Episode 50 Can children get rheumatic diseases?

Debbie: Hello and welcome to our 50th episode of Inflammatory with Debbie.

Katy: And Katy

Debbie: Can you believe we’ve done 50 Katy?

Katy: It’s amazing. It’s amazing that people are still listening to us rattle on. Who knew?

Debbie: Thank for everyone listening and watching on YouTube as well. Yeah, getting more YouTube hits as well. we do seem to be getting quite popular, Katy.

Katy: It’s brilliant. It’s absolutely brilliant. Recently I’ve listened to some of our earlier episodes, and you know, not to blow our own trumpet, but I do think we’ve got a lot better.

Debbie: I think we have as well. Yeah, we’re lot more natural and we’re not as nervous as we were. Can you imagine we were actually really nervous beforehand. So yeah, thank you to everyone in our community for listening with us and getting in touch and keeping the conversations going on social media. It’s been amazing. And this year we are really just trying to get awareness out there so much more about the charity and the podcast as well. So, if you do need those resources, please do get in touch and we can send you some and there’ll be a lot more coming out as well this year. So yeah, keep an eye out on the website. What we’re going to be discussing today is today we’re actually recording on Word Day, which is, World Young Rheumatic Diseases Day. People all around the world, it’s not just the UK thing. But really trying to raise awareness that children and young people do get diagnosed with rheumatic diseases. think what’s been shown, common theme with our podcast is that misconception still, because I was looking back and quite a few of our guests who actually had symptoms and were diagnosed, maybe not in their childhood, but really early adulthood.

Katy: Yeah. And actually based on when some of them have said that their symptoms started, they potentially would have been in that child bracket if they’d got diagnosed at that point, but they were diagnosed late teens where you’re classified as an adult or early twenties.

Debbie: Yeah, and I think this is what really needs to be highlighted is that children and young people do get these diseases, the symptoms, the flaring, the pain in the joints, especially if it lasts longer than six weeks, you know, and if their child is more…

Katy: Yeah. And it’s not just growing pains. I keep seeing that sort of, yeah.

Debbie: It’s not. Yeah. I think I was, that’s what my doctors told me, being a shy young child that I was, I never wanted to talk back to a doctor at all. That wasn’t a done thing in that time. And I was like, well, maybe if everyone else should be going through this pain as well then and this swelling, but no one else was, they were still able to do things. And so, it is just trying to get that message across that it is really not growing pains and it’s, you know, if your child is so much more fatigued than usual and if they just can’t do the things that they used to be able to do, but yeah, go speak to the doctors and hopefully, it might well not be but if there is, if you get that diagnosis early, they can start the treatment early, they have so much better outcomes in life.

Katy: And for you with your daughter, Debbie, I was thinking about this earlier. Could you see a difference between when you were diagnosed, and your daughter was diagnosed with the how the medical professional’s kind perceived it and how they looked at the symptoms? Was it different or do you think it was pretty similar?

Debbie: It was different, mainly because I probably had a gut instinct of what was going on and because of my history and that’s where I really did push because I didn’t want my daughter to go through what I did with like saying, oh no, it’s nothing, don’t worry, go away. And it’s like, no, this must be something. But in my area, again, this is very different across the country and how you get children diagnosed. We had to go through a local paediatrician. So, we had to go through our district hospitals to get that referral. And then the paediatrician then looked and they were like, well, probably it could well be JIA. So, we then had to go to a tertiary centre in London. Sometimes you can just get a referral straight from your GP to a tertiary centre, but in our area that doesn’t happen. So, it did take that little bit longer. And I was getting quite worried about, you know, I don’t want it to spread anymore. I don’t want any joint damage for her. But in a way, thankfully, my other, youngest daughter had an appointment with the same tertiary hospital because she had similar symptoms as well. And I was able to get them seen both at that appointment at the same time. So, because again, because of my history and I did push for it, it was different and it was a lot quicker. But I think if my other, youngest hadn’t had that tertiary appointment, it may have been longer. But even the GP was very convinced that this is what she had. And it was just like, right, we need the treatment straight away. So yeah, it was it was tough. And I know people still have to keep going back and back and back to their GP. But there is this new law. can’t remember off the top of my head what law it is. I think after the third time of going, you can ask for a second opinion. And there should be posters.

Katy: Yes, I’ve seen this as well. Yeah.

