Episode 69 Dr Simon Stones

In this powerful and deeply human conversation, Debbie and Katy sit down with Dr Simon Stones, award‑winning medical communications specialist, internationally recognised patient advocate, and Chair of the EULAR PARE Committee. Diagnosed with juvenile idiopathic arthritis (JIA) at just three and a half, Simon shares his journey from childhood symptoms and difficult treatments to becoming one of the most influential voices in patient engagement.

He talks candidly about growing up with chronic illness, the emotional impact of treatment, school experiences, his mother’s influence, and how lived experience became the foundation of his global advocacy work. Simon also reflects on grief, pacing, humour, relationships, and why he believes in doing things now rather than waiting for “one day”.

This episode is full of honesty, warmth, and wisdom, a must‑listen for anyone living with inflammatory arthritis, caring for someone who is, or working in healthcare.

Key Topics

• Early signs of JIA and the diagnostic journey
• The role of Simon’s mum and her own autoimmune conditions
• Oligoarticular vs polyarticular JIA
• Severe treatment side effects and tablet phobia
• School experiences, adaptations, and supportive teachers
• Transitioning from paediatric to adult rheumatology
• Discovering patient advocacy at 18
• The value of lived experience in research and policy
• International advocacy through EULAR
• Balancing work, health, travel, relationships, and caring responsibilities
• Grief, perspective, and “doing things while you can”
• Humour, identity, and embracing difference

Quotes

“I didn’t realise the value of lived experience as expertise, but it’s one of the most important things in the room.”

“I would sooner be in a wheelchair than take that tablet. That’s how bad it was.”

“We’ve got one chance at life. Make the most of it, regardless of what’s thrown at you.”

“If people don’t accept who I am and what I need, they’re not the right people to be in my life.”

“Don’t wait. If you have the opportunity to do something, just do it.”

Resources Mentioned

• EULAR PARE Committee: European patient organisations working together to improve rheumatology care
• Clinical Studies Groups (UK): patient‑partner involvement in research
• Involve Conference: UK public involvement in research
• Simon’s Instagram: @simonrstones
• Follow Inflammatory Arthritis UK on Facebook, Instagram, YouTube, Linkedin and Bluesky
• Sign up to IAUK newsletter at inflammatoryarthritis.org

Keywords: juvenile idiopathic arthritis, JIA, patient advocacy, lived experience, EULAR, childhood arthritis, autoimmune disease, chronic illness, polyarticular JIA, oligoarticular JIA, methotrexate nausea, transition to adult care, patient engagement, rheumatology, inflammatory arthritis podcast, Simon Stones

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: And Katy

Debbie: Today we’re delighted that Simon has managed to find some time in his diary to join us. So Simon was diagnosed with JIA at around three and a half, and we’re going to get into his story in a moment. And Simon is an award-winning medical communications and patient engagement specialist, as well as internationally recognised patient and carer advocate. With over a decade of experience, he has worked across the public and private sectors to ensure meaningful public engagement in healthcare services and research. In 2019 and 2020, he was named among the top 100 most influential people with disabilities in the UK. So many congratulations, Simon. And in 2023, he received the inaugural Rising Star Award from the International Society for Medical Publication Professionals. If that’s not enough, he is now currently chair of the EULAR Paré Committee. So, Simon, thank you so much for joining us. How are you?

Simon Stones: Thank you for having me. It’s exciting to be here after watching many episodes

Debbie: So, take us back to your childhood and your journey to diagnosis.

Simon Stones: It’s been a long journey, and I don’t remember life before living with arthritis and other conditions as well. I think it all started with my mum. So, my mum had many autoimmune conditions. She had lupus, had myositis, she had osteoarthritis and various other bits and pieces. So, she’d lived 10 years before I was born with these conditions and back when treatment was really inadequate and poor and actually it was quite life-threatening to her. So, she had that awareness and she was always, you know, she was an older parent when she had me, she was 42, because of the treatment they said she would never be able to have children. So, I came as like this miracle baby when they kind of moved to retire early. And she was always worried about, is what I’ve got genetic, am I going to pass it on to my child?

