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Hello and Welcome to PsA HQ Podcasts -  I’m Mel Brooke, and I am hosting a podcast mini-series called “Voices Making a Difference”, highlighting people who have used their musculoskeletal or chronic condition experiences to drive positive change  - whether through advocacy, research, writing, or community support.  In this episode, I’m joined by Simon Stones, a long-standing patient partner, advocate and friend, to explore his journey from living with a chronic condition to influencing healthcare, research and patient engagement. Simon shares insights from his work as a patient partner and his experiences of working alongside researchers, healthcare professionals and organisations to ensure that the voices of people living with health conditions are heard and valued. We reflect on the importance of lived experience, the evolving role of patient partners, and how meaningful collaboration can help make a difference to research and healthcare. Please tune in again, follow this channel and help celebrate Simon and all the other amazing people in this series – all making a difference to people with MSK.    Lived experience doesn’t just tell a story - it can drive real change.   Simon’s Instagram: @simonrstones  If you would like to share your experience or think of someone who would be a great fit for this series please get in touch.   My website and contacts can be found via ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠one of my links ⁠⁠here⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ and I would love it if you follow me on your listening platform for news of more episodes!    Disclaimer This episode reflects personal experiences, opinions and discussion. It is not intended as medical advice. Always speak to a healthcare professional for individual guidance.   *Music by ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Alex Morgan from ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Pixabay⁠⁠⁠⁠*

Hello and Welcome to PsA HQ Podcasts -  I’m Mel Brooke, and I am hosting a podcast mini-series called “Voices Making a Difference”, highlighting people who have used their musculoskeletal or chronic condition experiences to drive positive change  - whether through advocacy, research, writing, or community support.  In this episode, I’m joined by Ailsa Bosworth, MBE and founder of National Rheumatoid Arthritis Society (NRAS). We talk about her experience of severe rheumatoid arthritis and fighting to access treatment, to starting an organisation from a blank sheet of paper and discovering the power of peer support. We also discuss what has changed in patient advocacy over the past 25 years, what still hasn't changed, and the people patient organisations may still struggle to reach. Please tune in again, follow this channel and help celebrate Ailsa and all the other amazing people in this series – all making a difference to people with MSK.  Lived experience doesn’t just tell a story - it can drive real change.   Link: Website:  https://creators.spotify.com/nras.org.uk      If you would like to share your experience or think of someone who would be a great fit for this series please get in touch. My website and contacts can be found via ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠one of my links ⁠⁠here⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ and I would love it if you follow me on your listening platform for news of more episodes!    Disclaimer This episode reflects personal experiences, opinions and discussion. It is not intended as medical advice. Always speak to a healthcare professional for individual guidance.   *Music by ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Alex Morgan from ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Pixabay⁠⁠⁠⁠*

Hello and Welcome to PsA HQ Podcasts -  I’m Mel Brooke, and I am hosting a podcast mini-series called “Voices Making a Difference”, highlighting people who have used their musculoskeletal or chronic condition experiences to drive positive change  - whether through advocacy, research, writing, or community support.  In this episode, I’m joined by Dr Catherine O’Leary, a Clinical Psychologist and author living with Psoriasis. We talk about what it’s like to grow up with Psoriasis, deal with the emotional and psychological impacts and stigmas. We also talk about coping strategies, her motivation for writing the book 'Coping with Psoriasis' and why she felt raising awareness of the invisible burdens of Psoriasis is so important. Please tune in again, follow this channel and help celebrate Catherine and all the other amazing people in this series – all making a difference to people with MSK.  Lived experience doesn’t just tell a story - it can drive real change. Links: Website:   https://copingwithpsoriasis.com Instagram:  https://www.instagram.com/drcatherineoleary/ You Tube:  https://www.youtube.com/@catherineoleary3517  If you would like to share your experience or think of someone who would be a great fit for this series please get in touch.  My website and contacts can be found via ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠one of my links ⁠here⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ and I would love it if you follow me on your listening platform for news of more episodes!    Disclaimer This episode reflects personal experiences, opinions and discussion. It is not intended as medical advice. Always speak to a healthcare professional for individual guidance.   *Music by ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Alex Morgan from ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Pixabay⁠⁠⁠⁠*

