Epilepsy: key data sources
National Records of Scotland (formerly GROS)
Data on deaths comes from the system for certification administered by the National Records of Scotland (formerly the General Register Office for Scotland).
Scottish Primary Care Information Resource
The Scottish Primary Care Information Resource (SPIRE) was a service that allowed small amounts of information from GP practice records to be used to help doctors’ surgeries, NHS Scotland and the Scottish Government to improve care and plan services, and to help researchers to learn more from patient information held at GP practices. It was closed on 31 August 2023.
Practice Team Information
Until 2012/13, the Practice Team Information (PTI) programme provided information on GP consultations in Scotland (including those for epilepsy). This information could be used to estimate the national prevalence of epilepsy. The PTI programme was discontinued in September 2013 and was replaced by the Scottish Primary Care Information Resource (SPIRE). Historical information on epilepsy consultations and prevalence estimates up to 2012/13 are available from the PTI pages of the PHS (formerly Information Services Division) website.
QOF data
The Quality and Outcomes Framework for the 2004 GMS (General Medical Services) contract, published numbers of people on GP epilepsy registers up to 2014/15. Further information can be found under the "prevalence data" sections of the PHS Quality and Outcomes Framework (QOF) pages.
Hospital discharge data
Statistics on hospital admissions for epilepsy are held in the Scottish Morbidity Record (SMR01) database. These data reflect serious complications of epilepsy but do not provide a true reflection of the prevalence of epilepsy, as only a minority of people with epilepsy need to be admitted to hospital.
Prescribing data
Each prescription issued is recorded, and these data are collected and analysed by PHS as part of the data provided by the Prescribing Team. A limitation with regard to drawing conclusions about epilepsy is that the drugs used in epilepsy can be used for other conditions as well. Recent prescription data include patient identifiers that allow characteristics of patients to be linked to prescriptions.
Sudden unexplained death in epilepsy
Routine mortality data in Scotland do not provide information on sudden unexplained death in epilepsy (SUDEP). In 2013, SUDEP Action set up an epilepsy deaths register to record cases of SUDEP. A summary of the latest findings can be found here.
Other sources of data
Surveys provide useful information about the likely prevalence of epilepsy in Scotland. The review by Forsgren (2005) provides data on prevalence in European countries.
Please note: If you require the most up-to-date data available, please check the data sources directly as new data may have been published since these data pages were last updated. Although we endeavour to ensure that the data pages are kept up-to-date, there may be a time lag between new data being published and the relevant ScotPHO web pages being updated.
