Latest news

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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Rainbow

I’m so excited to see the ‘rainbow’ of community approaches launched on the Think Local Act Personal website. Social care is often talked about as being at the heart of the perfect storm, so I love the fact that our colleagues at Nesta came up with a rainbow to give this snapshot of some of the many inspiring asset-based approaches which are transforming people’s ideas about care, support, inclusion and community development. It shows that these community models stretch across the public service system from prevention and whole-community work, so work at the acute or crisis end. The online directory which sits behind it aims to include scores more models to help commissioners and others find their way through this new world.

Here’s my blog marking its launch:

How do you make big changes to how people are supported, when the kinds of support which work best are nearly always those which feel small and personal? TLAP’s new resource – examples of innovative models of community-centred support – aims to show how to do things differently.

James lived in an epilepsy centre for twenty years, where his medical and support needs were labelled ‘complex’. But his goals were simple: friends and a job. He was able to pursue them in the small, homely setting of Andy’s household, when Andy became James’ Shared Lives carer. James moved in and lived as part of a busy household, before moving around the corner into his own place, with close ties to the household when he needs them.

St Joseph’s hospice noticed that there was a gap in the support for families, which was not easily filled by traditional volunteering. When someone approaches the end of life, it can be an isolating experience for a family. Some friends and neighbours withdraw, or worry about ‘intruding’. Agnes said, “I have friends but no-one turns up to see me, why? I needed to go back to the hospital because … if I was in hospital then people would come to visit me.” Agnes was matched with Lucia through the Compassionate Neighbours programme, which enables people to take on a more personal, open-ended role. Lucia says now she and Agnes are “more like family”.

The changes which Shared Lives carers, or Compassionate Neighbours, achieve in people’s lives are huge for the individual, impacting on their whole life. The challenge for ‘asset-based’ models like these is reaching more people, attracting investment and referrals in public service systems that are designed to make much more specific interventions across very large populations. Large parts of the NHS, for instance, are organised around treating a particular medical condition across populations of hundreds of thousands of people. The senior leaders who control vast council and NHS budgets are expected to be strategic, avoiding getting ‘bogged down’ in detail and taking a ‘helicopter view’. From a helicopter, people’s lives can look very small and insignificant.

Read on here

The future of health and social care – conclusions from the Joint VCSE Review

I have come to the end of my role as independent chair of The Joint VCSE Review which took hundreds of views from voluntary, community and social enterprise (VCSE) organisations and developed actions, co-owned by government and sector, for how statutory and voluntary organisations should work together with citizens to redesign a more community-based health and care system, and then deliver that model. At national level, we helped design the Health and Wellbeing Alliance and the Health and Wellbeing Fund. NCVO provided the secretariat and a huge amount of support and expertise to the review, along with too many colleagues from the VCSE sector and from the Dept for Health and Social Care, NHS England and Public Health England to list here – I’m very grateful to them all.

My conclusions and recommendations for future joint policy work between government and the VCSE sector are here, and I am looking forward to discussing them with Simon Stevens of NHS England, Duncan Selbie of PHE, and Caroline Dinenage, the Minister of State for Care, shortly. NCVO have kindly published my blog on it here, which begins:

What does the health and social care system want from charities and social enterprises? The answers to this vary, and sometimes contradict each other. Voluntary, community and social enterprise (VCSE) organisations are asked to be more efficient and to merge into bigger organisations which can be contracted with, but they are also challenged to remain rooted in their communities and to tailor their work with specific communities. They should be collaborating not competing, while grant funding continues to be replaced with competitive contracting. The public expect charities to be independent, strong voices challenging the NHS and councils when they let people down. Those bodies generally welcome constructive criticism – up to a point.

When the world’s expectations of us become impossibly complex, the question we should ask becomes simple: what are we for?

Read the rest here.

Where human rights begin

One of my favourite quotes is Eleanor Roosevelt’s comment about where human rights begin: “in small places, close to home”. It would easy to hear the humility in that, and miss the ambition carried by that humility: our rights to be human, not as an abstract principle to be debated by philosophers or politicians, but to be lived, by all of us, all of the time. When we go home, all of us live in those small places.

Roosevelt’s quote reminds me why institutions are so incompatible with human rights: traditionally they are big places, however many homely touches we may add. Even though the buildings may be smaller these days, and have more ‘homely’ touches to alleviate them, services remain places where too many people are let into an individual’s life. Bureaucracies have the same effect: bringing public discussion and impersonal forms into people’s most intimate moments. Meg Lewis, who found a route out of the impersonal space of a mental health ward into the ordinary family home of her Shared Lives carer, talked about the thick file of ‘everything embarrassing I’ve ever done’ which followed her around the hospital, before life became what it should be: “going on adventures and making friends”.

