Care Minister meets Shared Lives households

Helen Whately, Minister of Sate for Social Care, met new and long-term Shared Lives carers during Shared Lives Week this week, as well as the social care staff who approved record number of carers under the pressure of the pandemic, using adapted assessment processes.

My colleague Phoebe Barber-Rowell, who leads our communications, writes:

The carers included some of the 200 just recently recruited by a successful DHSC-backed campaign using the Covid emergency fund. The carers described to the minister Shared Lives supports 15000 people across the country,  accounting for just 1% of social care provision overall – and yet it is consistently, officially ranked by both the CQC and the people who use it as the safest, highest quality form of social care there is.

In a reverse of typical care services, the new roles, created by Shared Lives Plus, are the ‘ultimate post-pandemic job opportunity’ and point towards the much-discussed topic of the future of social care, as they see carers provide personalised Shared Lives support in the carer’s home – on either a long-term, respite or day-support basis.

Emily and Allen Portwood are Shared Lives carers based in Warrington and have opened up their home to two young adults, Molly and Tyler.  Emily said: “To us, this isn’t a job, it’s about providing a home, security and happiness within our family for those who need it.

“We got into it because Allen, who is a former policeman and has his own MOT garage, was really inspired to help young adults. We looked at all the options and Shared Lives was the perfect choice – there are no unsociable hours away from our family and we can just include them in our lives. We have a big family already – it’s just got a little bigger!”

The jobs follow a £300,000 funding boost from the government’s Coronavirus Community Support Fund, distributed by the National Lottery Community Fund, aimed at rapid recruitment of Shared Lives carers across the UK. Helen Whately, Minister of State for Social Care, said: “The pandemic has shown us the increased need for social care which offers more freedom, independence and choices and enables people to strengthen relationships which are so vital to our mental and physical health.

“I’m delighted that Shared Lives Plus, under the extraordinary pressure of the pandemic, with the support of government’s Covid Emergency Fund, has ambitiously transformed the way local authority and independent Shared Lives schemes recruit and assess potential carers supported by online technology, to provide innovative Shared Lives support in their own home. Shared Lives services, funded by our Covid Emergency Fund have exceeded their ambitious recruitment targets. A huge thank you to everyone involved and for all you do. I’m delighted to welcome 200 new Shared Lives carers, over the last six months, into the social care workforce, with over 100 people moving in with their new Shared Lives carer and benefiting from the safest and best quality form of social care available. The opportunity now that I really want to support, is to scale it up so that even more people can be part of Shared Lives households.”

Laura, who lives with her Shared Lives carer, asked the Minister a question. Here’s Laura’s question and Helen’s answer:

Care minister Helen Whateley MP meets Shared Lives households – Shared Lives Plus

How did we do today?

I’m extremely grateful to Rachel Hughes, Lecturer in Social Work, Goldsmiths, University of London, and Tim Fisher (@familygroupmeet) social worker and expert on Family Group Conferencing and Restorative Practice, who offered me this guest blog which starts with public services asking for feedback they don’t really want, and explores how social workers and citizens can have meaningful conversations at a time when the ‘social contract’ between people and services can feel at breaking point. I met Tim when Shared Lives people were involved in one of Camden’s ground breaking seminars in which citizens, practitioners and leaders explore different ways of working together – a video link is in the text below to give you an idea of how unusual and inspirational Camden’s approach to coproduction is!

Rachel and Tim write:

It started with a discussion – or a mutual moan – about feedback in public services.  How it revolves around forms and data categories.  How it never tells anyone anything.  How tiresome it is to produce – for all involved.  And yet. . . on rare occasions, a conversation between a public servant and someone who uses a service manages to change things. What creates that opportunity for real clarity and change?

As with many problems in contemporary public services, the answer lies upstream.  Asking for feedback is a process intended to ’empower service users’ and ‘enable’ them to influence the way services are delivered in future.  Yet it does not in any way challenge pre-existing power relations, since it is a process directed and controlled by services themselves. So compliments tend to be gratefully accepted and pinned to the virtual or actual service noticeboard until they fall off, while any critical feedback is liable to be treated as ‘complaint’ and fended off with all the resources services have at their disposal. Either way, this feedback is rarely seen as a resource for transforming services.

