What's the Human Side of Inflammatory Arthritis?

What's the Human Side of Inflammatory Arthritis?

Debbie and Katy sit down after a whirlwind few weeks, including their first ever live podcast event, a national conference, and even a little “pod‑adultery” (appearing on someone else’s podcast). They reflect on the nerves, the joy, and the powerful audience reactions during the live show, where themes like shame, disclosure, grief after diagnosis, and identity came through strongly. The pair also dive into the everyday realities of living with inflammatory arthritis, opening up about the often-invisible challenges behind simple daily tasks like washing and brushing hair, cycling, and managing pain and fatigue. They also discuss concerns around digital-only NHS healthcare pathways, the importance of pacing and rest, and share updates on upcoming IAUK plans, including the return of live Q&As and volunteer opportunities.Key topics: * First live podcast experience and audience reactions * “Pod‑adultery” — appearing on Mel Brooks’ PSA HQ podcast * Common themes: shame, disclosure, grief after diagnosis * Everyday challenges: hair care, cycling, makeup, pain management * NHS App + NHS Online Trust concerns and digital‑only healthcare * Stress, pacing, grief, and taking time off * Weather changes, flares, sun safety on biologics * IAUK updates: live Q&A plans, Volunteers Week, newsletter and socials Key words: inflammatory arthritis, psoriatic arthritis, chronic illness, live podcast, patient stories, NHS App, NHS Online Trust, digital healthcare, arthritis fatigue, arthritis pain, biologics sun safety, chronic illness grief, disability disclosureResources: * PSA HQ Podcast with Mel Brooks — episode coming June * IAUK Newsletter & Website: inflammatoryarthritis.org * IAUK Socials: Instagram, Facebook, LinkedIn, BlueSky * YouTube Channel: Watch full podcast episodes * National Voices — discussion on NHS Online Trust plans * Volunteers Week (June) — opportunities to support IAUK 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/ [https://inflammatoryarthritis.org/]

Beyond Awareness Days

Awareness days come and go, but life with inflammatory arthritis shows up every single day, especially when your hospital appointments disappear into the system. In this episode, Debbie and Katy talk candidly about the reality of being “lost in the system”, from missed biologic reviews and last‑minute phone calls to the emotional and practical fallout when admin goes wrong. Alongside the realities of recovering from surgery, grief, family pressures and the mental load of chronic illness.They also explore the many awareness days and weeks in May, from Axial SpA to mental health, fibromyalgia, auto‑inflammatory conditions, and International Nurses Day and why awareness shouldn’t be limited to a calendar date. Life with IA is every day, and so is the need for understanding, compassion, and community.Key Topics * The reality of hospital admin and biologic funding renewals * Navigating unexpected appointment changes * Surgery recovery, anaesthetic effects, and medication timing * Grief, family responsibilities, and emotional load * Mental health and long‑term conditions * The importance of self‑compassion * Awareness days in May: what they mean and why they matter * Axial SpA, auto‑inflammatory conditions, fibromyalgia, and arthritis awareness * The role of nurses and consultants in IA care * Misdiagnosis and overlapping symptoms * Why awareness should extend beyond awareness days Keywords inflammatory arthritis, IAUK, biologics, rheumatology, Axial SpA, psoriatic arthritis, fibromyalgia, auto‑inflammatory disease, mental health, chronic illness, grief and illness, patient experience, arthritis awareness month, nurses day, long‑term conditions, self‑compassion, lived experience, inflammatory podcast Awareness Days & Weeks Mentioned * Mental Health Awareness Week * Axial Spondyloarthritis Awareness Day — 2 May * Fibromyalgia Awareness Day — 12 May * International Nurses Day — 12 May * Auto‑Inflammatory Awareness Day — 20 May * Arthritis Awareness Month (US) Mental health support: If you are struggling or need help with your mental health,below is where you can find support: Suicidal thoughts can be distressing, you can find help here [https://www.rethink.org/advice-and-information/about-mental-illness/mental-health-symptoms/suicidal-thoughts-how-to-cope/]:  ·       Samaritans https://www.samaritans.org/ [https://www.samaritans.org/] 116 123 always open ·       Mind https://www.mind.org.uk/ [https://www.mind.org.uk/] 0300 102 1234 Open 9am to 6pm weekdays ·       Shout  https://giveusashout.org/ [https://giveusashout.org/]  Text Shout to 85258 open 24/7 Episodes referenced: Episode 5 You are not alone : Mental health discussion [https://inflammatoryarthritis.org/episode-1-copy-copy-copy/] Interviews with Rachell Smith [https://inflammatoryarthritis.org/episode-17/], Adam Newton [https://inflammatoryarthritis.org/episode-22/], James Hollens [https://inflammatoryarthritis.org/episode-38/]and Charlie Robards [https://inflammatoryarthritis.org/episode-51/] Episode 56 with Dr Rosemary Hollick [https://inflammatoryarthritis.org/episode-56/] Episode 52 with Andy Kelly [https://inflammatoryarthritis.org/episode-52/] good practice of mental health services Connect with us: We love hearing from you — your stories, your experiences, your questions.Follow, like, share and comment to help us reach more people living with inflammatory arthritis. * Instagram * Facebook * LinkedIn * Bluesky * Newsletter: sign up at inflammatoryarthritis.org If you'd like to share your lived experience, email us at info@inflammatoryarthritis.org. 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/ [https://inflammatoryarthritis.org/]

