family and friends for support, advice and information relating to Personal Budgets. For example, as in round two of the research, service users often reported employing providers that had been recommended specifically by family members or friends. Sourcing recommendations from family and friends meant that service users were likely to be very satisfied with their providers and the quality of care they were receiving.

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"A friend recommended it, because we had tried everywhere and there were lots of places that my daughter and I went to see and we didn’t like." (Wife of older service user)

The family members of some service users with learning disabilities reported often drawing support, advice and tips from a network of other parents of young people with learning disabilities. Additionally, having access to a friend or family member who has worked in health or social care has been particularly helpful for some service users.

“The fact that I’ve been a close friend with Daphne for a long time, who’s been one of the pioneers of the Personal Budget system, so I’ve got a personal friend who I can regularly tap for information if I need it.” (Service user with PSI)

Finally, 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 has become increasingly important in round 3 of the research where health needs have at times escalated or where reviews have been scheduled. It can involve ensuring that the Personal Budget covers the full costs of care needed by service users, or ensuring that the Personal Budget can be spent creatively and in a way that meets broader wellbeing outcomes. One service user’s wife reported how her request for an increase in Personal Budget after her husband’s mobility decreased because of a fall had been denied by a social worker. However, her son and particularly her daughter who works in a special needs school arranged a meeting with the social worker and were able to ensure a revised Personal Budget was put in place. This kind of advocacy and support is particularly useful when service users or those who manage their Personal Budgets do not feel they have the knowledge or confidence needed to effect change:

"The trouble is, I'm a bit of a soft touch, that's the trouble I think and I just accepted it I think.” (Wife of older service user)

These findings indicate that those service users with existing relationships upon which they can draw on for advice, support and at times the direct provision of care are in a better position to be able to make the most of their Personal Budgets than those who do not.

5.1.2 Financial resources

In round two of the research service users and their families were drawing on their own financial resources to supplement their Personal Budgets and this continues to be the case in the third round of the research. Those that are able to contribute their own resources are

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better able to make the most of their Personal Budgets. A number of service users or their family members reported that they need to 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. Service users felt that the Personal Budget was only enough to cover basic personal care needs and not wider wellbeing and independence or other associated costs. For example, some service users reported that they did not have any personal development or leisure activities built into their support plans and that they therefore had to cover these costs themselves. Other service users report that their Personal Budgets do not cover the transport and travel costs associated with PAs or carers accompanying service users on leisure or other personal development activities. These findings indicate that contributing one’s own finances often allows service users and their families to meet wider wellbeing needs that are not being met by Personal Budgets. This also indicates that there may be lessons to be learnt about the process and manner in which Personal Budgets are calculated.

"We've always said we would pay extra for the transport if she was going out, if she – you know, if they took them somewhere, they go to Peter Pan’s down the seafront, and I don’t mind, I would give her the extra money myself." (Mother of service user with LD)

In round two of the research, service users and their families had to draw on their own financial resources because of delays associated with panel approval and waiting for the first payment to be made. In round three of the research, it is the delays associated with reviews or problems with others aspects of the Personal Budget system that mean service users need to use their own financial resources. For some this has been because of the time taken for a revised Personal Budget to be approved after a review and for others it has been because health needs have worsened but a review has yet to be arranged. Another service user’s Personal Budget stopped because she was admitted to hospital and it took a long time for it to restart once she has left hospital which meant that her son had to cover the costs of her care in the interim. However, it is important to note that the large majority do not have the financial resources necessary to cover such costs and therefore suffer greatly due to such delays.

Having sufficient financial resources has also meant that some service users have greater flexibility in how they spend their Personal Budgets. For example, it can mean that they can spend more in some months on ‘big ticket’ items like a holiday, by supplementing the Personal Budget with their own money and then reclaim this money the next month.

In a small number of cases service users also use their own financial resources to supplement the care that they receive. For example, one service user has a live in PA the costs of which are only partially covered by the Personal Budget. His daughter covers the remainder of the cost as it gives her greater peace of mind to know that her father has help around the clock if he should need it. Other service users reported spending their own money on one off items such as exercise machines or on complementary services such as dieticians.

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5.1.3 Skills and knowledge

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. These skills were felt to be particularly important by the family members of service users with learning disabilities and with respect to communicating with ECC. As one service user commented:

"I don’t like to say it, but it is the people that shout the loudest and the hardest that get seen first." (Mother of service user with LD)

Some felt that 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. For example, one service user’s family member described how she has had to be ‘assertive’ and ‘pushy’ in her communication with ECC in order to convince them of the need to increase the Personal Budget:

“If I wasn't one of these people that couldn't speak up for Chloe I don't know where we'd be, I really don't know.” (Mother of service user with LD)

Other service users felt that being confident and articulate was particularly important in ensuring that they were able to use their Personal Budgets flexibly and creatively, for example by paying a family member or friend to provide care. Being confident, persistent and assertive was also felt to be extremely important when dealing with delays associated with Personal Budgets, for example with regards to delays in revised Personal Budgets being approved after a review. One older service user’s daughter commented that it was important to ‘be on people’s case’ because she recognised that staff at ECC were inundated with work and that paperwork often gets shelved. Another service user’s parents reported that they have had to rely on their own determination and persistence to get the cash flow problems addressed.

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. These findings indicate that those service users that are more confident and assertive are better able to exercise choice and control in relation to their Personal Budgets (to read more about choice and control see Section 4.1 on the positive impact of Personal Budgets.) In fact, the lack of confidence on the part of one older service user has meant that she shies away

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from contacting the council about increasing her Personal Budget for fear that she will lose what she is already receiving.

A large number of 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, some felt that their previous experience of managing finances and Personal Budgets either in employment or as part of running their own businesses had been beneficial:

"It's no problem to me. I've managed much bigger budgets than this." (Husband of older service user)

"See Emma used to work in the cash office in Morrisons, she was supervisor, so figures and money – if she didn’t have it in her then it would probably be ten times harder." (Husband of PSI service user)

Similarly, others reported that the admin and record keeping tasks associated with managing Personal Budgets were easier because of experience of doing such tasks as part of their jobs. A number also referred to the importance of having the skills necessary to communicate with and manage other people in a professional manner. For example, one service user described having to push back against a social worker who wanted to schedule a review with very little advance notice:

"As a system, it is totally not on and I think if I’d been – I mean I’ve run my own business, I’m not so easily – but you know, if I’d been a little old lady or something and you were told that if you didn’t fit it (the review) in within a few days you might lose this money, that’s not on." (Wife of PSI service user)

Another service user’s family member reported that her own experience of having worked in social services had been an asset in that it had helped her navigate the system, get advice and information and make the most of the Personal Budget:

"I suppose if I didn’t have a social services background I probably wouldn’t have known who to contact when the budget went down.” (Daughter of older service user)

As the previous two quotes demonstrate, many service users recognised that people who have not had previous relevant experience of employment or older people who are less confident would find managing Personal Budgets more difficult.

A small number of service users and their family members also continue to feel, as in round two of the research, that being computer and internet savvy has a role in making Personal Budgets work for them. For example, some regularly use the internet as sources of advice and information about providers. One service user described how the internet has played a big role in meeting his social, domestic and practical information needs:

“In all honesty the internet is my only contact point with the outside world. It’s my social life, it’s my information portal, it’s how I do my shopping, how I do my banking, it’s my personal outlet for all the frustrations of life and that, it’s my creative outlet for the creative side of me. It has become and does become your life. t’s on 24/7 basically.” (PSI service user)

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Other service users reported that being able to use computer programmes for record keeping and administrative work has also been important in managing the Personal Budget. Again, they recognised that older people who are often not very familiar with computers or the internet may struggle to manage Personal Budgets and may therefore need support in making it work.