I think that was always at the back of my mum’s mind, I you know I was a healthy baby and it was only when I was about three years old that my mum started to notice two changes, so was two joint changes on one hand and one thought on the right hand side. My mum was just a little bit concerned and just spotted that you know something’s not quite right and I think I was starting to limp a little bit and so she asked me to her consultant rheumatologist, who she had a really good relationship with. mean, this is back in the day when that doctor actually sat by her bedside overnight when she was really poorly.

Katy: Yeah, because people stayed in, didn’t they? They stayed in hospital a lot back then. Yeah.

Simon Stones: Yeah, my mum was in, for one period, six months in hospital.

Katy: Wow.

Debbie: my gosh, that is a long time.

Simon Stones: Yeah, so she had that relationship with him and he said, I’m not quite sure, but I feel that there is something and what I’m going to do is refer Siren to my colleague who is an adult rheumatologist, but also does the paediatric clinics So I got a direct referral to that consultant who saw me and obviously I don’t remember any of this information. And it’s only from what my mum’s told me and also by getting all of my medical records, which were like this, I’ve been up on paper.

Katy: And we talked about this last week. So, you’ve kept all of your medical records, or your mum kept them for you, which is incredible. Sorry to diverge, it was something we spoke about last week in quite a lot of detail that how important sometimes that can be to keep your records.

Simon Stones: It’s fascinating because there’s all of these conversations. I mean, this is also back in the day when you didn’t get a copy of your clinic letter. So, it’s really interesting to see how they describe in me and sort of, know, probably the things my mum would not have seen. So, I find it fascinating. I kind of want to do something with them, you kind of publish them or whatever that looks like. But I mean, for me, it’s a fascinating way to probably borrow other people to death. But it’s really interesting looking at those early…sort of diagnostic tests and there’s the pictures that they used to take of my little hands and feet. That’s all kind of like documented there. They were talking about we’re not really sure what’s going on, we feel like it’s non-inflammatory, which was interesting, that it’s more of a kind of bone dysplasia potentially. So there’s all like these different terms used and you know think the decision was okay we’re not going to necessarily do anything with this individual. And I there was a bit of time when there was a bit of back and forward and then the tone seemed to change. that was the first time that I’ve seen that it said oligoarticular, juvenile idiopathic arthritis. So I had the two joints and obviously that was the route they were going down. And it would be that we would do conservative watch and wait kind of thing. So obviously then this is when my…

Katy: Okay. What is Oliarticular? Sorry.

Simon Stones: Great point. So, it’s usually two or less joints affected by juvenile arthritis. this is kind of like age four, five, when like my first recollections I can remember coming to mind. And seemingly being relatively, you know, normal in inverted brackets, you know, going to primary school, my memory is always feeling a little bit different. I don’t know why I was always quite introverted and very quiet and shy, believe it or not.

Katy: I was about to say that’s quite interesting.

Debbie: Yeah, can’t imagine that now, but you know.

Simon Stones: I’m a natural introvert, and I always have been, but I always remember that, you know, feeling a little bit dick and to not being able to do some of the things that other people or other children used to do, particularly related to physical activity and kind of running and being able to like kind of struggling with that. So I used to go to the hospital every, three to six months, sort of being monitored. And it was when I was about seven, between seven and eight, I used to have lots of tonsillitis, like six, seven plus times a year. And I was acting on antibiotics. And there was a time when I had tonsillitis and it just seemed to do something to my body. It triggered something to the point where…all of my joints, all of a sudden became inflamed. I was unable to brush my teeth to get out of bed. Like I can remember my dad had to physically lift me out of bed. My knee swelled up to the size of a football. So at this point I’ve got a new consultant who I absolutely adored growing up, who was amazing. She sort of teed me and then she’s like, we’re gonna have to, you know, take this fluid off the joints. We’re gonna have to do steroid injections. And this is when I heard the name polyarticular JIA, which means typically three or more joints affected by arthritis. And this is when I had the steroid injections and would have sort of repeated steroid treatment to try and dampen the inflammation and transitioned onto…

