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.
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.