Why Ireland Needs a National Strategy on SUDEP
Epilepsy Ireland has called for a coordinated national strategy to reduce sudden unexplained death in epilepsy (SUDEP) in Ireland. With an estimated 33 people dying annually from SUDEP and thousands living with epilepsy, a strategic approach could save lives, improve awareness, and ensure better support for families affected by these losses.
SUDEP occurs when a person with epilepsy dies and no other cause is found after post-mortem examination. While the exact cause remains unknown, researchers have identified risk factors that heighten the chances of SUDEP. Addressing these factors through a national framework could help healthcare professionals, patients, and families manage risk more effectively.
Understanding the Scale and Impact
In Ireland, over 45,000 people live with epilepsy, with an estimated 10,000–15,000 experiencing uncontrolled seizures. This reality underscores the urgency of a national plan that targets prevention, early intervention, and post-incident support. A national strategy would not only aim to reduce mortality but also to improve quality of life for those living with epilepsy and their loved ones.
Known Risk Factors and Modifiable Steps
Current evidence highlights several factors associated with higher SUDEP risk: frequent seizures, non-adherence to medication, and alcohol or substance misuse. While some elements are beyond immediate control, multiple actionable steps can mitigate risk. These include improving seizure control through access to specialty care, enhancing medication adherence through patient education and reminders, and promoting safer lifestyles in collaboration with healthcare providers and community services.
A national strategy would promote routine risk assessment, patient-centered counseling, and the integration of SUDEP awareness into standard epilepsy care across primary, secondary, and tertiary services. This approach helps ensure that high-risk individuals receive preventive guidance early and consistently.
What a National Strategy Could Look Like
Effective national strategies typically combine policy alignment, resource allocation, clinician education, and public awareness. For SUDEP, key components might include:
- Clear national guidelines for risk assessment and management in epilepsy care.
- Dedicated funding for epilepsy research, patient education, and community support programs.
- Training for clinicians on recognizing SUDEP risk and communicating risks empathetically to patients and families.
- Public awareness campaigns to reduce stigma and encourage proactive health management.
- Data collection and surveillance to monitor SUDEP incidence and evaluate prevention efforts.
- Robust caregiver and bereavement support for families affected by SUDEP.
Epilepsy Ireland is urging the Government and all Oireachtas members to back a formal strategy, signaling a commitment to prevention and compassionate care for those affected by epilepsy. A unified approach can foster collaboration among hospitals, general practitioners, researchers, and patient organizations.
A Role for Epilepsy Ireland and Stakeholders
As the national patient organisation representing people with epilepsy and their families, Epilepsy Ireland is positioned to lead advocacy, education, and community-based initiatives. The organization emphasizes the need for a sustained dialogue with policymakers to translate research findings into practical, life-saving actions. By mobilising resources and raising public awareness, Epilepsy Ireland aims to reduce SUDEP mortality and improve overall epilepsy management in Ireland.
What This Means for Individuals and Families
For individuals living with epilepsy, a national strategy promises clearer guidance on staying safe, differentiating between well-managed and high-risk scenarios, and accessing supports that improve seizure control. Families would benefit from better risk information, timely clinical follow-up, and emotional support during difficult times. Politically, robust policy can drive sustained investment, research, and community services essential to reducing SUDEP risk.
Looking Ahead
The call for a national strategy reflects a commitment to saving lives and empowering people with epilepsy. With more than 45,000 people affected in Ireland, a strategic plan is not only prudent—it is essential. Epilepsy Ireland remains hopeful that Government and all elected representatives will respond with urgency and collaborate with patients, clinicians, and researchers to build a safer, more informed future for everyone touched by epilepsy.
