Keeping patients with epilepsy safe: a surmountable challenge?

This quality improvement project was inspired as an answer to a problem that intellectual disability teams have been struggling to manage whilst caring for people with epilepsy (PWE). The issue was that despite guidance to discuss the possibility of sudden unexpected death in epilepsy (SUDEP) be discussed with a newly diagnosed PWE this is rarely done. Additionally when, how, and what to discuss about SUDEP and reduce its risk is arbitrary, non-person centred, and with no structured evidence.

Prior to initiating changes a discussion of SUDEP was recorded in just 10% of PWE. We introduced a check-list to help identify risk factors for SUDEP. We then modified the check-list, and then used it via telehealth, a way of contacting patients and their carers over the phone using the check-list approach. Following interventions, discussions of SUDEP are now recorded in 80% of PWE. Feedback from patients, carers and primary and secondary care professionals has been positive.

We are now developing an app so that patients and carers can monitor their own risk factors, thus empowering them and increasing their knowledge and awareness of SUDEP.