SUDEP Action

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New project to reduce epilepsy risk in Ireland

 

SUDEP Action has begun work with Epilepsy Ireland to introduce the SUDEP and Seizure Safety Checklist to Ireland.

Developed by SUDEP Action and the Cornwall Partnership NHS Foundation Trust, the evidence-based Checklist has been widely integrated into the care of people with epilepsy in the UK since 2015. SUDEP Action is the only UK charity dedicated to the prevention of epilepsy-related deaths.

The Checklist supports clinicians discussing epilepsy risks with patients.

Research, reports and inquiries into epilepsy-related deaths have highlighted the importance of risk assessment and risk management in cutting avoidable deaths. A common theme through these reports is the lack of awareness and the underestimation of risk.

Launching this free resource in Ireland will help to ensure more effective, open communication between professionals and people with epilepsy and their families.

The project has been made possible thanks to the fundraising efforts of the Cycle for Shane team, who cycled from London to Achill in 2022 to raise funds for this development. Driving this project on were Margaret and Kevin Corrigan, whose son Shane died from SUDEP in 2018.

Epilepsy Ireland CEO Peter Murphy said: “We have a long and successful history of working in collaboration with SUDEP Action on initiatives such as the Epilepsy Deaths Register for Ireland and we are delighted to bring this renowned resource to Ireland for the first time. We are confident that the Checklist will be a critical tool in meeting identified needs by improving vital communication between patients and caregivers on what can often be a very difficult subject. Thank you to the Corrigan family for their incredible efforts which will leave a lasting legacy for the epilepsy community in Ireland.”

Introducing the checklist is an important action to address Epilepsy Ireland’s strategic aim to ‘advance strategies to reduce the risk and incidence of epilepsy deaths in Ireland’.

SUDEP Action is also collaborating with Epilepsy Ireland on refreshing information resources on SUDEP, as well as partnering to gather Irish datfor a new international study on health professional attitudes to SUDEP communications. This work marks a new chapter of continued collaboration.

SUDEP Action CEO Sammy Ashby said: “As a charity committed to doing all we can to prevent epilepsy deaths, it is heartening to see so many of our core values reflected within Epilepsy Ireland’s plans. We look forward to working together with our colleagues and friends in EI on this new piece of work, while continuing to collaborate on the many other joint objectives of our organisations.”

As a next step, Epilepsy Ireland and SUDEP Action will work to establish a development group to manage the introduction of the Checklist in Ireland which will include representatives from both organisations as well as clinicians. The group will also work closely with people with epilepsy, and those bereaved by epilepsy/SUDEP.

Sammy Ashby added: “On behalf of all involved, we would like to thank the family and friends of the late Shane Corrigan for making this renewed focus possible through their outstanding fundraising efforts.”

Cycling for Shane