SUDEP Action highlights UK’s EpSMon and the SUDEP and Seizure Safety Checklist at the American Epilepsy Society

SUDEP Action is highlighting EpSMon the new Epilepsy Self Monitor App and the SUDEP and Seizure Safety Checklist at the American Epilepsy Society Annual Meeting in Philadelphia. The meeting is attended by around 5000 health professionals and runs from 4 to 8 December.

The SUDEP & Seizure Safety Checklist project was judged the top poster presentation at the 2015 International League Against Epilepsy annual scientific meeting in London. The Checklist is a tool developed for use by health professionals in clinic to help them and their patients work together to reduce health risks. It uses the latest research into known risks for epilepsy deaths and SUDEP to prompt doctors or nurses to ask a series of questions to the person with epilepsy so that a treatment plan can take account of risk.  

EpSMon, is a digital version of the Checklist developed for use by people with epilepsy. The App was a finalist at the 2015 National Health Service Journal Awards in the UK. EpSMon helps people monitor their own epilepsy by bringing life-saving knowledge to their fingertips and assists health professionals to monitor and discuss epilepsy risks and well-being with their patients. 

Dr Rosey Panelli, SUDEP Action’s International Research Officer and representative at the AES meeting said: “it is exciting to present these new tools at the AES meeting and to show that our understanding of risk is finally being translated into tools for preventative action which might reduce  epilepsy-related deaths.”

Jane Hanna, CEO of SUDEP Action said: “The last time we were represented at this large north american meeting was in 1998 and this was to bring news of our international workshop which looked at defining SUDEP and called for urgent action.  It is wonderful in 2015 to be back again with our new safety tools. I would like to thank not only Rosey, but Professor Mike Kerr, SUDEP Action Board member and Vivek Dattani, a SUDEP Action volunteer who both used  their time in the US to come and help”

EpSMon was created by a team of partners based at Plymouth University; Cornwall Foundation NHS Trust; Royal Cornwall Hospital and SUDEP Action. The Checklist Project was part sponsored by SUDEP Action helped by Kt’s Fund, a community fund set up in memory of Katie Hallet, a 20-year children’s nursing student who died from SUDEP in January 2006.

SUDEP Action is also highlighting SUDEP - The Global Conversation and The Epilepsy Deaths Register (EDR) at the AES meeting. The EDR works with international partners to tackle Sudden Unexpected Death in Epilepsy (SUDEP) and other epilepsy-related deaths. The EDR is an already has around 400 registrations from bereaved families. Professionals can also get copies of our new risk reduction leaflets for people with epilepsy and learning disabilities.