The key to escaping the feedback bind, we think, is to conceive of the activity upon which feedback is being given is as a shared enterprise (or shared endeavour, in the words of the new Chief Social Workers for Adults).  If this happens from the outset, then, when the activity comes to an end, shared reflection is possible.  What do we mean by shared reflection?  We mean a relational dialogue in which each party takes as its starting point the questions:  who is this other person? And what are they teaching me?  In contemporary social work, there is a focus on ‘strengths-based working’.  What we are talking about might be thought of as a dynamic extension of the strengths-based perspective.  Not a fixed professional assessment of someone’s capacities but rather an alive appreciation of mutual learning, a belief that people can surprise, constructively challenge and teach us things.  A parent activist, Kevin Makwikila, with experience of the child protection system in Camden, often uses this quote from community theorist Peter Block in presentations to express what we are trying to articulate here:

“If you are working to make the world a better place, there are few experiences more rewarding and useful than having your thinking turned upside down. A shift in thinking is the essence of transformation. It is the basis of renewed faith.”

As things stand currently in UK social work, there are a number of barriers to conceiving of social work practice as shared enterprise.  In particular, there is a breakdown of the social contract, and there is the symbolic and actual distancing of social workers from citizens who might need their services.  Previously, citizens accepted (or felt obliged to accept) some measure of intrusion in family life (by schools, health services, social services) in return for the State’s commitment to protect and care for them or their dependents should they, for whatever reason, be unable to do so themselves.  But, as a consequence of the policy of austerity, this contract no longer holds (a point made and evidenced in compelling fashion in Featherstone et al’s 2018 book Protecting Children:  A Social Model)In adult social work, we can see people with no continence issues – entirely legally – offered incontinence pads instead of toileting assistance.  Restrictions upon people’s dignity or liberty are authorised because there is no better alternative available.  Meanwhile local authorities’ pleas for additional resources to enable them to fulfil their duties in law go unheard by central Government.

It is not only austerity which erodes the social contract, however, but also the distancing of social workers from citizens, which is both actual, and symbolic.  The ethicist Gert Schout writes of

“hyper-professionalism” – a “positioning of professionals as the exclusive or primary agents of change and their privileging of certain tools and interventions of their choosing, which erodes the social contract, increases stigma in communities about statutory social work and decreases community strength.”  

Similarly, the social entrepreneur and author Hilary Cottam talks about a system of protocols which has slowly accreted around care professionals: “there is a premium on being dispassionate, on keeping our distance.”  That distance manifests in a very real way in the gated and guarded office buildings where many social workers now work.  Gone are the locality offices tucked away within family centres and adult day services.  The new buildings are state-of-the-art, more efficient to run, better insulated – in every way.  But what price that insulation?

For us, the collapse of the social contract and the distancing of social work risks making practice which is ineffectual and, at worst, inflicting relational trauma on already traumatised families and adults.  If we are to achieve the sense of a shared endeavour upon which shared reflection is possible, we need to abandon the rigid separation of public and private spheres which currently blights social work and make space for reciprocity and mutuality.  We must redraw the lines within the everyday of our practice and our relationships  learning from people who have their own insights into using support, like James (speaking here).

This radical reshaping is already underway in a number of places. In Camden, its citizen-led Family Advisory Board is now in its 6th year. Camden Conversations  – a family-led child protection inquiry – born out of a partnership with academic Professor Anna Gupta and ‘Annie’ from Surviving Safeguarding – is a developing case study in the power of parents to change how social workers conceive of their practice. And Camden Adult Social Care, under the What Matters transformation, are developing a new Shared Lives offer, a big increase in Family Group Conferencing for adults and Full Circle community meetings where people help people to problem solve together.  Camden is recognising that we need to move to connect. There are thousands of crossroads where we work – places where we could pass each other by – or form new connections.

