Sudden Unexpected Death in Epilepsy

Peter Swallow Excerpts

Wednesday 22nd April 2026 Commons Chamber

[Olly Glover (Didcot and Wantage) (LD)]

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.

[Peter Swallow (Bracknell) (Lab)]

I am grateful to the hon. Gentleman for bringing this debate to the House tonight. I have been asked to come along on behalf of my constituent, James Nichols, who lost a dear friend in just that age group to SUDEP and has been a tireless campaigner on the issue ever since. He explained to me that the really tragic thing about SUDEP is that it can often come somewhat out of the blue through breakthrough seizures after an individual has not had seizures for many years, which can make it a particularly traumatic experience for loved ones and family members. Will the hon. Gentleman perhaps touch a bit more on what we can do to support family members?

[Olly Glover]

I thank the hon. Gentleman for his intervention and pay tribute to his constituent and their family. I am going to be talking quite a lot about what we can do to prevent such occurrences in the future.