Turning on the light

We’re very grateful to Leanne, who has written this moving and powerful account of her Shared Lives journey with the Blackpool Shared Lives scheme. Thanks Leanne!

Leanne writes:

When I was asked to do this for Shared lives week it took me a while to write, not because I didn’t want to write it, mostly because I didn’t know what to say. What do you say about the service, the shared lives carers who helped you to grow into the person you could only dream about four and a half years ago?

Anyone that knows me, will know that one of my favourite hobbies is to write stories and tell stories to anyone who will listen, so if you don’t mind, I would like to tell you one now…

It all began many years ago when I was 10 years old, I had this dream of becoming a social worker and despite my disabilities I worked as hard as I could (and sometimes not at all) throughout school and college in the hope of one day achieving my dream. –How is this all relevant you ask? Let me tell you…

In the January of 2012, I was diagnosed with a rare medical condition on top of my already complicated disabilities. The condition took over my life and put a stop to my dream. Not only did I now have a medical condition, which I couldn’t control, I had increasing mental health issues. I don’t mind sharing, suicidal thoughts were becoming like an old friend of mine. My condition and my mental health state was putting enormous pressure on the relationships I had with my family. In the January of 2013, I found out just how much. I was admitted to hospital for what was supposed to be routine treatment, a few days later I was visited by a social worker who explained to me that due to a breakdown in the relationships between myself and my family, I was now homeless.

It took a lot of discussion between the social worker and I but I brought up the option of Shared Lives as I had heard about the support it offered to adults with additional needs.  Me being who I am, I was a little reluctant to become a part of the scheme as “I don’t need help” how wrong I was. In hindsight, I can truly say I didn’t realise how much help I needed until I’d had it.

On the 23rd of January 2013 I met Josephine, I can remember like it was yesterday, I was sat in my hospital bed trying to concentrate on what was being asked but all I could think was how this woman with the kindest smile and it seemed even kinder heart had made me feel the most human I’d felt in a long time. I was so distracted by this, I agreed to not liking cucumber… 4 years later and both Josephine and Paul, Josephine’s husband,  still believe I don’t like cucumber, when really I do.

Anyway on the 24th,  I moved into the place I was only supposed to be staying “a few weeks.” A couple of months past and I’d found myself fitting in with Josephine and Paul’s lifestyle, even joining Blackpool Bears with the help of Josephine, but this wasn’t my greatest achievement. My greatest achievement in that first few months was the smallest of all things… getting on a bus. By myself. It sounds ridiculous, a what was 20 year old that had never been on a bus on her own before, but it was true. My mental health state was the biggest issue, my anxiety stopped me from doing almost everything, making me fear I was going to get something wrong, get lost or worst die. So that day when Josephine told me she was going to drop me off at my appointment and I would have to make my way back by bus myself I feared everything. Literally dreading the end of my appointment even though she had told me the exact route to use. To cut a long story short, I did it. I got on the bus and I got off at the right stop. Although it was a very small thing, I felt like I had achieved a lot. Yes the whole plan seems a little unorthodox to some people but Josephine knew that was the kind of approach that I needed and what a fantastic approach that was. I now spend half of my time on and off buses, and the other half it seems waiting for them….

Anyway that wasn’t the only breakthrough I’d had in the few months after I’d moved in Continue reading

Future social work

The Think Local, Act Personal partnership has published a paper which I helped to author: Developing a Wellbeing and Strengths-based Approach to Social Work . Here is my foreword to the paper which looks at how social work could change to deliver the Care Act’s vision for wellbeing, drawing on Asset Based Community Development thinking and similar ideas:

Talk to social workers of a certain vintage about community development and many will begin to recall fondly the days of ‘community social work’, when social workers were expected to think whole-community in their approach to supporting people and perhaps even had the time and freedom to do so. Since that period, pressures upon social workers have increased with rising demand and falling budgets. The professionalisation of social work took the sector away from community social work, which was sometimes seen as hazily defined and weak on evidence of outcomes. It would be foolish to believe there was a ‘golden age’ and this paper is not a call to return to the past. Despite increasing pressures, social care can claim to have reformed itself more radically than any other public service sector. The concept of ‘personalisation’ is still contested and imperfectly implemented, but it is unarguable that thousands of disabled and older people have a level of choice and control which was unheard of until recently. Half a million people have personal budgets and a fifth of those have taken their personal budget as a cash Direct Payment, enabling them to create and manage an entirely new workforce of Personal Assistants. There are hundreds of innovative small and microscale enterprises, helping people to live well through interventions which look nothing like traditional services. Community-based interventions like Shared Lives are growing rapidly despite the pressures of austerity. So there is much innovation in services and support, alongside much-raised standards of skill and accountability amongst social workers, but we are also starting to understand the limitations of services acting on their own and the huge potential for support which fits around and enables people’s informal support relationships with their families and communities. That change does not make social work any less important, but it will require a new (or rediscovered) set of social work skills and attitudes: a social care workforce with the humility to use its power and access to resources not to take charge, but to enable people and families to take charge. It will need to be a workforce confident in its expertise but also more confident in the expertise and potential of individuals, families and communities. Models like Local Area Coordination and community navigators create the space in which professionals can get to know individuals and families well enough to understand what their goals and capabilities are, as well as their needs. Making those deeper relationships the norm will be a huge challenge in a financially stressed social care system, but meeting that challenge is the only way to a sustainable system, good lives for people with long term conditions and a workforce which is the best it can be.

Full paper here: bit.ly/1TTo3P3

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 Continue reading

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 Continue reading

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 Continue reading

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: Continue reading

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.