Impact of Personal Budgets in Adult Social - final report

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

September 2012

OPM
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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 ssheikh@opm.co.uk

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.

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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
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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Contents
Foreword.................................................................................................................................. 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................................................................................................66
9 Recommendations............................................................................................................. 73
Appendix 1: Service providers interviewed............................................................................80

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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

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how they spent their Personal Budgets from what was specified in their original support
plan, and uncertainty about what to do with any surplus built up in their Personal Budget
accounts.
• Service users reported stress associated with the extra financial burden that arises
when the Personal Budget stops unexpectedly, when there are delays in receiving the
Personal Budgets, or when the Personal Budget received does not match what the
service user expected through their review.
• Stress and anxiety was often associated with delays in a revised Personal Budget being
approved following a review or a change in circumstances. This is often exacerbated by
difficulties in getting in touch with the council, not having one point of contact, or receiving
conflicting messages from different members of staff.
• For some service users, delays associated with systems and processes have been
limited to the set-up phase, after which the Personal Budget operates smoothly. This is
particularly the case for service users who do not experience changing care needs.
However, where there are delays beyond this, when the level of Personal Budget
received doesn’t match the level expected, or when Personal Budgets feel not to enable
responsiveness to changing care needs, this can lead to anxiety for the service users
affected
• Some relatives of LD service users experienced frustration when they were unable to
find suitable provision or a consistent reliable PA for their relatives. In these cases, the
positive impact of Personal Budgets was limited because relatives did not feel they could
find providers who were able to deliver the appropriate support or care for their relatives.

Understanding the role of personal resources
• Service users’ families and social networks continue to be an important part of
determining the type and magnitude of impact of Personal Budgets. For the majority of
service users, Personal Budgets are being managed by a family member. Service
users also at times spend a significant part of their Personal Budgets on employing
family or friends directly to provide care. These service users feel very strongly that
being able to employ people they are close to has really improved the quality of care that
they receive.
• A number of service users also draw on family and friends for support, advice and
information relating to Personal Budgets. For example, service users often reported
employing providers recommended specifically by family members or friends.
• Friends and family members also often play an advocate role and work hard to ensure
that service users are able to maximise the benefits associated with Personal Budgets.
This can involve ensuring that the Personal Budget covers the full costs of care needed,
or that the Personal Budget can be spent creatively and in a way that meets broader
wellbeing outcomes.
• Round three of the research continues to indicate that those service users that are able
to contribute their own financial resources are better able to make the most of their
Personal Budgets. For example, a number of service users or their family members draw
on their own financial resources to cover the cost of care because the initial Personal
Budget that had been approved was not enough to meet all their needs.
• Delays associated with reviews or problems with others aspects of the Personal Budget
system also mean service users need to use their own financial resources. In a small

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number of cases service users also use their own financial resources to supplement the
care that they receive, for example through the purchase of one-off items such as
exercise machines.
• Service users and their family members continue to feel that being confident,
determined and able to articulate and negotiate are the most important skills in
ensuring that Personal Budgets work well for them. This was particularly important in
ensuring that they were able to secure a Personal Budget that covered the full cost of the
service user’s health needs, that they were able to use their Personal Budgets flexibly
and creatively, or when dealing with delays. A number of service users and their family
members also felt that they had become more confident over time, now that they had
been receiving Personal Budgets for over a year.
• Service users also reported that drawing on a range of skills that they had gained from
previous employment experience had made the experience of managing Personal
Budgets easier. For example, those service users who were used to administrative and
record keeping work as well as managing Personal Budgets and running their own
businesses, found it easier to manage and navigate the Personal Budgets system.

