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A new health and care system: escaping the invisible asylum is published by Policy Press and launched at Nesta in London with Simon Stevens (video), and at a seminar at Manchester Metropolitan University’s MetroPolis think tank on 20 March 2018 with  Jon Rouse, Liz Kendall MP & Prof Sue Baines. Simon Stevens, Chief Executive of NHS England, says, “This is a profound and timely call for a different relationship between people and the services and institutions of the welfare state. It’s a radical and necessary call to arms for a more human, personal and connected society”

Cathy Newman of Channel 4 News met a Shared Lives household: https://www.youtube.com/watch?v=wb_DyYvE9zE

This Homeshare film has been viewed over 25 million times. Lloyds Bank Foundation,  the Big Lottery Fund, SCIE and partners are growing Homeshare in the UK. Our £1.75m partnership with NHS England is developing Shared Lives as a new form of healthcare with 8 local NHS trusts. The Shared Lives Incubator social investment programme developed in partnership with Social Finance and Community Catalysts is investing in Shared Lives in three areas.

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A future for social care?

Here is my blog for Social Care Futures, the event and movement which will be based around a gathering in Manchester, alongside but independent of the annual National Children and Adults Services conference:

What do you do when the cause you are campaigning for fails to register with the public? When it is at best misunderstood or seen as one of life’s necessary evils and at worst seen as a permanent bad news generator, peppered with crises?

That’s the rather depressing problem facing campaigners for a better valued, better funded social care system. None of those public perceptions are fair. We can all quote stories of great social care, of lives being changed by sheer creativity, of inspirational compassion and, in my view, of some of the most radical transformation of any public service sector. But polls, focus groups and research agree: the public is still very hazy about what social care is, with those who do have an idea tending to believe it’s something provided free on the NHS. Social care is only guaranteed to make the news when it is being talked about as going bust, or when there has been an abuse scandal.

It was fascinating then, to be in a crowded room with the organisers and supporters of Social Care Future, the gathering planned to take place in parallel to the annual National Children and Adults Services conference in Manchester. We were hearing from The Frameworks Institute about their ground-breaking work with Joseph Rowntree Foundation (JRF) on reframing the issue of poverty and how to tackle it. The public has some well-worn and cliched ideas about poverty, including that it’s often do with people’s bad choices, including people who could work choosing not to, that there’s no such thing as ‘real’ poverty in the UK any more. Research shows that these are not true: poverty is real and can be desperate, people are born into and trapped in poverty, by low paid work and rising housing costs as much as worklessness, and so on. But messages about poverty as a problem, even a crisis, were not cutting through, even though they were based on real evidence, painstakingly gathered, because humans don’t easily change our deeply-felt beliefs through hearing facts, statistics or reasoned arguments. But reframing the issue of poverty has made a real difference to how JRF could get its research-based messages through to different audiences. The reframing process (set out here) includes appealing to people’s values, rather than relying on economic or other more abstract arguments: poverty ‘just isn’t right’ and shouldn’t be happening in a decent society. It also involved using some simple, visual images that make sense to people. In the case of poverty, JRF used ‘restricts and restraints’: poverty is rarely the result solely of bad choices: inequality and the hard end of our economy keeps hard-working people trapped in low incomes. They also used the idea of strong currents – the low wage, high housing cost economy, and life events like becoming disabled – which people cannot swim against however hard they try.

It was a compelling presentation about a successful campaign, whose messages could be found in previously indifferent or hostile papers. So what should we take from it for social care?

Firstly, that, whilst the crisis in social care is real and causing misery and suffering, if that is all the public hear about social care, it may not be motivating people and the politicians they elect to aim for change. In fact, a message that something is in permanent crisis, particularly when the public is unclear or ambivalent about it in the first place, may create a sense of hopelessness: nothing can fix it, so why throw good money after bad? That can’t be to say that stories about the crisis shouldn’t be told, but it suggests we also need a strong, consistent story about the good that social care does. We need to offer people solutions to the crisis – not just solutions to public service economic problems but also showing how social care is the solution to life events which any of us could experience ourselves or in our families.

There were two exciting and hopeful lessons from the session for me. One is that the flip side of the public not understanding and engaging with social care is that we – the social care sector – create and control a lot of the messages. We don’t have to compete with deeply, embedded or oft-repeated unhelpful messages, we just have to get our own messages right. Secondly, that we have all the elements that are needed to change people’s minds: social care is vital, is delivered by caring people and can transform lives. The vast majority would agree that supporting disabled and older people to live good lives is simply the right thing to do: we can appeal to that sense of fairness. And we have Continue reading

I’ve been on adventures and made new friends

Meg who spent five years in a mental health hospital, told an audience of MPs, Ministers and people involved in Shared Lives that we need to see people with mental ill health as “people with a future”, not as a risk or a case to be managed. Shared Lives was her route to feeling human again, “With the support of my clinician, I moved in with my Shared Lives carer in a new town. I was so scared, I didn’t know how to live in the community, but she taught me and she stood by my side. It’s been 22 months since I left hospital and I have achieved so much. I work three days a week, I run a self-harm support group in my town, I’ve been on adventures and made new friends. In January this year, I moved into my own house and my Shared Lives carer still supports me a few days a week.”

