Read code searches may result in under-detection in primary care registers of patients with learning disabilities


The identification of people with learning disabilities within primary care is a requirement for GPs in the UK who receive additional income for maintaining registers of such as part of the Quality and Outcomes Framework (QOF). If they opt to provide Directed Enhanced Services (DES), they must develop and maintain a register of patients with moderate or severe learning disabilities and offer annual health checks.

Researchers in Yorkshire in this study set out to describe the development of such a register in one UK general practice. They conducted a Read  code search of the practice’s electronic medical records to identify patients with learning disabilities, confirming diagnoses by checking records with GP verification. They also cross-referenced their findings with the QOF register and the list of clients held by the local authority.
229 patients (1.5% of practice population) were identified by the Read code search as possibly having learning disabilities. Checking records and GP verification confirmed 64 had learning disabilities and 24 did not, but for 141, it remained unclear whether or not the patients had a learning disability Cross-referencing with the QOF register and local authority list revealed little overlap.

They conclude from this study that identifying learning disability and assessing its severity relying on Read code searches alone may result in under-detection and that further work is needed to define and develop strategies for identifying, cross-referencing and validating practice-based registers.

Compiling a register of patients with moderate or severe learning disabilities: experience at one United Kingdom general practice, Lodge K et al, in Mental Health in Family Medicine, 8, 1,. 29-37

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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