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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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.

 

The personal is political

My social media timelines are full of two very contrasting sets of stories today: the stories about people coming together, as Shared Lives organisations celebrate Shared Lives week, and images of distraught children being taken off their parents at the US border. There could hardly be a starker contrast: our capacity to unite and to divide.

People who choose to share their lives with people to whom they have no legal or family obligation are doing something both natural and radical. They are making a choice to build their whole lives around the idea of bringing people together. They send us a powerful message: one which feels more important now than ever, so we are fortunate to be able to take their messages into parliament tomorrow, for our annual parliamentary reception. It is a truly cross-party event, this year hosted by Liz Kendall MP, last year by Alistair Burt MP. Norman Lamb MP will be speaking alongside Kit Malthouse MP. We’re going on a day when politicians will once again be debating Brexit and bitter divides will be laid bare. Our stories of people supporting each other to live life to the full could be seen as light relief by the parliamentarians, but I hope they feel the power of those stories, their radicalism and how much we need people who bring people together right now.

The choices that our members make are very personal, but as feminist Carol Hanisch said in 1970, “the personal is political”. So this year, we are celebrating the personal stories of Shared Lives as usual, but also calling on politicians of all parties, locally and nationally, to value Shared Lives carers, ensuring they have the training, back-up and fair pay they need to carry on making their very personal contributions to the future of our health and care system, and to building stronger communities and a more unified society in these divided times.

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?

Feeling settled

The Children’s Commissioner reports today that : “We estimate 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.” (via BBC article here) 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.”

We are cautious about making comparisons between foster care and Shared Lives, despite some obvious similarities in how they are organised, because Shared Lives is not about treating adults like children, and fostering is associated in people’s minds with family breakdown, whereas Shared Lives is something that adults choose when they are looking for the mix of independence and support which most of us look for when we form a family or a household as an adult, and it is very often about two families working together.

But I was struck by the contrast between that high level of instability in children’s lives, at a time when stability is so vital, and the tendency of Shared Lives arrangements to last for years. I recently met a young woman who had had around 30 foster or children’s home placements as a child, but who was thankfully settled in her Shared Lives household as a young adult. I’ve never come across someone using Shared Lives who has had more than a handful of Shared Lives arrangements over a period of years, and I meet many who have lived in the same household for decades.

There is often an emergency, unplanned aspect to fostering, which will be one factor at play, but that cannot explain children who have been moved multiple times. I wonder how much the strong focus on matching – both parties choosing to live together – plays in the relative stability of Shared Lives, and whether there is a debate to be had about matching within fostering, where there is a greater focus on professionalisation and avoiding attachments that might not be maintained. I’d be interested to hear from people much more knowledgeable about children’s support than I am on that.

Ironically, stability in the adult support sector is not always seen as a good thing. Whilst it is recognised that someone whose support arrangements are constantly breaking down is not happy (and that those crises are very difficult and expensive to manage), being ‘too’ settled is also sometimes frowned upon by service managers. I hear regularly that people who are happily settled in a Shared Lives household are constantly being considered for moving on to ‘greater independence’, even if living by themselves is not what they are looking for at that stage of life (how many of us dream of always living alone?) Sometimes that unwanted move uproots them from the support networks they have built up and they wind up in the revolving door of failed support arrangements.

In both children’s and adults’ services, there is constant churn and movement, whether it is children being moved multiple times during an already troubled childhood, or adults getting intimate personal care from a succession of strangers on a staff rota. Whereas in ‘ordinary’ life, most of us crave some kind of attachment, mutual dependency and feeling settled. As in so many things, services could learn a great deal from ordinary family life, if only we had the humility.

‘Sarah is part of my family’

You can now watch our new film about how people with mental ill health use Shared Lives to recover:  two minute version and seven minute version. 

mental health film

Meanwhile, The Guardian shared some great Shared Lives stories in its feature on becoming a Shared Lives carer: 

One Shared Lives carer said of the woman with autism who came to live with her: “She didn’t want to leave the house and she didn’t really speak. Now she’s becoming much more independent, she walks everywhere and is always out and about.”

In Stafford, Chris Goodall was part of the Shared Lives and offenders scheme. An 18-year-old with a learning disability came to live with him after being released from youth custody, instead of going into an adult prison. “This was of course a better option for him,” Goodall says. “For the first three months, he was tagged and had an asbo and a curfew. But he stuck to it and the tag came off in due course. We got him a place at the nearby college and he received a certificate for 100% attendance in the first year.”