Sudden Unexpected Death in Epilepsy

Olly Glover 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.

[Jim Shannon (Strangford) (DUP)]

First, I commend the hon. Gentleman for bringing this debate forward. I spoke to him beforehand and, like the hon. Member for Bracknell (Peter Swallow), I am here to represent my constituents and those who are affected by this issue in Northern Ireland. SUDEP affects one in 1,000 people with epilepsy annually, which includes many cases in Northern Ireland, yet many families say that they are unaware of the dangers of these night-time tonic-clonic seizures. Does the hon. Member not agree, as he to what the Government need to do, that more must be done to educate patients and family members to ensure that the information is known and that precautions can thereby be taken?

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[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.

[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.

[Bambos Charalambous (Southgate and Wood Green) (Lab)]

Five years ago, my constituent Nadine tragically lost her brother Trevor to epilepsy. An inquest into Trevor’s death ruled that his healthcare team and prison staff at the prison that he was in had not carried out their duties, which led directly to his death. Trevor’s death, sadly, is one of many that highlight a clear unresolved gap in epilepsy care in custodial settings. Does hon. Gentleman agree that the best way to prevent epilepsy deaths in prison is through education and training, to ensure that no life is lost to epilepsy due to lack of awareness or understanding?

[Olly Glover]

I thank the hon. Gentleman for his intervention, and he is absolutely right to raise prison as another setting where people are often vulnerable and where more needs to be done in relation to SUDEP.

Sepsis, which has a similar history of systemic failure, will shortly benefit from a modern service framework co-produced with the UK Sepsis Trust. Meanwhile, neither epilepsy nor neurology is explicitly mentioned in the NHS 10-year plan. There is a mandatory national framework to protect unborn children from anti-seizure medication risks, but there is no mandatory national framework to protect people living with epilepsy from SUDEP and epilepsy deaths, despite 30 years of evidence and repeated calls for action.

SUDEP Action provides intensive assistance on 60 to 70 investigations of deaths each year and sees the toll of long, drawn-out processes and, far too often, a defensive culture by default. It also sees a painful accountability gap where inquests are not even held and families feel silenced. The complacency around SUDEP, seizures and epilepsy, which was first called out by Liam Donaldson as chief medical officer in his annual report in 2021, carries wider harms for communities and persists in too many places.

Moving towards my conclusion, I wish to outline some key asks for the Minister. There are hundreds more stories from families that I wish I could have shared today, but I always endeavour to be as brief and concise as possible in this setting. My thoughts are with all in the bereaved community, whom I stand by and will continue to campaign for. In order to effectively support the wonderful charities that are doing so much to prevent SUDEP and support families through this, I have four questions for the Minister.

First, will the Minister commit to developing a modern framework for SUDEP? This would require policymakers working on epilepsy to work with those with lived experience via SUDEP Action and to spread good practice. In addition to mandatory information on side effects from anti-seizure medicines, there must be a framework for person-centred information about SUDEP and seizure risk, as well as national training initiatives that support whole-system learning.

Epilepsy and SUDEP must be included in neighbourhood healthcare, integrated with acute hospitals, social care and community health settings, as well as in prisons as the hon. Member for Southgate and Wood Green (Bambos Charalambous) said, to maximise the opportunity for prevention. There must be safe levels of epilepsy specialist doctors and nurses in local areas. Improving the quality of the annual check for learning disabilities by including a SUDEP check for people with epilepsy would be a significant step forward in upskilling primary care.

Secondly, will the Minister commit today to arranging a meeting with SUDEP Action? Ministerial colleagues have offered engagement on prevention of future deaths reports with SUDEP Action, promising meetings in letters sent in January and February, but such meetings have yet to take place.

Thirdly, will the Minister support a national oversight mechanism in the Hillsborough Bill? Families have been campaigning for an amendment to the Hillsborough law so that there can be a single, permanent oversight body to prevent the same mistakes that have happened across different tragedies, such as Grenfell, the Post Office, Horizon and infected blood. It would track progress across Departments and public authorities, publicly report on failures, delays or resistance to reform, and prevent the repeated cycles of injustice that are seen after major disasters and scandals.

Finally, will the Minister accept an invitation to visit my constituency to see the work of SUDEP Action, a charity built by families and clinical champions from grief, sustained by courage and determined to stop deaths? I am grateful for the Minister’s time in this Adjournment debate and look forward to her response.