Avoidable deaths of people with learning disabilities still above general public

Care and outcomes for people with learning disabilities are still often below acceptable standards compared with the general population, a report into avoidable deaths has concluded.

The proportion of such deaths in England last year was lower than the previous year, but remains well above the figure for the wider population, the annual Learning Disability Mortality Review (LeDeR) found.

The 2022 report, published on Thursday, found that of the 2,054 adults with a learning disability who died that year and had a completed recorded underlying cause of death, 853 (42%) had deaths classified as avoidable.

This was down on the 2021 figure of 50% of avoidable deaths among adults with a learning disability, but remains “significantly higher” than the percentage for the general population across Great Britain, which was 22.8% in 2020 – the latest data available.

The report was produced by academics at Kingston University with researchers from King’s College London and the University of Central Lancashire as part of the NHS England and NHS Improvement-funded LeDeR programme to improve healthcare for people with a learning disability and autism, reduce health inequalities and prevent early deaths.

The authors said: “We believe that things may not be improving fast enough, and overall care and outcomes all too often still fall below acceptable standards compared to the general population.

“This is true even with the good and hard work performed by care professionals throughout England, and by improved NHS policy changes.”

Just over half (55%) of the more than 2,000 people with a learning disability who died in 2022 were male, while 94% were white and a quarter lived in the most deprived neighbourhoods, the report said.

The most commonly reported underlying causes of death were related to diseases of the circulatory, respiratory or nervous systems.

Diseases of the circulatory system caused a slightly higher percentage of deaths in 2022 compared with recent years, while diseases of the respiratory system fell slightly but remained the second most common cause of death, the report said.

Looking specifically at those deemed to have died avoidable deaths, the authors concluded that the highest odds of this were for the 24-49 age group, while being male resulted in a 22% higher risk of dying from an avoidable cause.

Long-term conditions associated with a greater risk of avoidable death included cardiovascular conditions and osteoporosis, while dementia was shown not to be significantly associated with avoidable death.

The report recommended prevention and better management of avoidable and long-term conditions in adults, particularly among 25 to 49-year-olds, improved management of specific long-term and recurrent conditions, and addressing reasons for increased risk of avoidable death in males compared with females.

The report also noted “a concerning effect on excess deaths of people with a learning disability during heatwaves, which may become more frequent in the future due to global warming”.

Authors said “guidance and adaptations” might need to be considered “to protect vulnerable individuals during extreme weather”.

The latest report included, for the first time, figures on deaths of autistic adults without a learning disability.

The authors warned that because the number of reviews included were small (36) they were not representative of all autistic adults without a learning disability, adding that “only limited conclusions can be made”.

Most of this group who died were male (81%) and fewer than five identified as neither male nor female, or transgender, but this was not reported in order to ensure no identification could be made, the report said.

The most frequent causes of death in these reviews were suicide, misadventure or accidental death (11), while the second most frequent cause was respiratory conditions (8).

Of the 178 autistic adults with a learning disability, the median age at death was 55, while the most frequent causes of death were respiratory conditions (66) followed by cardiovascular conditions (27).

The authors described inclusion of data for autistic people as a separate group for the first time as “a step towards improving information and data collection on the causes of death for autistic people in England”.

While it will be a gradual process, “the information gathered should increasingly impact as awareness and reporting improves in future years”, they added.

An NHS spokesperson said: “As well as showing signs of improvement despite the impacts of the pandemic, this report also serves as another vital reminder of the progress that is still needed to better serve the health needs of people with a learning disability and autistic people.

“That is why our work to develop a Reasonable Adjustments Digital Flag is so crucial, as it means health and social care staff can record, share and view details of a patient’s disability needs and make necessary adjustments to care, which has huge potential for improving health outcomes and potentially saving lives.”

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