RECORDED Tue 07 Jan 2025
SUMMARY KEYWORDS: Juvenile arthritis, chronic pain, mental health, school impact, invisible disease, treatment side effects, delayed diagnosis, pediatric rheumatology, education challenges, teacher awareness, personal learning plans, self-advocacy, systemic issues, policy advocacy, quality of life.
SPEAKERS: Megan Gilmour, Chloe, Melanie, Ruth Colagiuri
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG Telecom Foundation dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need.
Hi, I’m Megan Gilmour, MissingSchool, Co-founder and CEO, and this is Live & Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening.
Melanie joins us in her capacity as the mother of a child with juvenile arthritis, sharing insights and perspectives based on her personal experiences in this role, rather than as a teacher.
Megan Gilmour 01:03
Welcome to our weekly webcast, a place to zero in on the interplay between health and education and to amplify the voices of those supporting school students to navigate their educational journey despite complex health challenges.
And today we have with us Associate Professor Ruth Colagiuri AM. Ruth is a prominent health advocate and academic, recognised in Australia and internationally for her work in health policy and systemic approaches to chronic disease management. In 2019, motivated by her granddaughter’s diagnosis of juvenile arthritis, Ruth co-founded, Juvenile Arthritis Foundation Australia, JAFA, alongside her husband, Professor Stephen Colagiuri AO.
JAFA is the primary organisation representing children with juvenile arthritis and their families in Australia. Alongside Ruth, we welcome her daughter Melanie, a schoolteacher and granddaughter Chloe, who lives with arthritis and related issues.
Welcome Ruth, Melanie and Chloe, we’re so excited to have you on Live & Learn today.
Ruth Colagiuri 02:13
Thank you very much. Megan, it’s lovely to be here. Thank you for inviting us.
Melanie 02:16
Thank you. It’s a pleasure to be here.
Megan Gilmour 02:20
So today we are here to talk about supporting school connections for students with complex medical and mental health conditions. Let’s head into our first question.
Tell us how juvenile arthritis impacts kids and why it’s something every Australian needs to know and care about.
Melanie 02:42
Okay, well, firstly, it’s a hidden disability that affects many kids throughout Australia. It’s much more common than people think, and its daily impact is varied, depending on the type of arthritis people experience, the pain, their pain levels and which joints they have affected, which varies quite a bit.
Most children suffer from chronic pain, which impacts their ability to participate in activities of daily living, school and sports and social activities. And further, many children experience mental health concerns, particularly anxiety as a result.
Also, the other things that impact daily life are things like treatment, medication regimes, all the health professional appointments, the cost and time associated with referrals and appointments and prescriptions, and all those kinds of things associated with that.
And equally, in terms of school, in particular, the time liaising with schools and gaining the right support from school.
I think in terms of daily activities, there’s lots of little things that people don’t really think about. So, if I can give you a few of Chloe’s experiences. When she was younger, she’s got arthritis in her wrist, knees and ankles on both sides. When she was younger, she used to have lots of trouble turning on taps because her wrists were quite weak, you know, opening the toothpaste, being able to wash her own hair, things like that.
Now that she’s older, she still does struggle with things like opening the soy sauce, sushi things, cans of drink. She recently went to a school dance, and everybody was provided a can of drink, and Chloe came home with hers full in her bag because she couldn’t open it, she was too embarrassed to ask anybody else for help.
With her knees and her ankle. She absolutely loves playing sport. She plays soccer but does find that she gets quite a lot of pain as a result after she’s finished and will sometimes come home and not be able to make it up our stairs at home or have to kind of crawl or shuffle around the floor if it’s been a particularly tough match.
So, I think those kinds of things people don’t always think about, and I think also socially, it impacts the things that you can and can’t go and do with your friends. Now that she’s a bit older, her friends go out by themselves, and they go to the movies and then wander around the shops as young, almost teenagers, typically do. And she finds that sometimes she can’t keep up with everybody but also doesn’t want to make a big fuss about it, so just comes home in quite a lot of pain as a result.
Megan Gilmour 05:10
Yes, it’s definitely something every Australian needs to know and care about. And I’m sure as we deepen into these questions and hear more from you, it’ll become more evident just how much this means in a young person’s life.
Ruth Colagiuri 05:26
I actually wanted to add a little bit to that as well Megan on a sort of more, less personal, more global scale, and that is that we – JAFA – commissioned research, which was published in November 2023, of the first study of the individual, personal impact of juvenile arthritis in Australia.
The results showed that 85% of kids experience regular pain, and about 30 – 40% of that is severe pain. They missed quite a lot of school, which we I know we’ll go into later, so we won’t talk too much about that at the moment.
46% reported difficulties with activities of daily living that could be anything from, you know, brushing your hair, or like Chloe, getting tops off bottles, or, you know, using pencils and so forth, to being in wheelchairs and having braces and orthotics and so on and so forth.
77% said it impacted on sports. 68% said it impacted on leisure. There were – in terms of the appointments – going to appointments, Melanie’s mentioned these kids have on average at 25 appointments with healthcare professionals each year, and that will be to about five different types of health professionals.
And the very, very poor quality of life, which was much poorer than comparable diseases. And if Australians don’t care about this disease that actually robs children of their childhood in a way, then they probably would care about the cost to government, because, without taking account of the NDIS or any of those kinds of pensions or supports, the cost of healthcare, direct healthcare to governments, is over $24,000 per year per child, and that is considerably higher than comparable chronic diseases as well. It’s a big impact.
Megan Gilmour 07:32
Yes. Thank you so much for giving those percentages there too. It just puts everything into a really sharp context for us.
I guess many people probably assume things about juvenile arthritis. What’s the million-dollar question you get from parents or loved ones when their child experiences or is diagnosed with juvenile arthritis?
Melanie 08:06
I’m not sure there’s a million-dollar question, but I can tell you the things that we thought when Chloe was first diagnosed, and that was, you know, how much pain will she be in? How will it affect her ability to participate in school, sports, social activities and activities of daily living.
And the big question now is, will it continue into adulthood, and nobody actually knows what will happen. So, what you know that we’ve been told that once she turns 18, there’s a chance it will resolve itself, and there’s a chance that it won’t, and there’s no real evidence or research behind which will happen, so we just have to wait and see.
Ruth Colagiuri 08:43
I think some of the things that, in addition to that, that are raised on our private – we have a public and a private Facebook page for JAFA (the private Facebook page has about 1000 families and more people than families).
And the things that are raised in that, as Melanie mentioned, are side effects are very strong, mental health issues, and missing school, and difficulties accessing services as well, because the pediatric rheumatology workforce is very sparse on the ground.
Megan Gilmour 09:15
Yes, there’s a lot going on there for young people, isn’t there and families alike. And as I said, we’ll, we’ll deepen into that for sure, and I just want to acknowledge too, Chloe for joining us today to support us in talking about this, because it’s so important that we hear from our young people and hear their experiences and know what they feel about this.
I’m hearing that it affects so many areas of life, as well as causing pain, which is when it’s occurring, is all you can think about, really.
What’s the most important thing that you want families to know – JAFA as an organisation, or Melanie or Chloe, when they’re going through this experience.
Melanie 10:18
I think Chloe actually had something that she’d like people to know, regardless of whether they’re going through this experience, that she just like the general public to know first, and then I’ll answer the next part.
