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.

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The power of personalisation

The debate about the NHS can feel like a tussle between large state bureaucracies and the interests of big business. If we want a genuinely people-powered health system we need instead to start thinking big, about thinking small and personal. Read my blog for Nesta on the lessons for health from personalisation in social care here.

Social care at 70 is rediscovering its community roots

Here’s a blog I wrote for the Sustainable Health and Care Campaign with Rob Webster (CEO of South West Yorkshire Partnership NHS Foundation Trust and CEO Lead for West Yorkshire and Harrogate Health Care Partnership) and Glen Garrod (Executive Director of Adult Care and Community Wellbeing at Lincolnshire County Council and the President of the Association of Directors of Adult Social Services (ADASS))

We know that health inequalities persist across the country and stubbornly refuse to improve. Local NHS plans need to embrace the root causes of inequality – poverty, housing, education, employment, loneliness, and the environment all affect people’s health and the sustainability of communities. The results are most visible for NHS colleagues in a district or community psychiatric nurse’s caseload, the A&E and the GP surgery. Supporting people with comorbidity of social, mental and physical health needs should be the driver of the future health and care system. This will also mean creating the conditions for communities and community activists to be embraced in the solutions to bring greater control to people’s lives. This is central to making progress on health inequalities, not least because people in communities which experience health inequalities see them far more vividly than any outside expert can and community activists are often the most passionate about tackling them.

There is substantial and long standing evidence that a person’s life choices, where they live, and family support are critical to keeping them well. That link between place and wellbeing was at one time a key idea within social care. When Glen Garrod, now ADASS President, was a Community Service Volunteer in the early 1980s in Manchester, working at a youth centre and with local charities, he witnessed both the infamous Moss Side riots and how members of a tight-knit community would often help each other. Formal volunteering and informal ‘helping each other out’ were both powerful forces for good.

Approaches developed within the voluntary, community and social enterprise (VCSE) sector are increasingly recognised as a key bridge between the worlds of community, health and council services. In Shared Lives, people who need significant support are matched with a carefully recruited and trained Shared Lives carer. When a good match is found, the person moves in with their chosen Shared Lives carer, or visits them regularly for short breaks or day support. Shared Lives feels unique and personal to each household involved, but is also part of a CQC regulated national care sector. It was traditionally provided or commissioned by councils as a social care service for people with a disability and the elderly, but it is now being developed by NHS England and a growing band of clinical commissioning groups as a health service, helping people with mental ill health leave or stay out of hospital, for instance. People benefit from drawing on the informal support of a household and community, the regulated care provided under the auspices of a council or NHS contract, and a national VCSE network.

Imaginative areas are redefining the roles or services, of VCSE organisations and of civil society, in order to draw on all the resources available to them. For instance, it’s National Volunteers Week [at the time of writing this blog], yet many people who are actively involved in their communities would not consider themselves volunteers and social capital can be found in unlikely places. Athens, Greece has a daunting unemployment rate and over 2,000 derelict buildings in a country which has become synonymous with ‘austerity’. But it’s also where one man invented a new  [read more]

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.

A future for social care?

Here is my blog for Social Care Futures, the event and movement which will be based around a gathering in Manchester, alongside but independent of the annual National Children and Adults Services conference:

What do you do when the cause you are campaigning for fails to register with the public? When it is at best misunderstood or seen as one of life’s necessary evils and at worst seen as a permanent bad news generator, peppered with crises?

That’s the rather depressing problem facing campaigners for a better valued, better funded social care system. None of those public perceptions are fair. We can all quote stories of great social care, of lives being changed by sheer creativity, of inspirational compassion and, in my view, of some of the most radical transformation of any public service sector. But polls, focus groups and research agree: the public is still very hazy about what social care is, with those who do have an idea tending to believe it’s something provided free on the NHS. Social care is only guaranteed to make the news when it is being talked about as going bust, or when there has been an abuse scandal.

