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Cornwall SUDEP Study could save lives

A study in Cornwall could help reduce the risk of Sudden Unexpected Death in Epilepsy (SUDEP). Researchers are trying to establish whether a “safety check list” might help doctors identify epilepsy patients at risk of SUDEP.

The research is funded by Epilepsy Bereaved, through Kt’s Fund.  Kt’s fund was set up by the family and friends of 20-year-old Katie Hallett who died of SUDEP.

Katie’s mother Liz Hollingdale said: “We had never heard of SUDEP until we lost Katie in 2006.”

The unique study is looking at the circumstances of people dying in the local community regardless of their contact with specialists.   It is looking at records held by the local coroner since 2004.  Over 100 epilepsy-related deaths are included in the study.

The study is led by Dr Rohit Shankar, a consultant in adult developmental neuropsychiatry at Cornwall Partnership NHS Foundation Trust.  The research team includes the local Coroner Dr Emma Carlyon and Professor Matthew Walker from the Institute of Neurology.  It also includes Dr Brendan Mclean a consultant neurologist with the Royal Cornwall Hospital Trust.

Dr Shankar spoke to BBC Cornwall on Monday 4th February 2013.  He explained that the study aims to test a checklist of SUDEP risk factors which researchers are using clinically.  Researchers are trying to see if the safety checklist is able to pick up SUDEP deaths or those with risk factors.  Dr Shankar stated that alcohol had come up often in the study and could have a big link to SUDEP.  If this features in the research findings, then doctors can use this information to advise their patients.  The researchers began data collection in December 2012 and hope to complete this exercise by March, 2013.  All data is anonymous.

Epilepsy Bereaved Chairman Professor Stephen Brown believes the study will help save lives.  He said: “It has to do with helping identify risk factors and giving people better information about it and knowing what we can do to help stop it.”

He pointed out that: “an observation that some people with epilepsy could actually die in a major seizure, as a result of the seizure was misattributed in the past to suffocation or other things.  But in fact we know that there are several hundred deaths due to this here in the United Kingdom.  More than that, a substantial number of them are probably avoidable or potentially avoidable.”

Over 500,000 people in the UK have epilepsy.  Epilepsy deaths accounts for at least three deaths a day in the UK.  Epilepsy related deaths are in the top ten of all causes of early death and so are an important local and national priority.

Professor Brown stated that a person with epilepsy has the right to know if there is something they can do to lower their risk of SUDEP.  He said: “Families would frequently come back and say but no one ever told us what we could have done about it.”

Liz who lost her daughter Katie to SUDEP said: “I truly believe in my heart of hearts if we had the knowledge, had we been warned of SUDEP, had we had the expertise of somebody like Rohit that Katie would still be here today.”