Hello and Welcome to PsA HQ Podcasts -  I’m Mel Brooke, and I am hosting a podcast mini-series called “Voices Making a Difference”, highlighting people who have used their musculoskeletal or chronic condition experiences to drive positive change  - whether through advocacy, research, writing, or community support.   In this episode, I’m joined by David Chandler of  The Psoriasis and Psoriatic Arthritis Alliance   (PAPAA for short ). Many people will have heard of PAPAA, fewer will know the personal story behind how it began. As we chat, David reflects on living with psoriasis and psoriatic arthritis, the frustration of finding almost no information after diagnosis, and how a simple search for answers along with his wife Julie unexpectedly grew into a national patient organisation that has helped thousands of people over three decades!   Please tune in again, follow this channel and help celebrate David and all the other amazing people in this series – all making a difference to people with MSK.    Lived experience doesn’t just tell a story - it can drive real change. PAPAA can be found here: ⁠ ⁠ https://www.papaa.org    If you would like to share your experience or think of someone who would be a great fit for this series please get in touch.  My website and contacts can be found via ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠one of my links ⁠here⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ and I would love it if you follow me on your listening platform for news of more episodes!    Disclaimer This episode reflects personal experiences, opinions and discussion. It is not intended as medical advice. Always speak to a healthcare professional for individual guidance.   *Music by ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Yevhen Onoychenko⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ from ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Pixabay⁠⁠⁠⁠*

Hello and Welcome to PsA HQ Podcasts -  I’m Mel Brooke, and I am hosting a podcast mini-series called “Voices Making a Difference”, highlighting people who have used their musculoskeletal or chronic condition experiences to drive positive change  - whether through advocacy, research, writing, or community support. In this episode, I’m joined by Debbie Wilson and Katy Pieris from Inflammatory Arthritis UK. They talk about their motivation to set up the charity and together, we talk about life with inflammatory arthritis, the importance of peer support, community, and the power of honest conversations like their podcasts and this discussion that hopefully will help people feel seen and less alone. Please tune in again, follow this channel and help celebrate Debbie, Katy and the others people in this series – all making a difference in MSK.    Lived experience doesn’t just tell a story - it can drive real change.     Inflammatory Arthritis UK can be found here: ⁠ https://inflammatoryarthritis.org Inflammatory! Podcasts:  https://inflammatoryarthritis.org/podcast-2/ And on Instagram they are @inflamarthritis    If you would like to share your experience or think of someone who would be a great fit for this series please get in touch.  My website and contacts can be found via ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠one of my links here ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ and I would love it if you follow me on your listening platform for news of more episodes!    Disclaimer This episode reflects personal experiences and discussion. It is not intended as medical advice. Always speak to a healthcare professional for individual guidance.   *Music by ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Yevhen Onoychenko⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ from ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Pixabay⁠⁠⁠⁠*

Hello and Welcome to PsA HQ Podcasts -  I’m Mel Brooke, and I am hosting a podcast mini-series called “Voices Making a Difference”, highlighting people who have used their musculoskeletal or chronic condition experiences to drive positive change  - whether through advocacy, research, writing, or community support. In this conversation, I sit down with Rebecca Beesley from The JAR Project, sharing a powerful and honest story of living with arthritis, parenting through it, and finding a voice in advocacy. This is a gentle, real conversation about challenges, resilience, and what it means to turn personal experience into something that helps others. Please tune in again, follow this channel and help celebrate Rebecca and more people in this series – all making a difference in MSK.  Lived experience doesn’t just tell a story - it can drive real change. The JAR Project can be found here: https://www.jarproject.org And on Instagram they are @_jarproject    If you would like to share your experience or think of someone who would be a great fit for this series please get in touch.  My website and contacts can be found via ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠one of my links here ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ and I would love it if you follow me on your listening platform for news of more episodes!  Disclaimer This episode reflects personal experiences and discussion. It is not intended as medical advice. Always speak to a healthcare professional for individual guidance. *Music by ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Yevhen Onoychenko⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ from ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Pixabay⁠⁠⁠⁠*

