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 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

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