5.2 External factors

5.2.1 The role of the local market

As in round two of the research, the majority of service users were satisfied with the providers they were employing to deliver care. Many reported having developed very positive and personal relationships with their providers over the years, such that they often considered them friends. Others were happy that the providers were willing to offer flexible and consistent care.

As discussed in Chapter 2, a number of service users also reported having exercised choice and control by changing providers because they were dissatisfied with the care they were receiving. A range of reasons for changing providers were given including: a lack of consistency in carers; carers coming at inappropriate times of the day; carers being late or not turning up; carers not being professional or not delivering appropriate care; and service users not developing a good relationships with carers.

One service user commented that he had started to see an increase in the number of flyers advertising services and that this was how he had found a replacement care agency when he was not satisfied with the carers he had. Some service users also recognised that as direct employers they have greater purchasing power in the market, and that providers will have to be more competitive in the quality of services they provide and will have to ‘up their game’.

Some service users had moved from a private agency to a freelance carer when they were dissatisfied with their care agency. They felt this resulted in: value for money, due to not paying agency fees; a better quality of and more flexible care because they could negotiate directly with providers about what care was required; and also meant they could develop trusting and personal relationships with their carers.

As in round two of the research, some service users had difficulty finding high quality, specialist provision which, as stated previously, could be a source of frustration and anxiety

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for service users and their families. Examples of gaps included: specialist provision for young adults with autism who had left school or college; age appropriate services for PSI service users who were pushed towards services meant for older people and appropriate respite services for LD service users.

"I think it's for young people, when they're at school everything, everyone, you get all the physiotherapy and you get everything, but it's like once they leave school it's like they're in-between, There is nothing, I don’t think, for that in-between, the 20 plus." (Mother of service user with LD)

Some reported that a lack of availability of adequate providers meant that they were forced to employ people that provided substandard care:

“The important thing is [our son], we’re on our toes all the time, watching, monitoring what’s going on, we check things, like you know when he comes back when he’s got his suitcase full of his clothes and half the clothes are missing and you think, “Wow, what happened here then?” So I have to immediately get on the phone and say, “Can I have the rest of his clothes please?” (Father of service user with LD)

There is more detail on the response of the local market to Personal Budgets, in Chapter 6, setting out perceptions from service providers. In addition to a lack of high quality specialist provision, some service users also felt that there were a lack of advice, advocacy and support services in the local area. A number of service users reported that Independent Living Advocacy (ILA) had often been a source of support and advocacy, particularly in a service user’s first year of managing the Personal Budget when ILA had a contract with the council to sit in with new Personal Budget holders and take them through the process. For one service user, the support they received from ILA in the beginning, such as being accompanied on doctor’s appointments, or to meetings with social workers, was a real notable absence after the first year, when this support was not available. Service users tended to feel that there needed to be more such advice and advocacy services.

For some service users, this difficulty in finding high quality specialist provision or advocacy services was a result of not having enough information of the range of providers in their local area. However, other service users felt that the difficulty in finding providers was a result of an actual gap in the market rather than a lack of information about providers. Some service users therefore felt the council should have a greater role in supplying information about high quality services, and this would ease the pressure and stress on relatives of constantly finding out about potential services.

For a number of service users, ecdp pass provided an invaluable service in managing the Personal Budget and paying providers on their behalf. Older service users in particular seemed very positive about the role of ecdp pass in taking the burden of managing the Personal Budget off their hands, one older service user said:

“We’re glad to have [ecdp] pass managing the Personal Budget – it’s quite beyond us, the national insurance etc.” (Husband of older service user)

"Well it takes the weight off of my shoulders, it does really. I've got enough to do without that." (Husband of older service user)

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Whilst the majority of feedback about ecdp pass was positive a few service users and their relatives reported delays in sending invoices and administrative errors. For one couple, errors made in their tax return resulted in HMRC threatening court action, though after some time and effort by the couple this was resolved.

5.2.2 The role of frontline staff

As discussed previously, and as found in round two of the research, many service users expressed great frustration at either not being able to get in touch easily with their social worker when they wanted to, or not having one point of contact who knew their circumstances. A common story amongst interviewees was phoning the council and being told that the person assigned to their case had moved on and then being passed onto another person who either was not available or did not know their case.

"One minute it was one person you had to ring up and then the next time it was another person. You'd ring up and they’d say; ‘oh no they don't do it now’. Well who am I supposed to ring? Who's our social worker now then?"

As in round two of the research, service users keenly felt that having one point of contact is associated with lots of the positive impacts associated with Personal Budgets. In particular, they felt that having one contact meant that they were able to start receiving payments quickly, have a review of one’s needs when necessary, receiving and adequate level of Personal Budget and also being able to access advice and guidance when necessary. Some service users who did have a single point of contact emphasised how important this was for accessing support and advice.

"In the end she allocated Rebecca a social worker and so I had one person to speak to and that helped... when you have just the one person you don’t have to keep going over and over and that did it." (Mother of service user with LD)

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. For example, for one PSI service user not having one consistent person dealing with their case has been the main source of frustration with getting the Personal

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Budget. The service user gets very upset when he has to explain his case over and over again because he does not have one point of contact.

Service users also experienced anxiety and stress they often received conflicting information from different frontline staff, particularly about the range of services that they are able to spend their Personal Budgets on:

"They agreed to him going to stroke club and if he wanted to go to the theatre, they'd pay for a carer to go with him, and for the transport to take there. Then a year after that (the review) and this social worker was like, “I've never seen a Personal Budget like this”... she said “I can't believe it”. We had eight weeks respite; she said: “I've never known anybody get eight weeks respite”... then like we lost the caravan money and things like that." (Wife of older service user)

In line with these comments, many service users and relatives felt they would benefit from more support from the council. Whilst some service users acknowledged that what they appreciated about flexibility and freedom associated with Personal Budgets, they felt that for Personal Budgets to have a positive impact, a level of support and guidance from the council was required, which was not currently being offered. Interviewees suggested a number of areas where they would benefit from more guidance and support including: support in managing providers; a list of approved suppliers; support in writing contracts for PAs and, a card or leaflet with numbers to call if the Personal Budget stops, you have a change of circumstances. One relative of a service user felt keenly more support should be available:

“It seems a bit contrary considering I like the freedom of the Personal Budget but sometimes it can be too much freedom and it seems that as nice as it is to have the freedom and autonomy it's also nice to have a bit of support in the background and sometimes that feels a little bit as though it's too far in the background.” (PSI service user)

Service users had variable experiences with social workers. Some felt their social workers were responsive once they managed to get in touch with them and had stressed they were always there if needed. On the other hand, a few service users felt strongly that social workers were very busy and so they were unable to dedicate much time to service users and their relatives. This created a sense of isolation in managing the Personal Budget amongst service users, particularly once the Personal Budget had been set up. As one service user’s wife commented:

“Social workers are really busy… so you just feel you’re out there on your own really.” (Wife of PSI service user)

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5.2.3 ECC processes

The review

During the third round of research, almost two thirds of service users have had a review of their Personal Budgets. Some of the service users who had not had a review felt they needed one because of needs changing or because of wanting the Personal Budget to be recalculated following a change in circumstances, for example leaving college or school. For example, one service user had not had a review and wanted one because she had broken her leg which impacted on her mobility and so the amount of care she needed. Many of the service users who have had a review had initiated this themselves by contacting the council.

A number of service users were very unclear as to whether it was their responsibility or the council’s to initiate reviews and some felt they should not have to do so (even though they had). For example, one service user has had a review, which was initiated by his daughter. When the daughter contacted the council and initiated the review, which she did because her father’s health had deteriorated and he required more care, the social worker said to her “‘why did you wait so long for a review?”, even though it had not been made clear previously that it was their responsibility to do so. In other cases, service users seem to be waiting for their social worker to initiate a review, even though they desperately need one because of changing health needs.