Hello and Welcome to PsA HQ Podcasts -  I’m Mel Brooke, and this year I am hosting a new podcast mini-series called “Voices Making a Difference”, highlighting people who have used their musculoskeletal or chronic condition experiences to drive positive change  - whether through advocacy, research, writing, or community support. In this episode, I speak to Gillian Best, author of "Chronic: Understanding Pain," we discuss her background and motivation for writing the book. She shares her experience living with multiple autoimmune conditions, including ankylosing spondylitis and Crohn's disease and how she wanted to find an answer to why Chronic pain is so poorly understood and hard to treat.  Gillian explains how the book began, shares how she reached out to researchers to help get an answer -   and why writing it has been part of a personal quest to find a cure for her conditions.  Please tune in, follow and help celebrate Gill and more people in this series – all making a difference in MSK. Through relaxed, meaningful conversations, each episode explores personal journeys, the motivation behind their work, and the impact they’re making. Because lived experience doesn’t just tell a story - it can drive real change.   Gills book can be found online via Amazon and in many high street book shops.  Also mentioned in the podcast was Gills instagram: @gillianebest   If you would like to share your experience or think of someone who would be a great fit for this series please get in touch. My website and contacts can be found via ⁠⁠⁠⁠⁠⁠⁠⁠⁠one of my links here ⁠⁠⁠⁠⁠⁠⁠⁠⁠ and I would love it if you follow me on your listening platform for news of more episodes! Music by ⁠⁠⁠⁠⁠⁠⁠⁠⁠Yevhen Onoychenko⁠⁠⁠⁠⁠⁠⁠⁠⁠ from ⁠⁠⁠⁠⁠⁠⁠⁠⁠Pixabay⁠⁠⁠ This podcast shares real conversations and insights to support people living with inflammatory arthritis and related conditions. It aims to amplify patient voices, improve understanding, and make information more accessible.   DisclaimerThis episode reflects personal experiences and discussion. It is not intended as medical advice. Always speak to a healthcare professional for individual guidance.

Hello and a warm welcome back to PsA HQ. I’m Mel Brooke, and I’ve been supporting people with rheumatic conditions since 2011. In this short episode, I’m introducing our new season theme, Voices Making a Difference, and sharing what’s coming next following the Research Bridging Series in 2025. If you would like to nominate someone for the new series or share your experience please get in touch - send an email me at ⁠⁠⁠⁠⁠psazzgroup (at) gmail.com⁠⁠⁠⁠⁠ My website and contacts can be found via ⁠⁠⁠⁠⁠⁠⁠⁠one of my links here ⁠⁠⁠⁠⁠⁠⁠⁠ and I would love it if you follow me on your listening platform for news of more episodes! This podcast channel shares real conversations and insights to support people living with inflammatory arthritis and related conditions. It aims to amplify patient voices, improve understanding, and make information more accessible. DisclaimerThe PsA HQ podcast episodes reflect personal experiences and discussion. It is not intended as medical advice. Always speak to a healthcare professional for individual guidance. Music by ⁠⁠⁠⁠⁠⁠⁠⁠Yevhen Onoychenko⁠⁠⁠⁠⁠⁠⁠⁠ from ⁠⁠⁠⁠⁠⁠⁠⁠Pixabay⁠⁠⁠

