LeDeR – Learning from lives and deaths

LeDeR – Learning from lives and deaths People with a learning disability and autistic people

The LeDeR programme was established by NHS England in 2015. This was in response to the recommendations of CIPOLD in 2013. CIPOLD is the Confidential Inquiry into premature deaths of people with learning disabilities.

People with a learning disability often have poorer physical and mental health than other people. They may also face difficulties in using health and care services. CIPOLD found that 38% of people with a learning disability died from an avoidable cause. When compared to a similar population of people without a learning disability, the figure is 9%.

What does LeDeR do?

The LeDeR programme has supported Clinical Commissioning Groups (CCGs) across England to:

  • review the deaths of people with a learning disability,
  • to learn from those deaths, and
  • to put that learning into practice.

CCGs are responsible to improve the quality of services provided to people with a learning disability. They must also take action to deal with ongoing differences in health conditions.

The national LeDeR programme also collects and shares information* about the deaths of people with learning disabilities. This helps identify common themes, learning points and recommendations. They help in making improvements in policy and practice.
*NOTE – Any personal information that could be used to identify any person is removed from the data before it is shared.

From January 2022 the programme includes the deaths of adults with autism.

The LeDeR programme has an additional focus on the lives and deaths of people with learning disabilities and autism from Black, Asian and Minority Ethnic communities. This is due to:

  • high underreporting of deaths,
  • a large difference in the age of death, and
  • death at a much younger age.

In July 2022, the responsibility for LeDeR will transfer from CCGs to Integrated Care Systems. You can read the national LeDeR policy which provides more information.

Who is responsible for it in Manchester?

Each CCG has a Local Area Contact who ensures that the LeDeR programme is available to everyone. In Manchester, the Local Area Contact is the MHCC Associate Director of Nursing with the Lead Nurse acting as the secondary contact. You can contact them by email at mhcc.nursingteam@nhs.net.

Other important information

  • LeDeR Steering Group

    Each CCG must have a LeDeR Steering Group. In Manchester, the Steering Group is chaired by the Associate Director of Nursing. The group has members from across the Manchester health and care system and meets bimonthly. It provides oversight of the reviews, the learning that comes from them and the plan for service improvements.

  • The Learning Disability and Autism Good Health Group

    The aim of this group is to lead and support improvements to health and care services. Its work is based on the LeDeR service improvement plan. The group is attended by members from across the health and care system and meets monthly.

  • Reporting deaths

    The deaths of people with a learning disability (aged 4 and above) and the deaths of autistic adults can be reported here on the LeDeR NHS website.