Chloe 10:29
Because it’s an invisible disease, people forget that I have arthritis, and they mainly can’t see when I’m sore or when I’m not. And I want them to know that it is real, even if they can’t see it.
Megan Gilmour 10:42
Yeah, so important, so important.
Melanie 10:45
I think adding on to that, that really these children with juvenile arthritis are just amazing. They’re such warriors. They experience more pain and discomfort than we really realise, and they push themselves on a daily basis. And they’re so resilient, determined and inspirational. And that message is often seen on our Facebook page as well, and with families sharing stories about their children’s achievements.
Megan Gilmour 11:08
Yes, indeed. And I guess we can say that collectively, can’t we? But when we hear Chloe share about walking through life and people not understanding what’s going on for her, that must be challenging in many ways.
Ruth Colagiuri 11:35
I think that in terms of, in terms of the juvenile arthritis community, I mean, we’d like people to know more, and we’d like there to be more people, a bigger workforce, particularly nurses, who are very thin on the ground, and are probably the go-to people in a lot of chronic disease areas, as educators and a resource for families managing. That is a big problem.
But one of the biggest problems for juvenile arthritis and for JAFA, is the misconceptions about, you know, that kids don’t get arthritis and that sort of thing. So, we would want the community to know, and health professionals actually, to know that kids do get arthritis. And if we can get that message across, we want them to know it’s not the same as adult arthritis.
And I mean, I’ve got arthritis, but I’m an old woman. I’ve got knobbly fingers sort of thing. I’m supposed to get arthritis, but children aren’t supposed to get arthritis. And about how painful it is, as Chloe said, it’s invisible. It’s also highly unpredictable, which I think is one of the things that leads to people thinking the child might be putting it on, because one day they’re okay, and the next day they’re not.
So, for people who don’t understand, you know, teachers, especially in high school, different teachers, that’s very difficult. So, we just like people to understand the nature of the disease, I guess. And it’s a very difficult concept to convey, and unpredictability is difficult to convey. So, there’s a lot of education needed all around the teachers, and, you know, general community and teachers, but particularly for teachers and health professionals, general professionals.
Megan Gilmour 13:14
And I guess the unpredictable aspect of it is something that really needs to be understood as well, because there’ll be misconceptions around that, or, you know, you like this today, but not tomorrow, or, you know, any of those sorts of assumptions that get thrown into the mix.
Knowing all that you know, what’s your biggest hope for kids with juvenile arthritis and their families and loved ones when navigating juvenile arthritis?
Ruth Colagiuri 13:43
Well, my biggest hope would be for a cure, absolutely, and I’m sure you feel the same about a number of other childhood diseases. A cure, and in lieu of a cure, a means of prevention, and in lieu of that, just better treatments, more understanding community and better ways of ensuring that these children can live their best possible lives. So, you know, ways of managing, reducing pain and disability across the life course.
Megan Gilmour 14:19
Yes, Melanie and Chloe, do you have anything to add to that biggest hope question?
Melanie 14:26
What would you like? What do you always say that you would like when we have to go and see people, if you have to keep going to see people. how do you want it to work?
Chloe 14:31
Oh, for one place to do all the appointments so I don’t miss out on school or holidays.
Melanie 14:38
Yes. Chloe’s greatest hope is to have one place to see everybody at the same time, so that we don’t run around a lot, and also so that we can see all the right people. There are some people that we probably could benefit from seeing, but don’t get to see.
Megan Gilmour 14:51
Yes, I think that’s a great ambition in the short term, isn’t it?
Ruth Colagiuri 14:55
I remember taking Chloe – I think she was going back the following week for an eye check, but I took her to see her pediatric rheumatologist because Melanie couldn’t go. We waited for ages and ages and ages. And I can’t remember how old Chloe was, maybe about eight or so at the time. The whole thing took about five hours or something and we don’t live very far from the hospital.
Megan Gilmour 15:15
Yes
Ruth Colagiuri 15:16
And Chloe was totally fed up with it and said that this was a terrible waste of perfectly good playtime. And I thought well that’s a consumer perspective, and it should be fed back to the hospital!
Megan Gilmour 15:26
Absolutely,
Ruth Colagiuri 15:27
It’s just as important as any adult perspective. And it’s very true – you’ve only so much play time you don’t want to waste it on appointments.
Megan Gilmour 15:34
Exactly! And user experience is everything, isn’t it? Having lived in a hospital for, I don’t know, 18 months straight, I could tell everybody in that hospital the way the hospital worked, because I was using every single part of it, whereas any individual staff member, people who worked in it weren’t even aware of.
So, I think this feedback loop into health systems is really critical for kids. Because, as you said, it’s not just that the illness or disease isn’t the same for adults and kids, but life isn’t the same for adults and kids as well.
Ruth Colagiuri 16:17
Exactly. Children aren’t just little adults. There’s a whole lot of things going on with their growth and their brains and bodies and their physiology and all sorts of different things.
Megan Gilmour 16:28
Yes, and so this question is a little bit back to front. It was meant to be earlier, but I’d love to know what brought you into the world of juvenile arthritis. You’ve told us through your bio, and we know because we’re listening to these three generations.
But I guess what I want to check on is, were any of you involved in juvenile arthritis? Was it in your family? Or was there any background of it, or you were just sort of thrust into it?
Ruth Colagiuri 17:04
No, no family background, and I have to say, having worked in health all my life, and Stephen – my partner in life and crime, and Chloe’s Granddad is, is a diabetes specialist, and so, I mean, he sure knew far more about juvenile arthritis than I did.
I knew it was painful, and I knew it wasn’t a nice disease, but I don’t think I realised how serious it was and quite how painful it was, until Chloe was diagnosed, and I started checking up about it.
But the reason that we got in, I mean, Chloe and Melanie had no choice, I guess we did have a choice. But we expected the services for juvenile arthritis to be similar to the services for diabetes in children, because the prevalence is the same.
And so, you know, and that’s the same as epilepsy and so forth, these common and serious chronic childhood diseases, and we expected there to be plenty of pediatric rheumatologists and centers – like there are diabetes centers for children’s hospitals with dieticians and podiatrists and doctors and nurses and educators and dietitians and so on so on so forth, and that’s what we expected.
And we were horrified when we saw that none of those things were there. And in fact, the total pediatric rheumatology, and I’m talking about the doctors only at this stage, were about 18 or 20 of them in the whole country, and that’s compared with about 25 or 30 pediatric endocrinologists in New South Wales alone.
So, nobody knows how this came to be this way. Stephen and I were peripherally involved in the beginnings of the Juvenile Diabetes Research Foundation, which is a fantastic organisation, 40 years ago, and we looked at each other and said, ‘Well, this is like juvenile diabetes was 40 years ago’, and it was and it’s still, it’s moving.
I mean, we’re thankful that the federal government has been listening to our advocacy and, you know, starting to fund some programs and research and so forth, but it’s just been totally left behind by more than a generation, and I don’t think politicians or health authorities do that on purpose. Nobody really wants children to suffer, but it just kind of fell into a hole in the ground.
And so, we’re not we’re not digging because we’re in a hole in the ground, we’re digging to get it out of the hole in the ground. So that’s become a sort of almost obsession, actually, to bring it up to an equitable level of resourcing and services to those diseases so those kids have a chance of having as full and happy and healthy life as possible.
Megan Gilmour 19:55
Yes, and we just want to acknowledge your work, all of you, because you’re all in this together in a way that. But without your knowledge, or background knowledge, as well, like your professional life prior to this, to be able to bring that perspective to it and say, why, when the prevalence rates are the same, is this issue not getting any attention?
