Jodie is working to join forces with other self-advocacy hubs from around the country to together come up with a list of demands to change the way health works for people with learning disabilities. They have agreed demands for Government and are planning actions to make their case. It is the first time a co-ordinated national set of demands led and voiced by people with learning disabilities has emerged.

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. It could mean being able to travel independently, or being in charge of their own care.

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.

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

Throughout history, social change in health has been driven by passionate people coming together to fight for their rights and forge new ways of thinking. In recent years, funders, policymakers and the NHS have been trying to support some of these movements. This isn’t always easy; grassroots movements often lack formal structures, they are complex, they change quickly.

At Nesta, we believe that people are experts in their own health and the health of their communities. Social movements present a powerful opportunity for citizens and practitioners to come together to put the needs of people at the heart of health and care. That’s why we’re running the Social Movements for Health programme Dunhill Medical Trust.

The self-advocacy movement is one of the seven social movements being supported by the Social Movements for Health programme. Some of these social movements are focused on a particular geographical area, others are seeking to support a community which itself is spread across the country. Others are led by clinicians who are frustrated at the way in which health services do things to patients and not with them.

Go back to the full list of Impact stories: health