People living with severe intellectual disabilities are dying 24 years younger on average than the wider population, a study has found, with 40% of such deaths being avoidable.
The study also found that within this group, people from minority ethnic backgrounds were dying 14 years younger than their white counterparts.
Researchers from King’s College London analysed data from the Office for National Statistics (ONS) and the LeDeR programme of 1,301 adults with severe or profound intellectual disability who died in England between 2021 and 2023.
They then compared this with 2,626 adults with a mild or moderate intellectual disability and 536,311 adults from the general population who died in 2022.
People with severe or profound intellectual disability died at an average age of 58, compared with 65 for those with a mild or moderate intellectual disability and 82 for the general population.
Two in five of the first group’s deaths were judged to be avoidable. Avoidable deaths were defined as deaths occurring before the age of 75 due to preventable or treatable causes.
Pneumonia and epilepsy were the leading avoidable causes, notably higher than in the other two groups, followed by cerebrovascular disease (concerning blood flow and blood vessels in the brain).
Jon Sparkes, the chief executive of learning disability charity Mencap, called the findings shocking but “sadly unsurprising”. “Much more must be done to ensure people with the most complex needs can access care,” he said.
“Organisational failings were identified in more than 40% of deaths reviewed last year, showing the way the NHS just isn’t designed to work for people with a learning disability.
“This research shows why it is so vital that that the government and NHS consider and meet the needs of people with a learning disability, whether in the new neighbourhood health schemes, through work on moving the NHS to be more digital, or preventing poor health. Only by doing this will we address and end the deep-rooted healthcare inequalities that are cutting lives short.”
The analysis also found stark ethnic disparities. Within the group of people living with severe or profound intellectual disabilities, those from Black, Asian and other minority ethnic backgrounds were likely to die significantly sooner than their white peers, with a 14-year disparity.
According to the researchers, this variance may highlight additional challenges in accessing healthcare encountered by people from ethnic minorities, and also reflects how compounding inequalities exacerbate the already poorer health outcomes people with disabilities face.
Dr Michael Kwan Leung Yu, the first author of the study and a postdoctoral research associate at King’s College, said: “LeDeR provides a unique national lens that no single trust or region can offer. Its scale allows us, for the first time, to examine avoidable deaths among adults with severe or profound intellectual disabilities through a population-based analysis and explore this in greater detail.
“The findings point to a need for targeted interventions, including annual health checks, vaccination programmes and timely management of conditions such as pneumonia and epilepsy, reaching adults with severe or profound intellectual disability consistently, with particular attention to those from ethnic minority backgrounds.”
Dr Rory Sheehan, a co-first author of the study and senior clinical lecturer at King’s institute of psychiatry, psychology and neuroscience, said: “Pneumonia and epilepsy are largely treatable, so seeing them as leading causes of avoidable death in this group points to a gap between the care people could receive and the care they are getting.
“Closing that gap means making sure basic interventions, health checks, vaccination [and] timely treatment reliably reach adults with severe or profound intellectual disability.”
