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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”

Florence is 95 and Alexandra is 27. Their Homeshare story has been watched 25 million times. People are using Shared Lives to recover from mental illness in the community: two minute version and seven minute version  of our new film.

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 is investing in Shared Lives in three areas.

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I never dreamt of being so independent again

Tired of waiting for the government to publish its much-delayed Green Paper, the Local Government Association has published its own. The Lives We Want to Lead launches a public consultation on the funding question which can seem like the politicians’ only focus, but also asks what social care in the future should actually offer and deliver. The LGA say they seek “to start a much-needed debate about how to shift the overall emphasis of our care and health system so that it focuses far more on preventative, community-based personalised care, which helps maximise people’s health, wellbeing and independence and alleviates pressure on the NHS.”

The paper includes this story illustrating how Shared Lives can take a situation deemed ‘complex’ or ‘challenging’ and make it simple, helping someone get out of hospital and back to the community: “I was living with my partner, running a B&B when I had a serious stroke and later two minor heart attacks. After four months in hospital, I was depressed, frail and my memory and cognition had deteriorated. We knew I needed more support with daily living than my partner could provide. I was unable to return home and it made me frightened about my future, with clinicians uncertain about my further recovery. I wanted to live locally, so I could continue seeing my partner and I missed my dogs.

“The Shared Lives scheme matched me, with two trained and approved Shared Lives carers who shared my sarcastic sense of humour, had dogs, and lived close by. They helped me through it all. When I arrived at their home, I never dreamt of being so independent again. I couldn’t walk down the drive. Now I can nip up to town. My Shared Lives carers helped me gain strength and confidence, walking a little bit further each time, until I could walk independently again. They helped me adapt to my memory loss with strategies for managing money and banking, and supported me to make meals and manage my diet.

“Since then I have booked a holiday and travelled on my own. I am very optimistic about life and planning a move into my own flat. Without the Shared Lives scheme I would have undoubtedly spent longer in hospital, had less choice about where I lived, and had a slower recovery. It is so important that money is available to ensure that schemes like this exist.”

The paper draws on data from our My Shared Life outcomes measuring tool which found that:

  • 92 per cent of people felt that their Shared Lives carer’s support improved their social life.
  • 81 per cent of people felt that their Shared Lives carer’s support made it easier for them to have friends.
  • 73 per cent of people felt involved with their community and 93 per cent felt their Shared Lives carer’s support helped them feel more involved.
  • 84 per cent of people felt their Shared Lives carer’s support improved their physical health and 88 per cent their emotional health.

I was asked to comment as Chief Executive of Shared Lives Plus and independent chair of the Joint VCSE Review, and said “Local government and the voluntary, community and social enterprise [VCSE] sector share a vision for social care which helps us all to live good lives in our own homes with the people we love. Immediate investment is needed to stabilise social care. Then councils and the VCSE sector must work with people who need support and their community organisations to codesign a social care system which intervenes early, sees the whole person and can stay with people and families for the long haul. Human, effective and sustainable
approaches already exist: great councils have been pioneering their development. Now they must be scaled up and become the norm.”

 

Imagine having another 8 minutes of social interaction a day

CMM reports that “Just ten minutes of social interaction a day improves wellbeing in dementia care”, according to a study by researchers at University of Exeter Medical School, King’s College London and the Social Care Institute for Excellence (SCIE). “The Wellbeing and Health for people with Dementia (WHELD) programme trained care home staff to increase social interaction from two minutes a day to ten, combined with a programme of personalised care. It involves simple measures such as talking to residents about their interests and involving them in decisions around their care.”

This is important work by the universities and SCIE, but how heartbreaking that a study is required to prove the need to people with dementia to have just ten minutes a day of social interaction, and that previously they could expect just two. What would the wellbeing and health of people with dementia be like if they received an hour a day of social interaction? What would any our wellbeing be like if we could look forward to just ten?

This is why we need socially-based models of support like Shared Lives and Homeshare, and why people consistently report that they are happier and healthier within them. We need as much investment in researching the groundbreaking impacts of these smaller, social models, as we have currently into tweaking existing models which can seem to offer people so little.

The caring professions

The NHS was designed in the 1940s for brief encounters: healing us or fixing us up. We often experience it doing that astonishingly well. But now 15 million of us live with long-term conditions; three million with multiple long-term conditions, which cannot be healed or fixed. People want just enough easily-reached support to live well, and to become a patient as infrequently as possible, but instead many develop long term, increasing reliance on intensive support services which not only feels miserable, it is bankrupting our service economies. We have developed the treatments and services which people need, but we have not yet developed ways of offering them which get the best out of anyone involved.

Public service leaders behave as if their main challenge is to build the right kinds of systems and organisations. It’s not: the challenge for them and in fact, for all of us who use or will use our health and support services, is to build the right relationships between people who need support and people who offer it.

I’ve often heard people who work in the mental health system talking about the need to keep someone out of the mental health system. Those professionals, who are themselves skilled and caring, and generally believe their immediate colleagues are too, see the system that they are all part of as toxic and dehumanising. How do groups of skilled and caring people become dangerous bureaucracies?

