Debbie and Katy wrap up the season with a candid conversation about heatwaves, illness, parenting teenagers, joint injections, diet experiments, movement, NHS walking rewards, and summer plans. They reflect on the insightful conversations with recent guests Jamie and Mel, explore gut health and food diaries, discuss the realities of fluctuating conditions, and share personal stories from daily life. The episode closes with summer break plans and a teaser for Debbie’s upcoming O2 climb fundraiser.

Key Topics

• Managing heat, humidity, fatigue, and flare‑ups
• Teenagers, joint injections, and hospital chaos
• Reflections on Jamie’s and Mel’s episodes: diet, gut health, microbiome, vegan resets
• Food diaries, dietitian consultations, and personalised nutrition
• Balancing convenience eating, cost of takeaways, and planning meals
• NHS walking rewards scheme: accessibility, chronic illness considerations, tracking issues
• Movement beyond walking: cycling, swimming, spinning, baseline activity
• PE in schools, access to sports, private vs state school facilities
• Fibromyalgia vs inflammatory arthritis symptoms
• Summer holidays, travel plans, Wimbledon wand antics
• Charity updates, upcoming projects, and Debbie’s O2 climb fundraiser

Key Words: heatwave, fatigue, humidity, joint injection, squeamish, gut health, microbiome, dietitian, food diary, fibromyalgia, inflammatory arthritis, movement, baseline activity, NHS walking rewards, accessibility, spinning, PE, teenagers, summer holidays, fundraiser, O2 climb

Resources Mentioned

• Inflammatory! One percent episode

• Inflammatory Arthritis UK (IAUK) – website, blogs, social channels
• NHS Walking Rewards Scheme – upcoming initiative
• IAUK contact – [email protected]
• IAUK socials – Facebook, Instagram, LinkedIn, BlueSky
• YouTube – watch full podcast episodes

Key Quotes

“We try to control the uncontrollable, and one way to do that is by what we eat.”

“I absolutely hate heights. So, what’s the best thing to do? Go climb the O2.”

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/

Mel Brooke joins Debbie and Katy to share her decades‑long journey with psoriasis, psoriatic arthritis, and later fibromyalgia and how lived experience led her into clinical research and ultimately to co‑founding PRP-NeTT, the UK Rheumatology Patient Research Partner Network and think tank.She discusses fatigue in all its forms, lifestyle experimentation, the complexity of comorbidities, and why patient voices must shape research. Mel explains how PRP-NeTT emerged from a national survey revealing gaps in patient involvement, and how mentoring, orientation, and shared decision‑making can transform research culture.

Key topics:

• The impact of poor sleep and the different “types” of fatigue
• Early psoriasis, psoriatic arthritis diagnosis, and navigating denial
• Lifestyle interventions: Mediterranean diet, vegan reset, symptom diaries, trigger mapping
• Fibromyalgia as a comorbidity and the difficulty of distinguishing symptoms
• Shared decision‑making and safe experimentation (e.g., turmeric and blood‑thinning interactions)
• Mel’s transition from clinical research professional to patient research partner
• GRAPPA’s work on patient‑reported outcomes and recognising fatigue as a major burden
• The creation of PRP-Nett: survey findings, think‑tank model, mentoring, and improving patient involvement
• The importance of disseminating research results back to patients
• How people can get involved in research beyond clinical trials

Key words: psoriatic arthritis, psoriasis, fatigue crushes, sleep quality, fibromyalgia, neuroinflammation, lifestyle interventions, Mediterranean diet, trigger foods, symptom diary, shared decision‑making, patient research partner, GRAPPA, patient‑reported outcomes, PRP-NeTT, advocacy, peer support, rheumatology research, NIHR standards, mentoring, research involvement pathways

Resources mentioned:

• PRP-neTT (UK Rheumatology Patient Research Partner Network) Think tank, mentoring, and reflections on patient involvement https://prpnettt.substack.com/
• PsA HQ website 'Guide to becoming a PRP'   and ''Onboarding PRPs: A Simplified Guide for Research Teams” https://psazzgroup.wixsite.com/psa-hq
• GRAPPA: Group for Research and Assessment of Psoriasis and Psoriatic Arthritis International research body working on patient‑reported outcomes https://www.grappanetwork.org/
• GRAPPA research project Patient outcome measures  
• NIHR:UK standards for patient involvement in research https://www.nihr.ac.uk/
• Inflammatory Arthritis UK: Research page for involvement opportunities https://inflammatoryarthritis.org/research/