Meg’s journey from not being confident crossing a road to speaking in parliament was dramatic. Ali told us that she reads “all the inspirational stories about the amazing things that people in Shared Lives have achieved. And every time I think to myself ‘well me and Chris haven’t done anything like that’ and I feel like a bit of a fraud.” But Chris’ journey to living somewhere he could just be himself, after 19 years in residential care, is inspiring: “It was an excellent home. But there were staff. And there were residents. And there were lots of boundaries, and when Chris wanted to go for a drink in the pub he had to complete a risk assessment.”

“Well I’m not staff. I’m not even sure I am particularly a carer – I’m just me. And Chris is not a resident or a client or a service user, he’s just Chris. And we live together and learn from each other and drive each other mad and maybe, just maybe – though we’d both be far too embarrassed to admit it- we even love each other a tiny little bit.” Chris and Ali’s full speech is here. 

Meg asked us to think about all the most embarrassing things we’d ever done; the things we really regretted. And then to imagine they were all written down in a record we carried with us and had to show to every new person we met, with none of the good things we’d done included. That was what it was like to be within the system for her: never being able to grow beyond her past. Darren told us that he couldn’t remember much about his many years in nursing care: mainly just watching TV. Now he has a busy life with less medication, more exercise and activities, and most importantly, friends, in a household where he felt he fitted in.

We need services which care for people, but which think hard about all the impacts of that care, good and bad. As Ali put it, “I am learning all the time. In particular about how to tread that very fine line between ‘support’ and ‘control’ and how to just let Chris be himself.”

Our thanks to Liz Kendall MP for hosting our event, with speakers Norman Lamb MP and Kit Malthouse MP, all of whom pledged to help make sure our members are valued and celebrated as we try to bring Shared Lives to many more people.

 

The personal is political

My social media timelines are full of two very contrasting sets of stories today: the stories about people coming together, as Shared Lives organisations celebrate Shared Lives week, and images of distraught children being taken off their parents at the US border. There could hardly be a starker contrast: our capacity to unite and to divide.

People who choose to share their lives with people to whom they have no legal or family obligation are doing something both natural and radical. They are making a choice to build their whole lives around the idea of bringing people together. They send us a powerful message: one which feels more important now than ever, so we are fortunate to be able to take their messages into parliament tomorrow, for our annual parliamentary reception. It is a truly cross-party event, this year hosted by Liz Kendall MP, last year by Alistair Burt MP. Norman Lamb MP will be speaking alongside Kit Malthouse MP. We’re going on a day when politicians will once again be debating Brexit and bitter divides will be laid bare. Our stories of people supporting each other to live life to the full could be seen as light relief by the parliamentarians, but I hope they feel the power of those stories, their radicalism and how much we need people who bring people together right now.

The choices that our members make are very personal, but as feminist Carol Hanisch said in 1970, “the personal is political”. So this year, we are celebrating the personal stories of Shared Lives as usual, but also calling on politicians of all parties, locally and nationally, to value Shared Lives carers, ensuring they have the training, back-up and fair pay they need to carry on making their very personal contributions to the future of our health and care system, and to building stronger communities and a more unified society in these divided times.

Shared Lives Week is here

We’re celebrating the start of Shared Lives week, just as the Prime Minister announces a 70th birthday present for the NHS: £20 billion a year in extra funding by 2023. The NHS being 70 means that social care is 70 too: they were created at the same time, but social care’s birthday present looks likely to be continued cuts. The public – and therefore the politicians they elect – value what they can understand. We understand doctors and nurses healing or curing us, so we’re grateful for what they do.

Social care is still poorly understood and too often associated with things we don’t like the sound of, like living in a care home, or failures of care. Even within the context of social care’s low profile, Shared Lives is poorly understood. It’s much older than the NHS and social care, with roots going back hundreds of years. In the 14th Century, around the time when the first asylums were being built in the UK, in a small town called Geel in Belgium, a few people were instead opening their homes to people who needed their support. The act of sharing your home and family life is radical, even shocking in a world where we can feel we have less and less contact with each other, but it’s also deeply personal. It goes unnoticed except by the people who feel safe, settled and valued somewhere that feels like a home from home.

