Rebuilding communities and rebuilding social care are deeply linked challenges

This article appeared on the Social Care Institute for Excellence website on 25 May here. (I’m a SCIE Trustee.)

The focus of the first weeks of the crisis was on sustaining hospitals. It was a difficult, complex but clear challenge and it was met. As it became clearer that the virus had swiftly found social care’s most vulnerable services and was sweeping through people living in care homes in particular, politicians and planners have tried to bring into focus the much more fractured picture of social care services, which range from large nursing homes, through community support services and homecare, to individuals organising their own teams of Personal Assistants. We found out what we were good at: building huge hospitals in a matter of days is an incredible achievement. And what we are not good at: identifying where deeply entrenched inequalities in our communities will meet inequalities in our public services and create human tragedies.

There was a widely-shared photograph of the head doctor at the London Nightingale Hospital waiting for his first patient at a lighted door in a vast metal shutter. It’s a heroic image. Of course, the Nightingales, fortunately, remained almost unused as the daunting acute care challenge was largely met. There are few images of the thousands of people who died unnoticed in care homes, much less those isolated at home who were visited by untested and poorly equipped social care workers. It is hard to take a picture of the vast number of small, spontaneous acts of kindness that have happened within Mutual Aid and other grassroots community groups, and we may never know their contribution to keeping people alive and hopeful.

There is already talk of big, structural change post COVID-19. It will be tempting to do what we were good at during the peak of the crisis, but what we need in the next phase and beyond is unlikely to revolve around easily-defined service delivery challenges which can be achieved by a small group of heroes.

Support people need in the place where they live

As much as we will need our hospitals and medical facilities to recover and thrive, we will need a wider support system that enables people to live safely and well at home. That is where the safety and wellbeing of older and disabled people has always been found, and the current crisis has just brought home how important it is for people to be able to get the support they need – formal and informal – in the place where they live. For many people facing an extended period of isolation and the risks that will bring to their mental health, the role of friends, neighbours and – socially distanced – family will feel increasingly important.

The virus has brutally exposed many of the weaknesses in our social care system. But it has also highlighted an abundance of caring within our communities. We have a stronger desire to help each other than we realised: three quarters of a million people volunteered to help the NHS and social care before the programme had to be paused while the system tried to catch up. We have more creativity than we knew: people and organisations finding a million ways to offer their help, knowledge or skills to others, often for free. What we’ve found does not, of course, begin to balance out the devastating impact of the things our services lack, let alone the people we have lost.

Both formal and informal needed

And those good things are no more evenly distributed than the deaths and the shortages, exacerbating already deep-rooted inequalities. But given how difficult the coming months (and years) will be, we must make everything we can of what we’ve found, and what people have offered to give.

Social care is rooted in an attempt to bring together the formal and the informal: the social as well as the care. We know that people will not live safely and well where one or both are absent, or cannot work together: the large impersonal institution where there is support but community is kept at arm’s length; the isolated home where an individual endures hours without human contact.

So, we need a renewed drive towards living at home, or where that is not possible, a place which feels small and personal enough to feel like home. We can no longer tolerate people of any age living long-term in big, impersonal institutions. We must see the connections which people are making with each other, in all of their humanity, diversity and messiness, as being as crucial to the next phase as the smoothly-running hospital was to the first. And if we are to see people stepping forward to connect with people who use or live in support services, they will need to be able to feel a shared sense of ownership of those services: community as a mode of ownership, not just community as a ‘setting’. Put bluntly, few people want to volunteer for a large profit-making business owned somewhere offshore. If we want people to continue to step up, connect and be generous, they must be offered a greater sense of ownership and real relationships in return.

Look to the community

Neighbourhood level care organisations have already shown they can reach tens of thousands, like the famous Dutch Buurtzorg dementia support service with its self-managing community teams, or Shared Lives which reaches 14,000 disabled and older people through a family-based support model which behaves like a franchise in every way except for the fact that no one owns it, nor profits from it. We have seen these community-rooted organisations proving adaptable in the face of COVID-19, using online technology to create and sustain connections which are traditionally carried out face-to-face. The Shared Lives sector is seeking investment in an unprecedented modernisation of its recruitment and matching processes to ensure they can carry on during lockdown, and that the home-based support model can be a much bigger part of a pandemic-proof and sustainable future.

The crisis is still peaking and the bleakest news from the social care sector is yet to come out, as we start to understand the scale of what has happened, but not yet been counted. Many smaller provider organisations are already staring at bankruptcy. But we cannot wait until the crisis has passed to start building the future. We must start now.

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.

See you in the New Year

At a time of year when many of us are focused on family events and our closest relationships – and when it can be most painful to lack those connections- this story from PossAbilities Shared Lives in the North West struck a chord with me:

‘Colin’ stays with his Shared Lives carer Molly a few times a year for short breaks, so when he asked her to help arrange his 40th Birthday party, it was quite a challenge, but Molly went all out to organise, food, music, invites and so on. Colin was overjoyed with the arrangements, but very disappointed when few guests turned up. Molly isn’t the giving up kind though, so she suggested they try again for his 41st. She rallied all his friends and work colleagues and kept contacting people until she was sure that lots would come this time. As a result, Colin enjoyed the best birthday party ever. Even better, he met his first girlfriend through this party: something he’d been dreaming of for many years.

