Children and young people with learning disabilities are at a higher risk of premature death compared to the general population. Studies of cause of death for people with learning disabilities show that many deaths are potentially avoidable, including conditions which are amenable to timely and effective healthcare.
A national cohort of children and young people with and without learning disabilities was established using data from Scotland’s pupil census records (2008-2013) linked to the National Records of Scotland’s death register up to 2015. Pupils who had Additional Support Needs at school due to learning disabilities were identified and the mortality rates were compared to pupils without learning disabilities. The most common causes of death were investigated. Avoidable deaths were identified using the UK Office of National Statistics definition.
This study identified 106 deaths (0.6%) from 18,278 children and young people who had learning disabilities, 1.9% of pupils at school. Premature mortality was 12 times higher (ranging between 10 and 14 times). For girls and young women, risk of death was even higher, at a rate 17 times higher than their peers without learning disabilities (between 12 and 23 times).
The most common causes of death were from nervous diseases (33%), followed by congenital (22%) and metabolic conditions (8%) and respiratory diseases (8%). Deaths involving respiratory diseases occurred at a rate 55 times higher than for pupils without learning disabilities. Deaths related to digestive conditions and circulatory diseases, as well as deaths involving accidents also occurred at higher rates. Potentially avoidable deaths included pneumonia and epilepsy.
This research demonstrates that health inequalities faced by people with learning disabilities are contributing to premature deaths in childhood and young adulthood. Improvements to recognition and management of epilepsy, as well as resources and training for prevention and treatment of dysphagia and aspiration are needed. Collaboration between healthcare and social care, and more support for families and people with learning disabilities, could improve recognition and timely treatment of important health issues.
The full published findings are available at the link below, along with an Easy Read summary.
Below you will also find a link to a short film about reducing avoidable deaths in children and young people with learning disabilities, made with people with lived experience, third sector partners and health professionals.
Project information last updated February 2022.
Project Lead: Gillian S Smith
Team: Michael Fleming, Deborah Kinnear, Angela Henderson, J P Pell, Craig Melville, Sally-Ann Cooper
Deborah is the Director of the Scottish Learning Disabilities Observatory and Professor of Health and Neurodevelopmental Conditions, in the School of Health and Wellbeing, at the University of Glasgow. Deborah is passionate about her research which aims to improve the health of people with learning disabilities and their families. She has worked on many different projects about people with learning disabilities including: cancer incidence, cancer screening, multi-morbidity (having two or more health conditions), oral health and COVID-19, to name a few. She has also worked on projects about the physical and mental health of family members who support someone with a learning disability. Deborah is committed to conducting research that has impact and works closely with self-advocates with learning disabilities, family carers and third sector organisations who are pivotal in all of her work and who have a shared vision of ensuring the human rights of all people with learning disabilities are recognised, supported and upheld. Read more about Deborah here.
Craig is a Professor of Neurodevelopmental Psychiatry in the School of Health and Wellbeing at the University of Glasgow. His work focuses on using evidence from research to inform the development of interventions and policy to improve the health of people with neurodevelopmental conditions. Craig has worked on clinical trials of complex interventions, such as psychological therapies, weight management and health checks in primary care. Evidence from epidemiological research has been central to the development of these clinical trials and his work with SLDO centres on how to use Scotland’s national datasets to understand and tackle the health inequalities experienced by people with neurodevelopmental conditions.
Angela was formerly the Director for Policy and Impact for the Scottish Learning Disabilities Observatory and remains an affiliate team member, having moved in 2024 to work with the Scottish Government leading the development of annual health checks and learning disabilities data. Angela is interested in how evidence is used in policy making and was involved in many projects at the Observatory. These included: Understanding the impact of Covid-19 on people with learning disabilities The Research Voices Project Helping to set up the SPIRE learning disabilities data project Analysing information about drug prescribing for people with learning disabilities
