Let’s talk about epilepsy

Welcome to —Let’s Talk about Epilepsy - your podcast to hear real stories, expert insights, and honest conversations about life with epilepsy. Whether you’re living with epilepsy, supporting a young person who is, or just want to understand more, we’re here to help you feel informed, empowered, and connected. We bring together the voices that matter—young people, families, and experts—to share experiences, tackle challenges, and celebrate wins. Tune in and be part of something bigger!

Let’s talk about epilepsy is a health podcast hosted by Young Epilepsy, with 19 episodes on record and a Required Pod Score of 80.

Young Epilepsy hosts Let’s talk about epilepsy, a health show with 19 episodes published.

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  Episode #20

  Wait, What Was I Saying? | Effects on Memory

  Sep 29, 202631 min

  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 living with epilepsy to talk honestly about memory challenges, brain fog and the impact epilepsy and medication can have on everyday life. Together, they share personal experiences of struggling with short-term and long-term memory, forgetting important tasks, managing medication routines and coping with memory difficulties at school, work and in relationships. They also discuss practical strategies that help them stay organised, from phone reminders and calendars to creating routines and asking for support when they need it. This honest and relatable conversation highlights an often-overlooked part of living with epilepsy and reminds listeners that they're not alone if memory doesn't always work the way they'd like it to. 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 information: https://www.youngepilepsy.org.uk/shout Resources and support If you or someone you know is affected by epilepsy, Young Epilepsy is here to help: How epilepsy affects learning and behaviour: https://www.youngepilepsy.org.uk/parents-and-carers/learning-and-behaviour/impact-of-epilepsy Impact on learning: https://www.youngepilepsy.org.uk/i-have-epilepsy/the-channel/your-education/impact-learning Guide for Schools: Cognition: https://www.youngepilepsy.org.uk/guide-for-schools-epilepsys-impact-learning/guide-for-schools-cognition Mental health and wellbeing: https://www.youngepilepsy.org.uk/i-have-epilepsy/the-channel/mental-health-and-wellbeing/epilepsy-and-mental-health-wellbeing Information about epilepsy: https://www.youngepilepsy.org.uk/about-epilepsy Support for young people: https://www.youngepilepsy.org.uk/what-we-do/support-inclusion/youth-support Youth Voice Network: https://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

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  Episode #8

  Harder to manage epilepsy: moving into adult healthcare

  Sep 8, 202651 minS2

  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 at Young Epilepsy, is joined by Neil Williamson, Safeguarding Trustee at Dravet Syndrome UK and former children’s epilepsy nurse; Nicky Heenan, Children’s Neurology Nurse and joint lead on the transition section of the NHS England Epilepsy Bundle of Care; and Denise Murphy, whose daughter Lucy has Dravet syndrome. Together, they discuss what a good transition should look like, why families can encounter gaps between children’s and adult care, and how early planning, clear information and the right professional support can make a difference. Denise also shares her family’s experience of navigating specialist healthcare, funding and supported independent living. Whether you’re a young person preparing to move into adult services, a parent or carer supporting someone with complex needs, or a professional involved in transition planning, this episode offers practical information and lived experience to help you prepare. 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 information: Shout | Support Service for Young Epilepsy Support and signposting If you’re preparing to move from children’s to adult services, these resources offer further information and support: Epilepsy transition booklets: Includes resources for teenagers, Easy Read versions and booklets for parents of young people with additional needs: https://www.youngepilepsy.org.uk/blog/young-voices-shape-nhs-transition-booklets Contact’s Preparing for adult life guidance: Important information for families supporting young people with complex or additional needs, including planning, mental capacity, benefits, health and social care, housing and independent living: https://contact.org.uk/help-for-families/information-advice-services/preparing-for-adult-life/ NHS continuing healthcare: Information about eligibility, assessments and NHS-funded support for adults with long-term complex health needs: https://www.nhs.uk/social-care-and-support/money-work-and-benefits/nhs-continuing-healthcare/ SCN1A/ Horizons Natural History Study: Information about research involving people with Dravet syndrome and other SCN1A-related epilepsies: https://www.dravet.org.uk/healthcare-professionals/insight-articles/article-scn1a-horizons-natural-history-study/ National Hospital for Neurology and Neurosurgery at Chalfont: Information about its specialist epilepsy services: https://www.uclh.nhs.uk/our-services/our-hospitals/national-hospital-neurology-and-neurosurgery/NHNN-chalfont 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

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  Episode #19

  Venting

  Aug 18, 20260 min

  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/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

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  Episode #18

  Harder to Manage Epilepsy: Could VNS Therapy Help?

  Jul 21, 202633 min

  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

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  Episode #5

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

  Jun 30, 20261h 23mS2

  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

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