Living with epilepsy in England?

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).

Thanks.

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