Movement Matters: supporting exercise in rheumatic disease

Do you feel confident talking to people with rheumatic diseases about exercise? and what if your patient is a two-time Winter Olympian?
In this next episode of our Patient Voices series host, Will Gregory, consultant physiotherapist, is joined by Charlie Guest,international alpine skier and two-time Winter Olympian, and Claire Pidgeon,paediatric and adolescent rheumatology occupational therapist. Together, they discuss elite sport to everyday movement, discussing the challenges, opportunities, and practical strategies for encouraging patients' participation in exercise as well as how to support children and young people to stay active after a rheumatological diagnosis.

Useful resources:

Effectiveness and safety of high-intensity exercise in rheumatic diseases—friend or foe? A systematic review

The Effects of Exercise and Physical Activity in Inflammatory Rheumatic Diseases – a Narrative Review 

Thanks for listening to Talking Rheumatology! Join the conversation on X using #TalkingRheum or tweet us @RheumatologyUK.

BSR is the UK's leading specialist medical society for rheumatology and MSK health professionals. To discover how we can support you in delivering the best care for your patients, visit our website.

Transcript

Welcome to this Talking Rheumatology podcast. This episode is part of our Patient Voices series where we discuss key topics with experts and patients together. This episode is focused on supporting exercise in rheumatic disease. My name is Will Gregory, consultant physiotherapist and clinical lead for rheumatology at Salford Royal Hospital in Greater Manchester, and also the current vice president for health professionals at the British Society for Rheumatology. I'll be hosting today's conversation. I've got two excellent guests as a fellow clinician, I've got Claire Pidgeon, occupational therapist in Paediatric rheumatology at Birmingham Children's Hospital. And our main feature we're delighted to have joining us is Charlie Guest, double Winter Olympian, five times British slalom champion, eleven years at the World Cup circuit and the first British woman to win an Alpine European Cup race, a feat she ended up achieving three times. But, Charlie, there is another reason we've invited you to this rheumatology podcast. We'll get onto in a moment but just introduce yourself to our listeners and tell us a little bit about your sporting career to date. 

Yeah, absolutely. Well, thank you for the lovely introduction. I grew up in the lower highlands of Scotland, just north of Perth, and my grandparents lived up at Cairngorm Mountain. And so, on the weekends I would just head up north and go skiing. And I was a kid that loved the outdoors, loved being competitive, played every sport, whether I was any good at it or not, but gave one hundred percent every single time. And a full effort was always my mantra and somehow ended up getting through school, coming out the other end on the British junior ski team and a couple years later into World Cup. 

So quite a driven individual I suppose. And, um, there's a quote I've got that I found online that you had said that I thought was really powerful in that you said I'm an accidental athlete. I wasn't born to do this, and I thought that was quite countercultural. That idea of this isn't something that was destined to happen for you, but rather it was your drive that pushed you through this. 

Yeah. Well, I found um, yeah, I always say that because I think a lot of athletes or professional sports people, they, they do it from day dot and it's always the goal to be an Olympian. I think I remember sort of being twelve years old, eleven years old or something, maybe even younger than that, but just watching the Olympics on TV thinking, oh, that would be cool to be somebody that could do that. Um, and it is always sort of sitting in the back of my mind, but my parents didn't have a sort of path planned out and I sort of bungled from one stage to the next, making a lot of mistakes along the way. But as I said before, I gave one hundred percent to absolutely anything I did. And once I left school and it looked like, okay, there could be an opportunity here. That was when I really sort of buckled down and I was like, it's now or never. And honestly, pedal to the floor and yeah, off I went. And yeah, we'll always be a sort of lesson that I'm proud that I showed myself through that stage of my career. But I will take forward with me for the rest of my life is just always throw yourself into whatever it is you're doing, and the outcome is usually pretty good. 

Yeah, absolutely and the accolades speak for themselves on your resume there, but it's not been smooth sailing all the way, has it, or smooth skiing, I guess all the way we're thinking about in this situation. And there was this spinal injury. We're not going to talk too much about today. We're going to focus on the rheumatology specific challenges you've had, if you don't mind. So let me take you to the summer of well, I say the summer of twenty nineteen, you're in New Zealand. I guess it was winter in New Zealand at that point. And you follow the snow in your career? 