In Barking and Dagenham, the New Town Culture project – a partnership between the London Borough of Barking and Dagenham, the Serpentine, and Goldsmiths, University of London – is bringing artists into social care spaces, and social workers and social work service users into artistic spaces. Unaccompanied asylum-seeking children are finding their voice in encounters with Franz West at the Tate. Former Ford Dagenham employees and their social workers are meeting leading artists including a Turner Prize candidate to plan and undertake projects which allow mutual interests to emerge in exciting, surprising and sometimes messy ways. Because, as Alex Fox has pointed out and as the Shared Lives project demonstrates:

“For real change to take hold, you need to involve people who don’t always agree with each other and you need a tolerance for messiness: the neater the plan, the more fictional it is…ultimately, we may need to replace our existing power structures with decision making that feels more like those movements: collaborative, decentralised and human.”

We’re off to reflect on our shared enterprise.  Unsolicited feedback welcome!

A different relationship between people and services

Tim Fisher of Camden council hosted an inspirational day thinking about how to build different kinds of connections between people who need and offer support, at which I and colleagues, including our new peer Champions and people with lived experience of using Shared Lives were privileged to speak. Tim’s colleague, Martin Hampton, was kind enough to review my book for the Camden council social care newsletter. Martin writes:

Tim Fisher, Family Group Conference Service Manager, recently placed an insightful book on my desk entitled ‘A New Health and Care System – Escaping the Invisible Asylum’ by Alex Fox. It is no surprise to me that Tim recognised that Fox’s book is sympathetic to the principles of support and care within family group conferences, where relationships are central, nurtured and strengthened. Fox is cited in the 2019 Department of Health and Social Care ‘Strengths-based approach: Practice Framework and Practice Handbook’ and his book is a subtle and powerful addition to strengths based practice. The value of our public service resides in the people that use and provide the service, particularly the relationship between them and the health and wellbeing they create together.

In Fox’s radical book, he states that connecting people should be a mainstream goal of our public services as it is linked to heath, wellbeing and happiness, with isolation a serious health risk. Fox draws on evidence that loneliness leads to poor physical and mental-health and increases the risk of mortality (Holt-Lunstedet, 2010). He also cites evidence that nearly half of people over 85 admit to experiencing loneliness most of the time and highlights research showing that one in ten people visit their GP because they are lonely. He reminds us that loneliness in old age is not just miserable: loneliness is associated with risk. Particularly risk of falls, poor physical and mental health and higher risk of dying prematurely; all of which create further cost in the acute part of the system, and suck in an ever-increasing share of the available resources. Yet Fox evidences a UK Homecare Association Survey (2012) which found that 73% of home-care visits in England were shorter than the allotted time, many visits of 15 minutes (barely time to help a frail older person get up, washed, dressed, and fed). A Health Watch England 2017 Enquiry into Homecare found that people simply stated the obvious: ‘That care packages were designed to meet the needs of the service provider rather than the service user’ (Healthwatch, England (2017).

Fox’s book utilises London School of Economics research that found genuine preventative aspects to befriending and recognised the value of a relationship in supporting good mental-health and resilience. These interventions typically take an ‘asset-based’ approach: they help people to build their own strengths, capabilities and resilience and those of their families and friends (C Kapp, M., Bauer, A., Perkins, M. and Snell, T. (2011). Fox argues that Government should devolve responsibility and resource control to the most personal level possible, and then create ways for individuals, households and community to pool these resources and build towards a scale that works for them. Finally then, Fox leaves us with the profound idea of Shared Lives; a simple combination of ordinary people with the capacity to care and a spare hour with a local organisation ‘pool’ that can bring the right people together and monitor the results. I am sure there will be many examples of people thriving in Shared Lives projects, and it would be positive to start one in Camden. As Fox concludes, a person’s interaction with any support service is more cost-effective where both service and individual (or the family) bring their energy, time and creativity – and where they see success as a shared responsibility, not something one purely owes another. This only happens when workers and people form real relationships.

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.