treatment to try and manage the systemic effects. And this is really when it all kind of kicked off and that sort of long term, longer term impacts of looking different, feeling different, not being able to do what all of the other children, young people were doing at the sort of that age and, you know, seven to eight. And that went on for a number of years where I was quite poorly controlled with my condition, partly because of the treatment. I was one of those people who did not respond well so went from having liquid suspension, which would make me physically sick, to having tablets, because they thought that might help. I developed a phobia of tablets at that point. I can’t even tell you how bad it got. Anything that was yellow, I couldn’t touch, I couldn’t look at, and it triggered anticipatory nausea and vomiting.

Katy: Wow!

Debbie: It can cause that anxiety that people unless you’ve gone through it, people just don’t realise at all.

Simon Stones: No, no, I can remember sitting at the breakfast table with my mum dad till three in the morning and it was always on Saturday night so like weekends were ruined completely and trying to get me to take this tablet and I’d kind of like touch it and then like back off and I’d literally be sweating, dripping with sweat because of how anxious it made me. My dad threatened to send me to the naughty children’s home which I’ve not forgiven him for.

Debbie: I assume you didn’t go.

Katy: How did your parents cope with all of this in terms of, because obviously if your mum also had multiple conditions, she’s got to look after herself as well as you. How did all that kind of work in terms of managing appointments and all the different tests that everybody’s got to have?

Simon Stones: I mean, it was just chaos. know, my mum had to retire because of ill health. My dad also had angina, so they were kind of retired early on. And I remember my mum saying, you know, she thought she was doing, there was no support at all for my parents, for me. I mean, absolutely none whatsoever. And my mum thought she was doing the best. You know, he’s got this condition, he needs this treatment, he doesn’t want to take it. So…You know, afterwards, when we went to injections and it was still having the same issues and it was clearly, I just wasn’t tolerating the treatment. And my mum felt really guilty for trying to force that on me, but she thought she was doing the right thing. As an adult, I can totally see that as a child, I was just like, stop trying to poison me. I didn’t want to take anything. I just wanted to be healthy and normal. And I think that’s something which, you know, especially when you’re a child, you don’t…fully understand and appreciate why you need to take this treatment, what other options are available. You don’t just get given this and are expected to take it. So actually, in that stage, I remember saying to the doctor, I would sooner be in a wheelchair and unable to walk rather than take that thing. That was how bad it was.

Katy: Wow. Yeah.

Debbie: Yeah. Yeah.

Simon Stones: Not realizing the full consequences of poorly controlled disease. But that was worse than the arthritis. We should look at the condition and the treatments and how we manage that to make sure people have a good quality life overall.

Debbie: I completely agree. My daughter went through exactly the same and considering I was on that medication as well and as hard as it is, I knew it was benefiting them. But she threatened to run away, it was just awful. But you are just stuck because you’re trying to do what’s best for them. But then putting them that in that situation, that as you say, that’s not a quality of life for them. And it kind of sort of strained our relationship a little bit.

Simon Stones: And some people it works great and I think that, you know, it works great

Debbie: It does.

Simon Stones: and they have no issues. Some people don’t. This is the whole point, you know, we’re all different, our bodies are all different. And I was one of those people who just didn’t tolerate it, but know so many who did. But it did strain the relationship in a little way because I was always that resentful of why are you trying to do this to me? Because I would literally take it and then have nausea and vomiting in, literally, the days. We used to take it in the week. So I’d like not be in school on a Thursday, Friday because it was that bad. and then we moved it to weekends. Like weekends were completely ruined. probably the most embarrassing examples I’d had when I’d had it in the week, I was in year four and I can, picture it now. And I just got this sudden, my God, I’m going to be sick. I didn’t make it to the toilet in time. I projectile that cross the classroom, including across some other pupils.

Katy: I mean, stories like that, I know that would have been awful at the time, but stories like that are kind of, it really brings it to life though as well.