It was fascinating then, to be in a crowded room with the organisers and supporters of Social Care Future, the gathering planned to take place in parallel to the annual National Children and Adults Services conference in Manchester. We were hearing from The Frameworks Institute about their ground-breaking work with Joseph Rowntree Foundation (JRF) on reframing the issue of poverty and how to tackle it. The public has some well-worn and cliched ideas about poverty, including that it’s often do with people’s bad choices, including people who could work choosing not to, that there’s no such thing as ‘real’ poverty in the UK any more. Research shows that these are not true: poverty is real and can be desperate, people are born into and trapped in poverty, by low paid work and rising housing costs as much as worklessness, and so on. But messages about poverty as a problem, even a crisis, were not cutting through, even though they were based on real evidence, painstakingly gathered, because humans don’t easily change our deeply-felt beliefs through hearing facts, statistics or reasoned arguments. But reframing the issue of poverty has made a real difference to how JRF could get its research-based messages through to different audiences. The reframing process (set out here) includes appealing to people’s values, rather than relying on economic or other more abstract arguments: poverty ‘just isn’t right’ and shouldn’t be happening in a decent society. It also involved using some simple, visual images that make sense to people. In the case of poverty, JRF used ‘restricts and restraints’: poverty is rarely the result solely of bad choices: inequality and the hard end of our economy keeps hard-working people trapped in low incomes. They also used the idea of strong currents – the low wage, high housing cost economy, and life events like becoming disabled – which people cannot swim against however hard they try.

It was a compelling presentation about a successful campaign, whose messages could be found in previously indifferent or hostile papers. So what should we take from it for social care?

Firstly, that, whilst the crisis in social care is real and causing misery and suffering, if that is all the public hear about social care, it may not be motivating people and the politicians they elect to aim for change. In fact, a message that something is in permanent crisis, particularly when the public is unclear or ambivalent about it in the first place, may create a sense of hopelessness: nothing can fix it, so why throw good money after bad? That can’t be to say that stories about the crisis shouldn’t be told, but it suggests we also need a strong, consistent story about the good that social care does. We need to offer people solutions to the crisis – not just solutions to public service economic problems but also showing how social care is the solution to life events which any of us could experience ourselves or in our families.

There were two exciting and hopeful lessons from the session for me. One is that the flip side of the public not understanding and engaging with social care is that we – the social care sector – create and control a lot of the messages. We don’t have to compete with deeply, embedded or oft-repeated unhelpful messages, we just have to get our own messages right. Secondly, that we have all the elements that are needed to change people’s minds: social care is vital, is delivered by caring people and can transform lives. The vast majority would agree that supporting disabled and older people to live good lives is simply the right thing to do: we can appeal to that sense of fairness. And we have Continue reading

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.

 

Shared Lives Week is here

We’re celebrating the start of Shared Lives week, just as the Prime Minister announces a 70th birthday present for the NHS: £20 billion a year in extra funding by 2023. The NHS being 70 means that social care is 70 too: they were created at the same time, but social care’s birthday present looks likely to be continued cuts. The public – and therefore the politicians they elect – value what they can understand. We understand doctors and nurses healing or curing us, so we’re grateful for what they do.

Social care is still poorly understood and too often associated with things we don’t like the sound of, like living in a care home, or failures of care. Even within the context of social care’s low profile, Shared Lives is poorly understood. It’s much older than the NHS and social care, with roots going back hundreds of years. In the 14th Century, around the time when the first asylums were being built in the UK, in a small town called Geel in Belgium, a few people were instead opening their homes to people who needed their support. The act of sharing your home and family life is radical, even shocking in a world where we can feel we have less and less contact with each other, but it’s also deeply personal. It goes unnoticed except by the people who feel safe, settled and valued somewhere that feels like a home from home.

Much of what makes Shared Lives – and indeed Homeshare – special, is the unpaid contributions which people and families make to each other’s lives. But Shared Lives carers have to live and they are not volunteers, they are trained and paid as part of the UK’s highest-performing regulated care sector. We aren’t expecting £20 billion for Shared Lives. But we are calling for every area to value Shared Lives carers. Firstly, that means seeing and understanding what they do. We are inviting elected councillors and MPs to visit a Shared Lives household in their constituency to see for themselves what goes into making good lives when people need significant support. We have a Charter for Shared Lives and we want every area to use it as a model for their own local Charter, which sets out what local people can expect when they share their lives. And we are not ignoring money. I meet Shared Lives carers who have contributed vast amounts of their time, energy and lives to ensuring someone lives well, but who have not even been considered for a pay increase in over a decade. They do not feel valued in the way that they should, and we want every area to commit to including Shared Lives carers in their workforce development and pay reviews.

The NHS and social care are 70. Shared Lives isn’t far off 700. Isn’t it time we celebrated – and valued – those thousands of shared lives as they deserve?