Service users tended to have different ideas about the purpose of the review. Some felt that the focus of the review was to check up on how they were spending the money, for others it was to make sure they were okay and see whether the care was still meeting their needs and for others it was a mixture of these.

Some service user’s perceptions of the review seem to have been influenced by the current economic climate. Many felt nervous about whether they would continue to receive the money they needed to cover care costs, as they felt there was a lack of money in the system overall. One service user in particular felt that the review she recently experienced was an attempt to ‘claw back’ money, as she got the message (from the council) that some of the initial Personal Budgets had been miscalculated. As such the review seemed to this service user to be focused on financial figures and potential underspend and was not focussed on their well being or needs. In addition, there seems to be a lack of understanding about how Personal Budgets are calculated, which is exacerbated by different social workers delivering contrasting messages, which heightens the fear and nervousness about the review process before it happens. One service user said:

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"Well, because of the situation economically in the country, I was concerned before the review that the Personal Budget would be cut, because the increase that we personally had, was quite dramatic." (Wife of PSI service user)

Service users had varying experiences of the review when they had them. Some service users really appreciated their review, as it made them feel more comfortable about spending their Personal Budgets and provides reassurance that they are “doing it right”. Others particularly appreciated their review when a social worker who had previously done their assessment or review was involved:

"They knew exactly the situation with Daniel and they knew what he was like and they knew how difficult and stressful it could be, so this actual review went better than the first one, in as much as she understood where we were coming from really." (Mother of LD service user)

Conversely, for some service users a negative experience of the review was due to not having a consistent person assigned to the case, and a sense that the social worker did not understand their needs which increased the scope for misunderstandings. Other negative experiences of the review were because service users felt 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. A couple of service users and relatives indicated that it was important to have other relatives along to the review with them, because they felt they did not understand the process and wanted a second opinion on what the social worker decided.

Providing contingency

Only approximately one third of service users were aware of having any contingency worked into their Personal Budget. Those that were aware of having a contingency really valued having an extra pot of money to cover emergency care needs:

"It means that I’m not counting every single penny you see, so it's just like a little pot there, so just for emergencies." (Daughter of older service user)

A number of service users also reported having used their contingencies, for example when a service user’s wife broke her wrist and so needed extra carer help with her husband while it healed. Some service users do have concerns about and are unclear about how contingencies are meant to operate. For example, one service user is concerned that not using the contingency means that it will taken away by the council. Another service user is scared to ask about what it is meant for in case it is taken away:

“I daren’t ask anything in case they dock us and misunderstand what I’m saying.” (Older service user)

On the other hand, when asked about a contingency, many service users 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. As discussed in Chapter 4, many were confused about whether and how they should be spending this surplus. In round two of the research, one service user who did not have a contingency in his Personal Budget had been under-spending on his Personal Budget so that he could create a surplus that would act as a

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contingency fund and that he could use in emergencies. He reported having had to use the money occasionally for personal care needs, such as washing and dressing, late at night or early in the morning:

‘It's important knowing you've got it within your budget that you can do that, without having to sit there thinking, 'Where am I going to find forty quid for this visit?' (PSI service user)

One year on and this service user reports that he had been reprimanded by ECC for spending the money in this way and felt that “they were basically accusing me of stealing it.” Rather than allocating an additional amount for contingency, this service user’s Personal Budget has stayed the same but he has been told that 10% of the Personal Budget is now allocated as a contingency.

Other service users talked about contingency as ‘back up plans’ relating to what they would do if for some reason their carers were unable to provide care or if the Personal Budget was withdrawn for some reason. Some mentioned that they would have to draw on support from family and friends to cover care needs.

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6. Practitioners’ reflections on Personal Budgets

As we have discussed in the previous chapter, frontline staff and ECC processes can play a big role in determining and shaping the impact of Personal Budgets on service users and their families. With this in mind, we conducted a focus group with practitioners who are responsible for delivering Personal Budgets.

The purpose of this part of the research has been to better understand the extent of practitioner support for Personal Budgets, the impact of Personal Budgets on their role and function and their experience of the processes associated with Personal Budget. However, it is important to note that the findings in this section may not be representative of the wider group of practitioners that work with Personal Budgets. Additionally, although recruitment included an element of random selection, through the invite being sent to a randomly selected long list, there is still the issue of self selection where those who feel positively about Personal Budgets may have agreed to attend the focus group.

6.1 Extent of practitioner support for Personal Budgets

Very strong support for Personal Budgets

As was the case in round two of the research, there was very strong support amongst practitioners for Personal Budgets. In particular, practitioners recognised that Personal Budgets allowed service users to exercise choice and control over the care they receive. In their experience, this often related to being able to choose providers that they felt most comfortable with. It also related to having the flexibility to choose when and what time care was provided. In general it allowed service users to feel more in control of the care they received. Practitioners also reported that many service users they had worked with had really valued being able to get consistent care, from the same people every day rather than having different carers as often was their experience with managed services.

These findings are illustrated by the quotes below:

“The choice is there, they can choose who they want to see at their front door. Many times you hear people say I don’t even know who is coming today, I don’t even like them, each day someone new comes and you don’t even know them.”

“I did an assessment on someone who was paying for their care, it [Personal Budgets] was ideal for them, the reason they liked that agency was because they saw the same person everyday and it could be at a time of their choice. If they were going to go away for a few days, they could still have same carer when they came back. So once again it’s about choice.”

Practitioners also felt that Personal Budgets enabled service users to get better quality and safer care. They drew on their own experiences and provided a number of examples to illustrate this point. For example, they reported that the administration of medicines to service users was often governed by when it was convenient for carers to visit service users, which

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could mean that service users were getting their medicines too often or with too large a gap. A Personal Budget by allowing choice and flexibility would therefore result in the safer administration of these medicines. Another example was the case of a diabetic person, who although needs to eat at regular intervals, may instead receive their meals at times that suited carers to visit. As one practitioner commented:

“People are probably safer having a Personal Budget… they’re going to have a more regular and consistent approach to care.”

The practitioners also supported Personal Budgets because they had seen first hand the positive impact it has had on service users and their family members. For example, they reported that Personal Budgets, particularly when used quite creatively can effectively promote independence and improve service users’ confidence and therefore lead to a better quality of life:

“If it does promote independence, it can boost their confidence, lift their mood, give them better quality of life that otherwise they wouldn’t have them.”

Practitioners also recalled their own experiences of seeing many family members under a lot of pressure and struggling as carers, which inevitably had an adverse impact on the quality and dynamics of their relationship with the person for whom they were caring. Personal Budgets, by arranging alternate care or providing much needed respite therefore had a positive impact both on the wellbeing of family members and also on the relationship between family members and service users.

“The risk of that relationship breaking down is less. If you’re always providing care, its no longer quality time with your family members. Its like you’re a maid in that house. You can feel the difference, its a more relaxed atmosphere when you go for the review. It can be too much pressure on family members.”

Benefits of Personal Budgets for different types of service users

Practitioners recognised that the take up of Personal Budgets varied across different types of service users with take up amongst older people tending to be lower. They recognised that perhaps younger people had the potential to benefit more, as there are a wider range of services and activities that they can buy with their Personal Budgets. In particular, they are most able to benefit from including social activities as part of their Personal Budgets.

“Younger people have more choice, like going to social clubs. With younger people social outings and events are included in the assessment to keep that person up and going. With older people, where can they go? To day care mostly.”

However, the practitioners also very strongly felt that all service users could benefit from Personal Budgets. They drew on their personal experiences to give examples of where older people have benefitted from being on a Personal Budget. For example, one practitioner gave the example of an older woman who lives with her daughter and used to go to residential care during respite which would inevitably result in her health deteriorating. However, on a Personal Budget she is now able to have someone come stay with her in her home which has worked much better.