Simon Stones: Just wanted the ground to swallow me up. I was like my god like it was just horrendous

Katy: My son’s in year four at the moment, so I know what the children could be like as well. And school life?

Simon Stones: I mean, I feel like I was really lucky with my primary school. It was kind of the close-knit community, a really good head teacher who understood. remember we had meetings with them and they said, we’ll do what we need to do to make it work for you. So they never used to force me, for example, it was always the difficulty. it’s like, you don’t need to get changed. You can put on some comfortable shoes that I may be not the plimsols because I have zero support.

Katy: Yes.

Simon Stones: And they used to try and encourage me to do things where I was able to do so, especially more of the gentler sports. But what was really nice was OK when I was really struggling and there was a period when I was sort of not being able to walk around very much, I was using crutches. My year five, sixth teacher, who’s now the head teacher of that school, he was like, OK, knew my, I used to love photography and still do. So, what you did at the class photography camera, as I write, okay, we want you to like document different aspects of school life during like PE activities or during, you know, in that time to do different things or to help. was always kind of what I know it was and doing things like

Katy: Wow. That’s such a good way of doing it because you’re still involved but you’re doing something that you enjoy.

Simon Stones: Absolutely like, you know, the library, like supporting the library or doing laminating for the displays and stuff. They would give me things to do, which was great because it was kind of doing something different. It was with some other people as well. And I really enjoyed that. So, they were they were amazing as a primary school. You know, there’s always a chair at the side of the assembly that they to mainly sit on the floor cross-legged. You know what? If you could say they did everything they they did everything that they could do. And there’s kind of like no questions. We went in discussed it and that was, I think that was great. High school was a little bit different but again still pretty supportive once things were in place but I remember our initial meetings in year seven where it was like actually Simon would be better off at a different school where there’s a lift and you don’t need to go up and down the floors because I mean it was it was kind of one of the old tower blocks where there’s like four floors no lift whatsoever. They were trying to move me to another school which was further away, not the school that I wanted to go to where I wouldn’t be with any of my friends. My mum was very much, no, he’s at this school, you need to accommodate for him. And they did. And sort of as I grew up, it became easier to advocate for myself. But I mean, at year seven, I absolutely did no advocating for myself and whatsoever. And would just put up with it. would even drag myself up the stairs just to not appear different, which is…most kids do anyway.

Debbie: Yeah. I did the same, to be fair. My secondary school I’ve have blocked my school years out because I had literally no support whatsoever. I had a school with no lift either. But looking back and obviously your mum was amazing and she advocated so much for you. And I think that’s probably now in your DNA because you do so much advocacy. How did you then get into doing all these advocacy things that you do?

Simon Stones: I know it’s weird how life takes you on these journeys and I would not be doing anything what I’m doing now if I hadn’t had my diagnosis. So, despite all of the pain and the frustration and everything over the years, I always try to think, know, there people worse off than me. There’s always something you can take out of your condition, and we’ve got one chance at life, we’ve got to make the most of it regardless of what’s thrown. And that was my mum’s vision and ethos and that’s certainly sort of come to me. But no, it’s going back to about when I was 18. So, I never really spoken to another young person with arthritis. I’ve never been on any kind of social, know, all of the amazing things from the charities in the UK do. I’d never had access to those. And it was kind of pre-internet social media. I think at this point I’d had Facebook for like a couple of years but wasn’t really engaged in it, the peer support or whatever. And I’d gone back and said, just transition to adults, which was an interesting experience because you kind of have the transition phase, but it was more of the, okay, we’re moving over. and I still kind of love my paediatric team. I knew the secretary as you do, like on first name terms, and then like family really. And then you go to adults and it was, you know, the hospital was attached next door and said okay it should be fine and as part of this though they decided which I was a really nice idea to bring, there’s a few of us who just transitioned over and they thought it would be nice to bring us together with some of the younger children to talk about what we’re doing now, how we found transition so that was the first time that I was able to speak to other young people it was so nice. So, I’d sit with somebody my age and be like, okay, we have something in common and, you know, just having that understanding that they knew what it was like, not having to explain. And I found that really, really interesting. And I was able to give kind of like, you know, my diagnosis story, here’s what I’m doing. I just started my degree in biomedical sciences and, you know, I was planning to teach at the time. So that was kind of my trajectory. And it was while I was there, my old, paediatric consultant and said there is this group in the UK knew nothing about, I didn’t know nothing about research. They said there’s this group that is called the clinical studies group. It advocates and champions the research agenda in the UK. It’s full of lots of different doctors, physios, OTs and other professionals and has two parents on the group. And they really like to have a young person. They never had a young person before and they wanted to expand what was titled at the time, consumer representatives, which is a horrible term, but basically patient partner, that kind of perspective. So I’m a yes person, still am, I’m trying to get better. And I was like, yeah, yeah, absolutely, why not? And I was interested, you know, I was doing bio-med anyway, and I’ve always been interested in the science. So that too,