Much of what makes Shared Lives – and indeed Homeshare – special, is the unpaid contributions which people and families make to each other’s lives. But Shared Lives carers have to live and they are not volunteers, they are trained and paid as part of the UK’s highest-performing regulated care sector. We aren’t expecting £20 billion for Shared Lives. But we are calling for every area to value Shared Lives carers. Firstly, that means seeing and understanding what they do. We are inviting elected councillors and MPs to visit a Shared Lives household in their constituency to see for themselves what goes into making good lives when people need significant support. We have a Charter for Shared Lives and we want every area to use it as a model for their own local Charter, which sets out what local people can expect when they share their lives. And we are not ignoring money. I meet Shared Lives carers who have contributed vast amounts of their time, energy and lives to ensuring someone lives well, but who have not even been considered for a pay increase in over a decade. They do not feel valued in the way that they should, and we want every area to commit to including Shared Lives carers in their workforce development and pay reviews.

The NHS and social care are 70. Shared Lives isn’t far off 700. Isn’t it time we celebrated – and valued – those thousands of shared lives as they deserve?

Feeling settled

The Children’s Commissioner reports today that : “We estimate that the majority of looked-after children – 74% – experienced some form of change during 2016-17: a placement move, a school move or change of worker. This is equivalent to 53,500 children.” (via BBC article here) Antony Corrigan, now an adult, said of his experience of moving around as a ‘looked after’ child: “You find it difficult to make a friendship group and you become alienated….I had at least 10 placements, including two children’s homes and in terms of social workers, I lost count, but I probably had about 10 in total. I just wish there was more consistency in the care I was given. It’s so easy to get lost in the system, no-one’s pushing you or encouraging you.”

We are cautious about making comparisons between foster care and Shared Lives, despite some obvious similarities in how they are organised, because Shared Lives is not about treating adults like children, and fostering is associated in people’s minds with family breakdown, whereas Shared Lives is something that adults choose when they are looking for the mix of independence and support which most of us look for when we form a family or a household as an adult, and it is very often about two families working together.

But I was struck by the contrast between that high level of instability in children’s lives, at a time when stability is so vital, and the tendency of Shared Lives arrangements to last for years. I recently met a young woman who had had around 30 foster or children’s home placements as a child, but who was thankfully settled in her Shared Lives household as a young adult. I’ve never come across someone using Shared Lives who has had more than a handful of Shared Lives arrangements over a period of years, and I meet many who have lived in the same household for decades.

There is often an emergency, unplanned aspect to fostering, which will be one factor at play, but that cannot explain children who have been moved multiple times. I wonder how much the strong focus on matching – both parties choosing to live together – plays in the relative stability of Shared Lives, and whether there is a debate to be had about matching within fostering, where there is a greater focus on professionalisation and avoiding attachments that might not be maintained. I’d be interested to hear from people much more knowledgeable about children’s support than I am on that.

Ironically, stability in the adult support sector is not always seen as a good thing. Whilst it is recognised that someone whose support arrangements are constantly breaking down is not happy (and that those crises are very difficult and expensive to manage), being ‘too’ settled is also sometimes frowned upon by service managers. I hear regularly that people who are happily settled in a Shared Lives household are constantly being considered for moving on to ‘greater independence’, even if living by themselves is not what they are looking for at that stage of life (how many of us dream of always living alone?) Sometimes that unwanted move uproots them from the support networks they have built up and they wind up in the revolving door of failed support arrangements.

In both children’s and adults’ services, there is constant churn and movement, whether it is children being moved multiple times during an already troubled childhood, or adults getting intimate personal care from a succession of strangers on a staff rota. Whereas in ‘ordinary’ life, most of us crave some kind of attachment, mutual dependency and feeling settled. As in so many things, services could learn a great deal from ordinary family life, if only we had the humility.

‘Sarah is part of my family’

You can now watch our new film about how people with mental ill health use Shared Lives to recover:  two minute version and seven minute version. 

mental health film

Meanwhile, The Guardian shared some great Shared Lives stories in its feature on becoming a Shared Lives carer: 

One Shared Lives carer said of the woman with autism who came to live with her: “She didn’t want to leave the house and she didn’t really speak. Now she’s becoming much more independent, she walks everywhere and is always out and about.”

In Stafford, Chris Goodall was part of the Shared Lives and offenders scheme. An 18-year-old with a learning disability came to live with him after being released from youth custody, instead of going into an adult prison. “This was of course a better option for him,” Goodall says. “For the first three months, he was tagged and had an asbo and a curfew. But he stuck to it and the tag came off in due course. We got him a place at the nearby college and he received a certificate for 100% attendance in the first year.”

