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.
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?
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.
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?
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.
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?
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.
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.
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.
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?
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.
I thank the hon. Member for Didcot and Wantage (Olly Glover) for securing this important debate. At the outset, I will say that I am happy to meet him to discuss all the action points he raised at the end of his speech—and as for where that meeting will take place, we can discuss that.
Sudden unexpected death in epilepsy, or SUDEP for short, is a vitally important issue for those directly and tragically affected, and for many Members. We must learn lessons when deaths occur and make the changes needed. We must also ensure timely access to the right specialist support for people with epilepsy. We must tackle long waits for neurology appointments, and continue to build the evidence base, so that innovative treatments, such as medicinal cannabis, where clinically appropriate, are available in a safe and consistent way. I will set out the actions that we are taking with the NHS and partners to reduce risks as well as improve outcomes for people living with epilepsy.
First, there is a statutory duty for organisations to respond to a prevention of future deaths report issued by a coroner when their investigation identifies circumstances that create a risk of future deaths. That provides a clear mechanism for organisations to set out the actions that they will take to address those risks. Alongside the PFD process, it is essential that the NHS continues to strengthen how it identifies and acts to mitigate risk in day-to-day epilepsy care. That is why, when it comes to epilepsy, we are working with the NHS and partners to embed structured risk assessments and consistent risk communication in routine practice, so that known risk factors are identified early, addressed where possible, and discussed openly with patients and families, in line with best practice.
Cutting waiting lists, including for neurology services, is a key priority for this Government. We have committed to achieving the NHS constitutional standard, which is that 92% of patients should wait no longer than 18 weeks from referral to treatment, by March 2029. We have already delivered 5.2 million additional elective appointments in our first year in government. Waiting lists overall are coming down, but we recognise that they remain too high, with neurology remaining a particularly challenged specialty.
I thank the Minister for delineating everything that the Government are doing to support people with epilepsy. I was fortunate enough to secure an Adjournment debate a couple of months ago to talk about the Clive Treacey safety checklist. The Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Glasgow South West (Dr Ahmed), said at the Dispatch Box that he expects every NHS trust to follow that checklist. Does she agree with him, and will she send the message that all trusts must follow that checklist?
I welcome the development of the Clive Treacey safety checklist. It is an important part of Clive’s legacy, notwithstanding the comments that my hon. Friend made about his legacy being much wider than that. We would encourage commissioners and service providers to use the checklist and its accompanying guidance as a key tool when designing services for their local populations, and to ensure that steps outlined in the checklist are followed whenever a patient experiences a significant change in their care. We hope that is being rolled out, followed and used.
At the national level, there are a number of programmes and tools supporting safer, more consistent epilepsy care. NICE guidance recommends that people with a learning disability have monitoring reviews at least annually, and information should be tailored and adapted. They should have access to specialist care and co-ordinated, multidisciplinary support. NICE is clear that where young people are transitioning into adult services, planning should begin early. While NICE guidance is not mandatory, the Government expect commissioners and service providers to take it fully into account when making decisions on how best to meet the needs of their local communities.
NHS England’s RightCare programme has developed an epilepsy toolkit to support commissioners and clinicians in improving epilepsy care and reducing preventable deaths. The toolkit makes structured risk assessment and risk reduction, and proactive conversations about SUDEP, a core part of guidance, and it signposts practical resources, such as the SUDEP and seizure safety checklist, to support consistent risk communication in line with NICE guidance.
Health Education England, which is now part of NHS England, has developed an epilepsy programme in collaboration with SUDEP Action. That includes evidence-based training modules, delivered through the NHS England e-learning for healthcare platform, covering practical diagnosis and management, medication adherence and SUDEP risk factors. Alongside that, Government-supported frameworks, including the national bundle of care for children and young people with epilepsy, are helping to drive more equitable access to timely intervention and rehabilitation.
20 of 22 shown
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.
For patients with epilepsy, timely access to specialist advice, supported by clear referral routes and co-ordinated care across primary care, community services and hospitals, is critical to good outcomes. Nationally, NHS England’s neurology transformation programme developed a model of integrated care to support integrated care boards in delivering the right service at the right time to patients, as close to home as possible.
For those with refractory epilepsy who need highly specialised input, NHS England’s updated service specification for specialised adult neurology services is clear that specialised neurology centres must include services for the assessment and management of refractory epilepsy.
Progress is being made on the treatment backlog. Between February 2025 and February 2026, the number of incomplete neurology pathways reduced by over 10,000, the average waiting time reduced from 16.5 weeks to 15 weeks, and the proportion of patients seen within 18 weeks increased to 57.9%. We will continue to work with the NHS to improve access and reduce delays for patients, including those with epilepsy, and families.
Research is central to improving outcomes for people with epilepsy. The Department funds research into epilepsy through the National Institute for Health and Care Research—the NIHR—and, in the five years from April 2020 to March 2025, we committed almost £19 million to 15 epilepsy research projects. The NIHR welcomes applications on all topics, including epilepsy.
I fully understand why patients and families continue to press for safe and equitable access to medical cannabis, particularly for children with drug-resistant epilepsy. There is one licensed cannabis-based medicine, Epidyolex, that is available for prescribing on the NHS, where clinically appropriate, following clear evidence of its safety and clinical and cost-effectiveness. Most cannabis-based medicines that patients are seeking are unlicensed and have not been assessed for their safety, quality or effectiveness. Until the evidence base improves, the NHS will not routinely fund them, and clinicians will rightly be cautious about prescribing. That is why, through NIHR and NHS England, the Government are investing over £9 million in clinical trials of cannabis-based medicines for drug-resistant epilepsy, to strengthen the evidence and support consistent, safe decision making.
We know that around 30% of people with epilepsy have a learning disability, as my hon. Friend the Member for Lichfield (Dave Robertson) set out, and that the risk of SUDEP is higher for those with a learning disability. The most recent “learning from lives and deaths” report found that epilepsy was one of the most common underlying causes of death for people with a learning disability between 2021 and 2023. That highlights how crucial it is that information and support for patients with epilepsy who have a learning disability is tailored to their individual needs.
In closing, I thank the hon. Member for Didcot and Wantage for securing this very important debate; it is great to see it so well attended. I thank all hon. Members who took part in it and made interventions, including my hon. Friend the Member for Bracknell (Peter Swallow), the hon. Member for Strangford (Jim Shannon), and my hon. Friends the Members for Stroud (Dr Opher), for Lichfield, and for Southgate and Wood Green (Bambos Charalambous). They made a number of very important points, and if I need to follow up on any of them with colleagues in other Departments or in my Department, I definitely will.
I also thank those with lived experience of epilepsy, and the families who have lost loved ones to SUDEP. Their courage in speaking out continues to drive change through the work that we do in this place. We will continue to work with partners across the health system to support people with epilepsy and, ultimately, reduce deaths from epilepsy.
Question put and agreed to.
Sudden Unexpected Death in Epilepsy · Order Paper · Order Paper