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Some concerns about risk of abuse and impact of delays in set-up

Although practitioners generally had a great deal of support for Personal Budgets, they also had some concerns. For example, some identified the risk of abuse and fraud, at the hands of family members particularly, as a potential negative and were able to give examples of where such abuse had happened:

“The son was looking after her Personal Budget, she has dementia. She was going to day care services… the day care manager flagged it that she wasn’t attending and when she did attend after a few weeks she came with bruises. And that’s how we got involved… found out son was taking the money and using it.”

Practitioners, as in round two of the research, continue to be concerned with the time and delay in getting it set-up and being transferred into service users accounts. Practitioners felt that during this time, there is a risk that the service user will deteriorate or that the carer may not get some much needed respite. In terms of managing risks, practitioners felt that it’s important to provide service users with clear information and clear contingency. It is important to talk to service users about risks and develop contingency plans for these risks. Equally, it is important for practitioners to make detailed notes regarding the situation and needs of service users so that these are available for other practitioners to interpret if need be.

6.2 Impact of Personal Budgets on practitioners’ role and function

Challenges related to ‘selling’ Personal Budgets

The primary challenge that practitioners face is ‘selling’ Personal Budgets to service users. This is particularly the case for older people and for those people who are just coming out of hospital and are most focused on recovery. The concept of Personal Budgets can be overwhelming for these groups. Additionally, service users often become attached and used to the reablement services which are only provided for a limited period of time. They would like to have these continue and it can make selling Personal Budgets more difficult.

“Older people find it quite difficult, if they’re already struggling to cope with daily living, they can find the process, especially the paperwork involved quite overwhelming.”

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. There was also the strong sense, in round three, that practitioners have to ‘believe’ in Personal Budgets to be able to sell it.

“As you become more experienced, you know more about the product, so it becomes easier to sell. I developed a liking for Personal Budgets and I think that helped me to sell it.”

“You have to love it to sell it!”

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Practitioners also think it is important to engage family members when selling and setting up Personal Budgets, particularly for older service users. For those service users that do not have any close family members, practitioners often recommend ecdp pass as this alleviates the burden of managing Personal Budgets.

Practitioners role during set-up and assessment phase

Practitioners also feel that the time it takes for Personal Budgets to become up and running and the bureaucracy involved during the set-up and assessment phase also represents a challenge. In their experience it can take 6-8 weeks for service users to start receiving their Personal Budgets. One practitioner reported that she puts in place a managed service for this period of time. Others reported again working closely with family members to ensure that service users are supported during this time.

“With older people, what we do is work with family to support them until it’s up and running.”

Practitioners reported that it often takes time for service users and their families to adjust and warm to the idea of Personal Budgets. As practitioners, this means being ready to make multiple visits to service users during the set-up phase to convince them that once it is up and running it will be of great benefit to them.

Some practitioners, as in round two of the research, felt that they would have appreciated training and further guidance and information about what they should be telling service users at the assessment and set-up stage. They feel that it is quite a detailed and complex process to have to explain to people.

Practitioners role in monitoring and reviewing

Practitioners also felt that it is important during the assessment and support planning stage to be very clear with service users about what they can and cannot spend their Personal Budgets on. A lack of clarity at this stage can result in problems during the review. Some practitioners felt that conducting reviews can be quite difficult, as it is hard to 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.

“If service users haven’t been given the right information and have been spending it wrong, its very hard to have to explain to families that you should have been doing this, this and this. Because they say ‘well nobody told us’. We’re the ones that have to say that for example, they’ve been given too much money and have to take some back. Often, once they’ve been given the money they see it as theirs, when actually its not, its Essex County Council’s.”

Similarly, some practitioners felt that the leaflets that are provided to service users about Personal Budgets and that are often used as an aid by practitioners to sell Personal Budgets are too ‘flowery’ and to an extent ‘oversell’ the product which means that service users develop an unrealistic perception about Personal Budgets.

One practitioner felt that conducting assessments and reviews had become easier over time, because she had become used to no longer thinking in terms of ‘needs’, but instead in terms

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of “risks, barriers and outcomes”. This shift towards a more holistic understanding of care was also identified in round two of the research.

6.3 Practitioner reflections on ECC systems and processes

The practitioners were asked to reflect on the key processes surrounding the Personal Budgets system, after the assessment and set up phase.

Light touch monitoring of 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. This was also a key finding in round two of the research. 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. They reported that other than this review, or if there is a change in health needs or circumstances, they do not have much contact with service users until the annual review.

With regards to the four week review, practitioners reported that they often do not know if there has been a delay in approving a service users Personal Budget and that it can be quite ‘embarrassing’ and/or ‘unprofessional’ to ring up service users to book in four week reviews only to be told that they have not yet started to receive their Personal Budgets. They felt that this requires all practitioners to be more proactive in finding out about the status of cases:

“If the case has been stalled, you should know about it. Practitioners have to be proactive.”

The practitioners also recognised that it can be quite frustrating for service users to receive calls about the four week review when they have not yet started to receive their Personal Budgets. They also reported that these reviews can be quite time consuming as service users tends to have lots of questions and concerns. These are generally concerned with whether they are using the money correctly or what they should be doing if they are not spending it all and an excess starts to accumulate. Service users can also be quite frustrated that the practitioner who does the four week review is not always the same person who did the assessment. Practitioners suggested that the four week review process would in fact run smoother if the same person who did the assessment also went out to do the four week review. One practitioner reported that her team had put in place a “buddy system” which enabled practitioners to know about each other’s cases and provide cover when needed.

They also felt that some service users are quite wary of the review, and in general of being monitored, perhaps because they do not feel they need it or because they do not like being checked up on. One practitioner felt that the purpose of the review and of monitoring in general should be made clear to service users during the assessment and set-up stage so that they know to expect it and are not wary of it.

In general, the practitioners felt the four week review useful and necessary for safeguarding and for identifying abuse. It s also useful for ensuring service users are not misusing the money or using their entire contingency in too short amount of time.

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The review

The practitioners recognised that the review process is an important part of ensuring there are not any safeguarding issues and for identifying abuse. Practitioners also appreciated that the review is an important opportunity to see whether the support plan and Personal Budget is actually meeting the needs of people and whether in fact these needs have changed over the year. It also allows practitioners to give service users the choice to change the plan or go back to managed services.

“It’s also an opportunity to say ‘this isn’t working for me’ and going back to managed services if they want.”

They felt that it would probably be better if reviews were conducted on a six monthly basis, to ensure safeguarding, but recognise that staff shortages mean that this is not possible. They also feel that reviews are helpful for service users to alleviate any concerns they have about whether or not they have been managing and sending the Personal Budget correctly (see Section 5.2.3 for service user perspectives on the review). Practitioners recognise that it feels like quite a lot of responsibility for some service users.

“To make sure people aren’t worrying, they feel this burden of responsibility with this money being handed to them, they don’t feel confident about managing the money.”

They also felt that the review process is an important part of evidencing to the government how the money is being used. They reported that conducting reviews can be quite challenging because, as mentioned earlier, service users often have not been given the correct information at the set-up stage and have therefore been spending the money incorrectly. Telling them that they have been doing it wrong can be quite difficult. Some service users also do not like being questioned about how they are spending the money, or sharing their bank statements.

“They think it’s their money, because money was allocated to them it’s theirs, they can use it anyhow even if they’ve been given clear guidance that you can use it for this this and this. So it can be quite difficult to tell them that it’s wrong.”

They also felt that conducting reviews was easier with older people who are generally very concerned about whether they are spending the money properly, than with younger people who they described as more ‘tricky’ and with a greater sense of ‘entitlement’.

