Learning from lives and deaths – people with a learning disability and autistic people, or LeDeR (formerly known as the Learning from Deaths Review Programme), started in April 2017 with the Borough of Kingston Upon Thames being one of the original pilot sites.
LeDeR was set up to look at why people with a learning disability were dying at a younger age compared to the rest of the general population. The findings are used tp help make changes locally and nationally to improve the health of people with a learning disability and reduce health inequalities.
By finding out more about why people are dying prematurely we can understand what needs to be changed to make a difference to people’s lives.
What happens in a LeDeR review?
In a LeDeR review someone who is trained to carry out reviews, usually someone from a professional background such as a social worker or learning disability nurse, will review all information relating to the person who has died, including all health and social care interventions and support leading up to the persons death.
This review will identify issues that either made a positive difference to that persons life and end of life care or where health and social care did not go well for the person and impacted on their end of life.
Reviews usually highlight areas for improvement in services for people with a learning disability or recognise areas of good practice. This information is then used to help services and commissioners improve services and promote examples of good practice.
Reviewers normally consult with families and carers of the person who has died to inform the review, as well as consulting medical records from GPs, community and acute health trusts, and local authorities.
In 2021, NHS England/Improvement made changes to the LeDeR system and published a new policy and procedure for all new Integrated Care Services to follow. This new policy and procedure sets out for the first time the core aims and values of the LeDeR programme and the expectations of different parts of the health and social care system delivering the programme which also introduced the inclusion of autism for the first time.
Read the policy from NHS England
Local LeDeR steering group
Within each brough across South West London there is a designated local area contact (LAC) for the LeDeR programme. The LACs chair a local steering group which studies the reviews, agrees actions and reports back to the directors of quality in the South West London Integrated Care System, commissioners and the regional LeDeR programme.
This steering group includes membership from:
- representatives for people with a learning disability
- family, carer and advocates
- local authority adults social care
- LeDeR reviewers
- service managers from learning disability care and support agencies
- community, acute and mental health services
- child death overview panel
LeDeR resources
Reports
Annual reports
Annual reports from the LeDeR programme
Annual reports from NHS South West London Clinical Commissioning Group
Action from learning reports and case studies
NHS England action from LeDeR learning report (including full and easy read versions) – May 2019
NHS England LeDeR – Action from learning report – July 2020
NHS England action from learning report – July 2020
NHS England action from learning case studies – June 2020
Independent reports
Summary of findings 50 LeDeR reviews of deaths related to COVID 19