SUDEP Action Day 2025 (UK): Break Down Barriers, Start the Conversation, Save Lives

At a glance

• When: Wednesday 15 October 2025 (held every year on the third Wednesday of October). CURE Epilepsy

• Theme: #BreakDownBarriers — tackling the obstacles people with epilepsy face and spotlighting what we can do now to prevent epilepsy deaths. SUDEP Action+1

• Why it matters: SUDEP (Sudden Unexpected Death in Epilepsy) is rare but real—about 1 in 1,000 people with epilepsy die from SUDEP each year, with risk higher in those with persistent generalised tonic-clonic seizures. Awareness and practical prevention steps save lives. Epilepsy Action+1

What is SUDEP?

SUDEP stands for Sudden Unexpected Death in Epilepsy—a death in someone with epilepsy without a clear alternative cause (such as trauma, drowning, or a specific medical condition identified at post-mortem). Many cases are unwitnessed and occur during sleep. The precise mechanism isn’t fully understood, but researchers point to a mix of breathing, cardiac rhythm, and brain recovery problems following seizures—particularly generalised tonic-clonic seizures. Wikipedia

In the UK, charities and clinical bodies emphasise two connected truths:

1. SUDEP is uncommon—and scare-mongering helps no one.

2. Risk is not equal, and there are concrete steps that reduce it. Epilepsy Action+1

SUDEP risk: who is more vulnerable?

While anyone with epilepsy can be affected, research and clinical guidance consistently associate higher risk with:

• Frequent or uncontrolled seizures, especially generalised tonic-clonic seizures.

• Missed or irregular medication.

• Nocturnal seizures or seizures during sleep.

• Recent changes in medicines or lifestyle that increase seizure likelihood.

• Drug-resistant (refractory) epilepsy not yet escalated to specialist review or advanced therapies. Wikipedia+2CURE Epilepsy+2

Key UK stat: Around 1 in 1,000 people with epilepsy die from SUDEP each year (and around 1 in 4,500 among children). Epilepsy Action+1

The 2025 theme: “Break Down Barriers”

This year’s theme from SUDEP Action, #BreakDownBarriers, calls on all of us—patients, families, clinicians, schools, employers, and policymakers—to dismantle the obstacles that stop people getting timely information, individualised risk discussions, specialist care, and reasonable adjustments at home, work, and education. The aim is simple: remove friction, reduce risk, and save lives. SUDEP Action+1

Common barriers include:

• Silence: Some people are never told about SUDEP, or it’s mentioned without practical guidance.

• Access gaps: Long waits for epilepsy specialists; fragmented care across neurology, primary care, and mental health.

• Lifestyle hurdles: Work or study schedules that disrupt sleep; difficulty maintaining medication routines; stigma that prevents asking for help.

• Digital divide: Limited awareness of wearables, alarms, and tools that may help some people manage risk at night (when appropriate, and after clinical advice).

Concrete steps to reduce SUDEP risk (UK-focused)

You can’t eliminate risk completely—but you can reduce it. The following actions are drawn from NICE guidance and leading health organisations. Use them as a conversation checklist with your clinician. NICE+2CDC+2

1) Medication: “boringly brilliant”

• Take anti-seizure medication as prescribed—it’s the single most important risk-reduction step for most people.

• Don’t stop or change doses abruptly without medical advice.

• If you’re still having seizures, push for review: dose optimisation, combination therapy, or alternatives (surgery evaluation, neuromodulation). CDC+1

2) Tackle triggers

• Guard your sleep—many SUDEP cases follow nocturnal seizures; sleep loss is a common trigger.

• Alcohol and recreational drugs can lower seizure threshold—discuss safe limits frankly.

• Manage illness, stress, and dehydration; create a plan for sick days. Epilepsy Foundation

3) Escalate when needed

• If seizures persist or worsen, ask for referral to an epilepsy specialist or comprehensive epilepsy centre. Persistent generalised tonic-clonic seizures warrant urgent optimisation. CDC+1

4) Night-time safety (individualised)

• If you have nocturnal seizures, talk with your clinician about supervision options (e.g., someone nearby, listening devices) and the pros/cons of monitors or wearables; these are not for everyone, but may be appropriate in selected cases. Wikipedia

5) Agree a personal risk discussion & plan

• UK guidance recommends honest discussion of SUDEP for people with nocturnal seizures (and others when appropriate) and clear steps to minimise risk—get this documented in your care plan. NICE

6) Tell your circle

• Share simple seizure first-aid steps with family, friends, teachers, housemates, and employers; make sure someone knows when to call 999 and what to do after a tonic-clonic seizure.

What NICE says (in plain English)

The NICE epilepsy guideline (NG217) advises clinicians to:

• Discuss SUDEP risk—especially for those with seizures during sleep—and involve families/carers where appropriate.

