Let’s talk about epilepsy

Introduction to: Harder to Manage Epilepsy

In this episode, we introduce Harder to Manage Epilepsy, a new podcast series from Young Epilepsy exploring the challenges faced by children, young people and families living with epilepsies that don’t respond to medication.
Around 1 in 3 young people with epilepsy continue to have seizures despite treatment. These epilepsies are often described as harder to manage or drug‑resistant and can come with additional challenges, including difficulties with learning, development, behaviour and everyday family life.
This series is about shining a light on those experiences, challenging misconceptions, and sharing clear, trustworthy information and support.
NOTICE: Epilepsy is a highly individualised condition. The information, experiences, and views shared in this podcast may not reflect those of Young Epilepsy and are not intended to replace professional medical advice.
Always consult a qualified healthcare provider for personalised support. If you’re feeling sad, worried, or lonely, text ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout
🗣️ Meet our guests:
Lara Carr, Head of Research at Young Epilepsy – Host
Professor Helen Cross, The Prince of Wales’s Chair of Childhood Epilepsy and Head of the Developmental Neuroscience Programme at UCL–Great Ormond Street Institute of Child Health Honorary Consultant in Paediatric Neurology, Great Ormond Street Hospital Young Epilepsy
Lindsay, Mum to Jess, who has lived with epilepsy since early childhood, sharing an honest parent perspective on diagnosis, treatment journeys and family life.
💜 Why this series matters
If you’re living with harder to manage epilepsy – or supporting someone who is – it can feel isolating and overwhelming. This series aims to help you:
Understand that epilepsy looks different for everyone
Feel less alone, more informed and more hopeful
Know where to find trusted support and information
📍 Support and further information If you or someone you care for is affected by harder to manage epilepsy, help is available:
Young Epilepsy website: https://www.youngepilepsy.org.uk/
Information about epilepsy: https://www.youngepilepsy.org.uk/about-epilepsy
Support for parents and carers: https://www.youngepilepsy.org.uk/parents-and-carers
Support and inclusion services: https://www.youngepilepsy.org.uk/what-we-do/support-inclusion 
📢 Follow Young Epilepsy:
Facebook: http://facebook.com/YoungEpilepsy
Instagram: https://www.instagram.com/youngepilepsy/
YouTube: https://www.youtube.com/user/youngepilepsy
LinkedIn: https://www.linkedin.com/company/young-epilepsy/
TikTok: https://www.tiktok.com/@youngepilepsy 
 
 

Can I drive with epilepsy?

In this episode, we talk about epilepsy and driving, and what it means for young people. Host Ellie is joined by Chris McCarthy and Elina from Young Epilepsy’s Youth Voice Network to explore the realities of learning to drive with epilepsy - from excitement and hope to frustration, disappointment, and finding new routes to independence.
We unpack the DVLA rules around driving with epilepsy, including seizure‑free periods. The episode also looks at the emotional side of driving - how it can feel to be told you can’t drive, how this affects confidence and identity, and how young people can build independence in other ways.
With lived experience, clear guidance, and practical tips, this episode offers reassurance and support for young people, families, and professionals navigating epilepsy and driving.
NOTICE:
Epilepsy is a highly individualised condition. The information, experiences, and views shared in this podcast may not reflect those of Young Epilepsy and are not intended to replace professional medical advice. Always consult a qualified healthcare provider for personalised support.
If you’re feeling sad, worried, or lonely, text ‘PURPLE’ to 85258 to start a conversation with Shout.More info: https://www.youngepilepsy.org.uk/shout
🔗 Useful links:
https://www.youngepilepsy.org.uk/i-have-epilepsy/the-channel/travel/driving-and-epilepsy https://www.youngepilepsy.org.uk/what-we-do/voice-support/youth-support https://www.youngepilepsy.org.uk/youth-voice-network
Follow Young Epilepsy:
Facebook: http://facebook.com/YoungEpilepsyInstagram: https://www.instagram.com/youngepilepsy/YouTube: https://www.youtube.com/user/youngepilepsyLinkedIn: https://www.linkedin.com/company/young-epilepsy/TikTok: https://www.tiktok.com/@youngepilepsy
 

What I wish I knew when I was diagnosed (Audio only)

