At our annual conference, our Chair Richard Jones and I always hold a discussion session with Shared Lives carers and others, which is an opportunity for people to make sure we have the issues which matter most at the front line on our radar. Here are some of the issues which came up: they give a sense of why Shared Lives is valuable, what makes it unique as a way of supporting adults, and also some of the challenges and the ways in which we do not always value and back up Shared Lives households in the ways we should.
We heard from a Shared Lives carer who supports people with significant mental health problems. The people living with her could easily be living in medical institutions without her support and doubtless her care saves the NHS a fortune. During a late night crisis, she shared the poor response she had received from the local mental health crisis team. I won’t share the details, but the theme was a frustratingly common one: the value of Shared Lives comes from the fact that it occupies a hard to define space somewhere between ordinary family life and a service, at its best, taking the best of both worlds. But too often, the rest of a service system sees someone settled in Shared Lives, breathes a sigh of relief, and disappears. Good Shared Lives schemes offer well-planned out of hours support, but sometimes the response needed in an emergency needs to come from another part of the system, and these teams are not always even aware that Shared Lives exists. We believe that Shared Lives carers should be seen as partners by health and care professionals, with emergency plans in place to ensure that they can get an effective response. This is essential to make Shared Lives fair, safe and sustainable for everyone involved.
We also talked about endings. Shared Lives arrangements can come to an end for all kinds of reasons: the person may have achieved their goal of getting their own place, or their circumstances may change. Things may change unexpectedly in the Shared Lives carer’s household. People live together for decades, sometimes until one of them dies. There is no set retirement age and I meet Shared Lives carers who are now in their 80s. Sometimes, an individual who has lived for many years with a Shared Lives carer who is now ready to retire moves in with their original Shared Lives carer’s adult daughter or son, whom they may have known all their lives. But complete continuity of that kind is not always possible. The Shared Lives carers we heard from felt that the difficult topic of endings is one we need to talk about more.
Endings can sometimes be enforced by social workers who assume that the individual’s goal should be to move into independence. Sometimes this is right, but at others, we see people who were happy in a household they have come to regard as their family home being obliged to live by themselves, sometimes unhappily or worse. Not many of us dream of living alone, so we should be cautious about assuming that is always the right thing for someone with a learning disability or another support need and we should listen to their wishes and goals, without making assumptions about concepts like dependency, which we may not be so quick to apply to our own lives.
At other times, the inevitability of an ending is ignored until it is too late to plan effectively for it. Some Shared Lives carers say that they feel guilty about the idea of ending, even though they are ready to end their active caring role and perhaps need to for health reasons. We have more work to do in this area: ensuring that people living in Shared Lives households feel supported to talk about choices, including endings, and can plan for the changes they dream of as well as the endings they wish will never happen.
Escaping the invisible asylum 