In order to capture some of the hard to measure impacts of Shared Lives, Shared Lives carers were asked for the number of service users they have cared for over the last five years who had done a list of eight activities for thefirst time. There were just over 80 respondents, who between them cared for 500 – 550 individuals. Many of the carers had had just two or three long-term arrangements with the same people for many years, while others who provide short breaks had cared for a larger number of individuals. On average each Shared Lives carer had supported just over six individuals over the five year period, demonstrating a high level of consistency of support. The percentage of individuals using Shared Lives who, as a result of Shared Lives, did the following for the first time in their lives is as follows:
1. Learned a household task: 35%
2. Carried out a personal task: 35%
3. Went on holiday in the UK: 30%
4. Went on holiday abroad: 16%
5. Found a boyfriend/girlfriend/ partner : 12%
6. Joined a club which is not exclusively for disabled people: 26%
7. Started a job: 4%
8. Started volunteering: 13%
We also asked people how many of the individuals they supported had made new friends through their involvement in Shared Lives:
- 30% of service users had made one new friend
- 32% of service users had made two to four new friends
- 34% of service users had made five or more new friends.
This was not a scientific survey (the sample was self-selecting, not representative and self-reporting) and we do not have comparative data on other forms of care. However, it is striking that significant percentages of people using Shared Lives learn to do ordinary independent living tasks which they have not learned in other settings, despite many people using Shared Lives for the first time in later life. Almost half had been on a holiday of some kind for the first time in their lives through Shared Lives. 17% had entered work or volunteering for the first time. A quarter had joined a club or group which is not specifically for disabled people for the first time. These findings reflect extensive anecdotal evidence and the findings of inspections which find that Shared Lives schemes are consistent on outcomes such as living an ‘ordinary life’. As reports on home care cited above make plain, many forms of social care struggle to enable people to increase their circle of friends, despite friendships being a key indicator of quality of life. Shared Lives carers report exceptionally strong outcomes in this area. The outcome measuring tool we intend to commission and make available to all schemes will provide a more robust route to gathering comparative outcomes data.
57 respondents used the free text box in our survey to add additional information about achievements. None reported negative outcomes. Here a few of my favourites:
“[Shared Lives] has helped their journey from an inmate in a mental institution to a free, active and happy life. a person who now has a girlfriend, regular contact with his family and enjoys life as any senior citizen should – he is happy! :)”
“One of my service users learnt how to ride a bike for the first time ever. This was mainly through our children encouraging him. Both our service users are happy and really settled with our family. They both now that they have a caring family who they are now very used to and this has only helped them in their socialising and extending friendships.”
“One of my ladies was terrified to go outside. She can’t read, write, tell the time and has no concept of time. She had never travelled alone. She now accesses the public bus service herself alone on foot, crosses busy roads, gets on the right bus and gets to college alone and returns alone. This lady is blind in one eye and has a cataract in the other. She has made lots of friends of her own. She has a voluntary role in a cafe taking money and orders as well as making food and clearing away.”
Many of the stories are of very ordinary life experiences: the kinds of small breakthroughs such as someone learning to wash their own hair, or having a proper birthday party with a cake for the first time. They are achievements which would otherwise remain invisible to the outside world but which can be hugely important for the individuals involved. They are often changes which arise from the Shared Lives carer thinking about what people can do, whereas before people have focused exclusively on what they can’t. When you make that change of attitude, all sorts of things become possible for people: “[X] has developed the confidence to helm a narrowboat on the Stroudwater canal.”
Escaping the invisible asylum 