Let’s talk about epilepsy

What really frustrates young people about living with epilepsy?
In this honest and unfiltered episode of Let's Talk About Epilepsy, host Cam is joined by members of Young Epilepsy's Youth Voice Network: Hattie, Sophie and Spike. Together, they create a safe space to vent about the realities of living with epilepsy and the challenges that often go unseen.
From lack of understanding in schools and workplaces to navigating friendships, dating, independence and public transport, the conversation shines a light on the barriers, misconceptions and frustrations that many young people with epilepsy face every day.
Our guests share personal experiences of being excluded from activities, struggling to access the right support, managing medications, dealing with stigma, and fighting for their voices to be heard. They also discuss the importance of good support networks, self-advocacy and connecting with others who understand what life with epilepsy is really like.
While some of the topics discussed are challenging, this episode is full of humour, resilience and encouragement for other young people living with epilepsy.
⚠️ Trigger warning: This episode contains discussion of seizures, discrimination, mental wellbeing challenges, medication side effects and SUDEP (Sudden Unexpected Death in Epilepsy).
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
🔗 Support and signposting
Information about epilepsy: https://www.youngepilepsy.org.uk/about-epilepsy
Youth Voice Network: https://www.youngepilepsy.org.uk/get-involved/youth-voice-network Support for young people and families: https://www.youngepilepsy.org.uk/support-and-services
The Channel - A space for young people, aged 13+, who are living with epilepsy, for them to share, learn and find support: https://www.youngepilepsy.org.uk/i-have-epilepsy/the-channel
📲 Follow Young Epilepsy:
Facebook: http://facebook.com/YoungEpilepsyInstagram: 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 

In this episode of the Young Epilepsy Podcast, we explore Vagus Nerve Stimulation (VNS) therapy and how it can help children and young people with harder to manage epilepsy.
Host Kirsten McHale, Head of Healthcare at Young Epilepsy, is joined by Dr Das, Paediatric Consultant Neurologist at Great Ormond Street Hospital, and Hattie, a member of the Youth Voice Network who has been living with a VNS device for several years. Together, they explain how VNS works, who it might be suitable for, and what life is really like with the device. Whether you're considering VNS therapy yourself, supporting a young person with epilepsy, or simply want to understand more about treatment options, this episode provides expert information alongside real-life experience.
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
 
🔗 Support and signposting
If you'd like to learn more about VNS therapy or other treatment options for epilepsy:
Visit the Young Epilepsy website for trusted information and support: https://www.youngepilepsy.org.uk/about-epilepsy/treatments
Find out more about Young Epilepsy Youth Support: https://www.youngepilepsy.org.uk/what-we-do/support-inclusion/youth-support
Join the Youth Voice Network: https://www.youngepilepsy.org.uk/youth-voice-network 
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 

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 episode discusses SUDEP (Sudden Unexpected Death in Epilepsy) and includes references to bereavement and loss, which may be distressing for some listeners. For more information: https://www.youngepilepsy.org.uk/about-epilepsy/sudden-unexpected-death-in-epilepsy-sudep
If you’re feeling sad, worried or lonely, text the word ‘PURPLE’ to 85258 to start a conversation with Shout. More info: Shout support service: https://www.youngepilepsy.org.uk/shout/ In this special live episode, actress and Young
Epilepsy supporter Ellie Henry and broadcaster Jennie Gow host a series of powerful conversations bringing together women, young people and families to share their experiences of epilepsy.
We hear deeply personal stories from Young Epilepsy ambassador Sam Bailey and autism and epilepsy advocate Holly Steer, who open up about the reality of supporting children with epilepsy, from diagnosis to navigating complex needs and daily life.
The conversation continues with young people sharing their own journeys. Youth Voice Network member Elina reflects on growing up with epilepsy and the pressures of feeling different, while Olivia speaks about independence, education and managing epilepsy through key life milestones.
In a powerful mothers’ panel, Nicole Ronson Allalouf, Clare Scheckter and Emma O’Brien share honest and emotional accounts of caring for children with complex epilepsy, highlighting the challenges families face across healthcare, education and wider support systems.
Throughout the episode, we explore the emotional realities of epilepsy, the importance of being heard, and the strength that comes from shared experience and community. Hear Her Voice centres the voices of women and girls living with epilepsy and shows just how impactful it can be when those voices are heard.  ________________________________________
Useful Links:
Young Epilepsy website: https://www.youngepilepsy.org.uk/
SUDEP information: https://www.youngepilepsy.org.uk/about-epilepsy/sudden-unexpected-death-in-epilepsy-sudep
Information about epilepsy: https://www.youngepilepsy.org.uk/about-epilepsy
Youth Voice Network: https://www.youngepilepsy.org.uk/youth-voice-network
Young Epilepsy Youth Support Services: https://www.youngepilepsy.org.uk/youth-support
________________________________________
Social Media:
Facebook: https://www.facebook.com/YoungEpilepsy/
Instagram: https://www.instagram.com/youngepilepsy/
YouTube: https://www.youtube.com/young%20epilepsy
LinkedIn: https://www.linkedin.com/company/young-epilepsy/
TikTok: https://www.tiktok.com/@youngepilepsy
Spotify: https://open.spotify.com/show/0Rd6NvABed0T1gvQGYju0x?si=ddb31e5b7a774664
Contact: communications@youngepilepsy.org.uk

In this episode, host Dr Lara Carr is joined by Professor Helen Cross and Tanisha from the Youth Voice Network to talk about epilepsy brain surgery. They explain when surgery might be considered, what the process involves, and how it can change a young person’s life, alongside real reassurance and support for families.
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
Visit the Young Epilepsy website for trusted information: https://www.youngepilepsy.org.uk/about-epilepsy/treatments/neurosurgery Contact Young Epilepsy
Youth Support Services: https://www.youngepilepsy.org.uk/what-we-do/voice-support/youth-support
Look for peer support from others with lived experience: https://www.youngepilepsy.org.uk/youth-voice-network
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 

In this episode, Ree is joined by Milla, a young person with epilepsy, and her brother Harry to talk honestly about sibling experiences. They share what it’s like growing up with epilepsy in the family, the emotional impact on siblings, and why support and understanding matter for everyone.
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:
Visit the Young Epilepsy website for information and support: https://www.youngepilepsy.org.uk/what-we-do/voice-support/youth-support
Find out more about the Youth Voice Network and peer support: https://www.youngepilepsy.org.uk/youth-voice-network
How to respond to seizures: https://www.youngepilepsy.org.uk/about-epilepsy/epileptic-seizures/how-can-i-help-someone-having-seizure
Safety equipment for seizures: https://www.epilepsy.org.uk/living/safety-equipment 
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

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 
 
 

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
 

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

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

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