Identifying people with a learning disability: an advanced search for general practice

Amy M Russell, Louise Bryant, Allan House

People with learning disabilities (LD) have poor physical and mental health when compared with the general population. They are also likely to find it more difficult than others to describe their symptoms adequately. It is therefore harder for healthcare workers to identify the health needs of those with learning disabilities, with the danger of some problems being left unrecognised. Practice registers record only a proportion of those who are eligible, making it difficult to target improvements in their health care. To test a Read Code search supporting the identification of people with a mild-to-moderate learning disability who are not currently on the learning disability register. An observational study in primary care in West Yorkshire. Read Code searches were created to identify individuals with a learning disability not on the LD register; they were field tested and further refined before testing in general practice. Diagnostic codes identified small numbers of individuals who should have been on the LD register. Functional and service use codes often created large numbers of false-positive results. The specific descriptive codes 'Learning difficulties' and 'Referral to learning disability team' needed follow-up review, and then identified some individuals with LD who were not on the register. The Read Code search supported practices to populate their registers and was quick to run and review, making it a viable choice to support register revalidation. However, it did not find large numbers of people eligible for the LD register who were previously unidentified by their practice, suggesting that additional complementary methods are required to support practices to validate their registers.