Debbie: There should be posters up in all GP surgeries about it. And I think it’s just trying to be that you’re not being awkward. but it’s just trying to get your voices heard can be really hard, especially with doctors. We know how hard they work as well. But it’s just trying to get that balance, isn’t it, of making sure that what you’re saying, they’re believing you and going, right, okay, we can do something about it. We’ll try and get you a referral. They’re actually then saying, well, just go back and if it gets worse, then you come back. it’s just, yeah, it is hard,

Katy: Yep.

Debbie: But I was listening back to, you know, it’s our 50th episode today. And last week’s one with Keith was actually probably one of my favourite ones. I know we’ve had lots of guests on them. Hearing different guest stories, absolutely brilliant. They were all been my favourite, but it was really interesting hearing from Keith from a healthcare professional and how he flipped it to say that, you’re the experts. You live with these diseases.

Katy: Yeah.

Debbie: And also, the amount of admin that goes on on your side as well. I think here’s the first one that actually really recognized that we do have so

Katy: I think he’s the first medical professional that I’ve ever spoken to. And sorry if somebody I have spoken to has recognised this but has actually sort of recognised the difficulties and the pressure and the extra admin that these diseases have for a patient. And the fact that we as well need support and help in how to navigate the system, how to navigate, you know, our diaries. I do remember and I don’t know what, the average reading age, don’t quote me on this, it could be slightly wrong. I believe in the UK around that sort of eight or nine years old. So, for a lot of people, even just reading the doctor’s letters is pretty impossible. So anything that can help with that side of things is amazing. And the idea of us actually using AI to benefit our lives and support us with our planning, so to speak, and managing our diseases, then I think that’s great. And actually, something that I hadn’t really, really fully thought about.

Debbie: No, I hadn’t, I actually went back and listened to our word episode that we did last year, episode 11, really good one. Katy interviewed me about parenting a child with JIA and listening back through that and I was like, my gosh, there was so much admin and all they’re trying to.

Katy: Plus, your own admin!

Debbie: Yeah, plus my admin as well. was like, that was a full-time job as itself because she saw so many different healthcare professionals, which was great, to try and get her disease under control. But it was just so much time and had to email the schools. But if I had something that, know,

Katy: Yeah.

Debbie: letter that came through quickly sent it on to the school to say, right, they’re to be having this day off because of this, here’s all the information instead of me having to do that. And then the school said, oh no, you need to fill out a different form for that. You’re like, really? That takes so much time. And then let alone when I had obviously to her sibling to sort out, you know, childcare for her when we had to go into London all the time. And it was, so much, but even I’ve had my rheumatology appointment this week, actually and they’ve changed systems again, which seems bizarre. And my heart goes out to my consultant. She’s lovely. But she was saying that they have so much more admin to do, but it seems to have been a shift, but she can’t understand where it’s sort of come from.

Katy: Really? Because shouldn’t the technology help the admin?

Debbie: That’s what she wants, but it’s not. And also, I then have to have a blood test, but because it’s all, I don’t get the forms anymore, it’s all through their systems. I can’t just turn up and say, right, I need a blood test. This is my doctor’s name. They won’t do that. She needs to press the button in order for it all to go. I had to leave the appointment and had a text message saying I needed a book and a blood test as soon as possible. And the earliest date was end of March.

Katy: Yeah, yeah, yeah. It always takes me about two to three weeks to be able to get a blood test appointment. Whereas previously, yeah, previously they’d print the form off. If I’d not had my blood test recently, they’d send me to it on the same day as I’d had my appointment.

Debbie: Yeah, whereas before I’d take the form and go. Exactly, but they can’t do that anymore. But I did say, well, I had a text message saying if I needed a blood test, you’d let me know. Because we don’t have time to go through every single patient saying, do they need a blood test? Do they not? It’s just like, really?

Katy: Which is why when you’re getting your repeat prescriptions through the private companies for biologics, it’s all very manual because I know I need to get a blood test soon to get my prescription renewed. So, it’s all going to be really manual. I’m going to have to call up the hospital so that they can then put on the system and give me the code to go and get my blood test. Then I think they fax it through. And I know we’ve talked about this loads of times, but it’s, I think they fax it through or they post it with the Royal Mail, which also can have its own issues. And it’s just such a long process. And then you sat there looking at your app for your reordering your prescription going, when’s it going to be approved? It’s so silly.

Debbie: It really is.

Katy: We’ve got all this technology, but none of it talks to each other.

Debbie: I know and I think Keith was saying that as well last week and actually how fragmented it is and actually we take… yeah yeah.