• Emphasise medication adherence and strategies to minimise risk.

• Consider interventions when seizures remain uncontrolled, including timely referral and evaluation for advanced options. NICE+1

If you feel SUDEP hasn’t been discussed with you—and you want it to be—ask. It’s your right to understand risks and options.

Start the conversation: questions to ask your clinician

Take these to your next appointment (or email them in advance):

1. What is my current SUDEP risk and what drives it?

2. What’s our step-by-step plan to reduce seizures, especially night-time generalised tonic-clonic seizures?

3. Could I benefit from a different drug regimen, dose optimisation, or referral to a specialist/surgical evaluation?

4. What should my family/flatmates know about seizure first aid and when to call 999?

5. Should we discuss any night-time supervision or devices for me, and what are their limits?

6. How do I manage sick days, alcohol, travel, and jet lag without derailing seizure control?

7. When will we review this plan (e.g., in 3–6 months)? Epilepsy Foundation

How to take part in SUDEP Action Day 2025 (UK)

This year is about practical momentum. Pick one or more:

• Share a post with #SUDEPActionDay and #BreakDownBarriers that points to risk-reduction tips and NICE guidance. Even a short message can start a life-saving conversation. SUDEP Action+1

• Book a review: if you’ve had a recent generalised tonic-clonic seizure, a night-time seizure, or a medication change, ask your GP for an expedited check-in or specialist referral. NICE

• Do “My Way to 5K” your way: walk, run, wheel, swim, or cycle any time in October; raise funds and awareness alongside the Day. sudep.mwb.digital+1

• Educate your network: share first-aid steps, a seizure action plan, and link to trusted UK resources. Epilepsy Action

• Workplace/School pledge: commit to reasonable adjustments (protected sleep, flexible scheduling for meds/appointments) and anti-stigma training.

FAQs (clear, concise, evidence-based)

Is SUDEP common?
No—most people with epilepsy will not die from SUDEP. But it is a leading cause of epilepsy-related death, so risk-reduction matters—especially if you have persistent generalised tonic-clonic seizures. Wikipedia

What’s the #1 risk-reduction step?
Take your seizure medicine as prescribed and push for optimisation if you’re still having seizures. Don’t alter doses without advice. CDC

Does night-time monitoring help?
For some people with nocturnal seizures, supervision or certain devices may reduce risk as part of a personalised plan, but they’re not universal solutions. Always discuss with your clinician. Wikipedia

Should my child’s school know?
Yes—schools should have a seizure plan, staff trained in basic first aid, and awareness of triggers like sleep disruption. (Work with your epilepsy nurse/specialist.)

Is talking about SUDEP scary or harmful?
Silence creates confusion. Plain-English discussions rooted in facts and practical steps empower families and reduce risk. UK guidance supports tailored risk conversations. NICE

For families bereaved by epilepsy

If you’ve lost someone and suspect SUDEP, you are not alone. UK charities provide specialist bereavement support, advocacy on accurate death certification, and help navigating inquests and data collection (so future families benefit). Consider connecting with national organisations for confidential support. SUDEP Action

Make it real today: a 30-minute action plan

In the next half hour:

1. Message your GP practice or epilepsy team: ask for a risk-reduction review and copy in these questions.

2. Set medication reminders on your phone (alarms, app, or blister packs).

3. Share a short post on #SUDEPActionDay linking to risk information and the 2025 theme.

4. Brief your inner circle on seizure first aid and when to call 999.

5. If you have nocturnal seizures, email your clinician asking whether night-time strategies apply to you. CDC+1

Trusted UK & international resources

• SUDEP Action – SUDEP Action Day (theme, activities, support). SUDEP Action+1

• CURE Epilepsy – SUDEP Action Day 2025 (date confirmation; global info). CURE Epilepsy

• NICE Guideline NG217 – Reducing risk of epilepsy-related death (plain-English summary for patients to discuss with clinicians). NICE+1

• Epilepsy Action (UK) – SUDEP overview and practical tips. Epilepsy Action

• Epilepsy Society (UK) – SUDEP facts and UK statistics. Epilepsy Society

• CDC – Practical risk-reduction advice (helpful for checklists). CDC

• Background reading – Mechanisms, risk factors, and evidence summaries. Wikipedia+1

Key takeaways

• Date & theme: 15 Oct 2025, #BreakDownBarriers. CURE Epilepsy+1

• Risk exists but is modifiable—especially by controlling generalised tonic-clonic seizures, taking medication as prescribed, improving sleep, and escalating care when seizures persist. CDC+1

• Ask for a personalised SUDEP discussion and document a plan per NICE guidance. NICE

• Act today: book a review, share first-aid info, and consider taking part in My Way to 5K to raise awareness and funds throughout October. sudep.mwb.digital