Can we escape the invisible asylum?

Since their origins in the Poor Laws, our ideas about helping people have been tangled up with feelings about excluding or punishing them. To become the subject of state support was once to cross a physical threshold: the gates of the workhouse, lunatic asylum or long-stay ‘hospital’ for disabled people. Many of those thresholds have disappeared into folk-memory, but the idea of separating people into those who are citizens of their communities, and those who are wards of the state, remains threaded through our health, care and support services, in ways which have become so familiar they are invisible.

The rules and assumptions of the invisible asylum can be felt in ‘community’ services which feel nothing like community. They start with assessments and means tests which challenge people to prove their level of need, often at the cost of believing in their independence. They are felt in approaches that treat families who have managed on their own for years, as though they are capable only of being ‘difficult’ for the very services which ignored them before they reached crisis point.

This is not to decry the value of our underfunded and undervalued public services. But for our welfare state to survive, we need to be able to see it clearly: the miracles our services can achieve in the operating theatre and their small, devastating failures to see the person underneath the patient’s gown. There was a time when most of us could ignore those failures, hoping that we wouldn’t find ourselves in need of state support, or would need it only for a brief period which we prefer not to think about. But now we live longer lives, with longer periods of ill health, frailty or social isolation. Whether those years – and in many cases decades – in which we need state support will amount to a good life is not solely in the gift of GPs, surgeons or social workers. It depends for most of us on the relationships we have with everyone we rely on: our family and friends, alongside people paid to help us.

So we need models of community support which focus as much on ‘community’ as ‘support’. Working for nearly eight years with the remarkable people involved in Shared Lives and Homeshare has brought into perspective for me the inability of many services to escape the asylums of their origins. I have also witnessed supportive relationships which do not sacrifice the social for the care, which recognise interdependence is as important as independence, and that caring is an emotion before it is an activity.

In my forthcoming book, A new health and care system: escaping the invisible asylum (Policy Press, February 2018) I outline a possible health and care system which would take the ethos and practices of asset-based and community-orientated support models and build a system and a sustainable economics around them. A system which would demand, measure and pay for the goals – wellbeing, resilience, confident households – we all agree we want, but seem to accept we cannot have. The people who currently shape services have proved themselves incapable of designing approaches to achieve those more human goals. They can only be co-designed with the people who make long term use of services, their families and workers. They would offer us more but would only work if we were prepared to have more asked of us in return.

Those services would be organised at a more personal scale, perhaps eventually eschewing the traditional idea of an organisation entirely, so the book focuses as much on what needs scaling down to human size, as on scaling up the innovations of which we need more. It starts with those failures we should see as inexcusable, yet ignore or dismiss, but it is rooted in the belief that we can and do care for each other, and that the only future for our public services is to create spaces in which people with support needs, families and front line workers can have the relationships we would all wish to have.

You can order A new health and care system: escaping the invisible asylum from the Policy Press. To register to attend the launch at Nesta on 28 Feb, which has done so much to support our work, click here. The Northern launch event with Greater Manchester’s Chief Officer Jon Rouse is at MetroPolis on 20th March.

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Stroke survivor Brian gets ready to move on

This story from Shared Lives South West shows how Shared Lives is providing great health care as well as social care. The story can be found here. It’s a great contrast with the story about room renting which hit the headlines last week – see my previous blog. We are working with NHS England and 7 local NHS CCGs to develop new health care options. Here is an extract from the full story with thanks to Shared Lives South West, who continue to inspire us all:

If you rewind a year, Brian Lee’s future looked bleak. While out walking in local woods he had a stroke and ended up in intensive care and endured a four-month hospital stay.
His health deteriorated further while in hospital as he also suffered two minor heart attacks and Brian was extremely weak.

The medical trauma left him with complete memory loss and his mobility was severely compromised- making it difficult for him to walk even short distances.

Fast forward to now and his life couldn’t be more different.  Thanks to the support and care he’s received from the Shared Lives team and ultimately his Shared Lives carers Jeanette and Alan Eames as well as his own determination, Brian is well on the road to recovery.

He’s recently managed to plan and go on holiday to Thailand and is preparing to move out to his own flat and live independently.

“I was so stubborn and determined. I had to prove to myself that I can still do things,” said Brian.

“Jeanette and Alan have helped me through it all. I was decrepit feeble creature when I arrived at their home in March.

“I couldn’t walk down the drive, now I can nip up to town. I never dreamt of being so independent again when I came out hospital.

Since moving in with the Eames’ family, near Okehampton, they have been there to support him every step of the way-  from helping him with appointments to liaising with his friends to help him move forward and sorting his medication and preparing him for his trip to Thailand, where he visited with no support. It was paramount his carers got him ready for the trip and made sure he was able to manage all his medication.

The Shared Lives team were also on hand to make the match with the Eames family. They charity’s Funding and Benefits team also maximised his benefits.