All health and care commissioners should demand social value

This is my blog to support the launch of the Joint VCSE Review’s new action plan. I have also written a piece for HSJ with Glen Garrod of ADASS and Rob Webster of South West Yorkshire Partnership NHS Trust.

“We welcome the new action plan from the Joint VCSE Review, which has set out an important vision in which voluntary, community and social enterprise organisations work with the NHS to co-design and co-deliver health and care services with local people. The action plan has a strong focus on greater use of Social Value Act powers by health and care commissioners which enables commissioners to seek added social value from local providers and more value for public money in partnership with charits and community groups. Use of the Act should be more routine in health commissioning.”

Simon Stevens, CEO, NHS England.

What do voluntary, community and social enterprise (VCSE) organisations want from government and the NHS? Ask our statutory partners and many will say, “money” and then add “but we don’t have any!” The first part of that is true, of course. The VCSE sector can often manage with less money than other kinds of organisation, because it is often better at drawing on different kinds of resources as well: people’s freely given time, support from local community and businesses, use of community resources. But all organisations working in health and social care, whether statutory, private or not for profit, need money to run. The difference between statutory and voluntary organisations is not their need for money, it is that typically statutory organisations control that money, and VCSE organisations do not.

Two years ago the Joint VCSE Review held a full consultation with the VCSE sector and its partners, and produced a report and 28 recommendations based on what we found. We heard that VCSE did not want to be in the position of asking for money: they wanted to share responsibility for the resources available, and to help people who use public services to share that responsibility. When statutory organisations and commissioners say ‘there’s no money!’ they have often started with the assumption that they must keep spending the money they have on what they already do. Local people, particularly from groups and communities who are not well-served by current services, can take a different view, if they have the opportunity to take part in genuine decision-making (as opposed to being ‘engaged’ and ‘consulted’ by decision-makers reluctant to give up any real power). So our key message was that, if we are serious about community-based, community-owned health and care services, which both expect and ask more of citizens, we need to get serious about co-designing those services with the people who make most use of them. VCSE organisations are the only ones with any track record of doing that. The fact that co-design and coproduction are still seen as slow, difficult and optional, rather than essential to improvement and tackling inequalities, is a good indicator of how much current commissioning teams need their voluntary counterparts and the communities they reach.

King’s Fund research commissioned in response to the Joint Review found a clear distinction between commissioners who co-commission and those who see their VCSE partners as there to provide the services designed without their input. So our new action plan’s three actions include co-design becoming a core expectation, with commissioners recognising that some of their scarce resources could usefully be invested in user-led and grassroots groups which are their only viable routes to the people with whom they need to co-design the future. As areas start to co-design in that way, as pioneers like Greater Manchester are already doing, they are hearing a clear demand for health and social care services which help people to live well and to remain independent and resilient in the face of long term health conditions, so our other two actions are to embed wellbeing as a shared goal for health and care services, and to enable local leaders to commission, demand and pay for wellbeing and resilience. We heard from the sector about the need for tools to be freely available to small local organisations, not just to large organisations with research and evaluation budgets. And we were excited by the promising examples of social prescribing and other approaches which, when done well, enable commissioners to work with intermediary local bodies to get their resources effectively to the full range of VCSE organisations. We argued in our original report that fund should always be on a ‘simplest by default’ basis, avoiding expensive, time-consuming and overly bureaucratic processes which are often evidence of a lack of understanding of what the VCSE can bring, rather than reflections of any real regulatory imperative.

Our action plan, which has been adopted by the Health and Wellbeing Alliance, is an attempt to bridge the statutory and voluntary worlds. That bridge will enable people to travel more freely between their lives at home in the community and the world of service support which can too often be inaccessible. One tangible way to bridge between the values of the VCSE sector and what the statutory sector will place a value on, would be to use routinely the existing Social Value Act powers, which allow commissioners to demand social value such as use of volunteers, or employment of people with lived experience, from all of their contracts. Jon Rouse says, “The Greater Manchester Health and Social Care Partnership based our working relationship with the voluntary, community and social enterprise (VCSE) sector on the recommendations from the Joint VCSE Review, which included that statutory and voluntary agencies should work together with local people to co-design better health and care services. We welcome the new VCSE action plan and expect to lead the way in using the Social Value Act powers routinely in our health and care contracting, to get the best value possible from public funds.”

Bridging between those two worlds means building from both sides, so I want to end with a challenge to my own sector. It’s not enough for us to talk about our community roots: we need to demonstrate that they are still strong and healthy. If we are to share in the power that goes with co-owning health and care systems and their resources, we must also be willing to share responsibility. The inequality of our current public services, and their outcomes, was the strongest message we heard during our consultation. As voluntary, community and social enterprise organisations we need to look hard at our practices and the way we make decisions ourselves, to be sure that we are part of the solution to that injustice.