Learning disability register enrolment in young people in England: a cohort study using primary care data.

Abstract

Background: Learning disability registers in UK primary care support proactive care, but under-identification remains substantial. The 2019 NHS Long Term Plan introduced targets to increase enrolment.

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 Aurum database, 2015-2023.

Method: Young people aged 14-24 years who had been registered ≥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-10-fold rises between 2015 and 2023. Prevalence was higher in males (rate ratios 1.7-1.8, 95% confidence interval = 1.6 to 1.9).

Conclusion: 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 during the transition to adulthood.