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LeDeR 2018 annual report indicates ongoing concerns over deaths

Press release issued: 21 May 2019

Findings published today in the Learning Disabilities Mortality Review (LeDeR) Programme’s 2018 annual report indicate ongoing concerns about the premature deaths of people with learning disabilities.

The University of Bristol analyses the findings from completed reviews of deaths and publishes these in its annual reports. This report details that policies relating to the care and support of people with learning disabilities still require strengthening. The report has 12 recommendations.

This is the third annual report of the LeDeR programme, which is the first national programme of its kind in the world. Between 1st July 2016 and 31st December 2018, 4,302 deaths were notified to the programme.

These are some of the report’s key findings:

  • By 31st December 2018, 25% (1,081) of deaths notified had been reviewed by local areas in England.
  • Adults with learning disabilities from Black, Asian and Minority Ethnic (BAME) groups appear to be under-represented in notifications of deaths.
  • Just under half of the reviews completed in 2018 reported that the person had received care which met, or exceeded, good practice.
  • One in ten (11%) of reviews completed in 2018 reported that concerns had been raised about the circumstances leading to a person’s death.
  • 71 adults (8%) were reported to have received care that fell so far below expected good practice that it either significantly impacted on their well-being, or directly contributed to their death.
  • Women with learning disabilities died 27 years earlier; men 23 years, when compared to the general population.
  • Pneumonia, or aspiration pneumonia, were identified as causes of death in 41% of reviews - conditions which are potentially treatable, if caught in time.
  • There was evidence of bias in the care of people with learning disabilities, resulting in unequal treatment.

Professor Pauline Heslop, University of Bristol’s LeDeR programme lead, said:

“This annual report is about people who have died - we must never lose sight of this. They were people who mattered.

“Nearly half of the deaths reviewed showed that people with learning disabilities received care that met, or exceeded, good practice, but we should expect all people to receive care that meets good practice. The findings suggest we still have a long way to go for people with learning disabilities.

“One in every 10 reviews completed in 2018 raised concerns about the circumstances leading to death, and 71 adults were reported to have received care that fell so short of good practice that it significantly impacted on their well-being, or directly contributed to their cause of death. This is completely unacceptable. We need to see clear actions being taken to prevent other premature deaths.

“Of particular concern was the identification of diagnostic over-shadowing – or misreading symptoms of illness as being due to a person having learning disabilities, rather than a treatable medical condition. This can be symptomatic of a lack of understanding, or a disregard for people with learning disabilities; an attitude that devalues their lives, makes ill-founded assumptions about their quality of life, and perpetuates heath and other inequalities. It is overcoming such societal, discriminatory attitudes that is arguably our most significant challenge.

 “The LeDeR programme is now entering its fifth year. Taking action to make the required improvements in the health and social care for people with learning disabilities is everyone’s responsibility and must be accompanied by an enhanced degree of urgency.”

Download 2018 Annual Report: LeDeR 2018 Annual Report (May 2019) (PDF, 3,249kB)

Download easy-read version: LeDeR 2018 easy-read Annual Report (May 2019) (PDF, 1,914kB)

Image: Picture of Professor Pauline Heslop available to download here.

Video: Families talking about the importance of LeDeR reviews available here.

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