Sudden Unexpected Death in Epilepsy

Simon Opher Excerpts

Wednesday 22nd April 2026 Commons Chamber

[Olly Glover]

The hon. Gentleman is absolutely correct to say that awareness raising and increasing understanding are key priorities in dealing with SUDEP and epilepsy in general.

Patients with epilepsy carry a risk of premature death that is, on average, two to three times higher than in the general population, as has been outlined by Frontiers in Epidemiology. What is most devastating is the knowledge that 60% of epilepsy-related deaths each year are believed to be preventable, according to the European Journal of Neurology, with SUDEP accounting for many of these deaths.

[Dr Simon Opher (Stroud) (Lab)]

I thank the hon. Gentleman for bringing this really essential debate to the House. My constituent Emma Taylor tragically lost her daughter at the age of 19 and she now campaigns tirelessly for SUDEP Action as a policy champion. Does the hon. Gentleman agree with her on the need for the Government to promote proper first aid seizure training?

[Olly Glover]

I very much agree with the hon. Gentleman’s constituent. I thank her for her tireless campaigning and offer my condolences for her loss.

My Oxfordshire constituency of Didcot and Wantage is the home to SUDEP Action, a charity that is local, national and international in its impact. In 1995, five bereaved women came together around a kitchen table to found the charity in tribute to Alan, aged 27; Matthew, 21; Natalie, 22; and William, 22—all of whom had died, with the condition unrecognised beforehand. Jane Hanna, Sheila Pring, Catherine Brookes, Sue Kelk and Jennifer Preston faced despair together and chose to build hope. Since 2020, SUDEP Action has worked alongside the Epilepsy Research Institute to identify tackling epilepsy deaths as a No. 1 research priority.

The key challenge that SUDEP Action faces is that research insight does not reliably or quickly reach neurology consultations, primary care or social care. National Institute for Health and Care Excellence guidelines exist, but services are inadequately supported to implement them. Jane Hanna from SUDEP Action told me that my own constituents face nine-month waits for a first seizure clinic and waits of nine to 12 months for follow-ups. She told me that waits of this magnitude, such as we are experiencing in my constituency, are unsafe. Her partner Alan waited for four months and died suddenly five months later. Waits such as these are not confined to my constituency; they are reflective of a structural problem across the country.

Free safety tools exist to tackle the lack of knowledge and the complacency around seizures and SUDEP, but systemic issues are difficult to shift because of poor access, poor medicine management, failure to communicate risk and poor recording of deaths. An independent review was named after Clive Treacey. Clive died at 47 in 2017 in a hospital setting where he had lived for 10 years. The report on his life is shocking for this country in the 21st century. The Minister might be aware of the debate secured last year by the hon. Member for Lichfield (Dave Robertson), who I am pleased to see in his place tonight, and of the response from the Under-Secretary of State for Health and Social Care, the hon. Member for Glasgow South West (Dr Ahmed), who supported the Clive Treacey checklist.