LeDeR report 2022: Four in 10 deaths of people with a learning disability were avoidable

Of the 3,648 people with a learning disability who died in 2022, four in 10 deaths could have been avoided, according to the latest Learning from lives and deaths of people with a learning disability and autistic people (LeDeR) report.

While the report reveals a slight improvement in the number of avoidable deaths compared to the previous year (50%), this number is still much higher than the population average of 22%.

The LeDeR report also reveals worrying trends in the number of people with learning disabilities dying during heatwaves, as well as disparities among ethnic minority groups and those living in the most deprived areas.

The ‘Spot the difference report’

Every year, the LeDeR report seeks to investigate and learn from the avoidable deaths of people with a learning disability in England. This year, the report was led by researchers from the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London, the University of Central Lancashire, and Kingston University London.

There were a number of changes made to this year’s LeDeR report, including more input from people with lived experience, particularly the Staying Alive and Well group. The researchers say without their contribution, this report would not be possible.

This group is calling the 2022 LeDeR report the ‘Spot the difference report’, due to the lack of changes seen year after year. The group says while there have been a few, minor improvements, too many with people with learning disabilities are still dying before they should.

Indeed, the 2022 LeDeR report has revealed that 3,648 people with a learning disability (including autistic people with a learning disability) died in the 12 months of 2022 (1^st January to December 31^st). This includes the deaths of 285 children aged four to 17.

While the median age of death has risen to 62.9 years old, up from 61.8 years in 2018, Professor Irene Tuffrey-Wijne, leader of the Staying Alive and Well group, says: “We cannot sugar-coat the stark truth that people with learning disabilities still die several decades earlier than the general population, and that many of these deaths are avoidable.”

Key points 3,648 people with a learning disability (including autistic people with a learning disability) died in the 12 months of 2022. There was a drop in the number of avoidable deaths in 2022, but it still remains high at 42% compared to 22% in the general population. The most common cause of death was diseases of the circulatory system, with Covid-19 dropping from the most common cause of death to the sixth most common. There was a small increase in the age people are living to, rising to 62.9 years old in 2022 from 61.8 years in 2018. People from all ethnic minority groups died younger than people from white backgrounds. More people from deprived areas are dying early compared to the least deprived areas. 25% of deaths that occurred in 2022 were referred to a coroner, this compares to 36% among the general population. 74% of people who died in 2022 had a DNACPR in place at the time of death. The leading cause of death among autistic people without a learning disability was suicide, misadventure or accidental death. The median age at death for the 178 autistic adults with a learning disability was 55 years.

Dan Scorer, Head of Policy and Public Affairs at Mencap agrees that the report begs important questions around how much of an improvement has been made.

“It’s been 10 years since the Confidential Inquiry into the Premature Deaths of People with a Learning Disability, and many of the recommendations for improvements for care haven’t changed since 2013 and the risk of avoidable death for people with a learning disability is still twice that of the general population,” he said.

However, he says that with the introduction of several key programmes, including the Oliver McGowan Training and the Reasonable Adjustment Flag, we have a chance to turn this around.

To do this, we will need “sustained support” from NHS England, Integrated Care Systems and the Department for Health and Social Care, he says.

Excess deaths in summer attributed to heatwaves and rising global temperatures

The most common causes of death in 2022 (excluding ‘other’) were circulatory system (16.7%), cancers (14.6%), respiratory system (14.5%), nervous system (13.6%) and congenital malformations and chromosomal abnormalities (13.3%).

The data for 2022 showed an increase in the proportion of deaths due to conditions of the circulatory system, including ischaemic heart disease, with more than one in four avoidable deaths linked to cardiovascular conditions.

Heart conditions were also a leading cause of avoidable deaths, with more than a quarter (26.4%) of these deaths linked to cardiovascular conditions, closely followed by respiratory conditions (23.8%) and cancers (15.7%).

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

Indeed, in July 2022, excess deaths increased by 67%. This month saw the highest number of death notifications across the whole year, with 13% occurring on the 19th and 20th July.

The 19th July saw a record high temperature of 40.3°C in England, and since this spike was not due to Covid-19 or flu, the authors conclude that it may be linked to the extreme heat.