Yeah, exactly. Um, yeah, summer of twenty twenty, I was in the form of my life. I'd overcome these horrendous back problems that had been plaguing me for four or five years. That was fantastic. Uh, I'd won my first European Cup, sponsors were coming on board. Everything was, you know, as it was meant to be. Um, yeah, I was in New Zealand winter getting some snow time in and I woke up one evening just with my left shoulder, it was burning and it was on fire from inside out. And I was like, oh, I have no idea what on earth has happened here. I was like, maybe I did some press ups earlier, maybe that's it. But that seemed pretty unusual. I was like, I must have trapped something somewhere. Um, and I was staying with a homestay family down in Wanaka, and I snuck downstairs, grabbed some frozen peas out of their freezer onto my shoulder, back to bed. It was about 2am and nothing, no matter what I did, would make this pain subside. And so, I was just lying there, awake all day and then all night. And then even in the morning, woke up and couldn't lift my shoulder up. And I was knackered, I was absolutely exhausted. And I still sort of got myself up the mountain not before I tripped out of the front door also on the way there. And I was like, what is going on? and throughout the day saw a physio on all of us and, you know, still couldn't really lift my shoulder. But then randomly by the next morning, all totally fine again. Okay. This is very strange. Two weeks later, exactly the same thing, but on the right shoulder. And at that point my physio from home was like, that doesn't sound too natural. Too normal to be on both sides. Yeah, this is good news. The physio picked up the idea this might not be a sporting injury. I suppose from that that kind of presentation. Yeah. Yeah exactly. And then I suppose from then onwards. So this must have been August, September time and I was up in Finland then preparing for the first World Cup of the season and about five days before my right wrist, I woke up again, two am burning wrist. But this time it was accompanied by a really red sort of, um, exposure on the skin. It started to swell on the other side and I couldn't like hold my ski pole properly to then, you know, slalom skiers had to hit the gates out of the way. I didn't have the strength in it to be able to withstand that pressure. And so again, it was really odd at that point. She was like, no, no, no, okay, we're getting home and we'll we're you're going in for some blood tests because this is absolutely bonkers. And you know, went in and my doctor I was working with at the time, it's like it's probably nothing, you know, anything can show up on this. Like even if you got cold, it'll show up with something. But um, no, I showed really high inflammatory markers and then was referred on to a rheumatology specialist after that and that rheumatology specialist we think had some sports and exercise medicine experience as well. So you end up in the right clinic with the right person, I guess. Yeah. No, I was really lucky. I ended up with a consultant who worked with a lot of team GB athletes and involved in the sort of sports workings of it. And I told him my symptoms. I'd actually had like a little wrist flare up on my way down to London a couple of days before and he was like it sounds to me like you've got palindromic rheumatism. And I was like, oh, okay, what's that? And he's like, here we go buckle up and I guess my sporting career changed and how I viewed myself had to change as well. And that's interesting. 

Your sporting career changed rather than finished. So tell us about how long were you still competing with this diagnosis? And I guess with the treatments that that followed. 

So I had another five to six years of my competitive career still there and I reached my highest highs in those moments as well. So it definitely didn't, um, you know, stall me and stop me in my tracks right there. And then there were definite challenges I had to overcome, but really the main things that way it changed was just how I had to view myself and my health. We talk about looking after the person, looking after the athlete first, making sure your sleep is right, your nutrition is right. There was not a single day that I could let that go and maybe just, you know, stay up an extra bit late or go out for a drink and be like, it'll be fine. I'll still make training tomorrow because all of those things had quite a significant knock on effect and I did have to learn all of that but um, yeah, I managed to push through and I think you nodded to it earlier. Is that determination really? Then as I'd come to grips with the diagnosis, the determination really came out and defined me again in a slightly different way moving forward until the end of my career. 

Yeah. And I think you've probably answered the next question already, Charlie. And that, you know, it's both mentally and physically. You had to change your approach after the diagnosis, I suppose. 

