helpline 01494 601 400

Speak up for epilepsy


Thank you for joining our fight and speaking up for epilepsy

Over March 2016 we launched a campaign to speak up for epilepsy and end avoidable deaths. Our supporters sent 2,000 emails to a total of 516 MPs around the UK.

Thank you to everyone who spoke up for epilepsy and emailed their MP

Our fight to end premature deaths in epilepsy

New research has reinforced the strong link between epilepsy and premature deaths. Watch our campaign video to find out more.

"Speak up" campaign makes it's mark on Westminster

Our policy advisor Finn O'Dwyer explains why he feels encouraged by the response from our campaign but still thinks more should be done by our Government.

Heatmap of supporters based on where they emailed their MPs

We saw the most amount of emails sent to MPs in the north of England including Newcastle, Manchester and Sheffield. 

Our campaign has raised awareness of the 39 per cent of epilepsy deaths that could be avoided with better access to care, and of the large variation in outcomes for people with epilepsy across England. It is clear that these uncomfortable facts have struck a nerve in Westminster, so we must continue to seek the vital information that will help eliminate avoidable deaths and create an effective and efficient health service for people with epilepsy that is truly national. 


Kerry Pates was just 19 years old when she died of SUDEP

This video features Karen and Kevin Pates discussing the loss of their happy, go-lucky girl. Given the subject matter of the interview some viewers may find the video upsetting.


Good seizure control can reduce risk, especially for convulsive seizures.

Statistics about risk are helpful but don't show your individual risks. These depend on your epilepsy, lifestyle, other conditions and factors, like age and sex.

We're here to help

To talk about concerns around epilepsy and premature mortality, please call the Epilepsy Society helpline on 01494 601 400. Epilepsy deaths are not common but do happen, and while not all deaths are avoidable, some are. SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths. They are the only UK charity specialised in supporting and involving people bereaved by epilepsy. If you have been affected by an epilepsy death please contact the SUDEP Action support team on 01235 772852. 

A donation, no matter how large or small can help us to change lives.