Some practitioners reported problems in meeting the deadlines associated with reviews and in setting them up. For example, in some cases it is necessary to have many family members present during the review because they are often involved in the care of service users: one may have power of attorney; another may be managing the Personal Budget. Practitioners reported having experiences where they had managed to agree a date and time with family members only to have a family member cancel at the last minute. As practitioners, their forward diaries fill up very quickly and cancellations such as these put a lot of pressure on practitioners to meet their review deadlines.

The practitioners also reported that reviews can at times be frustrating for service users who often expect and would like the practitioner conducting the review to be the same person that conducted the assessment but this is not always possible. On the one had, practitioners definitely felt it would be good for the same person to be conducting reviews and

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assessments. However, they also recognised the value of having a fresh pair of eyes looking at the service user’s case:

“A new practitioner could go in with fresh eyes, whereas regular practitioner may develop complacency really and miss things.”

At the same time, practitioners recognise that reviews can also be challenging if the quality and detail of information recorded by previous practitioners is poor. Practitioners suggested that it is potentially very important for reviews to include providers as well as they also often have a valuable perspective on whether the Personal Budget is working for service users.

Ad hoc communication

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 report that service users tend to call more at the initial stages and that people who have been on Personal Budgets for a while only tend to call if their circumstances or health needs change.

Practitioners 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 anyone from the council. They therefore have high expectations that when they get through to someone that person will be able to answer their question or solve their problem which is not always the case.

“The expectation of the person on the other end is that they’ve gotten hold of someone from social services who they expect to know everything, and they get very upset when you don’t know the answer to questions. Quite often it’s family members. If there’s been a delay in what happening with their case, then there is a complaint involved.”

Practitioners have developed processes that they believe have helped. For example, they try and get as much information as possible from service users. One practitioner has provided her team with a checklist of questions to ask service users when they call. However, despite practitioners implementing these strategies service users continue to experience frustration at trying to get in touch with front line staff (see Section 4.2.3 Stress, anxiety and frustration). Finally, practitioners also reported that the fact that some systems are changing, becoming more centralised and automated when trying to reach someone, may be more confusing for service users.

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7. Service providers’ reflections on Personal Budgets

In existing literature on Personal Budgets, it is generally recognised that a ‘fully functioning market’ is key to their success. However, there has been little research or evidence generated about whether such a market is developing in reality. To help address this gap, one strand of this study has been to analyse the emerging market for care through annual interviews with a selection of service providers. These interviews help us gain an insight into the perspectives of service providers and information on any efforts they are making – or are planning to make – in order to respond to changing demands among service users.

In this section we highlight the extent of support for Personal Budgets by service providers and identify the impact that the introduction of Personal Budgets has had on service providers and on the market for care. We also consider how these things have changed over time.

7.1 Extent of provider support for Personal Budgets

As in the previous rounds of the study providers of all types continue to be positive about the personalisation agenda and to express their support for the introduction of Personal Budgets.

Providers feel strongly that Personal Budgets are adding weight to the concepts of choice, control and greater independence, because they offer service users:

Flexibility to arrange the care and support when they need it;

Choice over who comes in to their home or delivers a service; and

The ability to create a package of care and support that is more tailored to their needs and a level of support that they can scale up or down as their needs change.

Another fundamental shift cited by providers is the way in which Personal Budgets allow service users to enter into a much more direct and empowering relationship with providers – as the customer or direct employer they can raise concerns about the quality of a service and are free to take their business elsewhere if they are not satisfied. A number of day care and residential providers talked about placing Personal Budget users in the same category – theoretically speaking - as self funders in terms of the type of relationship and level of control they are able to exercise.

Several providers talked about how Personal Budgets are allowing service users to be more creative and strategic in how they use their resources, for example by planning activities and forms of support that are more focused on meeting their well being and psychological needs.

“What people want really varies, some people want traditional care in the main – a half an hour call in the morning, others really are more creative, they may want some traditional calls but they will also want to go out shopping and to have a carer to go with them, or someone who can take them to their GP or hairdresser – they’re using it more creatively.”

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There was a sense that in the best examples, Personal Budgets are supporting a relationship and dynamic between users and care givers that is more outcomes focused and rewarding.

“People are realising that they can be flexible with their care calls – they may not need two carers at lunch and tea time, this gives them extra time for shopping – to use it more on what they actually need from week to week.”

Assessment of the rate of uptake of Personal Budgets in Essex

As in round 2, providers continue to note a ‘slow and steady’ increase in the numbers of people using Personal Budgets, particularly in the domiciliary care sector. As in round 2 there were examples of prospective customers who were keen to assess the quality and flexibility of their services:

“People are shopping around for quality. They might want better quality or more flexibility, or use us for care and a PA for taking them out and about.”

By contrast it was much common for residential and day care providers to report few or no users funded by a Personal Budget using their services and these participants often had little sense of the broader uptake of Personal Budgets across the county. Reflecting on the apparent lack of uptake in this service area, several residential providers talked about how their service had shifted in the last few years to becoming more of a ‘last resort’ service - geared towards supporting older people with complex needs and dementia. This was regarded as a type of service that was perhaps less relevant to the ‘typical’ Personal Budget user. Some day care service providers also noted that their customers had no obligation to declare their funding source and therefore they were not sure about uptake.

As in the previous rounds of research, many providers continue to identify clear differences in the extent to which Personal Budgets are being taken up by different user groups. While a young person with a physical or sensory impairment was often cited as the most receptive and able to benefit from a Personal Budget, many felt that for older people they would be a much ‘harder sell’:

“There has been a lot of work done with physically disabled to promote personal budgets. Disabled people are more used to managing budgets – but older people are less used to having to manage their own money - so take up is low.”

There was a view that older people - particularly those aged 80 years or more - value the security and stability of a managed service; the closer relationship with the council and the lack of stress and responsibility associated with set up and management. Some talked about the ‘generational shift’ that would need to take place before large numbers of older people would be prepared to take on a Personal Budget, while others felt that with some extra support and targeted brokerage take up could be greatly increased amongst this group.

A number of providers also felt that Personal Budgets were not being actively promoted by ECC to older people, while others argued that they were available to all and that, in fact older people were taking up the offer providing they had some advice and reassurance.

“Older people are picking it up okay – it’s not aimed at any particularly age group – some don’t like change but when they are told and explained and corrected they are fine. Many

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don’t know about options like using Essex Pass which take the stress of employment out of the equation.”’

There was a view amongst several providers that after an initial big push in communications two years ago, ECC were perhaps promoting Personal Budgets less aggressively now. As in previous rounds of the research, providers of all types and sizes welcomed more ongoing dialogue and updates about ECC’s plans and aspirations relating to Personal Budgets and direction of travel in terms of the personalisation agenda.

Finally, in terms of frontline staff, a minority of providers continue to raise concerns about whether social workers were always promoting Personal Budgets as proactively as they could. Here one provider described one family’s struggle to secure a Personal Budget.

“They had to really fight to get the Personal Budget to come with us, the social worker steering them down the managed service route, family had to be really persistent and determined. That isn’t a one off heard of this a couple of times.”

Reflecting on why this might be the case it was suggested that Personal Budgets may require more time and paper work for social workers, or that perhaps social workers had a lack of clarity about to whom and how they should be promoted.

7.2 Impact of Personal Budgets on social care providers

Shifts in the market

As in round 2 of the research, 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. The key drivers for this are an ever more cost focused public sector and increasingly demanding and savvy service users.

There was a perception amongst some advocacy providers that the value of Personal Budgets being awarded may have decreased in the last year as the council attempts to make financial savings.

“I have a feeling that they may have tightened up on what they award, they are really reducing it down to the critical and substantial needs, the current process feels a lot more rigorous and selective about what is eligible.”

