Twenty years on: naturally radical

It’s Shared Lives week this week, with local events at 152 Shared Lives schemes across the country to celebrate the incredible achievements of Shared Lives carers and the people who live with or visit them in their family homes. The week started with our sold-out England conference and 20th Birthday celebrations, which led me to reflect upon the history of Shared Lives.

We can trace the idea of sharing home and family life with people who need support at least as far back as 14^th Century Gheel in Belgium, when the town, which had become a place of pilgrimage for people with mental health problems, instead of building a large asylum outside of the city walls, decided to organise itself into a boarding out scheme which still survives today. Yet despite that 700 year history, this year, Shared Lives Plus was named as one of ‘Britain’s New Radicals’ by the Observer.

So we can’t claim that sharing your home and family life with someone who needs support is a new idea, but is it radical? I argued at our conference that Shared Lives carers are indeed radical. We are, I think, increasingly compartmentalised and isolated, as we try to manage the pressure of busier and busier lives and in many cases more demanding workloads. My partner and I find ourselves booking time with friends months in advance. My natural inclination is to have large walls between my work life, when I’m often away from home, my family life, and my ‘me time’ which usually involves reading or watching TV on my own when the rest of the family is in bed. People are often suprised to hear that there are about 8,000 Shared Lives carers in the UK, who have been radical enough to make caring for others not their job, but their lifestyle.

I think most Shared Lives carers would reject the notion that they are radical. He or she “is just one of the family” is something I hear very often. Sue Newton, our President, who was instrumental in founding our organisation and the sector in Liverpool in the late 80s/ early 90s, agrees and suggested at the conference that sharing your life is, in fact, the most natural of ideas.

So why does it seem so radical to so many people? This is partly because of the way that social care has developed. It has become more professionalised and often more specialised, and has competed for recognition as a skilled and complex role with other professions, particularly the medical profession. This article by Ian Birrell in the Independent describes how social care bosses are “killing kindness with red tape”. Birrell describes how fears of abuse get in the way of the “human warmth …at the heart of relationships between vulnerable people and their carers”. I think Birrell has identified part of the issue, which is indeed about organisations being risk-averse and seeing ‘professional boundaries’ as one way of reducing risks of abuse, or allegations of abuse.

But boundaries are also inherent in the professional/client relationship, in which an ‘expert’ needs to maintain ‘professional distance’ to dispense a service dispassionately to her ‘client’ or ‘customer’. Such relationships cannot be equal and so the mixture of ‘professional’ and ‘friend’ is, at best, based on a shaky understanding of both of those concepts. This separation is appropriate to some professional interactions: surgery or child protection investigations spring to mind. But one reason Shared Lives seems so radical is that it has not lost an ethos of equality between all those involved; an equality which has been professionalised out of other areas of the sector. The value of living in a Shared Lives household is that you are not just there to receive support, but to contribute to family and community life. This point was put passionately by Judith at our conference.Judith works for Shared Lives Plus, supporting Shared Lives carers and is one herself. Judith’s household is built by all those living within it, with give and take from each of them. Whilst Birrell recounts stories of care workers being disciplined for trying to be ‘friends’ as well as ‘professionals’, I recall one Shared Lives carer, who is visited regularly by an older couple, that her kids pop in to that couple’s home on their way home from school. A domicilary care agency hearing that would see a dozen risks of abuse and allegations. They may well have sacked the carer. But Shared Lives is inspected by the care regulators on whether arrangements feel like ‘ordinary’ family life, so it was entirely appropriate and of course, may well have added huge value to the ‘service’, because no one was paying the carer or her children for that extra contact with potentially isolated older people.

Mainstream social care’s ethos is not unique. It reflects what has happened in many professions, and in the wider world, where, in John McKnight’s words, we have “grown doubtful of our common capacity to care”. That is why something as natural as believing that those you care for also have something to contribute to your life has come to seem so radical. As Shared Lives continues to grow, there will be a fight back I believe from professionals and provider organisations, uneasy with the evidence that, for instance, someone previously judged so ‘challenging’ they had to be ‘cared for’ by highly trained professionals in a secure institution costing thousands a week can move to live happily in an ordinary family home, with someone who may have no formal qualification and at fraction of the cost. We will always need qualified professionals to provide specialist interventions, but those interventions should be built around people’s lives, rather than the other way round.

As we show no signs of becoming less busy, isolated, atomised and compartmentalised as a nation, our challenge for the next twenty years of Shared Lives Plus is to help the concept of Shared Lives seem less and less radical.