We explore what young people wish they’d known when they were first diagnosed with epilepsy. Host Olivia sits down with Jasmine and Renell from the Youth Voice Network to share honest stories about the moment of diagnosis, the fears and misconceptions they faced, and the journey to independence.
They discuss coping strategies, the importance of community, and how to break down stigma. This episode is packed with real-life experiences, practical tips, and hope for anyone navigating their own epilepsy journey.
IMPORTANT: It is important to understand that epilepsy is a highly individualised condition, and each person’s experience with epilepsy can vary significantly.
The information, experience and views shared on this podcast may not reflect those of Young Epilepsy and are not intended to replace professional medical advice, diagnosis, or treatment. Always consult with a qualified healthcare provider for personalised medical advice and support tailored to your specific needs.
If you’re sad, worried or lonely, text the word ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout
Useful links:
https://www.youngepilepsy.org.uk/abou...
https://www.youngepilepsy.org.uk/yout...
https://www.youngepilepsy.org.uk/get-...
https://www.youngepilepsy.org.uk/abou...
https://www.youngepilepsy.org.uk/firs...
https://www.youngepilepsy.org.uk/shout
https://www.youngepilepsy.org.uk/what...
Follow us:
X: https://x.com/youngepilepsyFacebook:   / youngepilepsy  Instagram:   / youngepilepsy  
YouTube:    / youngepilepsy  LinkedIn:   / young-epilepsy  
TikTok:   / youngepilepsy  
 
Contact: communications@youngepilepsy.org.uk

Diagnosis and Emerging Technologies (Audio only)

We dive into the emotional journey of getting an epilepsy diagnosis. Host Kirsten McHale chats with Professor Mark Richardson, Dr Colin Dunkley, and Spencer from the Youth Voice Network. They talk about the diagnosis process, the challenges families face, and the cool new tech that's changing epilepsy care. This episode is packed with expert advice and real-life stories to help and empower young people with epilepsy and their families.
IMPORTANT: It is important to understand that epilepsy is a highly individualised condition, and each person’s experience with epilepsy can vary significantly.
The information, experience and views shared on this podcast may not reflect those of Young Epilepsy and are not intended to replace professional medical advice, diagnosis, or treatment.
Always consult with a qualified healthcare provider for personalised medical advice and support tailored to your specific needs.
If you’re sad, worried or lonely, text the word ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout
Useful links:
https://www.youngepilepsy.org.uk/about-epilepsy/diagnosis/
https://www.youngepilepsy.org.uk/youth-voice-network
https://www.youngepilepsy.org.uk/get-involved/give-time/help-our-research
https://www.youngepilepsy.org.uk/about-epilepsy
https://www.youngepilepsy.org.uk/what-we-do/support-inclusion/youth-support 
Follow us:
X: https://x.com/youngepilepsy
Facebook: http://facebook.com/YoungEpilepsy
Instagram: https://www.instagram.com/youngepilepsy/
YouTube: https://www.youtube.com/user/youngepilepsy
LinkedIn: https://www.linkedin.com/company/young-epilepsy/
TikTok: https://www.tiktok.com/@youngepilepsy
Contact: communications@youngepilepsy.org.uk

A parent's journey with childhood epilepsy - Sarah and Lexi (Audio only)

This episode explores the emotional journey of getting an epilepsy diagnosis for children and young people. Host Kirsten McHale speaks with Sarah, who shares her personal experience as a parent navigating her daughter Lexi’s diagnosis. It’s all about sharing stories and support to help others feel less alone.
IMPORTANT: It is important to understand that epilepsy is a highly individualised condition, and each person’s experience with epilepsy can vary significantly.
The information, experience and views shared on this podcast may not reflect those of Young Epilepsy and are not intended to replace professional medical advice, diagnosis, or treatment. Always consult with a qualified healthcare provider for personalised medical advice and support tailored to your specific needs.
If you’re sad, worried or lonely, text the word ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout
Resources
Young Epilepsy website https://www.youngepilepsy.org.uk/ 
E-Cure network: https://www.youngepilepsy.org.uk/get-...
Information about epilepsy: https://www.youngepilepsy.org.uk/abou...
Young Epilepsy Youth Support Services: https://www.youngepilepsy.org.uk/what...
Follow us on socials:
X: https://x.com/youngepilepsy/
Facebook:   / youngepilepsy  
Instagram:   / youngepilepsy  
YouTube:    / youngepilepsy  
LinkedIn:   / young-epilepsy  
TikTok:   / youngepilepsy  
Contact: communications@youngepilepsy.org.uk

Hear Her Voice – Exploring the impact of epilepsy on women and girls (Audio only)

In our first LIVE episode, renowned broadcaster, Edith Bowman hosts a powerful panel discussion with Netflix and Hollyoaks actor Ellie Henry, Fashion PR Hum Fleming, and student Mariam Hussain who share their personal stories of diagnosis, school, work, memory loss, and the importance of support networks. 
We also explore the impact of epilepsy on mothers as BBC F1 host Jenny Gow, Dr Laura Cunnane and Kelly Norford open up about the challenges and resilience of families navigating epilepsy with their child. Dr. Tejal Mitchell, consultant neurologist, joins to answer questions and discuss the unique challenges facing women and girls, including hormonal changes, medication, and the transition from paediatric to adult care. 
Hear Her Voice centres the voices of women and girls living with epilepsy and is an example of how powerful a conversation can be. 
 
