Re: Avoiding premature death in epilepsy
SUDEP Action welcomes this editorial. In 2002 an editorial in the Lancet called for interventions using current knowledge and available therapeutic options as a strategy to cut epilepsy deaths (1). It followed the National Sentinel Clinical Audit of Epilepsy-Related Death report in 2002 which found that 42% of epilepsy deaths were potentially avoidable (2). There have been national guidelines and standards for epilepsy since then but investment in a community-based intervention is urgently needed.
SUDEP Action is the voice of over a thousand bereaved families across the UK and has worked to prevent deaths since founding in 1996 (3). The charity funded the 2010 pilot study and the english study in 2013 that are highlighted in this editorial. In the last ten years there have been have recommendations from national investigations into epilepsy-related maternal and child deaths and Fatal Accident Inquiries into individual deaths (4). All of these highlight the need for better risk management in epilepsy.
In the US the government has recently invested $5.9 billion into researching Sudden Unexpected Death in Epilepsy. The UK is uniquely placed because of our national health service to develop a relatively simple intervention to cut epilepsy death rates. Many of the people who are at risk of dying will also share a risk profile for patients attending Accident and Emergency departments. This editorial brings to attention a huge opportunity to develop an intervention to improve management of epilepsy in the community and make life safer for people with epilepsy. Saving lives will also mean we begin to reduce the traumatic impact of these deaths on families and on society.
1) Pedley T, Hauser W.A. Sudden death in epilepsy: a wake-up call for management. The Lancet May 21, 2002 http://image.thelancet.com/extras/02cmt85web.pdf 2
2) Hanna J, Black N, Sander J, Smithson H, Appleton R, Brown S, et al. National Sentinel Clinical Audit of Epilepsy-Related Death: Epilepsy - Death in the Shadows. Norwich: The Stationery Office; 2002. Available from www.sudep.org
3) Hanna J & Leach J-P. UK: looking ahead. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation. Published online SUDEP Action, SUDEP Aware & Epilepsy Australia; 5th December 2014 . Available from: www.sudepglobalconversation.com.
Competing interests: SUDEP Action has collaborated with and funded research by LR