Yeah. Um, mentally it was quite hard to come to terms with, as I said, as this all was kicking off, I was in the best form of my career. I had sponsors coming on board. Everything was really moving up a notch. So to then sort of have a diagnosis and if I'm being perfectly honest with you, at the time, I was like, I can't have this I'm twenty five years old. I can't have a disease that old people get. Are you insane? Like, I'm fine. Like I can lift one hundred and twenty kilos, I'm not like that. I'm, you know, I'm, I'm an athlete. And I really took my time to come to terms with actually. Do you know what the diagnosis didn't affect that identity as an athlete and someone who was really strong and powerful. It was something that just had to coexist alongside, and it was just something else that I had to had to deal with and had to manage but it took me a good eight months to really accept it and then decide, okay, yeah, let's get the medication, let's sort all this out and get on top of it. So the medications were offered a bit earlier, but it took you a bit of time to say, yeah, I probably do need to treat this with some long term, uh, tablets?

Yeah. I mean, I refuse to believe that I had this condition. I was like, oh, well, I'll stop eating tomatoes and red meat or whatever it was and I'll be fine like, this guy doesn't know what he's talking about. This is stupid. Um, but obviously the flare ups kept coming. I had so many nights where I just didn't sleep, and I was just getting more tired and more tired and obviously when you're trying to train at high intensity almost every day of the week, that's very, very tricky to allow to coexist. So, I thought, okay, we'll do the medication and yes, I started on hydroxychloroquine, low dose of that and actually that's still what I'm taking today. So over the last. Oh, what was that? It's a, it's a long time now. Um, almost. Wow. Yeah. Nine years, eight years, whatever it is. Um, I've been taking that. 

Thanks, Charlie. And just thinking about that initial getting the diagnosis and the impact it might have on your career, I suppose. And we're thinking, Charlie, with you as at a very high level, as a twenty five year old having this change to your self-perception, I guess. And it does ring true for our adolescents, Claire you've done some work in the kind of high level sports field with some of your adolescent patients, I believe.

Yeah. It's so interesting to hear Charlie's story and sort of it really resonates and will resonate with paediatric clinicians, working with high level athletes about managing the demands of their sort of elite training. And also as a young person, the other demands that are placed on them alongside living with a long term condition and coming to terms with it. And that can be really, really tricky andd the the thoughts that might be going through their head and concerns around, um, if they are part of an academy or if they're a part of a sports elite sports team worries that they may not be selected. If you know, they disclose that they have a health condition and their real concerns that are sort of spoken about in a clinical setting, and it's really hard then to help them to navigate what they should do but yeah, supporting them and really thinking about how they sort of manage their sort of the demands on them is really, really important. 

And there's an element there of disclosure by the sounds of it, isn't it, Claire, that the, the idea of you, Charlie, you described a period of coming to terms with it and accepting, uh, living with this diagnosis. And I suppose that would be perhaps even more magnified for our children, adolescents in sport where there might be an impact on their ability to do certain things or be accepted for certain next steps of their career. 

Yeah, definitely. And like the reality, I guess, and what their thoughts of, um, the expectations of the sports teams might be quite different and their belief that they won't get selected may not necessarily be actually true, but that's the sort of the system and the environment they're in, and they're comparing themselves to their peers that don't have a health condition. And that's a real worry for them. But it's interesting to sort of what we try to do within the sort of the clinicians that work with these young people is help them to build their sort of voice and recognise and make links to what works and what doesn't work for them and help them to self-advocate. So talking up and speaking for themselves and recognising the importance of helpful strategies and making links is really important. So rest and prioritizing time to sort of recharge is really, really important. So I'm always banging on about that when I'm talking to these young people. And I think you're covering kind of elite sports, but also the general population. And there's definitely, I feel for all of us, a sense of identity with regards to our physical capabilities, but perhaps more so in those adolescent years when you want to fit in and feel like your peers and you want to join the sports team and do the same activities of everyone else. And we definitely have a role, uh, within rheumatology services to advocate for the ability to still do as much as possible and that the rheumatology doesn't diagnosis doesn't limit potential if appropriately managed. Absolutely not. What I try to sort of alongside my physiotherapy colleagues is encourage movement brings them joy. And if there's movement that isn't this typical sort of sports that aren't always offered within a school environment, say, but it's movement. It's something that they enjoy, then we actively encourage them to get involved in those sort of sports wherever possible. And I'm going to move back to adult patients from my experience in that I am now giving diagnoses to quite a few people, particularly with the axial spondyloarthritis. And we know within that group exercise is even stronger as an anti-inflammatory. So I do, and this is interesting, having Charlie in the room with us. I should admit, in my script, I'll say to most people at diagnosis, look, you're living with this new long term condition. It's probably going to be with you for the rest of your life. It may not, but we do see people living with these kind of conditions who are still competing in the Olympics and winning world championships and these kind of things, and I can't promise you any medals going forwards because I don't know what your sporting level was like before, but you should be able to get back to those things that really matter to you. And with the right treatment, you can be as fit and active hopefully as you were before. Um, that diagnosis. So I think that's a script we all have to land on. 

