In advance of SUDEP Action Day next Wednesday, we have written to all Oireachtas members seeking their support for our campaign calling for the development of a national strategy to reduce epilepsy-related deaths in Ireland.
In our correspondence, we have also asked Oireachtas members to show their support for SUDEP Action Day next week – to remember all those who have passed away from Sudden Unexpected Death in Epilepsy, and to help amplify our awareness message in communities across Ireland.
Our campaign to develop a national strategy to reduce epilepsy-related deaths was formally launched on SUDEP Action Day last year, when an Epilepsy Ireland supported study – led by Dr. Yvonne Langan, Consultant Clinical Neurophysiologist, St. James’s Hospital – established the incidence of SUDEP in Ireland in for the first time. The research revealed an incidence of 1:1,400, equating to the loss of 33 lives each year.
In conjunction with our contact with Oireachtas members, we have also issued targeted regional media statement to every county in the Republic of Ireland. In our statements, our Advocacy & Communications Manager, Paddy McGeoghegan has highlighted the importance of being aware of SUDEP – and why we need to see the development of a national strategy to reduce SUDEP and epilepsy-related deaths. Paddy commented:
Knowledge is power and unfortunately, SUDEP is something that many people with epilepsy and their families – and even healthcare professionals - do not know enough about. Unfortunately, in speaking with bereaved families, we often hear the devastating story that the first time they heard about SUDEP is when it is listed in their loved one’s death certificate.
This must change. We owe it to the families who’ve lost loved ones and those who’ve been lost to ensure that SUDEP is no longer a hidden tragedy. Awareness of the risk factors can save lives, as many of them are modifiable.
Throughout October, we will be sharing educational resources, personal testimonies, and expert insights to help the public and healthcare professionals better understand SUDEP and how to reduce risk. I would particularly appeal to everyone living with epilepsy and the families who support them to take a moment to learn more about SUDEP.
Speaking on the need for a national strategy, Paddy said:
Until now, most of the initiatives taken around SUDEP have been led by Epilepsy Ireland, often supported by the fundraising efforts of bereaved families. We cannot continue to work in isolation on this issue and depend solely on the fundraising efforts of bereaved families to drive action on reducing SUDEP and epilepsy-related deaths in Ireland.
We now have the data. We know the scale of the issue. What we need is action. We’re asking for leadership and a coordinated response involving the various arms of the state to prevent future deaths.
We invite anyone affected by SUDEP or any epilepsy-related death to share their experience and help us drive this change and we would also make a direct appeal to all Oireachtas members to help us make this a reality.
With our correspondence to Oireachtas members and local media statements now issued, we would greatly appreciate any assistance that our members, volunteers and supporters can give to helping to amplify our campaign – with a particular appeal to anyone who may have lost a loved one due to SUDEP or an epilepsy-related death.
We have prepared a short template which can be downloaded at the end of this article which can be amended as appropriate. You can also find contact details of your local Oireachtas members by visiting the ‘Houses of the Oireachtas’ website.
Should you receive a supportive reply, please forward this to Paddy at pmcgeoghegan@epilepsy.ie.
Thank you in advance for your support for this incredibly important campaign. In the meantime, we encourage all people with epilepsy and their families to please learn more about SUDEP.
You can learn more by visiting the ‘SUDEP’ section of our website, while two families who have lost loved ones due to SUDEP have also shared powerful personal stories highlighting the need for increased awareness of SUDEP. Both these stories can be found below:
- Read Lucy's story about the loss of her son Luke on our website for SUDEP Action Day 2025
- Read Margaret's story about the loss of her daughter Lisa on our website for SUDEP Action Day 2025
Finally, we have also published a video with Prof. Yvonne Langan speaking with our Advocacy & Communications Manager, Paddy McGeoghegan about her research that investigated the incidence of Sudden Unexpected Death in Epilepsy (SUDEP) in Ireland - as well as topics such as SUDEP communication, awareness and risk. The video first aired at our 2025 National Conference and is an excellent resource to help learn more about SUDEP from an expert working in the field. You can watch the video in full below:
Jazz Pharmaceuticals has provided a hands off unrestricted grant to help fund the production of this video as part of Epilepsy Ireland's campaign around SUDEP and SUDEP Action Day. Jazz have had no involvement or input into the content of the video.
If you need any information or support on your or your loved one’s journey with epilepsy, please do not hesitate to contact your local Community Resource Officer. Visit the ‘Our Local Service’ page on our website for details of your local Community Resource Officer.