Katy: But even within the NHS, all the different departments are using something different. it’s, I mean, it’s not a problem. It’s not something we can solve, but it’s just so frustrating.

Debbie: It is crazy. It is, think it seems even my rheumatologist has been talking to the people that, set up these systems. They don’t even listen to her. And it’s just like, well, if you don’t listen to them and you’re certainly not going to listen to us as patients, you’re designing something, but surely at the heart of it should be the service users. We say this when we do like co-production work with hospitals and healthcare professionals. If you want changes, ask the people that use it. You know, that’s…that’s common sense. You don’t need AI for that. But it was just but then she was saying so much more has been outsourced, kind of like what you were saying about the biologics as well. But she can’t refer from her consultant to consultant anymore. Because from my back, I’m due a second procedure because I have my first one back in God, it’s coming up to five years. I’ve been on this waiting list for coming up to five years. I’ve just been lost in the system. And she’s saying she now can’t refer.

Katy: Oh wow. Oh my gosh.

Debbie: Me back to this other consultant, it has to go through this outsourcing. And it’s like, but that’s going to take up even more time, more money to do that. And she was as frustrated as I was. I know, every healthcare system around the world is different. And everyone has their own issues. But also, what really gets me is they say the NHS is free. It’s not free. We pay for it through our taxes. It’s just when we go, we don’t pay. And so, we are paying for this, and it just doesn’t.

Katy: We are customers essentially, yeah.

Debbie: Yeah. But no one listens to us about what, what we want and actually how we can work with the healthcare professionals to make it easier for both sides as well. And because she was also saying that she’s getting so much more phone calls and everything like that as well coming through but then there was this whole thing about PIFU. It was patient initiated follow-up. So, if you are flaring, you should be able to get an appointment. But obviously that doesn’t seem to be working either. it is frustrating and I don’t know the answer at all, but it’s just everything that gets added on to us as Keith was saying, it’s just that extra burden. You know, we’re living with something that is unpredictable anyway, and then having to do all of this other stuff is, it is so frustrating.

Katy: Yeah. And it all just feels painful, doesn’t it? Not only the disease, but the metaphorical pain that comes with it.

Debbie: I know, everything. It really does. My heart does go out to healthcare professionals, but also for every patient that’s living with these diseases and for young children and their families as well, because the burden onto families, it is that huge ripple effect.

Katy: Yeah, yeah, because it’s not just the child involved, it’s the siblings, it’s, managing the whole family dynamic how you support the sibling who might be getting left in different places because you’ve got to take one of the children to hospital.

Debbie: Yeah, yeah. And it is really hard I remember having to do that but then I did try to then make sure I then spent quality time with the sibling as well. Even though it wasn’t properly quality time taking a child to hospital, but you do get, but that’s what they see as it’s like when mum’s going off with my sister, that’s time together. I want that time together as well. So, it is not really no.

Katy: Yeah, you wouldn’t want that time together though, really. But obviously a young child doesn’t see it,

Debbie: But they don’t see it as that. But also, you know, one key thing for parents is to make sure that you look after your wellbeing and your mental health you need to be well enough to look after them as well. Otherwise, you just drain yourself and you end up in burnout and just get overwhelmed with everything and it’s not good for your children. It’s easier said than done. I’ve been there and I’ve done it and I know that and it is very hard to turn it around on yourself to go, right, how can I as a parent cope with this?

Katy: Is there much support for parents?

Debbie: I think it’s getting better. When my daughter was diagnosed, all the help actually was for her. And she could have gone to some activities which is great. Obviously, they need that as well because they don’t want to feel alone. There are online groups you can go to as well and I think that’s picking up a lot more.

Katy: Have you met many other adults with JIA like yourself whose children have also been diagnosed?

Debbie: I know two I think there’s probably a lot more out there. But I know that people who have different types of inflammatory arthritis other than JIA and their children do have symptoms and going through sort of diagnosis as well. I think it can run in the family, but obviously JIA is very rare and then it’s just even more rare if or rarer

Katy: Okay

Debbie: for a parent has it as well. Hopefully this is where research will go into as well because obviously for AxSpA there is that gene that they can have the test for to see if whether they have it or not and obviously for different cancers as well. So, there could well be something like that in the future. But what I will mention is I went to the House of Commons the other week. it was with another charity and they had artwork by children living with juvenile idiopathic arthritis. And I met some of these children and oh my gosh, I was just in awe of them. A, their artwork was amazing considering I can’t even draw a stick man. It was just terrible. But it was just so nice to talk to them. And they were so, they seemed to be really empowered by just life and just actually talking about their diseases. But then one girl, she did do a talk and she was like, I’m not going to introduce myself by saying I have this because she’s so much more than that. And I think that was great. So, when I went up to her afterwards, was like, I’m Debbie. I’m founder of, Inflammatory Arthritis UK. And I’m not going to tell you my disease because that is part of me, but I’m so much more than that.