And it also just shows the way large scale systemic problems work or don’t work, is that even the people in the system can’t do anything about it or can’t see it in the way that somebody coming in can.
Ruth Colagiuri 20:50
Yes. I think it’s sort of just the myth that it’s rare, and I’m sure this happens in other diseases as well, but it’s not a rare disease, it’s a very common disease. People are astounded on hearing it’s the same prevalence as those other diseases.
Megan Gilmour 21:00
Yes,
Ruth Colagiuri 21:01
I don’t really like to compare diseases, because I think those the children with those other diseases, other serious, chronic childhood conditions, you know, they need as much help as they can get, and we’re not saying anything that they shouldn’t be having that.
We’re just saying that juvenile arthritis should also be having that level of investment and care, because we want our children to grow, and children are our future. And so, we want children to be nurtured and grow and meet their full potential. And that’s a sort of humanitarian thing, I suppose, in a way.
Megan Gilmour 21:40
And not to suffer.
Ruth Colagiuri 21:41
Yes, and it’s also in the economic interests of the country as well to have a healthy workforce.
Megan Gilmour 21:47
So, yes, yes. So, thank you so much for the work that you do and for bringing probably at a time in your life where you were looking at winding down.
Ruth Colagiuri 21:59
Yes, actually!
Megan Gilmour 22:01
I just love it. It’s such a powerful testament to not only love of a grandchild, but love of children more broadly, and also attaching in your capacity to helping so many other children. And Melanie, acknowledging you as a mum in this as well.
Ruth Colagiuri 22:28
Melanie does her bit helping with things, and so does Chloe. We’ve got a fantastic community and a fantastic lot of advisors, and pro-bono advisors helping us actually. We’re very lucky, very fortunate, and friends like MissingSchool!
Megan Gilmour 22:41
Yes, definitely friends! You mentioned some of the common or perhaps frustrating misconceptions. Are there any others you want to mention here?
Melanie 22:57
Chloe’s got one she’d like to add.
Chloe 23:03
Sometimes people assuming I’m using my arthritis as an excuse to get out of doing things I don’t want to, rather than the fact that I’m actually sore.
Melanie 23:12
Or in pain and can’t do them.
Chloe 23:13
Yes.
Megan Gilmour 23:14
Chloe, that’s really upsetting and frustrating just to hear, just to hear that, and I do a lot of these calls, and I just want to let you know that that happens to other kids too, in other situations who have invisible illnesses as well, that that is a very common thing that we hear. So, you’re not alone, but that doesn’t make it any better.
Melanie 23:44
And I think, in fact, in relation to schools, it’s a common issue in schools, both from a teacher’s perspective and from a parent’s perspective, when you have casual teachers in particular that don’t know the kids so well, and think maybe they’re just trying to get out of something. Or equally, Chloe just started high school last year, in high school, when you have many different teachers who don’t get to know you as well, that that unfortunately becomes, from time to time, a common occurrence,
Because of the fact that it’s an invisible disease, people don’t know how you feel or what level of pain you’re experiencing, and also because it’s unpredictable, and you have flare ups and you experience more pain on different days, and can and can’t do things, that one day you’ll be able to do something, and the next day you can’t do the same thing. People therefore assume that that’s because you’re not wanting to, not because you can’t do it.
Megan Gilmour 24:35
Yes, and how do you get around that? Chloe, if you want to answer that question.
Melanie 24:44
Yes, and how do you get around that? Chloe, if you want to answer that question.
Chloe 24:46
No, I just deal with the pain.
Melanie 24:48
She just currently deals with the pain and still does it – we’re trying to work on that one.
Megan Gilmour 24:54
Yes… that’s….I hope that’s something that changes.
Ruth Colagiuri 24:59
Yes, let’s hope so. I’ll just add to that, that we, JAFA just started doing kids round tables, young people’s round tables, really, with proper name, I always call them kids round tables.
We had one child who was about maybe 13 or so, on the last one we did, which was an online one. We were talking about these really irritating things people do and say. And she said that somebody told her – I don’t know whether it was a teacher or just – anyway, some adult told her – that she should just push through the pain!
And she said, what they don’t realise is just, by the time I’ve got out of bed, I’ve already pushed through pain, I’ve been pushing through pain to just get out of bed.
Because it’s worse for kids than most kids in the morning, especially when it’s cold, but takes a while to get going, and I think Chloe will vouch for the fact that in the wintertime, particularly, sometimes she has to have a hot bath or sit in front of a heater to kind of unravel, and it’s really difficult to get to school on time. So, it’s a pretty cruel sort of, I don’t know, insensitive thing to say to a child, really.
Megan Gilmour 26:04
And could that cause more, you know, by pushing through, can that cause more joint issues and things like that as well?
Ruth Colagiuri 26:14
Well, I don’t think it’s advisable to push through when the joints inflame, then it’s endangered. So, I don’t think that you’re really meant to push through the pain in that regard. You’re certainly meant to exercise as much as you can, whatever condition you’re in, yes,
Megan Gilmour 26:31
Yes. So, in terms of misconceptions, we’ve got things that you’ve said there, which is the fact that people assume that children wouldn’t have arthritis. That’s a big one.
And then that you might be making it up because, or making your pain up, whatever, because you’re trying to get out of things, that’s another big one there, and that obviously has a big impact on families as well as the children as well. So, I imagine, as a mum trying to do those negotiations, it’s not, it requires a large amount of diplomacy, and everything else.
Melanie 27:16
It does, yes, absolutely, and it’s frustrating when you have a child that you know pushes through all the time, and like mum was saying, is often quite sore. You know, particularly in winter, when you’ve got experience a lot of there’s a lot of stiffness and pain in the mornings, when children wake up, and particularly in the winter and when your arthritis is active, or you’ve got a flare up.
And like mum was saying, once you’ve already pushed through all of that to get to school and get there and be off doing things, it’s very frustrating to hear that people are sort of dismissing your child’s feelings, or what they’re saying to them, particularly in the case of people like Chloe, who don’t usually advocate for themselves because they don’t want to be different and just want to go along with what they’re meant to do.
It’s very frustrating that when she gets up the courage to do that, it gets dismissed. It doesn’t always, but on the occasions that it does, it is a frustrating thing to happen.
Megan Gilmour 28:10
Yes, and I guess just practicing things over and over, to say and to know how to respond, I think even it’s really hard, Chloe, even for an adult in a work situation, to navigate that, let alone, in your circumstances, and it must be frustrating when you really want to do things and you’re not able to do them, that that you’re having that added layer to that conversation.
Ruth, how many Australian children and youth are living with juvenile arthritis right now.
Ruth Colagiuri 28:47
So, the estimate from the Australian Institute of Health and Welfare is up to 30,000 nought to 24-year-olds. Within the diagnosis of juvenile arthritis in nought to 16 yr olds, we think in that age group there are up to 10,000 children.
It’s all secondary data. But JAFA, with the pediatric rheumatology group and another bio-banking academic group has launched a juvenile arthritis registry, so we should be able to tell you more accurately in a few years. And that now has, after a year, has 500 registrants, I think. We’re working on boosting that up.
But it’s quite a significant disease, as childhood diseases go in terms of prevalence and incidence. But I mean, this is just another example of the lack of attention to it, in that there’s been no registry, there’s been no epidemiological studies on this.