A couple of weeks ago, we saw the corrosive effect that letting strangers into people’s intimate lives can have, as a team of workers at a large service dehumanised and assaulted people with learning disabilities, feeding off their distress for their own amusement. This BBC exposé was almost a carbon copy of one approaching a decade earlier, and of institutions exposed as havens of abuse through decades before that. Every big scandal and big reform programme, with their senior leaders, big budgets, committees and frantic timescales has failed to stop this kind of abuse happening. They have seen a big problem, and tried to impose a sweeping solution, whether it was a service restructure, or new commitment that lots of organisations signed up to, or new regulations. Those programmes have been too huge to pay attention to the small places, close to home.

Meanwhile, Shared Lives carers and their families, like the hundreds who attended Blackpool Shared Lives’s 30th anniversary celebration last week, have been quietly helping people to live good lives, in ordinary family homes, as part of a supportive household. There are 10,000 Shared Lives carers now; there have been many thousands more during our 40 plus year history. It is their willingness to share their homes and personal lives with another individual that has been the success of the model, as people have achieved small things like learning to cook chicken curry, joining a local club, or travelling on the bus independently for the first time. Those small things make a huge difference.

Our challenge during Shared Lives week, which this year has a human rights theme, is to make a big deal out of those small changes. To have huge ambitions for Shared Lives whilst making sure it is offered to thousands more people. To convince the big bureaucracies of local government and the NHS that this human-sized, infinitely variable model is part of the solution to the huge problems facing our crisis-ridden public services. Rachel, a Shared Lives Plus Ambassador who works as part of the team to speak about Shared Lives and to help us improve it, said at the Blackpool event that she is “lots of different things at once”: she is not just someone to be supported through a service. Even a brilliant service will fail her unless she has the right to be a football fan, a brilliant knitter, a charity ambassador, a cook.

We need now more than ever to believe in the value of getting the small things right. Getting the small things wrong always means we get the big things wrong and ultimately it will thwart every ambition we have as individuals and for our public services. We are often asked how we are going to scale up Shared Lives. Shared Lives week is a time when everyone can help us to do that through spreading the word, celebrating your local Shared Lives carers and, for the first time, signing up as a supporter. But just as important as scaling things up is our willingness to scale things down. To think about the small places, where human rights begin.

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.

How can we bring proven models to more people?

Ewan King, Chief Operating Officer at the Social Care Institute for Excellence wrote this blog for the Richmond Group of charities here. Here is an extract:

In January along with our partners Think Local Act Personal we launched the DHSC-funded Care Innovation Network.  Our goal is to answer this question: “How do we take proven person-centred models of care and support and bring them to more people?”

Locality leaders report that bringing the best to scale has perhaps been hindered for many reasons, in particular a short-term approach to funding, parochialism, lack of long-term planning – and regulatory barriers. But good initiatives have also failed to spread because statutory bodies have not always sufficiently engaged with others, especially the voluntary, community and social enterprise sector (VCSE) and citizens and communities.  More engagement would support both the establishment of more innovative forms of care, and also their growth and expansion.

Alex Fox, CEO of Shared Lives Plus, in his review of VCSE’s involvement in delivering care, bemoaned the sector’s often peripheral role.  He wrote: “Through drawing on people power as well as money, VCSE organisations are often uniquely able to offer support which looks at the whole person and whole family, thinking preventatively and whole-lifetime”. Moreover, VCSE organisations are increasingly creative in accessing resources such as social finance, and then applying different business models – such as franchising – to grow services.

The Care Innovation Network seeks an alternative route to growth of what works. In our network, we have many VCSE providers – like Shared Lives, Local Area Coordination and Stay up Late, so that they are part of the way forward from the outset. Working alongside us, applying co-production principles, are people with the experience of using services and their carers, so that solutions are well thought through, tested, and more likely to achieve the intended benefits of better experiences and outcomes.

Read more here. 

Horror

After last night’s BBC Panorama expose I looked back at what I wrote here eight years ago, after Panorama secretly filmed abuse in Winterbourne view.  I could cut and paste much of it into a response to this latest misery: so little has changed. I could also of course look further back – to the Mansell reports, to Goffman, and furthe into the history of asylums and how places of supposed safety become places of horror. Once again we have universal revulsion, leaders committing to action and promises that things will change. It was the gap between what everyone in our sector had agreed was necessary and what collectively we seemed able to change which led me into thinking and writing about the visible and invisible asylums which we still build, maintain and whose existence still seems to shock us, though they hide in plain sight.

The reality is that the public eye will move on and the 2000 people living in places like Whorlton Hall will find themselves back in the shadows, whilst non-disabled people in high-paying jobs return to talking about the challenges of commissioning, shared commitments to quality and the importance of building senior relationships, as if this week had highlighted some minor technical challenges, instead of abuse, ‘learning disability’ given as a reason not to resuscitate people, solitary confinement and unexplained deaths.

No. None of us are doing nearly enough, including the charity sector: a glance at social media makes plain the gap between the measured responses of charities and the raw anger and grief of families who have lost loved ones, or switched off their TVs fearful for a son or daughter locked up miles away. Outside of Twitter and one or two organisations like Learning Disability England, the voices of people with learning disabilities themselves were absent: not called upon to speak as experts in the programme, nor the news items that followed it. It is no coincidence that people with learning disabilities are so frequently abused, and that they are, as Philippa Bragman of CHANGE once pointed out to me, the only group of people routinely excluded from what should be their own civil rights movement.

