If I could have picked a family, it would have been you

I was privileged to take part in our Scotland conference this month, at Stirling University. As usual, the Shared Lives carers and service users made the day. We heard from Ethel, a Shared Lives carer for 25 years, and from her daughter, who has also become a Shared Lives carer, as have both Ethel’s other children, now all living in different parts of the country. The first gentleman Ethel supported came to her for 15 days, when his Dad was ill. His Dad sadly died during his stay and he decided that he would just “stay with Ethel until I get married”. He still lives with her. Having had an entirely sedentary life at home, he discovered a love of all kinds of sport and a new confidence to go out and about. He still hasn’t got married, but does have a steady girlfriend.

Megan, in her early 20s, reflected upon her experience of being supported by Lynn, a Shared Lives carer with the Fife Supported Lodgings scheme which arranges family-based care for care leavers. Megan, who has lived independently for a few years now, said “I would have been an absolute wreck without them”. Lynn said, “If someone had told me I’d be doing this work 10 years ago, I would have laughed at them. I’d raised kids and that was enough. After ill health, I was trying to get back into work when I found about Fife Supported Lodgings. A highlight for me was when the first young man I supported said to me, ‘If I could have picked a family, it would have been you.’ Now all my family are involved: when Megan was between houses with a new baby, she stayed with my daughter for a couple of weeks and we’re all going to Megan’s daughter’s first birthday party later on today.”

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When is Shared Lives just shared living?

Here in the Shared Lives sector we’re used to confusing the people whose job is to fund or purchase social care for the local council or NHS Trust. Shared Lives doesn’t fit the usual boxes, it’s not funded quite in the normal way, it has different boundaries and expectations, and so on.

At a recent meeting wiht the researchers at Kent and LSE Universities (the PSSRU unit) who are beginning to research the outcomes and costs of providing Shared Lives to older people, we started to discuss the small but perhaps growing number of older people who don’t have eligible social care needs (ie needs which the council will pay to have met), but who are interested in living as part of a family.

Some have arrived at the Shared Lives service via a mental health service because living in isolation has resulted in depression. Others simply don’t like the idea of continuing to live alone in a large house with family at a distance and are planning for a future when they be less independent. They have the option of selling their large house to move into sheltered accommodation, but aren’t sure that is what they are looking for. Continue reading

Ditch ‘prevention’!

This is the last blog in a series inspired by a seminar with social care leaders which looked at the question of citizen and community-led change.

It became clear early on in the discussion that some people had arrived expecting a debate about ‘social capital’ and community development, whilst others had been expecting a debate about early intervention and prevention. Personally, I believe that both of those concepts do, or should, mean much the same thing. Put another way, soon after I agreed to become the ‘co-lead’ on prevention and early intervention for the social care White Paper, I decided that given the choice, I’d drop the language of prevention and early intervention entirely and replace it with the language of well-being, empowerment and citizen-leadership.

Sue Bott of Disability Rights UK reacted to talk of prevention like this: “People who use services don’t want to be divided into the fixable and the not-fixable”. The problem is that prevention is all about people’s problems (will you be a drain on resources?) whereas the things ‘preventative services’ wish to achieve, are best achieved by focusing on people’s gifts, skills and assets.

‘Early intervention’ is just as bad: if the territory of ‘prevention’ is all about tackling isolation, helping people to connect and empowerment, those are outcomes which are just as relevant to the person who has just started to become less mobile in later life, the person with a life-long physical impairment or the person at the end of their life. No one wants to be lonely: whatever else is going on in your life, being lonely is miserable and worse for you than smoking.

So I think it’s time to move on from thinking about how to save money through reducing NHS admissions, which might involve coming up with wheezes which simply transfer the cost to social care, and instead think whole-person and whole-community. People will always need specialist responses and hopefully those responses will continue to become more coordinated, skilled and efficient. But the real gains will come when all services, whether they are used by people with ‘low level’ or ‘high level’ needs, think beyond meeting the present need and towards increasing the likelihood that the individual – and often their community – will be more knowledgeable, networked and confident in future.

If we can get that right, not only will more people be able to live a good life, with fewer trapped in a cycle of dependence and ‘revolving door’ use of crisis services, but savings generated will be more likely to be real, and to the public purse as a whole, not just to one sector or another.

New radicals?

This weekend, the nice people at NESTA included Shared Lives in an article you can read online (http://www.nesta.org.uk/news_and_features/britains_new_radicals/alex_fox_shared_lives)  and a mention in the Observer, under the heading ‘Britain’s New Radicals’. Shared Lives as a new form of radicalism is interesting. Whilst Shared Lives Plus was founded in the 1990s, Shared Lives isn’t a very new form of radicalism: it’s been a radical idea ever since the middle ages.

