SUDEP Action

Making every epilepsy death count
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Online Epilepsy Memorial Day 2020

When I light a candle for Online Epilepsy Memorial Day I will think of Alan, my first partner, who died at 27 many years ago. I will think of Dame Stephanie Shirley’s poem and know that Alan, a man as keen on nature as on justice, remains with me in the essence of life. This week would have been his birthday. When the birds seem to be singing more loudly than ever, let's remember together and pay tribute together to the people we love whose lives were cut short. For those in the very deepest grief at this time we hope our lighted candles will show we are always by your side.


At a time when our bereavement traditions have been disrupted, we have a special hope that our Online Epilepsy Memorial Day will bring comfort to all people who are grieving.

Throughout the COVID-19 pandemic, the charity, with twenty-five years of experience working with trauma, has been responding to additional needs from the suddenly bereaved as they face not only the grief that follows any sudden death, but so much more as the indirect impacts of COVID-19 widen inequalities and injustices. The hidden private and public burden falls especially heavily on bereaved families.  

21 people with epilepsy die suddenly each week in the UK. Typically, parents and families find a loved one who has unexpectedly died, often at home during the night. Most deaths are in people who are otherwise well (those between 20-40 are most at risk). 

Online Epilepsy Memorial Day is part of a range of services and projects the charity provides to fill a painful gap in epilepsy and risk and traumatic sudden bereavement. Before COVID-19, grieving families had worked with NHS clinicians to innovate safety tools, recognised in January 2020 as national best practice by NHS RightCare.

During the COVID-19 pandemic, the charity is conducting research on the impact of COVID-19 and is urging Government to help ensure that people with epilepsy continue to seek and access medical help; do what they can to encourage the SUDEP and Seizure Safety Checklist Safety Tool to be used to review epilepsy risks, and to resume an appropriate level of public service for people with epilepsy and the bereaved so that lives can be saved.

Take care, stay safe & remember SUDEP Action are always by your side

Jane Hanna OBE,


For more information:

Find out more about Online Epilepsy Memorial Day 2020 and how to take part

Prevent21 Campaign - preventing epilepsy deaths

If you want to know more about epilepsy safety and managing risks, visit our information pages or contact us on [email protected]

If you have been affected by an epilepsy death, please contact the SUDEP Action support team on 01235 772852 or [email protected]