Avoidable deaths in children and young people with learning disabilities in Scotland

Life Expectancy & Mortality | Last Updated: 13 Oct 25

Background

Children and young people with learning disabilities are more likely to experience physical and mental ill health than their peers without learning disabilities. People with learning disabilities die earlier on average, up to 20 years earlier than the general population. They are also over-represented in deaths that are considered avoidable, for example with treatment by timely and effective healthcare. Children and young people with learning disabilities may be at increased risk of premature death compared with adults with learning disabilities, including deaths considered avoidable, but the evidence is limited.

What we did

We linked Scotland’s 2011 census data to death registrations to look at all deaths in children and young people (5-24 years) in Scotland between 2011 and 2020.

What we found

Children with learning disabilities were 11 times more likely to die in childhood than their peers with no learning disabilities.

There were 788 deaths in children and young people overall up to 2020
3.6 % with learning disabilities died (260 children and young people)
0.3 % without learning disabilities died (528 children and young people)
Crude mortality rates are 388 deaths per 100,000 (95% confidence intervals 344, 349) in the group with learning disabilities and 36 per
100,000 (95% CI 33, 39) in the group without learning disabilities
Median age of death was 3.5 years younger for those with learning disabilities, at 19.5 years
More deaths in childhood (those aged 5-14) for those with learning disabilities

Deaths which could be avoided through prevention or good quality health care were more common:

34% of deaths amongst children and young people with learning disabilities were avoidable
23% were treatable [i.e., avoidable through good quality healthcare, even after a condition has developed (e.g., epilepsy, pneumonia including flu, aspiration-related infection, or lung injury)]
13% were preventable [i.e., avoidable through incidence reduction via public health interventions (e.g., accidents including choking)]

The mortality gap for children with learning disabilities compared to their peers is especially wide for:

females
treatable deaths
diseases of the nervous system, respiratory system, and digestive system

What these findings mean

These results draw attention to the conditions which are most likely to be the cause of health inequalities experienced by young people with learning disabilities who have complex care needs and highlights important areas to be targeted to reduce premature mortality.

You can read the full journal article in the BMJ Open at the link below.

You can also find an Easy Read summary of these findings linked below.

Project information last updated 31st August 2022

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Dr Laura Hughes

Laura is a Lecturer in Clinical Psychology at the University of Glasgow, and an affiliate of the Scottish Learning Disabilities Observatory, having joined the team in 2015. With the Observatory, Laura was involved in projects looking at the health of people with learning disabilities in a number of large data-sets, including primary health care records, Scotland's 2011 Census and health records of people born with Down Syndrome in Scotland over a 25 year period. Laura studied Psychology and has extensive experience of working with people with learning disabilities in her previous roles, for example, as a Befriender, a Learning Assistant and an Assistant Psychologist. Read more about Laura at the link below

Dr Ewelina Rydzewska-Fazekas

Ewelina is an Affiliate Associate Researcher with the Scottish Learning Disabilities Observatory. Ewelina's work with the Observatory focused around health inequalities and the health needs of people with autism. She is now based at the University of Edinburgh School as a Lecturer in Health Futures at the Edinburgh Futures Institute and School of Health in Social Science.

Dr Kirsty Dunn

Kirsty is a Lecturer in Clinical Psychology at the University of Glasgow, and is an affiliate of the Scottish Learning Disabilities Observatory, having joined the team in 2015. She is interested in the health and wellbeing of individuals with learning disabilities and their families. Previously, Kirsty has worked on projects examining patterns of hospital admissions, prevalence of physical and mental health conditions, and the impact of caring for a son/daughter with learning disabilities on fathers. Her current research projects are exploring: The impact of bullying on young people's mental health Common mental health conditions experienced by children and young people Patterns of long-term health conditions and prescribing in adults

Dr Laura Ward

Laura is an Affiliate Associate Researcher at the Observatory, involved in ongoing work about cancer screening, cancer incidence and cancer-related deaths, as well as pain and prescribing in adults with intellectual disabilities/autism. In 2023, Laura took up the role of Project Manager of the Trusted Research Environment (TRE) at the Health Informatics Centre (HIC) at the University of Dundee. The TRE, or Safe Haven as it is known in Scotland, is responsible for curation and provisioning of NHS Scotland patient data.

Angela Henderson

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

Dr Maria Truesdale

Maria is a Senior Lecturer in Intellectual Disabilities at the University of Glasgow. Her goal is to improve the physical and mental health and wellbeing of people with intellectual disabilities and their carers through the evaluation, development and testing of complex interventions using gold standard methodology and inclusive research. Maria has conducted a number of trials using complex interventions in physical and mental health for people with intellectual disabilities and has played a central part in the development of a randomised control trial of the clinical and cost-effectiveness of the DESMOND-ID structured education programme for adults with intellectual disability and type 2 diabetes. This multi-site study is the largest funded trial internationally of a health behaviour intervention for people with an intellectual disability. Maria also supports the teaching and delivery of the Post Graduate Positive Behaviour Support programme and contributes to the supervision of University of Glasgow Postgraduate courses, namely MSc in Global Mental Health and MSc in Public Health. She is also the Mental Health and Wellbeing co-lead for Early Career Researchers. Recent and current projects have been funded by NIHR, ESRC (UK Research and Innovation), Baily Thomas Charitable Fund and The Burdett Trust for Nursing.

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Dr Filip Sosenko

Filip joined the Scottish Learning Disabilities Observatory in 2021 as a Research Associate and is currently conducting research into covid-19 outcomes among people with learning disabilities. His previous research focused on severe poverty and associated phenomena, such as the use of food banks, homelessness, and ‘complex needs’. A sociologist by background, Filip has a keen interest in health inequalities. He has advanced statistical skills and expertise in research methodology.

Professor Deborah Cairns

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.