briefing 4: family, friends and personal budgets

Briefing paper 4: Family, friends and Personal BudgetsFindings from the third round of a three-year longitudinal study in Essex

September 2012

OPM252B Gray’s Inn RoadLondon WC1X 8XG

tel: 0845 055 3900 fax: 0845 055 1700 email: [email protected] web: www.opm.co.uk

http://www.opm.co.uk/

mailto:[email protected]

Briefing paper 4: Family, friends and Personal Budgets

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 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. ([email protected])

OPM page 1

mailto:[email protected]


Key points

Service users’ families and friends are an important part of determining the type and magnitude of impact of Personal Budgets. At the same time, they also often benefit from a number of positive impacts of Personal Budgets.

In the majority of cases, Personal Budgets are managed by service users’ family members. Family and friends are also often directly involved in providing care. 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.

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 that had been 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 by service users, or ensuring that the budget can be spent creatively and in a way that meets broader wellbeing outcomes.

Personal Budgets have played a big role in improving the emotional well being of service users’ family members. 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.

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. For some, this was a result of knowing that their relatives are happy with the care they are receiving or participating in activities which they enjoy. For others, the ‘peace of mind’ was associated with the eased financial burden that they experienced as a result of the support and care they were able to buy with Personal Budgets.

OPM page 2


Overview

In the current round of research, service users included in the sample had been receiving Personal Budgets for just over two years. Service users’ families and social networks continue to be an important part of determining the type and magnitude of impact of Personal Budgets. In the sections below we will consider:

What is the role of families and friends in making Personal Budgets work for service users?

What are the positive impacts of Personal Budgets on service users’ families and friends?

Role of families and friends in making Personal Budgets work

1. Managing Personal Budgets

Of the 29 service users that took part in this round of the research, only 5 were managing the Personal Budgets themselves. This tended primarily to be service users with physical or sensory impairments. For the majority of service users, budgets are being managed by a family member. Service users with learning disabilities in our sample all had their Personal Budgets managed by a parent whereas older service users and those with physical or sensory impairments tend to have their Personal Budgets managed either by a partner or a child.

As reported in round two of the research, a number of service users noted that older people who did not have a family member who was able to take responsibility for the management of the Personal Budgets would find the additional administrative burden quite difficult and that this in fact would make them less willing to opt for self-managed Personal Budgets.

2. Directly providing care

Service users also at times spend a significant part of their Personal Budgets on employing family or friends directly to provide care. Service users with learning disabilities and those with physical or sensory impairments were more likely than older service users to be employing family or friends directly.

For example, one service user with a learning disability has been able to directly employ her step father to be her full time carer and this had benefits as he knew how to communicate with her. Another service user with a physical or sensory impairment has been able to employ his daughter as his PA.

Having a consistent carer who understands their needs has meant that these service users are more happy and content and this has improved quality of life for the whole family. 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, because, for example as PAs they tend to go over and above what is expected of them:

"Because she's a friend as well and if we need her then she will come. She does lots more than what is essential to do, but that's down to her, you know." (PSI service user)

OPM page 3


Being able to employ a family member or friend who was liked and the service user felt comfortable with was found to be particularly important 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. This was 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)

For many, feeling comfortable and being familiar with the people that are employed to provide their care is an important part of receiving Personal Budgets.

3. Advocacy, advice and support

A number of service users also draw on family and friends for support, advice and information relating to Personal Budgets. For example, as in round two of the research, service users often reported employing providers that had been recommended specifically by family members or friends. Sourcing recommendations from family and friends meant that service users were likely to be very satisfied with their providers and the quality of care they were receiving.

"A friend recommended it, because we had tried everywhere and there were lots of places that my daughter and I went to see and we didn’t like." (Wife of older service user)

The family members of some service users with learning disabilities reported often drawing support, advice and tips from a network of other parents of young people with learning disabilities. Additionally, having access to a friend or family member who has worked in health or social care has been particularly helpful for some service users.