Charlie. Come in please. 

And I think everything that Claire is saying in terms of having that voice for yourself has just been so crucial and so important, and giving yourself the time to learn your condition, learn how your body reacts and responds to your condition, but also to your lifestyle. And everything that comes along with it is just so crucial. And I think potentially, you know, that's the biggest way that clinicians can help, you know, someone who's active and athlete, a young athlete is help them, guide them to be able to understand what it is to, to understand your own body, what it is to be able to have that conversation with a coach, a parent saying, actually, do you know what? I really need a day off because my shoulder is starting to flare up. I can feel it coming on. I need that time because I know that if I take the time now, the flare ups are going to be reduced further down the line and I'm going to be back to normal quicker, or at least in my experience. That's how things have worked. That's quite powerful. I don't know how you reflect on those initial conversations in rheumatology from your point of view. Charlie. 

I suppose I was, as I said, lucky to, to have Doctor Reese give me the diagnosis. And because he worked in sports, like it was almost like, oh, don't worry, it's fine. Um, you know, hydroxychloroquine, it's fairly like calm medication to go on to. But at that point I was like, I'm not taking medication but as soon as I came around to it and sat down and had the conversations and understood that, you know what, there's no real long term damage happening to my joints right now. I can train, I can continue it is just a pain management and fatigue management and exercise that I'm now on and I'm now taking part in and so I think to have that positive attitude where I wasn't being told to limit anything that I was doing, wasn't being told to regress on any of my training. It was very much, no, we can still support you to do absolutely everything that you do anyway, and in reflection is probably really refreshing, and I was lucky to have that experience because I appreciate it's probably not the same across the board and I think I worked in, you know, a multifaceted team. And one of the conversations I ended up having actually maybe a year, year and a half down the line with my physio was actually maybe we didn't appreciate the sort of gravity of what happened to you at the time, because I did sort of flow with it. I remember a psychologist saying, perhaps we should have helped you a little bit through that transition of understanding who you were and what was happening in the diagnosis and how you were taking that in so it probably leaves room for that wider team of experts around the patient to come in and say actually that especially for a young person, an active person, where your body is part of what you do every single day. Let's have those conversations and see how we can help. 

And obviously, you've achieved almost more professionally post-diagnosis than you did before. From a sporting career point of view, but you've said kind of before we started recording that perhaps you weren't doing as much training as your competitors. You had to be a little bit clever with how you spent your time and your energy living with the rheumatology condition. 

Yeah, I really had to look quality over quantity every time and making sure and again, having those conversations with coaches, with team, with those around me that what I was doing was absolutely beneficial because I didn't. I no longer had the I thought I no longer had. I just knew it was better for me to maximize on recovery time. So rather than going out for a three four hour bike ride, which takes a significant time of recovery and, you know, stress on nervous system is can we condense that into a much harder hour, hour and a half, which then gives me an extra couple of hours to maybe just come home, get my recovery boots on or whatever, and sit on my couch for a little bit. And it's not the typical way that everybody did things. It did raise a few eyebrows, but, um, sort of drilling down to what was absolutely necessary for me to do and why, and then follow through with that plan and trust it was crucial but then also I had those unexpected days off and needed to take because I suddenly did feel my shoulders stiffening or, you know, sometimes it would even be my jaw, my wrists, my ankle. I could feel that coming on. And it was like, no, no, no, okay, go to bed early, eat some good food, get up, go for a walk, but don't stress yourself out and just take those days. I mean, yes, it was stressful if that would happen on a race day and I think that only happened once or twice perhaps, but um, it was about, yeah, having that measured approach to, to each and every day that the coaches and those around you also understood. And I suppose you had that support from those, those colleagues, your team as such, to let you know you were doing enough to still compete at that level, but not to overdo it and not feel bad that you weren't doing the four hour bike ride or whatever your competitors might be doing, or you might have done prior to that diagnosis. Um, with some it was easier than others. I'm not gonna say it was plain sailing to be able to have these conversations because they are difficult. And, you know, coaches, their job is to get the most out of you to make sure you're complying. They've made a plan that should work. And then you come in and say you know what I can't do maybe twenty five percent of that right now, we're going to have to tailor X, Y, Z, and that that's difficult to do. And especially when you're younger or you don't feel like you have as much power within a group. But if you can bring those on your journey with you, educate them to a certain degree on, do you know what? If I take a day off now, it means that I'll recover better tomorrow. I’m not going to have as much cognitive mental fatigue and I’m going to reduce my injury risk for Friday. If I just take Wednesday off, then they're like, oh, okay, well, that makes a little bit more sense. 

