Inflammatory!

In typical Inflammatory! style, Debbie and Katy somehow make even the dullest topic, NHS admin, funny, relatable, and full of those “only happens to us” moments. This episode dives into the hidden admin burden patients face when navigating NHS care - from missing paperwork and broken digital systems to long waits, confusing referrals, and the emotional toll of chasing appointments. They share honest, often hilarious, often frustrating real‑life stories that show how poor admin impacts treatment, family life,mental health, and flare management. They also explore new research from The King’s Fund, Healthwatch England and National Voices, and discuss what needs to change to make care safer, smoother, and more humane… ideally before any of us lose the will to live in another hospital phone queue.

Key words: inflammatory arthritis, NHS admin burden,lost in the system, patient experience, rheumatology, long‑term conditions,healthcare communication, NHS digital systems, waiting lists, blood tests,steroid injections, chronic illness advocacy, National Voices, King’s Fund report

Key Topics Covered

•  Admin failures delay care

• Why NHS paperwork, referrals and digital systems break down, and how this affects patients with long‑term conditions
• The King’s Fund / Healthwatch England / National Voices report on admin problems and patient safety
• Blood test chaos codes that don’t work, missing forms, slow systems, and parking nightmares
• The emotional and physical toll of admin
• Why people with multiple conditions are hit hardest
• How communication failures ripple out to families, work, and mental health
• Why simple fixes, like calendar integration, would make a huge difference
• The role of charities like IAUK
• What other countries do differently,
• The importance of continuity of care for chronic conditions

Standout moments:

“I’ve been on a waiting list for over four years… and at one point they wouldn’t see me because they didn’t have the right paperwork.”

“Forty‑four percent of people with admin issues just give up. And honestly, I get it.”

“You shouldn’t have to psych yourself up to make a phone call just to get the care you need.”

“What you see is the tip of the iceberg - not everything going on underneath.”

Useful resources:

Lost in the System: The Need for Better Admin –King’s Fund, Healthwatch England & National Voices report

 NHS App – forappointments, NHS number, and test results (when it works!)

 IAUK –support, advocacy, and community for people with inflammatory arthritis

Stay connected:

Have your own admin nightmare story? Want to share how healthcare works in your country? Email [email protected]or join the conversation on our social channels.

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/

Summary

Inflammatory arthritis doesn’t just affect the person living with it, it reshapes the daily lives, emotions, plans, and futures of the people who love them. In this heartfelt episode, Debbie and Katy explore the hidden impact on partners, children, siblings, and wider family members. Drawing on powerful listener submissions, they discuss the emotional load, the financial strain, the invisible nature of the condition, and the resilience that families build together.

As Debbie notes, “our life revolves around how she feels that day… everything from plans to simple things like going for a walk dependso n pain levels.” And as one listener shared, “it’s been hard, but it’s also brought us closer together in ways I didn’t anticipate.”

This episode is honest, validating, and deeply human, a reminder that chronic illness is always a family story.

Keywords

inflammatory arthritis, family impact, chronic illness,relationships, partners, care giving, fatigue, invisible illness, financial planning, resilience, emotional wellbeing, IA community, lived experience

Key Topics Covered

• The unseen emotional load on families
• The invisibility problem
• Daily life shaped by pain and fatigue.
• Financial and retirement planning challenges
• Identity, independence, and shifting roles
• Resilience and unexpected closeness
• Communication as the anchor
• Letting loved ones live their lives too
• The need for better support for families

Stand out Insights

• “Our life revolves around how she feels that day… everything depends on pain levels.”

• “Sometimes I don’t know whether to encourage her to push through or tell her to rest. I worry about getting it wrong.”

• “It’s been hard, but it’s also brought us closer together in ways I didn’t anticipate.”

Useful Resources Mentioned

• Citizens Advice — guidance on benefits, employment rights, and financial planning
• PIP & Universal Credit — support options for people living with long‑term conditions
• IAUK Newsletter — updates on research, events, and community stories
• IAUK Social Channels — Facebook, LinkedIn, Instagram, BlueSky
• Email — [email protected]

Stay Connected

Join the conversation, share your experiences, and help us shine a light on the realities families face. Sign up for updates at inflammatoryarthritis.org and follow us on social media.

This episode was funded by UCB, who had no involvement in the development of the content or any associated materials.

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/

In this powerful and deeply human conversation, Debbie andKaty sit down with Andy Kelly - physiotherapist, patient advocate, EULAR representative, and trustee of Inflammatory Arthritis UK to explore what it really means to live with psoriasis and psoriatic arthritis.