Connect with Mel: Instagram: @PSA_HQ

Connect with IAUK

• Website: inflammatoryarthritis.org
• Newsletter: Sign up for updates and new episodes
• Social: Facebook, Instagram, BlueSky, LinkedIn
• YouTube: Watch full episodes, subscribe, and share

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/

Jamie Boder joins Debbie and Katy for a powerful, honest conversation about being diagnosed with Axial Spondyloarthritis (AxSpA) at 18, navigating Crohn’s disease, and learning to care for his whole self through movement, yoga, and mind–body practices. Jamie shares the emotional impact of diagnosis, the challenges of early adulthood with chronic illness, and the tools that helped him reclaim agency, stability, and joy.Key topics:

• Early autoimmune symptoms and delayed diagnosis
• Emotional impact of AxSpA at 18
• Losing identity and social connection through reduced mobility
• Dual diagnosis: AxSpA + Crohn’s disease
• Treatment limitations (NSAIDs, biologics, care coordination)
• Microbiome testing and the risks of extreme dietary control
• Yoga, somatic practices, interoception, and fatigue management
• Vagus nerve research and nervous system regulation
• Sustainable lifestyle changes vs. “cure culture”
• Jamie’s recent flare and reassessing medication
• Building Yoga for AS and supporting the community

Key words: Axial Spondyloarthritis, AxSpA, Ankylosing Spondylitis, Crohn’s Disease, Inflammatory Arthritis, Yoga for AS, Jamie Boder, microbiome, vagus nerve, fatigue management, yoga nidra, somatic practices, autoimmune health, remission, inflammatory bowel disease, IBD, chronic illness support, nervous system regulation.

Resources mentioned:

• The Great Nerve, book exploring vagus nerve and inflammation
• Yoga Nidra (guided deep relaxation for fatigue)
• Yoga for Arthritis (training organisation)
• Yoga for AS, Jamie’s organisation supporting AxSpA-friendly movement

Connect with Jamie:

Instagram: @YogaForAS

Connect with IAUK

Newsletter: Sign up for updates and new episodes

Social: Facebook, Instagram, BlueSky, LinkedIn

YouTube: Watch full episodes, subscribe, and share

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’s episode brings back a long‑overdue Q&A, complete with a side of chaos. Between sick kids, COVID flashbacks, swollen joints, medication hangovers and the emotional weight of parenting with IA, we still show up with the Inflammatory! honesty and humour you expect.

Topics covered:

• Parenting while managing IA; the guilt, the logistics, the emotional load
• COVID memories, shielding, and how our instincts changed
• Debbie’s daughter’s JIA flare and the heartbreak of stepping back as a parent
• Medication hangovers: how we handled them then vs now
• Tips for remembering injections (and why snoozing reminders is dangerous)
• Weird symptoms no one warned us about
• Fatigue, pacing, and the myth of the “realistic day” with IA
• How to avoid falling through NHS cracks
• Honest conversations with family and why we often don’t have them
• “The world would be better if…”
• The dangers of misinformation and preachy “cure” culture online
• Charlie Robards’ Hitting AS for Six and why it’s worth reading

Key messages

• IA affects everyone differently, comparison helps no one
• Fatigue is under‑discussed and overwhelming
• Organisation helps, but the system is still complex
• Kindness, respect, and active listening make the world better

Key words: Inflammatory arthritis, IA flares, JIA, arthritis fatigue, medication side effects, biologic injections, NHS rheumatology, chronic illness management, pacing, brain fog, and steroid joint injections.Resources:

Purchase Charlie Robards Hitting AS for Six (all profits go to NASS)

Sign up to our newsletter at inflammatoryarthritis.org

Follow Inflammatory Arthritis UK on Facebook, Instagram,Bluesky and 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/

In this warm, funny, and deeply relatable episode, Debbie and Katy dive into the messy reality of living with inflammatory arthritis; from chaotic travel days and brain fog to shooting elbow pain, perimenopause confusion, and the blurred lines between inflammatory arthritis and fibromyalgia. They explore new research finally proving what patients have said for years: weather really does affect pain. They also chat about art therapy, inclusive social activities, bowling with dodgy wrists, and the joy (and chaos) of corporate team‑building games. It’s an episode full of honesty, humour, and the kind of lived experience you only get from people navigating this condition every day.

