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 shelter of each other

Our colleagues and members in Northern Ireland hosted an event for commissioners exploring how Shared Lives could be developed as a new form of short breaks, day support and home from hospital care for older people.

We are grateful to Fionnuala McAndrew of the Health and Social Care Board who helped convene and kick off the day and to Mary Hinds, of the Public Health Agency, who summed up beautifully, drawing on an Irish proverb I’ve not heard before: We live in the shelter of each other.

I’d be willing to bet that that rings true for you as much as it does for me. For years now, the ideal living situation through the eyes of long term care and support services has been independent living. It’s not a bad goal, particularly when contrasted with institutional alternatives. But that language doesn’t tend to figure in our own descriptions of what we dream of, unless or until our independence is at risk. When people describe happiness, for most (admittedly not all) of us, it involves having people  we can rely on. In other words, we dream of interdependence, not complete independence.

This can be an uncomfortable idea for long term support services which are wary of ‘creating dependence’. Few of us would want to be dependent on a service. But perhaps it is not so much that becoming dependent is ‘inappropriate’ to support relationships, but that the way we construct support relationships can be an uncomfortable fit with our naturally interdependent nature. People working in social care often find their roles put strict limitations on the definition of ‘care’ and are too rushed and impersonal to feel ‘social’. This incompatibility between the human nature of both people who give and those who receive long term care is at its most stark when the intimacy of personal care is carried out by a succession of strangers.

Shared Lives is not about dependency in the pejorative sense and for some people it is very much a stepping stone to getting their own place. Half of the people using Shared Lives Continue reading

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

Person Shaped Support

 

Lesley Dixon is Chief Executive of PSS (Person Shaped Support) which has a long history of social care innovation and is one of the leading independent providers of Shared Lives services. PSS has just published a report on the outcomes and costs of its Shared Lives support, which includes powerful personal stories alongside data which should interest many people working in the sector. Lesley writes:

Social Impact Reporting is a big priority for us. At the end of each year, we make it our business to take a detailed look at what works, what difference our services make, what is cost-effective and ultimately whether we are doing any good for the people we work with.

We recently published our first Social Impact Report for Shared Lives and TRIO,  which looks at the fantastic achievements made by our Shared Lives schemes across the UK; in Merseyside, Wirral, Manchester, Wales and the Midlands. The report includes information on the people we work with, the pathway they follow when they come to the service,  the outcomes we support people to achieve (including case studies) and what our service-users think about the service. It outlines some cost-benefit analysis information, looking at the value of our Shared Lives projects when compared with other, costlier forms of care in the areas we work in, and also looks at some of the innovative work being done with our TRIO project in Wales, the hospital-to-home work we are trialling in some of the schemes, and our work with Shared Lives Plus on the My Shared Life tool.

Perhaps our biggest finding from this report is around the savings our scheme can make to the public sector. We found that Shared Lives is 51% cheaper than residential care and 35% cheaper than supported living. This means that on average, a Shared Lives Placement at PSS would represent an annual saving of £23,491 per person, compared to if they were to be placed in residential care, or an annual saving of £11,922 if they were placed in Supported Living.

Whilst there are some really good findings and inspiring case studies in the report, we know there is more we can do to keep getting better.  We plan to use the My Shared Life tool from Shared Lives Plus to help us manage impact on an ongoing basis, as opposed to a reflective report at the end of each year.  This will help us ‘course correct’ where we know that some of the things we are doing could be more effective or where they aren’t working.  We also really want to embed some measures which can help us demonstrate that what we are doing is high quality (such as some of the NICE Quality Standard measures), as well as some other tools which can help us establish baselines and demonstrate an emotional impact – such as people no longer feeling socially isolated or lonely.

 

Response to the CLG Select Committee pre budget report on social care

In its Pre-Budget report for their Adult Social Care inquiry today, the Communities and Local Government select committee calls for The Chancellor to bring forward £1.5bn funding from the ‘Better Care Fund’ to plug the hole in social care funding in the year ahead (2017/18). The Better Care Fund is a national funding pot which was intended to be spent on improving adult social care and bringing social care and health together, easing pressure on hospitals and the NHS. It has been announced but is not due to be released until 2019-20, despite the current crisis in social care funding which is seeing care homes and home care businesses closing and worrying signs of quality and safety dropping. The Committee also calls on the Government to commit to closing the funding gap for the rest of the Parliament through to 2020.

We gave written and oral evidence to the Select Committee about the role which innovations like Shared Lives and Homeshare could play in transforming social care. I agree with the committee that the Better Care Fund should be brought forward. But this would be to plug a current gap between what is being spent and what would be needed to achieve anything approaching minimum standards. It would not result in ‘Better Care’, but a slightly eased crisis. For better care, we also need a national vision for social care which has real ambition, which is prepared to take some sensible risks in scaling up the most promising models and significant additional investment. Programmes like Nesta’s Realising the Value and our work with SCIE and PPL on Total Transformation point the way towards a health and social care system which would work and be affordable long term, rather than relying on crisis handouts year after year. We all deserve better than that.

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.

Integration or co-operation?

I’ve been in a couple of roundtables recently in which the Labour party has outlined their plans for integrated care. It’s fairly broad and high level stuff at the moment, but a key part of their proposal is that health, care and perhaps other aspects of the welfare and support system will be integrated with a single budget, with, as I understand it, councils in the lead on commissioning (presumably using the new Health and Wellbeing Board structures) and NHS organisations acting as delivery bodies, with less emphasis on increasing competition from independent providers.

It’s an alluring idea, which addresses a split between health and social care which has never ‘worked’ and was hotly debated when the NHS was created in 1948. Back then, the NHS could focus on illness treatment and most people got any ‘social care’ they received from their families, not the state. Now the NHS and social care need to be effective and sustainable for massively increased numbers of people with manageable long term conditions, not short illnesses likely to be either treated or fatal.

I’ve blogged before about the need to integrate not just services, but the informal/unpaid support system and the formal/ paid service system. An integration of health and care will not automatically achieve this. A recurring phrase in today’s discussion, for instance, was ‘patient rights’. There was a little, but much less, about citizens (not patients) and shared responsibilities. It would be easy to integrate around the existing public services power bases of hospitals and professionals, not around individuals, families and communities. This would be to integrate illness treatment services, not health and well being (eco)systems.

The language of rights in relation to health and well being is interesting. Charities and politicians alike are more comfortable talking about rights and entitlements than about responsibilities. This can mean that charities contribute to ‘clientism’ and that politicians can’t deliver on promises. Continue reading