SUDEP Action

Making every epilepsy death count
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The buzz around National Epilepsy Week is really something this year

The buzz around National Epilepsy Week is really something this year.  We are thrilled to be announcing new tools available to support people with epilepsy and clinicians.

For the first time clinicians can register for access to our SUDEP and Seizure Safety Check List and people with epilepsy can register for the EpSMon App which is designed to help people in between visits to doctors.

National clinical guidance has encouraged discussion of risk since 2004, but we know that this rarely happens in some places. Clinicians in the South-West found that using the check list raised discussions from 10% to 80% of all people within epilepsy services which is amazing !.  There has been very positive feedback and an increase in interventions to reduce risk. The population is a local one and it is early days but it is interesting that reported deaths in the last two years have fallen so we are going to be keeping a very close eye on this.  

We owe a great deal to Liz and Bob Hollingdale and all at Kt’s Fund in Cornwall who raised the funds to support this project following the sudden death of Katie Hallet.  Katie was a young student nurse who was unaware she was at risk and died before she could access services.  Huge thanks to the local coroner who allowed access to the records of people who died suddenly in Cornwall over 9 years. With her help we discovered that many people who died had a worsening of known risks in the 3-6 months before they died, but were not in contact with their doctor.

We know people have to make choices daily and that things can change. People live busy lives and may only see their doctor once a year and some less frequently than that. EpsMon has been designed to help people by prompting them to use their App every three months to keep track of risks from seizures. 

For me, this all seems a long way from the 1990’s when there was really no knowledge on SUDEP or how people can make decisions to reduce some risks.  We know there is no proved intervention for epilepsy deaths, but bereaved families say they wish that their loved ones had the information so that they could make choices. In this information rich world, people living with health conditions deserve information that is both accessible and helpful. These new tools have already changed medical practice in Cornwall and we hope that making them available to all will start to make a real difference to people’s lives.