Sharing lives and self-isolating

Across the UK, thousands of Shared Lives households are at home as self-isolation becomes mandatory. This means that disabled people, people with mental health problems and others who need significant support are living in a safe place with their Shared Lives carer and for many, this is the safest place they could be. Unlike other services which rely on a staff rota, no one need come in and out of the home and the household can be more resilient and less disrupted by self-isolation than services which lose workers who are self-isolating but currently unable to get tested.

We also know that Shared Lives households are under pressure:

  1. 80% of Shared Lives carers are over 50 and 20% are over 70 and themselves in the at-risk group.
  2. Usually, Shared Lives should not be 24/7 care, but at the moment it is: this can mean huge pressure on households as routines are disrupted and there is no break from caring for someone who is distressed and whose behaviour may be difficult to manage.
  3. Like others, Shared Lives households are largely without protective equipment (PPE) and facing shortages of basics and food caused by panic buying.
  4. As short breaks and day support services are cancelled, many self-employed Shared Lives carers are without income, and the government has not yet addressed this for the self-employed. This also means there are Shared Lives carers with capacity to do more and who want to help. We’ve had members wanting to open their homes to patients and NHS staff.

At Shared Lives Plus, our team moved quickly to 100% home working and online and have been working flat out on two priorities for our members: inform and connect. People need the right information – not always easy when most government info has been unclear, incomplete or has needed to be corrected. Not helped by government making a drastic u-turn in its strategy (which was the right thing to do: their modelling turned out to be wrong) but then telling people nothing had really changed: far better to have been clear that the strategy had changed and why. Connection will be of growing importance the longer this situation continues.

We are addressing the four pressure points above:

  1. We have issued guidance for local organisations on identifying and prioritising the households most at risk, mitigating risks where possible and planning for possible scenarios, including infections within the home and Shared Lives carers being unable to care. We have outlined fast-tracked procedures to get new support carers approved.
  2. The key message from our guidance on supporting Shared Lives households under pressure is to help the household build its resilience and two kinds of connections: with other Shared Lives households and with neighbours. We are aiming to get a new Positive Behaviour Support advice service up and running shortly if we can resource it. We’re helping members share what’s working and the team are taking calls where people are struggling.
  3. We have been ensuring that Shared Lives carers, and community care services more generally, are being considered along with other social care services, for PPE and giving practical advice. The UK’s failure to plan for PPE demand mystifies me and has left thousands of the people we rely on most at unnecessary risk. This appears to be being rectified, but local problems are still huge. We’ve written to all the supermarkets explaining what Shared Lives carers and Homesharers are why they need access to food.
  4. Government announcements are imminent about support for the self-employed. In the meantime, our advice to Shared Lives schemes has been: do everything you can to support your Shared Lives carers. We will need everyone during this crisis and in the recession which will follow it. Councils have been given funding to support stability in the social care sector, and the good ones are using it to keep providers afloat and social care workers in this vital workforce. We are supporting Shared Lives schemes to identify their spare capacity and consider how Shared Lives carers who are not currently working can safely support households who are struggling, and respond where possible to the need to discharge thousands of people from hospital. Virus testing, adequate PPE and ensuring people and organisations are working as part of one team will be vital in making this work.

I’d like to thank the 10,000 Shared Lives households and 500 Homeshare households who are contributing so much to keeping people safe and well during this crisis, and the Shared Lives Plus team who have made me so proud to work for such a great charity these past couple of weeks.

James and Bronte
James and Bronte digging vegetables at home, taken by Shared Lives carer Andy

How would we know?

If an area becomes ‘asset-based’ in everything it does, how would you know? You would expect to see everyone – public services and charities; citizens and people with power – thinking, speaking and behaving differently. This is the second of three blogs written with the Chair of Think Local, Act Personal, Clenton Farquharson MBE, and available in full here. Last time, we revisited the Asset-Based Area (ABA) model which tried to distil down how an area can become asset-based in everything it does from strategy down to the grassroots, into ten actions, starting with mapping your local assets, and including sharing power with people who are usually excluded, and building a diverse range of community approaches which are now gathered in an online catalogue. Three years after the original thinking, we are developing the ABA model in more detail through the Social Care Innovation network.

In this blog, we want to think about how we would know that an area had become asset-based. What would we measure and how?

Greater Manchester has adopted use of system activity measures collected every quarter, combined with a range of personal outcome measures collected locally across the city region. These include measures already well-established across public services, such as health outcomes, measures of demand and cost, and wellbeing outcomes: recognising that wellbeing – living a good life in a good home and a welcoming community – is intertwined with more clinical outcomes.

Key Human Indicators

Many areas and organisations have Key Performance Indicators (KPIs). Perhaps every area needs Key Human Indicators. Are people achieving wellbeing? That usually means that people who need support are able to experience the right balance of independence and connection for them, which will change at different times in their lives. For workers and systems, KHIs will include warmth, kindness (as set out in Julia Unwin’s brilliant report) and dignity. Networks can be more important than bureaucratic service structures. In Shared Lives, friendships are seen as key indicators of wellbeing, so Shared Lives Plus’ national outcomes measuring tool asks participants how many friends they have and whether Shared Lives support is helping them make and sustain those connections, or getting in the way.

Read the rest of this blog on the Social Care Institute for Excellence website, in the Social Care Innovation Network’s minisite.

Best days

Chris and Peter were matched together by Moray Shared Lives in Scotland. Chris is a retired farmer who wanted to give people the chance to benefit from visiting his land and the woodlands he has planted. He was approved by Shared Lives Moray to take on the Shared Lives role and then matched with Peter, who visits for day support twice a week. Peter has dementia and lives at home where he is cared for by his wife. The two four or five hour sessions a week with Chris give everyone time to re-charge their batteries and lead a life beyond giving and receiving care. You can see and hear the two men talk about their Shared Life here

 

The film was made after Peter had recently lost his ability to walk following an adverse

reaction to prescription drugs. The time that Chris has, combined with the opportunities he provides for walking regularly, helped Peter recover his ability to walk, which has enabled him to continue to live in his own home and community. Without the time and support given by Chris, Peter is likely to have been placed in a residential care home or provided with 24 hour paid carers in his own home. In both cases his life would have diminished significantly and the costs of caring for him would have risen sharply. 

 

Peter is not always as alert and lucid as on the day of filming. Everyone involved believes that the support from Chris brings Peter some of his best days.

Government funds our innovation network

We’re excited to be part of a partnership led by the Social Care Institute for Excellence and the Think Local, Act Personal network, to help local areas scale innovative community-based approaches to social care. This builds on the partners work which has developed models and guides on how to take a whole-area, whole-system approach to innovation, getting away from endless small-scale, short-term pilots which lack ambition. In the current climate where budgets have been slashed and pressures are rising, the most inspiring areas are taking an all-or-nothing approach which recognises that, while initiatives may start small, there must always be a plan to move core resources into the models which work and away from those which don’t. (See Total Transformation, the Asset-Based Area and the family of community-based approaches launched at Social Care Future).

We’ve already had a large number of applications from local areas and from innovative support models and we’ll be building on the 2,000-strong TLAP Building Community Capacity network, which brings together activists, entrepreneurs and organisations working in this space.

Government backing for this initiative is a promising sign that, despite the delays in publishing the Green Paper, the Dept Health and Social Care recognises the need for radical thinking and inspiration for our sector, which is under unprecedented pressure.

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. The launch at Nesta on 28 Feb, which has done so much to support our work, is here. The Northern launch event with Greater Manchester’s Chief Officer Jon Rouse is at MetroPolis on 20th March.

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