So Charlie, you just mentioned the concept of this for our bike ride perhaps being not the best way for you to think about your fitness and thinking about our patients. We're seeing in rheumatology services up and down the country, we are sometimes challenged with people who come in and say, I always used to be able to do this for our bike ride every day or whatever. Why can't I do it now? That's what I want to do. And I suppose we have a job there to think about. Well, actually, what's the most achievable thing to best control your condition and keep your fitness at the the right level? So we'd talk perhaps about pacing activity or as you've described, Charlie, that shorter period on the bike, if that's the exercise choice of form, but at a higher intensity level. I don't know if you want to talk into that, Charlie. 

Um, yeah. And I'd say that's, that's the, that's basically the crux of the struggle that we came down to with the training regime or, or through the summer, especially when it's physical conditioning. And because there is this sort of, you've got to be out on the bike for hours sort of mentality. But, you know, maybe it's then if getting out on the bike for a long time is what you enjoy doing, it's maybe still done that two out of three times, but the middle ride becomes that shorter interval session. And you know what? You might even find that it increases your power at a certain range. Or you, you get something else out of it by diversifying. But I'd say to start with is always having an open mind, especially when these training changes are being suggested. Give it a shot because you don't actually know how it is going to turn out, because you might get some added benefit out from it from the end of the day but I can guarantee one thing is that having that extra couple of hours of rest and to sort of curb that fatigue is going to be helpful. 

And I think this speaks into our goal setting conversations we'll all be having. Claire, coming back to you with your experience with our younger patients. What's your kind of tips for that goal setting conversation and how we best respect the demands on both sides,

I guess we definitely need to focus on the young person's goals, but also having an element of understanding where they are sort of in terms of their knowledge of their body and how to manage the highs and lows of activity so we would have a sort of an educational approach and collaborating with them and probably looking at problem solving. So you've got this for our bike ride to do. How have things been over the last two, three weeks? Talk to me about that. Do you think that's doable? And then we'll sort of thing and come to sort of a, an agreement about the steps that could be sort of implemented to get them to that goal. And that might be over a period of time and things that they could be implementing alongside the physio support and exercises. It's just considering that things can't be done and fast forwarded to that sort of back to how they were their previous level of elite training. We might need to rein things back, and sometimes that can be tricky to come to terms with, and especially for a young person that's really still trying to understand their body like, and they've got lots of changes happening anyway, regardless of the fact they have a long term condition and they are sort of in an elite sports person, they've got multiple things going on at the same time and demands on their time. So it's a lot. And so, we need to keep that in mind and be sort of mindful of how we tackle that with them and with kindness and compassion and sort of just revisiting it regularly. And it may be that we need to help them to track and monitor first as a way of bringing their awareness to it. So using a technology, they may already have access to that technology and be using it within the sort of the sports teams or the academies. So tapping into that and helping them to sort of see the themes and where performance dips and why that might be. So yeah, and I think I'd take that into the adult group as well. And the non-athlete, I suppose, and I'd put a shout out for the NHS couch to 5K at with regards to support to gradually increase fitness from that couch baseline level to, to, to build up, you could start a little bit further into the program, or you could have to spread it out if you're struggling to meet the goals that come within that but with the apps we have now, the monitoring we can do with our own physical activity and those of our patients, we can behave a little bit like Olympic athletes perhaps.

So I'm going to come back to Charlie with regards to monitoring. What did you find was helpful with regard to monitoring your activity levels, when you should do more, when you should do less, and kind of being better at listening to your body's kind of coping strategies. 

