Briefing 1: Positive impacts of Personal Budgets on service users

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In 2008, Essex County Council (ECC) commissioned ecdp and OPM to follow people over 3 years as they use cash payments for adult social care within Essex.
This study provides a unique opportunity to fully understand the experiences of people living with a personal budget over this time - a perspective that is often overlooked.
This is 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.

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Briefing 1: Positive impacts of Personal Budgets on service users

  1. 1. Briefing paper 1: Positiveimpacts of Personal Budgetson service usersFindings from the third round of a three-yearlongitudinal study in EssexSeptember 2012OPM252B Gray’s Inn RoadLondon WC1X 8XGtel: 0845 055 3900fax: 0845 055 1700email: office@opm.co.ukweb: www.opm.co.uk
  2. 2. Briefing paper 1: Positive impacts of Personal Budgets on service usersIntroductionOPM and ecdp (formerly Essex Coalition of Disabled People) were commissioned by EssexCounty Council (ECC) in October 2008, at the time of introducing Personal Budgets for adultsocial care, to conduct a three-year, longitudinal study into the system of Personal Budgets.The study aimed to: 1. Capture the impact of self-managed Personal Budgets on the lives of people who use them, including evidence of how and why impact is being achieved over time; 2. Assess the effectiveness of practices and processes being used by ECC and its partners to support the delivery of Personal Budgets, including evidence of how the market is evolving over the study period.This is one of a series of briefing papers containing findings from the third round of researchwith service users, frontline practitioners and providers in Essex. These brief papers havebeen 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) OPM page 1
  3. 3. Briefing paper 1: Positive impacts of Personal Budgets on service usersKey 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 needsOverviewBy the final round of research in this study, service users included in the sample had beenreceiving Personal Budgets for just over two years. A number and range of outcomes wereidentified in the first and second rounds of the research, and in the final round a greaternumber of outcomes for service users and relatives had had time to develop and beembedded.While these outcomes vary from person to person, they can be grouped into the followingfive areas:1. Improved quality of care through increased control and choice2. Improved wellbeing, living a fuller life3. Increased independence and dignity4. Increased confidence, self esteem and empowerment5. Improved physical healthIt 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 andsensory impairments (PSI) – experiencing positive impacts in all of these areas. We haveindicated where a particular user group is strongly associated with a particular impact. OPM page 2
  4. 4. Briefing paper 1: Positive impacts of Personal Budgets on service usersPositive impacts of Personal Budgets on service users1. Improved quality of care through increased choice and controlIncreased choice and control over providers engagedIn round three of the research, many service users and their relatives had exercisedincreased choice and control over the providers they employ to provide their care. As inround two, the outcome of this was to purchase care which better meets their needs, is of abetter quality and which they are more satisfied with.For a number of service users, having increased choice specifically means that they are ableto employ a friend or a family member. This was felt to be important because such as anindividual would have a better understanding of the service user’s needs and therefore beable to provide a better quality of care. Having a PA or carer who the service user feltcomfortable with was found to be particularly important for service users with complex orspecialist needs, where receiving care from someone the service user trusted and who knewthe service users needs was of utmost importance. For example, one service user withlearning 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, Ive tried other people but it isnt working. So Ive got to use my other daughter because she listens to her, shes strong with her, she knows her, shes confident with her.” (Mother of service user with LD)For some service users increased choice has meant that they have been able to changeproviders if they are not happy with the quality of care being delivered. "It was odd at first but this way we get the [flexibility]... if he comes home one day and says “I don’t like so and so”... It does give us the option, I would feel awful, but it does give us the option to say “Look, you know, maybe its not working out, Daniel’s not so happy.” (Mother of service user with LD)Access to consistent, flexible or personalised careFor some service users, increased choice means being able to get consistent care, that is, toensure that it is the same carers or PAs that provide care every day. This was specificallyimportant for service users with challenging behaviour, where it was particularly valuable forcarers to be confident with the service user and to know their needs. For example, the familymember of one older service user described how the Personal Budget had been instrumentalin 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 Im really happy that I have a Personal Budget for my mother. Its worked well." (Daughter of older service user)For other service users choice over what care to purchase can also relate to having greaterflexibility in when care is delivered. For example, if a service user can choose care which isflexible, it means care can be fit into other aspects of daily life instead of ‘normal life’ being OPM page 3