Understanding the role of external factors
• The extent to which there is a developed, local market of providers impacts significantly
upon the ability for service users to achieve positive outcomes. A number of service
users reported having exercised choice and control by changing providers because they
were dissatisfied with the care they were receiving.
• However, some service users have had difficulty finding high quality, specialist provision
which. Some reported that a lack of availability of adequate providers meant that they
were forced to employ people that provided substandard care.
• The role of ECC staff is also key to achieving positive outcomes for service users. They
keenly felt that having one point of contact meant that they were able to start receiving
payments quickly, have a review of one’s needs when necessary, receive an adequate
level of Personal Budget and also access advice and guidance when necessary.
Conversely, not having an assigned point of contact was associated with adverse
impacts such as not being able to get a review when necessary, not getting an adequate
amount of money for care, as well as the frustration which resulted from being passed
around from person to person.
• Service users also experienced anxiety and stress because they sometimes received
conflicting information from different frontline staff, particularly about the range of
services that they are able to spend their Personal Budgets on.
• A number of service users who had not had a review felt they needed one because of
health needs changing or because of wanting the Personal Budget to be recalculated
following a change in circumstances, for example leaving college or school.
• A number of service users have also had poor experiences of their reviews. For some,
this was due to not having a consistent person assigned to the case, and a sense that the
social worker did not understand their needs. Others felt the review experience was
negative because their social worker was interrogating and reprimanding them for not
spending payments correctly; because of being given conflicting information from what
they have been told previously or because they find the process confusing and feel as
though they have to ‘fight’ for the care they need.

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• A third of service users recognised having a contingency built into their Personal
Budget. However, some of these service users do have concerns about and are unclear
about how contingencies are meant to operate. The majority of service users when asked
about a contingency, felt that this referred to any surplus that may have built up in their
accounts due to care needs and costs varying over different months.

Key findings from front line practitioners within ECC
• There was very strong support amongst practitioners for Personal Budgets. They
recognised that Personal Budgets allowed service users to exercise choice and control
over the care they receive and had also seen from experience over time that Personal
Budgets, particularly when used creatively, can effectively promote independence and
improve service users’ confidence.
• On the other hand, some practitioners also identified the risk of abuse and fraud, at the
hands of family members particularly, as a potential negative. Others continue to be
concerned with the time and delay in the bureaucracy associated with the set-up
phase and monies being transferred into service users’ accounts.
• The primary challenge that practitioners face is ‘selling’ Personal Budgets to service
users. The practitioners felt that selling Personal Budgets has become easier over time
as they themselves now know more about the product and are more confident about how
it works. This represents a change from round two of the research which found that
practitioners had little confidence and insufficient expertise relating to Personal Budgets.
• It appears that there may be a lack of clarity amongst practitioners about the purpose
and responsibilities associated with monitoring service users on Personal Budgets. When
asked about what types of monitoring they have been involved with, the practitioners
were only able to identify the ‘four week review’ which is conducted face to face with
service users.
• The practitioners recognised that the annual review process is an important part of
ensuring there are not any safeguarding issues and in making sure that the support plan
and Personal Budget is actually working for people. Some felt that conducting reviews
can be quite difficult, as they sometimes have to tell service users and their families
that they have been spending their Personal Budgets incorrectly or that they have been
receiving too much and some will have to be returned. Some also reported problems in
meeting the deadlines associated with reviews and in setting them up. Some practitioners
also recognised that reviews can also be challenging if the quality and detail of
information recorded by previous practitioners is poor.
• With regards to ad hoc communication with service users, practitioners reported that
service users tend to get in touch with them with questions about what they can use their
Personal Budgets for, whether they can use any excess cash that has accumulated in the
account on other things that were not in support plan and whether they should be
keeping receipts. They also reported that service users are often very upset and angry
when they call, often because they have found it difficult to get in touch with the council.

Key findings from interviews with service providers
• Providers of all types continue to be positive about the personalisation agenda
continue to note a ‘slow and steady’ increase in the numbers of people using Personal
Budgets, particularly in the domiciliary care sector.