Yeah the one I find the most success with was heart rate variability and it was measurements that we started taking actually prior to me having the diagnosis and I found that my body did, you know, I could see that as the HR lowered, it indicated that I was under stress. I'd been training harder, but if it didn't bounce back on a day off or it didn't, you know, lift with a period of recovery, it indicated that there was some stress, I was getting ill, etc. etc. so then when I had the diagnosis, I could see and understand that as it dropped, if it was in response to training, fine, but if it remained low, then that indicated, okay, you're getting tired, you need time off because you're not recovering for whatever reason. Um, and I found that my flare ups were really linked to stress and whether that's physical or psychological, psychological, actually almost sometimes worse, because I was never switching off and the HR responded to that as well. So it gave me a really nice indication of you need to back off. You need to take some time away. You need to reset and, and gave me that reminder of, okay, yeah, it's a non-negotiable today, your heart rates have been low for four or five, six days in a row and it's not lifting up, give yourself a break and I suppose you learnt to listen to that. 

I guess you say it's non-negotiable, but I would imagine based on what you've described, first time it happened, you went, no, I'm going to push on through. And then you had that setback from there, I suspect. 

Yeah, yeah and everybody will be different so it will take a certain amount of time, I suppose, to get in tune with what those metrics mean for you because, you know, we all have it on our smartwatch or whatever. And you can see these numbers you know, I don't actually know what that means but the HRV for me was luckily one that I was already tuned in for andd it'll look different for each, each person but you're right, I absolutely pushed through a number of times and, you know, get the flare up and then think, oh, it's fine. I've now taken the day off. I can keep going and then it sort of cycle into flare up, into flare up, into flare up and then it became becomes so much harder to lift yourself back out of that cycle again, so I learned, okay, take the day off early on, you might prevent the flare up, or at least keep the flare ups down to the minimum amount of time, which for me is like one or two days. 

And so then you start to recover again afterwards and you've mentioned, um, the, the issues at your shoulders and I think your wrist and your jaw joints, you said. And there's painful joints as part of your experience. But also fatigue was a big part. Or is still, I guess, a big part. 

Yeah. Okay. Yeah, the fatigue is huge and that's been one of the hardest ones to communicate to people sometimes is because it's just feels it's a whole systematic. I'm tired because sometimes with the flare ups, when they're really painful, you don't sleep well. So, you think, oh, I just haven't slept. But there's another level onto it. And, um, you know, I talked about it when I was diagnosed. I was tripping up over everything. It was like my brain and body weren't connected in the same way. And I'd forget stuff and get really stressed because all of sudden things don't feel as manageable as they normally do. Um, and so again, it's about being kind on yourself. I think when you find yourself in those moments where things are just getting out of control and it's like, okay, this isn't necessarily my fault. Uh, you know, it is down to the condition, but what I can do is give myself the time, the breathing space, the headspace, go for a walk, a gentle swim. And I use like some breathing exercises to try and regulate nervous system sometimes to, to, to then hopefully allow you to recover from that space because it is a huge amount of stress that your body is under with one of these like flare ups, attacks or whatever it looks like for you. 

And you've mentioned kind of, that is a good way to manage your stress. We also know that exercise is in and of itself an anti-inflammatory. So it should help to treat the condition itself. Um, I don't know what your experience is with that. When you've had periods where you've not been able to exercise so much, have you noticed your condition becomes a little bit harder to control? And I'm going to slightly embarrass you by saying you've now retired from your professional sport. And how are you finding that balance of your exercise with other commitments? 

Yeah. Um, so number one, yes, if I stop exercising then I noticed that I'm immediately more irritable, more and then that's where that mental stress and stuff starts to come in, which then leads into, you know, putting myself at more risk for a flare up to happen but also if if I am continuously exercising, I am strong. The flare ups are so much more predictable. Um, you know, you can feel one coming on. Whereas sometimes if I haven't like, I'm going to be honest, I retired and I barely did any structured exercise for maybe six to eight months and you know, you know, the wines were coming out, friends were around celebrations this that the next thing and the flare ups were off the charts. I actually had a week, ten days of flare ups, which is really uncommon for me. The longest I'd had before was maybe one, two, three days but this was then ping pong around my body every day I'd wake up with something else that was wrong but as soon as I've got back into that routine of exercising, prioritizing that within my day, um, eating well. Sleeping well. You know, cutting, reducing alcohol significantly. Then it's meant that actually I'm fine, 'm actually really okay and I again, from the professional athlete side into being retired now, touch wood, the flare ups are so much better because I'm also I'm not pushing my body to an extreme level anymore. I don't have, you know, maybe mental stress of traveling, being in a different place every day, moving around hotels, you know, I'm much more firmly put and yeah, it just seems to have so much more control over everything going on in my body but exercise is the real basis on which everything else seems to sit. 