Disparities across ethnic and socioeconomic groups

There were also concerning disparities across racial and ethnic groups, and stark differences across socioeconomic groups.

In 2022, people from all ethnic minority groups died at a younger age in comparison to people of white ethnicity, with people from Black, Black British, Caribbean, or African backgrounds 190% more likely to die earlier in comparison to people from white backgrounds.

Asian or British Asian people with learning disabilities were 150% more likely to die early, while people of mixed ethnicity were 81% more likely.

Furthermore, 25% of people with a learning disability who died in 2022 lived in the most deprived neighbourhoods by decile, compared to 10% in the least deprived, highlighting the stark inequalities across socioeconomic backgrounds.

Quality of care found to be generally good, but concerns raised in a quarter of deaths

To assess the quality of care people with learning disabilities received in 2022, the researchers conducted 563 focused reviews of deaths in 2021 and 503 focused reviews of deaths in 2022. Of these reviews, nine out of 10 included evidence of good practice.

In total, eight out of 10 reviewers indicated that the care package provided met the needs of the individual in deaths in 2022, with the vast majority of overall quality of care ratings falling between 2 (care fell short of expectations) and 5 (good care) on the six-point scale.

The researchers concluded that personalised reasonable adjustments were crucial to good care, and there was a “clear association” between access to appropriate care and reductions in premature death.

However, concerns with care were expressed in 25% of deaths in 2022, down from 39% in 2021. Organisation systems and processes were the most commonly reported area of problems with care.

There were also a concerning number of DNACPRs in place at the time of death, with nearly three quarters (74%) of people who died in 2022 having a DNR order in place. Reviewers judged this was correctly followed 63% of the time, a slightly increase compared to 2021 (61%).

For the first time, the LeDeR report analysed the deaths of autistic people too

This year’s LeDeR report has differed from previous reports as it also looked at the deaths of autistic people with and without a learning disability. However, there were only a small amount of reviews (36) conducted for autistic people, and the authors say only limited conclusions can be made.

Of these reports, the most frequent cause of death was suicide, misadventure or accidental death, with roughly one third (11 out of 36) dying from these causes. This was followed by respiratory conditions (8), cardiovascular or stroke related conditions (<5) or cancer (<5).

The report also looked at the deaths of 178 autistic adults with a learning disability and found that the median age at death was just 55 years old. This compares to 62 years for adults with a learning disability only, and 83 years in the general population.

The five most frequent causes of death (excluding ‘other’) were respiratory conditions (66), cardiovascular conditions (27), cancer (22), Covid (17) and stroke, cerebral haemorrhage or embolism (8).

Tim Nicholls, Head of Influencing and Research at the National Autistic Society said while he is cautious about making conclusions due to the low number of reviews of autistic people, the report highlights the barriers autistic people face in the health service, and the lack of awareness about the risks of suicide.

Mr Nicholls says while including autistic people in the LeDeR Review is a “step towards” improving health outcomes, much more needs to be done. This includes training all staff in autism to ensure health services work for autistic people in the same way they work for everyone else.

‘We must not overlook how much we still don’t know’

While this year’s LeDeR report shows that improvements have been made in some areas, such as the age at death increasing and avoidable deaths decreasing, ultimately, people with learning disabilities are still dying decades younger than the general population, and often for reasons which are avoidable.

Professor Andre Strydom, the report’s Chief Investigator and a Professor in Intellectual Disabilities at King’s IoPPN says for this reason, it is clear that “more work still need to be done.”

“People from ethnic minority groups died younger, and there is a need to improve access to care pathways to improve prevention and better manage some conditions in people with a learning disability, such as cancer, lung, heart and circulatory conditions.

“We also identified a concerning effect on excess deaths of people with a learning disability during heatwaves. This means care homes and hospitals looking after people with a learning disability need to be better prepared for weather events in the light of climate change.

“Improvements during 2022 should certainly be celebrated, but we shouldn’t overlook how much we still don’t know,” he said.

Professor Umesh Chauhan, Professor of Primary Care at the University of Central Lancashire says measures now needs to be put in place to reduce these avoidable deaths wherever possible.

This includes “improved uptake of vaccination programmes, and effective management of conditions such as epilepsy and mental health problems.”