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The Lived Experience Alliance

DR UK is now part of the Health and Wellbeing Alliance (HWA) working with NHS England, Department of Health and Public Health England. As part of this we coordinate the user-led Lived Experience Alliance – disabled people leading change (LEA)


The LEA is a consortium which includes Disability Rights UK, Shaping Our Lives, CHANGE and the National Survivor and User Network (NSUN). 

We are led by disabled people and bring tested methods to build up, gather and feed the direct and collective voice of our lived experience into (co-produced) projects with other equality groups. 

We have been selected for our reach, credibility and impact gained with many small local user-led organisations and self-advocacy projects building on the principles of the social model, self-care and leadership of disabled people directing care and support for and by themselves.

Examples of our user-led work are in accessibility and co-production leading to user-driven commissioning, peer-led modelling and the co-delivery of the Workforce Disability Equality Standard.

The much wider partnership of the Health and Wellbeing Alliance is intended to help DH, Public Health England and NHS England work closely with VCSE organisations to promote equality, address health inequalities and help families and communities achieve and maintain wellbeing.

The VCSE Health and Wellbeing programme's objectives are to:

  • Encourage co-production in the creation of person-centred, community-based health and care which promotes equality for all
  • Enable the voice of people with lived experience and those experiencing health inequalities to inform national policy making and shape the delivery of services
  • Build evidence of sustainable, scalable solutions to mitigate and prevent inequalities impacting on health and wellbeing of communities

By being part of this alliance, DR UK can amplify the voices of our members and networks at national and strategic levels. It means that real issues affecting local communities across England are raised and (hopefully) positive local solutions sought together.

As user-led WWA we hope to see our impact in policy and practice leading to further improvements around choice, control and independent living across all our life domains, including at work (eg in the NHS). These may seem a soft focus compared to seemingly much more urgent policy areas such as cancer, ‘out of hospital’ care. In fact, co-production is part of the answer to all such urgent policy areas – not a simple add-on. Services and support should be redesigned so that they matter to disabled people (who account for 70% of NHS expenditure).

Disability is NOT a characteristic but a situation we find ourselves in - avoiding the word 'disability’ does not end it. So let us all take a holistic and Pan-impairment approach so we can play a greater part in our services and in peer support and we all win. 

For any comments and/or ideas about how to strengthen ‘disabled people leading change’, please get in touch with us via LEA@disabilityrightsuk.org

For more on our Lived Experience Alliance policy work see our briefings and submissions and reports and research pages

Useful resources

My NHS Database

NHS Patient Online