We fight to improve the lives
of everyone affected by epilepsy

Warning message

This article was published in October 2008. The information may be out of date. Please check our epilepsy information or our site A-Z.

Living with epilepsy in England?

28 Oct 2008

We've done a survey of health trusts to find out about current services available for people with epilepsy. The results of this survey will be made available to individual health trusts to help inform them about any gaps in service provision. The results will also allow Epilepsy Action to assess epilepsy services available in different parts of the country.

These results will be presented in a full report which will be launched at the House of Commons on 14 January 2009.

Personal stories really help us back up the facts and figures.  We need your help to show how inadequate services impact on real people in their everyday lives.

Therefore, we need people living in England who have had any difficulties accessing epilepsy services in the last three years to take part in media interviews and to attend the launch event (you would need to be available in January).

We are ideally looking for:

  • anyone who saw a general neurologist, got the wrong treatment, but now sees an epilepsy specialist and is on the correct treatment, or
  • anyone who waited a long time to get diagnosed, and could have died, or had a major accident, or
  • anyone who didn’t previously see an epilepsy specialist nurse but now sees one and can talk about the difference this makes, or
  • anyone who has a care plan, or
  • anyone who has been 'lost' between paediatric and adult services – for example, it took ages for them to get an adult appointment.

If you don't fit any of the above but have a similar story to tell, we would still be interested to hear from you. As well as people to take part in interviews, we also need quotes and case studies to feature in the report (this could be done anonymously if required).


Updated 1 April 2009: The results of the mapping survey have formed the 'Epilepsy in England: time for change' report.

There are no comments yet. Be the first to comment...

Question about your epilepsy?

Your question will be sent to our helpline advisors.

Have a comment about this page?

All comments are reviewed by a moderator before publishing. Comments will be edited or deleted if they are offensive, libellous, slanderous, abusive, commercial or irrelevant.

We ask for your email when you make a comment through this website. This means that we can let you know directly that we have replied to you. By making a comment through the website, you allow us to use the comment in our publicity without using your name. If we would like to use your name, we will email you to get your permission.

The content of this field is kept private and will not be shown publicly.
This question is for testing whether you are a human visitor and to prevent automated spam submissions.
1 + 0 =
Solve this simple math problem and enter the result. E.g. for 1+3, enter 4.