Contribution
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.