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Ella lives in a mean and cramped house on a run-down estate - there are no shops, the pub closed years ago, the playground is desolate and never used. Inside Ella’s house the tension is palpable and the noise levels deafening. The TV is on at full volume, Ella’s older son is fighting with one of her daughters, another keeps up a constant stream of abuse from the kitchen. The dogs are locked behind a bedroom door.
Ella is stuck - she has lived with crisis for forty years - she knows nothing else and she knows no way out. Abused by her father, she has since lived with four abusive partners of her own. One of her children has been removed by social services and the three who remain with her suffer from a range of problems. None are in full-time education or working. Ella, rather like the welfare state she knows so well, desperately needs a radical plan to build a way out so her children do not repeat the cycle, as she is repeating her own mother’s history. It is only a matter of time before grandchildren appear - whether they can expect a different future is the real question we might ask of welfare reform.
Members of the Participle team have spent time living alongside Ella and other families like hers over the last two years because we are interested in what we can learn from the places where the need is greatest, and where the welfare state in its current form seems most challenged. We have found again and again that if we can design solutions that work with those most in need, we can create solutions that will work for many.
Ella’s family and the many others like hers are a manifestation of the breakdown between the state and the citizen. The constant visits and delivery of messages do not constitute a conversation, and the families do not feel properly listened to or understood. Asked to change, the families have no lived experience of what this might feel like; and, worse still, they know that these commands are accompanied by the dead weight of expectation that they can’t change - ‘this family will never change’, it was explained to us.
To read our approach on how to support Ella's families, read more here.
In conversation with Charles Leadbeater was Geoff Wedgwood, Programme Director for digital health care; Luke Bretherton, Senior Lecturer in theology and politics, Kings College London; Peter Gibson, technology entrepreneur; Peter Greengross, Medical Director, The Learning Clinic; Matthew Taylor, Chief Executive of the RSA; Conor Burke, Director of Commissioning for GP cluster in North East London; Jenny Hyatt, founder of The Big White Wall; Nigel Hartley, Director of Supportive Care at St. Christopher’s Hospice; Lara Carmona, Head of Strategy and Policy at Marie Curie Cancer Care.
Before we met we asked people to consider:
To what extent can we de-medicalise our approach to long-term conditions?
What would happen if we came at this through a purely social lens?
What would be the biggest opportunities and challenges, and to where might we look for solutions?”
As it was the conversation ranged widely and covered both how we might support social functions that lead to better medical outcomes, and whether we should consider social health as worth pursuing for its own sake. Below are just a few thoughts and comments that start to point the way towards a new approach to social health.
1 How to support changes in behaviour
If living well means changing how we live, how should we support people to change their behaviour?
Peter Gibson suggested that we encourage people to monitor aspects of their health that they are interested in, collect that data and represent it visually to help people make their own decisions about what they’d like to work on. He also shared his experience that much of the best evidence shows that the best way to change behaviour is to build on how people already act.
We could create or influence a culture so that it would be supportive of self-reflection and openness. Jenny’s experience with the Big White Wall has shown that creating the right (online) environment is a crucial factor in behaviour change.
Matthew suggested that the best approach is to support people to engage as citizens where they live. Active and critical engagement in civic activities may be an important component of social health in itself. The process also ensures services are created in partnership with the people that receive them. The RSA’s work with drug and alcohol users supports this approach.
2 A big conversation?
But does this necessitate having a ‘big conversation’ with people and organisations about what social health is and what their roles in it should be?
As Conor pointed out, we need to define at what levels our goals operate. Is social health a political, economic or personal challenge? We might need to have several, parallel ‘big conversations’ if the change is to incorporate all of these levels, as it appears to need to.
At the level of ordinary people’s lives, the people we met in our user research did often appear to be lacking an overarching narrative that could otherwise bring people together around social health. We could undertake a large ‘listening exercise’ to find out what people think and work to align interests. But the question is, do we need to do that? Perhaps it is better to engage people on a level that is already relevant to them and then build civic participation on top of this.
The idea of a local community may also be a convenient fiction. It may be that the way we use the word local is actually a placeholder for shared interests, understanding and relationships. In fact none of these may exist strongly in a local area. Luke advocated an approach that would involve working to build and rebuild local communities. Jenny’s work suggests that online networks provide a good option for non-local communities that are united by a common interest.
In asking people to engage in social health, are we in danger of telling people how to live?
Opinion was divided on this. One half of the table felt it is a shame that we can’t tell people what would be best for them while the other half felt that telling people what to do doesn’t work anyway. The following suggestions might point the way forward.
Creating space for people to be open, explore and be critical is a powerful method to help people make changes in the way they want to in Jenny’s experience. Separately, Nigel has found that providing a menu of options is a useful way of opening a conversation since people often don’t know what they want or what is possible.