Katy: Yeah, so there’s a good link. Yeah.

Simon Stones: This could be beneficial to that, but actually, I’ve always wanted to know that why do these conditions exist? What triggers them? I’ve always been interested. So, I went to that first meeting, and it was in Manchester. It was in 2012. just started uni. Got through the whole pack of information to read beforehand, which was like 250 pages. I think I read every page. So, it’s like, need to be for this meeting. And just sat back and thought, I know absolutely nothing. Like, why am I here? That was my reaction. Like, I don’t think I’m going to be able to stay here because I don’t know any of this stuff. Am I supposed to know what MRNA is and all these different biological terms that are included in the papers? And that first meeting was quite overwhelming, to be honest. But there was a parent partner on the group who kind of took me under her wing and…and just reiterated that we’re not here to know about science. We’re here to bring our perspective, our lived experience perspective. And I didn’t, probably for a couple of years, didn’t fully understand the value of lived experience as expertise. But I sort of threw myself into it and started to see through those opportunities. know, kudos to the researchers who actively tried to get that feedback and be like, we’re really interested in understanding like your perspective. What do you think? Would you take this treatment, or would you do this particular procedure? And that group was really sort of the starting point for all of the other different things that followed, which I couldn’t have guessed at the time, but that was where I met a researcher who was doing the EULAR-PRES transition recommendations and wanted a young person patient partner. So that kind of opened me up to the international work within Europe.

Katy: Okay.

Simon Stones: And that’s where that started. As did another project which included a researcher who wanted to bring me on as a co-applicant on a research project. was 20 at the time. I was a named co-applicant. We actually did the qualitative interviews together.

Katy: That’s amazing.

Simon Stones: That was my first publication. She got me as a co-presenter at a conference, at the Involve conference. I all members involved back in the day, I’m the case in the PPI research in the UK and that person became my PhD supervisor. So, it’s amazing how all these interactions actually lead to the next steps.

Katy: And what would introverted Simon from school think of Simon at 20 presenting at a conference?

Simon Stones: Like, who is he? It would just be, it was just something which was always, you know, it’d always been quite quietly spoken, reflective. And I think having a condition like JIA makes you do that because there’s a lot of time when you’re sat waiting, you’re sat in the hospital bed, and you reflect a lot. my condition certainly channels me to be more academic, to be more reflective, thinking  about consequences and actually how do we make things nice to the people. That was always something that was running through my head. And I just don’t think I have expected what would have happened because of a little bit because of the degree and the research that I’ve done and the training, but primarily because of that lived experience. I would not have known the value. And I think if I had done, I probably would have spoken up sooner to actually say, no, this is important. I’m not bothered about being different. I don’t care about, you know, speaking out and being controversial because actually that brings value and support to other people.

Debbie: Yeah, but I think how you felt originally when you were in that room I think a lot of people feel like that as well. They’re quite daunted, especially when you’re sitting in a whole room with scientists and researchers. But it’s just trying get that across to people to say that your lived experience is more valuable than probably anything else in that room and your voice is needed. How can we help them?

