SUDEP Action

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SUDEP: What every Neurologist should know


Leading epilepsy experts have explored  SUDEP and the role of the Neurologist in identifying and communicating this risk with their patients. 

In a review published in Epilepsy Disorders, an education journal by the International League Against Epilepsy (ILAE), the article provides a comprehensive overview of SUDEP to ‘empower general neurologists to provide better informed person-centred advice to people with epilepsy, in order to help keep them safe. It emphasises the duty and responsibility of ‘every physician caring for people with epilepsy’ to know the risks associated with the condition so they can provide appropriate counselling of how to reduce those risks. 

The review also unpicks the issues of when and how to discuss SUDEP, the known risk factors linked to it, and importantly, what can be done to reduce these; ultimately helping to keep people with epilepsy safer and reducing some of the potentially avoidable deaths each year. 

The experts discuss how preventative steps should be focused towards modifiable risk factors which may impact on SUDEP occurring eg: non-adherence to AED medication, night-time surveillance and lifestyle choices. The review also highlights that a multi-disciplinary approach to epilepsy care / risk management should be considered in instances of pregnancy, comorbidities and learning disabilities. 

Timing of the conversation is important, with general clinical agreement that doing so early in the course of the epilepsy diagnosis is preferable. This is echoed by many of our bereaved families, whose loved ones died soon after diagnosis without ever having had   the ‘SUDEP conversation’ with their clinicians in their early appointment. Two high profile Fatal Accident Inquiries involving SUDEP Action supporters encapsulate this need for urgency. 

The article points out that documenting all risk discussion in patient notes is important from a clinical governance perspective. NICE guideline recommends that all key epilepsy information including areas of risk should be repeated at subsequent appointments. The positives and concerns for such discussions are tallied in the review, with the positives column unsurprisingly being more extensive. If discussions cannot take place, clinicians are urged to fully document why this is the case.

Having the SUDEP conversation can be daunting to non-epilepsy specialist clinicians who help care for people with epilepsy, such as general Neurologists, GPs, community Nurses & Learning Disability Nurses. However the review provides a helpful pathway to help navigate these discussions as part of an early appointment. The experts also suggest clinicians consider the communication model provided by the SUDEP and Seizure Safety Checklist as a way to support open discussion, and help identify areas for the risk reduction and interventions. This concern by some non-specialists is why SUDEP Action provides tools, information and resources for clinicians as well as people with epilepsy, such as SUDEP Action’s free RCGP e-learning module; so a holistic approach to care is possible, with both people with epilepsy and all the clinicians involved in their care becoming empowered in managing the condition. 

The review concludes by pointing out that while there has been significant progress in understanding epilepsy as a whole, person centred communication of risk  remains a largely neglected area of research, funding and proven interventions. Despite the fact that clinicians play a ‘critical role in patient education, to encourage epilepsy self-management and to ensure that people with epilepsy are fully informed of the risks of epilepsy and how to modify those risks’. The article states  ‘it is only with clearly communicated and accurate information about epilepsy that people with epilepsy can make informed decisions to reduce their risks of mortality in epilepsy’; something SUDEP Action and our bereaved families wholeheartedly advocate.