James’ story

With thanks to the Shared Lives scheme and the household involved, below is ‘James’ story, which illustrates that with the right planning, investment and back up, Shared Lives can work for people who have been labelled ‘complex’ or ‘challenging’. We are keen to talk with colleagues involved in the Transforming Care agenda about the potential for Shared Lives as a route out of hospital for people with learning disabilities:

After a lengthy stay in a residential hospital for people with learning disabilities, James was discharged home with depo medication to help to control psychotic episodes. On his return home, James was abused by a family member. As a result, James was taken to a place of safety by the police. He was then given future support and accommodation options which included Shared Lives.

James decided that Shared Lives was a good option for him and was matched with a Shared Lives carer called Phil. Phil already had one person living with him in a Shared Lives arrangement and he also had a lot of experience. He had previously supported adolescents as a foster carer and was experienced in supporting people with ‘challenging behaviour’.

Phil supports James to experience lots of new things, including supported employment, independent travelling, grey hound racing and fishing. James went on holiday with Phil and his family and joined in with all that they did. They enjoyed this break together and it provided them all with respite from day to day life.

Whilst living with his Shared Lives carer, James’ depo medication was assessed and discontinued due to the risk of long-term side effects. His mental health deteriorated and he returned to having periodic psychotic episodes. When James is unwell which has been occasionally, he is readmitted to hospital, sometimes under section.

When James is well he lives happily with Phil. He has a clear support plan, with additional Shared Lives support carer input to enable Phil to take regular breaks. James knows this person well and her support is flexible, depending on James and Phil’s needs at the time. For example, sometimes she moves in so James continues to live at home when Phil goes away, which means minimal disruption to James’ home life. At other times James can go to her home, where she provides day support and overnight respite. James also has regular input from the community learning disability nurse and community psychiatrist.

James’ Shared Lives scheme worker is honest in saying that the Shared Lives arrangement can be challenging at times especially when James’ mental health deteriorates. But with the good support systems in place which are reassuring for James and Phil, both value the family life their share and neither could imagine James living anywhere else.