Epilepsy Information Standard
Epilepsy is not recorded or shared consistently across health and care. This standard has been developed to address challenges by setting out a nationally agreed, structured approach to recording and sharing epilepsy related information.
Contents
About this standard
- Publisher
- NHS England
- Status
- Draft in progress
Show definitions of statuses
Active. Active standards are stable, maintained and have been approved, assured or endorsed for use by qualified bodies.
Deprecated Deprecated standards are available for use and are maintained, but are being phased out, so new functionality will not be added.
Retired standards Retired standards are not being maintained or supported and should not be used.
- Standard type
- Information standards
Show definitions of standard types
Collections. A Collection is a systematic gathering of a specified selection of data or information for a particular stated purpose from existing records held within health and care systems and electronic devices.
Extractions. An extraction is a type of collection that is pulled from an operational system by the data controller and transmitted to the receiver without additional processing or transcription by the sender.
Information standards. Information standards are agreed ways of doing something, written down as a set of precise criteria so they can be used as rules, guidelines, or definitions.
Technical Standards and specifications. Technical standards and specifications specify how to make information available technically including how the data is structured and transported.
- Contact point
england.standards.assurance@nhs.net
Using this standard
The Professional Record Standards Body (PRSB) were commissioned by NHS England to develop the following set of resources. These have been migrated into the NHS Standards Directory and will be managed by NHS England from 01 January 2026.
- Associated medias
- Applies to
- The standard covers both children and adults with epilepsy
Topics and care settings
- Topic
- Care
- Care records
- Health
- Care setting
- Ambulance (Urgent and Emergency Care)
- Care home
- Community health
- GP / Primary care
- Home
- Hospital
- Maternity
- Urgent and Emergency Care
- Walk in centre
Review Information
- Scope
- The standard covers both children and adults with epilepsy. Scope includes data relating to epilepsy which supports direct care, national audit, care planning and sharing between care settings.
- Contributor
- Professional Record Standards Body (PRSB)
Legal basis
- Licence information
This standard is owned by NHS England and is made available for reuse or amendment under the Open Government Licence v3.0 (OGL 3.0).
- Licence
Open Government Licence v3.0 (OGL 3.0) https://www.nationalarchives.gov.uk/doc/open-government-licence/version/3/
More information
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.
(*Epilepsy 12: Find out more: RCPCH work to improve the quality of care for children and young people with seizures and epilepsies in England and Wales.)
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.
About this standardNHS England commissioned the PRSB to explore the development of an information record standard for epilepsy. The overall aim of the standard is to support the integrated and continuous care of epilepsy across settings by developing epilepsy data items.
This work will also contribute to the delivery of the NHS England 10-Year Plan by supporting national strategic priorities for digital transformation and could enable the development of a Single Patient Record.
The first three phases of this project — discovery, user-centred design, and consultation on the draft information record standard — were completed prior to the full standard development. The following outputs from these phases are available to view in the associated media section of this page.
ScopeThe scope of this standard covers both children and adults with epilepsy. Scope includes data relating to epilepsy which:
- might be required at point of care
- might be shared between different settings
- a patient might wish to share
- might be required to support national audit and approved research purposes
- might be required to support care planning.
This standard has been published in draft for review and has now entered the endorsement phase managed by the PRSB.
Page last updated: 15 January 2026