personalisation briefing 5 - a collection of case studies

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Briefing paper 5: ‘In our ownwords’ – the impact of cash

payments on service users andtheir families

longitudinal study in Essex

May 2011

ecdp

year-threeFindings from the second round of a

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Introduction

In 2008 Essex County Council (ECC) commissioned OPM and ecdp to do a longitudinal

study of people receiving cash payments for adult social care within Essex. The study

provides a unique opportunity to fully understand the experiences of people living with a

personal budget over a three-year period, and also to engage with stakeholders from the

council and the wider service market who are working to facilitate self-directed support within

the local area.

The study has two main objectives:

1. To capture the impact of self-managed cash payments on the lives of people who use

them, including evidence of how and why impact is being achieved over time

2. To assess the effectiveness of practices and processes being used by ECC and its

partners to support the delivery of cash payments, 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 second annual 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 cash payments, for service users and their families

Briefing paper 2: Understanding demand

Briefing paper 3: Developing the service provider market

Briefing paper 4: Attitudes to risk in spending personal budgets

For copies of any of the above or for a copy of the full report, which contains details of our

findings, please email Sarah Holloway at OPM ([email protected])

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mailto:[email protected]

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One of the main aims of this study is to capture the impact of cash payments on the lives of

the people who are using them and their families. This involves looking beyond narrowly

fixed social care outcomes to wider impact on people’s lives.

This document is an accompaniment to Briefing 1: Positive impacts of cash payments on

service users . It contains a selection of case studies from the second round of our research

with service users.

The case studies illustrate in more detail, and in their own words, the positive impacts of self-

directed support on service users as well as their families. The case studies are:

Case Study 1: Increased sense of control for service users

Case Study 2: Improved emotional well-being

Case Study 3: Improved access to social interaction Case Study 4: Improved family relations.

As well as describing the impact of cash payments, the study is also designed to understand

which factors have been responsible for bringing about the impact and to inform decisions

about improvements to move towards universally positive outcomes for service users.

To analyse the influence of different factors on the extent of positive outcomes for service

users, OPM developed the framework, shown below, recognising that key factors come in

the form of both personal resources and external conditions.

Within this paper, we have therefore also included case studies that illustrate the importance

of selected personal and external factors:

Case Study 5: The role of front line staff in supporting positive outcomes for service users

Case Study 6: The role of family and social networks in supporting positive outcomes for

service users.

This is not to say that these two factors are any more influential than other factors in

supporting positive outcomes. Indeed, our study concludes that in cases where the personal

budget is working well, the service user and their family will require positive input from allfactors outlined within the framework.

Overview and contents

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Please note: All names throughout this document have been changed to ensure the

confidentiality of our research participants.

Case Study 1: Increased sense of control for service users

Michael is 49 years old and has muscular dystrophy. He has limited mobility and uses a

wheelchair. In March 2010, he moved out of his parent’s home, after waiting many years on

the council’s housing list. On moving to his new home a social worker helped him to arrange

a personal budget which he uses to directly employ live-in PAs to support him to live

independently. Receiving a cash payment means Michael can exercise control over who he

shares his home and his life with.

Michael uses an online recruitment website to source suitable PAs which has made the

whole process an ‘absolute breeze’. On the website he can browse PA profiles finding out

where they’re based, their interests and experience, and their preferred shift patterns. Having

made initial contact via the website he can then arrange an interview, and subsequently atrial week. Over the first few months he will wait to see if things ‘stabilise and get into a habit’.

‘I mean that's one thing that's odd with the whole aspect of this, it's basically I'm sharing

my home on a weekly basis at first with people who are complete strangers.’

Reflecting on what makes a good relationship he talks about how small interpersonal details

and common ground become important and can add up to a positive experience:

‘For me someone with mutual interests is useful so you've got some level of conversation

or mutual interest, mutual tolerance. Personally I like to eat with my companion so

preferably a similar palate, although my palate is pretty broad.’

When he is recruiting he emphasises that it's not just a PA he's after, but a care companion – it's got to be someone he gets along with. Of one of his current PAs he notes:

‘Yes, I really like the guy who's on at the moment. He's into Top Gear and boys’ toys and

buying engine parts on eBay and we have a great old laugh.’

