Olly Glover

In the United Kingdom, more than 600,000 people—one in a 100—live with epilepsy and every day around 80 people are diagnosed. Sudden unexpected death in epilepsy, abbreviated as SUDEP, is the term used when a person with epilepsy dies suddenly and unexpectedly. At least 21 people die every week in the UK from SUDEP, and even that is an underestimate, with epilepsy deaths believed to be under recorded. I will raise two key themes in this debate: first, the SUDEP and epilepsy risk communication and understanding gap, and secondly, the inherent systemic failure to prevent deaths following prevention of future deaths reports. I will conclude by outlining my key asks, which are needed for lasting and meaningful change. The causes of epilepsy-related deaths range from prolonged seizures and accidents to drownings and suicide; however, SUDEP is a devastating worst outcome, accounting for half of all epilepsy fatalities. According to the charity SUDEP Action and the Epilepsy Research Institute UK, the highest rates of death are in areas of deprivation and among vulnerable groups, such as those with worsening mental health, people with learning disabilities or autism, pregnant women and children. SUDEP affects all ages, but we know that it disproportionately affects the young, with a peak in people’s 20s and 30s.