RECORDED Wed 25 Jun 2025
SUMMARY KEYWORDS: Kidney disease, chronic kidney disease, dialysis, kidney transplant, pediatric nurse, school support, mental health, medical interventions, peer support, financial burden, Disability Standards for Education, telepresence robots, modified schooling, sibling impact, kidney health Australia.
SPEAKERS: Roxanne Perry, Megan Gilmour
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.
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 journeys despite complex health challenges.
Today on Live & Learn we have Roxanne Perry. Roxanne is the Kidney Health Manager at Kidney Health Australia, leading clinical projects and programs focused on early detection of chronic kidney disease, education and support for people living with kidney disease.
A pediatric nurse by background, she was nurse unit manager at the renal unit at the Adelaide Women’s and Children’s Hospital from 2001 to 2011 where she focused on educating patients, families and health professionals. Roxanne later held various roles in the dialysis industry until 2023 and completed an MBA during this time.
Welcome Roxanne. We’re excited to have you on Live & Learn today.
Roxanne Perry 01:48
Thanks, Megan. It’s good to be here.
Megan Gilmour 01:51
So today we’re here to talk about supporting school connections for students with complex medical and/or mental health conditions. So, let’s head straight into the first question.
Roxanne, tell us how kidney disease impacts kids and why it’s something every Australian needs to know and care about.
Roxanne Perry 02:14
Sure, so chronic kidney disease is permanent reduction in kidney function that leads to the kidneys not being able to filter the blood and provide all the other things that they do in the body. So, you get an increased fluid and waste build up in your body. So, in kids, this is really uncommon, but there still are over 400 children out there currently that are on dialysis.
So, when you get to the point where kidneys fail completely, you need to have dialysis treatment or a kidney transplant. So, kids with kidney disease face really unique challenges that are different to adults, because it really impacts their life and their development. So, it interrupts growth, interrupts their ability to get education, their peer support and their social skills.
Megan Gilmour 03:08
Well, that certainly is something that every Australian needs to know and care about. And that number 400, that’s for Australia?
Roxanne Perry 03:16
Yes, that’s just for Australia. So, there are quite a few kids out there – that’s under the age of 18, currently as of or as of at the end of 2023, so there could be more. It seems to be – the numbers are about the same.
Megan Gilmour 03:30
Thanks for qualifying that so many people probably assume things about kidney disease. What’s the million-dollar question you get from parents or loved ones when their child is diagnosed with or experiences the effects of kidney disease.
Roxanne Perry 03:45
Yes, so kidney disease doesn’t have any symptoms until you get to that kidney failure stage. So, a lot of people are shocked when they find out their child has kidney disease, because there hasn’t been any, necessarily, any symptoms until they are quite sick. So, if you can get it early, though, it can be managed really well in the early stages. So, finding it early and getting treatment is really key as well.
Megan Gilmour 04:13
That’s really disconcerting to know that there’s not really those symptoms coming forward for a long time, and it could just sort of feel like it happens out of the blue.
Roxanne Perry 04:24
Yes, that’s quite commonly what we see unless, of course, a lot of the – about 35-40% of kids with kidney failure have got urological abnormality, so they might be born with something that’s affected their kidneys. So, for those ones, they do know, and that’s monitored really well, but for the other types of kidney disease, it can come as a bit of a surprise.
Megan Gilmour 04:48
And what do parents ask? Or what’s the biggest question at that moment?
Roxanne Perry 04:55
How do we fix it? Yes, what do we do now?
Megan Gilmour 05:01
Yes, and what’s the most important thing that you want them to know at that moment?
Roxanne Perry 05:06
So, it’s really important with kids with kidney disease that they try and live as normally as they can, depending on their symptoms. So, there are a lot of lot of medical interventions. So, it’s really important to follow the medical advice, medication and all those things, but it is really important that you give your child the opportunity to get some peer support and to socialise with other kids all throughout their disease process. That’s really important.
Megan Gilmour 05:35
Yes, and we’ll get into that in more depth a bit later in our discussion. And knowing all that you know, what’s your biggest hope for kids with kidney disease, their families and loved ones when navigating it?
Roxanne Perry 05:57
I hope that the kids – I think it’s really important for parents and teachers and anyone that’s involved with these kids to find out what the kid is good at and what they like to do, and it’s really important to try and foster that.
