How many social care workers does it take to change a lightbulb?

I spoke at GovToday’s Social Care conference yesterday on ‘rethinking personalisation.’ My argument you won’t be surprised to hear was not that we should re-think whether personalisation is a good idea, but that we still have more to do in really understanding what good care and support as part of living a good life really looks like. I started by suggesting that when I talk to policy makers and when I talk to people who use services and front line workers it can seem like there are two different worlds. In one world, anything is possible. We can make savings whilst tailoring support to what people want and helping people find good lives. The other world feels at times like it’s full of cuts, gaps, unmet need and failures in even basic care and safety. You could say that just shows how out of touch with reality the people dreaming of personalisation are, but you can find real people living real lives in both worlds.

I believe that a lot of the people living in the world full of possibility and who have found many of the resources they need, get to live in that better world not because they live in an area where there is endless public money (not sure where that would be these days), but because they have found other kinds of resources, including being supported to find and build their own resourcefulness. Often when people are able to live lives which feel whole and not fractured, another pair of very different realms – the realm of services and the realm of families and friendships – have found a way of complementing each other, rather than ignoring or fighting against each other.

The Joint Committee which looked at the draft Care and Support Bill reports next Tuesday. I’m hopeful that it will recommend that the Bill does more to create that alignment between paid and unpaid, formal and informal. If it does, I think that the Bill and last year’s White Paper could be seen in future years as a turning point for social care, and perhaps for attitudes to public services more generally. This won’t be about cutting existing services and hoping for the best. But it will be about a system which

The right to live untidily

I chaired two lively fringe meetings at the Lib Dems and Conservative party conferences at the invitation of the ResPublica think tank. Both discussed the relationship between choice and making social care personal. Most people at these discussions were positive about the principle of being able to make choices about services. One attendee pointed out that “those with least control or power should have the most choice” and there was concern about the extent to which cut backs in advocacy services were stymieing attempts to redress the power imbalances in our system, or replacing them with new power imbalances and bureaucracies, or even “new lies”, in which people had the illusion of choice, but no new services from which to choose. There was also concern about the “lie” of offering choice without responsibility. Council and NHS Finance Directors remain legally responsible for balancing budgets and are understandably reluctant to create a system in which individuals might be able to make expensive choices which take no regard of limitations on resources.

One way past that impasse is to recognise that a policy of introducing personal budgets and Direct Payments does not, on its own, change the status of people who use services. Discussions can still be about what “we”, the expert professionals, are going to let “you”, the service user, have to meet your needs. Instead, we need to create a system of shared responsibility for the use of resources and this is often done best where individuals are helped to pool budgets, or to come together with community groups, so that there can be a collective discussion about how people will make best use of all kinds of resources, including money, but also including people’s time, and the collective expertise of people who use services, their families and communities. The key to a good life is not just what we choose to receive, but also what we choose to contribute to those around us.

One participant told a story to illustrate how far we can sometimes be from that picture. An older person was entitled to a Direct Payment to buy support. Her pet dog

Clients, service users and citizens

Community Care has been running an interesting survey on what workers and people who use services think the latter should be referred to as. Andy McNicoll’s interesting blog about it is here. A third of workers in social care think that “client” is best, with “service user” coming in a close second. “Person” and “person who uses services” made a showing, with “customer” and “patient” (thankfully) in the minority, although a little more popular than “citizen” at 1%. Community Care didn’t get as many responses from people who use services as they did from workers, but those who did respond showed a strong preference for “service user” over “client”. If that survey could be repeated with a bigger sample size, it is a good reason to ditch “client” for good.

What I found most interesting was the reasons given by workers for preferring “client”, which tended to be about its connotations of professionalism (for them) and comparisons with other (higher status?) interactions, such as solicitor/ client and financial advisor/ client relationships. Some also felt that “client” was more honest and accurate about the nature of the relationship, whereas others thought it ( and “customer”) had positive implications around the individual’s choice.

There are problems with all of the terms. “Client” and “customer” are taken from commercial transactions in which someone purchases something from a professional, so there is no sense of a relationship of equals, in which both parties contribute to the intervention and have some responsibility for the outcome. In other words, no sense of “co-production”. Trying to address this is hard: “co-producer” is into doublespeak territory – a bit like a coffee shop calling its modestly-paid employees “partners” (which works fine, however, for John Lewis, because its workforce really does have a partnership with them and shares in their profits).

