In 2008, Essex County Council (ECC) commissioned ecdp and OPM to follow people over 3 years as they use cash payments for adult social care within Essex. This study provides a unique opportunity to fully understand the experiences of people living with a personal budget over this time - a perspective that is often overlooked. This is one 5 briefing papers that contain findings from the third and final round of research with service users, frontline practitioners and providers in Essex who are working to facilitate self-directed support across the county. You can read the full, final report, the 4 other associated briefing papers and 3 videos that provide the lived experience of users over the last 3 years on ecdp's website: www.ecdp.org.uk.

1. Briefing paper 1: Positive
impacts of Personal Budgets
on service users
Findings from the third round of a three-year
longitudinal study in Essex
September 2012
OPM
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2. Briefing paper 1: Positive impacts of Personal Budgets on service users
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 is one of a series of briefing papers containing findings from the third round of research
with service users, frontline practitioners and providers in Essex. These brief papers have
been produced to share key findings with audiences involved in personalising social care,
including practitioners, managers, commissioners, service providers and policy makers.
Other papers in this series include:
• Briefing paper 1: Positive impacts of Personal Budgets on service users
• Briefing paper 2: Factors that enable Personal Budgets to have a positive impact
• Briefing paper 3: Ways to improve the impact of Personal Budgets
• Briefing paper 4: Family, friends and Personal Budgets
• Briefing paper 5: Impact of Personal Budgets on providers
For copies of any of the above or for a copy of the full report, which contains details of
our findings, please email Sanah Sheikh at OPM. (ssheikh@opm.co.uk)
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3. Briefing paper 1: Positive impacts of Personal Budgets on service users
Key points
• Service users are experiencing a greater number of positive outcomes after two years on
their Personal Budget, including an improved quality of care, living a fuller life, increased
independence and dignity, increased confidence and improved physical health.
• Having increased choice means that service users are able to employ a family member
or friend directly to provide care. It also means being able to get consistent, personalised
and flexible care.
• Many service users have purchased leisure activities and opportunities for personal
development which have enabled them to live what they often described as more ‘normal’
lives, including the ability to socialise with other people or being able to go out and
participate in activities they enjoy.
• For many service users, particularly those with physical or sensory impairments,
increased independence and dignity often arose through employing individuals other than
family which meant that they do not have to rely on their families for daily errands and
tasks.
• Increased confidence often 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. Being able to self-manage Personal Budgets and deal with providers directly
also gave service users a sense of empowerment.
• 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 their needs
Overview
By the final round of research in this study, 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 rounds of the research, and in the final round a greater
number of outcomes for service users and relatives had had time to develop and be
embedded.
While these outcomes vary from person to person, they can be grouped into the following
five areas:
1. Improved quality of care through increased control and choice
2. Improved wellbeing, living a fuller life
3. Increased independence and dignity
4. Increased confidence, self esteem and empowerment
5. Improved physical health
It is also important to note there is evidence of each of the user groups involved in this work
– older service users, service users with learning disabilities (LD) and with physical and
sensory impairments (PSI) – experiencing positive impacts in all of these areas. We have
indicated where a particular user group is strongly associated with a particular impact.
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4. Briefing paper 1: Positive impacts of Personal Budgets on service users
Positive impacts of Personal Budgets on service users
1. Improved quality of care through increased choice and control
Increased choice and control over providers engaged
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.
For a number of service users, having increased choice specifically means that they are able
to employ a friend 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 the service user felt
comfortable with was found to be particularly important for 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 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)
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.
"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)
Access to consistent, flexible or personalised care
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. This 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 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)
For other service users 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
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5. Briefing paper 1: Positive impacts of Personal Budgets on service users
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)
2. Improved wellbeing, living a fuller life
Many service users 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)
For many service users the 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, without which they recognised that 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)
“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 budgets to purchase leisure and personal development activities or a PA to
accompany them on such activities.
3. Increased independence and dignity for service users
Many service users and their family members also felt that services purchased through the
budgets enabled a greater sense of independence for service users. This was more likely to
be the case for service users with 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)
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6. Briefing paper 1: Positive impacts of Personal Budgets on service users
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:
4. Increased confidence, self esteem and sense of empowerment
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
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 activities for herself:
"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)
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)
5. Improved physical health
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 Budget 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
he has stopped employing a PA and thinks he will be in a position to stop using his Personal
Budget:
“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)
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7. Briefing paper 1: Positive impacts of Personal Budgets on service users
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’. 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.
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