So, give them a sense of purpose and achievement. So, some kids will like art, and some kids will like music, and some children will like being active. So, try and find ways that you can really help your child to achieve those things. And they might not be able to play a competitive sport, but they can do some activity like dance or something like that, if there’s some physical things that are still barriers to them doing those things.
So, find out what your child likes to do, and just really focus on that and get them to do it. And for parents and families, get as much support as you possibly can. Keep asking questions, keep advocating. If you get a roadblock, just keep asking, trying to find a way around it, because that’s really important.
Megan Gilmour 06:55
Yes. Great advice for advocates. And also, that very critical element, which is to not see these kids as patients, but as kids.
Roxanne Perry 07:08
Yes, that’s right, yes. And every child, as you know, every child is individual, and everyone has the things that they’re good at, the things that they like, and they’re the things you need to foster in all children, but especially kids with chronic disease.
Megan Gilmour 07:22
Yes, quality of life, and if you’re willing, we’d love to know what brought you into the world of kidney disease.
Roxanne Perry 07:31
Yes, so I had been working in pediatrics for a while, and I really enjoyed working with families and children with chronic diseases, because you get a real connection with them, and you get to go on a journey with them, and you’re able to support them through all the different things that happen to them.
So, it’s that connection and kidneys are really fascinating. They’re such exciting organs. We don’t realise that they do so many things. Not only do they make you produce wee so that’s really exciting in itself. But they also look after your bones. They look after your blood pressure. They control your hormone levels.
So, they have multiple effects on your body. And they really are the forgotten organ. Everyone talks about your heart and your brain, your lungs and all those things that we see here all the time. But the kidneys are in there, working really hard.
And they can actually repair themselves really well. They actually manage themselves well, like, if you get some kidney damage, for some reason, they respond really well, and they can heal themselves and look after themselves. So they are really amazing organs.
Megan Gilmour 08:40
Yes, I love that, that you have this excitement and fascination about kidneys. And obviously that’s had played an important part of why you’re in the work that you’re doing and almost being that advocate for, such a vital organ, absolutely vital, we know this, but you’re right, it’s sort of the quiet organ(s), I suppose.
And I learned something which I didn’t realise. I knew that the liver is often, people often talk about the liver repairing itself, but I wasn’t aware that kidneys have the same characteristic, and that’s super exciting, isn’t it?
Roxanne Perry 09:31
Yes, yes, it’s great. So, for example, with a kidney transplant, sometimes when the kidney goes from one person to the other, they sort of boost it, so they go to sleep some of the little nephrons, but then they can heal themselves, and they can wake up and start producing urine and start working. So yes, it’s, it’s fascinating
Megan Gilmour 09:50
Yes, and spectacular. Yes. I had a front row seat to all vitals when my son went through his medical crisis in 2010 and had a bone marrow transplant, and all of that treatment obviously affects all organs.
But yes, you do tend to come to respect each organ, and it’s critical and vital role, and also just the absolute incredible machinery of the body – and the way that it alerts us to something that’s not right or not going well, sometimes, even before an instrument – a human made instrument can detect. So, yes, thank you so much for that shout out for kidneys.
Roxanne Perry 10:46
That’s right, no problem. Yes, really cool. They’re really cool, kidneys.
Megan Gilmour 10:51
Yes. So, what are the common and perhaps frustrating public misconceptions about kidney failure or kidney disease, and how have you seen this impact families, particularly kids?
Roxanne Perry 11:04
Yes. So probably the biggest thing that we see in children that go to kidney failure and need treatment for that is that a lot of people think that kidney transplant is a cure for kidney disease, and unfortunately, it’s not. It’s just another form of treatment.
So, if you think of kidney transplant as another form of treatment, it still has a whole lot of things that go with it. So, medication has to be taken every day for the rest of your life, and ongoing care, you still have to go to appointments. You can still get complications, and unfortunately, for children with kidney disease, they may need another transplant later on in their lifetime.
So, kidney transplants don’t necessarily always last forever. There are stories that patients have the same kidney for 25-30, years, and we hope that’s for every person that gets a transplant that they get as maximum as they can.
But in reality, the average transplant, it’s around 10 to 15 years. So, if you have a transplant when you’re five or six, then when you get into your 20s or 30s, you may need to go back on dialysis and have another kidney transplant. So that is a really common misconception, that people think that a transplant is a cure.