“Service user” brings

White Paper highlights Shared Lives and micro-enterprises

Today’s social care White Paper highlights our members’ Shared Lives and micro-enterprise work as ways in which the social care system can move from a crisis-only service, to one which is preventative and focuses on people’s well-being and how connected they are with those around them. It also notes that Shared Lives can help people live better lives whilst saving on average £13k per person, per year. If every region used Shared Lives as much as the North West of England, the saving in England alone would be £155m per year.

Here’s our press release:

New figures show opportunity to save £155m pa when people with learning disabilities move out of Winterbourne View style ‘hospitals’ into family homes.

Social care White Paper endorses the Shared Lives approach.

Although little-known, around 8,000 registered Shared Lives carers now share their family and community life with an adult who visits them instead of visiting a day centre, or moves in with them instead of living in a care home. Shared Lives outperforms all other forms of adult care in government inspections and is also cheaper, but remains scandalously under-utilised.

Today’s social care White Paper highlights Shared Lives as a key part of achieving a more community-based care and support system, which relies less on traditional paid-by-the-hour services.

New analysis of NHS figures by Shared Lives Plus shows huge regional variation in the use of Shared Lives. In the North West, Shared Lives represents 18% of all live-in/ residential learning disability support, whereas in Eastern England the proportion is only 2.5%. With each Shared Lives arrangement creating an average annual saving of £13,000, bringing every region up to the level of the best would quadruple the number of people with learning disabilities and other long term conditions living in Shared Lives to 16,000, saving the health and care system £155m every year and creating enough capacity to enable the closure of virtually all remaining ‘special hospitals’ of the kind seen in last year’s exposé of the Winterbourne View facility.

Alex Fox, Shared Lives Plus Chief Executive said: “Whilst social care often only makes the news for the wrong reasons, Shared Lives remains the sector’s best-kept secret. We know that people with learning disabilities can live happier, more fulfilled lives in ordinary family households than in large institutions, so it is scandalous that the NHS and some councils continue to spend our money on completely inappropriate institutions. In one recent example, a Shared Lives arrangement costing around £400 per week was used instead of a secure facility costing £5,000 per week. In another, a man previously labelled ‘too challenging’ to live outside of a residential unit he said he hated, moved to live successfully with a Shared Lives carer, saving the council £45,000 a year in the process.”

There is also huge untapped potential for developing Shared Lives with new groups of service users to make even greater savings. Whilst 23% of Shared Lives users in London have a mental health problem, five English regions offer no Shared Lives arrangements whatsoever to people with severe and enduring mental health problems, with institutional services still the norm.

Sian Lockwood, Chief Executive of Community Catalysts said: “The Shared Lives sector has doubled in size over six years but there are still only 4,310 people living in Shared Lives households. Half a million people live in residential care homes. Some councils predict that the cost of adult social care alone will represent 100% of their budgets within a few years, unless they make radical changes to the way they support vulnerable people. There is a Shared Lives scheme in nearly every council area in the UK but whilst some areas are currently doubling the size of their local scheme, others remain largely unknown and under-used.”

Alex Fox added:

Personalisation for offenders?

I’ve blogged before about the incredible achievements of a small number of Shared Lives carers who specialise in supporting offenders with learning disabilties or mental health problems. We are working with Manchester Metropolitan University and others to attempt to scale this kind of care and resettlement up nationally. Here’s my column about personalisation in Guardian Society: http://goo.gl/0ASN0.

There is a longer piece about lessons for other sectors from the personalisation of social care published with the RSA: http://goo.gl/fD6NA.

A better front door for social care

This week we’re really pleased to be publishing, with some of our closest allies, a paper which sets out how the government could make a better ‘front end’ for social care. In other words, what happens when someone first encounters the social care system. It uses real people’s experiences of assessments and discussion about eligibility for services to ask what those processes do to a person’s independence and to their relationships with their family and community. At the moment, whilst most of use the NHS fairly regularly, and our local GP is often a familiar and friendly face for the NHS, our first experience of social care is usually in a crisis, and can be first and foremost about how much money we have (Are you poor enough to be our problem?) and about our needs, rather than our choices and the resources and relationships we might be able to draw on (Are you needy and vulnerable enough to be our problem?).

