Introduction to: Harder to Manage 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:

📢 Follow Young Epilepsy:

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Episoder(21)

Keto and epilepsy: More than just a diet | Harder to manage epilepsy

Keto and epilepsy: More than just a diet | Harder to manage epilepsy

This episode focuses on the ketogenic diet as a treatment for epilepsy, particularly drug-resistant epilepsy. We explore what medical ketogenic diet therapy is, how it works and what starting and foll...

21 Okt 1h 19min

Wait, What Was I Saying? | Effects on Memory

Wait, What Was I Saying? | Effects on Memory

How does epilepsy affect memory, and what can help when you're constantly forgetting things? In this episode, host Scarlett is joined by former Youth Voice Network member Annie and a young person liv...

30 Sep 31min

Harder to manage epilepsy: moving into adult healthcare

Harder to manage epilepsy: moving into adult healthcare

In this episode of the Young Epilepsy Podcast, we explore the transition from children’s to adult services for young people with harder-to-manage epilepsy. Host Joe Paternoster, Assistant Psychologist...

9 Sep 50min

Venting

Venting

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 Netwo...

19 Aug 10s

Harder to Manage Epilepsy: Could VNS Therapy Help?

Harder to Manage Epilepsy: Could VNS Therapy Help?

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 ...

22 Jul 32min

Hear Her Voice 2026 – Exploring the impact of epilepsy on women and girls

Hear Her Voice 2026 – Exploring the impact of epilepsy on women and girls

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...

1 Jul 1h 22min

Brain Surgery: Harder to Manage Epilepsy

Brain Surgery: Harder to Manage Epilepsy

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...

3 Jun 25min

Epilepsy and Us: Sibling Stories

Epilepsy and Us: Sibling Stories

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 famil...

13 Mai 1h 12min

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