Epilepsy is a long-term neurological condition that requires coordinated, high-quality care across multiple services and throughout a person’s life. In England and Wales, information about epilepsy is not recorded or shared consistently across health and care systems. This limits access to accurate and timely information for clinicians, places an unnecessary burden on people with epilepsy and their families to repeatedly provide the same details, and reduces the ability to use routine data to improve services, support national audit, and enable research.

Evidence from the Epilepsy12 national audit has repeatedly highlighted variation in data quality, inconsistent recording of diagnoses, and poor interoperability between systems, all of which affect patient safety and continuity of care.

The Epilepsy Information Standard has been developed to address these challenges by setting out a nationally agreed, structured approach to recording and sharing epilepsy related information. By defining a common set of information items supported by consistent clinical terminology, the standard aims to improve communication between professionals, support person centred care, and enable safer, more coordinated management of epilepsy across all care settings.