Katy: Yeah.

Debbie: And yeah, these children, they were fantastic. They really were. And I was also then talking to a dad. And he has a really interesting way in how he empowers his child. She’s got J.A. and unfortunately, they had to go through a really, well they spent a lot of money having to go private, et cetera, to get the diagnosis because they just weren’t getting any referrals come through. But he turned around to his daughter and said, right, I want you to go, when you have your appointment, I want you to rate your consultants. And, you know, when people even doing their blood tests, I want you to rate them. How was it? How did it, did it hurt? Could they have done anything better?  And that’s what they do. It’s kind of like it seems like a spreadsheet way of doing it. But actually, and then also, I don’t know if you’ve met many consultants, but they are very competitive. And they then are like, well, if you’re gonna have a blood test, I want to beat this person who did your last blood test, right, so I’m going to be better. And it’s, it’s, it’s just a really interesting way of looking at it. And I was just like, fascinated, actually, in how she was then talking about it in a fun way.

Katy: Did they share the results with them?

Debbie: Yes, but in a really constructive way.

Katy: It’s kind of empowering, but it’s also empowering her to give feedback to the consultants in a, yes, yeah. And then it ensures that they’re getting the best care possible. Oh, I really like that. Maybe we should all start doing it. I don’t know how they’d feel about it. Maybe kids can get away with a little bit more. I don’t know. I think we should too.

Debbie: Yes, and obviously they see more of the multidisciplinary team than we do because I only ever see my consultant once a year. I don’t see anyone else. do you see your nurse? Don’t you?

Katy: Yeah, so I normally see the biologics nurse.

Debbie: Yeah, I don’t even see them. So, it’s just an appointment once a year.

Katy: But in all honesty, I have to say I cannot, I do not have a clue when my next rheumatology appointment is. I normally, yeah, I can’t.

Debbie: but then you can’t see that through your NHS app? See I can now.

Katy: No, no, can only see GP. I mean, it’s probably in my diary somewhere, but.

Debbie: Well, yeah, because that’s what used to happen before it went through the NHS app. It used to have it sent to me and it was in a bit of paper somewhere and I had to go through all my files and whether it then got caught up with my daughter’s files as well, which is like massive bits of paperwork. I think this is where AI just needs to come in and just be a bit more organized for us all.

Katy: Yeah.

Debbie:: But anyway, getting back to that event, it was lovely and it was really, really nice to see young people and really highlighting that children and young people do get rheumatic diseases. They do get inflammatory arthritis.

Katy: Yeah.

Debbie: Awareness is also talking about it as well. And this is what we’re doing on the podcast we are talking about that lived experience and those real stories actually and how it impacts day to day life because not really, no one really does talk about it.

Katy: No, no, no. Because it’s, unless you’re really asked or you’re given a platform like this sort of thing, it’s not something you generally bring up unless there’s a reason like you’re unable to do something that day. And then it’s a negative, then it’s in a negative concept rather than talking about all the things you can do and that you’re more than the disease. So, I really like that.

Debbie: yeah, I do as well. I think, but then it’s also then trying to, as you know, when we had Kat on, you don’t want your friends to see you when you’re struggling. That’s the other thing as well. So, it is very hard to try and get that across.

Katy: Yeah.

Debbie: But you are far more than your disease, and it can take you to places that you would never have gone before. Like these kids were at Palace of Westminster, I think is the technical name. But they were there and they were meeting other people that going through exactly the same thing. And it’s just like sometimes, it’s never ever a good thing, but sometimes you do have to just try and see the silver linings and actually what it brings to you and who you meet and how we can.

Katy: Yeah, what a brilliant experience. Yeah. Yeah. The extra opportunities, and it’s embracing the extra opportunities that may become your way as a result. And using that, for personal development and growth sounds very…

Debbie: Exactly. That sounds very marketing there, Katy. Very business-speaker.