Simon Stones: It’s having the confidence that we need to give people confidence to say your experience is expertise. It is valued. And do not be afraid of speaking up. Say what you’re thinking. And there’s no right or wrong answer. I think that’s the thing, know, with science, there’s also no right or wrong answer, but it’s a bit more clearly defined. Actually, you know, it’s very easy for us to think, especially within the healthcare space, lived experiences, woolly and not detailed enough or not descriptive enough or not representative enough, which is also one of my big bug bearers around having people with lived experience saying that they represent the community. don’t. Nobody represents the community, not even the scientists. And that’s good, right? And that’s why we have different levels of involvement. So, we have, you know, people with less experience who bring those really novel insights about what’s happening on the ground right now. You know, you have people like ourselves who’ve been around a little bit and have more experience in advocacy circles. And we bring a slightly different perspective with our own lived experience, but with also how that fits in with policy and research and education. And then you have the patient organizations who represent that community and see a broader group of people. And then they can bring a different lens and it is all the different lenses that I often say actually by having all of that together you get a really good perspective of what the needs are, what the priorities are of the patients and family community. So we should never put that responsibility onto one or two individuals because that’s not fair. But it is about making research and education for health professionals, making them accountable. That’s what I see it as you know we’re saying okay just stop take a step back you know are these research objectives obviously meeting your priorities as a an academic or as a clinician but actually are these meeting the needs of people living with these conditions and their families and if they’re not okay we need to stop and think what can we do differently how can we involve that so we’re  work that actually delivers impact for patients in the short and longer term.

Katy: And thinking about all the amazing things that you’ve been a part of, what are you most proud of at the moment?

Simon Stones: That is a difficult question. Honestly, I mean, for me, it’s about people. I mean, that is the top and bottom of it. And through what I’ve done, I have met so many amazing people and people who are friends. And that includes people with lived experience, researchers, clinicians, like so many amazing people who I know value as my friends. And I see that especially on the European scale. I was at a conference last week and you know it’s just such a warm welcoming that you are part of something far more bigger than yourself and for me that’s the thing I’m most proud of that we you know we support each other we understand we try and champion each other and we celebrate each other and what’s more stronger than trying to lift up other people who have that shared experience.

Debbie: Yeah, that that is amazing. And you know, you do so much, but how do you balance your work life balance? Because obviously you go traveling a lot as well with your with your partner. But how did you then, you know, when you met him, how did you did you discuss your condition with him and how was he? Because sometimes when we know that trying to talk to prospective partners about, what conditions we have, it can be again quite daunting.

Simon Stones: Yeah, I guess it doesn’t help with me because I mean, if you just do a quick Google search, then my life is plastered over the internet. So that doesn’t help really.

Debbie: That’s very true. Google him, that’s what we

Katy: Yeah, because when we and Debbie met our partners, I don’t think that was quite so easy to do.

Simon Stones: Yeah

Debbie: And I think Google existed when I met my partner put it that way.

Simon Stones: So, you know, it’s and again, that’s because I have been so vocal over the years So I kind of signed up to that But I’m at the point now where I’m like, you know, if people don’t accept like who I am and what I need then Those people are not the right people to be in my life. So I’m very open about that and you know I think as I’ve got older trying to you know. Enjoy the humour relates to the condition far more than I used to do and you know, I make it a bit of lines of it like you know I’m quite happy to be classed as a grandad and it’s quite nice actually, it’s not nice I shouldn’t say that but it’s interesting seeing people my age though start to complain about backache or and I shouldn’t laugh at that but I’m like I’ve had this for years so don’t try and come to sympathy when you didn’t give it to me.

Debbie: I just say is welcome to my world.

Simon Stones: But people then start to realize, my God, this can be really challenging. And just trying to look for the humour in the everyday and being clumsy and dropping things, that’s just who I am. And you just got to put up with it. But it is a good way to see your point about how you juggle everything and fit everything together. I don’t think I had the answer. I wish I did, because maybe I could write a book about it. It’s just my approach now, you know, having had this condition and Crohn’s disease and other conditions over time, like you become grateful for when you’re well. And I hate the term pacing. I try to do it, in the end I’m sorry, like I’m just gonna do it. And if I suffer, but I’ve had a really good time, then so be it.