PLEASE NOTE: Epilepsy is a highly individualised condition, and each person’s experience can vary significantly. The information, experiences, and views shared in this podcast may not reflect those of Young Epilepsy and are not intended to replace professional medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider for personalised medical advice and support tailored to your specific needs. 
⚠️ Please proceed with care: This film discusses SUDEP (Sudden Unexpected Death in Epilepsy) and may be triggering for some viewers. 
For more information search 'SUDEP' on our website. 
If you’re sad, worried, or lonely, text the word ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout 
 
Chapters: 0:00 Introduction and Overview 2:00 Living with Epilepsy: Ellie’s Story 7:30 School, Exams, and Advocacy: Maryam’s Experience 15:00 Memory, Support, and Openness: Hum’s Journey 29:00 Mothers’ Panel: Family Life and Resilience 50:00 Coping with Loss and Finding Community: Laura’s Story 61:00 Expert Q&A with Dr. Tejal Mitchell 79:00 Audience Questions and Reflections 89:30 Closing Thoughts and Support 
 
Useful Links: 
Young Epilepsy website: https://www.youngepilepsy.org.uk/ 
Information about epilepsy: https://www.youngepilepsy.org.uk/about-epilepsy 
Seizure first aid poster: https://www.youngepilepsy.org.uk/sites/default/files/2025-02/SeizureFirstAidPosterPrinterFriendly.pdf 
Youth Voice Network: https://www.youngepilepsy.org.uk/youth-voice-network/ 
Young Epilepsy Youth Support Services: https://www.youngepilepsy.org.uk/what-we-do/voice-support/support-inclusion 
 
Social Media: 
X: https://x.com/youngepilepsy/ 
Facebook: http://facebook.com/YoungEpilepsy 
Instagram: https://www.instagram.com/youngepilepsy/ 
YouTube: https://www.youtube.com/user/youngepilepsy 
LinkedIn: https://www.linkedin.com/company/young-epilepsy/ 
TikTok: https://www.tiktok.com/@youngepilepsy/ 
Contact: communications@youngepilepsy.org.uk 
 

Joe's seizures (Audio only)

In this episode, we break down what seizures are and what they can look like. With help from healthcare professionals and real-life stories, we explain the different types of seizures in a way that’s easy to understand. Whether you’re a young person with epilepsy or a parent or carer, this episode gives you clear, helpful info and expert advice to support you on your journey.
 
PLEASE NOTE: Managing Risks Linked to Epilepsy It's crucial to understand and manage the risks associated with epilepsy. One useful tool to help with this is the EpsMon app, developed by SUDEP Action. This app can assist you in monitoring your condition and taking proactive steps to reduce risks. Remember, managing your epilepsy effectively can significantly improve your quality of life. You can find this here: https://sudep.org/about-research/epsm... It is important to understand that epilepsy is a highly individualised condition, and each person’s experience with epilepsy can vary significantly. The information, experience and views shared on this podcast may not reflect those of Young Epilepsy and are not intended to replace professional medical advice, diagnosis, or treatment. Always consult with a qualified healthcare provider for personalised medical advice and support tailored to your specific needs.
If you’re sad, worried or lonely, text the word ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout
Useful links:• https://www.youngepilepsy.org.uk/ • Information about epilepsy: Information About Epilepsy | Young Epilepsy• Epileptic seizures: https://www.youngepilepsy.org.uk/about-epilepsy/epileptic-seizures • Young Epilepsy Youth Support Services: Youth Support | Young Epilepsy• You can help - seizure types: https://www.youngepilepsy.org.uk/about-epilepsy/epileptic-seizures/you-can-help/
 
Social Media: • X: https://x.com/youngepilepsy/ • Facebook:  / youngepilepsy   • Instagram:  / youngepilepsy   • YouTube:   / youngepilepsy   • LinkedIn:  / young-epilepsy   • TikTok:  / youngepilepsy  
Contact: communications@youngepilepsy.org.uk

You’re Not Alone: Finding Support with Epilepsy (Audio only)

We talk about what it’s really like to be a young person with epilepsy. We look at why some people feel alone, how to find support, and how building a community can help. We also talk about bullying, mental health, and how to get help when you need it.
 
