Why Ireland Needs a National SUDEP Strategy
Epilepsy Ireland, the national patient organisation representing people with epilepsy and their families, is calling for a comprehensive national strategy to reduce the incidence of sudden unexplained death in epilepsy (SUDEP). Current research indicates around 33 people die each year in Ireland due to SUDEP, with many victims young and otherwise healthy. A coordinated, government-wide approach could save lives by boosting awareness, improving prevention, and ensuring consistent care for people living with epilepsy.
Understanding SUDEP and Its Risk Factors
SUDEP is confirmed when a person with epilepsy dies and no other cause of death can be found during the post-mortem examination. While the exact cause remains unknown, researchers have identified several factors that can increase an individual’s risk. These include having frequent seizures, not taking prescribed medication, and issues related to alcohol or substance misuse. While not all seizures can be prevented, managing these risk factors through better treatment adherence and lifestyle support can reduce the likelihood of SUDEP for many people.
Current Stats and the Irish Context
Across Ireland, more than 45,000 people live with epilepsy, with 10,000–15,000 experiencing uncontrolled seizures. This reality underscores the need for a national framework to coordinate efforts across healthcare providers, researchers, and patient organisations. A national strategy would align policies, funding, and public health messaging to ensure that people with epilepsy receive consistent, high-quality care and information on how to reduce SUDEP risk.
What a National Strategy Could Include
A robust, multi-faceted approach could incorporate:
- Public awareness campaigns to educate people with epilepsy, families, and communities about SUDEP risk factors and prevention strategies.
- Training for healthcare professionals on early identification of high-risk patients, seizure control optimization, and medication adherence support.
- Improved access to epilepsy specialists, reliable seizure monitoring, and support services that help maintain consistent medication use.
- Community-based programs that address lifestyle factors, such as alcohol use and sleep hygiene, which can influence seizure control.
- Data collection and research funding to monitor SUDEP incidence, evaluate prevention efforts, and refine risk reduction strategies.
What Epilepsy Ireland is Asking From Government and Oireachtas Members
Epilepsy Ireland has appealed to the Irish Government and all members of the Oireachtas to help turn this vision into reality. A national strategy would require political leadership, cross-department collaboration, and sustained investment in education, clinical care, and research—areas where improved coordination could translate into fewer SUDEP deaths and better outcomes for people living with epilepsy.
How the Public Can Support This Effort
Public support for a national SUDEP strategy can take many forms: endorsing policy proposals, participating in awareness campaigns, supporting epilepsy services, and encouraging healthcare providers to prioritise adherence and comprehensive seizure management. By working together, stakeholders can reduce risk factors and empower people with epilepsy to lead safer, healthier lives.
Moving Forward
The call for a national strategy reflects a clear wish from people with epilepsy and their families for coordinated, evidence-based action. As research continues, the imperative remains to translate knowledge into practical, life-saving policies and services. Epilepsy Ireland remains committed to advocating for those affected and to guiding the public conversation toward a safer future for people living with epilepsy in Ireland.