And so, it’s an estimate, as good an estimate as you can get. So, we sort of started saying it’s closer to 10,000.
Megan Gilmour 30:04
Yes, and that lack of data is also one of those problems that keeps the problem going right? Trying to catch up with that.
Ruth Colagiuri 30:14
Exactly yes! Trying to play catch up all the time.
Megan Gilmour 30:22
Yes. Is there a risk of delayed diagnosis, or are most cases of juvenile arthritis picked up easily?
Ruth Colagiuri 30:30
Late diagnosis is a massive problem, and I’m really glad you asked me that, because Chloe was diagnosed quickly because her grandfather’s a doctor, and he didn’t know that it was juvenile arthritis, but he knew enough to know who to refer it to check it out.
So, and that happens, sometimes you hear people talking about their child was diagnosed quickly because there was a local GP that had recently done a short course in rheumatology, and they knew about this.
But, as another example of being left behind, it is very under recognised by generalist health professionals, by primary care professionals, by GPs and pharmacists. And I know they’re not going to do medical treatment, but they’re the ones people on every street corner, and they’re the one’s people often go to for advice if the child has a sore, a sore knee or whatever.
So, our research on this shows that it’s an average of 10 months to diagnosis, and a lot can happen in 10 months. That’s from the time of symptoms till the child is actually diagnosed. That’s corroborated by – there was a study 25 years ago, which, I think, said 11 months. And then the registry that I just mentioned is already showing 9.5 months. So, it’s all around that we so we often say 10 months.
So we were fortunate that the federal government has listened and taken some action on our advocacy about this, because the situation was such – and for some children, we say an average of 10 months – for some children, it can be two years or three years, and they can have permanent eye damage or permanent joint damage at the time of diagnosis, and that’s what most of the complications are now, rather than something that inevitably happens.
So, we’re fortunate the federal government has listened to our advocacy on this, and we’ve been provided with funding in the last two federal budgets for a national program to support health professionals to recognise and diagnose juvenile arthritis early.
And so that’s been rolled out, being rolled out as we speak. It started in April, 1st of April this year, which is a funny day to start actually, April Fool’s Day, but we think that’s a good omen and will continue until 2026. So that is already making a huge difference. And the increase in awareness – and as a result of other things that we’ve done as well – the increase in awareness is actually palpable.
It is still a massive problem. And the pediatric rheumatologists talk about children, you know, maybe a couple of times a year they get somebody who’s been not misdiagnosed, it’s just undiagnosed. And so, the program will expand from focusing on primary care professionals like GPs and pharmacists and primary care nurses.
In its second phase, it will expand to general pediatricians to orthopedic surgeons who often referred these kids and don’t recognise it – you know – do an arthroscopy, painful, expensive tests and so forth – and sports doctors.
I think part of the problem is the very small nature of the pediatric rheumatology workforce, which is fortunately, also growing. But they don’t have time to do anything but see the patients who are at their doorsteps. They don’t have time for training GPs and going out proactively raising awareness among the medical professional and doing seminars and various things that get done.
Megan Gilmour 34:13
The clinical work takes up all the time
Ruth Colagiuri 34:16
Because they’re just staggering under the load of the clinical work.
Ruth Colagiuri 34:20
Yes, but I think it is improving, and people, our JAFA community of parents and older children and young adults tell us they heard this, and they heard that, that we’ve done, or heard somebody talking about juvenile arthritis, and they heard it on the radio and so forth, and so that’s absolutely fantastic, and that’s exactly what we want.
We provide some services for children and families, but our main thrust is on political advocacy, because it’s the only way you’re going to get the policy change and the resourcing and the funding for research and so forth.
Megan Gilmour 34:57
That’s right. It’s been a systematically and systemically invisible issue, and so that’s the only way to get the changes is through the systems.
Ruth Colagiuri 35:07
Yes, that’s right, yes.
Megan Gilmour 35:08
My next question is about complications, and I just want to preface it so that the question is, what kind of complications do kids with juvenile arthritis face?
But I want to sort of throw my own observation in based on that delayed diagnosis, and what Chloe said about the invisible nature of it not being believed at times – is one of the complications that these kids face mental health issues?
We mentioned it earlier. If you’re in pain and you’re not getting a diagnosis, and you’re aching and you can’t do things and this goes on and on, then I imagine that would take a huge toll mentally.
Ruth Colagiuri 36:04
Yes. The survey that I mentioned before that we did, 53% of the respondents mentioned mental health problem. But I think it’s a lot more widespread than that in terms of how you define a mental health problem. So, there’s a lot of anxiety.
And when you have people – like parents, quoting in the early stages – I had this father telling me that every week we drag our child out from under the bed screaming to give her her injection. And I needed to give Chloe her injection once. And I was a nurse, originally by trade, before I went into public health and health education and so forth, and I worked in intensive care and outpatient departments.
So, I’ve given a lot of injections. I ended up in tears. It’s not a nice thing to have to do to your child, and an awful thing for a child to have to put up with.
So, and then you take that, the being different, the, you know, being excited about your friend’s birthday party and getting up on that morning and being too sick and sore to go to the party, or struggling to go to the party, and then having to sit in this corner because you can’t join in the games.
Being socially marginalised at school and, you know, in the playground and at sport, you’d be mad if you didn’t have a mental health problem from that, there’d be something wrong with you, really, I think.
So, you can’t expect people to be normal about it, invasive procedures, you know, blood taking all that stuff.
Megan Gilmour 37:32
Yeah, it’s, there’s, there’s a lot and family stress as well. Thrown in to the mix
Ruth Colagiuri 37:36
Absolutely, yes, a big impact on families.
Megan Gilmour 37:40
Yes. and also, you mentioned as complications, that joint damage and eye damage are the main complications, especially from a delayed diagnosis. And that’s going to just compound everything.
Ruth Colagiuri 37:54
Yes, and, I mean, there are a number of different sub – it’s quite a complex disease – there are a number of different subtypes of juvenile arthritis.
So, it can affect the joints, which is the most commonly thought about one. And in addition, it can affect the eyes, and it could cause blindness if that’s not treated. And I preface this with saying that Chloe has the eye checks, and she’s fine. It hasn’t affected her eyes. They all have regular eye checks all the time.
And so, joints and eyes, and some types of juvenile arthritis affects the skin. So, there’s a psoriatic – psoriasis of the skin. It can affect the internal organs, and kids get rashes and temperatures and that’s a quite unpleasant form of it.
So, there are a whole range of complications that can affect one joint or many joints, it can affect jaws and shoulders. So, there’s a range of different complications. As Melanie said earlier, depending on which joints and how many joints, and then what else may be involved.
But having said that, we have reached a stage where in the last 15 to 20 years, with the introduction of these medications for biologic medications that work in slightly different ways, but they all kind of modulate the immune response, which is the problem, and attacks the joints and eyes and whatever else.
And so, before that, a diagnosis of juvenile arthritis was really a sentence to disability, to life with disability, and that’s no longer true. If we can get kids diagnosed early and onto effective treatments early, these biological treatments have already revolutionised the outcomes of juvenile arthritis.
We just have to be sure we get them diagnosed and get them onto the right treatment, and also having those non-medical treatments like physiotherapy and occupational therapy. And Chloe mentioned her hands before, so she’s got about half the strength in her hands.