After Winterbourne I worried that if there was a mass closure programme, nothing adequate would be put in place of the so called Assessment and Treatment Units, where there is often little visible assessment or treatment. I thought that NHS commissioners might at last turn to models like Shared Lives with less timidity: when things are this bad, surely it’s time to try something new? Whilst Shared Lives grew for many groups, for this group of people with learning disabilities held most deeply within the medical system, it didn’t happen. And here we are again. (Of course – this is just the latest incident to be exposed. How much abuse has taken place in the last eight years with no hidden cameras there to witness it?) The ease with which the system reverts from this public crisis back to uneasy stasis is terrifying.

I’m convinced we need a closure programme: nothing else will create the urgency to start new community services. Our statement with Voluntary Organisations Disability Group and Learning Disability England set out three things that would take power and money away from the class of leaders who have consistently failed to use it well and put it in the hands of people and families. Those local and national leaders must:

  • Make themselves accountable to people with learning disabilities, autism and mental ill health, and their families, by creating formal relationships with local user-led and carers organisations and advocacy services.
  • Ensure everyone using long-term NHS care can access a personal health budget and an independent advocate to help them find and use new forms of community support to help them get out of hospital.
  • Work with high quality voluntary and community sector providers to redesign care around the person with a clear expectation that everyone can live a good life in the community.

We know that no single model has all the solutions and heaven knows the charity sector is far from perfect. Though Shared Lives is consistently rated as the safest and best form of regulated care, there have been incidents of abuse in its long history. But if, as organisations providing care for public benefit not for profit, we don’t believe that we can do better, what are we for? It is criminal that the NHS remains content to buy ‘care’ for thousands of pounds a week from organisations which clearly have no business in people’s lives, whilst its ‘too busy’ to work with us and other community services who have shown we can offer infinitely more human care. It is not even as if there is a financial challenge: the reason there are so many private sector organisations in this most complex and important part of the health service is because they are charging exorbitant fees. I read that the owners of this latest failure made £40m last year: their investors will not forfeit a penny of it for the misery they caused. What else could that money have been spent on?

As with Winterbourne View, it was the abuse which was shocking but what we should be focusing on is the model of care we saw which fostered that abuse. Any commissioner paying thousands to that organisation , who had spent five minutes in that place, talking to those staff, should have been able to spot that they were in a place which couldn’t possibly offer a good enough life to people: an institution, where people were forced together behind locked doors, shut away from friends, family, life, staffed by people with the most basic understanding of humanity. In a service which will have claimed to be specialist, expert, necessarily eye-wateringly expensive. The majority of staff working in medical care are good people, but we would not accept this rate of failure, nor such limited ambitions for happiness, for any other group of people. Those good staff will be good staff in less institutionalised services, and would find those roles infinitely more fulfilling.

If we want change to happen this time, we need to put power in the hands of the people who are genuinely calling for it: people with learning disabilities and their families. I don’t trust anyone else.

Healing the Generational Divide

The All-Party Parliamentary Group (APPG) on Social Integration has launched Healing the Generational Divide interim report.  We gave evidence to the inquiry on how Homeshare can bring generations together, such as these housemates with a seven decade age gap.

The report highlights four areas for bridging divides:

  • Intergenerational communities: the role of local, grassroots initiatives which unite generations through shared interests such as art, music, politics and conversation, what they can do to be more effective, and how local and central government can help them thrive.
  • Intergenerational public services: how intergenerational connection can be embedded throughout care and education, on public transport, and via schemes to help older people stay active in their communities.
  • Intergenerational housing and planning: how existing housing can be used to improve intergenerational connection, and how new housing, as well as whole towns and cities, can be designed for all ages.
  • Technology and intergenerational connection: the role of technology as both a source of disconnection and loneliness among different age groups and as a potential tool for strengthening intergenerational connections.

It also suggests some interesting initiatives alongside ours such as:

  • 1p charge on self-service checkout machines:  technological changes, which reduce human contact, can fund initiatives that support greater social interactions.
  • Co-location within care and education: all nurseries, schools and care homes should be encouraged to link up.
  • A new flagship national volunteering service for older people.
  • Tax break for volunteering within public services.
  • ‘Take Your Headphones Off Day’: to promote conversation on public transport

Interesting and no doubt media-hooking ideas. But I think that Homeshare reminds us is that there is no reason for the generations to live separately. This divide is not something which has happened due to human nature, it’s been inadvertently but actively fostered by the way we have organised public services and public spaces around age-specific needs or activities. There’s also an economic element, particularly in middle-class areas where housing has become unaffordable to an entire generation. We need to reverse those divisive policies not to tackle a problem which has occurred naturally, but because our current policies are creating and maintaining the problem.

We will see fewer intergenerational divides when we are able to see people first and foremost as individuals, not as their ages.