SUDEP Action

Making every epilepsy death count
Call us now on 01235 772850

Fourteen Organisations sign up for Call for Openness on SUDEP Campaign


Fourteen organisations have signed up for the Call for Openness on Sudden Unexpected Death in Epilepsy (SUDEP) Campaign led by SUDEP Action’s Jane Hanna OBE. The campaign calls for a common sense approach to alert people at risk to ways to reduce their risk of SUDEP.

The campaign was launched at the 30th International Epilepsy Congress on 25 June 2013 in Montreal, Canada.  At the same event Jane received the joint International Bureau for Epilepsy and International League Against Epilepsy Global Impact Award on Epilepsy for her work on SUDEP over the past 22 years.  Jane and Mike Glynn, President of the International Bureau for Epilepsy (IBE), led the call for openness on SUDEP.

The campaign promotes a common sense approach of informing people at risk of ways they can reduce their risk of SUDEP.  One way is to minimise the risk of seizures with good medical management and patient education. Disclosure can help them to understand the importance of accurately reporting their seizures, take their medication as prescribed and make lifestyle choices with seizure trigger minimisation in mind.  Openness can also help reassure people who may have heard about SUDEP that in fact they have a very positive prognosis.

SUDEP Action hopes more organisations will sign up and support the call for openness globally.  Jane outlined the importance of the Call for Openness stating: “Many of the deaths are in the young, putting epilepsy in some countries in the top ten of all causes of early mortality.  In 1990, when my partner died out of the blue, aged 27, SUDEP was not recognised except by a handful of researchers.  The world is a very different place today.  Risk factors for SUDEP are being identified, and strategies to confront them are being formulated.  Although research is urgently needed to advance prevention, we do now have important information for people about what they can do to reduce risk.”  There is clear evidence today that generalised-tonic seizures are the main risk factor for sudden death in people with epilepsy.

Support for early information on SUDEP for patients has grown since the first national clinical guidelines encouraging openness with patients were developed in the UK in 2004 and the UK, Australia and Canada combined forces in spreading awareness through a SUDEP Global Conversation campaign.  Since then a National Institute for Neurological Disorders and Stroke (NINDS) workshop in the US, the inaugural meeting of Partners Against Mortality in Epilepsy (PAME) and a judicial enquiry in Scotland have recommended the education of all people with epilepsy about SUDEP.

Current practice, however, suggests most patients are not informed about SUDEP.  All those backing the call for openness recognise that people with epilepsy may well respond like all other patients who receive difficult news about their condition and become temporarily anxious, but that information should only be withheld if patients are likely to suffer harm.

The fourteen organisations that have signed up for the Call for Openness so far from 11 countries include: SUDEP Action, Epilepsy Action, Epilepsy Society, Mathews Friends, SUDEP Aware, Epilepsy Australia, Epilepsy Ireland, Citizens United for Research in Epilepsy, Epilepsy Foundation SUDEP Institute (US), Epilepsy France, Austrian Epilepsy Association, Swedish Epilepsy Association, Epilepsy New Zealand, Epilepsy Association of Zambia and Gambia Epilepsy Association.