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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), Chief Executive of NHS England, who said, “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” Read the introduction here and get a 30% discount code. Our latest short films:

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. Lloyds Bank Foundation,  the Big Lottery Fund, SCIE and partners are growing Homeshare in the UK.

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A Long Term Plan for our communities

Last week, I wrote about the NHS Long Term Plan, and the changes it outlines for the way that the NHS works with communities and community organisations, which have the potential to be important, if they are followed through.

There is a separate Chapter in the Plan about “Putting the NHS back onto a sustainable financial path”. The actions it outlines will no doubt be prioritised and looking at them gives a good sense of the challenge facing those of us who will be trying to keep a focus on building a more community-embedded, holistic and personalised health system. The five sustainability tests cover balancing NHS budgets, “productivity growth”, reducing “growth in demand” and “variation”, “improving providers’ financial and operational performance” and making better use of “capital investment and its existing assets”. Prevention and integration are cross-referenced, but the missing insight here for me is that even the most efficient use of the NHS’s own resources won’t deliver sustainability: we need to place equal value on using and building the resources brought by individuals (their capacity to self-care and to care for each other), communities (are they lonely or inclusive? places it’s safe to walk and cycle?), and community organisations (which could contribute so much more health care and health-creation).

Because we see efficient use of NHS resources and transforming the use of community resources as completely separate issues (one short-term, measurable and urgent; the other long-term, intangible and aspirational), we stymie both: short-term efficiency drives are insignificant next to the impact of collapsing social care and fracturing communities; cheap and cost-effective community programmes, including even flagship social prescribing programmes, can be axed in pursuit of a balanced budget.

So I would add another test to the five sustainability tests in this chapter. For real NHS sustainability, every local health system will need a clear picture of all of its local health-creation assets, on which it must base a Long Term Plan for investing in its communities.

The NHS Long Term Plan

NHS England has finally found a gap between Brexit crises in which to publish what was in danger of becoming its Long Awaited rather than Long Term Plan (LTP). While the preceding plan, the Five Year Forward View (5YFV), had the feel of a new leadership setting out its vision, the LTP unsurprisingly feels a bit more box-ticking: it followed NHS England securing £20bn in additional funding over five years from a government which then wanted to know what it was going to get for that ‘extra’ money. I put ‘extra’ in inverted commas, because the settlement only takes the level of funding back up towards more typical rates of NHS funding increase after years in which most health economists regarded the NHS as under-funded, and in which social care funding has fallen.

The 130-plus rather dense pages though, are full of specific actions, including some very positive indications of how the NHS’s thinking about communities, and community organisations, has evolved from the 5YFV. That plan set out a compelling vision for communities, but it was light on tangible actions in that area. The prose here is less lyrical, but the actions are there, and they should make a difference.

Most important are the headlines taken from the forthcoming Comprehensive Model of Personalised Care. It’s not a very snappy title and it’s a programme still under the radar for much of the NHS, but it should prove to be as big a change for long term health care as the personalisation reforms have been in social care, and it uses some of the same mechanisms. By 2024,

  • 200,000 people will have a personal health budget, meaning they, rather than doctors, can decide how they want to be supported with a long term health condition
  • 900,000 people will have access to over 1,000 social prescribing link workers. These workers will be part of local primary care networks, which will bring together GP practices with, the plan says, councils and community groups.

These are large numbers of people – and represent a different way to spend large amounts of NHS money, which could help to change local health economies. These reforms may have learned from the personalisation of social care, where personal budgets were found to be more effective ways to change things for groups most able to advocate for themselves: the social prescribing link workers should help a wider range of people to make informed choices. We’re expecting a lot more detail on personalised care next week.

In the Joint VCSE Review, we argued that VCSE organisations need to be at the heart of both planning and delivering health and social care. We said that this was essential if care was ever to be redesigned around people’s lives, getting people out of hospital, and keeping people out of care homes for as long as possible. In particular, co-designing services with communities and community organisations is the only way to reduce the inequalities which people from black and minority ethnic communities, and other marginalised groups, encounter when they try to use health services which are still designed by commissioning teams in which white men remain over-represented. (See our concise action plan).

The Long Term Plan says Continue reading

Getting on with it

A few weeks ago we took part in an event called Social Care Future, organised by a group of activists who had decided that rather than asking as they did every year for more people with lived experience to be at the ‘official’ social care conference, they would put on their own. With virtually no budget, over 12 months of planning it went from some tweets to a two-day, two-venue event for hundreds of people. The final session took people with lived experience into the official conference for a standing-room-only session to share ideas between the ‘fringe’ and the mainstream.

I have a personal reason for remembering this event fondly: it started with an inclusive theatre group, MixIt performing a musical based on my book. That’s is not a sentence I ever imagined writing! In it, people who use services imagined a social care future in which they had ‘escaped the invisible asylum’, are in charge and living the lives they wanted with people they chose. Just as happens in Shared Lives now.

But I think the event felt significant for everyone who took part. We are still in the minority of organisations who often attend events with our Ambassadors and others who share their life. In the health, social care and charity worlds, we still think our job is to challenge those in power to do things differently, rather than to do what the organisers of Social Care Future did. They organised the event they wanted, and then invited people with power to meet them on their own terms.

With politicians fighting amongst themselves and continuing delays to the social care Green Paper, and the NHS Long Term Plan, I think this is a wider lesson for our sector.

Fed up of waiting for the ‘official’ Green Paper, the Local Government Association published its own – with Shared Lives highlighted as the future. Our members constantly demonstrate the power of ‘let’s just get on with it’.

