Avoidable mortality is an under-researched area for adults with learning disabilities. The definition of avoidable mortality includes many preventable and treatable conditions such as heart disease, pneumonia and respiratory conditions. Recent studies suggest that up to 40% of deaths of people with learning disabilities may be avoidable. We identified the need to quantify rates of avoidable deaths in adults with learning disabilities, compared adults in the general population, and to identify major causes of death, particularly those which are avoidable.

We linked data from Scotland’s Census 2011 with records from the National Records of Scotland Statutory Register of Deaths database from 2011 up to 2019. 14, 477 adults aged 25 and over who self- or proxy reported having learning disabilities in Scotland’s Census in 2011 were identified and the mortality rates were compared to adults of the same age without learning disabilities. We examined the rates and most common causes of death.

Key Findings from this study included:
• Young adults (25-34yrs) with learning disabilities are 6 times more likely to die prematurely, while for adults with learning disabilities of all ages, the mortality risk is 3 times higher compared to adults in the general population, demonstrating that health inequalities faced by people with learning disabilities are particularly pronounced in young adulthood.
• Young adults (25-34 yrs) with learning disabilities are 9 times more likely to die of treatable causes of death.
• Adults 25+ with learning disabilities are dying, on average, 15 years younger than adults without learning disabilities.
• Down syndrome was the most commonly-recorded underlying cause of death for adults with learning disabilities, indicating prevailing uncertainty in relation to underlying causes of death in people with learning disabilities and an urgent need to review the way that cause of death is recorded for this population.

These findings indicate that young adults with learning disabilities are disproportionately affected by risk of premature death from avoidable causes. The research identifies a clear need for improvements in the early detection, prevention, care and treatment of health problems experienced by people with learning disabilities. This is essential at all ages, and for people living in all areas; more so than for the general population, these are not issues related to older age nor neighbourhood deprivation.