Welcome back to PsA HQ! I’m Mel Brooke and I am currently on a mission to break down the barriers that can put people off getting involved in rheumatology research! In this super short podcast episode I’m sharing another ⁠PsA HQ blog⁠ post with results from the UK Rheumatology Patient Research Partner survey, this time as an audio video production featuring another 'ai friend'. I hope you are enjoying these creative approaches to information sharing :-) My website and contacts can be found via ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠one of my links here ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ and I would love it if you follow me on your listening platform for news of more episodes! If you would like to share your experience of research involvement from a patient or researcher perspective, or share a research opportunity or news please get in touch - send an email me at ⁠⁠⁠⁠⁠⁠⁠psazzgroup (at) gmail.com⁠⁠⁠⁠⁠⁠⁠ Music by ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Yevhen Onoychenko⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ from ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Pixabay⁠⁠⁠

Welcome back to PsA HQ! I’m Mel Brooke and I am currently on a mission to break down the barriers that can put people off getting involved in rheumatology research! In this episode I’m sharing an audio version of a PsA HQ blog post with results from the UK Rheumatology Patient Research Partner survey as a discussion between our ai friends - starting with this post that looked at 'Who Gets Involved in Research—and Who Gets Left Out?' My website and contacts can be found via ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠one of my links here ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ and I would love it if you follow me on your listening platform for news of more episodes! If you would like to share your experience of research involvement from a patient or researcher perspective, or share a research opportunity or news please get in touch - send an email me at ⁠⁠⁠⁠⁠⁠psazzgroup (at) gmail.com⁠⁠⁠⁠⁠⁠ Music by ⁠⁠⁠⁠⁠⁠⁠⁠⁠Yevhen Onoychenko⁠⁠⁠⁠⁠⁠⁠⁠⁠ from ⁠⁠⁠⁠⁠⁠⁠⁠⁠Pixabay⁠⁠⁠

Welcome back to PsA HQ! I’m Mel Brooke and I am currently on a mission to break down the barriers that can put people off getting involved in research! In this episode I’m joined by long time 'PsAZZer' and patient expert partner friend Jana James. Join us as we chat around some more of the insights and comments coming out of the PRP survey... Links mentioned in the podcast: NICE website James Lind Alliance Top 10 PsA Priority Setting Project Info on GRIPP2 Jana's earlier podcast on PsA HQ If you would like to share your experience of research involvement from a patient or researcher perspective, or share a research opportunity or news please get in touch - send an email me at ⁠⁠⁠⁠⁠psazzgroup (at) gmail.com⁠⁠⁠⁠⁠ My website and contacts can be found via ⁠⁠⁠⁠⁠⁠⁠⁠one of my links here ⁠⁠⁠⁠⁠⁠⁠⁠ and I would love it if you follow me on your listening platform for news of more episodes! Music by ⁠⁠⁠⁠⁠⁠⁠⁠Yevhen Onoychenko⁠⁠⁠⁠⁠⁠⁠⁠ from ⁠⁠⁠⁠⁠⁠⁠⁠Pixabay⁠⁠⁠

Welcome back to PsA HQ! I’m Mel Brooke and I am on a mission to break down the barriers that can put people off getting involved in research! In this episode I’m joined by patient expert partner and friend Russ Cowper. We catch up on his role with the Psoriasis Association and research projects he’s currently involved in. We discuss some of the insights coming out of the PRP survey and Russ shares a poem from a recent community based project in Manchester and a few of his funny research experiences with us so listen out for those!   Links mentioned in the podcast: Psoriasis Association https://www.psoriasis-association.org.uk Manchester ARC.    https://arc-gm.nihr.ac.uk Health Innovation Manchester https://healthinnovationmanchester.com Manchester Memories e-book: https://arc-gm.nihr.ac.uk/projects/understanding-experiences-GM-covid-vaccination-programme If you would like to share your experience of research involvement from a patient or researcher perspective, or share a research opportunity or news please get in touch - send an email me at ⁠⁠⁠⁠psazzgroup (at) gmail.com⁠⁠⁠⁠ My website and contacts can be found via ⁠⁠⁠⁠⁠⁠⁠one of my links here ⁠⁠⁠⁠⁠⁠⁠ and I would love it if you follow me on your listening platform for news of more episodes! Music by ⁠⁠⁠⁠⁠⁠⁠Yevhen Onoychenko⁠⁠⁠⁠⁠⁠⁠ from ⁠⁠⁠⁠⁠⁠⁠Pixabay⁠⁠⁠