The imminent (early July now??!) White Paper is an opportunity to create a system which feels more like a partnership, and less like a battle.

The partners in the paper include ourselves, our sister organisation Community Catalysts, In Control, Inclusive Neighbourhoods and Partners in Policymaking. We’d all be interested in your reaction to these ideas – if the government is really going to create a friendlier, more cooperative and collaborative social care system out of the funding-squeezed battleground many experience, they are going to need all the ideas and help they can get.

See “Redesigning the front end of social care” here: http://www.sharedlivesplus.org.uk/en/publications-resources/free-publications/policy-research-campaigns/

Local Area Coordination

How can we kick start radical change in a care and support system which is suddenly starved of money? Perhaps an equally valid question is, “How can we not?” This second question can only be asked if we genuinely believe that there are ways for communities to face their challenges which aren’t entirely reliant upon services.

Local Area Coordination (LAC) is now at the core of care and support in Australia, after twenty years of development and numerous evaluations. Ralph Broad, who has worked in Australia and the UK remarks upon the fact that outcomes in Western Australia are better than those in the UK, despite the fact that even a recession-hit UK is still better resourced than Western Australia has ever been. LAC is a way of recognising that people are not passive “clients”, “service users” or “customers” of a social care system. It puts professionals in new roles: working alongside people. Local Area Coordinators in each small locality have an open door, access to information and small amounts of funding, but most importantly a remit to nurture local solutions and keep people strong. They help people to access services where they are the only option, but they see services as the last thing to consider, not the first.

LAC is not an initiative to ‘drop in to’ the existing system, with its preoccupation with gatekeeping services for those deemed needy and vulnerable enough to qualify. It is best used as a way to transform the whole system, starting with

Shared Lives in Harrow

During the Queen’s recent visit to Harrow she was presented with a book of photographs of inspirational people in the borough, including Robert Ward, who has learning difficulties and is part of Harrow Council’s Shared Lives scheme. Mr Ward, who will celebrate his 50th birthday in May with a visit from his parents from New Zealand, was looking forward to the visit: “I am really excited about meeting the Queen. I have got a Union Jack tie to wear.” Mr Ward lives with Shared Lives carer Bob Gilbert, with the two sharing family and community life rather than Mr Ward living in a care home.

Bob, who is a similar age to Robert and has a care background, said: “Robert has had such a great year. Last year, his friend died and he had a big change by moving here, but now he has so much more independence. He is like one of my family and my friends are now his friends. He has done a travel training scheme so can now get the bus and walk to different places by himself and is training two days a week at a nursery, growing plants. The difference between his confidence now and what he was like last year is incredible.”

This story is from the Harrow Observer.

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 14^th 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

All parties have to work together this time

As a member of the Care and Support Alliance, Shared Lives Plus was one of the signatories of the letter in today’s Telegraph which has generated lots of coverage across the media. The letter says,

SIR – As a society we face a growing care challenge. We should celebrate the   fact that we are all living longer lives, particularly disabled people and   those with long-term conditions. But the unavoidable challenge we face is   how to support the increasing number of people who need care. It is a   challenge which we are failing to meet – resulting in terrible examples of   abuse and neglect in parts of the care system.

This comes at huge cost to the dignity and independence of older and disabled   people, but also to our society, family life and the economy. An estimated   800,000 older people are being left without basic care – lonely, isolated   and at risk. Others face losing their homes and savings because of soaring   care bills.

Disabled people are unable get the support they need to live their lives   independently and be part of society.

Businesses are losing increasing numbers of experienced staff who are forced   to give up work to care for older or disabled relatives. These carers can   then be pushed to breaking point, providing round-the- clock care. Our NHS   is also paying the price, as a lack of support leads to avoidable hospital   admissions and then keeps older and disabled in hospital beds because they   cannot be cared for at home.

We have a duty as a nation to change this – but it requires political   leadership.

This summer, the independent Dilnot Commission into Funding of Care and   Support published its recommendations. In response, the Government has   committed to publishing a White Paper on Social Care by April. With new   cross-party talks on the future of care, we are closer than ever to reaching   a new consensus.

We urge the Government and the other party leaders to seize this opportunity   for urgent, fundamental and lasting reform: delivering a social care system   which can provide the well-funded and high-quality care and support we would   all expect for ourselves and our families.