Management of long term health conditions amongst adults with learning disabilities in primary care settings

Medication, Prescribing and Healthcare Services | Last Updated: 20 Apr 26

Background

People with learning disabilities face barriers in accessing health services, compounded by communication difficulties, and organisational and social support limitations. As a result, this may contribute to the poorer health and higher levels of multi-morbidity experienced by people with learning disabilities in comparison to the general population. In order to reduce inequities, primary health care providers need to effectively manage long-term conditions in keeping with best practice. However, current evidence suggests this may not always occur. This project measured the management of long-term conditions within primary health care for adults with learning disabilities, and compared this with the general population. Additionally we investigated the number of recognised health conditions experienced by adults with learning disabilities compared with the general population, and the potential influence of a range of individual, social and environmental factors upon these health problems.

What we did

In the UK, general practitioners/family physicians receive pay for performance on management of long-term conditions, according to best-practice indicators. These indicators are specified in the general practitioners’ contract (the “Quality and Outcomes Framework”). The primary health care records of a population based cohort of adults with learning disabilities were scrutinised to determine performance on management of long-term conditions according to Quality and Outcomes Framework indicators. Management of long‐term conditions was compared between 721 adults with intellectual disabilities and the general population (n = 764,672). Prevalence of long‐term conditions was determined, and associated factors were investigated via logistic regression analyses.

What we found

Adults with intellectual disabilities received significantly poorer management of all long‐term conditions on 38/57 (66.7%) indicators. Achievement was high (75.1%–100%) for only 19.6% of adults with intellectual disabilities, compared with 76.8% of the general population. Adults with intellectual disabilities had higher rates of epilepsy, psychosis, hypothyroidism, asthma, diabetes and heart failure. There were no clear associations with neighbourhood deprivation.

What these findings mean

Adults with learning disabilities receive poorer care, despite conditions being more prevalent. The imperative now is to find practical, implementable means of supporting the challenges that general practices face in delivering equitable care.

Group member(s) involved with this study

Professor Anna Cooper

Anna set up the Scottish Learning Disabilities Observatory with funding from the Scottish Government. She wants the Observatory to make Scotland fairer and healthier for people with learning disabilities and their families, by: Finding out the health problems people have Finding out how good or bad health care is Telling people about health and health care problems Finding ways to make health and health care better Checking if health gets better or worse over time Helping the Scottish Government, and staff who provide health and social services, to get it right for people with learning disabilities Anna is a doctor. She has done a lot of studies on the health of people with learning disabilities. Anna’s full name is Professor Sally-Ann Cooper.

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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

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

Professor Craig Melville

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.