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• There was a view amongst several providers that after an initial big push in
communications two years ago, ECC, and social workers more specifically, were perhaps
promoting Personal Budgets less aggressively now. As in previous rounds of the
research, providers welcomed more ongoing dialogue about ECC’s plans.
• Providers continue to argue that advocacy, information and support are the vital
‘ingredients’ required to scale up the use of Personal Budgets, particularly for those with
a learning disability and for older people. Added to this, service users could benefit from
basic budgeting skills as well as having realistic expectations about what they can
achieve with a Personal Budget.
• There was a strong message across different provider types that the social care market
is becoming increasingly competitive in terms of both price and quality. Some felt
that current conditions are beginning to favour larger providers who are able to operate
on economies of scale and who have the funds to invest in services and better marketing.
At the same time providers (particularly those in the domiciliary sector) observed that the
social care market had become ever more crowded as more small providers and
freelance carers have entered the market.
• All types of providers emphasised the growing importance of marketing and branding
their services and on the need to generate customer insights and track trends in demand
in order to inform service development.
• There continue to be several examples of providers developing service models that
can deliver more flexible and tailored packages of support and care. In their efforts to
meet a range of needs several providers had shifted to a point where they no longer
neatly occupied a single category of service provision. A number updated their services
in response to the health and well being agenda and the demands of Personal Budget
users by placing a much greater emphasis on preventative services and re-ablement.
• A number of changes to workforce development and recruitment practices were also
identified by providers, including training and development in specialist skills (e.g.
Autism), the importance of ‘values based recruitment’ and the capacity for carers to play
an enabling and facilitating role.
• As in round 2 of the research, providers continue to have serious concerns that Personal
Budgets are not monitored in enough depth to properly safeguard users and protect
them against fraud. Providers also have a cluster of financial concerns including the fact
that the hourly rates used in Personal Budgets are failing to reflect and keep up with the
real costs of the market. Finally there was also a call for a more stratified market where
providers work together – in the interests of service users.

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

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outcomes, rather than narrow or prescriptive inputs and outputs – may support
practitioners and service users both during the support planning process and beyond.
• There is a need to ensure that during the assessment and support planning phase,
practitioners emphasise planning for contingency and include an accessible contingency
fund.
• A review of communication protocols with service users may reveal ways to reduce the
amount of time service users spend trying to get in touch with frontline staff. The current
system is not cost effective for the council, as service users must explain their personal
circumstances and their query to a number of different people, taking up unnecessary
time and resource.

• Fully maximising the use of third parties undertaking support planning and reviews will
have a beneficial impact on practitioners in enabling them to focus on other tasks and will
also increase the sources of information available for a user. This in turn will reduce the
frustration of service users seeking to make contact with those people supporting them to
navigate the social care process.
• There is evidence that staff are currently unclear on the purpose of and the process
associated with light-touch financial monitoring. It might be helpful to clarify the distinction
between this and the review process.
• Both staff and service users are unsure when a review should be instigated, and by
whom. This should be addressed. ECC should also be clear and transparent with a
service user about the purpose of a review and the possible outcomes that could arise
from a review. Practitioners should also be encouraged to view the review process not
only as a check-up but also a chance to improve outcomes for service users.
• ECC practitioners could do more to encourage uptake of Personal Budgets amongst
certain groups, such as older service users, by noting the range of options available to
reduce the burden on service users and their families. The more familiar a practitioner is
with the possibilities of a Personal Budget for a service user, the more likely they are to
suggest one. Practitioners with more experience of proposing and establishing a
Personal Budget should “buddy” practitioners with less experience.

Developing the market
• Overall there is a call for ECC to continue and extend its engagement of and consultation
with the provider market. In response to this, ECC should expect explicit commitment and
evidence from providers of the work they are doing to ensure personalisation, and
Personal Budgets in particular, are meaningful for service users. ECC should reassert the
importance of Personal Budgets to its vision for adult social care in Essex, in order to
reassure – or remind – providers that this remains the intention.
• There is appetite for Essex to play a greater role in supporting new entrants to the
market, for example in rural areas where service users are currently limited by the lack of
providers and in under-developed markets such as support for LD service users.
Similarly, there is appetite for the council to ensure small or micro enterprises can play a
part in the market. This can be achieved through a framework of providers, or improved
procurement processes that don’t preclude smaller organisations from taking part
• It would be beneficial for ECC to state the importance of the Voluntary and Community
Sector in its market-shaping work. Service users didn’t explicitly express understanding

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that the VCS could be a provider for their Personal Budgets, and this may encourage
them to consider the option of a Personal Budget
• ECC should encourage, and perhaps formalise, the role of service users in providing
local intelligence and customer insights on the market and its quality.
• There is often a discrepancy between the cost of care as provided for in the Personal
Budget and the cost of care that service users are being asked to pay. In this context,
there is a need for ECC to negotiate and consult with providers to ensure reasonable,
appropriate and parallel rates are set by both sides.
• There is a need for more easily accessible information around the quality of the market
available to service users. At present, service users rely on “word of mouth” or “trail and
error.” Within other authorities there are innovative online platforms that provide user
generated information on provider quality, which ECC may wish to explore.

