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Monday 20 January 2020
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BILD response to the Learning Disabilities Mortality Review (LeDeR)

The Learning Disabilities Mortality Review (LeDeR) report has been published today (4 May). BILD Health Advisor Jim Blair gives his thoughts on the findings:

Today’s publication graphically illustrates what needs to be done in relation to the health inequalities and preventable deaths of people with a learning disability.

The report highlights that the average age at death of people with learning disabilities was 59 for males and 56 for females. More than a quarter (28%) of deaths were of people aged under 50 years. National recommendations made based on completed local reviews of deaths in 2016-2017 are as follows:

  • Strengthen collaboration and information sharing, and effective communication between different care providers or agencies

  • Push forward the electronic integration (with appropriate security controls) of health and social care records to ensure that agencies can communicate effectively, and share relevant information in a timely way

  • Health Action Plans, developed as part of the Learning Disabilities Annual Health Check should be shared with relevant health and social care agencies involved in supporting the person (either with consent or following the appropriate Mental Capacity Act decision-making process)

  • All people with learning disabilities with two or more long-term conditions (related to either physical or mental health) should have a local, named health care coordinator

  • Providers should clearly identify people requiring the provision of reasonable adjustments, record the adjustments that are required, and regularly audit their provision

  • Mandatory learning disability awareness training should be provided to all staff, and be delivered in conjunction with people with learning disabilities and their families

  • There should be a national focus on pneumonia and sepsis in people with learning disabilities, to raise awareness about their prevention, identification and early treatment

  • Local services must strengthen their governance in relation to adherence to the Mental Capacity Act, and provide training and audit of compliance ‘on the ground’ so that professionals fully appreciate the requirements of the Act in relation to their own role

  • A strategic approach is required nationally for the training of those conducting mortality reviews or investigations, with a core module about the principles of undertaking reviews or investigations, and additional tailored modules for the different mortality review or investigation methodologies


All of these are vital but in order to enhance and save lives everyone working across health, education and care services must always:

  • Consider a physical or mental health reason behind a behaviour change and get it checked out

  • Tune into the person’s frequency understand how they are and what is happening thereby being able to provide support when required to ensure health needs are met

  • Understand that each person experiences pain differently

  • Ensure everyone over the age of 14 has an annual health check and has appropriate timely follow ups


Doing these things will save lives alongside effective education and training that is outcome focused and solution orientated with practical guidance. To ensure we get it right we must work with experts by living and lived experience to train, develop, evaluate and evolve staff and services.

BILD will be engaged in this through training materials, consultancy, PBS work, communities of practice and guidance creation.

Jim Blair
Jim Blair