As well as those things, we might also have to support people to develop new narratives about who has the capacity to influence their health, in order for people not to automatically look outside of themselves and their communities for a paternalistic service.
4 Over-reliance on professionals
There was a consensus around the table that we need to find ways to move away from over-dependence on professionals.
In Nigel’s opinion some of the people in the hospice expect doctors to solve all their problems of social agency and he sees this as indicative of the wider over reliance on medical professionals.
Luke described the mission creep of a health system that is perceived as value-neutral; that people are looking for relationships and reassurance, which the health service is not designed to provide, but ends up trying to anyway. Matthew pointed out that since the health system is designed around interventions for sick people there are incentives built in for people to play a sick role in order to receive care and attention.
In Jenny’s work, experienced therapists working in a new public way on the Big White Wall decided they needed new training to cope with a new set of social dynamics. This hints at how a move to a social model of health could alter the relationships between people and professionals and open up new forms of interaction.
In moving forward we could work to support people and professionals to redefine their narratives. Another support we could provide people with to help them take control over their health is digestible, real-time, useable information, as Think Banking does with finance.
5 Social death
Throughout the conversation there was a link made between social and medical health that can’t be ignored.
In one direction, Nigel talked about hospice patients experiencing ‘social death’ after having a terminal diagnosis that meant not wanting to see people, not knowing how to talk to others and their friends cutting them off. We suspect that this occurs in other cases of ill-health, outside of terminal diagnoses causing a sort of loss of social flow.
In the other direction, Peter Greengloss told us that that prescription of anti-depressants is the strongest predictor of future emergency hospital admissions. Spiraling debt is also known to impact badly on medical health.
Social ill-health and medical ill-health have a mutually reinforcing effect on each other that the current system is not well placed to deal with. We could work to help people to support each other through ill-health. We could also support people to develop social resistance to prompts that lead them into unhealthy behaviour, such as advertising of high interest credit cards and loans.
6 The model
There was agreement that whatever we do to improve social health, the starting point should be outside of the current system as it is framed now. Alongside this we now have a set of further questions that can guide the development of an organisation for social health:
Can social health ever be some kind of business without leaving out important social and civic dimensions?
Will people pay, or will the state?
Will big business be interested in aligning their models with people’s best interests?
What other resources might we be able to unlock?
We turned to some of these points in our next lunch conversational in the series: ‘Collectivising Health’, hosted by Robin Murray. Click here to read a summary of that conversation.
There were many, many more interesting points and we’re in the process of digesting them all, ready to create something new later this year. So a big thank you to everyone who took part in this discussion!
Our employability work included a dedicated piece of research on networks and you can download some of the visualisations we developed here.
We wanted to share a little of where we’re up to in thinking about the connection between networks and employability, so below are a few observations and ideas that we’ve been exploring along the way.
1 Networks are limited
People’s networks shrink at a surprising rate from the point when they become unemployed. People cut themselves off, and are cut off quickly through social shame and not being able to participate in what were perceived as normal activities. Routines change and separate people from their working peers. Simultaneously, people’s networks shrink, as they get older, as do their opportunities for meeting new people.
2 Networking is alien
Most people we met did not have an intuitive understanding of how they might access opportunities for work or self-development through their networks. When prompted some people could think of who they might go to for particular things, but for most people there were specific network functions which could be supportive of employability that were missing. The longer people had been out of work, the less likely they were to see their networks in terms of opportunities.
3 Networks can be built to enhance employability
We met inspiring people who were doing just that. One mother we met was also doing this on behalf of her school age son, explicitly so that he would be connected to good opportunities when he left education. In sharp contrast, for one of the people we met, networking meant cutting off negative connections that kept dragging him back into crime, so social capital isn’t all useful. In general, very few people had ever thought of, let alone tried to, actively build and shape their networks in order to thrive.
Vouching emerged as a key concept from the networks research. Most of the people we met who had positive experiences of finding, changing or exploring work had had someone vouching for them. People don’t vouch for people that they have never met, but in the cases we saw, it doesn’t take much for someone to feel confident enough to make a recommendation. People furthest from work usually had the fewest people who would be able to vouch for them in something they wanted to do.
5 Employed and unemployed don’t mix
Of the people we met, those who were unemployed mostly had unemployed people in their networks, while those who were employed knew mostly employed people. As a result, most work related opportunities are accessible only to people who are already employed. The current system conducts activities that group unemployed people together compounding this. At the same time the unemployed people we met were very suspicious of other people’s reasons for being out of work. There is little sense of community and unemployed people often fall back on family groups, increasing their distance from work.
Participle's Get Together work is now showing as part of this exhibition at the Cooper-Hewitt National Design Museum in New York.
See the full article here