Learning disability register enrolment in young people in England: Cohort Study, 2015–2023

Background

Young people with learning disabilities experience significant health inequalities, including avoidable deaths. Learning disability registers in UK primary care support proactive care, but under-identification remains substantial. The 2019 National Health Service (NHS) Long Term Plan introduced targets to increase enrolment on learning disability registers.

Aim

To estimate prevalence and rates of new registration to learning disability registers among young people aged 14–24 years in England and examine changes following the introduction of national targets.

Design and setting

Population-based open cohort study using routinely collected primary care data from general practices in England contributing to the Clinical Practice Research Datalink (CPRD) Aurum database, 2015–2023.

Methods

Young people aged 14–24 years who had been registered at least 6 months were included. Annual rates of new registration per 10,000 person-years at risk (PYAR) and recorded prevalence were calculated, stratified by age, sex, region, and year.

Results

Between 2015 and 2023, 11,776 young people were first recorded on a learning disability register. Rates of new registration increased in 2020–2021 across ages and sexes, peaking at 15.8 per 10,000 PYAR in males aged 14–17 years and 8.4 per 10,000 in females before returning to pre-2019 levels by 2023. Recorded prevalence remained low overall (0.03%–0.5%; 3.6–52.7 per 10,000) but increased among those aged 18–24 years, with eight-to-ten-fold rises between 2015 and 2023. Prevalence was higher in males (rate ratios 1.7–1.8, 95% confidence interval 1.6–1.9).

Conclusions

National targets coincided with a temporary rise in enrolment, but identification remains below expected prevalence. Sustained policy focus and systematic identification and coding by practices are needed to ensure equitable access to preventive care for young people with learning disabilities during the transition to adulthood.

Key messages

• This research provides commissioners with evidence to sustain national learning disability identification targets, enabling earlier identification and more equitable access to care.

• This work is being used to advocate for national cross-sector guidance and clear pathways for identifying learning disabilities across health and education, improving consistency of support.