Key words: inflammatory arthritis, brain fog, fibromyalgia, perimenopause, weather and pain, humidity, low atmospheric pressure, patient experience, DMARDs, medication hangover, art therapy, NEIAA audit, remission, chronic illness, lived experience, arthritis research

Topics covered:

• Travel chaos & chronic illness
• Brain fog; what is it really?
• Fibromyalgia vs inflammatory arthritis
• Weather & pain; new research
• What do we do with this information?
• NEIAA audit & the importance of language
• Clinical vs medicated remission
• Art therapy & creative escapes
• Inclusive social activities
• Community, local charities & support

Resources and mentions:

• NEIAA – National Early Inflammatory Arthritis Audit (Discussion on terminology and patient engagement)
• Weather–pain research using smartphone tracking (13,000 participants)
• Fibromyalgia charities – upcoming guest planned
• Local community charities offering art therapy and support services
• Inflammatory Arthritis UK – newsletter & social channels

Connect with usStay up to date with new episodes, resources, and community updates:

• Website & Newsletter: inflammatoryarthritis.org

• Social: Facebook, Instagram, LinkedIn, BlueSky
• YouTube: Watch full episodes
• TikTok: Coming soon!

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 lively catch‑up episode, Debbie and Katy reflect on a chaotic two weeks filled with heatwaves, family events, joint flares, and a whirlwind visit to the EULAR Congress in London. From coping with extreme weather to navigating grief, pacing, and swollen joints, the conversation moves into deeper reflections on patient involvement in research, global collaboration, and the importance of honest conversations in rheumatology clinics. Debbie shares insights from EULAR, including discussions on youth engagement, sex and relationships in chronic illness, and the need for better data—especially for children and young people. The episode closes with excitement about future guests, growing global reach, and the upcoming 60th episode milestone.Key wordsInflammatory arthritis, EULAR, rheumatology, patient involvement, JIA, diagnosis delays, heatwave, pacing, chronic illness, research collaboration, NEIAA, patient voice, global community, sex and relationships in rheumatology, youth engagement.Key topics:

• Life in a heatwave: coping strategies, sunburn mishaps, heat exhaustion, and how weather impacts joints.
• Personal updates: family events, grief, operations, and the emotional load of busy weeks.
• EULAR Congress 2026:

• The scale of the event and navigating the Excel Centre
• “United in Motion” theme and reflections on movement
• Fishbowl discussions on youth involvement in research
• Conversations about sex, relationships, and medication impacts
• Global perspectives on trust, culture, and communication
• The power of patient stories alongside clinical information
• The role of social media in connecting patients, researchers, and clinicians.
• Charity collaboration: reflections from the PARE roundtable on diagnosis delays, impact, and the realities of limited time and resources.
• The NEIAA audit: why young people must be included and how missing data limits change.
• Pacing, burnout, and boundaries when you’re a volunteer or self‑employed.
• Growing global recognition of the podcast and IAUK’s work.
• Upcoming guests and the road to episode 60

Resources and mentions:

• EULAR – European Alliance of Associations for Rheumatology
• PARE – People with Arthritis and Rheumatism in Europe
• NEIAA – National Early Inflammatory Arthritis Audit
• NASS – National Axial Spondyloarthritis Society
• JIA Champions Programme
• Podultery Podcast (episode featuring Debbie & Katy now live)

Stay connected:

• Instagram & LinkedIn: @inflammatoryarthritisuk
• Podcast: Inflammatory! on all major platforms

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 medicallytrained. 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/

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/

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: 

·       Samaritans https://www.samaritans.org/ 116 123 always open

·       Mind https://www.mind.org.uk/ 0300 102 1234 Open 9am to 6pm weekdays

·       Shout  https://giveusashout.org/  Text Shout to 85258 open 24/7

Episodes referenced:

Episode 5 You are not alone : Mental health discussion

Interviews with Rachell Smith, Adam Newton, James Hollens and Charlie Robards

Episode 56 with Dr Rosemary Hollick

Episode 52 with Andy Kelly 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 [email protected].

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 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/

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/