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A new health and care system: escaping the invisible asylum is published by Policy Press and launched at Nesta in London with Simon Stevens (video), Chief Executive of NHS England, who said, “This is a profound and timely call for a different relationship between people and the services and institutions of the welfare state. It’s a radical and necessary call to arms for a more human, personal and connected society” Read the introduction here and get a 30% discount code.

Florence is 95 and Alexandra is 27. Their Homeshare story has been watched 25 million times. People are using Shared Lives to recover from mental illness in the community: two minute version and seven minute version  of our new film.

Our £1.75m partnership with NHS England is developing Shared Lives as a new form of healthcare with 8 local NHS trusts. The Shared Lives Incubator social investment programme is investing in Shared Lives in three areas. Lloyds Bank Foundation,  the Big Lottery Fund, SCIE and partners are growing Homeshare in the UK.

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96%: Shared Lives beats all comers

Every year the Care Quality Commission (CQC) publishes its report based on inspections of all health and care services in England. The report does not distinguish Shared Lives from the much wider community care sector this year, which obscured the fact that, according to data supplied to us by CQC, 5% of Shared Lives schemes are outstanding (the joint best results in the sector) and 91% are good (the best results in the sector). 4% require improvement (the best results in the sector) and none are inadequate. 96% good or outstanding sets a new standard for what’s possible, in the teeth of continuing austerity and budget cuts.

Congratulations to our members for raising the bar again this year. Feedback from members tells us that the support they get from the Shared Lives team, including tools such as our quality framework and outcomes measuring tool, have helped achieve great results, particularly for schemes which have made it to ‘outstanding’.

We are proud of our sector, but not complacent: no model or group of providers is perfect, so we will be continuing to work with people with lived experience, Shared Lives carers and scheme workers to spot what can get better, and make sure it does!

 

Pretty cool, in our own way

I’m biased of course, but the Shared Lives Plus conference doesn’t feel like other national conferences. Partly that’s because the people involved in Shared Lives and Homeshare are a friendly bunch, and make the event welcoming and informal, despite having nearly 200 attendees. What’s made the most difference though, I think, is that people with lived experience take a central role. Our Ambassadors are all people with lived experience of using Shared Lives support and they co-chair the event. This year Meg, who spoke about her Shared Lives experience in parliament earlier in the year, co-chaired with Victoria Collins, the acting Director of Adult Services for Milton Keynes, who gave us a warm welcome to her city. Ambassadors also help run the workshops and speak in the plenary session, this year on the theme of equalities. You will find their presentations over the coming days on the Shared Lives Plus website.

This year, Peggy, a Shared Lives carer, talked about her experiences supporting a young person born male, who has at times identified as female and at times as male. She talked movingly of her own learning curve on an area of life that she previously knew nothing about and the lessons she had drawn from the people who live with her: “We are taught we should accept people who are different. How patronising. Who are we – the majority – to decide whether to ‘accept’ someone. We should value everyone for who they are but most of all we should learn from them.”

Ambassadors James, Michael and Nick all gave their own take on equality. Nick took us on the travels he has been on with support from his Shared Lives household, and said that for him, equality is being “different by equal”. He says, “I have never wanted to be anyone else. I am far too happy being me.”

Michael’s initial reaction to his manager asking if he could present on equality and diversity was “What are you going on about?!” Michael’s presentation echoed Clenton Farquharson’s. Clenton, Chair of Think Local, Act Personal, reminded us that the language we in the social care and charity sector can use is often baffling to people, and that we need to speak plainly and stay down to earth, if we are to be inclusive and share our power. Michael, who is a Toy Story fan, said that he could pursue his own dreams, “to infinity and beyond”, because of the quality of support he gets and his message to each delegate was to remember that:

“We are all good.

We are all special

and

We are all pretty cool, in our own way.”

If we remember that in everything we do, we won’t go far wrong…….

Strengths-based work with children and families

A new set of resources and guides from SCIE sets out how to use a strengths-based approach in working with children and families. My blog on this is on the SCIE website and reproduced here:

Children’s services professionals dedicate themselves to helping children have good childhoods, but a recent Children’s Commissioner report estimates that “the majority of looked-after children – 74% – experienced some form of change during 2016-17: a placement move, a school move or change of worker. This is equivalent to 53,500 children”. Antony Corrigan, now an adult, said of his experience of moving around as a ‘looked after’ child: “You find it difficult to make a friendship group and you become alienated….I had at least 10 placements, including two children’s homes and in terms of social workers, I lost count, but I probably had about 10 in total. I just wish there was more consistency in the care I was given. It’s so easy to get lost in the system, no-one’s pushing you or encouraging you.”