  5. 5. Briefing paper 1: Positive impacts of Personal Budgets on service usersdetermined by visits from carers. This is particularly important for PSI service users who aretrying to lead active lives or who have family responsibilities. "I get to choose who, where and what. I wasnt comfortable when we had the lady coming in, putting me to bed at 6 and getting me up at 9, Im 25, I don’t want a complete stranger coming in to my house and washing my hair for me. Now, I can choose somebody that I trust and that Im comfortable around.” (PSI service user)2. Improved wellbeing, living a fuller lifeMany service users purchased leisure activities and opportunities for personal developmentwhich enabled them to live fuller and what they often described as more ‘normal’ lives. Asone 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 toget out of the house and interact and socialise with other people. As the quote belowillustrates, the impact of pursuing these activities was increased well being and happiness: "She does get fed up, so I think its 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, shes known them for 18 years and a lot of the people at Crossroads and EcoWings, she went to school with. So I think its 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 inactivities they enjoy, without which they recognised that they may well have beenconstrained 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 its given him a life back. Its the freedom that its 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 likelyto use their budgets to purchase leisure and personal development activities or a PA toaccompany them on such activities.3. Increased independence and dignity for service usersMany service users and their family members also felt that services purchased through thebudgets enabled a greater sense of independence for service users. This was more likely tobe the case for service users with physical or sensory impairments. According to theseservice users, increased independence often arose through employing a personal assistantto accompany a service user on leisure activities or to run daily errands which meant thatthey 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) OPM page 4
  6. 6. Briefing paper 1: Positive impacts of Personal Budgets on service usersFor a number of service users being able to access care, particularly personal care, fromindividuals other than family results in an important sense of dignity and respect. This wasparticularly the case for some older service users who before being able to access PersonalBudgets had been reliant on family members for personal care. For example, one serviceuser’s husband related how he felt it was very important that his wife receive personal carefrom 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 its totally different, its 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 wasimportant Personal Budgets had meant that they did not have to rely on family members forrunning personal errands:4. Increased confidence, self esteem and sense of empowermentIncreased self esteem and confidence arose in a variety of ways across all service usergroups. For some service users, particularly those with physical or sensory impairments orlearning disabilities, increased confidence and self esteem came about through using thebudget to participate in activities that included opportunities for interaction with others andbeing able to try new things. For one PSI service user, the increase in confidence cameabout through employing a friend as a PA, who encourages her to do activities for herself: "Its 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 beingable to self-manage Personal Budgets and deal with providers directly had given them asense of empowerment. For example, one service user commented on how the agency heuses treat him like an employer rather than ‘like they’re doing me a favour’. Another serviceuser 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 Im depending on her, because its 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 shes doing my housework.” (PSI service user)5. Improved physical healthThe activities and care purchased through Personal Budgets have had a substantial impacton physical health for a number of service users. This outcome was particularly evidencedamongst PSI service users.For some, the impact of the Personal Budget has been increased mobility and being able tostop using a wheelchair, through using the Personal Budget to purchase services such asswimming or using a gym. For one of these service users, the physical change is so markedhe has stopped employing a PA and thinks he will be in a position to stop using his PersonalBudget: “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) OPM page 5
  7. 7. Briefing paper 1: Positive impacts of Personal Budgets on service usersFor another PSI service user, using Personal Budgets to purchase physiotherapy four timesa week has resulted in a tangible improvement to his physical health, which was describedby his relative as ‘amazing’. According to service users, the impact of Personal Budgets onimproving physical health is facilitated by the freedom and flexibility to purchase serviceswhich meet the needs of service users. OPM page 6

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