I have so often heard people with learning disabilities or other support needs frustrated that they can’t do something they want to do, because it has been so hard to get all the right people’s permissions. Shared Lives is designed to get the right people involved and give them as much freedom as possible to get on with life. We will never invent a service which solves loneliness, but hundreds of older people are now choosing to share their homes with younger people through Homeshare (which often helps with younger person’s loneliness as much as the older person’s). With this BBC film being viewed 25 million times, the appetite for bringing people together with shared living has never been stronger.

But this year has not always been easy for us. Continue reading

Niche

The NHS will publish its 10 year Long Term Plan soon. There can rarely have been such pressure on a planning process: the NHS has been offered more money than it currently receives at a time when government is still reducing public spending. By 2023, the NHS will receive £20bn more a year than it does now, although this could be offset by reductions elsewhere, such as in the social care or Public Health budgets.

Big strategic planning processes usually follow a pattern. The more high profile and high pressure they are, the more they tend to be carried out at speed, by a small group of very clever people operating in relative secrecy. This was how many areas produced their Strategic Transformation Plans (STPs) which were the planning process local NHS management systems were immersed in for a while last year. It was why some of those plans weren’t as transformative as they needed to be.

Hundreds of groups have fed their views into the Long Term Plan over a short period. I have been feeding in the messages from the Joint VCSE Review which I chair, and which gathered views on its Action Plan earlier this year. I’ve been arguing that the Long Term Plan needs to set out a long-term investment in our communities, not just our health services. Now all of those messages are in the hands of a small group somewhere in Skipton House, who have to whittle them down to a manageable report, which will be expected to cover the big areas of political concern: cancer, mental health, waiting times and so on.

It’s easy to see how some kinds of message tend to survive this high-pressure, high-speed approach to big plans and some don’t. In Continue reading

Fly

Young people with support needs face a ‘cliff edge’ at 18 when children’s services can disappear and adults’ services don’t always step up. Children’s services have often provided continuity for disabled children and their families, who can build up good relationships with professionals: the move to adults’ services can feel like starting again with a whole new rule book – and often much less public money to draw on. It’s heartbreaking to see people sinking for lack of good support, just when their lives should be taking off.

Few of us magically become independent at 18, so it’s a mystery why we expect young disabled people to reach that cliff edge and fly.

For most of us, building independence goes most smoothly when we have solid foundations: lasting relationships with people who love us. This new film from the Social Care Institute for Excellence shows how Shared Lives carers Lindsay and Mark are helping Kurtis to build on his many strengths as he becomes an independent adult.

The Future is Close

Our public services are a sanctuary: living evidence that we do not abandon people who find themselves needing support to their fate. But every sanctuary has the potential to become prison-like. It is not always easy for those of us who have a hand in building, maintaining or defending those services to recognise the harm they can do as well as the undoubted good. We tend to want to place responsibility for that elsewhere, and in time the things we get wrong over and over become things we take for granted or refuse to see. Even when those problems repeatedly become tragedies that no one can ignore, we can act as if they are aberrations. We will learn lessons. Policies have been changed. They are ‘never events’, until next time. We can trace the exclusion and oppression of people who have a learning disability through countless reports and plans. The Winterbourne View scandal felt like a never-again moment, but it was followed by more failures and in the past few weeks the regulator CQC has been asked to carry out another review into institutional care for people with learning disabilities following more distressing cases of prison-like conditions.

Meanwhile more than a million older people no longer get the support they might have expected previously, and millions more silently suffer loneliness. Social care performance as a whole is improving, but the gap between the best and the worst widens. Some of this is about resources, but not all. Even on a shoestring, caring and motivated people can help people achieve great lives. But how do we create system which sees those good lives become the expectation, not the exception?

This is often described as a ‘culture change’, or dependent on ‘local leadership’. But culture cannot be separated from the structures – what people think they should buy, sell, measure, expect, reward and punish – within which we all work. There will always be leaders – and families and front line workers – strong enough to do the right thing in the face of pressures in the opposite direction. But we need doing the right thing to be what everyone feels safe and able to do, all the time.

Tomorrow the Social Care Future event in Manchester will bring hundreds of people together to try to show that a better way is possible. The local areas who are gathering to share what they have learned have the same pressures as other areas. They do not pretend they have everything fixed, but they are committed to the kind of whole-area change that is needed to bring what works best for people out of the margins and into the mainstream. We will be there to show how the quiet, slow and patchy growth of Shared Lives and now Homeshare demonstrates what you can grow even in an unforgiving climate. Other community-based approaches will be there too: for once, their work will be at the centre of an event, not at its margins.

Crucially, Social Care Future’s participants will be people with lived experience, not just the usual suspects. Those of us in positions of power or influence have demonstrated over years that we can’t dismantle old systems and build completely new ones, certainly not on our own. Real change comes when we are prepared to listen, and to work in support of a vision for a good life that feels real to people who use support and their families.

Social care’s present is over-stretched, under-funded and under pressure. We all need it to have a future worth fighting for.

Huge thanks to Martin Routledge, In Control and the organisers of Social Care Future for dreaming up this event and making it happen for all of us.

The system said nothing

The family said, “The system will only help you when it’s already too late.”

The social worker said, “I came into this job to help people, but our systems get in the way.”

The manager said, “We know we need to do things differently, but we have to work within the systems we have been given.”

The director said, “We’ve got an exciting new vision for empowering people, but our systems take so long to catch up.”

The Minister said, “The first thing you learn in this job is how hard it is to change the system.”

But there was no system, so the system said nothing.