“They prepared me and made me ready for life outside,” said Brian.

“I think what was most important to me was to realise limitations early on, then I think you have to scale back on your expectations, then you can move forward positively.
“The main help was with my medication, that was a key thing. With Jeanette’s help there were visits to the doctors to make sure my balance of medication was right, as when I came out of hospital it was all wrong.

“I was on knock-out drops, I wasn’t living life as it should be. By 11am I wanted to go back to sleep again. I spent most of my time just sleeping. It was too much and there was a real temptation not to take them.

“Jeanette got it sorted out for me.”

“I also made sure he was taking the right medication at the right times to start. Now he has pots and has hang of doing it all himself,” said Jeanette.

Banking also became difficult as he struggled to remember numbers.

“If you ask me about a phone number or bank details and I wouldn’t have a clue,” he said.

With advise from Jeanette, they decided to change passwords to key dates that he could remember.

“That way I could do somethings myself with support,” said Brian.

The full story is here.

The need for a Slow Policy movement

(I was not aware when writing this blog of this 2005 paper by Peter Bate which has a similar theme and which draws on In Praise of Slow by Carl Honore, also new to me. Some ideas percolate, well, slowly.)

There is a slow food movement, which began in Italy, based on the belief that fast food lacks real nourishment and flavour and that its intensive production methods and short cuts are unsustainable for the environment within which it is grown and produced. Slow food is produced with time, care and the understanding of local culture, farming and ecology which can only be developed over years, or even generations. It tends to value small-scale production for its sustainability and for being rooted in community and place.

At present, government and the NHS express the importance of a policy change through the urgency of the deadlines they set themselves and their partners and the amount of money they can ‘find’ in an emergency to fund the change. NHS Sustainability and Transformation Plans (STPs), in which every area was required to set out how its health system would transform itself to survive the current resource crisis and become sustainable, were clearly important, and therefore urgent. So, most were drafted by small groups of very senior people, who regretted they had not the time nor resources to engage widely, particularly with charities, grassroots groups and people with lived experience who are the most complex and time-consuming to find and talk to. It is no surprise that STPs, despite many containing necessary and pragmatic ideas, have been widely reported by the media as ‘secret NHS cuts plans’.

This cycle of crisis, frenzied activity and shallow changes is endlessly repeated. The urgency turns out to be illusory every time: whilst a report will be rushed out in months, underlying causes of problems will remain unaddressed for years. STPs are morphing into the next set of initials whilst the NHS and social care continue to go bust.

We need a slow policy movement in our public services: a new norm for how to create change. No more flurries of reports and plans from the same group of highly paid people, who remain embedded in group-think. No more heroic leaders on a mission to fix things.

Instead, the slow policy approach would be to cultivate different people and networks which are more deeply-rooted in the lives and service cultures of those affected: people with lived experience, their families and front line workers, who all need training, preparation and a slower pace in order to contribute meaningfully. A change programme would examine the problem or challenge from the point of view of people use services, families, front line workers and people who do not or cannot currently access the service. The conversations with them will start with “What does a good life look like?” not “How can we improve, cut or close replace our service?” The questions will include, “What are you willing to contribute to achieving the goal we all agree is important?” (which is a different question to “Will you pay for our service?”, or “Will you volunteer for us?”)

In place of short term pilots generating tentative findings, new models should be implemented on a small scale but with a plan to scale them up incrementally if they appear to be working, until they replace the current system. As my colleagues in Local Area Coordination say, ‘move slowly, to move fast’. With people who use services genuinely involved in their design and delivery, we would finally have the confidence to remove resources from models which do not work, rather than continuing to resource the status quo, regardless of how much more effective new models proved.

What could be

Finally, social care is being recognised by our political leaders as vital to our nation’s health and wellbeing. All parties now recognise that ordinary people can be called upon to pay vast amounts towards their care, in contrast to our free-at-the-point-of-need NHS. There is public recognition of what social care is, for the first time. But now we need to visualise what it could be.

Our annual State of Shared Lives Sector reports give a glimpse of a possible future. They have consistently shown that Shared Lives is growing in England, and now we have evidence of new growth in all four home nations. They have also highlighted the difference Shared Lives makes to people’s lives. Many people who might otherwise have lived on their own or in a care home are finding a settled home with their chosen Shared Lives household. Meanwhile, a new group of older people and others who live with their families, but need regular overnight or daytime breaks, get those breaks from visiting their chosen Shared Lives carer, often matched with them because they both enjoy the same activities, rather than struggling with the stress and disruption which more institutionalised breaks services can bring. People live well and sometimes achieve the impossible.