She might be going to mention that now, actually, I might be encroaching on Chloe’s response to this. Yes, I think, I think Chloe or Melanie might have something to say about this from a personal perspective as well.
Melanie 40:03
I think also, not about complications, but also about side effects from medications. And what we’ve experienced more Chloe is having the eye checks and is lucky not to have any problems in that area.
But she has experienced side effects from all the medications that she’s taken. And her first lot of medication caused nausea, loss of appetite, mouths ulcers, which was quite unpleasant, and so they changed her to a different – to injections, which, as mum was saying, nobody liked those did they? Chloe once counted how many injections she had. How many was it a year – do you remember?
Chloe 40:36
104 a year?
Melanie 40:39
Yes, and they were not pleasant. And there was a lot of distress in our household around having those twice weekly injections, plus the blood test.
Current medication is an oral tablet, which she is much happier with, but it does have the side effect of light sensitivity, so she gets much more sunburned, which, in summary, is quite a tricky thing to manage, given that she’s already fair skinned.
They’re not, not insurmountable things, but there are things that we have to consider as a result of treatment that she’s having.
Megan Gilmour 40:59
Yes. And there are also things that are important for schools to know too and understand that the side effects of medication are a real aspect of your educational journey.
Melanie 41:00
Yes, absolutely.
Megan Gilmour 41:06
Whether that causes, you know, drowsiness or low energy or, I mean, sometimes even dealing with a serious condition is energy draining, just on its own, just managing through the day.
I just want to swing back around again to the work that JAFA is doing to make sure that we know who needs help, we’re finding out as soon as possible that the best medications are available, that there’s enough people to clinically manage and get those kids diagnosed early and on best treatments.
Because not only the side effects, but just what can happen, as you said, Ruth, a life of disability, and that it doesn’t have to be that way. That’s the main point we want to make here, right? Is doesn’t have to be that way.
Ruth Colagiuri 42:23
Yes, it’s not inevitable, if you can get people diagnosed early, it’s not even likely anymore.
Megan Gilmour 42:29
Um, siblings and peers of kids with juvenile arthritis, how are they impacted? And what should families be across? Are there any tips we want to give here about siblings and peers?
Melanie 42:43
Absolutely, siblings are definitely impacted because, so when Chloe was diagnosed, she was six, so she’s the youngest in our family, so her siblings were roughly almost 10 and almost 12.
So, they were old enough to understand, but there was definitely still a period where they felt a bit sort of neglected and a bit left out because of all the appointments and all the treatment and all the focus on Chloe and they felt like she was being treated a bit differently.
And there were times where she didn’t have to do certain jobs or chores around the house when she was in pain, or when we were trying to get her arthritis under control, which her brother in particular, didn’t always understand. He was the closest in age to her.
Now everyone’s older, that’s not an issue, and they’re incredibly supportive, but I can imagine with younger children, that would be a more significant problem.
Equally, I think what people don’t think about is the types of activities that we can do as a family are often impacted. So, you know, we used to do bush walks and bike riding as families and things like that.
And certainly, when Chloe was first diagnosed, and when her arthritis is active or she’s having a flare up, those things are not possible.
Even holidays such as, you know, going to the snow and going skiing is more complicated and trickier. And even just days out, where you go to the Easter Show or a full day out somewhere, there’s just more things that you need to consider and think about in terms of how you’ll get there and where you park and how much walking is involved in, and simple things that I don’t think people would otherwise think about.
So, I suppose if I was giving advice, it would just be to be honest and open with your other children and have age-appropriate conversations with them about it so that they can understand it. And we tried very hard to actively do other things with our other children and make them feel special, and to avoid any resentment in the family about that.
Megan Gilmour 44:24
Yeah, did the siblings feel any anxiety about Chloe’s situation?
Melanie 44:31
My eldest daughter did. Yes, yes, she’s a bit of a worrier anyway. But yes, definitely.
Megan Gilmour 44:37
Yes, and then that’s a point too, isn’t it that the siblings and peers – we’ll come to that when we get to school now in the next section, but it’s everyone’s journey, in a way, and everybody’s impacted, which I guess, Ruth, when we’re talking about the impacts, we’re not even really fully measuring that are we, including effects on siblings and the way siblings navigate these journeys.
So, all the more reason why it’s important to do the work that JAFA is doing, to do all the good things that we’ve talked about.
So, Ruth, what’s the current population of school aged children with juvenile arthritis? Is it tracked?
Ruth Colagiuri 45:33
Yes, it’s just an estimate, based on the fact that there’s – and you would know much better than I do – I think there’s something like 4 million and something school aged children in Australia at any given moment.
And so based on that, it’s probably about 5,000 or 6,000 school children. But this, again, is just, it’s something that you know ultimately, the registry will be able to answer those sorts of questions. And hopefully, as you know, I’m forever looking for funding for school surveys!
Megan Gilmour 46:00
Yes, we are too, like you!
Ruth Colagiuri 46:04
So, yes, that will all be revealed. So, there’s no such luck that we have anything to track it and so forth.
JAFA is involved with a national data linkage project that’s an MRFF Medical Research Futures Fund grant that’s operating from Sydney University, and it’s just amazing. They can link anything with anything.
So, they can link knee aspirations which is one of the things we haven’t mentioned, that children have joint injections, either fluid taken off their joints, or corticosteroids injected into them to reduce the inflammation for certain reasons.
And so, it can tell you what the children with – it’s all de-identified of course – but what a child whose had three knee aspirations, what that child’s NAPLAN is. So, it can link anything with anything. It’s just amazing. It’s just fantastic.
So that will be shedding some light on, do kids who have more of this surgery – I’m just using this one example because it happens to pop into my head but there are all sorts of other things – how does that impact on their school attendance? Specific reasons.
Megan Gilmour 47:23
Yes, well, there’s some research out of Australia, a few years ago it was released, showing that children who are hospitalised with a chronic condition are three times more likely to fall behind at school, and that’s based on NAPLAN data and how they perform against the national standard or baseline standard.
Ruth Colagiuri 47:46
Well, that makes intuitive sense, but it would be great to have the data to back it up.
Megan Gilmour 47:49
Yes, absolutely, this is what we need. In Australia, there’s no way of knowing right now, how many children miss school due to a chronic condition, and how much school they miss, and what the intersections are – whether there’s a physical disability present as well as, I mean, a visible physical disability, there’s all sorts. It’s a Venn diagram, and we don’t have the data on any of that.
Ruth Colagiuri 48:23
I might be venturing into something that you were maybe about to ask. But we do know from the same survey that I mentioned before, those kids with juvenile arthritis missed 12% of school on average. But the question is, and I know you might say, and Melanie might say that, you know, all kids miss 10%.
But this was the question was actually how much school does your child miss because of their juvenile arthritis. And we don’t really know how – and parents were obviously answering that for younger children – we don’t really know how they interpreted that question.
But we do find that parents – and one of our board members actually was talking about her child having mouth ulcers, which is a common and not very pleasant side effect that Chloe used to get on the same particular medication which she is no longer taking – how they sent her to school anyway, because she misses school because of her juvenile arthritis.
So, I think often people will send their kids to school, the child with juvenile arthritis, to school on a day that if the child didn’t have juvenile arthritis, they might have just let them stay home and rest up a bit, but they’re fearful about the amount of school they missed for appointments and for other things. And when they’re sick and when it’s not a direct juvenile arthritis thing, they send them off – pack them off to school.
I don’t know whether that’s your experience Melanie?