Before employing PAs directly Michael used a care agency. As well as being an expensive

way to employ people, he became frustrated by the sometimes poorly matched care staff

living in his home and the unexpected and excessive level of staff turnover. Drawing on

previous employment experience and a good grasp of IT, he decided to employ staff himself

using a payroll programme and a spreadsheet to manage the three or four PAs who work

one or two week shifts on an alternating basis.

When asked about the impact of having a personal budget he gives it ‘a five-star thumbs up’ .While the work involved in directly employing staff has been considerable he’s viewed this as

an opportunity to apply his skills and experience and take control and responsibility for his

affairs.

‘When they said 'Oh you can do it yourself or we can do it as a service’ it was like a red

flag and I thought all these changes are being done for me and arranged for me … I've

been waiting donkey’s years for this help, but I was thinking if anybody can do it

themselves I should, and by a large it’s been okay.’

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Case Study 2: Improved emotional well-being

Jon has muscular dystrophy and as a result of his illness has extremely limited mobility. He

has been ill for ten years, but has deteriorated significantly over the past couple of years to

the point where he requires a significant amount of home help.

At the time of the first interview, Jon was still awaiting for the first instalment of his cash

payment. He hoped that the tailored support would give him ‘the freedom to be the person

that I want to be, that I was born to be’. And at the time of the second interview, Jon is able to

recognise that the services he now receives go some way towards achieving this. Jon

receives a cash payment for upwards of 20 hours of domestic care and PA support per

week. This has decreased the amount Jon has to rely on his wife, and increased the amount

that he is able to do independently. As a result, he has regained a sense of dignity and

independence since the introduction of the personal budget.

‘I feel that I'm less of a burden and inconvenience.’

Jon noted that as the budget holder and direct customer of the care agency, he is in control

of the care he receives and can ask his agency to respond to his wishes, particularly in

relation to the carer that they send:

‘It makes a huge difference that I’m on a personal budget. I’m in the driving seat.’

Jon wants a specific type of interaction from the person who is delivering his care, and being

able to choose the carer enables this. He has always wanted a balanced and equitable

relationship with his carer, and does not want to feel awkward about asking for specific types

of help.

‘With my current carer, I don’t feel like I’m having to ask for help from somebody who

doesn’t really want to give it.’

Importantly, Jon does not believe that he would have been able to access this type of flexible

support from a council managed service.

‘Having had experience with the council over God knows how many years, I would say

they definitely wouldn't be able to do it as well. They only have so many staff.’

Asked about whether or not he would recommend cash payments to other disabled service

users, Jon responded enthusiastically:

‘They make someone feel like they’re part of normal society again. That's what I think it

is, I can't put it any more clearly than that. It's not something people should be frightened

of, and it will give them, if used correctly, more of a sense of dignity and purpose in life.’

Case Study 3: Improved access to social interaction

Anne, 19, has a learning disability. While she is very independent, and needs limited

personal care she does have significant communication needs. Anne is an only child and

lives at home with her parents. Anne and her mother use their personal budget to pay for PA

support and day centre provision for four days a week in the college holidays. Through these

services Anne has access to opportunities for increased social interaction, which has

impacted positively on the lives of the whole family.

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When the family first moved to Essex, their appointed social worker suggested the option of

cash payments. Upon hearing that the family were looking to purchase support, the teaching

assistant at Anne’s school suggested that she could provide this service.

‘It’s up to you to find the PA see, and because she worked for the school she had already

been police checked, so when she said she was definitely up for doing it then we thought oh well, this is marvellous’.

Both Anne and her mother are extremely positive about the impact of the cash payments and

the time that Anne spends with the PA. Anne prefers going to spend time with the PA, than

spending time at the day centre. Anne can do activities that she enjoys with her PA, and

through the time spent with her PA has developed independent skills, such as travelling into

town and spending money.