This year our annual report for England (as reported in Community Care) paints both an encouraging and concerning picture. In previous years, Shared Lives has grown strongly, despite the cuts which are shrinking all other forms of social care. The net growth has been about 1000 additional people per year. This year, the number of people using Shared Lives in England has grown by around 580, to just under 12,000 people, around half of whom are living with their Shared Lives carer, and the other half are split between short breaks and daytime support. Look at the numbers of people using Shared Lives by region, however, and it is clear that there is a widening gap between those regions which are accelerating and those which have in previous years been stalled, and are now starting to slip back. So the regions which are growing, have added over 1,100 additional people. Half of this growth comes from the North West, with London and the South West splitting most of the rest. There are signs of growth in the North East, which has been one of the smallest regions and where we are working with directors’ association ADASS and the region’s Shared Lives schemes and partners to create a regional hub. The South East and Yorkshire have seen significant reductions, however, after having previously been regions which were using and developing Shared Lives strongly. The East and West Midlands remain essentially unchanged and the East of England, which has been the smallest region for some time, is now falling. Meanwhile, the model is growing in Scotland, Wales and Northern Ireland and we have embarked upon ambitious new programmes in each nation, with strong support from the Wales Government in particular.

With so much news about cuts and the crisis in the NHS, it is easy to believe that the future of public services will just be less of what we have now. But we believe Continue reading

Letter to the Prime Minister

A letter to the Prime Minister from the chairs for three select committees calls for cross party talks and consensus on a long term settlement for social care. Having given evidence to the recent Communities and Local Government Committee on this issue, I ‘m heartened to see the three committees coming together to call for positive change.

We have been here before of course. There have been cross party talks and the beginnings of consensus, but they have either gone nowhere or unravelled as pre-election party politics put point-scoring ahead of doing the right thing by older and disabled people. The Dilnot reforms gained cross-party support but were an early victim of austerity.

The temptation will be to aim for big, simple, government-sized announcements, like the complete integration of heath and social care. These will not solve the issue, and could even do more harm than good if, for instance, the whole system is integrated around the power bases of the big local hospitals, at a time when we need desperately to shift power and resources into the community. There is clearly a need for a big injection of funding to avoid widespread catastrophe and whole care industries such as home care collapsing completely. But again, short term funding is necessary but not sufficient, if it is spent only on the things we spend it on now.

So by all means let this lead to more money and more joined up health and care systems, but the more important and much trickier challenge is to use this moment not simply to shore up today’s approaches, but to invest in scaling up the most promising community and family based initiatives. The goal should not be integrated bureaucracies but unified goals: a health and wellbeing system which aims to create and sustain wellbeing, which connects people and supports family carers, which values resilience. It has never been more appropriate to take some risks. We have of course been calling for ambitious investment in initiatives like Shared Lives and Homeshare which have demonstrated they work. But we also need to be prepared to scale down bureaucracies and organisations whose unresponsiveness demonstrates they are too big, through accelerating approaches like personal budgets, personal health budgets and the involvement of voluntary, community and social enterprise organisations in designing and delivering interventions in people’s lives which are focused on health, not just illness and which are social as well as genuinely caring.

Always compassion

I chaired the final session of a King’s Fund conference on co-production and the six principles of the Five Year Forward View today. Mark Doughty who developed “life changing” arthritis as a young man and is a senior consultant with the King’s Fund reflected on the difference between the kinds of relationships we take for granted in most of our lives – respectful, compassionate – and the relationships we have within ‘the system’, which can feel far removed from that. Initiatives like the late Dr Kate Granger’s “Hello my name is” campaign and the work of Andy Bradley and Frameworks for Change are attempting to bring the compassion back into what should already be compassion-focused fields of work, but too often aren’t.

Delegates suggested that the gap between the relationships we want and the relationships we have if we work in or are users of health and care services can often come down to time. As resources get tighter, time gets more and more pressured. Stress levels rise and even the common courtesy of remembering to introduce ourselves to people who might need intimate or highly stressful care from us can go by the wayside. Bradley’s work has a strong focus on self-awareness and self-compassion as the building block for compassion for others.

It could be argued that the current cuts to health and care service budgets make creating the time and space required for compassion simply impossible. But even within stressed and faltering public services there is an element of choice about what people at each level within the organisation choose to value and allot time to. Neil Churchill’s presentation on Always Events – practices which are identified jointly by people using services, practitioners and managers as being important to compassionate, effective care – showed that the case for compassion is often also the case for achieving outcomes and creating better value for money.

Deciding what is important and what to spend time on is of course about power. Part of the reason that the Hello My Name Is campaign was – shockingly – needed, is that there is a pervasive history of medical professionals believing in status and deference within the NHS. What felt important to ‘patients’ is not automatically felt to be what is most important to the services which they use and ultimately pay for.

