People with severe intellectual disabilities die on average 24 years younger than the general population, and 40% of these deaths are avoidable, according to a new study. The research also found stark ethnic disparities, with people from minority ethnic backgrounds dying 14 years younger than their white counterparts within this group.
Study findings
Researchers from King’s College London analysed data from the Office for National Statistics (ONS) and the LeDeR programme, covering 1,301 adults with severe or profound intellectual disability who died in England between 2021 and 2023. They compared these with 2,626 adults with 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 mild or moderate intellectual disability and 82 for the general population. Two in five deaths in the first group were judged avoidable, defined as deaths before age 75 due to preventable or treatable causes.
Leading causes
Pneumonia and epilepsy were the leading avoidable causes, notably higher than in the other groups, followed by cerebrovascular disease, which affects blood flow and blood vessels in the brain.
Jon Sparkes, chief executive of learning disability charity Mencap, called the findings shocking but “sadly unsurprising”. He said: “Much more must be done to ensure people with the most complex needs can access care.” He added: “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.”
Ethnic disparities
The analysis also found that within the group 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, a 14-year disparity. Researchers suggested this may highlight additional challenges in accessing healthcare for ethnic minorities and reflect how compounding inequalities worsen health outcomes.
Dr Michael Kwan Leung Yu, first author and 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.” He called for targeted interventions, including annual health checks, vaccination programmes, and timely management of conditions like pneumonia and epilepsy, with particular attention to ethnic minority backgrounds.
Dr Rory Sheehan, co-first author 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.” He stressed the need to ensure basic interventions, health checks, vaccination, and timely treatment reliably reach adults with severe or profound intellectual disability.
