People Taking the Lead

Damian Hebron and Sophie Kendall, Programme Managers in Nesta’s Health Lab.

At Nesta, we want to see a health and care system that supports people to lead healthier and happier lives. We believe that people are experts in their own health and the health of their communities.

Damian Hebron

In a time of change, people are increasingly demanding that health and care systems work more closely with communities and offer more personalised and equitable approaches to health. Dramatic social change has been driven time and again by people coming together in social movements to fight for their rights, solve problems and shift how people think, support each other and demand what they need. We believe there is untapped potential to combine the energy and dynamism of social movements with the need for radical institutional change. The structure of health and care services often work against the needs of marginalised groups of people. Over the period 2019-20 we have been working with social movements to learn how to effectively support people powered change in health services.

One of these movements is Self Advocacy Together. Self advocacy is about people with learning disabilities being in control of their own lives. This means speaking up about what they want and being listened to. It means being able to choose things for themselves.

In recent years, the need for a national self advocacy body has become very clear: the abuse at Whorlton Hall exposed by BBC Panorama showed the need for people with learning disabilities to have more say in how care is provided. Statistics continue to show that people with learning disabilities get worse health care and die younger than the rest of the population.

Sophie Kendall

But a movement is growing. Five self advocacy hubs from around England have been working together with Learning Disability England to build a strategy and work out key demands for people with learning disabilities. They want an end to Assessment and Treatment Units (where people are kept living in institutions); people with learning disabilities to be paid to provide their expertise and advice; and for self-advocacy hubs to develop in every part of England.

We think this social movement is a sign of things to come. Among the other movements taking part in our programme are care workers collaborating to make the case for improved working conditions in the sector; people with lived experience of mental distress working with social workers and other professionals to shift systems to adopt social approaches to mental health; and medical students pushing for a shift in the medical curriculum towards social prescribing. These grassroots, people powered movements harness the energy and anger many feel about services which do things ‘to’ people, not ‘with’ them.

Beyond our own social movements programme we are joining others to campaign for people powered change. One of these is #socialcarefuture, a growing movement of people who are imagining, communicating and creating together a future where what we currently call social care makes a major contribution to everyone’s wellbeing and which, as a result, will enjoy high levels of public – and hence political – support. The vision of the future they are championing is one that can be realised through the connection of grassroots activists with decision-takers and policy-makers and is a vision we think we can all agree on:

“We all want to live in the place we call home with the people and things that we love, in communities where we look out for one another, doing the things that matter to us and that we’re good at.”


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