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Latest learning disabilities mortality statistics make for grim reading

04 May 2018

The Learning Disabilities Mortality Review Annual Report 2017

View report

View Government response

The Learning Disabilities Mortality Review (LeDeR) programme was established to support local areas to review the deaths of people with learning disabilities, identify learning from those deaths, and take forward the learning into service improvement initiatives.

Kamran Mallick, Chief Executive of Disability Rights UK said:

“This review makes for grim reading but few surprises - if you’re learning disabled, you’re more likely to die much younger than your family, friends and neighbours who don’t happen to be learning disabled.

“The challenge remains to see a cultural shift in the way learning disabled people are treated so they get better support when it comes to health and social care.

“It’s hard to see how this will happen when the Department of Health and NHS England seem so disinterested in tackling the systemic discrimination that learning-disabled people face when it comes to getting the services they need.

“We’re tired of reports which set out the stark realities of living – and dying – if you have a learning disability in our society. We need to see some real action and real change, and commitment from politicians and organisations to drive the recommendations made in the report. It’s time to stop treating learning disabled people as third-class citizens.”

From 1st July 2016 to 30th November 2017, 1,311 deaths were notified to the LeDeR programme. The most frequent role of those notifying a death was Learning Disability Nurse (25%), most commonly working in a Community Learning Disabilities Team.

  • Just over half (57%) of the deaths were of males
  • Most people (96%) were single
  • Most people (93%) were of White ethnic background
  • Just over a quarter (27%) had mild learning disabilities; 33% had moderate learning disabilities; 29% severe learning disabilities; and 11% profound or multiple learning disabilities.
  • Approximately one in ten (9%) usually lived alone
  • Approximately one in ten (9%) had been in an out-of-area placement

The proportion of people with learning disabilities who died in hospital was greater (64%) than the proportion of hospital deaths in the general population (47%). Younger people with learning disabilities were more likely to die in hospital than were older people (76% of those under 24 years of age compared with 63% of those aged 65 and over); those with profound or multiple learning disabilities were more likely to die in hospital (71%) than other people with learning disabilities (59%).

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. People with profound or multiple disabilities had an average age of death of 41 years. Those with mild or moderate learning disabilities had an average age at death of 63 years.

The report makes the following recommendations:

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

  2. 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.

  3. 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).

  4. 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.

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

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

  7. 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.

  8. Local services strengthen their governance in relation to adherence to the MCA, 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.

  9. 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.

The Learning Disabilities Mortality Review Annual Report 2017