Around the same time, a Times Educational Supplement (TES) article drew fire for labelling parents of children with Special Needs as “challenging”, advising Special Educational Needs coordinators in schools on how to manage three kinds of “challenging” parent: angry, pandering and non-engaging.

These felt like two examples of where a ‘strengths’ or ‘asset-based’ ethos was needed within children and families support services. These concepts are based on the simple idea that support services need to look for what people can or could do, and the naturally-occurring resources around them, not only for what their needs or problems are. Our close relationships are one of our most important assets, even where a family or household is under pressure or some things are not working as they should.

Some families become so dysfunctional that the children within them are harmed and need to be elsewhere. But we should set the level of risk or actual harm being caused to a child against the inability of state care to provide the key strength of consistent family relationships to the majority of looked-after children. Responses from parents to the TES article pointed out that parents of children with special educational needs typically contribute vastly more to the wellbeing and education of their children than even the best professional can do in their limited time with that child. Professionals should set the challenge they experience from parents, or their ‘over-protectiveness’, in the context of the very real barriers they may have experienced from professionals who do not always reflect carefully enough on the amount of relative power they hold, and how they wield it. Some families break under the pressures they face, but are they always given every chance and all the support they need to have a chance to fix themselves?

Children and families support professionals aim to empower children and their families, but there can be a gap between that aim and the way that families experience the help offered to them, or the impact of that help. Bridging that gap requires us to be willing to share our power, resources and knowledge, in ways that do not always feel comfortable. This is about the personal skills and values of professionals: having the humility to listen, learn and change, but it is also about the values of the systems we work within: do they give us the space and time we need to form real relationships with people, or do they pressure us to churn people through as quickly as possible? Do they talk about positive risk taking but swiftly turn to blame if something goes wrong? A strengths-based culture is one which does not just build on the strengths of children and families, but also on the strengths and potential of its workforce at every level.

The asylum our services offer – and the asylums they can become

You can now download the introduction to my book, A new health and social care system: escaping the invisible asylum, for free from our website.  In the book I try to show how we are wasting the potential of people with long-term support needs, and the creativity and caring capacity of families and front-line workers, in traditional health and care systems. Drawing on what I’ve seen and learnt in nearly nine years working with people involved in Shared Lives and Homeshare, I argue for a new approach to supporting people with long term health conditions or support needs, with a more human ethos at its core.

Readers can enjoy a 30% discount if you would like to buy a copy from the Policy Press, by entering the code POSLHC18 when ordering.

Click here to read about the launch which featured Simon Stevens, Chief Executive of NHS England.

The question of who is helped by government has for centuries been a question of who is included and excluded from their communities. Many would see government help as a safety net which cannot capture everyone, but needs to ensure that the most sick and poor do not fall outside society. But the origins of the welfare state lie equally in decisions about who to exclude
from the communities in which we live…. continue reading

I lost count

Children’s services professionals dedicate themselves to helping children have good childhoods, but a recent Children’s Commissioner report estimates that “the majority of looked-after children – 74% – experienced some form of change during 2016-17: a placement move, a school move or change of worker. This is equivalent to 53,500 children”. Antony Corrigan, now an adult, said of his experience of moving around as a ‘looked after’ child: “You find it difficult to make a friendship group and you become alienated….I had at least 10 placements, including two children’s homes and in terms of social workers, I lost count, but I probably had about 10 in total. I just wish there was more consistency in the care I was given. It’s so easy to get lost in the system, no-one’s pushing you or encouraging you.”

Read full blog on the Social Care Institute for Excellence blog here.

The Inverse Commissioning Law

The Inverse care Law, first suggested in The Lancet in 1971 by Julian Tudor Hart says that those who most need medical care are least likely to receive it. Conversely, those with least need tend to get the best use from health services. As John Appleby, then of the King’s Fund, wrote for Health Service Journal, some minority groups and people in less affluent areas are offered “poor quality services, to which they have relative difficulty securing access and they suffer multiple external disadvantage.” Whereas the affluent, more confident middle classes, whose life expectancies are already longer, are also better at finding and accessing healthcare, and services in the areas they live are often better too. So in “inner cities and deprived areas, there tend to be fewer doctors working with higher caseloads and sicker patients”. This unfairness cuts at the roots of the NHS, designed to be for us all.

The Inverse Care Law was suggested, and has since been well-evidenced, in the context of healthcare, but it’s not hard to see how it applies to every public service. As council-run social care services have come under more pressure, their budgets have been reduced most in the most deprived areas, as central government funding has been cut and councils forced to rely more upon council tax and business rates, which are lower in poorer areas. People with learning disabilities are a group most likely to need social care support, but who may have communication challenges which make it hard to find, demand and specify that support, or to complain and change providers if it goes wrong.

