Episode 55 British Society for Rheumatology 2026

Intro: A new milestone for our charity, speaking about our first national conference. Inflammatory! with Debbie Wilson and Katy Pieris, navigating life with inflammatory arthritis.

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: Katy

Debbie: I am so tired. Katy how you today?

Katy: I know. pretty tired as well. It’s been a very good three days though, hasn’t it?

Debbie: It has, we have been at the British Society for Rheumatology Conference in Glasgow all week. So, I got there Monday and you got there Tuesday. And it’s been our first national conference as a charity, which is fantastic, but just very tiring. But what were your thoughts?

Katy: Tuesday. Yeah, that’s brilliant. I mean, I’ve never been before and I know you have. I didn’t really have any expectations, and I wanted to be careful because I’ve gone to lots of conferences and exhibitions through work. Obviously, it’s a different industry. So, I wasn’t really sure what to expect, how busy it would be, how big it would be. And I think there was really good quality of people there and the conversations that we had at our stand, I think we were really lucky that we had really good quality conversations. Also, it helps that you’re pretty famous Debbie, aren’t you?

Debbie: I thought you might bring that up. Yes, because I suppose I spent my last, probably over six years really involved in that rheumatology world that yes, quite a lot of people know me through different things that I’ve been as research partners, running co-production workshops as well. So yes, I have been involved in many different things across the world of rheumatology. yes, people, it was so nice to see people that haven’t seen in ages and also in person as well.

Katy: Yes. And there’s some people that you, we worked at, you’d only met sort of digitally. So actually then seeing people in real life, there’s people that we’ve connected with on Instagram as well, more recently, that it was really lovely to meet them in person. But then also it wasn’t just about meeting people that we already know, was also meeting new contacts, new consultants. We met dentists, nurses, so people across physios, people across the whole care team essentially.

Debbie: Yeah, completely. And it was just, yeah, it was really nice to see people that hadn’t really also heard of the charity very much, because obviously we are still new. We’re not even 18 months old. And it’s probably not surprising some people hadn’t really heard of us.

Katy: Yes. And especially like rheumatologists, because really our focus has been really on reaching out to people like us, patients with these conditions.

Debbie: Yes, yeah. And so now, you know, they’re now aware of us and they can signpost their patients to us. But it’s also that they can go and listen to our podcast as well, because it is for everyone. And it will give them, because we did a talk and it was, there was loads of people there. It really, it was great. And then afterwards they came back and it’s like, this is great, because this gives us insights into what happens outside that clinic door and beyond the self-management side.

Katy: Yep. Yeah.

Debbie: It is those day-to-day realities of it all. And that’s exactly what we’re trying to do. So, our messaging is getting across, which is fantastic.

Katy: Yeah. And after the talk that kind of people came over to talk to us and people want us to go in, whether it’s digitally or in person, are quite keen for us to talk to their teams so that they can understand what there is out there to signpost their patients to. So, we’re really looking forward to our listener numbers growing even more, aren’t we?

Debbie: Yes, I’m going to look at the analytics of it all, it’s just, yes, it’s been, it has been really good because again, a bit like you, wasn’t quite sure on the expectations of it all because there is a huge European conference in London this year. So obviously people might be going to that instead of going up to Glasgow, because it’s a bit of a trek for most people to go to Glasgow, but the weather was beautiful. It was great. And actually, as you said, it was those quality conversations that we had and trying to talk to other companies that were out there as well, because there was a variety. Wasn’t just, you know, the pharmaceutical companies which had their medication names, which I can never pronounce in any way. They’re ridiculous. Yeah, we need to get into…

Katy: Yeah. Yeah. Yes, neither can I. But what’s your great idea that you were telling me about yesterday?

Debbie: Well, I think the way Australians name things is just brilliant. You know, they call their bottle shops, bottle shops. That’s fantastic. So why wouldn’t you just call medications the things that actually what they do to your body, you know, they target your immune system to stop you hurting. Well, can I have that medication, please? But you know, it’s just also because then when you go as a patient and you go and if you then see a different rheumatologist or a different consultant or different nurse and they ask you also what medication you want. It is so hard to go. I can’t, I don’t know. I don’t know what it’s called. I can’t pronounce it. So it’s them.

Katy: Yeah and I have to Google every single time that I go and see whether it, cause it’s also when you’re going to see like your dentist, you have to give your medical history. And even when I last went to the opticians, had to make sure they’re up to date with the medications I’m on. And when you can’t pronounce them or say them or spell them, it’s really, really tricky.

Debbie: Of course, yeah. Yes, it is very, very tricky. And also then for children as well, when they move into like adolescence and young adult care.

Katy: Yeah. And that was a big thing that you were talking about on the stand with people, wasn’t it? That sort of gap between sort of 16 to 18 and where people go.

Debbie: Yeah because I think what any condition you have, 16, 17s and that sort of age group, there is so much going on in their lives that, but you’re not really seen anywhere in the NHS because you’re not, you don’t really generally go to peadiatric because for them you’re kind of adult, but then you’re not an adult. So, you don’t go to adult care. And there are some amazing adolescents clinics around the country, but we need to get a lot more going.

