1. Sudden Unexpected Death in Epilepsy (SUDEP)
Charlie’s Story
Charlie Burns is described by his family as a typical ten year old boy, he was extremely intelligent, loved school, learning, reading and playing, and he was a cheeky chap with an absolute zest for life.
On the 7th October 2011 ten year old Charlie had his first seizure, he had been perfectly well and there had been no indications that there was anything wrong. This seizure was witnessed by his then 14 year old sister and both parents, and 999 called, the attending crew diagnosed, incorrectly, that Charlie had suffered a febrile convulsion. Even though it was Charlie’s first seizure, he was unfortunately not transferred onto the local Emergency Department.
Sudden Unexpected Death in Epilepsy (SUDEP)

3. What is SUDEP? Sudden, unexplained, witnessed or unwitnessed, non-traumatic and non-drowning death in people with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus in which most post-mortem examination does not reveal a toxicological or anatomic cause for death. Nashef (2014)

4. Facts and Figures
Approximately 50 million people worldwide have epilepsy
There are around 60,000 people with epilepsy in the UK
10,000 people present to hospital in England each year with an epileptic seizure
40,000 epilepsy related admissions to hospital

5. This equates to 3 people with epilepsy dying each day in the UK
Facts and Figures
Currently there are approximately 1,200 epilepsy deaths each year in the UK
This equates to 3 people with epilepsy dying each day in the UK
Around 50% of the epilepsy-related deaths are SUDEP
Sudden death is estimated to be nearly 20 times more likely in people with epilepsy than the general population
Epilepsy deaths are in the top 10 causes of premature mortality in the UK
Research in Cornwall, Shankar et.al (2014), identified that between 2004 – 2012, epilepsy deaths in this area, was that 80% who died suddenly hadn’t been in contact with specialist services in the year before their death, and in 90% of these there had been a deterioration in their condition in the 3 – 6 months prior to their death. One half had a history of alcohol misuse and a quarter had been taking drugs to treat depression or anxiety. The findings suggest that if these groups of people were engaged or re-engaged with the healthcare system, through identification of Emergency Departments (ED) admissions, Ambulance Service attendance, GP/Pharmacist due to lack of prescription compliance and the patient had been made aware of the importance of reducing their risks, there could have been potentially a different outcome for some of these cases.

7. Can we help prevent SUDEP with some ‘’Simple Steps’’?
Ensure that any person, regardless of age, is admitted to ED when they have had their first seizure, for further investigation
Ensure that any person with uncontrolled seizures is urgently referred to their GP/specialist epilepsy team
Ensure that patients are taking their anti-epileptic medication correctly and understand the importance of them doing so
Talk to patients and their families about SUDEP and potential ways of reducing risk, consider discussing EpSMon, a smartphone app – to help them understand & monitor their overall wellbeing, risks and any changes to their epilepsy. More information available at
Advise patients to attend regular medical reviews
EpSmon an app that monitors fitting patterns.

8. SUDEP Action
UK’s only charity specialized in supporting those bereaved by epilepsy
They employ generic counsellors, with an expertise in sudden death to council those bereaved by epilepsy as a key service
Dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths
They work with positive, supportive clinical teams around the UK and internationally to help the epilepsy community tackle SUDEP head on
Manage the Epilepsy Death Register ( )
Epilepsy death register is a endorsed by the government and promoted by professional and patient organisations around the UK to provide a single point for recording epilepsy related deaths, co-ordination and support of epilepsy death research. Anyone involved in an epilepsy related should be considered signposting bereaved families and affected health professionals to  

9. Summary The best way to lower risk is to try and establish ‘seizure freedom’, using some ‘simple steps’ we can hopefully make a difference for those with an increased risk of SUDEP and potentially prevent unnecessary deaths.

10. Further information/education www.sudep.org  
Many families may well have been aware of the risk of seizures and accidents; however few are unaware of the risk of SUDEP. Osland (2014) describes how families are robbed of opportunities, future hopes and dreams, the chance of being able to say things that they had always wanted to. For most it is the worst loss that they could have ever imagined.
SUDEP Action is a UK based charity that provides bereavement support, they make every epilepsy death count, they produce research aimed at saving lives and provide information for people with epilepsy, their families, carers and health care professionals alike.

11. References:
Dixon PA, Kirkham JJ, Marson AG, et al. National Audit of Seizure management in Hospitals (NASH): results of the national audit of adult epilepsy in the UK. BMJ Open 2015;5:e doi: /bmjopen [Accessed 23/08/2016]
 Donner, E. J., Waddell, B., Osland, K., Leach, J. P., Duncan, S., Nashef, L. and Picot, M. C. (2016), After sudden unexpected death in epilepsy: Lessons learned and the road forward. Epilepsia, 57: 46–53. 
Morton B, Richardson A, Duncan S. Sudden unexpected death in epilepsy (SUDEP): don't ask, don't tell? J Neurol Neurosurg Psychiatry2006;77:199–202.
 Nashef L. SUDEP: definitions and classifications. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [19/08/2016]. Available from:
 Osland K. Understanding the grief of those bereaved by epilepsy. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [Accessed: 23/08/2016]. Available from:
 Tomson T. Risk factors for SUDEP. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [ Accessed: 23/08/2016] Available from: