With an estimated 130 epilepsy-related deaths in Ireland every year, we believe a National Strategy to reduce these numbers must be developed and implemented.
Why?
With an Epilepsy Ireland supported study (to be published imminently) providing the true picture of the incidence of epilepsy-related deaths and deaths due to SUDEP in Ireland, this work must be acted on and targeted action and efforts must be taken to reduce these numbers.
EI surveys have also shown that there is sporadic and sub-optimal communication on SUDEP and risks between HCPs and patients.
Much of the work and developments in relation to epilepsy risk and SUDEP prevention in Ireland have been led by Epilepsy Ireland because of the fundraising efforts of bereaved families who have lost a loved one due to SUDEP or an epilepsy-related death.
Often those who are bereaved by SUDEP will note how they were not aware of this aspect of epilepsy until after their loved one had passed. The time for co-ordinated action has now come, and Epilepsy Ireland cannot continue to act in isolation on this most serious issue.
By gathering representatives and expertise from all those involved in the care of people with epilepsy, and policy makers from state bodies such as the HSE and Department of Health, we believe we can put in place an action plan to reduce these numbers and prevent potentially avoidable deaths.
What will Epilepsy Ireland do?
Using the incidence figures from the EI supported study, we will campaign for the development of a SUDEP Stakeholder group appointed by the Minister for Health to develop a strategy to be implemented by the Epilepsy Clinical Care Programme.
Alignment with World Health Organisation IGAP on epilepsy and other neurological conditions
This campaign aligns with Strategic Objective 3 within this plan, which Ireland has committed to implementing. The strategic objective in full states:
Implement strategies for promotion and prevention.
Within this objective, a specific global aim is that countries should develop:
an action plan to end preventable deaths.
News Updates on this Issue
The below are some of the updates on this matter as it progressed and associated articles in the news section of our website and some associated press coverage where you can read more.
- October 2024 - RTÉ; Study finds there are 33 epilepsy-related deaths in Ireland each year
- October 2024 - RTÉ; Family share 'devastation' of epilepsy-related death
- October 2024 - Irish Independent; ‘It was devastating’ – grieving families urge awareness of condition that can cause death in epilepsy
- October 2024 - EI write to Minister of Health following publication of SUDEP incidence study
- October 2024 - Critical new study confirms Irish incidence of Sudden Unexpected Death in Epilepsy (SUDEP)
- October 2024 - Epilepsy Ireland funded study on incidence of SUDEP in Ireland published – SUDEP Action Day
- October 2023 - #SUDEPActionDay2023 - EI release findings of patient awareness of SUDEP in Ireland
- October 2022 - Reducing epilepsy-related deaths a public health priority – Epilepsy Ireland
- October 2020 - #SUDEPActionDay2020 - Epilepsy Ireland announce funding towards new study
- October 2020 - #SUDEPActionDay2020 - Epilepsy Ireland release findings of survey on SUDEP awareness
Further Information
Visit the ‘SUDEP’ page on our website to learn more about SUDEP, the known risks and what can be done to reduce them. If you have a lost a loved one who lived with epilepsy, please consider providing information about them to the Epilepsy Deaths Register for Ireland. By providing information to the register, this could provide vital clues to researchers on why a person with epilepsy has died, potentially leading to the prevention of future SUDEP and epilepsy-related deaths. Visit the Epilepsy Deaths Register for more information.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.