International journal publishes UK research on tackling epilepsy deaths

Key research from SUDEP Action’s landmark Prevent21 Summit, has been published in a leading international epilepsy journal, Epilepsy and Behavior – sharing expertise and recommendations from the event with clinicians and researchers worldwide. 

The special supplement ‘Prevent21 Summit – Time to Listen. Epilepsy Mortality; Consequences and Solutions’ contains 12 papers highlighting key research on what is, and can be done, to prevent future epilepsy-related deaths, as well as what is needed to better support those bereaved by epilepsy in the aftermath of a death. Each research paper has been written by leading experts who participated in the first Prevent 21 Summit, including SUDEP Action’s very own Jane Hanna OBE, Karen Osland, Sammy Ashby, Tracy Cowdry and Julia Stirling. 

The Prevent21 Summit was held in Oxford in November 2018. 71 specialists in epilepsy, neurology, bereavement, health services, policy making, and the justice system attended the event; representing 43 different organisations. All working together to agree on recommendations and actions needed to prevent future epilepsy deaths. 

Many clinicians and researchers have access to medical papers and journals as part of their role, or access can also be purchased. However, at SUDEP Action we know many of our supporters may be interested in this supplement, so here is the Executive Summary for free; written by SUDEP Action CEO Jane Hanna OBE – which gives an overview of the Summit and the research papers in the Journal supplement. 

Jane Hanna OBE, CEO SUDEP Action commented, “This is a very important outcome from our Prevent21 Summit – it is costly to submit research papers to journals, so to have the support of Epilepsy & Behavior for a special supplement on the Summit event is wonderful. It means the work of SUDEP Action and research from leading clinicians and researchers, has a platform to reach even more people worldwide. Helping influence future actions and in the hope of supporting changes which could save lives in future.”

The reports contained in the supplement are:
[1] Cowdry T, Stirling J. - Learnings from supporting traumatic grief in the aftermath of sudden epilepsy deaths. Epilepsy & Behavior 2019, Prevent21: SUDEP Summit

[2] Thomas R, Osland K. - Learnings from deaths: The Epilepsy Deaths Register. Epilepsy & Behavior 2019, Prevent21: SUDEP Summit 

[3] Thomas R, Leach JP, Craig D. - The view of the clinician and the scientist on the family experience of sudden epilepsy deaths. Epilepsy & Behavior 2019, Prevent21: SUDEP Summit 

[4] Panelli R. - SUDEP: a global perspective. Epilepsy & Behavior 2019, Prevent21: SUDEP Summit 

[5] Dunkley C, Abdel-Mannan O, Hughes E. - Epilepsy deaths in children: improvements driven by data and surveillance in paediatrics. Epilepsy & Behavior 2019, Prevent21: SUDEP Summit

[6] Cock H, Morrish P, Duncan S. - Learning from health service delivery and trying to reduce risk. Epilepsy & Behavior 2019, Prevent21: SUDEP Summit 

[7] Kerr M, Pickrell O. - SUDEP and mortality in epilepsy:  the role of routinely-collected healthcare data, registries and health inequalities. Epilepsy & Behavior 2019, Prevent21: SUDEP Summit

[8] Rugg-Gunn F. - The role of devices in managing risk. Epilepsy & Behavior 2019, Prevent21: SUDEP Summit 

[9] Shankar R, Ashby S, McLean B, Newman C. - Bridging the gap of risk communication and management using the SUDEP and Seizure Safety Checklist. Epilepsy & Behavior 2019, Prevent21: SUDEP Summit 

[10] Newman C, Ashby S, Shankar R, McLean B. - Improving epilepsy management with EpSMon: A Templar to highlight the multifaceted challenges of incorporating digital technologies into routine clinical practice. Epilepsy & Behavior 2019, Prevent21: SUDEP Summit

[11] Morley K. - Reducing risks for pregnant women with epilepsy: a qualitative study exploring experiences of using a toolkit at the antenatal booking appointment. Epilepsy & Behavior 2019, Prevent21: SUDEP Summit 

This Supplement is just one outcome from the Prevent21 Summit on tackling epilepsy deaths, and we still have much more work to do. You can read more about the 2018 Summit, its outcomes and recommendations in the below report -

SUDEP Action Prevent21 Summit Report 2018 - Outcomes & Recommendations