Claire, I don't know if that's something you'd reflect among your younger patients. 

Oh, just listening, Charlie, to your sort of I think the theme running through it is the fact that you've used movement and exercise, whether you're sort of decompressing and trying to recover and relax. So those restful walks are a way of recharging and movement and exercise then is bringing that sort of sense of calm but also sort of helping you to sort of navigate the demands that you're having. But even in sort of retirement and sort of your sort of second career, now you're using movement and exercise as well. And I think that really resonates with the cohort of young people that I work with, is helping them to use movement and exercise as a form of relaxation, as putting things into sort of a manageable form, as well as using it to keep fit. And, you know, there's so many benefits to movement that I don't always need young people to be convinced of. They are already on board with me, but other young people that haven't had the opportunities to have use exercise as a form of sort of managing their condition, we sort of introduce them to that, whether that's with sports days that we run at our centers. And I know that that's happened across the country in pediatric settings. We've had sports days, but also some of the charities we work alongside give opportunities for young people to access sport and exercise with the community. So that's really sort of positive and something we signpost the young people to regularly. And this speaks into a really good, motivated, kind of supported self-management package.

And there's a lot of self and learning what you've done for your management strategies. Charlie, how does that fit in with your care from the NHS? What's your access to services? Are you letting us know when you need us in rheumatology? Are we contacting you too regularly or not? Frequently enough? And I'm thinking a bit a bit about patient initiated follow up here and this push to try and avoid unnecessary appointments, but also have access to rheumatology as and when needed. I don't know what your experience has been, Charlie. 

Yeah. So I suppose I've been able to experience healthcare on both the private and then the NHS side, which has been it's been cool, but also it's enlightening. And I no longer have access to the private healthcare that I had whilst I was an elite sports person. And I, and I probably won't ever with this condition again because I can't get covered now, but um, within the NHS, I'd have to say. And again, I've moved around a bit since I've retired and my partner's in the military actually. So I've bounced around a few areas and I would say it's different depending on where you are, which is quite stressful as a patient to navigate because it doesn't seem like the monitoring is the same in different NHS areas. And where I am now, I have to ask every year I need to be seen, can I get a checkup? Can I get bloods done? Yeah, and because I'm on hydroxychloroquine, my five year OPP eye test came around and I really had to push through. First of all with the GP to then get referred to the right place to. To see someone. So I have to say that it feels as if it's on me at the moment to be able to manage my condition and I suppose again then I was lucky that I saw a consultant or Doctor of Rheumatology expert at the beginning who understood sport and gave me a list of pointers of things to watch out for. When do you want to go and see someone X, Y, and Z and remember your five year test and push on x, Y, z. You know your fingernails are starting to go if you get a rash. All these things like get it seen to because without that, I think I would have felt far more in the dark if I'm being perfectly honest. 

Yeah. And that probably speaks into that early diagnostic journey we need to give our patients lots of input. And, you know, we're currently hoping to see people every four weeks when they're newly diagnosed just to make sure they're getting the right messaging, the right management strategies with that and that's in the NHS but it could be as your experience, Charlie, with the significant amount of support you had through private healthcare at that stage, we can offer that in the NHS. It's making sure we front load our services to ensure we've got longer appointment slots and more chance to get to know our patients early in their diagnosis and what their, you know, their key management bits are from there. If you're moving regularly, that's difficult as well. The nature of your family set up. And therefore, I think it is concerning to hear you having to advocate for yourself when you get to a new area, a new GP, to get that rheumatology support. 