It was felt that these restrictions may be limiting the extent to which Personal Budgets are responsive to meeting more well being and independence focused outcomes for service users.

Reflecting on the shape and character of the social care market, 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.

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As ECC moves away from block contracts, for example with the introduction of the Home Support Service Contract which uses a preferred provider list that can change from month to month, providers also talked about a reduction in guaranteed income which made business continuity and planning more challenging.

“We have this highly price focussed contract, every three month providers can increase their prices, it produces an unstable market, providers now have penalties for refusing packages but they may not be what they can operationally deliver so they should decline.”

As in round 2, several providers continued to raise concerns about the viability of their delivery models in light of the current financial climate and the anticipated cuts to adult social care. There was a view providers must be able to monitor and assess whether their systems and processes and service offer was fit for purpose.

Marketing and communications

Compared with previous rounds, providers appeared to place a stronger emphasis on the importance of marketing and branding their services. With increasing numbers of Personal Budget users entering the market the key challenge is to ensure that one’s service is known about and has a good reputation. As the personalisation and the independent living agenda gathers pace particular sectors such as day care and residential care emphasised the need to effectively market and reposition their services so that they continue to be appealing and relevant.

Providers also emphasised the importance of communicating the value and outcomes they are achieving to external audiences. There was a view that the third sector has had to become increasingly business savvy, and able to demonstrate outcomes to commissioners and users.

“We’ve stopped saying ‘we do good work’, we’re better at defining what that means, in terms of quantitative and qualitative data.”

“We’re very much looking at targeting our services to individuals – using the web, hard copy, and a newsletter. We’re selling the benefits on quality and price on an individual basis. Generally, older people rely on doctor and pharmacist so use those sources.”

Providers of all types emphasised that marketing needs to use a range of channels, including online and paper based campaigns as well as organising events, open days and giving presentations. Providers also talked about the importance of different forms of local marketing and networking with local groups and forums and the need to build awareness and reputation through word of mouth.

“The link between the home and their community becomes paramount, in most cases people come from the local area - this is what feeds the home.”

“Grass roots marketing is key; we’ve done lots of work with local patient involvement groups and local GP.”

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“We run advice and information centres and a mobile service which serves villages – vehicle for us get people to know our services. We’ve been here 20 years – we’re well known locally.”

For this reason it was noted staff are increasingly being expected to have good links and knowledge of the areas that they serve so that they can tap into various formal and informal support networks available to their clients.

There was a concern that smaller providers may struggle to rise to the challenge of marketing their service and raising their profile amongst potential users, and there was a call for the council to provide advice and guidance about how to do this.

Local intelligence and customer insights

Alongside marketing, in round 3 there appears to be a greater focus on the need to generate deep insights about the needs of customers and to track trends in demand in order to inform service development.

“For us it was about getting a real sense of people’s expectations, we commissioned research a series of conduct focus groups – about what is important, what are the frustrations that people are experiencing how can our service challenge the problems and meet these expectation, what appeals to who and what do family members consider?”

It was also emphasised that in the current climate there can be no room for complacency and that providers need to be innovative and ready to revise and reassess what they are doing.

“We are reacting always to what comes are way – we are always trying to evolve our service to meet needs, not necessarily just Personal Budgets, we always try to evolve the service – if you’re not flexible and adaptable you won’t survive.”

Looking ahead there was a view that providers – particularly those in the third sector – should be making efforts to learn from innovative business practice to ensure that they can deliver responsive, customer focussed and flexible services.

“It’s about innovation and finding out what your customers want. The irony is that if you can find out what customers want and deliver that, you can do that on so many levels, for example, Tesco has a sophisticated way of monitoring what people want and they’ve also diversified what they provide, based on the needs of customers. This is exactly what you can do with Personal Budgets.”

Development of flexible service models

Unlike in the first two rounds of the research, in round 3 there are several examples of providers developing service models that could 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.

For example one provider has developed a one stop shop offer which begins with a free assessment that explores a range of options. This could include a combination of telecare, home modifications, information and advocacy as well as domiciliary functions.

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“We try to be flexible, we’re not a domiciliary service strictly speaking, what we deliver is very much driven by our users. The key decisions are just not about whether we make an AM or PM call.”

Other providers talked about how they had updated their services in response to the health and well being agenda and the demands of Personal Budget users. This included a much greater emphasis on preventative services and re-ablement.

“Some people want housework but don’t want it done for them, the service user wants to clean with the carer, that takes more time, some have asked to do - perhaps they’ve had a stroke, they come out of hospital and want to build their skills and independence the Personal Budget allows a big push early on then a slow reduction.”

While the need for flexible service models appears to be key theme there were no examples – as in round 2 - of providers developing new services such as employer support and brokerage services for service users or for free lance carers. However this is more likely a reflection of the change in sample between the two rounds of research and does not necessarily reflect a change in the border market.

Workforce development and recruitment

Providers emphasised the way in which the introduction of Personal Budgets is requiring a number of changes in workforce development and recruitment practices:

Training and development and niche skills – As in round 2 building specialist skills and delivering training to staff continues to be vital to maintaining a competitive high quality service – this includes training in how to do a range of risk assessments, for example, for those staff that accompany service users on outings, as well as specialist training related to meeting the needs of particular user groups e.g. Autism or Parkinson’s.

Values and behaviours – There appears to be a stronger emphasis in round 3, on the fact that delivering quality care is becoming less about delivering a fixed set of traditional social care tasks to an agreed time, and more about working collaboratively with service users to achieve positive outcomes. This requires ‘values based recruitment’ in order to ensure that staff have the appropriate mindset and attitudes required to deliver a personalised service. It was also felt that staff will need to be prepared to vary their support around service users changing needs and routines, and can expect fewer highly predictable and rigid shift patterns.

Building relationships – Providers described a market where it is common for users to expect to have a rapport and some shared interests with care staff such as sports or cooking. This requires providers to carefully match service users and staff. Once users have built these more fulfilling relationships they are demanding a greater continuity of care rather than a ‘revolving door of strangers’ coming into their home.

“It doesn’t tend to be price that is most highly valued – it’s about the relationship they have with for example their home support worker and our local officers. So our support workers will do over and above what’s expected.”

An enabling and facilitating role – Alongside delivering traditional personal care, and unlike in the previous rounds of research, it now appears to be more common for carers are

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PAs to play an important new role -helping service users to socialise and make connections in their local area and leverage new sources of support.

“We have got more involved in helping people stay in touch with their community, helping people to access their banks, pay their bills, far more of that.”

“A gentlemen client wanted to have a drink and socialise in a local labour club – our member of staff could only accompany him once a week so we ended up using informal support to help that individual… more and more it’s about thinking outside the box, we are limited in what we can provide but we can bring in other forms of support.”

Back office changes

As in round 2 of the research, providers continue to highlight the need to redesign and invest in back office functions so that they can deal with higher volumes of transactions. In some instances the costs associated with these changes meant that resources have had to be shifted away from the frontline.

Invoicing and credit control – Providers continued to talk about the need to invest and modernise back office systems so that they have efficient invoicing and credit control systems as they move away from delivering managed services under a block contract. Providers talked about the need to have invoicing systems in place which demonstrate and capture the full range of the services there staff are now delivering.

“We need to be evidencing every bit of support we’re providing. So that we can evidence the invoice. Have various documentation for staff to correctly record everything.”

Risk assessments and insurance and travel policies – Providers also cited the need to create new procedures and policies associated with supporting service users to make leisure trips and engage in a wider range of activities.

The findings discussed above highlight that the introduction of Personal Budgets has resulted in a considerable culture change amongst providers in the social care market.