Katy: Yeah.

Simon Stones: We can always try and, you know. of strategies in place to help manage, but if you’re feeling well and you want to do something, just do it. So that’s kind of been a motto through a number of years.

Katy: Is that why you don’t like the word pacing? Because it’s like, well, just do it because otherwise you might not be able to do it.

Simon Stones: Yeah. I’ve got inbuilt strategies where I try and build in kind of rest or things that I enjoy that downtime like that’s what I class as a pace in aspects, but you know, trying to, for me, it doesn’t work for some people, it really works on that clear plan set days where they don’t do nothing. Sometimes I feel like it actually would help me. And so, need to reflect and then try and include that where I can. But know, people have got to do something that works for them, that gives them the confidence to get through the day, get through the week, whatever. But I strongly believe if you can do it and you can enjoy it, just do it if you feel able to do so. And then I think, you know, I lost my mum seven years ago as well and that was just immediately pre-COVID and then we had COVID. And I think after that I’m…My whole perspective has just changed and it’s like, don’t wait. My mum and dad were the generation where you wait to retirement, and you do things and my mum didn’t get to do some of the things that she wanted to do because she died at age 68. So, it certainly has changed my perspective and my dad’s got dementia now. So you just think, if you have the opportunity to do it, just do it and to hell with the consequences.

Katy: Yeah

Simon Stones: That is my approach and make the most of life but also make sure that you look after yourself as well. And so that is always a constant balance when I work full-time, I feel like I have a full-time advocacy role. I’m lucky enough that my dad, I’ve got a partner, I’ve got my own health conditions. It’s always the last one. The health conditions always fall to last. And I try and think, it shouldn’t be that way, but it is difficult. There’s no way around it, is difficult and it’s just that constant juggling and you just have to prioritise like what’s important to you, how can you make sure that you’re healthy and able to do the things that you want to do and then try to adapt that within your specific circumstances. It works for me at the moment, things may change as well and that’s also the uncertainty that you don’t know if I’m gonna have the flare up or if I’m not gonna be able to do something like…just don’t know, so I was like, well, I can do things, I’m gonna do them, because I’ve had those times I’ve not been able to do them, and I think that gives me the motivation to capitalize on the availability and the reason for good health and the chance to do stuff.

Debbie: It’s been absolutely fascinating talking to you, Simon. Your advocacy and how you looked after your mum and how you look after your dad now. You travel, you have a partner, you do you work full time, you do so much, but it’s great to that you are still doing what you can to really help everyone else with these conditions as well and raise that awareness because it again, these conditions they have lots of misconceptions around them, and the more we talk about them, the more those misconceptions can kind of go away. And actually, it’s this that awareness that it is a chronic fluctuating condition, as you say. Some days we’re good, some days we’re bad, but that’s you know, that’s us and just take us as we am. So, thank you. But how can people get in touch with you? You are on Instagram.

Simon Stones: Always anyone contact me anytime. yeah, Instagram, it probably the easiest. So, it’s Simon r stones on Instagram. But always reach out and I think that’s part of what I love. No, he’s been able to connect people to other projects, other people. So yeah, please do reach out if you have any questions. I just want to say hi.

Katy: Amazing.

Debbie: Please do. So, it was Simon R. Stones on Instagram. And we are also on Instagram and we’re on Facebook, LinkedIn, Blue Sky, and YouTube as well. So please follow us and subscribe. You can actually watch these episodes as well. for the most up-to-date information though, please sign up to our newsletter at inflammatoryarthritis.org. But Simon, thank you again. It’s been absolutely fascinating. You are such a busy, busy man. I don’t know how you fitted the time in, but we’re just so grateful for you and your story. Fascinating. So thank you.

Simon Stones: Thank you as well.

Debbie: And until next week Katy it’s goodbye.

Katy: Goodbye.