Many people now use personal budgets to opt out of those bureaucracies and set their own rules to frame the support relationships in their lives. But that does not work for everyone. Shared Lives demonstrates you can develop a national, regulated framework in which thousands of people can develop very individual, and therefore very human relationships. That can happen consistently, safely and at lower cost. Radically devolved models like Buurtzorg and Community Catalysts’ networks of micro-enterprises do the same.

We can I believe scale down our big public service bureaucracies to behave in more human ways. That doesn’t mean reaching fewer people, it would in fact mean more money going to the front line and less to big management structures, or obscure corporate entities. The ownership model we need for public services which build fully human support relationships is the locally-owned co-operative, not the multi-national. Achieving this would not only enable many more people to live well with the long term and lifelong conditions which are the NHS’ most intractable challenge, it would free people who joined the ‘caring’ professions but find themselves in uncaring organisations.

This blog draws on ideas in my book, A new health and care system: escaping the invisible asylum available from Policy Press and in a Kindle Edition.

Social care at 70 is rediscovering its community roots

Here’s a blog I wrote for the Sustainable Health and Care Campaign with Rob Webster (CEO of South West Yorkshire Partnership NHS Foundation Trust and CEO Lead for West Yorkshire and Harrogate Health Care Partnership) and Glen Garrod (Executive Director of Adult Care and Community Wellbeing at Lincolnshire County Council and the President of the Association of Directors of Adult Social Services (ADASS))

We know that health inequalities persist across the country and stubbornly refuse to improve. Local NHS plans need to embrace the root causes of inequality – poverty, housing, education, employment, loneliness, and the environment all affect people’s health and the sustainability of communities. The results are most visible for NHS colleagues in a district or community psychiatric nurse’s caseload, the A&E and the GP surgery. Supporting people with comorbidity of social, mental and physical health needs should be the driver of the future health and care system. This will also mean creating the conditions for communities and community activists to be embraced in the solutions to bring greater control to people’s lives. This is central to making progress on health inequalities, not least because people in communities which experience health inequalities see them far more vividly than any outside expert can and community activists are often the most passionate about tackling them.

There is substantial and long standing evidence that a person’s life choices, where they live, and family support are critical to keeping them well. That link between place and wellbeing was at one time a key idea within social care. When Glen Garrod, now ADASS President, was a Community Service Volunteer in the early 1980s in Manchester, working at a youth centre and with local charities, he witnessed both the infamous Moss Side riots and how members of a tight-knit community would often help each other. Formal volunteering and informal ‘helping each other out’ were both powerful forces for good.

Approaches developed within the voluntary, community and social enterprise (VCSE) sector are increasingly recognised as a key bridge between the worlds of community, health and council services. In Shared Lives, people who need significant support are matched with a carefully recruited and trained Shared Lives carer. When a good match is found, the person moves in with their chosen Shared Lives carer, or visits them regularly for short breaks or day support. Shared Lives feels unique and personal to each household involved, but is also part of a CQC regulated national care sector. It was traditionally provided or commissioned by councils as a social care service for people with a disability and the elderly, but it is now being developed by NHS England and a growing band of clinical commissioning groups as a health service, helping people with mental ill health leave or stay out of hospital, for instance. People benefit from drawing on the informal support of a household and community, the regulated care provided under the auspices of a council or NHS contract, and a national VCSE network.

Imaginative areas are redefining the roles or services, of VCSE organisations and of civil society, in order to draw on all the resources available to them. For instance, it’s National Volunteers Week [at the time of writing this blog], yet many people who are actively involved in their communities would not consider themselves volunteers and social capital can be found in unlikely places. Athens, Greece has a daunting unemployment rate and over 2,000 derelict buildings in a country which has become synonymous with ‘austerity’. But it’s also where one man invented a new  [read more]

Carry on doing the right thing

There have been another two ‘gig economy’ court cases. In the latest, Hermes was found to be employing delivery drivers it had tried to class as self-employed . Each time there is a case of this kind I get enquiries about the implications for Shared Lives, as Shared Lives carers are self-employed. On one level, there are no implications, because every court case so far has found companies not giving workers the rights, choices and autonomy of genuine self-employment, whereas the extensive legal advice we have taken has consistently found that, done properly, Shared Lives roles are self-employed, partly because people choose who to work with, and work from home with a high level of autonomy, rather than in tightly-prescribed or micro-managed roles.

Each of these court cases though, does reinforce the importance of following the national guidance on Shared Lives. Shared Lives organisations can’t have it both ways, as one or two have tried in the past: wanting all the value of what Shared Lives carers and their families bring, including the unpaid contributions people will make to someone’s life if they see them not as a ‘client’ or ‘customer’ but ‘one of the family’, but also wanting to manage Shared Lives carers more tightly than the role – and the law – allows. There is a reason Shared Lives carers are recruited so carefully over three to six months and then helped to find mutually compatible matches: it’s to ensure that the local organisation has a high degree of trust in them, knowing they have the right motivations to do the best for the person living or staying with them, not just ‘working to the contract’.

I wrote about this last year and came to the conclusion that whilst the law is complex (and each organisation must take its own expert advice), the best way to approach staying on the right side of employment regulations in Shared Lives is to keep things simple: recruit the right people then trust them and treat them fairly, in other words, do the right thing.

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