That kind of life-changing event happens when you have someone on your side, who never gives up because they think of you as a friend or family member, not just a ‘service user’. Our challenge is to bring those kinds of relationships to thousands more people, through Shared Lives, Homeshare, and in 2020, new ways for people to share their homes and lives, and support each other.

It’s also lays down a challenge for the whole of social care: how do we move away from low-cost, low-longevity care and support ‘transactions’ between professionals and clients, and instead invest in caring relationships that people choose, that everyone contributes to, and that last the distance? This isn’t just a funding issue: parts of our sector have a 25% – 30% staff turnover rate, or services that lock people into the most expensive and least effective part of the system. There is a financial as well as a personal cost to those statistics; money which would be better spent recruiting the right people into the right roles and offering them the right combination of support and freedom to help people live good lives: independent but connected.

So as we look back at 2019 we are proud of the scale of our membership network’s achievements, reaching over 14,000 people:

  • In Wales there are over 1,100 people using Shared Lives – passing the 1,000 mark for the first time.
  • In Scotland the number of people using Shared Lives passed 500.
  • And the UK has over 1,000 Homeshare participants for the first time.

…and we’re proud of the quality and outcomes of that work: 98% good or outstanding from the latest CQC inspection figures, and nearly 90% of people completing our national outcomes tool saying that they are more socially connected through their Shared Lives support, as well as 83% saying it improved their physical health and 88% their emotional health.

We’re proud of the innovations we led this year including partnerships with:

And we’re also proud of how we approached our work: putting people with lived experience and front line workers in the lead wherever we can, such as our new Shared Lives Carer Champions, who are supporting other Shared Lives carers in their regions, who joined our Ambassadors with lived experience, to help us to reshape our work and do more on a peer-to-peer basis. We began to explore how to become a rights-based organisation with support from the British Institute of Human Rights and a domestic abuse aware organisation and team.

We’ve never had bigger challenges in social and health care, which means in 2020 we will need big ambitions when it comes to scale, results and the values we bring to our work. It’s not going to be an easy ride, but there are too many people who don’t have the lives, homes and relationships they dream of for us to give up, so I’ll be keeping Molly’s example in mind, whenever the coming year feels like a struggle!

I hope everyone enjoys a restful and well-earned break over Christmas and the New Year. We’ll see you in 2020.

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. 

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.

Imagine having another 8 minutes of social interaction a day

CMM reports that “Just ten minutes of social interaction a day improves wellbeing in dementia care”, according to a study by researchers at University of Exeter Medical School, King’s College London and the Social Care Institute for Excellence (SCIE). “The Wellbeing and Health for people with Dementia (WHELD) programme trained care home staff to increase social interaction from two minutes a day to ten, combined with a programme of personalised care. It involves simple measures such as talking to residents about their interests and involving them in decisions around their care.”

This is important work by the universities and SCIE, but how heartbreaking that a study is required to prove the need to people with dementia to have just ten minutes a day of social interaction, and that previously they could expect just two. What would the wellbeing and health of people with dementia be like if they received an hour a day of social interaction? What would any our wellbeing be like if we could look forward to just ten?

This is why we need socially-based models of support like Shared Lives and Homeshare, and why people consistently report that they are happier and healthier within them. We need as much investment in researching the groundbreaking impacts of these smaller, social models, as we have currently into tweaking existing models which can seem to offer people so little.

Getting off the merry go round

Here’s a blog I wrote in my role as a Trustee of the Social Care Institute for Excellence (SCIE)

Coproduction is a clunky piece of jargon for an important concept. There are lots of good definitions out there. Personally, the way I think of coproduction is that it is about everyone who is involved in a service or organisation, including those who use it and their families, making decisions together as equals, and then working together as equals to make those decisions happen. A truly co-produced service is co-designed with full involvement of people who use it and families from the blank sheet of paper stage, it employs people with current or recent lived experience in paid delivery and leadership roles and there are elected representatives of those people on its board.

There is lots which is co-produced about the sector in which I work, but at Shared Lives Plus, we felt and still feel that we have a lot further to go.

Shared Lives is a family-based way of providing people with learning disabilities, mental health problems and other support needs with the care and support they need in ordinary households. People are carefully matched with approved Shared Lives carers and when both parties feel there is a good match, they share home and family life, with 7,000 people living with their chosen Shared Lives carer as part of the household and 6,000 regularly visiting their Shared Lives carer for short breaks or day support.