7.3 Success factors and challenges for Personal Budgets

As in round 2 of the research, providers continue to call for a more streamlined assessment and set up phase, and for the need to make the whole process more person centred: “the person shouldn’t be subordinate to the process - but that’s often how it feels at the moment.”’


There was a strong view from a range of provider types that service users still require a clearer sense of how they can and cannot use their Personal Budgets in order to achieve the best value and impact (see Section 3.2 for service user perspective on lack of clarity). Furthermore, providers, particularly those who deliver advocacy services argued that Personal Budgets need to:

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Offer real flexibility and enable user creativity to deliver on their promise;

Provide enough resource to purchase specialist services where necessary; and

Respond to service users’ psychological and well being needs alongside delivering personal care.

Providers stressed that there is still too much variability in practitioners’ level of knowledge and training related to Personal Budgets. It was felt that addressing this would ensure that the process and outcomes being achieved are more consistent and equitable.

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 emphasised the need to ensure that stringent checks to ensure that staff delivering services have the required levels of training, qualifications and CRB checks are well enforced.

Without robust arrangements it was felt the adverse impacts would be felt by the council and service users but also by the reputable providers who might lose out to competitors who lack their skills, commitment and values. For this reason providers argued that regular reviews of Personal Budget should be considered a top priority for ECC - as they fulfil a vital safeguarding function as well as ensuring that the Personal Budgets continue to meet service user’s needs (see Section 5.3 for practitioners’ perspective on the review).

It is worth noting that in the majority of interviews where these issues were raised, providers talked about the potential for breaches in safeguarding and financial abuse, however few were able to point to particular examples of where this had happened.

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. It was also noted that the system needs to be able to give providers more assurance that service users will have the necessary level of Personal Budgets to be able purchase services.

Finally there was also a call for a more stratified market where providers work together – in the interests of service users - to ensure that they are referred to the specialist services that can best meet their needs.

“The market would work better if it was more stratified – getting away from organisations saying they specialise in this that and the other, when actually they don’t. We would like to see care providers working in partnership – if we have referrals that we know we can’t support we can refer them over to somebody else.”

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8. Summary and conclusions

8.1 How 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. However, a number of other service users are 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. Many service users are also increasingly using their Personal Budgets to purchase respite services in order to give family members the opportunity to take a break or go on holiday, although respite was not purchased by users with physical or sensory impairments. Some 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.

In general, older service users are least likely to be employing freelance individuals, and more specifically, family or friends to provide services. Additionally, 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.

Approximately one third of service users have changed the services that they have been purchasing over the last year. This reflects a change since round two of the research where very few service users reported making any changes to services purchased. For a number of service users this change is a result of a deterioration or improvement in health 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.

8.2 Understanding positive impacts on service users and their families

Increased choice and control over providers engaged

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, having increased choice specifically means that they are able to employ a family member, friend or other individual with who the service user has a personal and trusting relationship. For others it means being able to change providers if they are not happy with the quality of care being delivered. For some service users, increased choice means being able to get consistent,

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personalised and flexible care or being able to change providers if they are not happy with the quality of care being delivered.

Improved wellbeing, living a fuller life

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 service users to get out of the house and interact and socialise with other people. 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.

Increased independence and dignity for 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. According to these service users, increased independence often arose through employing a personal assistant via the Personal Budget 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.

Increased confidence, self esteem and sense of empowerment

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 as a result of developing positive relationships with providers.

Improved physical health

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.

Improved emotional well being of relatives

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. In addition to giving service user’s family members more time to themselves during their daily lives, Personal Budgets have also

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enabled many to be able to plan for holidays. Finally, 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 financial peace of mind and knowing that their relatives are receiving high quality care.

Understanding positive impacts of Personal Budgets

The positive impacts associated with Personal Budgets are a result of a number of factors:

Family and social networks: The support provided by family members and friends in the direct provision of care, as a source of advice, information and advocacy and in taking on the responsibilities of managing the Personal Budget has to date played a significant role in ensuring that Personal Budgets have a positive impact on service users. For example, service users very strongly feel that being able to employ people they are close to has really improved the quality of care that they receive, because as carers they tend to go over and above what is expected of them. Additionally, sourcing recommendations about providers from family and friends meant that service users were likely to be very satisfied with their providers and the quality of care they were receiving.

Financial resources: Those service users that have been able to draw on their own financial resources to supplement the care they receive under a Personal Budget have inevitably had a more positive experience of being on Personal Budgets. For example, they have been able to cover the costs of care when there are delays in the Personal Budget being approved either at set-up or review stage or when the Personal Budget does not cover all care needs.

Knowledge and skills of service users: Those service users and their family members who are more confident, assertive and determined have been better able to ensure that their Personal Budget covers all their care costs and can be used flexibly and creatively. Being confident, persistent and assertive has also meant that service users are better at dealing with delays associated with Personal Budgets, for example with regards to delays in revised Personal Budgets being approved after a review. Additionally, 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.

The role of the local market: The availability of a range of providers has meant that many service users have been able to exercise choice by changing providers if they have been dissatisfied with the standard of care they are receiving. This ensures that service users are able to purchase services from providers who offer the highest quality of care.

The role of frontline staff: Many service users have been able to work with their social workers to develop Personal Budgets that do not only focus on traditional social care needs, but also on wider wellbeing and independence outcomes. On the other hand, some service users are frustrated because they feel their Personal Budgets have been quite inflexible and restrictive. Those with more creative and flexible Personal Budgets therefore tend to benefit more and this tends to be service users with learning disabilities and those with physical or sensory impairments.

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8.3 Understanding adverse impacts on service users and their families

Uncertainty and lack of clarity about the Personal Budget

For some service users and their relatives uncertainty related to not knowing about the range of services that they are able to purchase with their Personal Budget. Others were unsure about the types of providers that could be employed to provide services. Some also expressed uncertainty about any surplus which built up from their Personal Budgets, or how to approach the question of contingency budgeting. Conflicting information from different social workers on these issues exacerbated the problem rather than addressing it.

Stress, anxiety and frustration

For some service users stress was associated with the extra financial burden that arises when the Personal Budget stops unexpectedly, when there are delays in receiving the Personal Budgets, either initially when the Personal Budget is set up or following a change of circumstances or a review, or when the Personal Budget received doesn’t match what the service user expected through their review.

For other service users stress and anxiety is associated with difficulties in getting in touch with the council, not having one point of contact, or receiving conflicting messages from different members of staff. Stress and anxiety also arise from Personal Budgets not being responsive to changing health needs, and therefore not meeting health needs.

Some relatives also experienced frustration when they were unable to find suitable provision or a consistent reliable PA for their relatives. This was particularly the case for people with learning disabilities. Additionally, at times the Personal Budget was leaving service users and families without an adequate level of care, which left families and friends of service users with an additional burden of care.

Understanding the adverse impact of Personal Budgets

The adverse impacts associated with Personal Budgets are a result of a number of factors:

The role of the local market: Some service users have had difficulty finding high quality, specialist provision which, as stated previously, could be a source of frustration and anxiety for service users and their families. Others felt that there was a lack of advice and advocacy support services in the local area. Some also reported that a lack of availability of adequate providers meant that they were forced to employ people that provided substandard care.

The role of frontline staff: Many service users expressed great frustration at either not being able to get in touch easily with their social worker when they wanted to, or not having one point of contact who knew their circumstances. 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 they often received conflicting information from different frontline staff, particularly about the range of services that they are able to spend their Personal Budgets on.

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The role of ECC processes: A number 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 adverse 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 which increased the scope for misunderstandings. 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. Only 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.

