We are pleased to confirm that we have been invited to meet with the Department of Health policy unit to discuss our calls to develop a National Strategy to reduce Sudden Unexpected Death in Epilepsy and other epilepsy-related deaths.
This is one of our key advocacy priorities and the invitation to meet the Department follows on from the publication of an Epilepsy Ireland supported study last year, which established the incidence of SUDEP in Ireland for the first time. The study found the incidence to be 1:1,400 – equating to 33 deaths due to SUDEP in Ireland each year. This study is continuing its work, and it is expected that it will conclude and confirm the incidence of total epilepsy-related deaths (SUDEP and deaths as a result of status epilepticus and seizure related drowning or injuries) in Ireland later in the summer.
In our correspondence to the then Minister for Health, Stephen Donnelly following the publication of the study, we highlighted the fact that many initiatives around SUDEP communication and risk have come from Epilepsy Ireland in isolation – with the vast majority being made possible thanks to the fundraising efforts of bereaved families.
We firmly believe that with co-ordinated State action to develop strategies to reduce the numbers identified, some deaths could potentially be preventable. For example, should a person with epilepsy have improved access to specialist care and treatment, this should in theory improve their chances of becoming seizure-free – thus reducing their risk of SUDEP and other epilepsy-related deaths.
We look forward to meeting with Department of Health Officials and hope that this meeting will mark the starting point of targeted action to reduce the numbers who are lost to SUDEP and other epilepsy-related deaths in Ireland each year.
We will provide further updates on this campaign on our website and social media channels. In the meantime, you can read more about this campaign by visiting the ‘Advocacy’ section of our website.
If you need any information or support around your or a loved one's epilepsy, please do not hesitate to get in touch with your local Community Resource Officer. You can find their details by visiting the 'Our Local Services' section of our website.
Further information
- Read more about the incidence study by visiting the 'News' section of our website
- Learn more about SUDEP by visiting the 'SUDEP' page on our website
- If you have lost a loved one who lived with epilepsy, please consider providing information to the Epilepsy Deaths Register for Ireland. Visit the Epilepsy Deaths Register for Ireland website to learn more about why this is important.