SUDEP Action

Making every epilepsy death count
Call us now on 01235 772850

Do friends and family hold further key information?

The Epilepsy Deaths Register launched in March 2013, since then it has received over 300 reports.  We are amazed at the response and it clearly shows the need for such a register.

To help prevent future epilepsy deaths, we need to find out what happened in as many cases as possible and wonder if other family members and friends could be encouraged to go on-line and complete the questionnaire too. These reporters may have additional information that you were unaware of and it is also useful for researchers to understand the effect on the whole family or on the wider community.

If you are considering reporting an epilepsy related death you should definitely do it. Filling in the form was easy. We cannot do anything to help our loved ones now, but with greater knowledge and understanding from data gathered you just may be able to make a difference to the life of someone dealing with epilepsy now. I know my sister would have wanted that.” Bereaved sibling.

“We had never heard of SUDEP until we saw it on our son’s death certificate. We think more research is needed into epilepsy deaths.  You have nothing to lose filling in the deaths register, and although it will not bring a loved one back, it could save someone else suffering in the same way.” Bereaved parents.

Anyone can report a death no matter who you are as long as you are over 18.   This includes relatives, friend, doctors, nurses, carers, social workers, coroners, procurator fiscal or pathologist. 

The Epilepsy Deaths Register is recording details of any death in someone with epilepsy.  This includes deaths related or suspected to be SUDEP and any sudden death in someone with evidence of a seizure that cannot be explained.  You can also report accidental deaths in people with epilepsy or deaths reported as cause unknown in people with epilepsy.

Our Epilepsy Deaths Registry team has over 50 years’ combined expertise in epilepsy deaths.  Research support is provided by Dr Henry Smithson and his research team at Sheffield University and By Kings Health Partners. 

The Epilepsy Deaths Register team provides support through the registration process and will help you with any aspect of the register form.  Please contact The Epilepsy Deaths Register team on:  

Tel: 0330 088 1220 (local rate)    Email: [email protected]

The information you provide is vital although answering some of the questions may be difficult with emotions surfacing quite unexpectedly, in such circumstances it may help to talk.  Please remember the SUDEP Action support line is there for you:  01235 772852