Andy shares his journey from first symptoms at university,through years of misdiagnosis, to navigating the emotional and physical realities of a fluctuating autoimmune disease. He opens up about stigma, parenting with a long‑term condition, the impact of flares, and the transformative role of psychological support after an incident at a local swimming pool left him in a bad place. He also reflects on his work in research, patient advocacy, and the growing movement to involve lived experience in shaping future priorities.

This episode is full of honesty, humour, and practical wisdom, from navigating treatment pathways to understanding fatigue, exercise, and self‑compassion.

Key Topics Covered

• Andy’s early symptoms and long road to a psoriasis diagnosis

• How psoriatic arthritis developed and why he didn’t recognise the signs

• The emotional impact of visible skin disease, including a painful experience at a swimming pool

• The role of dermatology–rheumatology joint clinics

• How psychological support helped him accept his diagnosis

• Starting biologics and navigating treatment options

• Living with flares: unpredictability, pain, fatigue, and the challenge of “looking fine”

• Parenting with a long‑term condition and supporting children who develop psoriasis

• Exercise, movement, and the realities of managing energy

• Andy’s work with BRITPACT, the Psoriasis Association, EULAR, and the James Lind Alliance

• Why patient involvement in research is changing the landscape

• The importance and difficulty of self‑compassion

  Standout moments:

• “Psychological support was a game changer — accepting what it was, accepting the diagnosis.”

• “You don’t look ill… but I’m in agony.”

• “Self‑compassion is the hardest thing. If you don’t slow down, it will make you.”

Resources & Links 

• • James Lind Alliance https://www.jla.nihr.ac.uk/
  • Inflammatory Arthritis UK: inflammatoryarthritis.org

• Follow us on BlueSky, Instagram, LinkedIn, and Facebook

• Sign up for our newsletter for updates, stories, and community events

This episode was funded by UCB, who had no involvement in the development of the content or associated materials.

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/

This week, Debbie and Katy sit down with the brilliant and endlessly determined Charlie Robards, who was diagnosed with axial spondyloarthritis at just 18 - right as he was chasing his dream of becoming a professional sportsman. Now 50, Charlie reflects on three decades of navigating pain, ambition, parenting, relationships, and the emotional weight of a lifelong condition.What unfolds is an honest, funny, and deeply human conversation about resilience, identity, and the surprising places we find strength. Charlie’s story is a reminder that life doesn’t always go to plan, but it can still be full, joyful, and meaningful.“I am who I am, work with what you’ve got rather than fight to be something you’re not.”Key topics:

• Impact of being diagnosed at 18
• Sport as a lifeline
• Flares, pain & the hot/cold debate
• Weather, mood & mobility
• Talking to partners, friends & coaches
• Parenting with AxSpA
• Mental health & suppressed emotions
• Biologics & uveitis
• Writing Hitting AS for Six
• Advice to his younger self

Key words: Axial spondyloarthritis, AxSpA, ankylosing spondylitis, chronic pain, sport and disability, cricket, resilience, uveitis, biologics, flare management, men’s mental health, invisible illness, parenting with chronic illness, acceptance, pacing, inflammation, NASS, lived experience.Resources and links:

• National Axial Spondyloarthritis Society (NASS)
• Inflammatory Arthritis UK (IAUK) — resources, stories, and support
• Newsletter sign-up: inflammatoryarthritis.org
• Find us on BlueSky, Instagram, Facebook & LinkedIn

This episode was funded by UCB, who had no involvement in the development of the content or any associated materials.

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/

In this special 50th episode, Debbie and Katy celebrate how far the podcast has come while shining a light on an often‑missed reality: children and young people do live with rheumatic and inflammatory diseases. Recorded on World Young Rheumatic Diseases Day, the episode blends lived experience with practical insight, from delayed diagnoses and complex referral pathways to the hidden admin burden families face when navigating paediatric rheumatology and the wider NHS system. They discuss the impact on siblings, the importance of being heard, and how empowering young people can transform their confidence and their experience of illness. Honest, relatable, and thought‑provoking, this episode is a reminder that behind every diagnosis is a whole person and a story worth hearing.