We can experience the demands of ‘the system’ as all-powerful and inhuman, but in reality there is no ‘system’, there is only us, and what we choose to value and give time to. At present there are, though, more divisions between the different tribes of our public service world than there are shared beliefs around which we can build our public service sector into a unified movement. Our challenge – which is also the challenge of making co-design and co-production into Always Events in all public services – is to insist upon compassion and connection as always more important than anything else we might achieve, and when the pressure, stress and frustration mounts, to model it even as we fight for change.

 

It’s still time to Transform Care

We are involved in lots of very promising work at the moment around Transforming Care: the work on which NHS England is leading to get people with learning disabilities and mental health problems or other ‘complex’ or ‘challenging’ needs out of medical institutions and into ordinary homes in the community. The programme is also aiming to reduce significantly the number of people who go into such institutions when they have mental health and other crises.

So far the various post-Winterbourne View scandal workstreams have been a great (ie bottomlessly depressing) example of what can happen when the full might of government and the wider system suddenly throws some of its best leaders, hundreds of millions of pounds and countless staff hours at a problem, backed up by all the pressure of targets and ambitious timescales: a target setting industry springs up, there are huge amounts of activity, much of it happening under almost intolerable stress, but the best spin you could possibly put on the results of several years of this is a gentle decline in the numbers of people in ATU. Some people have left, whilst others have taken their places. Where there is a bed, it will be filled. Collectively, we did lots of perfectly sensible things, but missed several essential things, without which real change could not happen.

Most importantly, ‘we’ – people working in leadership roles in the sector – turned out not be the right people to be making change: we didn’t have the courage or imagination to cede our leadership roles and power to people with learning disabilities and their families because there was neither the time nor resources to do so in our important and urgent work. Except that it turns out there was all the time in the world, because here we are five years later pretty much still on the starting line, and all the money we needed, because we have spent millions. People with learning disabilities and their families would, I believe, have led us slowly and haltingly in the right direction, with results no worse and potentially a whole lot better.

I’m optimistic that the work we are now doing with NHS England will get real results. We have had really strong interest from CCGs who are expressing an interest in the NHSE funding to demonstrate and scale up Shared Lives as a health intervention, not just for people with learning disabilities but lots of other groups as well such as people with mental health problems and older people leaving hospital. We are also developing an alliance contracting model in which we hope Shared Lives provider organisations and other like-minded providers with different models will work together, with the involvement of advocacy and self-advocacy organisations, to put a different offer in place. And we are a strategic partner in the IPC programme, with funding to support the IPC areas to think differently about providing personalised health care in general and Shared Lives specifically.

We’re doing this work because one of the intractable problems at the moment is that pared-down commissioning teams can see that new models might be better, but don’t have the capacity, expertise or relationships to develop them. Providers with good models can’t develop new models without a commissioner helping to define what is needed and in a position to purchase it. Commissioners are reluctant to block purchase care in any case: they are aware they are supposed to be helping individuals to make very individual choices. But without new models of care to choose, individual choice remains theoretical, so we have the worst of both worlds: neither old-style commissioning using its buying power to demand and invest in a better model, nor a functioning marketplace in which personal budget holders can find providers with something they want.

Our work will bring Shared Lives as a new model of care to many more people, but Shared Lives of course cannot be the only solution, and making it available doesn’t on its own shift the current power imbalances. Without changes at a deeper level, I worry that care will remain untransformed for too many people. Here are four changes it is not too late to make:

  1. We need a contracting model which pays for outcomes not time, which any commissioner and provider can use. Where care is paid for by the hour, the incentive for providers is to maintain, not reduce, extremely high levels of support, even where people no longer need it and the ‘care’ is now getting the way. Our alliance contract model will attempt to build this kind of contracting model and our outcome measuring tool will be one way in which those outcomes can be measured, but models of that kind need to pushed out right across the system.
  2. We need to build marketplaces in which people who are receiving care and their advocates can share limited information with suitably vetted providers, so that providers can start making offers to people who have a personal budget or Personal Health Budget, with the support of brokers. This will require investment but save more money than it costs.
  3. We need to build proper scrutiny into the system, led by people and families. Rather than the patchy system of Learning Disability Partnership Boards which work only when commissioners choose to engage with them, but are essentially an optional extra, commissioners and clinicians who are currently unaccountable must be obliged to report regularly on progress to a group led by self-advocacy and families’ organisations. This will focus their minds and make failure and stasis less of an option.
  4. We need ways to move resources from the state system into support for people who live in the community or with their families, to avoid the current cliff edge where a family in crisis can be told “there’s’ no money” one day, only for thousands of pounds a week to be found the day after the family collapses, to pay for institutional care. One way to do this would be for commissioners to be obliged, whenever funding is identified for emergency or medical care, to offer that money first to the existing provider, or to family carers, for them to draw up an alternative spending propose to sustain family or community care. Another would be for individuals to be able to share in savings made when a medical care package is replaced by community care, to build up a contingency fund to spend when in crisis.

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