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In this powerful and deeply human conversation, Debbie and Katy sit down with Dr Simon Stones, award‑winning medical communications specialist, internationally recognised patient advocate, and Chair of the EULAR PARE Committee. Diagnosed with juvenile idiopathic arthritis (JIA) at just three and a half, Simon shares his journey from childhood symptoms and difficult treatments to becoming one of the most influential voices in patient engagement.
He talks candidly about growing up with chronic illness, the emotional impact of treatment, school experiences, his mother’s influence, and how lived experience became the foundation of his global advocacy work. Simon also reflects on grief, pacing, humour, relationships, and why he believes in doing things now rather than waiting for “one day”.
This episode is full of honesty, warmth, and wisdom, a must‑listen for anyone living with inflammatory arthritis, caring for someone who is, or working in healthcare.
Key Topics
- Early signs of JIA and the diagnostic journey
- The role of Simon’s mum and her own autoimmune conditions
- Oligoarticular vs polyarticular JIA
- Severe treatment side effects and tablet phobia
- School experiences, adaptations, and supportive teachers
- Transitioning from paediatric to adult rheumatology
- Discovering patient advocacy at 18
- The value of lived experience in research and policy
- International advocacy through EULAR
- Balancing work, health, travel, relationships, and caring responsibilities
- Grief, perspective, and “doing things while you can”
- Humour, identity, and embracing difference
Quotes
“I didn’t realise the value of lived experience as expertise, but it’s one of the most important things in the room.”
“I would sooner be in a wheelchair than take that tablet. That’s how bad it was.”
“We’ve got one chance at life. Make the most of it, regardless of what’s thrown at you.”
“If people don’t accept who I am and what I need, they’re not the right people to be in my life.”
“Don’t wait. If you have the opportunity to do something, just do it.”
Resources Mentioned
- EULAR PARE Committee: European patient organisations working together to improve rheumatology care
- Clinical Studies Groups (UK): patient‑partner involvement in research
- Involve Conference: UK public involvement in research
- Simon’s Instagram: @simonrstones
- Follow Inflammatory Arthritis UK on Facebook, Instagram, YouTube, Linkedin and Bluesky
- Sign up to IAUK newsletter at inflammatoryarthritis.org
Keywords: juvenile idiopathic arthritis, JIA, patient advocacy, lived experience, EULAR, childhood arthritis, autoimmune disease, chronic illness, polyarticular JIA, oligoarticular JIA, methotrexate nausea, transition to adult care, patient engagement, rheumatology, inflammatory arthritis podcast, Simon Stones
Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys, and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content. For more information, head to https://inflammatoryarthritis.org/
