Sudden Unexpected Death in Epilepsy

Bambos Charalambous Excerpts

Wednesday 22nd April 2026 Commons Chamber

[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.