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

OPM252B Gray’s Inn RoadLondon WC1X 8XG

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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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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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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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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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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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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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