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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The Green Paper

My think piece on the Green Paper is in the Guardian today:  Human stories will convince the public that social care is worth investing in

“More caring, social kinds of social care already exist. Some, such as Homeshare and Local Area Coordination, Community Circles and Wellbeing teams need scaling. Others, including Spice’s Time Credits and Community Catalysts’ micro-scale approaches, reach thousands or, like Shared Lives, are national. When people hear about these approaches, with their human stories of small achievements that mean the world, they connect with them. They see the value of ordinary life chances for disabled people or a good last 1000 days for older people. A green paper based on those stories could finally persuade the public that social care is worth investing in.”

https://www.theguardian.com/social-care-network/2017/dec/18/human-stories-will-convince-public-social-care-investing-in?CMP=share_btn_tw

No such thing as neutral

What does the social care sector need from academia? There has long been a gap between what national government says about the need for social care to achieve and evidence outcomes, and the reality of the kind of basic functional support that local government can and will buy. This gap has widened during austerity to and is now unbridgeable without significant additional funding for councils to provide adequate social care.

There is no ‘neutral’ position for academics to take on this. Do they look for outcomes which are set out in legislation but which many services, particularly for older people, are not asked or paid for and do not attempt to achieve? To whom do they ascribe blame for the gaps and failures they will surely find: hard pressed, underpaid frontline workers, providers which teeter on the edge of financial viability, local government commissioners who lack the money to buy what people need, or central government which has devolved spending decisions to the local level? Those are political judgements.

Funding bodies and the institutions which bid to them put the majority of their resources into researching the most prevalent models. That is pragmatic – those models offer large sample sizes and are the most significant budget lines in council and NHS budgets – but it also ensures that the evidence base for traditional models strengthens, whilst innovative models like Shared Lives, Homeshare, Community Circles, Time Credits or Local Area Coordination are locked into an endless cycle of small scale qualitative research which finds them to be promising but unproven. This in turn entrenches risk-averse procurement on a ‘better the devil you know’ basis: certain kinds of predictable failure look less career-threatening to commissioners than the possibility of success, particularly where ‘success’ would mean outcomes valuable to people but not valued by the broken economics of our health and care system.

I am honoured to be joining Birmingham University as an honorary senior fellow. Birmingham University’s school of social policy has the mission  ‘to change the world as well as to understand it’ – as 2017 draws to a close, it feels like the world has never needed changing more.

This is an extract from my blog for the university: https://www.birmingham.ac.uk/research/perspective/academic-decisions-for-social-care-sector.aspx

Reverse auctions

We live in a society which auctions the care of disabled and older people. Not to the highest, but to the lowest bidder.

This has been going for years. Sector leaders have long condemned the concept of ‘reverse auctions’ for care packages, in which a homecare or other support contract is won by the lowest bidding care provider, but care contracts can still be put out to tender using a scoring system which puts lowest price as the most important factor and the Care Provider Alliance expressed concern about this issue again this year. In other areas, when an individual is assessed as needing support, a pen portrait of their needs is circulated to care providers approved to be on the local area’s ‘dynamic purchasing system’ and those providers bid for that care package. Again, lowest price is at least one factor in their bids and providers have reported feeling that the real extent of someone’s support needs have not been made fully clear, meaning that the care package offered will not meet their needs. In some areas, only one ‘affordable’ option is presented to the individual who may not realise they are not obliged to take it. These auctions are presentable as offering ‘choice and control’ to the individual, despite the obvious limitations on that choice. Any provider which achieves a certain ‘quality score’ can enter the framework and be on the list, but it is easy inadvertently to set conditions on quality which effectively eliminate innovative and start-up services which may not have a track record of providing conventional care. (This is why the duty on councils to develop diverse provider market places in the Care Act is so important: its implementation needs much more attention.)

This was not what was envisaged by disabled people and their families who developed personalisation, which was the idea that people would plan the most effective care and support when they were in control of an individual planning process which started with what a good life looked like, not with a list of low-cost services. Planning creatively in this way enables people to make best use of their own capacity and of the family and community resources available to them. That also usually results in the most independence and lowest overall cost to the state, whereas narrow price-focused processes bring missed opportunities for independence, or lead to family care breaking down. But instead of people planning a life, and then choosing the support they need to live it, care providers in some places now compete for the individual, and an algorithm makes the choice. (Approaches like TLAP’s Making It Real are designed to push back against this kind of pretend personalisation.)

The Shared Lives model is resistant to that kind of automation, partly because it is based on matching the individual with a specific Shared Lives carer: both parties meet and make a choice to share their lives with each other before any support package starts. That resistance can be a double-edged sword though: if Shared Lives looks too complicated or ‘messy’ to include on an area’s shiny new system, it may just be omitted from the choices offered to people. In one area, commissioners have apparently described Shared Lives as a ‘luxury’ model, despite the overall package being demonstrably lower cost than traditional equivalents, sometimes by tens of thousands of pounds.

These problems are not just a symptom of the lack of money available to pay for care providers. They are also symptomatic of cuts to the teams which plan and buy care on behalf of us all. Experienced commissioners who understand how social care works are more likely to be able to recognise the value of truly personalised support and to think through the consequences of cut-price care, which can rapidly lead to a crisis and expensive medical care.

Most of us do not have to contemplate what it would be like to have a price put on our happiness, safety or dignity. There has never been greater pressure upon price in our public services. We can’t rely upon algorithms to deliver good lives: we need to develop care navigation and brokerage teams who can help people make good choices, and which can help to build community approaches like Shared Lives. People who need support will be more likely to achieve real value for money within local marketplaces, where people and local providers can connect with each other, rather than left adrift in virtual ‘emarketplaces’ or to the free market.  And we should simply outlaw processes which put lowest price first.

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.

Mystery and Bureaucracy

A twitter exchange between Rob Mitchell and Prof Chris Hatton put me in mind of the famous quote from L’Arche founder, Vanier: “Some people say that communities start in mystery and end in bureaucracy”.

Chris, a skilled combiner of academic rigour and humanity, said, ‘Bureaucracy is a vampire. It feeds on people’. Lots of people reading this blog will relate to that, perhaps because they will have felt their own lives drained by working within, or even living within, a public service bureaucracy. What is bureaucracy though?

We all come across bureaucracies. They feel inhuman: some are machine-like; some fanged as Chris says; some have tentacles which we feel reaching around us into our lives.

But a bureaucracy is always a group of people, choosing to behave in a certain way. People will dispute that word “choosing”. The nature of bureaucracies is that, whilst someone at some point wrote their rules, and other people added to them, they feel like they have come to life, operating beyond the control even of those who profess to lead to them.

But whilst Vanier’s quote is often read to mean that every community – a group of people who share some beliefs and ways of behaving – already has some bureaucracy in it, it also suggests that every bureaucracy is also a community.  He could equally have said that every community starts in mystery, and ends in mystery: the mystery of how a group of humans created something which feels so utterly unlike themselves.  The bigger the bureaucracy, the deeper its mystery: the gap between the values of the people within it and the way we feel instructed to behave. This is why I think the challenge facing public service leaders is no longer how to scale up (the business growth model of marketised public services) but how to scale down.

But even in a vast bureaucratic community, no rule is unchangeable, or incapable of more than one interpretation. The choice to be human can feel difficult, or downright dangerous, when we work within a bureaucracy, but nevertheless we make choices. Ultimately, then, the nature of a bureaucracy, lies in the choices the people within it make every day.

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.