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!

 

Advertisements

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…….

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.”

 

The caring professions

The NHS was designed in the 1940s for brief encounters: healing us or fixing us up. We often experience it doing that astonishingly well. But now 15 million of us live with long-term conditions; three million with multiple long-term conditions, which cannot be healed or fixed. People want just enough easily-reached support to live well, and to become a patient as infrequently as possible, but instead many develop long term, increasing reliance on intensive support services which not only feels miserable, it is bankrupting our service economies. We have developed the treatments and services which people need, but we have not yet developed ways of offering them which get the best out of anyone involved.

Public service leaders behave as if their main challenge is to build the right kinds of systems and organisations. It’s not: the challenge for them and in fact, for all of us who use or will use our health and support services, is to build the right relationships between people who need support and people who offer it.

I’ve often heard people who work in the mental health system talking about the need to keep someone out of the mental health system. Those professionals, who are themselves skilled and caring, and generally believe their immediate colleagues are too, see the system that they are all part of as toxic and dehumanising. How do groups of skilled and caring people become dangerous bureaucracies?

Many people now use personal budgets to opt out of those bureaucracies and set their own rules to frame the support relationships in their lives. But that does not work for everyone. Shared Lives demonstrates you can develop a national, regulated framework in which thousands of people can develop very individual, and therefore very human relationships. That can happen consistently, safely and at lower cost. Radically devolved models like Buurtzorg and Community Catalysts’ networks of micro-enterprises do the same.

We can I believe scale down our big public service bureaucracies to behave in more human ways. That doesn’t mean reaching fewer people, it would in fact mean more money going to the front line and less to big management structures, or obscure corporate entities. The ownership model we need for public services which build fully human support relationships is the locally-owned co-operative, not the multi-national. Achieving this would not only enable many more people to live well with the long term and lifelong conditions which are the NHS’ most intractable challenge, it would free people who joined the ‘caring’ professions but find themselves in uncaring organisations.

This blog draws on ideas in my book, A new health and care system: escaping the invisible asylum available from Policy Press and in a Kindle Edition.

Carry on doing the right thing

There have been another two ‘gig economy’ court cases. In the latest, Hermes was found to be employing delivery drivers it had tried to class as self-employed . Each time there is a case of this kind I get enquiries about the implications for Shared Lives, as Shared Lives carers are self-employed. On one level, there are no implications, because every court case so far has found companies not giving workers the rights, choices and autonomy of genuine self-employment, whereas the extensive legal advice we have taken has consistently found that, done properly, Shared Lives roles are self-employed, partly because people choose who to work with, and work from home with a high level of autonomy, rather than in tightly-prescribed or micro-managed roles.

Each of these court cases though, does reinforce the importance of following the national guidance on Shared Lives. Shared Lives organisations can’t have it both ways, as one or two have tried in the past: wanting all the value of what Shared Lives carers and their families bring, including the unpaid contributions people will make to someone’s life if they see them not as a ‘client’ or ‘customer’ but ‘one of the family’, but also wanting to manage Shared Lives carers more tightly than the role – and the law – allows. There is a reason Shared Lives carers are recruited so carefully over three to six months and then helped to find mutually compatible matches: it’s to ensure that the local organisation has a high degree of trust in them, knowing they have the right motivations to do the best for the person living or staying with them, not just ‘working to the contract’.

I wrote about this last year and came to the conclusion that whilst the law is complex (and each organisation must take its own expert advice), the best way to approach staying on the right side of employment regulations in Shared Lives is to keep things simple: recruit the right people then trust them and treat them fairly, in other words, do the right thing.

I’ve been on adventures and made new friends

Meg who spent five years in a mental health hospital, told an audience of MPs, Ministers and people involved in Shared Lives that we need to see people with mental ill health as “people with a future”, not as a risk or a case to be managed. Shared Lives was her route to feeling human again, “With the support of my clinician, I moved in with my Shared Lives carer in a new town. I was so scared, I didn’t know how to live in the community, but she taught me and she stood by my side. It’s been 22 months since I left hospital and I have achieved so much. I work three days a week, I run a self-harm support group in my town, I’ve been on adventures and made new friends. In January this year, I moved into my own house and my Shared Lives carer still supports me a few days a week.”

Meg’s journey from not being confident crossing a road to speaking in parliament was dramatic. Ali told us that she reads “all the inspirational stories about the amazing things that people in Shared Lives have achieved. And every time I think to myself ‘well me and Chris haven’t done anything like that’ and I feel like a bit of a fraud.” But Chris’ journey to living somewhere he could just be himself, after 19 years in residential care, is inspiring: “It was an excellent home. But there were staff. And there were residents. And there were lots of boundaries, and when Chris wanted to go for a drink in the pub he had to complete a risk assessment.”

“Well I’m not staff. I’m not even sure I am particularly a carer – I’m just me. And Chris is not a resident or a client or a service user, he’s just Chris. And we live together and learn from each other and drive each other mad and maybe, just maybe – though we’d both be far too embarrassed to admit it- we even love each other a tiny little bit.” Chris and Ali’s full speech is here. 

Meg asked us to think about all the most embarrassing things we’d ever done; the things we really regretted. And then to imagine they were all written down in a record we carried with us and had to show to every new person we met, with none of the good things we’d done included. That was what it was like to be within the system for her: never being able to grow beyond her past. Darren told us that he couldn’t remember much about his many years in nursing care: mainly just watching TV. Now he has a busy life with less medication, more exercise and activities, and most importantly, friends, in a household where he felt he fitted in.

We need services which care for people, but which think hard about all the impacts of that care, good and bad. As Ali put it, “I am learning all the time. In particular about how to tread that very fine line between ‘support’ and ‘control’ and how to just let Chris be himself.”

Our thanks to Liz Kendall MP for hosting our event, with speakers Norman Lamb MP and Kit Malthouse MP, all of whom pledged to help make sure our members are valued and celebrated as we try to bring Shared Lives to many more people.