Melanie 50:01
Yes. Well, I think Chloe was going to say something about that first, and then I can add something.
Chloe 50:05
Well, I missed some school when I’m super sore. And last year was my first year of high school, so it was much harder, and I was much more sorer because of all the changing classes, and particularly the stairs at my school.
Melanie 50:22
It’s a very hilly school, isn’t it? Your school.
Chloe 50:25
A lot of stairs
Melanie 50:27
I was looking up actually, Chloe’s attendance last year, and her arthritis is quite well controlled at the moment, but she still did miss 15 days of school, not including days for appointments, simply due to waking up some mornings and just not being able to get up and get there.
Megan Gilmour 50:41
Yes, was, did you say the 15 days included appointments.
Melanie 50:45
No, it didn’t.
Megan Gilmour 50:47
So, yes, 20 days is the threshold in the research. But obviously – there’s a great researcher in Australia who has worked done a lot of studies on school attendance, and I think it’s her point of view that that’s, it’s a rule of thumb, but missing more than 20 doesn’t mean you necessarily – there’s a whole lot of contextual things there in terms of how a child does at school.
Ruth Colagiuri 51:19
I think it’s hard to catch up sometimes. I’ve heard people say that with high school children in particular, because as Melanie said before, they’ve got a different teacher, so they’ve got all different teachers for different subjects, so the teacher doesn’t necessarily know how much they’ve missed, or they’ve missed in other classes.
And I’ve heard people say that the child’s gone back to school after missing a few days and asked the teacher about helping them catch up or something. And the teacher might say, and I’m sure a lot of teachers don’t do this, but some teachers would just say, ‘Oh, we did from page 125 to 132, in the textbook. Just check it out’. It’s not really very helpful.
Megan Gilmour 52:02
So now you can teach yourself! [laughter] This is one of my this is one of my bugbears, just sending worksheets home to kids who are with chronic conditions missing school.
Ruth Colagiuri 52:14
I mean, but it’s an insoluble problem, and I hope it’s not an insoluble problem, but on the other hand, I mean, poor teachers are expected to do an awful lot.
Megan Gilmour 52:22
Absolutely.
Ruth Colagiuri 52:22
And yeah, certainly in terms of the multiplicity of health conditions children can have and the mental health problems that abound, so it’s pretty difficult for them, I guess, to keep up with all this as well.
Megan Gilmour 52:34
Yes. I’m interested in your point of view on this too. [Can we get to] a time and place where the actual condition doesn’t need to be mentioned, but there’s a way to document symptoms and design adjustments based on what the child or the student needs without having to deeply disclose their medical situation, but more symptomology and things like that.
Where there’s a more nationally consistent approach, as we talk about a lot, Ruth, in schools, and where teachers are supported to do this without having to be doctors, without having to be nurses.
I think that’s the place that we need to get to, is where adjustments match symptoms, so we’re not necessarily expecting the teacher to have this deep knowledge of the condition, because they won’t.
But it’s more how do we help the teacher translate that student needs into wellbeing outcomes from anything from academically through just socially, emotionally or any other wellbeing measures.
Ruth Colagiuri 54:02
And look, I’m sure it varies with different diseases, because for our kids, well, I shouldn’t say our kids but children with juvenile arthritis, they’re not necessarily missing big blocks of school – it might be a couple of days a week, which is still significant, and it’s a cumulative thing, obviously, but it’s probably not as hard to go back to school as it would be for a child who misses a month or two months or six months, or it must be horrendously difficult for them to actually go back to school after they’ve missed that at school.
Megan Gilmour 54:32
Yes, and I think there’s the other thing which we at MissingSchool do talk about, but not as often as we do about missed school, because it’s a harder argument to sort of mount and not as easily measured, I suppose, but it’s some of the things that Chloe has shared there.
It sounds to me like there’s not only the variables that can occur in any one individual, but then you’ve got environmental variables like stairs or hills or other things like that, and so then we’re throwing all those things into the mix.
And if you’re in pain, or you’re not diagnosed, or it’s not well managed, then you may be at school, but how much of your schooling are you able to fully participate in, in a holistic way, given what these kids are coping with.
So, I think that’s also an important point to make as well. And keeps bringing us back to the same point, which is why Australians need to know and care about this, and why we need to get all of these important things through that JAFA’s working on.
Are there critical times in in a child’s school life with juvenile arthritis and things families and schools should be prepared for? I’m thinking of transitions or start of school. Is there anything there that stands out for you?
Chloe 56:21
Mainly assessments, because all the assessments are usually on paper, so they’re handwritten, and you can’t type some.
With arthritis in my wrists, it means I have half the normal strength as other kids may have, which makes writing for a long time harder.
Also, I get sore, and it also makes my writing really messy and hard for the marker to read, especially sometimes the marker isn’t always the class teacher, so they don’t always know about it.
Megan Gilmour 56:58
Yeah, that’s a super important one.
Melanie 57:00
Yes, absolutely. And I think definitely when you’re transitioning to high school and when you’re first starting school. I’m not sure that there are other particular times other than probably the HSC, in terms of needing adjustments and support on top of normal assessments.
And whilst you can get adjustments through NESA, it’s often – in New South Wales at least – it’s often a bit of a complicated process and requires some repeated advocacy to get them through. And there are many families that have said to us they’ve had them knocked back and had trouble and had to keep kind of trying.
I think also – Chloe currently has a scribe for assessments now, that her school has put in place, and you know when she goes through the HSC in 2029, hopefully it will be electronic by then, but if it’s still on paper, she will require a scribe, because she will not be able to write for that long. But you don’t really like that process, do you? What don’t you like about it, what’s hard about it?
Chloe 58:01
Because I usually think while I write and think about what I’m going to write next, and I know what I’m talking about. But it’s hard to say it to the writer, plus you have to think about editing if you want to swap out words.
Megan Gilmour 58:17
Yes
Melanie 58:17
So actually, I think in some ways I appreciate the schools trying to do it to be helpful, but in some ways, I think it disadvantages children, because it’s a different way of doing it, and it’s a much slower process, and it changes your thought process.
Megan Gilmour 58:28
Yes, it’s not your process.
Melanie 58:31
Yes, and I think also, sometimes, children are concerned about the person doing it with them, and whether they’re going to look silly, or what they’re going to say is silly, or whether the person thinks, ‘oh, they don’t know what they’re talking about.’ It just adds another layer to it that I think other children don’t have to deal with.
Megan Gilmour 58:46
Yes, and these are the big things that are the little things. Do you know what I mean? I hear that, and even after all of our conversation, I wouldn’t know that unless I heard it from Chloe. I wouldn’t put those things together.
So, I think this is why our students’ voice in this is just going to be more and more important. Chloe, do you have any ideas, like, what would be your ideal with that?
Chloe 59:19
I think just being able to type. Because I would only be able to type just as fast as another student without juvenile arthritis would be able to write.
Ruth Colagiuri 59:28
That is exactly what the OTs say. But one OT – and I’m sure there’s more than one, but one OT in Sydney and another one in Western Australia really have a mission to try and do something about this.
And they say exactly that, that these children who have problems with their fingers or hands or wrists – it is thought that if they’re allowed to use computers, it would advantage them compared with the other children who have to write because it will be faster, and that it’s almost the opposite.
These kids can rarely type as fast as a child without any problem with their hands or wrist or fingers can write.
