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People with learning disabilities four times more likely to die from treatable conditions, finds report


By Awil Mohamoud
Reporter
21 July 2020

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People with learning disabilities in England are four times more likely to die from treatable medical causes compared with the general population, according to a University of Bristol report

The latest annual report from the Learning Disability Mortality Review (LeDeR) programme found that a third (34%) of deaths of people with learning disabilities involved ‘medical causes’, which could have been treated ‘with access to timely and effective healthcare’. In contrast, that figure was just 8% for deaths in the general population. 

Treatable causes of deaths accounted for 403 in 100,000 deaths among people with learning disabilities, compared with just 83 in 100,000 deaths among the general public, according to the report.

The LeDeR programme, which has reviewed 3,195 deaths of people with learning disabilities to date, found in this latest report that pneumonia caused two-fifths of adult deaths and almost a quarter of child deaths over the past year. 

Professor Pauline Heslop, the programme lead at the University of Bristol, said the fact that the infection is ‘preventable’ and ‘treatable’ makes this finding ‘concerning’, and that addressing this issue ‘remains an urgent priority’. 

She added: ‘The disparity between people with learning disabilities and the general population in relation to average age at death, causes of death, and avoidable causes of death remains substantial and urgent action is needed.’

The LeDeR programme had also been notified of a series of deaths in the learning disability population caused by epilepsy, diabetes, asthma and influenza. 

The figures also show that, overall, the average age of deaths for people with learning disabilities, 61 for males and 59 for females, is much younger than the rest of the population. 

People with learning disabilities from BAME groups also died disproportionately at younger ages than white British counterparts. Of those who died in childhood (ages four to 17 years), 43% were from BAME backgrounds, the report found.

‘Gaps in service provision’

The report also examined the relationship between the ‘quality of care’ that people with learning disabilities received and the deaths reported. 

It found that ‘gaps in service provision’ may have contributed to the death of a person with a learning disability in 7% of cases. 

These ‘gaps’ include significant delays in diagnosis and treatment, omissions in care, unsafe discharges from hospital, ‘non-referral to’ specialist learning disability services, a lack of care coordination and out-of-date social care assessments, it said.  

A greater proportion of deaths reviewed in 2019 (56%) showed that the person had received care that met or exceeded good practice, compared with deaths reviewed in 2018 (48%).

The reviewers also found more examples where ‘best practices’ had been implemented in a person’s care, including a person-centred approach, multi-agency working and the use of reasonable adjustments. 

Recommendations

The report made a series of recommendations to care providers and various bodies with the aim of reducing deaths from treatable medical causes among people with learning disabilities. 

It urged care providers to consider the recommendations from the Department of Health’s Best practice in care coordination for people with a learning disability and long term conditions report. 

It called for the introduction of specialist physicians for people with learning disabilities who would work within multidisciplinary teams, and new training routes, including a diploma in learning disabilities medicine and for the Royal College of Physicians to introduce a ‘learning disabilities’ speciality.

The report pushed for commissioning programmes that develop different models of care coordination for adults and children with learning disabilities. 

It encouraged further use of the National Early Warning Score 2 regionally, such as the Restore2 tool in Wessex, to assist care providers in spotting early signs of deterioration in physical health in people with learning disabilities. 

It also called for more evidence-based guidance from the National Institute for Health and Care Excellence (NICE), that is inclusive of prevention, diagnosis and management of aspiration pneumonia. 

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