Learning Disability, Autism and ADHD Data Set

In 2007, following a series of critical investigations, the Department of Health launched an inquiry into the accessibility and quality of healthcare for people with a learning disability. The inquiry found compelling evidence of significantly poorer care for this group, compounded by their near-invisibility in official statistics. Unlike age or ethnicity-based groups, people with a learning disability were not identified in national datasets, making it impossible to assess the scale of disadvantage, measure improvements, or inform policy and service change.

Since 2006/07, GP registers have included patients with a learning disability, underpinning eligibility for annual health checks. However, while overall numbers have been published, these registers have not been connected to other clinical or demographic data needed to understand health outcomes, inequalities, or access patterns at a national level.

In response to these gaps, the Health and Care of People with Learning Disabilities (HCPLD) dataset was introduced in 2015. Designed as an aggregate extract without person-identifiable data, the HCPLD was expanded in 2020 to include autistic individuals. Data from the HCPLD provided new insights into age distribution, cancer screening rates, immunisation coverage, prescribing and prevalence of conditions such as obesity, diabetes, stroke, and dementia. It has helped highlight disparities in care and outcomes and informed national programmes like STOMP/STAMP, which aim to reduce inappropriate prescribing of psychotropic drugs.

The proposed new patient-level data set will replace the current HCPLD. It will include most of the data items currently covered by the HCPLD but will also expand upon it to additionally cover:

• people with attention deficit hyperactivity disorder (ADHD) as a cohort in their own right
• data to support assessment of the quality of health checks for people with a learning disability
• a more comprehensive list of the long-term conditions identified as the primary causes of premature mortality and morbidity for people with learning disabilities
• data to support NHS England’s autism and ADHD programmes understand and address the primary health issues for these groups.

Previously, only minimal data was collected for the ADHD group to gain a better understanding of ADHD as a co-occurring condition with learning disability and autism. The addition of patients with a diagnosis of ADHD to the data set reflects the increasing numbers of referrals for assessment and treatment and increasing numbers of prescriptions for ADHD together with NHS England’s strategic focus on this condition.

This service is commissioned by NHS England.