Deterioration in adults with a learning disability in primary care

Background

We have launched an investigation that explores the care adults with a learning disability receive in primary care when their health is deteriorating or they have new symptoms.

A learning disability is where a person has reduced intellectual ability that starts in childhood. This is not to be confused with a learning difficulty which affects a person’s ability to learn but does not affect their intellectual ability.

Approximately 1.3 million adults in England have a learning disability. People with a learning disability are known to have a shorter life expectancy, experience more problems with their health and face difficulties accessing and receiving healthcare.

Evidence suggests that recognising and responding to deterioration depends on access to primary care, initial assessment and diagnosis (including tests) and effective information sharing when referring to specialist services. Each of these can be more difficult for people with a learning disability.

We identified the need for this investigation after engagement with stakeholders, including representatives from national bodies and patient representative groups, to seek their insights in relation to accessing healthcare and being assessed in the community. There was widespread concern relating to when people with a learning disability experience deterioration or change in their health.

We corroborated this evidence with additional sources including incident data, national reports and academic literature.

This will be a two part investigation. The first part will examine how adults with a learning disability are assessed and undergo any relevant healthcare tests. The second part will consider how adults with a learning disability access care in the community, either via their GP or NHS 111 services when they have new or deteriorating symptoms.

The investigation will examine how people with a learning disability are cared for holistically to identify changes in health or a deteriorating condition by understanding:

• how people with a learning disability access primary care services
• how reasonable adjustments are recorded and acted upon
• the role of supporting tools for assessment
• information sharing, including the digital interface that enable the transfer of information.

Early information gathering highlighted significant health inequalities for people with a learning disability, particularly relating to race, the investigation will continue to explore this concern.

The investigation will launch in August 2026, with the first report anticipated to be published in Spring 2027 and the second report to be published in Autumn 2027.

We are keen to hear from anybody with an interest in this subject matter. This includes patients, families, carers and health and care professionals who may wish to share their experience.

Information about this investigation is also available in Easy Read.

If you would like to speak to us about this investigation before we publish the final report, please email investigations@hssib.org.uk.