Supporting social and support networks
• In a context where many service users cannot get access to the level of information and
guidance they would like from frontline ECC staff – which leads to stress, anxiety and
frustration, there may be benefit in the council reviewing the arrangements for service
user networks and projects that enable practice share and peer-to-peer support.

Supporting skills and knowledge development amongst service users
• Service users who are responsible for their own Personal Budgets, but do not have the
necessary skills to effectively manage the Personal Budget and manage provider
performance should be increasingly supported by ECC, the local VCS and the market to
obtain these skills. There are opportunities for training and development around: financial
literacy, basic numeracy, negotiation skills, and assertiveness training.
• There is evidence that for some service users Personal Budgets can bring about an
increase in confidence and self-esteem. The extent to which this outcome can support
service users’ transitions back to employment should be explored.

Building financial resources
• Service users should be encouraged to make the most of the various advice agencies
available in Essex that can help maximise their income through the welfare system.
• Similarly, whilst the Right to Control Trailblazer remains operational across Essex,
service users should be encouraged as far as possible to consider the other funding
streams available – particularly related to employment – as a means to explore improved
financial resources.

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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:

OPM page 10


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.

OPM page 11


Round 1 Round 2 Round 3

Oct 2008: Oct–Dec Oct 2011:
Study 2010: Focus
commissioned Interviews with group with
providers front line July 2012:
Aug 2009:
staff
Interviews with Nov 2010 –
providers Jan 2011: Oct 2011 –
Final
Interviews with Jan 2012:
Nov 2009–Jan report
service users Interviews
2010: published
with service
Interviews with February
users
service users 2011: Focus
group with Nov 2011 –
June 2010:
front line staff Jan 2012:
Round 1
Interviews
report July 2011:
with service
published Round 2
providers
report
published

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.

OPM page 12


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

Older 25 10 10

PSI 13 9 11

LD 8 7 8

Total 46 26 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.

OPM page 13


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

OPM page 14


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

Insights from self-directed support practitioners

• Section 6 details the findings from the focus group discussion with ECC practitioners,
including the extent of their support for Personal Budgets and their experience of the
associated processes and systems.

• Section 7 outlines the perspectives of a range of providers on the system of Personal
Budgets and set outs the ways in which they are responding to the new market of
service users.

Conclusions and recommendations

• Section 8 contains a series of conclusions as to current impact of Personal Budgets
on service users, and the supporting market and systems.

• Section 9 goes on to recommend a series of considerations and actions for ECC in
their on-going development of Personal Budgets.

Please note: the names of service users and their family members have been 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.

OPM page 15


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.

OPM page 16


• 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.

OPM page 17


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 Example of Older service Service users Service users All service
service service users (N=10) with PSI with LD (N=8) users
(N=11) (N=29)

Social care Personal care, 9 7 6 22
respite care

Leisure, PA support, 2 8 7 17
personal help around
development the house, trips
and domestic and activities
help

Access and Transport, 1 4 4 9
equipment health
equipment

Health Physiotherapist 1 2 0 3
services

Information Advocacy, 0 0 0 0
and brokerage advice and
support

ecdp pass Payroll 3 3 2 8
support,
accounts
handling

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

OPM page 18


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

OPM page 19


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

OPM page 20


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.

OPM page 21


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

OPM page 22


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

OPM page 23


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.

OPM page 24


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)

OPM page 25


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.

OPM page 26


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

OPM page 27

Impact of Personal Budgets in Adult Social - final report

Impact of Personal Budgets in Adult Social - final report

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