Katy: But you know, but these kids having gone to the House of Parliament presenting, that’s not something that other people in their peer group will be doing. So it’s incredible that they’re doing it.

Debbie: It is and it is just trying to give these kids and I think their families and also the siblings, we can’t, as you say, we can’t forget the siblings in all of this as well. But anyway, next week, we have another guest on. We have Charlie Robards.

Katy: He is an author.

Debbie: He is an author. Yes, he’s written a book. It’s called hitting as for six. And the prophets do go to NASA National Axial Spondyloarthritis Society. That’s always a mouthful to say. Yeah, because he was diagnosed again, very young, in his adulthood. And his story is fascinating. And actually, who he ended up marrying really did help him. was just…

Katy: Yeah. You’ll have to tune in next week to find out more.

Debbie: You will have to tune in. Yes, I won’t do a spoiler alert there. Yes, but now, yeah, absolutely fascinating story. And actually, how sport can really help you.

Katy: Yeah, to build the resilience and I do think his life in sport has really helped him and he’s got some exciting potential news in the summer. Again, listen next week.

Debbie: Yes, indeed yes, but there was also, I don’t know if you’ve seen, ARMA the Arthritis and Musculoskeletal Alliance have just done a policy paper about movement

Katy: Yes, I downloaded it yesterday.

Debbie: and how we need to, how can we try and get kids, like young people, really involved in sports? Because I remember PE and I hated it. And I think that kind of put me off a little bit as well. But it’s showing that sport isn’t PE. You can do what you want.

Katy: Yeah, you can choose what you do. You can choose what you enjoy.

Debbie: Exactly. And if there’s one, you know, if you try one thing and it doesn’t work for you, go try something else. There will be a sport or there will be something that you enjoy, even if it’s just walking and just doing that lot more exercise. but…

Katy: Yeah. And it’s getting out into nature and things like that.

Debbie: Yeah, because it’s so good for all of our MSK health, know, just keeping our bodies moving. and as you say, great for our mental health as well. do listen to Charlie’s episode that will be out next week. That’ll be our 51st episode. Gosh, we’re getting through them, Katy. I know.

Katy: Yeah, Exciting. We are. I’m very excited for our 100th.

Debbie: Yeah, that’ll be at the O2, by the way. We’ll do a live then. But anyway, please do rate and follow the podcast from wherever you get the podcast from. And you can also download so you never miss an episode. Please do sign up to our newsletter. We’re at inflammatoryarthritis.org where you get all the information about the episodes, any news, events, and any research opportunities. And please do follow us on social media. We are on Facebook, Blue Sky, Instagram, and LinkedIn. And until next week, Katy with our 51st episode. I will see you then. Goodbye!

Katy: Goodbye and see you then!

In this special 50th episode, Debbie and Katy celebrate how far the podcast has come while shining a light on an often‑missed reality: children and young people do live with rheumatic and inflammatory diseases. Recorded on World Young Rheumatic Diseases Day, the episode blends lived experience with practical insight, from delayed diagnoses and complex referral pathways to the hidden admin burden families face when navigating paediatric rheumatology and the wider NHS system. They discuss the impact on siblings, the importance of being heard, and how empowering young people can transform their confidence and their experience of illness. Honest, relatable, and thought‑provoking, this episode is a reminder that behind every diagnosis is a whole person and a story worth hearing.

Key Topics:

• WORD Day and raising awareness of paediatric rheumatic diseases
• Misconceptions around childhood joint pain and “growing pains”
• Tertiary centre is a highly specialized hospital providing advanced treatments for complex or rare conditions, typically requiring a referral from primary (i.e. GP) or secondary care (i.e. local hospitals)
• Delayed diagnosis and challenges in paediatric rheumatology pathways
• The hidden admin burden on patients and parents
• Impact on siblings and family life
• Parental wellbeing and avoiding burnout
• Using technology and AI to support disease management
• Empowering young people to speak up in healthcare settings
• Debbie’s visit to the House of Commons and meeting children with JIA
• Encouraging movement and sport for MSK and mental health
• Preview of next week’s guest, author Charlie Robards

Resources Mentioned

• WORD Day – World Young Rheumatic Diseases Day
• ARMA (Arthritis and Musculoskeletal Alliance) – Movement policy paper
• National Axial Spondyloarthritis Society (NASS) – Beneficiary of Charlie Robards’ book
• Previous episodes referenced:
• Episode 11 – Parenting a child with JIA
• Episode with 49 with Dr Keith Grimes

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/