SUDEP Action

Making every epilepsy death count
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Epilepsy Bereavement and COVID-19 Survey

Understanding how COVID-19 is impacting on people bereaved by epilepsy

Complete the survey here

If you are interested in this survey, it may be that you have experienced an epilepsy-related death. You may be recently bereaved, or you may have been bereaved some time ago, and you may be looking for a way to share your experiences to help others.

The recent COVID-19 (Coronavirus) pandemic is having a significant impact on the way in which we all live our lives, as well as on our wellbeing. As the pandemic takes over the media, Government, services, and put restrictions on us because of the lockdown – these changes can have a serious impact on grief and bereavement. 

We know that these uncertain times are impacting on people who have lost a loved one to epilepsy in very different ways. And those who have not been bereaved by epilepsy simply may not understand the impact the COVID-19 pandemic is having on you.

This research aims to better understand your experiences, so SUDEP Action (in collaboration with the Epilepsy Deaths Register and Newcastle University), can shine a light on this issue both nationally & internationally, so we can help others who have also been bereaved, both during the COVID-19 pandemic and in future.

Your voice is important and needs to be heard

Who can help

Anyone over 18 who has been bereaved by epilepsy, it doesn’t matter if you are newly bereaved, or if you have been bereaved for some time. This survey is open to people both in the UK and internationally. You can help this research even if:

  • the death was suspected to be epilepsy-related, 
  • epilepsy wasn’t stated as the cause of death,
  • or if the inquest is still ongoing.

The power of this research increases with every person who gets involved, all information received is valuable

All information collected through this questionnaire is anonymised and no identifiable information will be used in any reports produced. If you cannot complete the survey online, or would like help to get involved, please contact us via: [email protected] or call us on 0330 088 1220. 

If you have submitted your data to the Epilepsy Deaths Register already, please note that there may be some duplicate questions within this project as it is an independent project and all participant data is anonymous. If you have not submitted data about an epilepsy-related death to the Epilepsy Deaths Register, please consider doing so as well. 

Complete the survey here

Why is it important to understand the impact of COVID-19 on people bereaved by epilepsy?

We know when people are bereaved by epilepsy that people feel isolated and that no one truly understands. The COVID-19 pandemic, for some, has made this isolation even greater – impacting on wellbeing, mental health, relationships, day to day lives, coping strategies and how they’re able to remember their loved one.

Your experiences are important and help us evidence the fight for change

The more voices we gather, the more stories we can share – presents a wider and more accurate picture of our bereaved community and what they experience after an epilepsy-related death. Your voice is important and needs to be heard. It needs to be heard by the health professions, policy-makers, and Government, to help them understand that urgent action needs to be taken so that future lives can be saved.

Understanding how things are affecting you, and how the COVID-19 pandemic has impacted on your grief, will help us to:

  • improve services and identify gaps where things could be made better,
  • learn how we can support you even more during these uncertain times
  • make a difference and help others who are also bereaved by epilepsy.

The findings of this research will help others who are in a similar situation – helping them to feel less alone.

Every epilepsy death does count, and the lives of the people left behind matter, so please add your voice and help us to be heard


Further information:

If you have questions or concerns about the project, please contact us via: [email protected] or call us on 0330 088 1220

For free specialist bereavement support please see here.

Want to do more?
If you have not done so already, please consider supporting the Epilepsy Deaths Register (EDR) project – The EDR is the largest and most powerful collection of information on epilepsy deaths in the world aimed at reducing epilepsy deaths and improving outcomes for people with epilepsy and their families in the future. Sharing information by reporting to the EDR helps research teams carry out new research, which could help learn lessons from those who have died, in the hope of also saving future lives

Create a lasting memorial to your loved one via our Much loved tribute pages.
Or share your story with SUDEP Action, to raise awareness and help others.