Megan Gilmour 1:00:09
Yes. I think it’s a classic example, though, where you give that information Ruth about OTs. This is the 20th such call I’ve done, and this sort of thing I hear this every time, and we’re talking about a lot of kids.
So, we need to get to a point, don’t we, where evidence-based approaches are being applied. And if this, then that, here’s the options. And it’s just easy for teachers to see and know those sorts of things are pre-approved by NESA, not on an individual child basis, but as part of a child who has a specific diagnosis. Individuals shouldn’t need to be fighting this out.
Ruth Colagiuri 1:01:06
Well exactly the variations between the different states and territories. So, I’m not sure if this is really true or not. I understand and I think it is true that in Victoria for the final high school exam, the children, the students can use a computer; in New South Wales, you can’t. It’s totally ridiculous. I mean, we’re right next door to each other. It’s bizarre. So, it should be uniform across the country.
Megan Gilmour 1:01:31
Yes, it should be, especially since where we’ve got a nationally based accreditation system. This is what we’re working for. This is the kind of thing that MissingSchool is really working for. And we’re going to drive further and further into this, because it doesn’t need to be this hard.
Melanie 1:01:59
I think circling back to your point about a consistent approach, I think the issue is also that sometimes the supports that children receive in school, NESA will then not allow in the HSC.
So, children have spent all of their high schooling being used to these certain supports and adjustments for exams, and then suddenly they’re taken away at the last minute, because NESA declines those, because everybody has to put in an individual application to receive them.
Megan Gilmour 1:02:28
Right – yes. I think this sits – Ruth, Melanie and Chloe – I think this sits right in the centre of a big system problem, where somebody’s got to go and argue these things out in the way that JAFA’s arguing out diagnosis times and having a registry and those sorts of things.
It’s one of those ones that – individuals can’t change it. Do you know what I mean? It’s just that’s the problem, because it’s that just seems ludicrous, doesn’t it? You’ve been given that adjustment, and then you get to the HSC, and you can’t have it.
Ruth Colagiuri 1:03:11
I think the other issue that follows on from that is that even individual organisations can’t fix it, because for us to go along, for JAFA to go along to say the Federal Education Minister, and say, ‘We want you to do something about this nationally’, or the policy people for the nation and say ‘Can you do something about this’. He would probably say, ‘Well, how many children are we talking about?’
Megan Gilmour 1:03:38
Well, the first thing he’d say is that’s a state territory issue!
Ruth Colagiuri 1:03:41
Well, we’d be talking about 2,000 out of all the all the kids who are doing their HSC you know, so we need to actually get together with you.
It would be great for MissingSchool to lead something like this, but the rest of us who have a stake in this need to get together with you and support you, to back you up, to do it, I think.
Megan Gilmour 1:03:58
Yes, and it’s so important to have these conversations, because a lot of these idiosyncrasies about the system don’t come out unless they’re these one-on-one conversations. It’s like individuals are experiencing them, but they’re not seen systemically.
But also, what you get at a federal level is that that’s something to discuss with states and territories, which, of course, is also quite challenging. But there are ways through that. The Disability Standards for Education as a national regulation is really the thing that ultimately is going to help with this.
So, we’re getting towards the end now, Chloe, did you have anything else you wanted to say on that?
Chloe 1:04:58
No
Megan Gilmour 1:05:00
Thank you so much for what you shared so far by the way, it’s so helpful for us to understand these big things that that other people just would not be able to see unless you shared them with us.
So, as we kind of come to the end now, we’ve talked about a lot, and I just want to pick up on anything that we might not have covered. So, have we covered the biggest challenges or vulnerabilities facing kids with juvenile arthritis at school?
We’ve talked about pain; we’ve talked about needing to have their meds and how those might be having side effects. We’ve talked about not being able to participate in some activities, and we’ve talked about having the issue not seen, which creates a vulnerability on its own. Are there other things we need to pick up?
Melanie 1:06:06
I would just add that, I think, despite whatever support schools have in place, and that does vary from school to school, and is sometimes great and sometimes not great, Chloe’s current school has been fantastic, and have followed the advice from the OT and have made significant changes and liaised with her and I, and consulted with us to create personal learning plans and to get her opinion about how things work and don’t work, and have even gone to the trouble of physically moving the location of her homeroom so that it’s close to a lift. So, they’ve been incredibly supportive and they’re a great example of a school that’s doing all the right things.
Despite that, I think the individual teachers make a huge difference, and teacher awareness and teacher knowledge make a huge difference.
And despite all of those things, with this year, Chloe did have a teacher who clearly hadn’t read her learning plan and had no idea and disadvantaged her in an assessment due to her handwriting, but more importantly, discouraged Chloe’s self-advocacy and her belief in herself and her confidence around this. It was very easily resolved once we raised it again, but it was disappointing that with all that the school had done, that it wasn’t kind of being looked at or considered.
And I think that she had in primary school as well, when she was first diagnosed, an unfortunate experience of a teacher who really had no knowledge about arthritis, which is totally fine, but equally, had no interest in learning anything more about it.
Chloe, as a result, was not able to access some of her pain management strategies, was not able to get any adjustments in the classroom without us having to come in on top of it and sort of have an argument about it, which then resulted in her not wanting to go to school and refusing to go to school.
She’d been a child who had absolutely loved school up until then, and still to this day, I think this is the reason that she doesn’t want to be different, and she doesn’t want to say anything to anybody, so she will still not really speak up with her teachers.
Her teachers are working on way, non-verbal ways that she can do that, where she doesn’t have to do in front of the class, which you really like those ways, don’t you, you’ve always got great ideas that she’s thought of, that she’s shared with her teachers, and they’re all on board. But it is unfortunate, sort of five or six years after having this teacher, she’s still needing to work on her self-advocacy skills around this as a result of the way he managed it.
Megan Gilmour 1:08:34
Yes, you said the way he managed it. Do you think there’s a gender difference?
Melanie 1:08:44
No, no, I don’t think so. I think it was just one of those things. And I think, look, most teachers, I think, are amazing, so I think it’s generally just one of those things.
But I do think that individual teachers have a massive impact regardless of school systems, whether they’re good systems or bad systems, the individual teachers make a huge impact.
Megan Gilmour 1:09:06
Yes, I definitely agree with you on that. And as a mother with a lived experience, my son had a bone marrow transplant, and that’s why MissingSchool exists now through my own journey.
And I noticed, like you mentioned, some of the things there, we also notice as an organisation, if there’s a relief teacher, sometimes things fall over a little bit, and we understand that. It’s kind of harder to comprehend when it is a teacher you’ve been working with for a long time.
Melanie 1:09:40
Yes
Megan Gilmour 1:09:41
But I think you know it’s, I guess, that is inevitable that humans are going to be different and Chloe, that’s where all your amazing practice is going to come in.
And you probably have moved so much further ahead in your own self advocacy than you realise from beginning to now, and I imagine that that’s going to continue, and I’d like to think that your peers will be able to observe that in a positive way too.
Sometimes we don’t want to stand out. And I hear that from lots of kids we deal with here at MissingSchool, kids just want to be normal, and, you know, get to be at school, and don’t necessarily want to be singled out for special treatment, sometimes, whether that’s positive or negative
This is me just giving you the most encouragement I can give you. There’s nothing like self-agency to change your life, not just your condition, but to actually get what you want out of life.
So, this is my plug to everyone who’ll listen. Use your self-agency and grow your self-agency, meaning that you can navigate things, using your own gifts and talents. Because the world needs more people like you, and we really want to celebrate every part of you.