Key topics:

• WORD Day and raising awareness of paediatric rheumatic diseases

• Misconceptions around childhood joint pain and “growing pains”
• Tertiary centre is a highly specialized hospital providing advanced treatments for complex or rare conditions, typically requiring a referral from primary (i.e. GP) or secondary care (i.e. local hospitals)
• Delayed diagnosis and challenges in paediatric rheumatology pathways
• The hidden admin burden on patients and parents
• Impact on siblings and family life
• Parental wellbeing and avoiding burnout
• Using technology and AI to support disease management
• Empowering young people to speak up in healthcare settings
• Debbie’s visit to the House of Commons and meeting children with JIA
• Encouraging movement and sport for MSK and mental health
• Preview of next week’s guest, author Charlie Robards

Key words: juvenile idiopathic arthritis, JIA, WORD Day, paediatric rheumatology, childhood arthritis, young people rheumatic diseases, inflammatory arthritis podcast, NHS admin burden, chronic illness parenting, early diagnosis arthritis, rheumatology awareness, lived experience arthritis, Inflammatory Arthritis UKResources:

• WORD Day – World Young Rheumatic Diseases Day
• ARMA (Arthritis and Musculoskeletal Alliance) – Movement policy paper
• National Axial Spondyloarthritis Society (NASS) – Beneficiary of Charlie Robards’ book
• Previous episodes referenced:
• Episode 11 – Parenting a child with JIA
• Episode with 49 with Dr Keith Grimes

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/

In this insightful interview, Dr. Keith Grimes, a former GP and digital health innovator, explores the transformative potential of AI in healthcare. From data sharing and patient access to AI-driven diagnostics and drug discovery, discover how AI can revolutionize patient care while emphasizing safety and privacy.

 Key Words: AI in healthcare, digital health, patient data, medical innovation, AI diagnostics, healthcare technology, data privacy, NHS, medical AI tools, NHS App

Key Topics

• What artificial intelligence actually means in healthcare
• How AI tools like machine learning and large language models work
• Why healthcare data is often fragmented across multiple systems
• The role AI could play in reducing GP and hospital administration
• How wearable devices and health apps could support personalised care
• How AI is speeding up medical research and drug discovery
• Why patient access to medical records is important
• How to safely use AI tools like ChatGPT with health information

Key comments:

“Healthcare data isn’t one big database; it’s stored in lots of separate systems.”

“The more accurate information AI has, the better it can help but privacy must be protected.”

“AI could help identify which medications will work best for a patient much earlier.”

“We’re entering a time where science and medicine could move much faster.”

How to Connect with the Podcast Website:
Inflammatory Arthritis – https://inflammatoryarthritis.org

Social Media:Facebook, Instagram, BlueSky, LinkedIn

Follow, like, and share to continue the conversation around inflammatory arthritis, healthcare innovation, and patient experiences.

Newsletter:Sign up via the website

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/

Why do so many people with inflammatory arthritis say “I’m fine” when they’re not? In this episode, Debbie and Katy reflect on masking pain, stress-triggered flares, and the emotional impact of diagnosis. They discuss how overwhelming early treatment decisions can be, why people diagnosed young often feel embarrassed talking about it, and how hearing others’ perspectives can reveal what friends and family don’t always see.

They also highlight the importance of community, from role models like Kathleen Turner to the online spaces helping people feel less alone, and share updates from Inflammatory Arthritis UK ahead of the British Society for Rheumatology conference.

Key words

Inflammatory arthritis, autoimmune disease, masking pain, invisible illness, community, diagnosis, medication, shielding, family impact, mental health, stress, flare-ups, rheumatology, social prescribing, physiotherapy, lived experience, charity work

Key topics

• Masking pain and pretending to be “fine”

• The impact of stress and life changes on flare-ups

• Diagnosis overwhelm and medication fears

• Forgetting trauma as a coping mechanism

• Embarrassment and stigma around young diagnosis

• Shielding during COVID and explaining immunosuppression

• The power of online communities

• Representation and role models

• The impact of inflammatory arthritis on family members

• Supporting healthcare professionals and fitness professionals with education

• Building a charity rooted in lived experience

Key Takeaways

• “Every time we say we’re fine, actually we’re not.”

• Diagnosis is overwhelming — physically and emotionally.

• Community doesn’t have to be in person.

• Being believed can be life-changing.

• Family members are impacted too — and their voices matter.

 Upcoming Episode – We Want to Hear From You

We’re planning an episode focused on the family perspective.

• Are you a partner, parent, sibling, or friend of someone with inflammatory arthritis?

• How has it impacted you?

• What questions do you have?

• What support would help you?

All responses can be anonymous.

Email us: [email protected] or DM us on social media

Connect with us Website: InflammatoryArthritis.org
Email: [email protected]
Follow us on: Facebook, LinkedIn, BlueSky & Instagram
Don’t forget to rate, follow & download the podcast wherever you listen

Sign up to our newsletter for episode updates, IA news, research, and events.

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/

In this powerful episode of Inflammatory!, Debbie and Katy are joined by Hansa, who was diagnosed with rheumatoid arthritis at just 19 years old while at university.

Hansa shares her journey of navigating diagnosis alone,hiding her condition at work, managing pregnancy and motherhood with inflammatory arthritis, and finally finding relief through biologic treatment.

