Developing a radical new approach for designing services with people with learning disabilities and autistic people in London Heart n Soul

Health care services can be difficult for people to navigate; they are even more confusing and overwhelming for people with learning disabilities and autistic people with and without learning disabilities (PWLDA). They often feel invisible, overlooked and unheard; many have negative experiences of health care, and very low expectations of their needs being met.

Discrimination and stigma means that PWLDA’s health needs may not be assessed and treated adequately, and a lack of ‘whole person’ approaches can mean that some health care professionals don’t see real health problems, and only see the disability or stereotypes relating to it.

These issues have been compounded by COVID-19. Recent statistics show that PWLDA have up to four times greater risk of death from COVID-19 than the general population.

This project is aiming to improve health care services through co-design processes. While the COVID-19 pandemic has exacerbated health inequalities, it also offers an opportunity to be more ambitious, to re-contexualise relationships between PWLDA and health and social care professionals, and radically reimagine services.

Over two years, a range of activities will look to improve quality of listening, creating space in which PWLDA and professionals can share experiences and decision-making, empower action around service redesign, and develop new ways of learning together.

The project leads believe that PWLDA can thrive when they are at the heart of designing health care services.

Evidence will be captured and shared, through web and audiovisual updates, the development of a comic book, and delivering video or radio events for professionals.

Contact information

For more information about this project, please contact Mark Williams, Heart n Soul.