Learning from lives and deaths of people with a learning disability and autistic people (LeDeR)
Research has shown that people with a learning disability and autistic people die earlier than the general public, and do not receive the same quality of care as people without a learning disability or who are not autistic.
In order to make changes, LeDeR reviews deaths to see where we can find areas of learning, ways to improve and areas where things are working well. This information is then used to improve services for people living with a learning disability and autistic people.
Annual reports give information about the lives and deaths of people with a learning disability whose deaths have been notified to LeDeR. They cover notifications to the programme in the previous year. Due to changes in the policy, LeDeR began reviewing the lives and deaths of autistic adults with no learning disability in January 2022.
20231019_LeDeR_action_from_learning_report_FINAL.pdf
How to report a death of someone with a learning disability or an autistic person
Anyone can use this online form to report the death of someone who was autistic and was over 18 year old, or had a learning disability and was over 4 years old.
Link to report a death on the LeDeR platform https://leder.nhs.uk/report
The national Learning Disabilities Mortality Review (LeDeR) programme was established in 2017 following the Confidential Enquiry into the premature Deaths of people with Learning Disabilities (CIPOLD).
Research has shown that on average, people with a learning disability and autistic people die earlier than the general public, and do not receive the same quality of care as people without a learning disability or who are not autistic.
The programme reviews the circumstances of deaths for all those from the age of four and over. It aims to:
- Improve health and care services for people with learning disabilities and autistic people.
- Stop people with learning disabilities and autistic people from dying too soon.
- Reduce health inequalities for people with a learning disability and autistic people