Yeah, and I would say though, that it's always been very open when I have asked, you know, when I have asked and I have got referred through and I have finally got to the right person, then the support is there. And so I then say on top of that, if you are a patient, you know, and you're listening to this and you're thinking, oh, they haven't asked me for a check up. It's like, just honestly do ask and I think there is something quite empowering from arming yourself with the right information to then be able to take action for your health and not leave it in somebody else's hands because to me anyway, it is one of the it is the most important thing that we have, you know, who are we unless we are able to walk, walk, you know, we're able to live the way that we want to live and but the most frustrating thing and like the same breath has been going into those appointments, maybe not feeling understood or being told, okay, um, you know, my condition is palindromic rheumatism. It's flares come and go and there's no long term damage on the joints, but that could progress into, um, a rheumatoid arthritis at a later stage. And I had one consultant that I saw was just like, okay, well, I'm just going to call this rheumatoid arthritis. Um, and this is the steps that you'll go through and blah, blah, blah and I was sat there thinking, I've never, I don't think that's my condition, I've not been told that. I don't think that's a necessary step but she didn't have time, I don't think, to sit with me and have that real conversation. 

And I think it's just so important, especially with something that's with you for life, to be able to sit down and ask your questions and feel secure that the people you're working with understand you, your condition and are doing everything within their power to make sure you have the best outcomes as well. And I think there's a power there in that face to face appointment as well as, you know, looking at phone calls and I don't know, Zoom and other platforms to do consultations. But I think there's something very powerful about being in the room and having that time to fully read the kind of verbal and nonverbal cues you're getting between clinician and patient, for that matter, to ensure you're both on the same page and happy with the discussions that have formed the consultation for the listeners, I'm really hopeful this has been very impactful for what you're doing in your day to day job and whether that's clinicians. But also, we hope this is speaking to people living with rheumatology conditions, whether they're thinking about elite sports or they're just thinking about doing the things that matter to them. I think having an example of how you can manage these conditions and still perform at that maximum level for you is really, truly inspiring. But I'd like to leave the last words to the three of us to think about kind of top tips and what we're going to take away from this discussion. Claire, I'll put you on the spot, if that's okay. 

Um, my top tips would be to always listen to a young person that is coming in to see me and really understand what their goals are, and the demands on their roles and routines, and really focus in on that and support them and be flexible in the approach of how we can sort of they can access us at a sort of a manageable level, especially if they're working within a sort of lead setting, but we would provide that at all costs anyway. But really thinking about their sort of an age appropriate developmental stage of providing the input. So really taking into account where they are in their development and their understanding. So yeah, that would be my top tip. And I'm going to go next so that you can have the last words, Charlie, if that's okay. And I suppose my, my takeaway is really thinking about your journey and the impact that first person you saw in rheumatology had with regards to, yes, you have got this issue. It could be with you long term, but you can still be highly physically active. You can still achieve your goals. You might need to slightly adapt what you do to get there, but you will still achieve those. And I must give a shout out to the physiotherapist who said, oh, one shoulder and now the other shoulder. Maybe we should get some bloods and that ability to just pick up. There's something that's not quite what we'd expect here with regards to normal aches and pains you might get with physical, um, activities. And then I think the big take home for me is the ability you've had Charlie to adapt and still achieve hugely impressive feats whilst living with a rheumatology condition. And that's something that we should all take away and inspire us either as people living with these diagnoses to achieve our maximum, whatever that may be. But for us as clinicians to make sure we're always heading for that maximum for every patient we see, no matter what their starting point is, we know that exercise and physical activity will impact and improve their outcomes, but also help them physically and mentally in dealing with the condition. Yeah, and honestly, I think I'm just going to echo a little bit of what you said. Well, and the best people that I've seen or, and I think now, especially with like on this conversation, I've been so privileged to see somebody to start with that didn't put any boundaries or barriers around me, given the condition. And they still let me be me. And they were willing to, I guess, adapt, you know, medication levels depending on what was going on in my life. And that's meant that me as a patient, I'm also not self limiting or I'm not scared to do something because of the condition. I think that can so easily happen that you see people, they're like, oh, I can't do that. I've got something in my knees. And it's like, well, actually you maybe you can like try, but they've already got this idea that they can't. And for that to happen, it is take the time to listen and understand your patient fully. And as the patient, take the time to understand yourself fully and what you know, your various day to day routine means for you and your condition because you know, it's just another part of you now that is is there for you to discover and learn to work with, rather than letting it dictate who you are and what you can do. 

Brilliant. Thank you very much, all for a really exciting, informative and I hope practice changing chat. And thanks to all for listening.