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BAME children with learning disabilities dying at ‘disproportionately’ younger ages

Learning Disabilities Mortality Review's annual report recommends continued focus on deaths in BAME groups
Picture shows a boy playing with toys

Learning Disabilities Mortality Review's annual report recommends continued focus on deaths in BAME groups after highlighting disproportionately younger deaths

Children with learning disabilities from black, Asian and minority ethnic (BAME) groups are dying at disproportionately younger ages, according to a national review.

The latest annual report from the Learning Disabilities Mortality Review (LeDeR) programme shows that of those who died in childhood (ages 4-17), 43% were from BAME groups.

Overall, 7% of the deaths notified to LeDeR were of children aged 4-17. In the general population, just 0.3% die between the ages of five and 19.

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Learning Disabilities Mortality Review's annual report recommends continued focus on deaths in BAME groups after highlighting disproportionately younger deaths

Picture shows a boy playing with toys. Children with learning disabilities from black, Asian and minority ethnic (BAME) groups are dying at disproportionately younger ages, according to a national review
Picture: iStock

Children with learning disabilities from black, Asian and minority ethnic (BAME) groups are dying at disproportionately younger ages, according to a national review.

The latest annual report from the Learning Disabilities Mortality Review (LeDeR) programme shows that of those who died in childhood (ages 4-17), 43% were from BAME groups.

Overall, 7% of the deaths notified to LeDeR were of children aged 4-17. In the general population, just 0.3% die between the ages of five and 19.

Over one quarter (29%) of those aged 18-24 who died were from BAME groups and 37% of them had profound and multiple learning disabilities.

The review recommended a ‘continued focus on the deaths of all adults and children from BAME groups’.

Timely insight into equalities that BAME communities experience

RCN learning disability nursing forum chair, chief enablement officer and nurse consultant Jonathan Beebee said: ‘This year’s report shows a very timely insight into the inequalities people from BAME communities experience.’

Of the 2,126 deaths of people with learning disabilities notified to the LeDeR programme in the calendar year 2019, 72% had a do not attempt cardiopulmonary resuscitation (DNACPR) decision.

The reviewers said they felt only 78% of these were appropriate and correctly completed and followed.

Treatable causes of death accounted for 403 per 100,000 deaths in people with learning disabilities, compared with 83 per 100,000 deaths in the general population, according to the review.

Pneumonia, aspiration pneumonia remain most frequently reported causes of death

LeDeR programme lead at the University of Bristol Pauline Heslop said pneumonia and aspiration pneumonia remained the most frequently reported causes of death, with little change over the past year.

Mencap chief executive Edel Harris called on the government to respond to the report, saying: ‘Little progress has been made in tackling the huge health inequalities that people with a learning disability face.’

A spokesperson for the Department of Health and Social Care said: ‘Already in response to LeDeR we committed to mandatory training about learning disability and autism for all health and social care staff, which will give staff the skills and confidence to better support patients.

‘We know there is more to do and will consider the report and its recommendations.’


Find out more

LeDeR Annual Report 2019


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