The Learning Disability Mortality Review (LeDeR) Programme
The Learning from Lives and Deaths – People with a Learning Disability and Autistic People (LeDeR) programme supports local areas to review the deaths of people with learning disabilities or with an autism diagnosis.
Health outcomes and life expectancy for these people are worse and the reviews allows local areas to look at what happened and to make improvements.
Autism Independence has been involved in the LeDeR programme since 2019 when Nura Aabe, CEO, contributed to a film project.
The project aim was to raise awareness of LeDeR reviews and the importance of people with lived experience contributing to the programme.
What is a LeDeR review?
A LeDeR review looks at the death of each person with a learning disability or an autism diagnosis from the age of four onwards. It looks at what went well in the person’s care and what could have been better. The review may look at recent events leading to the person’s death. It may also go back further to when they were young.
The purpose of a review is to improve the health and lives of people with a learning disability or with an autism diagnosis, and to improve service provision for other people.
The process is independent. This means that the reviewer is not someone from the service where the person has died or someone who has been personally involved in their care.
Families of the person who died are invited to take part in the review. They know the person who has died the best and their contribution is a vital part of the LeDeR review.
What happens after a review has taken place?
The review will share good practice and it will also give recommendations for improvements. For example, the review could pick up that the person who died was not having their annual health checks.
These findings will be shared nationally to make sure other services across the country can benefit from the lessons learned and implement changes.
LeDeR and people from ethnic minorities
In the LeDeR Annual Report for 2023/24 for Bristol, North Somerset and South Gloucestershire, 75 deaths were reported and of those three were from ethnic minorities. This figure is very low.
It is important for more families from ethnic minorities to share their experiences when their loved one has died. There could be different lessons to be learned from these.
Autism Independence can help families with this process if they would like to get involved. They can send an email to [email protected] or call 07354 486 322.
Further information
More information can be found about the LeDeR programme through the Bristol, North Somerset and South Gloucestershire Integrated Care Board, including links to their annual report:
Learning Disabilities Mortality Review (LeDeR) Annual Report 2023 to 2024
Learning Disabilities Mortality Review (LeDeR) Annual Report 2023 to 2024 – Easy Read Version