Katy: Yeah.

Debbie: So yeah, so that’s something that we want to work with services because otherwise people drop off and we can’t allow them to be dropped off and not seen because for JIA, some of them can be a lifelong condition, you know, I’m one of them. And actually we need to be seen, we don’t drop off because then it’s also harder to get back into the system as well.

Katy: Yes. And there was a lot of, quite a few people had listened to last week’s episode as well about all the admin issues. So, I think, people are already listening, of healthcare professionals, some had already listened to some of our episodes, which was, I think, really, really positive.

Debbie: Yeah, it really was. Yeah, we go for dog walks with some people. It’s just great. And also, you know, they were then saying they get it, you know, as we said in the episode, they’re as frustrated with the admin side as much as we are as well. And it’s just trying to work out, great, how can we work together, you know, with that as well? And that’s something that the charity will be taking on because this is what we are trying to do is to help the lives of people living with IA. And that does mean helping the services as well that we will go and see.

Katy: Yeah, yeah, and influencing the future of some of those services as much as we can as a small charity.

Debbie: but then we can hopefully, if there’s major things going on, we can collaborate with other charities. And that’s what also was.

Katy: Yes, and that’s what was brilliant. And I don’t think I’d kind of really, like, I know the bigger charities in this space, but it was really lovely to meet a lot of the other charities in other sort of disease, specific disease areas, and also conditions that aren’t technically under the umbrella of inflammatory arthritis, but are quite often people will have them alongside inflammatory arthritis. So I, you know, it was really lovely. It’s such a lovely community. So, I’m used to going to conferences, trying to sell things and you don’t get the best reception. So, people actually wanted to talk to me, which was wonderful and not something I’m used to. I’m used to being hit with like brick walls and like having to try and get around people just being negative about you. So it was really nice that people actually want to talk to you.

Debbie: wow! Yes, the rheumatology world you, well, we’re all there for the same reason. You know, we want to help people living with these lives. And yeah, and that’s what it comes out. We have that common thing between us all and actually, you know, and we’re, we’re trying to do what we can as a very young, small charity, but it was, it was, it was really useful. And also there was other companies, not just pharmaceuticals there were some private sort of companies as well. And you actually had an ultrasound. Yeah.

Katy: I did. Yeah. So there was this robotic ultrasound, which is a really great concept. what it’s trying to do. there’s guess, USP is that when people are going through a diagnosis, quite often there’s multiple tests that you have to have dependent on, you know, very dependent on the disease. If you’ve gone to see a rheumatologist and then they suspect you’ve got a form of inflammatory arthritis, quite often you’re then sent for, I was sent for x-rays, but I think ultrasounds are better in terms of imaging. So, the idea is that this is like a patient self-service ultrasound. So instead of going to see a rheumatologist then being referred to get an ultrasound, you can go and use this machine within the clinic yourself. So, you’re given like an ID card, which will then have all the details of which joints need to be looked at. And then basically the robot tells you exactly what to do. And then you put the sort of gel. So, I ultrasound some of my fingers and you put the gel where it tells you to. So, it’s got a screen that kind of talks you through it. It talks to you. You place the gel on, then I placed my hand onto the surface and then the robot arm came down and then essentially a bit like a hand kind of it massaged each area that it was trying to get an image of. Look on YouTube so you can see what I’m doing. I did question, I did want to question kind of if you were flaring, but I guess it all should sound regardless, whether it’s done by a human or by a robot. If you’re flaring it might be quite uncomfortable.

Debbie: Yeah, because then I suppose if it’s human, can say, can you be a little bit more gentle?

Katy: Yeah, so that was my side as a patient. I was a little bit, if I was not in a good place, I’m not sure in hindsight kind of how I would feel about it, but I think the concept is really, really good. And I think if they allowed people to maybe think about when they had it. Because you haven’t got the control. You can’t tell it, ow, that hurts, take a bit of pressure off. So I think if you are a consultant and someone’s tried to sell you one of these machines, this is something to think about is actually that patients are quite delicate. And if there is an issue in a joint, then that’s where the human element, I think, could be quite nice. But it might be that if you are in severe pain, you are then referred to a human ultrasound clinic, but if you’re okay, then this could work quite well.

Debbie: Mmm. Yeah, that’s a really good point actually. I hadn’t thought of that. conversation, but no, yeah.

Katy: But I think it’s really interesting and just knowing that these things are potentially coming. There are a couple of hospitals that they mentioned that they’re already going to be implementing this service in over the next sort of six to 12 months. But no, I found it fascinating and there was a technology company there that helps hospitals with their blood monitoring service. So instead of people having to like manually to go through the blood monitoring, their technology does that for them and then flags who needs to be seen. But also, what it can do is over time, understand the fact that this person, these bloods might be normal levels for them. So, it’s not actually a concern. So, it kind of can be a little bit more personalized, which I guess would be, but that’s needs a human element to put that in in the first place. So really interesting. And I had some great conversations with some of the home care delivery organisations. And actually, and I’ve started to kind of recognise this sometimes it’s not actually their fault that there’s issues because they actually did a really great thing for me and they looked up my hospital and they said actually some of the services that they offer to hospitals that then help speed things up. My hospital doesn’t have the technology in place to enable them to plug in their technology. So like we were talking about last week, every service is so different. So sometimes there are these solutions out there, but if your hospital doesn’t have the infrastructure in place already, then they’re useless, essentially.

