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68. “Every Life Matters” – an extraordinary conversation with Benedicte Symcox
Manage episode 491409339 series 2981270
🎙 “You’re amazing!” But what if hearing that doesn’t feel amazing at all?
In this powerful and deeply moving episode, Gill Phillips meets awesome Benedicte Symcox – parent carer, founder of Tugboat SEND Navigation, and passionate advocate for children and adults with complex needs.
Benedicte’s story is breathtaking. From the moment they met at Yvonne Newbold’s wedding (!), Gill and Benedicte struck up an instant connection – and this podcast brings it to life. With wisdom, humour, brutal honesty, and astonishing lived experience, Benedicte takes us on a journey through parenting three very different children – each with their own profound challenges and triumphs.
🎧 Expect to hear:
- The rollercoaster of navigating health, education, and social care systems
- Teenage mental health, neurodiversity, and diagnostic overshadowing
- Raw conversations about suicide, resilience, and “extreme parenting”
- How Benedicte’s lived experience powers her work supporting other families through Tugboat
- Why kindness, curiosity and valuing every life are non-negotiables in a broken system
This episode goes live in #CoProductionWeek - the week that #MPFTWhoseShoes, the extraordinary Whose Shoes journey to better support children and families, is showcased in Staffordshire.
With her signature wit and passion, Benedicte reminds us why real voices matter.
This is one for the ninja parents, the professionals trying to do better, and anyone who wants to understand what truly matters.
🍋💡🍋 Lemon lightbulbs
🍋 Every life matters – regardless of age, ability, or achievements.
🍋 Stay curious, be kind
🍋 No one’s coming to save you – a tough truth from Yvonne Newbold that hits hard but empowers families to take action
🍋 Value doesn't come from capability – our culture must stop measuring people’s worth by what they can do or produce
🍋 You can't fix what you don't truly see – honest, raw stories like Benedicte’s open eyes and hearts
🍋 Children with complex needs are not always ‘inspirational’—they’re human.
They get stroppy, funny, scared, brilliant... just like any child
🍋 Diagnostic overshadowing destroys lives – assuming one label explains everything leads to devastating gaps in support
🍋 We need to talk about suicide – actually talk about it – no euphemisms, no sidestepping. Say the word. Save lives.
🍋 Professionals are often also parent carers : dual perspective
🍋 Honesty matters more than heroics – saying “this is hard” is more powerful than pretending to cope
🍋 Sometimes kindness means saying uncomfortable things
🍋 Honest conversations are vital – especially around 'taboo' topics : sex, disability, parenting, mental health
🍋 Parenting doesn’t come with guarantees – ‘success’ can mean just surviving another day
🍋 Systems should support families, not punish them – blaming parents, gatekeeping support, and making people fight for help is not acceptable.
🍋 Hope lives in connection – whether through a podcast, a wedding, or a kindness conversation, real change starts with human stories
Links
Tugboat SEND Navigation – Steering you through SEND waters
Please visit the episodes with Cath Crock, Bob Klaber and Steven Russell
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I tweet as @WhoseShoes and @WildCardWS and am on Instagram as @WildCardWS.
Please recommend 'Wild Card - Whose Shoes' to others who enjoy hearing passionate people talk about their experiences of improving health care.
Chapters
1. Welcome & connections - Gill introduces Benedicte, sharing how they met at Yvonne Newbold’s wedding and their instant connection (00:00:00)
2. Jumping in with both feet - Benedicte explains her rapid connection to Whose Shoes, her work supporting families, and the importance of seeing every perspective (00:03:52)
3. A family story begins - we hear how Benedicte’s journey unfolded - an “easy” start to life, then parenting three children with very different and complex needs (00:06:49)
4. A sudden health crisis - the emotional account of B's youngest son’s sudden hospital admission and the traumatic early years navigating serious illness (00:09:07)
5. 11:23 – From France to the NHS - navigating two health systems, rare diagnoses, and the beginning of a lifelong rollercoaster of care (00:11:23)
6. How “Little” survived beyond all predictions - now living a life full of unexpected milestones (00:13:29)
7. When autism meets despair: a brutally honest account of her eldest son’s suicidal ideation at six years old and the reality of raising a bright, misunderstood child (00:15:14)
8. Benedicte introduces her daughter, Kez - the 'delicate hand grenade' - fierce, funny, and navigating mental health, ME/CFS, autism, ADHD, and early motherhood (00:17:33)
9. Kez’s journey to living independently, becoming a mother, and navigating adult life with strength and spirit (00:21:27)
10. When systems stop - the gaps in adult services and how families must find creative, community-based solutions to survive (00:25:47)
11. Personal trainers vs. physiotherapy - flipping the system - how Benedicte reframed health support using personal training when formal services fell short (00:27:44)
12. Brutal questions, deep love - the ethics, reality, and heartbreak of parenting disabled children, including the unspoken questions around prenatal testing and quality of life (00:30:08)
13. Honest conversations save relationships: a deeply personal story about marriage under pressure and the need to say the hard thing before silence takes over (00:34:55)
14. You’re amazing? Really? Benedicte challenges the 'hero parent' narrative - what happens when people say you’re amazing, but you’re just surviving (00:36:14)
15. Privilege, grit & gaps - a reflection on how education, income, and time make a difference—and why some families are left behind (00:40:08)
16. Sex, TikTok & real Talk - opening conversations others avoid - about sex, parenting, and saying “suicide” out loud (00:43:06)
17. Floofy dresses & fierce honesty - how being unexpected - small, quirky, outspoken - can be a powerful tool for truth-telling and changing minds. (00:45:20)
18. ADHD as a learning disability? Benedicte describes the challenges of navigating maternity care for women with neurodiversity, and the stigma that still exists (00:49:03)
19. Tugboat: Helping people help themselves - a teaser for Episode 2! Benedicte introduces Tugboat, her work helping families navigate systems and reclaim power (00:52:53)
20. Final reflections & lemon lightbulbs - kindness, curiosity, and valuing every person - Gill and Benedicte reflect on the deep messages from this conversation (00:55:11)
21. Invitations and next steps - Gill invites Benedicte to the Kindness Conversations - and the beginning of many more connections (00:56:41)
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