Epilepsy care: A system under strain – and the opportunity for change

Each week, 600 people are newly diagnosed with epilepsy.² Around one in three will live with uncontrolled seizures that do not respond to medication,² and an average of 21 people will die each week – half from Sudden Unexpected Death in Epilepsy (SUDEP).³ These outcomes are not inevitable. They are the consequence of fragmented care pathways, workforce gaps, and inequities that could be addressed with strategic leadership.

The systemic problem

Epilepsy disproportionately impacts both patients and the system:

• Emergency burden: Epilepsy accounts for 2 to 3 per cent of all emergency department attendances, more than 60,000 per year – with most cases self-limiting.⁴
• Fragmented pathways: Delays in diagnosis, lack of continuity, and poor coordination between emergency, primary, and specialist care undermine outcomes.
• Primary care deskilling: Centralisation has left GPs less confident to manage epilepsy, leading to overreferral and bottlenecks in secondary and tertiary services.
• Inequity of access: Prevalence is one-third higher in deprived areas, yet those populations face greater barriers to services.⁵ Transition for young people and support for those with co-existing conditions remain weak.

Why it matters

The status quo entrenches inequality, wastes resources, and costs lives. People with epilepsy are more likely to be unemployed or underemployed, and poor seizure control carries risks of injury, reduced independence, and premature death. For the NHS, reliance on ambulances, emergency admissions, and prolonged hospital stays adds to pressures already at breaking point.

What needs to happen

System leaders have an opportunity to position epilepsy care as a flagship for prevention, integration, and equity. The solutions are clear:

1. Rebuild primary care capability
   • Upskill GPs and advanced clinical practitioners
   • Deploy epilepsy specialist nurses and pharmacists into communities
   • Create rapid advice channels for treatment queries
2. Develop community-based hubs
   • Replicate the diabetes model of nurse-led, multidisciplinary care
   • Partner with charities and voluntary organisations to enhance patient support
3. Standardise and streamline pathways
   • Implement a national epilepsy care framework to reduce postcode lotteries
   • Ensure equitable access to surgical options, vagus nerve stimulation, and innovative treatments
4. Leverage digital tools and AI
   • Expand patient-initiated follow-up (PIFU) and AI-driven support tools
   • Enable inclusive access to records and decision support across services
5. Invest in prevention-focused models
   • Scale proven interventions, such as embedding epilepsy nurses in emergency departments
   • Shift resource allocation toward early intervention and continuity of care

A call to leadership

Epilepsy care is a litmus test for the NHS’s ambition to move from reactive crisis management to proactive, prevention-first healthcare. The solutions are not hypothetical; they are proven, practical, and scalable. What is required now is leadership.

System leaders must:

• Prioritise epilepsy in commissioning – recognising its prevalence, inequity, and preventable harm, and embedding it into local and national strategic plans.
• Invest in community capacity – through epilepsy nurses, pharmacists, and GPs upskilling – to shift care closer to home, reduce reliance on emergency pathways, and restore confidence in primary care.
• Champion integrated pathways – ensuring smooth transitions between emergency, secondary, and community care, and eliminating postcode variation in access to diagnosis, advanced treatments, and support.
• Embed digital and AI-enabled tools – to strengthen self-management, streamline communication across services, and empower patients and families.
• Measure and account for impact – using outcomes such as reduced admissions, improved continuity of care, and patient-reported quality of life to drive accountability and improvement.

The NHS 10-Year Health Plan provides the framework. Epilepsy offers the opportunity to deliver it in practice. By making epilepsy care a flagship for integration, prevention, and equity, system leaders can not only transform outcomes for hundreds of thousands of people but also demonstrate what a sustainable, patient-centred model of long-term condition management looks like.

This is not about adding another priority to an already crowded agenda – it is about unlocking efficiency, addressing inequality, and saving lives. The time to act is now.

Click the image below to access the full report of the recent advisory board, which was initiated, organised and fully funded by Angelini Pharma UKI Limited, and conducted by HSJ Information, including the list of advisers and contributors.

References

1. Royal College of Paediatrics and Child Health (RCPCH). Epilepsy. March 2020. Available at: https://stateofchildhealth.rcpch.ac.uk/evidence/long-term-conditions/epilepsy/ Accessed September 2025.

2. Epilepsy Research Institute UK. Epilepsy Statistics. Available at: https://epilepsy-institute.org.uk/eri/about-epilepsy/epilepsy-statistics/ Accessed September 2025.

3. SUDEP Action. Prevent21 Summit on Tackling Epilepsy Deaths: Consensus Recommendations Summary. Available at: https://www.neural.org.uk/wp-content/uploads/2021/04/2018-12-epilepsy-consensus-recommendations.pdf Accessed September 2025.

4. Hassiotis A, Shankar R. Inequalities in epilepsy in the UK: action is needed now. The Lancet Public Health. 2024;(9)e536-e537.

5. Epilepsy Action. UK epilepsy prevalence and incidence update. 2023. Available at: https://www.epilepsy.org.uk/news/uk-epilepsy-prevalence-and-incidence-update Accessed September 2025.