An honest and relatable conversation about pain, resilience,cultural expectations, self-advocacy, and raising empathetic children while living with an invisible illness.

Keywords

Rheumatoid arthritis, inflammatory arthritis, autoimmune disease, young diagnosis, university diagnosis, chronic illness, invisible illness, biologics, pregnancy and arthritis, motherhood with chronic illness, strength training, self-advocacy, NHS rheumatology, flare ups, chronic pain, Asian cultural expectations, arthritis support, biologic medication, autoimmune parenting

Key Topics Covered

• Being diagnosed with rheumatoid arthritis at 19

• Feeling lost after diagnosis and receiving little information
• Cultural stigma and keeping illness private
• Hiding chronic illness at university and in the workplace
• Dating, relationships, and fears about acceptance
• Pregnancy with inflammatory arthritis
• Managing flares while raising young children
• The impact of biologic medication and finding the right treatment
• The emotional toll of “just coping” with chronic pain
• Learning to speak up and advocate for yourself
• Raising children to understand invisible illness
• Strength training and movement for joint health
• The importance of community and shared stories

Memorable takeaways

• “I hid it from people, and I hid it from myself.”
• Pain became “normal” until the right medication changed everything.
• Speaking up earlier is something Hansa wishes she had done.
• Children raised around chronic illness often develop deep empathy and understanding.
• You shouldn’t have to justify yourself for having an autoimmune disease.

Connect with us

Sign up to our newsletter at inflammatoryarthritis.org
Follow us on Instagram, Facebook, LinkedIn, BlueSky
 Watch episodes on YouTube
🎧 Follow, rate & download the podcast wherever you listenIf this episode resonated with you, please share it with someone who may need to hear it. Stories like Hansa’s remind us that we are not alone and that life with inflammatory arthritis can still be full of strength, growth, and joy.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/

In this episode of Inflammatory!, Debbie and Katy are joined by Katy’s close friend Cat for an honest and heartfelt conversation about love, friendship, and living with chronic illness. Together, they reflect on the evolution of their friendship, the realities of navigating inflammatory arthritis, how it felt to see your closest friend physically struggle, and the power of communication, humour, and support. Through shared memories and personal stories, they explore how diagnosis can reshape relationships and why awareness and understanding matter more than ever.Key topics:

• The theme of the month is love, friendship, and chronic illness.

• Friendship can evolve from work colleagues to lifelong companions.
• Understanding inflammatory arthritis requires open communication and education.
• Memories from shared experiences can highlight the onset of symptoms.
• Navigating a diagnosis can be challenging without clear communication.
• Chronic illness impacts relationships and requires support from friends.
• Hindsight often reveals what we wish we had known during difficult times.
• Supportive friendships are crucial for those living with chronic illness.
• Celebrating achievements despite challenges is important.
• Continuing the conversation about chronic illness helps raise awareness.

Sound bites

• "I definitely think fun."

• "You deal with things with humour."
• "I think it was quite a shock."

Connect with us

• Website: inflammatoryarthritis.org
• Newsletter: Sign up on the website
• Socials: BlueSky, Instagram, Facebook, LinkedIn

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.

Keywords

chronic illness, inflammatory arthritis, support networks,medication management, health transparency, empathy, friendship, diagnosis,patient experience, healthcare

Summary

In this episode of Inflammatory! the hosts reflect on how stress, relationships, and chronic illness shape everyday life. Including the realities of moving house while managing refrigerated medication, highlighting the extra planning people with inflammatory conditions must navigate. They revisit last week’s guest, Haffy, and her experience of being diagnosed with inflammatory arthritis while pregnant and what that means for decision-making and self-advocacy.

A key theme is frustration with NHS systems and the lack of easy access to personal blood test results, despite growing calls for shared decision-making in healthcare.

With February’s theme of love, friendship, and chronic illness, Debbie and Katy discuss how living with inflammatory arthritis affects relationships, including:

Key topics:    

• Managing medications during a move can be stressful.

• Support networks are crucial for those with chronic illnesses.

• Transparency in medical data is essential for patient empowerment.

• Explaining chronic illness to friends requires honesty and openness.

• Empathy is key in understanding the challenges of chronic illness.

• It’s important to recognize true friends during difficult times.

• Chronic illness can change social dynamics and friendships.

• Patients should have access to their medical information.

• Living with chronic illness involves a continuous learning process.

• Finding a supportive community can greatly enhance the patient experience.

Sound bites

"Why can't we see our blood test results?"

"It's a new life. It's a new chapter."

Connect with us

• Website: inflammatoryarthritis.org

• Newsletter: Sign up on the website

• Socials: BlueSky, Instagram, Facebook, LinkedIn

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/