In this episode:
Feeling Alone: Why so many young people with epilepsy feel isolated, and what can help.
Building Community: How making friends and joining groups can make life better.
Online Support: How you can get help and join in, wherever you live.
Real Stories: Young people share how meeting others changed their lives.
Bullying and Ignorance: Why it happens, and what we can do about it.
Mental Health: Why it matters, and where to find support.
Hope: You’re not alone—there’s always someone who understands.
NOTICE:
Epilepsy is different for everyone. What works for one person might not work for another. The stories and advice in this podcast are not medical advice. Always talk to a doctor or nurse for help that’s right for you.
If you’re feeling sad, worried or lonely, text the word ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout
Useful Links:
Young Epilepsy: https://www.youngepilepsy.org.uk/
Youth Support Services: https://www.youngepilepsy.org.uk/what-we-do/support-inclusion/youth-support
Info about epilepsy: https://www.youngepilepsy.org.uk/about-epilepsy
 
Social Media:
X: https://x.com/youngepilepsy/
Facebook: http://facebook.com/YoungEpilepsy
Instagram: https://www.instagram.com/youngepilepsy/
YouTube: https://www.youtube.com/user/youngepilepsy
LinkedIn: https://www.linkedin.com/company/young-epilepsy/
TikTok: https://www.tiktok.com/@youngepilepsy/
 
Contact: communications@youngepilepsy.org.uk

Medication Advances & Challenges (Audio only)

We look at new medicines that are changing epilepsy treatment. We also talk about medication shortages and share NHS advice for health professionals on how to manage these challenges, especially around medications like Valproate.
In this episode:
Advances in Epilepsy Medications: Discussion on the most exciting emerging medicines in paediatric epilepsy care and their potential impact on patient outcomes.
Medication Shortages: Exploration of the reasons behind medication shortages and strategies for managing patient treatments effectively.
Sodium Valproate: Latest guidance on Sodium Valproate and the importance of adhering to updated treatment plans.
NOTICE: It is important to understand that epilepsy is a highly individualised condition, and each person’s experience with epilepsy can vary significantly. The information, experience and views shared on this podcast may not reflect those of Young Epilepsy and are not intended to replace professional medical advice, diagnosis, or treatment. Always consult with a qualified healthcare provider for personalised medical advice and support tailored to your specific needs. If you’re sad, worried or lonely, text the word ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout
 
Useful Links:
https://www.youngepilepsy.org.uk/
ASM booklet: https://www.youngepilepsy.org.uk/anti...
Information about epilepsy: https://www.youngepilepsy.org.uk/abou...
Young Epilepsy Youth Support Services: https://www.youngepilepsy.org.uk/what...
Social Media:
X: https://x.com/youngepilepsy/
Facebook: http://facebook.com/YoungEpilepsy
Instagram: https://www.instagram.com/youngepilepsy/
YouTube: https://www.youtube.com/user/youngepilepsy
LinkedIn: https://www.linkedin.com/company/young-epilepsy/
TikTok: https://www.tiktok.com/@youngepilepsy/ 
Contact: communications@youngepilepsy.org.uk
Thank you to the sponsors of this episode, Desitin. Find out more: https://desitinpharma.com/

MICE (Mental Health Intervention in Childhood Epilepsy) (Audio only)

We chat with Sophie Bennett about the MICE project, which focuses on mental health support for children and young people with epilepsy. Sophie, a clinical psychologist and researcher, shares how mental health support can make a big difference. We know that getting an epilepsy diagnosis can be tough, and this episode offers expert info and connection through shared experiences.
NOTICE:
It is important to understand that epilepsy is a highly individualised condition, and each person’s experience with epilepsy can vary significantly. The information, experience and views shared on this podcast may not reflect those of Young Epilepsy and are not intended to replace professional medical advice, diagnosis, or treatment.
Always consult with a qualified healthcare provider for personalised medical advice and support tailored to your specific needs.
If you’re sad, worried or lonely, text the word ‘PURPLE’ to 85258 to start a conversation with Shout. More info: https://www.youngepilepsy.org.uk/shout
Resources:
• https://www.youngepilepsy.org.uk/
• https://www.youngepilepsy.org.uk/yout...
• E-Cure network: https://www.youngepilepsy.org.uk/get-...
• Information about epilepsy: https://www.youngepilepsy.org.uk/abou...
•Young Epilepsy Youth Support Services: Youth Support | Young Epilepsy
Social Media:
X: https://x.com/youngepilepsy/
Facebook:   / youngepilepsy  
Instagram:   / youngepilepsy  
YouTube:    / youngepilepsy  
LinkedIn:   / young-epilepsy  
TikTok:   / youngepilepsy  
 
Contact: communications@youngepilepsy.org.uk