So each Shared Lives arrangement is co-produced by the individuals and families involved. What people decide to do with their time together and how they live their lives is based on a care plan, but worked out day to day by the individual and their Shared Lives carer. Like any family life, it involves negotiation and give and take. Chris says: “I go to more places than before, like we just went to Brighton – I couldn’t do that before, there would be a lot more people involved and a lot of planning. Our trip to Rome would have taken much longer to plan for example. In residential I couldn’t go out to a club without having to do a risk assessment and care plan. I feel happy living here. A lot happy. I have independence but also care when I need it.”

We felt though, that the highly co-produced nature of individual arrangements was not reflected in our work to support the sector at a national level. So we are supporting and encouraging Shared Lives schemes to build independent local groups of people involved in Shared Lives who can help make local decisions and, inspired by the work of CHANGE, we have employed seven (very) part time Ambassadors, all of whom have current or recent experience of using Shared Lives. The Ambassadors speak publicly about Shared Lives. They are drafting a Charter setting out what good Shared Lives looks like, which we will be encouraging all local schemes to adapt and adopt with local people. They are also taking part in reviews of Shared Lives schemes.

The biggest impact we have felt as a team is Continue reading

Three divides

There’s plenty of talk of integration when it comes to services, but what about the national bodies which regulate and support those services? Here are three divides which don’t make sense to me: what could we do to integrate across them?

  1. The divide between inspecting the quality of services and helping those services to improve. CQC inspects the quality of services but has no remit to support services to improve, for which a struggling service would need to approach one of a range of agencies which are largely non-statutory and less securely funded, such as the Social Care Institute for Excellence (SCIE) and Think Local, Act Personal. Shouldn’t we do both at once? Failing NHS trusts and GP practices can access some funded improvement support, but social care services cannot.
  2. The divide between inspecting quality and ‘economic regulation’. CQC inspects the NHS and social care services for quality. Monitor is the economic regulator for the NHS. There is no equivalent to Monitor in social care, other than a limited CQC duty which affects a few of the largest social care providers if they get into serious financial difficulties. It’s not possible nor sensible to look at quality and financial viability in isolation from each other. NHS Trusts which are driven only by balancing the books will make all the wrong decisions when it comes to achieving outcomes and real value for money, which can only be done by taking a holistic view of the local health and care system.
  3. Regulating providers but not regulating commissioners. Both used to be inspected, but now it’s only providers. The problem with this is that some of the issues which inspectors find with providers are actually problems with what commissioners decide to buy and how much they are willing to pay for it. There have been many abuse scandals, but have any commissioners been held to account for years of squandering public money buying no-outcome, dangerous care, rather than using that money to develop services which help people to live well? When services are found to be failing, commissioners have as much of a role in fixing the local system as providers.

At the moment it’s possible for large amounts of money to be spent on separate inspections of the quality and of the finances of the same NHS trust. Further separate inspections could find social care services failing. None of those inspections can contribute to fixing the problems they find and they will not even consider the role commissioning of health and social care is playing in creating pressures and gaps, nor will they have much to say about the way in which failings in one part of the system are creating problems in another.

We need a more holistic picture than that.

There may be a case for merging some of these bodies. In the meantime, there is certainly a case for them working as closely together as the law allows.

Searching for simplicity

I gave evidence to the Joint Committee which is scrutinising the draft Bill this week. You can watch the session here:

http://www.parliamentlive.tv/Main/Player.aspx?meetingId=12294. I found watching it back a little excruciating – it was my first oral evidence session and I was fairly nervous – but hopefully managed to get our ideas across.

I also had a really fascinating evening at the invitation of Stepping Out, the spin-outs support organisation which brought together five successful social enterprises delivering health and care services with the care Minister, Norman Lamb MP. The spin-outs in the room gave you a really good sense of what is achievable and the difference which shared ownership and mutuality can make to an organisation. Spectrum Community Health CIC, for instance, has spun out some of the most challenging areas of health care in Wakefield, including sexual health services and health services for offenders and homeless people. The organisations in the room were all social enterprises and all in some way mutuals or co-operatives which had not only shared ownership with employees, but were also exploring how to share ownership with communities, citizens who use health services. We talked about organisations which thrive on the complexity of broken systems, but are bamboozled by the complexity of ordinary humans and their relationships. And we talked about the virtues of ‘not fitting in’, a position which Shared Lives folk can relate to. Perhaps when you are an organisation which doesn’t fit neatly anywhere in the system you can be better at understanding the joins, clashes and gaps between services. Perhaps you can model your organisation around human relationships rather than ossified service systems…. When you start working with people’s families, relationships and communities, you can sometimes find abundance, even if everywhere you look in the traditional service system you find scarcity.

Norman Lamb committed himself to exploring how the draft Care and Support Bill and the implementation of the White Paper could create a space for this kind of innovation, and ensure that legislation, regulations and rules weren’t working against people’s creativity.

Meanwhile, Andrea Sutcliffe, CEO of the Social Care Institute for Excellence, went to visit Newham in London to see the Shared Lives scheme, some local micro-enterprises and the work of our sister organisation, Community Catalysts. Andrea seems to have been very impressed: http://www.scie.org.uk/news/opinion/newham.asp