Compiling a register of patients with moderate or severe learning disabilities: experience at one United Kingdom general practice

Background Identifying patients with learning disabilities within primary care is central to initiatives for improving the health of this population. UK general practitioners (GPs) receive additional income for maintaining registers of patients with learning disabilities as part of the Quality and Outcomes Framework (QOF), and may opt to provide Directed Enhanced Services (DES), which requires practices to maintain registers of patients with moderate or severe learning disabilities and offer them annual health checks.Objectives This paper describes the development of a register of patients with moderate or severe learning disabilities at one UK general practice.Methods A Read code search of one UK general practice's electronic medical records was conducted in order to identify patients with learning disabilities. Confirmation of diagnoses was sought by scrutinising records and GP verification. Cross-referencing with the practice QOF register of patients with learning disabilities of any severity, and the local authority's list of clients with learning disabilities, was performed.Results Of 15 001 patients, 229 (1.5%) were identified by the Read code search as possibly having learning disabilities. Scrutiny of records and GP verification confirmed 64 had learning disabilities and 24 did not, but the presence or absence of learning disability remained unclear in 141 cases. Cross-referencing with the QOF register (n=81) and local authority list (n=49) revealed little overlap.Conclusion Identifying learning disability and assessing its severity are tasks GPs may be unfamiliar with, and relying on Read code searches may result in under-detection. Further research is needed to define optimum strategies for identifying, cross-referencing and validating practice-based registers of patients with learning disabilities.