Sudden Unexpected Death in Epilepsy

Dave Robertson Excerpts

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.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)]

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.

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.

[Dave Robertson]

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?

[Mrs Hodgson]

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.

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.