A new project will investigate why 63% of people with learning disabilities pass away before the age of 65 years compared to only 15% of the general population, many from unjust and avoidable deaths. 

Maudsley Learning and Estia Centre are leading the project and the results will be used to create and deliver an intervention to help tackle health inequalities for people with learning disabilities and/or autistic people.

This intervention will be trailed and evaluated in order to assess its effectiveness. The results aim to highlight, report on, and tackle any barriers and issues within the workforce that prevents best practice related to the The Learning from Deaths of People with a Learning Disability (LeDeR) review programme.

This is an annual report that details the deaths of people with learning disabilities over the age of four. It is part of the NHS Long Term Plan, which commits to continuing the LeDeR programme in order to improve the health and wellbeing of people with learning disabilities.

Investigate the challenges within healthcare resources

Maudsley Learning have received funding to develop a regional project for Southeast NHS services, namely:

  • Buckinghamshire, Oxfordshire and Berkshire West
  • Frimley Health
  • Hampshire and the Isle of Wight
  • Surrey Heartlands
  • Kent and Medway
  • Sussex Health and Care Partnership

The project will investigate the experiences, perspectives, and challenges within healthcare resources for people with learning disabilities and/or autistic people, related to LeDeR report findings.

This includes running a series of surveys, focus groups, and interviews with people with a learning disability and/or autistic people, their parents and carers, and the general and specialist healthcare workforce. As a collaborative process, the project involves people of all ages who have lived experience at every stage. This includes a steering group, and people with lived experience within the project team, allowing for contribution across the project in terms of its development, evaluation, and outputs.

The researchers are currently interested in hearing the voices of the specialist and/or general health and social care workforce from Southeast NHS Trusts.

If you are interested in taking part in the project, please complete this survey or contact aleks.saunders@slam.nhs.uk for further details.