In the 14th Century, pilgrims came from all over Europe to the Belgium town of Geel, which has a shrine to Saint Dymphna, the patron saint of mental illness. Instead of building a large asylum for people with mental illness, the town organised itself into a ‘boarding out’ system, with pilgrims living with families in the town. That arrangement still survives in Geel today. It came to Scotland in Victorian times as an alternative to asylums and then returned to the UK in the ‘70s, where it quickly became predominantly a service for people with learning disabilities, particularly during the ‘80s when large numbers of people with learning disabilities moved out of long stay hospitals. Most moved into care homes, but some into the homes of people we would now recognise as Shared Lives carers. I was lucky enough to meet people who have been living together for 30 years on a recent trip to Bath’s scheme.

These days, Shared Lives carers have to undertake vetting, approval and training. The support and accommodation they offer is monitored by their local Shared Lives scheme. They don’t just offer long term live-in arrangements, but also short breaks and day support, particularly for people with dementia, who often prefer a regular, familiar visit to a Shared Lives carer in the carer’s own home than to use a large day centre.

However, although Shared Lives is now regulated, with its own rules and even tax arrangements, it’s never lost its radical edge Continue reading

A new Trustee for Shared Lives Plus

Richard Jones, Director of Lancashire’s Adult Services and our newest Trustee, says that when he thinks of Shared Lives, he thinks of a young man who used to live in services and now lives with a family and as a result he is loved and can give love. He matters and can contribute to family life. He is part of that family’s holidays, weddings and funerals. He has the opportunity to feel responsible for those around him, not just reliant on them.

We had our board and team planning day this week. It was fantastic to be part of a group of people bringing the same passion, but from very different viewpoints, to thinking about Shared Lives and other small community approaches to care and support. Part of the thinking was about how we ensured that Shared Lives and micro-enterprises became much better understood. We decided that our offer was about citizens, communities and costs: our members help people to become citizens, who can contribute in all kinds of ways, as well as receive great support. Our members build upon relationships and communities. And doing this isn’t more expensive than traditional care: increasing numbers of areas are using it as a way of bringing down costs whilst helping people to live better lives.

Some of the discussion was about the place of Shared Lives and micro-enterprises within the personalisation reforms (which I’ve written about a number of times below).

 I’m not sure it’s a coincidence that we latched onto personal budgets as the key driver for personalisation at a time when we are all more consumerist than we’ve ever been. And I’m sure it’s no coincidence that the rise of consumerism has been accompanied by a rise in loneliness and isolation Continue reading

Responsibilities, not just needs?

When I started working in social care, I remember being told about Maslow’s hierarchy of needs. Maslow represented human needs in a pyramid, with basic, physiological needs such as the need to eat at the bottom, followed by the need for safety, the need to feel loved and like you belong, with the need to “self-actualise” – to be all that you can be – at the top. He believed that you had to meet your base needs before you could pursue higher needs, with self-actualisation something you are only in a position to pursue when your physical and psychological needs are fully met. Maslow has been criticised from a number of directions: firstly, putting self-actualisation at the top of the pyramid reflects the aspirations of an individualistic society and particularly perhaps a particular male view of achievement. It was suggested that someone from a more collectivist society might value community acceptance above expression of self. Others have questioned whether there is any real evidence for human needs to be arranged hierarchically at all.

It’s always struck me as one of those ideas which hides a lot of dangers within its common-sense appeal. It’s a short step from recognising that it’s hard to pursue self-fulfilment when your basic needs are not met, to assuming that people who struggle with the most basic functions may not also have the “higher” aspirations. This is self-fulfilling: when people with severe impairments were placed in de-humanising institutions, it was often indeed hard for them to aspire to anything beyond meeting their basic needs and easy to write people off who were able to confound those expectations when they moved to a different environment (see A box of buttons, below).

And it’s not just collectivist societies who might question Maslow’s view of self-actualisation as being at the peak of human aspirations. Maslow saw sex as one of the base needs, Continue reading

Is there a future for building-based services

A colleague recently posted a question on a LinkedIn personalisation forum about whether there is a future for building-based services.

I think we are too simplistic when we come to make decisions about building based services, particulalry when it comes to whether to keep or close them. Such services actually have three distinct parts to them, and we need to make at least three separate decisions about them:

1. There is the building, which could be used in all kinds of ways by all kinds of people, including some of the people who currently use it, but also others in the community.

2. There is a set of services, some of which may be excellent, others less so. Some may be valued by some, but not all, of the current and potential users. Some may be best provided in the current building, others better provided elsewhere.

3. There is a set of relationships, some of which may be lifelong.

It is these relationships which are most often overlooked in decision making. This is why there are supermarket cafes which have become de facto day centres for people who are bored and lonely and missing their friends. People should have choices over their relationships. Day centres and the like reduce those choices by lumping everyone together, but so do approaches which assume that everyone is always best off doing everything on their own, or in ‘the community’, particularly when the community proves hard to find, or not very interested in them. There is often a lot of work needed on finding and forming people’s networks and communities, not just a ready-made community out there for people to slot neatly into.

People who use services and potential service users, and their families, should all have a say in planning to maintain and develop all three aspects of existing services, not just the most obvious aspects of them.