Inflammatory Arthritis Insights with Dr Rosemary Hollick

In this insightful conversation, Debbie and Katy sit down with Dr Rosemary Hollick, a rheumatologist, researcher, and champion of patient‑centred care, to explore the realities of psoriatic arthritis, axial spondyloarthritis, and the evolving landscape of treatment. Rosemary explains how symptoms present, why diagnosis can be so challenging (especially for women), and how biologics have transformed outcomes over the past two decades. The episode also dives into Rosemary’s award‑winning work in health services research and the vital role of Patient and Public Involvement and Engagement (PPIE). She shares how involving patients from the very beginning of research leads to better questions, better care, and better impact. As she says in the transcript, “Just listen to the patient because the patient will tell you the answer.” This is a warm, honest, and empowering discussion for anyone living with inflammatory arthritis or supporting someone who is. Key words: Psoriatic arthritis, Axial spondyloarthritis, Inflammatory arthritis, Rheumatology, Diagnosis delay, Inflammatory back pain, Biologics, Patient‑centred care, PPIE, Health services research, Vasculitis, Uveitis,Spondyloarthropathies, Shared decision‑making Topics covered: * Rosemary’s journey into rheumatology and research * What psoriatic arthritis is and how it presents * Differences between psoriatic arthritis and rheumatoid arthritis * How axial spondyloarthritis is diagnosed * Why women are often missed or misdiagnosed * The difference between inflammatory and mechanical back pain * How treatment has changed from 2008 to 2026 * The shift from inpatient wards to fast‑track outpatient care * Early use of biologics and why it matters * The challenge of trial‑and‑error treatment * Shared decision‑making and tailoring biologics to lifestyle * What meaningful PPIE looks like in practice * How patient partners shape research questions, analysis, and impact * The importance of trust, respect, and long‑term relationships in research * The “you said, we did” approach to accountability IAUK resources: * IAUK website: inflammatoryarthritis.org * IAUK newsletter sign‑up * IAUK social channels: Facebook, Instagram, LinkedIn, BlueSky This episode was funded by UCB how 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 replaceprofessional 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. ·       Formore information, head to https://inflammatoryarthritis.org/ [https://inflammatoryarthritis.org/]

British Society for Rheumatology 2026

Debbie and Katy return exhausted but energised after three intense days at the British Society for Rheumatology Conference in Glasgow,marking Inflammatory Arthritis UK’s first-ever national conference appearance.In this episode, they unpack what it meant to show up as a young charity, the powerful conversations they had with clinicians, researchers, and other charities, and the surprising innovations they discovered, from robotic ultrasounds to smarter blood monitoring systems. This is an honest, behind‑the‑scenes look at what happens when lived experience meets the wider rheumatology community and how much appetite there is for patient voice, collaboration, and change. “This gives us insights into what happens outside that clinic door and beyond the self‑management side.” Key Topics * Our first national conference as a charity * Meeting the wider rheumatology community * Why clinicians are listening to the podcast * The challenge of medication names * The transition gap for young people (16–18) * Admin frustrations & homecare inequalities * New technologies on the horizon * Research culture is changing * PPIE (Public & Patient Involvement and Engagement) Useful Resources & Links * Inflammatory Arthritis UK – sign up for the newsletter: inflammatoryarthritis.org * Follow IAUK on Facebook, LinkedIn, Instagram, and BlueSky * Previous episode on NHS admin challenges (referenced by clinicians at the conference) * Upcoming guest: Dr Rosemary Hollick on research, psoriatic arthritis, and axial spondyloarthritis 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/ [https://inflammatoryarthritis.org/]

Getting Lost in NHS admin

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 info@inflammatoryarthritis.orgor 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/ [https://inflammatoryarthritis.org/]