SUDEP Action

Making every epilepsy death count
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National Epilepsy Week 2021 (24-30 May)

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National Epilepsy Week is an annual event where the epilepsy community comes together to raise awareness about what living with epilepsy is like. But this year, like the last, remains very different. Things are starting to return to ‘normal’ as we move #BeyondCOVID, but many things have also changed dramatically for people with epilepsy, their clinicians/services, their families and for those bereaved suddenly by the condition.

Our Lives Cut Short report showed that epilepsy services have been dramatically affected by the pandemic, clinicians have been working elsewhere despite wishing to continue supporting their epilepsy patients, virtual appointments are now part of epilepsy care, and in some places waiting lists to see an epilepsy specialist have increased and face delays.

People with epilepsy and their families have faced rising epilepsy risks, as life changed significantly and access to health services became trickier. The issues people faced about getting support for their epilepsy before the pandemic, in some areas has worsened even further. We fear more will have died during this time and that the figure is now more than 21 epilepsy deaths a week.

And those bereaved by epilepsy have lost so many opportunities for support with their grief, facing isolation, delays with inquests and investigations, and complications, making losing a loved one that much harder than it already is. Our specialist support service has seen a nearly 40% increase in contact.   

This year, epilepsy organisations will be looking #BeyondCOVID to highlight what that means for themselves and the people they support – in the hope of raising wider awareness among the public and making a difference to the epilepsy community.

For SUDEP Action, National Epilepsy Week has always been an opportunity to show what can be done NOW to help people with epilepsy (with the support of their families and clinicians) to live more safely and knowledgeably with the condition. Learning about the risks, including SUDEP, and using tools like the Checklist and EpSMon app to help - so they can take control over their lives and put steps in place to live well.

Research has shown time and time again, that there are actions which can happen now, which could help save lives now – if the support for them is there. Your support for our work, in whatever way you are able to give it, really could make all the difference as we stand together to help prevent epilepsy deaths. This is even more important, as we fear epilepsy deaths are rising and we know that epilepsy risks and access to services are worsening. One more life lost, is one more too many.

But as always, it is also a week tinged with sadness, as we hold in our hearts those who have sadly died far too soon because of the condition. We treasure each and every story and photo of those who have died that are shared with us – and we carry them with us in our fight to improve risk awareness and communication in their memory; making sure every epilepsy death counts.

This week we will be sharing our seven ‘S’s’ with you as we take part in #NationalEpilepsyWeek to look ahead and #BeyondCOVID. Focusing on:

Seeking knowledge

Sharing stories

Supporting others

SUDEP Action

Safety and Saving lives

Strengthening voices

We hope that wherever you are in the world, whether you are bereaved, living with epilepsy, a clinician or someone interested in what we do – that you’ll share our posts, comment on them with you stories, thoughts and feedback, and get involved in helping us raise awareness in any way that you can.
Together we really are stronger, and no matter what, we are always by your side.


Further information:

Prevent21 Campaign - national campaign on preventing epilepsy deaths

Lives Cut Short Report (Nov 2020)

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]