‘The PA, Emma, takes her down to town and to the cinema, she takes her out for lunch,

where Anne will buy her own lunch. She’s dealing with money, all sorts of creative things,

stepping forward and not back. The last thing I wanted was for Anne to be sat in the

house on a Playstation all day. They do whatever Anne wants to do. Anne thinks Emma’s

the best thing since sliced bread, because Emma will do things with her that I always

can’t’.

Anne also interacts with the family of her PA, as she spends a lot of time at their home. This

increases her social circle even further:

‘I mean, she’s just part of their family now.’

The combination of starting college and spending time with Emma has had a huge impact on

Anne personally.

‘She is more outgoing, which she wasn’t before … she’s more confident in lots of things.

Where before she wouldn’t sort of say anything, she would just obviously sit it out you

know, but now she … she’ll give her own views across and yeah, so I mean it’s really

positive.’

The care funded via cash payments has also impacted on her mother’s life and given her

more opportunities to socialise with her husband and their friends.

‘We have really benefited from it as well, we now get some respite. It was a friend’s

birthday the other month, so we asked Emma if she could have her on the Saturday

overnight. We can do things that we usually can’t do, going for a meal or you know,

spending a bit of quality time together, or with friends.’

Case Study 4: Improved family relations

Lucy, 23, has an undiagnosed physical condition which results in limited mobility and

dependence on a wheelchair. Her condition fluctuates considerably, so at times she needs

full time care. Lucy lives with her husband, Tim, and her young daughter. She began

receiving a personal budget in early 2009, which she uses to pay two friends who offer PA

style care and support, to provide much needed respite for her husband. Tailored and flexible

care has removed a significant amount of pressure on Lucy’s husband and improved

relationships within their family.

Prior to receiving cash payments, Lucy struggled with the inflexibility of council services.

Carers were not available to come early enough in the morning to allow her to see her

daughter before school, and she felt uncomfortable receiving personal care from strangers.

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As a result, she relied heavily on her husband. He gave up his job to look after the family, but

the isolation and pressure left him depressed:

‘I got to the point where I had to take Lorraine to school but I didn't want to because I

couldn’t handle seeing people. I had to go to the doctor and get tablets.’

Around this time, Lucy’s social worker suggested a personal budget, to use to pay close

friends to provide care as needed. Originally, the budget covered only three hours of care per

week. With this amount of support, her husband remained under significant pressure, so the

couple requested a review, which eventually resulted in an increase up to 15 hours per week.

The impact of this increase has been extremely positive. Tim talks enthusiastically about the

impact that this respite has on him. It allows him to pursue his personal interests and has

helped him recover a sense of self and purpose:

‘Believe you me, it's surprising, the difference it has made to me. I can actually do things

like I used to. I’m a very helpful person, I fix cars and I do building work and stuff like that.

I love working with my hands and that’s my relax time. So I've been able to actually have

a bit of that for myself, and not to worry about Lucy.’

Tim also notes the improvement in his relationship with his wife. The time apart gives him the

energy and space to be a husband and friend, as opposed to solely a carer.

‘Well, living with anybody 24/7, you get sick of the sight of each other! When you're

together 24 hours a day you do get to a point where even without the illness it would be

difficult to cope. But with the illness and the moods and the frustration, it made it very

difficult. Just to have that time away has made our relationship so much stronger and

better. Before I was a 24 hour a day carer, so how could I be a husband too?’

Lucy also notices the improvement in their relationship, thanks to the time apart:

‘Being apart gives you something to talk about. Before, we never had anything to talk

about, so we’d just snipe at each other, just for something to talk about.’

Furthermore, Tim now has time to spend alone with his daughter, to focus on her needs and

enjoy her company outside of the stress of the family situation.

Case Study 5: The role of front line staff in supportingpositive outcomes for service users

Kelly is in her early twenties. Her learning disability means that she has communications

difficulties and a lack of fine motor skills. The personal budget pays for some PA support andalso some activities that allow her to be more independent, for example, a sign language

course. Comments from Kelly and from her parents underline the importance of ECC staff in

securing positive outcomes from the use of her personal budget.

Kelly began receiving personal budget payments in April 2009. Initial comments during the

first interview underlined the positive impact that the time with the PA was having. And her

mother’s comments underline the integral role played by the social worker in securing

positive outcomes.