Debbie: Yeah. And I think, I think it’s tough, but as you say, but I think, but now they’ve realized that they did, these problems exist. How can we get the solutions to them? And I think, I just think it’s, it’s fascinating because obviously when I was diagnosed and just told to get on with it, I never thought that there was as much research and even whether it’s, the more research side into treatments, but also research into these new technologies.

Katy: Yes. Yeah. Yeah.

Debbie: these new things that can help patients. I didn’t know that any of this was going on behind the scenes. I suppose most patients don’t, I think getting back to, the rheumatology community are so friendly and they are wanting to help. And I think this has come across in all the research that is going on out there.

Katy: Yeah. so much research and that was a complete eye-opener to me.

Debbie: Well, exactly. But also these companies as well, trying to make improvements to people’s lives as well, because they know that there’s a problem. Okay, how can we help improve that? And here’s a solution. Yes, it might not work for all hospitals and obviously, yes. Yeah. But then for me, does that then accentuate the health inequalities that go on because it’s a postcode lottery?

Katy: Yep. But it will for some, yeah. I know there’s someone that lives two miles down the road from me and he’s seen at a different hospital and he’s never had the home delivery problems that I’ve had. And it’s, yeah.

Debbie: Yep. Yep. Because they use different ones and it’s, yeah, again, that gets frustrating, but we have to be in it to try and improve it. So, yeah, but also, you know, coming back to, as you say, Katy, there is other, more academic type research going on as well. And I think you found it, again, eye-opening, but also not realizing that some especially kind of the early career researchers have never then met anyone with these diseases because they’ve just gone into the world of research.

Katy: Yeah, I just found it and I think I was saying this in one of our attempts at recording this yesterday.

Debbie: Yes, tech and Wi-Fi and internet has not been on our side this week. Hence why it’s a little bit late today. I do apologize.

Katy: But it was really interesting because, I guess, you always think scientific researcher, white coat in a lab looking at cells under a microscope.

Debbie: Some do, some do. Yeah,

Katy: That’s my, you know, cause that’s the, some do, and that’s the imaging you see when you see any, anything on it. I just kind of assumed naively, that researchers will talk to patients and that they would have met lots of patients because also once they’ve done the research, like presenting it back to patients and but I guess often it’s just presented back to healthcare professionals. So, and the fact that patients aren’t even included or previously, I know it’s getting better, included in that preparation and that will this actually help?

Debbie: Yeah, yeah, it’s getting much better. Yep.

Katy: really interesting, then it’s helped me kind of understand where, you know, we can help more.

Debbie: Well, exactly. This is what again, what we’re trying to do, but it really has changed. And actually next week we’ve got Dr. Rosemary Hollick coming on and she’s involved in a lot in the research side as well. And she’s very keen for that patient voice to be heard, but it has definitely been changing. It is getting a lot, lot better because there’s sort of two types. You do get, you know, more like the qualitative, like the more the focus groups. can you just come along to talk to this for this research project?

Katy: Yeah, yes. And I think actually that’s the type of thing I’ve been involved with.

Debbie: Yep. Whereas PPIE, which is the public and patient involvement and engagement. Gosh, I love all these words. They just roll off the tongue. You’re there throughout the process. You’re working with researchers to think of their research questions and maybe then tweaking it because it’s like, well, actually, if you then look at say this side that you might not have thought about, this would really impact our lives.

Katy: Yeah

Debbie: And then that helps them to really understand the conditions that they’re looking into and actually that impact then into people’s day-to-day lives. And as I say, it really is changing. And this is something that the charity would, we are involved in, I am involved in lots of ways, but you know, please do come and research this. Please do come and talk to us and also listen to the podcast. And this will give you an insight into, you know, daily lives as well.

Katy: Yeah.

Debbie: I work alongside quite a lot of them and it is definitely changing and they really see the value in what we can bring. but it’s just bringing that back to reality, And it’s like, this is why you need to do it.

Katy: Yeah. Because it’s when it’s actually changing people’s real lives and everyday life and enabling people to do more things with their lives. It’s only a good thing.

Debbie: Yeah, Debbie: exactly. And it brings their research into life. So yes, but it is a slightly shorter episode this week because obviously we are just so so tired. But it was a really interesting and I think a successful conference for our first one for the charity. And we’re really hopefully trying to get our name out there a lot more as well.

Katy: Yeah.

Debbie: Please do follow us on social media. We’re on Facebook, LinkedIn, Blue Sky and Instagram. Sign up to our regular newsletter at inflammatoryarthritis.org. And until next week, Katy, when we have Dr. Rosemary Hollick on talking about research and more about psoriatic and axial spondyloarthritis. it’s goodbye.

Katy: Goodbye.

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 Including:
  • A robotic self‑service ultrasound machine
  • AI‑supported blood monitoring systems
  • Homecare delivery insights that reveal where delays really come from
• 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/