New research into learning from epilepsy deaths - more to be done to reduce risks

A recent study published by the American Academy of Neurology, takes a closer look at understanding Sudden unexpected death in epilepsy (SUDEP).

Led by Dr Orin Devinsky and his research team, the study suggests that SUDEP deaths can happen even in people with well controlled epilepsy.

The findings noted that risks were heightened if someone was sleep deprived or had missed their last dose of medication. In the deaths studied (between October 2011 and June 2018), only 37% had taken their last prescribed dose of epilepsy medication, with next of kin saying:

• some forgot to take medication
• some skipped doses
• some stopped taking it or reduced the dose because of side effects

Thus, increasing their risks.

We know SUDEP accounts for around 50% of all epilepsy related deaths, and while not everyone with epilepsy will be at ‘high risk’, it is likely they will face some risks over time. Knowing about the risks linked to SUDEP and epilepsy deaths and taking positive steps to reduce those risks, can lessen the chances of SUDEP.

These findings endorse much of the research from our Epilepsy Deaths Register (EDR), which holds information on over 750 epilepsy deaths. The EDR is available for professionals and families to report a death and provide information on the circumstances leading up to it.

A poster (pictured right) was presented at the Association of British Neurologists (ABN) Annual Meeting in Edinburgh in June, by researchers from Newcastle University and the EDR team, which showed similar findings.

‘The adult profile of SUDEP using the Epilepsy Deaths Register’ studied 349 cases of SUDEP and found that SUDEP can occur in otherwise well people with epilepsy. Concluding that, SUDEP should be discussed and safety checks embedded for everyone rather than just targeted at people known to be at higher risk.

SUDEP Action work to prevent epilepsy deaths and note that despite an increase in information provision about risks of death in epilepsy, many of those who have died were unaware that you could die of epilepsy. Many families reporting to the EDR stated ‘lack of information’ as a possible contributory factor to the death -

 “if they had known, they may have adopted some risk reduction strategies”

This is why we launched our free award-winning epilepsy safety tools, which include the clinical tool SUDEP and Seizure Safety Checklist, and the patient app EpSMon. Established in 2015, following significant research which demonstrated that standardized communication between clinicians and people with epilepsy can:

1. Improve patient awareness of epilepsy risks and support clinical understanding of SUDEP and epilepsy risks
2. Empower people with epilepsy to manage their epilepsy risks in-between appointments
3. Help reduce known epilepsy mortality risks in those who as part of these conversations are shown to be at risk

SUDEP Action are the only charity in the UK specialising in providing unique tailored services for the bereaved, including support, advocacy and counselling. The services are supported by a framework developed from over 20 years’ experience of working with the bereaved and listening to what they tell us is needed.

For more information on reducing epilepsy risks see our information pages: https://sudep.org/epilepsy-and-risk

If you have information on an epilepsy-related death which you could share with the Epilepsy Deaths Register research project, please visit: https://epilepsydeathsregister.org/

SUDEP Action’s specialist support team are here for anyone affected by an epilepsy death – find out more about how they can help here: https://sudep.org/someone-has-died