We’ve talked a lot today about your condition, but of course, you’re so much more than that. There’s so much more to who you are than that, and I just want to acknowledge that as well, because we have focused on that.
But I hope to hear more from Ruth about how you’re going and all the other things that you’re doing in your life, as Ruth and I have lots of chats.
Ruth Colagiuri 1:11:53
Well, you might think Chloe is very, very quiet, but she actually won the debating award for her year last year.
Megan Gilmour 1:12:01
I love it, and I reckon it’s because,
Ruth Colagiuri 1:12:03
That she’s had to stand up for herself.
Megan Gilmour 1:12:07
Yes, I reckon it’s because of all of those skills that you’re developing that, you know, sometimes the ones that feel the hardest Chloe are the ones that teach us the most. And we don’t get to choose every situation we’re in, but we sure can do something with it, that’s for sure.
Melanie 1:12:27
You’ve gotten a lot out of this year, haven’t you?
Chloe 1:12:28
Yes
Megan Gilmour 1:12:29
And thank you, Melanie, for sharing your perspectives right at the intersection of being a teacher and a mum in that lived experience. Because on the one hand you have your teacher’s hat on, and on the other hand, you are mum and that’s the most important role you play to your children.
I remember me trying to teach Darcy at home when he was sick, and we both hated it, and he cried. And I just can tell you for sure that I make a terrible teacher [laughter]
Melanie 1:13:06
[Laughter] It’s harder to teach your own children
Megan Gilmour 1:13:08
I just have so much respect for teachers and the work that you do. It’s really one of the most important jobs in the world.
Ruth Colagiuri 1:13:21
Yes, absolutely. Well, what could be more important. Well, first of all, being a parent, I guess and second, being a teacher.
Megan Gilmour 1:13:25
Yes, it is. And I just hope that – because I also want to acknowledge that there’s a lot going on out there at the moment isn’t there, with lots of kids having different health crises and different experiences and teachers, of course, are, it’s a hand in glove thing.
Ruth Colagiuri 1:13:48
Different behavioral crises, I think, in some cases as well.
Megan Gilmour 1:13:51
That’s right, that’s right. So just as we go to close, is there anything else we should be asking about school quality of life for kids with juvenile arthritis?
Ruth Colagiuri 1:14:09
I guess from JAFA’s point of view, as an organisation, I think we’ve covered, at least superficially, probably everything.
And with children with other diseases, I think it’s even more so than juvenile arthritis, on what I’m going to say now, because of, as I mentioned, that kids with juvenile arthritis don’t often have long periods of time off, but that going back to school after you’ve had some time off I think is critical, and you must hear that from everybody in your own experience with your son must do horrendous when he was off school for a long time. So, I think that’s really critical.
And I think just being able to get the evidence that actually helps to unravel and undo and get rid of the – what I see as – both unconscious and active discrimination that does go on in schools. And I’m not so much talking only about teachers, but about the state-based education organisations, authorities and so forth.
I think some of it is a bit harsh actually, in terms of not allowing accommodations that should be allowed. And I’m aware that they’re inundated with people who don’t need accommodations, who are actually trying to get them. But you know, there should be a better way of doing this, as we said before.
Megan Gilmour 1:15:34
Yes, and hopefully we are moving things along in this respect. And the global and national school attendance crisis is really shining a light on the way school models work and don’t work for people, and also with a lot of teachers leaving the profession as well.
We know that a lot of it has to do with the way schools operate, and schools, as you say, are beholden to the education systems that run them. So, there’s much work to do, but I think there is progress, and we’re at a point in time where we can, together push that along further.
Ruth Colagiuri 1:16:26
You’re doing an absolutely, I mean, MissingSchool is doing an absolutely amazing job on this. You’ve done such wonderful, innovative and clever things. And I just really wish you well with that, because you already made a huge difference, and you’re continuing to make a huge difference in bringing this to light and actually providing solutions.
So, it’s not just talking about the problem, and you’re not just talking about the problem, you’re actually providing solutions, which is fantastic.
Megan Gilmour 1:16:54
I want Australia to be best in the world at this, and I believe we can be. It was in the early 1950s when a woman noticed that kids in rural areas were – while they had correspondence schools – it was the social isolation and the disruption to their social connections to do with schooling that was the issue. And that’s how School of the Air started back then.
And so I think we’ve had a history of being able to provide learning from anywhere, and that’s what I hope for children who are missing school, that they can just go in and out of school and continue their school education, whether they’re in hospital, recuperating at home, or at school, and that teachers are supported to do that, that it’s not left up to teachers, that our education department sets that up so that teachers can just teach once.
I was told this time last year that that would be too ambitious to think about. And I say, well, schools did it faster than any other industry. Changed their model overnight during COVID. And it’s not a great example, because everyone says,’ Oh no, COVID, that was terrible’, but it was a pandemic, so we shouldn’t just attribute the challenges with learning from home. We shouldn’t just look at the pandemic era and say that’s all there was.
Because MissingSchool’s data shows so much evidence that once teachers are equipped and children and families are willing that learn from anywhere can happen and can be easy. It doesn’t always work, but it’s better than going without school when you’re not there.
Ruth Colagiuri 1:18:50
Absolutely. Anything’s better than that.
Megan Gilmour 1:18:53
Yes, yes. So, this is the last thing? What’s your call to action for juvenile arthritis in seven words or less?
Ruth Colagiuri 1:19:06
Mine is to reduce pain and disability and optimise children’s potential over their life course.
Megan Gilmour 1:19:16
Yes, amazing. Melanie and Chloe?
Melanie 1:19:20
What’s ours Chloe? To acknowledge the invisible.
Megan Gilmour 1:19:24
Yes, yes. That’s been a big theme, hasn’t it, yes? And we talk about, say, 5,000 kids here, and we think that’s there’s more, but when we add together all of the different conditions-
Ruth Colagiuri 1:19:44
Absolutely
Megan Gilmour 1:19:45
There are so many kids in school and Chloe, you probably won’t know – some of your peers are going through, through things, and you won’t know those things either.
So, I only say that to say, you’re not alone, and again, it might not help with the particular challenges that you have personally, but to think that there are a lot of other kids out there who have health conditions and can live a strong, good life and reach their dreams and potential, is the goal.
So, a big, big shout out to Ruth, Melanie and Chloe. Thank you so much for having this conversation with me today. I feel, as I said, privileged to sit with three generations of amazing women and to be able to learn and benefit from what you know and the work that you’re doing and the way that you live, and what it means for young people in Australia.
I’d like to let everyone know to head on over to www.jafa.org.au [https://www.jafa.org.au] and give generously and provide shout outs among all your friends and family so that we can get more kids who have juvenile arthritis support and to live their strongest life and their best life.
Thank you for joining me today. Ruth, Melanie and Chloe
Ruth Colagiuri 1:21:21
Thank you so much for having us. It was a privilege talking to you.
Megan Gilmour 1:21:24
Thank you
Melanie 1:21:25
Thank you very much for having us
Megan Gilmour 1:21:28
Our pleasure
Megan Gilmour 1:21:32
Thanks everyone for tuning in. Help us turn up the volume so all kids are seen and heard. Follow along, like, share, comment, or leave us a review, because we love hearing from you. And if you want to donate, head to MissingSchool.org.au, because every dollar makes a difference.
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