Sudden Unexpected Death in Epilepsy

Debate between Olly Glover and Dave Robertson

Wednesday 22nd April 2026 Commons Chamber

[Dave Robertson (Lichfield) (Lab)]

I thank the hon. Member for bringing to light the Clive Treacey checklist, because it is a really fitting way to remember Clive. It is important to remember, however, that although it is named after Clive, he is not defined by his epilepsy; he was not defined by his learning disability and he does not need to be defined by his death. Clive loved to paint and was a really talented gardener, and his family are eager that he be remembered for those memories that they carry of him. I want to make sure that I take the opportunity to put that on the record.

It is also very clear from the Clive Treacey checklist that SUDEP risk for people with learning disabilities and epilepsy is three times higher—300%—but the actual risk of SUDEP can be cut by 84% if people have an annual check-up. That is part of what the Clive Treacey checklist advises NHS trusts to follow. I again thank the hon. Gentleman and invite him to do all he can alongside me—and, I am sure, many other Members—to make sure that every single NHS trust introduces and follows the Clive Treacey checklist to protect some of the most vulnerable people in our society.

[Olly Glover]

I thank the hon. Gentleman for his intervention and his tribute to his constituent, and I look forward to working with him and others on this issue.

The checklist, commissioned by NHS Midlands and developed by SUDEP Action, is designed for commissioners and providers of care. There is hope that it will be red-flagged in annual health checks for people with learning disabilities, as the hon. Gentleman has said. Despite the existence of this high-risk cohort, most families were, like Clive’s, unaware of SUDEP and epilepsy risk despite learnings from earlier deaths. They were never given the information they needed, and the mistakes of the past continue to be repeated. Recent research by the European Journal of Neurology surveying neurologists found that only one fifth discussed SUDEP with all patients. That speaks to an unacceptable systemic failure. More than 20 years after national guidance was introduced, young people and their families are still being left in the dark.

So what needs to be done? SUDEP Action has developed practical safety tools to empower neighbourhoods: the SUDEP and seizure safety checklist; the EpSMon app, which helps people understand their personal epilepsy risks; and the Charlie card to support risk reduction and communication across care settings. We know that where the adult checklist is used, the rate of SUDEP conversations has risen from 20% to 80% and risks have fallen. But the challenges are vast. Progress is fragmented, it is far too slow, and at a time of rising inequalities all too often the risks are getting worse. The series of prevention of future deaths reports into epilepsy reflects broader patterns: missed opportunities; a SUDEP and epilepsy risk communication gap; a failure to act; and a culture that too often fails to listen to families.