Happy New Year and a Warm Welcome back to PsA HQ! I’m Mel Brooke and I am on a mission to support people with rheumatic diseases and break down the barriers that can put people off getting involved in rheumatology research! In this first episode of 2025 I want to give you a bit of an update from me mixed in with a bit of ai related fun ! Do have a listen in :-)   If you would like to share your experience of research involvement from a patient or researcher perspective, or share a research opportunity or news please get in touch - send an email me at ⁠⁠⁠⁠psazzgroup (at) gmail.com⁠⁠⁠⁠ My website and contacts can be found via ⁠⁠⁠⁠⁠⁠⁠one of my links here ⁠⁠⁠⁠⁠⁠⁠ and I would love it if you follow me on your listening platform for news of more episodes! Music by ⁠⁠⁠⁠⁠⁠⁠Yevhen Onoychenko⁠⁠⁠⁠⁠⁠⁠ from ⁠⁠⁠⁠⁠⁠⁠Pixabay⁠⁠⁠

Welcome back to PsA HQ! I’m Mel Brooke and I am on a mission to break down the barriers that can put people off getting involved in research! In this episode I talk to Clive McIntyre, a passionate volunteer and patient ambassador, to explore the transformative power of patient voices in research and healthcare. Clive shares his journey of living with rheumatoid arthritis and how it inspired him to advocate for better patient involvement in research and clinical practice. From discussing the challenges of ensuring diverse representation to the ripple effects of small contributions, Clive’s insights offer a compelling case for why every patient’s perspective matters.   If you would like to share your experience of research involvement from a patient or researcher perspective, or share a research opportunity or news please get in touch - send an email me at ⁠⁠⁠psazzgroup (at) gmail.com⁠⁠⁠ My website and contacts can be found via ⁠⁠⁠⁠⁠⁠one of my links here ⁠⁠⁠⁠⁠⁠ and I would love it if you follow me on your listening platform for news of more episodes! Music by ⁠⁠⁠⁠⁠⁠Yevhen Onoychenko⁠⁠⁠⁠⁠⁠ from ⁠⁠⁠⁠⁠⁠Pixabay⁠⁠⁠

Welcome back to PsA HQ where we explore important topics in health, research, patient involvement and advocacy! I’m Mel Brooke and in this episode we are diving into the HIPPOCRATES Prospective Observational Study (HPOS for short) with guest Prof. Oliver FitzGerald, University College Dublin.  Psoriatic arthritis is a potentially debilitating condition, and the HPOS study aims to identify the factors that put certain individuals at risk. This work is essential not only for improving diagnosis and treatment but also for exploring ways to prevent PsA from developing altogether. We also have a candid discussion about the challenges of recruiting participants across Europe, how innovative online methods are making the study more accessible, and what it means to have patients at the heart of this research.  Useful Links: PsA Hq website  HPOS News article HPOS Study Link We would also like to acknowledge the following members of the HPOS team: -University of Oxford: Laura Coates (Principle Investigator), David Kerr and Timeo Mtenga.    -University College Dublin: Stephen Pennington, Colette O'Donnell and Teresa Grohmann.   -HIPPOCRATES PRP Heidi Bertheussen - Natasha de Peyrecave (UCB and EFPIA lead) If you would like to share your research projects, news, experience or research involvement experiences please get in touch to enquire - simply send an email me at ⁠⁠⁠[email protected]⁠⁠⁠ My website and contacts can all be found via ⁠⁠⁠⁠⁠⁠one of my links here ⁠⁠⁠⁠⁠⁠ and I would love it if you follow me on your listening platform for news of more episodes! Music by ⁠⁠⁠⁠⁠⁠Yevhen Onoychenko⁠⁠⁠⁠⁠⁠ from ⁠⁠⁠⁠⁠⁠Pixabay⁠⁠⁠⁠