‘We’d have really struggled without Clare. She called us two to three times a week at one

point – coming up with ideas for the support plan. And when we’d thought of ideas, Clare

would do her homework – checking what’s allowed, and let us know what we could spend the money on.’

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These comments underline how the practitioner provided innovation and creativity, as well as

reassurance and information. But the family did not maintain a relationship with this social

worker, or with any social worker from ECC.

By the time of the second interview, the lack of contact was beginning to cause problems in

the family’s access to cash payments. When they did not receive the full amount of their cashpayment at the start of the second year, Kelly’s mother spent a lot of time calling the council

to understand why. Eventually they were told that they would have to re-apply for one

element of the budget. They reapplied, but did not then receive further funds until five months

later, during which time they had to self-fund. Kelly’s mother attributes the difficulties to the

fact that they no longer had a named social worker whom they could call on:

‘We had a social worker to start with didn’t we, and everything was hunky dorey until he

takes a back seat. He gets everything set up and then he takes a back seat and since

he’s gone, it's just fallen to pieces. It's gone from bad to worse hasn’t it.’

The frustration comes from not being able to contact someone at the council who can be

accountable for their case. In Kelly’s mother’s experience, ECC staff avoid responding to

requests and enquiries by phone, and tended to pass issues on to other team members:

‘They just keep passing the buck don’t they, saying that somebody else, somebody this,

that and the other …’

At the time of the second interview, Kelly’s parents noted how keen they were to get next

year’s review booked in as early as possible, so that if there are similar delays next time then

the family won’t be left without their cash payments again. Knowing how much the personal

budget will be allows them to plan how they will spend the money hat they will receive.

Case Study 6: The role of family and social networks insupporting positive outcomes for service users

Derrick, 57, suffered a severe stroke about three years ago. He now has impaired mobility as

well as cognition and speech problems and requires domestic care as well as rehabilitation.

Derrick receives a cash payment and is supported to make the most out of this resource by

his wife and social networks.

Both Derrick and his wife note that council run services were inappropriate. Immediately after

his stroke, Derrick accessed council support for stroke survivors, but was distressed to be

placed with older people. Since receiving a cash payment Derrick has been able to access a

wide range of tailored services, and has derived significant physical and emotional benefits:‘He has improved emotionally and everything, and things are improving, but I think that’s

because of the input we’ve had …. He needs the practical and emotional support he

receives. The things he does provide structure to his day – community care can’t offer

him that.’ (Derrick’s wife)

Derrick’s ability to access tailored services, and to achieve positive outcomes in terms of

physical health and emotional well-being are driven by the fact that he can rely on support

from his wife and their social network.

For example, Derrick and his wife know a neuro-physiotherapy practitioner, who they can

pay, through his personal budget, to support Derrick’s rehabilitation:

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‘Basically we used to go skiing with her and her husband and when I’d had my stroke,

you know [my wife] said to her, could she do some things for me because it was her line

of things, because she understands people that’s had strokes.’

Secondly, another friend of the couple, who used to be a head teacher, visits Derrick every

day to help him re-learn to read. This support is not paid for through the personal budget, butDerrick’s wife believes this support helps Derrick to get the most out of the other care he

receives via the personal budget, such as the stroke rehabilitation service, Headway:

‘The work Faye does with Derrick to help with his reading and writing really compliments

the work which Headway do with him.’

Thirdly, Derrick sees a fitness trainer, recommended by another friend of the family, who is

specialised in helping people with physical disabilities. These friends have a gym in their

garden, which Derrick is allowed to use with the trainer.

Furthermore, Derrick’s wife is also supported by their social network. She receives help

managing the budget from a friend who used to be an accountant. The friend was able toadvise Allan’s wife on how to set up a budget management spreadsheet on Excel, support

which has been particularly important since the budget recently increased from £5,000 to

£25,000.

Through all these forms of support, Derrick clearly evidences the value of a service user’s

social capital in maximising positive outcomes from a personal budget.

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personalisation briefing 5 - a collection of case studies

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