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logo01The Joint Epilepsy Council of the UK and Ireland The Joint Epilepsy Council is the umbrella charity providing the representative voice working for the benefit of people affected by epilepsy.

Introduction

The Joint Epilepsy Council (JEC) first produced nationally recognised incidence and prevalence  figures in 2005. These figures have been reviewed and updated and show a large rise in the  number of people with a diagnosis of epilepsy and a prescription for anti-epileptic drugs. It is  suggested that this rise is due to a combination of four reasons:

  • Greater attention to recording and monitoring people with epilepsy due to initiatives  such as the GP Quality and Outcomes Framework.
  • The introduction and implementation of the NICE and SIGN clinical guidelines.
  • The ageing population and the higher incidence of epilepsy in later life.
  • The general population increase.

It is acknowledged that an exact figure for the number of people with epilepsy is difficult to  produce due to complicating factors such as misdiagnosis rates, inconsistent reporting, variationsn in the definition for active epilepsy and anti-epileptic drugs (AEDs) being prescribed for other conditions.

A variety of sources were reviewed in the production of these data including, in particular,  the General Practice Research Database (GPRD) Data sets, Quality and Outcomes  Framework prevalence data and NHS Information Centre for Health and Social Care and the  IMS Health Disease Analyzer.

The prevalence and incidence figures used in this report are based on an analysis of GPRD  data commissioned by the Joint Epilepsy Council applied to the Office of National Statistics  (ONS) mid-year population estimates 20101  (see methodology).

The prevalence figures are based on patients with a diagnosis of epilepsy along with a  current prescription of AEDs. Incidence figures are based on a new diagnosis of epilepsy and  a new prescription for AEDs.

The numbers do not therefore include patients with epilepsy who are not receiving AED  treatment, for whatever reason. In addition, although we recognise the high rate of  misdiagnosing of other conditions as epilepsy, these data have not been validated for the  accuracy of the diagnosis. The data may therefore include a significant number of people (20- 30%) who have been given a diagnosis of epilepsy and a prescription for AEDs but do not in  fact have epilepsy.

Nevertheless these data are important and useful despite these limitations; health services  social services and education organisations have to design and provide support services for  people with epilepsy based on the population with that diagnosis undergoing treatment.

The Joint Epilepsy Council believes that the figure of approximately 600,000 people in the  UK with a diagnosis of epilepsy and receiving AED treatment is the best and most accurate estimate currently available.

These data are intended to provide an open and consistent approach to epilepsy statistics and members are encouraged to use the information within their own work.