It was my slightly scary privilege today to help open up the excellent People Helping People event hosted by Nesta and The Cabinet Office today, which saw a discussion involving around 300 people on how to bring social action – people helping people – into mainstream thinking about public services, rather than seeing it as peripheral, or in terms of a stark choice between protecting professional services, or relying on volunteers and hoping for the best.
Here’s what I said:
Adult social care has arguably done a lot more than healthcare to end its reliance on big buildings as the places where support is provided. But whilst many more disabled and older people are supported in ordinary houses, on ordinary streets, we’ve learnt the hard way that community isn’t a place, it’s a set of relationships. People with learning disabilities are increasingly living in ‘community settings’, but many lack friends, and even experience hate and so-called mate crime. We also have an epidemic of isolation amongst housebound older people which professional support visits alone can’t fix.
Shared Lives carers are unique because they are trained and paid as part of a regulated social care service, but they share their own homes and their family lives with the adults they support. They are not paid by the hour – there is no clocking on and off. They are carefully matched with one or two individuals by their local Shared Lives scheme and they treat that person as part of the family, introducing them to their own family, friends and neighbours, so that the individual feels not just safe and supported, but valued and like they belong.
When Paul, who has a learning disability, moved in with Shared Lives carer, Sheila and her husband, Sheila helped Paul in many practical ways which more traditional services had failed to offer during almost fifty years of support. She helped him address longstanding health issues, and to buy and ride his first bike. But most importantly, she got to know him well enough to understand, although he has little speech, that his biggest dream was simply going out for a walk by himself. Sheila helped Paul with the practicalities of road safety and public transport, and she introduced him to her many friends and neighbours, so now Paul can safely go for a walk by himself precisely because he is no longer alone, he has friends.
Half of the 12,000 disabled and older adults using Shared Lives in the UK are living with their Shared Lives carer as part of a supportive household.
About half, such as older people with dementia, visit their Shared Lives carer for day support or regular overnight breaks in a familiar, homely environment. Shared Lives is being developed as a home from hospital service, an acute mental health service, and even a service for ex-offenders.
There are nearly 8,000 Shared Lives carers in the UK, recruited, trained and approved by 152 independent local schemes.
People using Shared Lives consistently report they make friends. Half go on their first ever holiday; a quarter join a club not exclusively for disabled people for the first time. Inspections show Shared Lives generates a tiny number of safeguarding concerns and alerts. It is also cheaper than other forms of care: on average £26,000 a year cheaper per person for people with learning disabilities. Whilst there is a scheme in almost every area, there remains a sixfold variation across the regions. If all areas caught up with those using Shared Lives the most, the number of users would triple to 36,000, immediately saving £150m a year. We would go further still: wherever long term support and accommodation is needed, an offer based in ordinary family homes should be one of the choices.
People cannot provide in depth support to vulnerable people without payment, training and back up, but Shared Lives demonstrates that it is possible to combine the paid and unpaid, the professional and the personal, through making new use of family homes, instead of building expensive institutions, and nurturing ordinary people’s skills and compassion, rather than relying solely on professionals to replace or mimic friendship.
We are told frequently about social care which doesn’t feel very social nor very caring. Some believe that community action only happens when services and government get out of the way altogether. Shared Lives suggests an equally profound but more subtle shift – an approach which needs infrastructure, back up and payments, but which nevertheless treads lightly on people’s lives, and which gives everyone involved the space and trust to think and act at a human scale.
We must stop building services and systems which are a poor fit with our families and communities. Instead we need to train professionals to have the confidence and humility to recognise that their role is a vital – but small – part of a much wider support ecosystem. It’s the health of those fragile ecosystems, not the efficiency of our hospitals, which will ultimately decide whether our health and care system survives, and whether the quarter of our population now living with a long term condition can live good lives in good places.
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