“The fact that I’ve been a close friend with Daphne for a long time, who’s been one of the pioneers of the budget system, so I’ve got a personal friend who I can regularly tap for information if I need it.” (Service user with PSI)

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 has become increasingly important in round 3 of the research where health needs have at times escalated or where reviews have been scheduled. It can involve ensuring that the Personal Budget covers the full costs of care needed by service users, or ensuring that the budget can be spent creatively and in a way that meets broader wellbeing outcomes.

These findings indicate that those service users with existing relationships upon which they can draw on for advice, support and at times the direct provision of care are in a better position to be able to make the most of their Personal Budgets than those who do not.

Impact of Personal Budgets on families and friends

1. Greater independence and freedom

In addition to the impacts of improved support for the whole family and improved family relationships which were identified in round two of the research, in the current round, Personal Budgets played a big role in improving the emotional well being of service users’

OPM page 4


family members. This was across all service user groups. 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. As one service user’s mother commented:

"It's made us a bit more independent and even now we could actually, if we wanted, jump in the car and go out for lunch because I know that Daniel won’t be home until 4pm... Near Christmas we've been asked out Sundays for lunch and over to people’s houses and in that case all I need to do is ring up one of the carers and say look, would you be available to take Daniel out this Sunday... so it has made a big difference in our life, definitely, which goes to lifting some of the stress that I've been feeling in the past couple of years really." (Mother of service user with LD)

Similarly, for one older service user who was described as having challenging behaviour by the relative interviewed, the extra care purchased by Personal Budgets meant that the service users’ husband was able to get out into the garden when the carer was there. As their daughter commented:

“I think that the extra money has helped because it's given mum extra care time, so my dad is 87 and it has helped with him having more time to himself when she has got care, because she's so controlling that she doesn’t even like him going out in the garden but when he's inside she doesn’t want him there either.”(Daughter of older service user)

In addition to giving service user’s family members more time to themselves during their daily lives, Personal Budgets have also enabled many to be able to plan for holidays.

“I think the big thing in the last year is that you know, if I have needed to go away for a weekend and I did manage three or four days skiing in January, then I can pay for somebody to come in and be with David at night time and so on.” (Wife of PSI service user)

One service user’s wife has also been able to take up part time employment because they have been able to employ the service user’s daughter as his PA:

"It's been brilliant, it's been absolutely brilliant. It allows my mum to get a little job for two days that Lucy came in. It allowed her to get a job and so it gave her freedom from not just being with my dad the whole time.” (Daughter of PSI service user)

2. ‘Peace of mind’

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. For many, this was a result of knowing that their relatives are happy with the care they are receiving or participating in activities which they enjoy. For example, the parents of one LD service user, who uses the budget to attend a day centre, told us how happy they are to see their daughter attend a day centre that she enjoys and where she is settled. They were very worried when she left college about how she would spend her time, and using the Personal Budget to pay for the day centre has eased that concern.

For other service users’ family members, the ‘peace of mind’ was associated with the eased financial burden that they experienced as a result of the support and care they were able to buy with Personal Budgets:

OPM page 5


"From my point of view it gives me peace of mind, because I don’t have to wonder how I could finance it because I'm on a limited amount, because even though I get an occupational pension, which is quite generous, this place costs quite a bit to run." (Husband of older service user)

“That has just taken so much of the load off of me, because I was you know, working all hours to finance what Alan had or is – was having before, which I was able to pass some of that – those responsibilities on to this budget." (Wife of PSI service user)

Using a Personal Budget to purchase care or to use as respite can also help to ease the stress and burden on relatives by helping them to feel supported in their role as primary carer. The husband of a PSI service user told us how he had become depressed after his wife became disabled and the care purchased through the budget has improved his emotional well being:

"It’s made a big difference, in my health for a start. The sense that not being alone anymore has been a god send to me, my health, and being able to actually go out on my own without having to worry, stress, consider, or be back by, or do this by, or – I have actually got a couple of days now which are mine. And man is that nice!" (Husband of PSI service user)

OPM page 6

briefing 4: family, friends and personal budgets

Documents