Following the publication of a new study which has established the incidence of SUDEP in Ireland for the first time, Epilepsy Ireland have written to the Minister for Health calling for the development of a state-led strategy to reduce the incidence of SUDEP and all epilepsy-related deaths.
The study has established the incidence rate of SUDEP as 1:1400 people with epilepsy each year – unfortunately equating to the loss of 33 people each year. The study is continuing its work and will go on to establish the total incidence of epilepsy-related deaths in Ireland each year. This will include deaths from SUDEP and deaths as a result of seizure-related injuries, drowning and status epilepticus. More on this new study can be found by visiting the ‘News’ section of our website.
In our correspondence to the Minister, we have highlighted that many initiatives around SUDEP communication and risk have come from Epilepsy Ireland in isolation – the vast majority of which have been made possible thanks to the fundraising efforts of bereaved families.
We have made the point to the Minister that with the publication of this vital new study – and with further research set to establish the true incidence of epilepsy-related deaths in Ireland – that this dependence on bereaved families to tackle this issue cannot continue.
We have stated to the Minister that 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.
Our correspondence to the Minister is available to read and download and full at the end of this article.
We have released our correspondence to the Minister to mark SUDEP Action Day 2024 and to coincide with the public release of the aforementioned incidence study. This marks the beginning of what we see as being a vital new advocacy campaign for Epilepsy Ireland, which we hope will lead to increased investment in epilepsy services and a reduction in lives lost to epilepsy. We look forward to the Minister’s response and will provide a further update regarding this on our website and social media channels.
In the meantime, we would appeal to all people with epilepsy and their families to please learn more about SUDEP as part of SUDEP Action Day 2024. You can do so by visiting the ‘SUDEP’ page on 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 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.
- Read personal stories of people who have been bereaved by SUDEP by visiting the 'SUDEP Action Day' page on our website.
- Visit the 'Advocacy' section page of our website for more on this new campaign to reduce SUDEP and epilepsy-related deaths.