One of the reasons why the inverse care law if self-perpetuating, is because it applies not only to who can access support, but also to who gets to design it. In other words, we could reframe Tudor Hart’s law as, “those who most need to reshape public services, are likely to have the least power to do so”. ‘Coproducing’ public services with those who make use of them and their communities is more talked about than carried out, despite a huge range of tools and guides on how to do so. To be done properly, it requires those used to highly codified decision-making processes, based around reports, proposals and committee meetings, all wrapped up in impenetrable language, to be willing to start afresh with accessible, common-sense questions like, ‘What does a good life look like to the people who use our services?’ and ‘What part can we all play in achieving that?’ That takes time which already feels crammed over-full. It takes humility: for highly-paid professionals to recognise that their frantic and stressful working lives are consistently failing to solve the conundrums at the heart of our public services: how can they be affordable but high quality? Personalised yet universal? It takes trust in the very people planners are used to thinking of as being most needy and vulnerable, and having the least to offer.

A few of the most articulate, confident and brave service users make it onto the decision-making committees, but they are likely to be people who have the education, support networks and resources to be able to contribute ‘appropriately’ to those committees, without being paid to do so. The people who potentially have the most radical changes to offer can be from groups and communities committees find ‘hardest to engage’. I am also frequently in rooms where public service decisions are being made by a group which is entirely or almost entirely white and where the gender mix is the inverse of the predominantly female health and care workforces.

This Inverse Commissioning Law will only be upended when we stop seeing service planning as something which can be done by any one group of people on its own. If the goal of public services is to provide support in proportion to need, and to reach furthest towards those farthest from the centre, then designing our services and systems must be a collective effort. State services invented the inverse care law, but outsourced money-making services profit from it and many not-for-profits have failed to do enough to tackle it.

Re-designing health and social care services to tackle inequalities Continue reading

I never dreamt of being so independent again

Tired of waiting for the government to publish its much-delayed Green Paper, the Local Government Association has published its own. The Lives We Want to Lead launches a public consultation on the funding question which can seem like the politicians’ only focus, but also asks what social care in the future should actually offer and deliver. The LGA say they seek “to start a much-needed debate about how to shift the overall emphasis of our care and health system so that it focuses far more on preventative, community-based personalised care, which helps maximise people’s health, wellbeing and independence and alleviates pressure on the NHS.”

The paper includes this story illustrating how Shared Lives can take a situation deemed ‘complex’ or ‘challenging’ and make it simple, helping someone get out of hospital and back to the community: “I was living with my partner, running a B&B when I had a serious stroke and later two minor heart attacks. After four months in hospital, I was depressed, frail and my memory and cognition had deteriorated. We knew I needed more support with daily living than my partner could provide. I was unable to return home and it made me frightened about my future, with clinicians uncertain about my further recovery. I wanted to live locally, so I could continue seeing my partner and I missed my dogs.

“The Shared Lives scheme matched me, with two trained and approved Shared Lives carers who shared my sarcastic sense of humour, had dogs, and lived close by. They helped me through it all. When I arrived at their home, I never dreamt of being so independent again. I couldn’t walk down the drive. Now I can nip up to town. My Shared Lives carers helped me gain strength and confidence, walking a little bit further each time, until I could walk independently again. They helped me adapt to my memory loss with strategies for managing money and banking, and supported me to make meals and manage my diet.

“Since then I have booked a holiday and travelled on my own. I am very optimistic about life and planning a move into my own flat. Without the Shared Lives scheme I would have undoubtedly spent longer in hospital, had less choice about where I lived, and had a slower recovery. It is so important that money is available to ensure that schemes like this exist.”

The paper draws on data from our My Shared Life outcomes measuring tool which found that:

  • 92 per cent of people felt that their Shared Lives carer’s support improved their social life.
  • 81 per cent of people felt that their Shared Lives carer’s support made it easier for them to have friends.
  • 73 per cent of people felt involved with their community and 93 per cent felt their Shared Lives carer’s support helped them feel more involved.
  • 84 per cent of people felt their Shared Lives carer’s support improved their physical health and 88 per cent their emotional health.

I was asked to comment as Chief Executive of Shared Lives Plus and independent chair of the Joint VCSE Review, and said “Local government and the voluntary, community and social enterprise [VCSE] sector share a vision for social care which helps us all to live good lives in our own homes with the people we love. Immediate investment is needed to stabilise social care. Then councils and the VCSE sector must work with people who need support and their community organisations to codesign a social care system which intervenes early, sees the whole person and can stay with people and families for the long haul. Human, effective and sustainable
approaches already exist: great councils have been pioneering their development. Now they must be scaled up and become the norm.”