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4th annual report of The Learning Disabilities Mortality Review Programme (LeDeR) published

The DSA will be closely following how the Department of Health and Social Care responds to the recommendations made in the 4th annual report of The Learning Disabilities Mortality Review Programme, published yesterday (16 July 2020).

The LeDeR programme, established in 2015, aims to reduce early deaths and health inequalities for people with a learning disability and to ensure that any learning from these deaths leads to improved health and care services.

It is a welcome development that a greater proportion of deaths reviewed in 2019 (56%) reported that the person had received care that met or exceeded good practice, compared with deaths reviewed in 2018 (48%).

However, it is of great concern to us that the latest data shows the age at death for people with a learning disability was 22 years younger for males and 27 years younger for females than in the general population.

We will be calling for immediate implementation of the recommendations to improve the care of people with a learning disability.

Recommendations from the report include:


  • A continued focus on the deaths of adults and children from black, Asian and minority ethnic groups.
  • For the Chief Coroner to identify why the proportion of deaths of people with learning disabilities referred to a coroner in England and Wales is lower than in the general population.
  • Greater focus on the best practice in care coordination for people with a learning disability and  an evaluation different models of care coordination for adults and children with learning disabilities.
  • Developing, piloting and introducing:
    • specialist physicians for people with learning disabilities who would work within the specialist multi-disciplinary teams;
    • a Diploma in Learning Disabilities Medicine; and
      making ‘learning disabilities’ a physician speciality of the Royal College of Physicians.
  • Evidence-based guidance for the prevention, diagnosis and management of aspiration pneumonia.
  • Guidance on the safety of people with epilepsy, and safety measures to be verified in Care Quality Commission inspections.
  • An audit of adults and children admitted to hospital for a condition related to chronic constipation.

The report also highlighted  inappropriate use of Do Not Attempt Cardio-Pulmonary Resuscitation notices. These should never be used in a blanket way and this has been reiterated during the Covid-19 crisis.

You can read the full report here.

You can read more about the DSA’s Health Alert campaign here.