8.4 Perceptions of practitioners

There was very strong support amongst practitioners for Personal Budgets. In particular, practitioners recognised that Personal Budgets allowed service users to exercise choice and control over the care they receive. They had also seen from experience over time that Personal Budgets, particularly when used creatively, can effectively promote independence and improve service users’ confidence. Whereas they recognised that perhaps younger people had the potential to benefit more, as there are a wider range of services and activities that they can buy with their Personal Budget, they also strongly felt that all service users could benefit from Personal Budgets.

On the other hand, they also had some concerns about Personal Budgets. For example, some 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. This is particularly the case for older people and for those people who are just coming out of hospital and are most focused on recovery. 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

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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 anyone from the council.

8.5 Perceptions of service providers

Providers of all types continue to be positive about the personalisation agenda and to express their support for the introduction of Personal Budgets. They continue to note a ‘slow and steady’ increase in the numbers of people using Personal Budgets, particularly in the domiciliary care sector. There was a view amongst several providers that after an initial big push in communications two years ago, ECC were perhaps promoting Personal Budgets less aggressively now. Some also have concerns about whether social workers were always promoting Personal Budgets as proactively as they could, alongside there being too much variability in practitioners’ level of knowledge and training in relation to Personal Budgets. As in previous rounds of the research, providers welcomed more ongoing dialogue about ECC’s plans.


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),

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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.

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9 Recommendations

Based on findings from this third round of research – with Personal Budgets holders, ECC frontline staff and service providers – we make the following set of recommendations to continue to support the development and improvement of the delivery of Personal Budgets in Essex. These recommendations also draw on findings from stages 1 and 2 of the research, where we feel they might be of use to wider stakeholders.

Recommendations are grouped according to the 6 factors we have set out throughout our research in the conceptual framework.

9.1 Recommendations for ECC processes

a) Recommendations for set-up and support planning processes

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. This is likely to have a series of benefits, including: improved perception of Personal Budgets amongst service users and practitioners; a reduction in the likelihood of service user needs increasing to more urgent or critical status whilst waiting for a Personal Budget to start; freeing up practitioners to spend more time with other service users.

In lieu of speeding up the set-up process, practitioners should be clear and transparent with service users on the likely time required for set-up to occur.

The council should fully maximise the use of third parties undertaking support planning. This will have a beneficial impact on practitioners in enabling them to focus on other tasks. It will also increase the sources of information available for a user, which in turn will reduce the frustration of service users seeking to make contact with those people supporting them to navigate the social care process.

Some practitioners and service users remain unsure of what users can and can’t purchase with their Personal Budget. Furthermore, some service users were unsure of

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the extent to which they could vary their use of Personal Budgets within the context of their validated support plan. Updated guidelines – which focus on user outcomes, rather than narrow or prescriptive inputs and outputs – may support practitioners and service users both during the support planning process and beyond in understanding what they can or can’t do.

Similarly, there remains evidence of service users under-spending in order to create their own contingency fund. 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.

Service users require “expert” input during the support planning phase whether that be from an ECC practitioner, a third party professional or from another service user with experience of having done the same. ECC may wish to consider the extent of support provided during set up phase, and consider how to make best use out of resources beyond ECC, including the VCS and the community of service users who are “expert” in navigating the system.

b) Recommendations for processes associated with on-going management of Personal Budgets

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.

There is support amongst practitioners (as identified in round 2 of the research) for out-sourcing the function of monitoring to a third party, to reduce the burden on social care staff. However, any transition to a third party managed process should be carefully handled so as to reassure service users about the safety of their personal data. Furthermore, it is important that the third party organisation understands how to monitor effectively, so as not to immediately interpret under-spend as a reason to reduce future Personal Budgets.

c) Recommendations on the review process

There is evidence that four-week reviews are being instigated before a Personal Budget payment has even been made. Internal checks as to the first date of payment should be instigated, after which four-week reviews can then be booked.

Prior to the “annual” review process, service users are unclear what – if any – changes to their circumstances they should notify the council of, or who to report any such changes to. This should be clarified.

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.

Service users are often wary of the purpose of a review once it has been instigated (either by them or a practitioner). ECC should be clear and transparent with a service

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user about the purpose of a review and the possible outcomes that could arise from a review.

Practitioners should be encouraged to view the review process not only as a check-up but also a chance to improve outcomes for service users. Practitioners should be discouraged from conducting reviews by telephone for individuals on Personal Budgets, and should ensure that they have had a chance to fully engage with the service users support plan prior to the review process. There may be scope for ECC to develop “practice share” sessions on how to conduct effective and efficient Personal Budgets reviews.

As with support planning, the council should fully utilise maximise the use of all types third parties undertaking reviews as well.

9.2 Recommendations for frontline staff

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. Practitioners may currently discourage individuals from taking on a Personal Budget by over-emphasising aspects such as direct employment, which will serve to discourage a number of individuals who do not wish for such involvement and responsibility.

To support this, ECC should report internally across all areas and teams on the take-up rates of Personal Budgets, identifying good and poor performing teams.

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.

Overall, ECC may wish to review the amount of additional support it currently receives from the VCS and the wider market, to add capacity to its current resource of “front-line” staff. Throughout the report, we have indicated areas where service users themselves may be able to support each other, and where “expert” but not necessarily “professional” support is required by service users.

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9.3 Recommendations for market development

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. This could include requiring providers to report on how many Personal Budgets holders they support, and what proportion of their activity / spend is taken up in providing for people with Personal Budgets.

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.

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 that the VCS could be a provider for their Personal Budgets, and this may encourage them to consider the option of a Personal Budget.

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 (through, for example, onerous Pre-Qualification Questionnaire stages)

ECC should encourage, and perhaps formalise, the role of service users in providing local intelligence and customer insights on the market and its quality. This would be an order of work lower than the proposed role of HealthWatch Essex, and could be of significant benefit to both ECC and providers.

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.

Providers would continue to benefit from further engagement on and clarity around the question of Individual Service Funds, to ensure that all service user groups are given the option to direct their own care.

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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.

Further than basic information about the market, there remains a demonstrable need for support services – such as Independent Living Advocacy – to support individuals to navigate the social care economy. This is especially the case where users do not have family members or carers (as the majority do in this study).

9.4 Recommendations for 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 service users to create stronger social networks could have a number of knock on benefits in terms of reduced demand for social care staff expertise, as well as increased confidence and expertise amongst service users.

9.5 Recommendations for supporting skills and knowledge development amongst services 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

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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. As part of the review process, social care practitioners may wish to consider which additional skills are required by service users to support re-entry to employment, add signpost service users to additional support from other statutory agencies.

Such offers should include promoting those that are freely available through other organisations (such as Skills for Care) as well as those provided under contract through ECC (such as with Independent Living Advocacy).

Personal Budget holders, along with all social care service users, should be made aware of the work of HealthWatch Essex, and be encouraged to contribute their experiences to the work of HWE.

9.6 Recommendations relating to 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.

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Appendix 1: Service providers interviewed

N. Name of provider Type of service Client group(s)Interviewed previously

1 Scope Vol org / Residential LD N

2 Crouched Friars Residential OP N

3 Runwood Residential/Nursing OP N

4 Autism Anglia Vol org / Residential OP N

5 BUPA Residential/Nursing OP N

6 Crouched Friars Residential/Nursing OP N

7 Calvern Care Domiciliary OP N

8 Forest Homecare Domiciliary OP N

9 Mayfair Care Services Domiciliary OP N

10 The Dengie Project Trust Day Care OP N

11 Essex Cares Day Care OP / LD N

12 Salvation Army Vol org / Day Care OP N

13WRVS

Vol Org /charity / private

Daycare / ResidentialOP N

14 Tendring Mental Health Services

Advocacy LD N

15 ILA Advocacy PSI/LD/OP Y

16 Advocacy Essex Service Advocacy PSI/LD/OP N

17Age UK

Vol org / Advocacy / practical home support

OP N

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impact of personal budgets in adult social - final report

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