Megan Gilmour 12:14
Yes, I would put myself in that category of people with a misconception that’s now been corrected. Thank you. And just, also that shout out for life saving opportunity of a transplant, an organ transplant, and also, just as you said that, and I did not realise that it is just another form of treatment. And the person may need to have another transplant at a future time.
But also, importantly, as you point out, that ongoing medication that I guess would include anti-rejection medications in terms of the transplant, but really important to know, and especially for the community, but teachers and people in schools to understand that whilst the celebration of a transplant there and not needing now to go to dialysis at all, or as often, as it previously was, is not the end of the story in terms of how that young person is experiencing their health situation.
Roxanne Perry 13:39
Yes, that’s right. And the transplant, the anti-rejection medication, brings with it a lot of side effects. Most commonly, it’s the increased risk of infection. So that is always a risk as well that if there’s something going around school, it’s really important to let the family of the child with the transplant know that there’s, you know, rotavirus, or there’s a lot of gastro going around, or there is the flu, they have kids with the flu, or whooping cough and all those nasty things. It’s really important that exposure to that is limited.
Megan Gilmour 14:13
Yes, those drugs are immune suppressant drugs to stop that rejection. And obviously it’s having that side effect of making children more susceptible to those risks of communicable diseases in school and going around, and we’ll get into that a little bit more about what that means for school.
Roxanne, how many Australian kids or young people are living with kidney disease right now?
Roxanne Perry 14:48
Yes, so the amount of children in Australia that get kidney failure – we have really good information on that, and it’s around nine children per million. So, it’s it is fairly uncommon. It’s not one of the most common childhood diseases.
Currently in Australia, we know that there are about 400 children who are either on dialysis or have an active kidney transplant. The kids with chronic kidney disease, though, that haven’t reached failure, because the kidney disease comes in a lot of stages, from stage one right through to stage five, and that stage five is when you need renal replacement therapy or dialysis transplant.
There’s no real database of those children or even adults, in fact, in Australia that have those different stages, so we don’t really have a good idea of the numbers of those, but there would be – it would probably be and it’s thousands across Australia that children are being managed for chronic kidney disease.
Megan Gilmour 15:47
That’s really interesting. And is that because there’s no there’s no collection of that data or is it because you only work out that you are at a stage when you’ve reached a certain critical point. I mean, is some of it just that it’s not detected yet, or is it that it’s there and being actively treated? But is it being counted?
Roxanne Perry 16:13
Yes, it’s a little bit of both. So, a lot of early kidney disease is managed in primary care, which is your GP, and so there isn’t – it’s not a reportable disease. So, there’s no Australian data point that people have to put in to say I’ve just diagnosed this patient with kidney disease. So that’s a really a bit of a gap in our knowledge of how much kidney disease we know.
We know the prevalence from the wider population, from the Australian Health Survey for 18 and over, and that is that there’s 2.7 million Australians with kidney disease over 18, but only 2.2 million of them know they’ve got it.
And see that’s the other problem is that, because there’s no symptoms, people can be walking around without knowing they have kidney failure or kidney damage and kidney disease. And it’s the same with children.
Megan Gilmour 17:11
So that’s a bit shocking. So, there’s no registry?
Roxanne Perry 17:16
of chronic kidney disease as such, yes. So, there are some data points. But there isn’t a national registry, but there is a really good registry for once people get onto dialysis, we have fantastic data. And our database in Australia and New Zealand is world renowned to be really, really accurate. So once, once kids are on that registry as having kidney failure, which is stage five, then we keep a really good record of what happens to them from there.
Megan Gilmour 17:46
Yes, it seems logical that a registry of people who are heading towards failure would be helpful! But I’ll just leave that there [laughter]
Roxanne Perry 17:57
Yes, 2.7 million! So, there’s more people walking around kidney disease than there are with diabetes. So, when you think about that, that’s actually quite confounding. Yes, it really, no one thinks about it.
It’s the hidden disease.
Like I said, there’s no symptoms. So, it’s not as though… We know who’s at risk, and we know the people that are more likely to get it. So, people with diabetes, high blood pressure, have family histories, heart disease. People are obese, people who smoke. First Nations people are at a high risk as well.
So, we know that those people need to be checked regularly, and that’s our message at Kidney Health Australia, but yes, there isn’t good data on how many of those people are getting tested and diagnosed until they get to the later stages.
Megan Gilmour 18:39
until crisis point –
Roxanne Perry 18:41
Yes. So, we’re working with that – that’s one of our messages. Kidney Health Australia is trying to work out how we do that. How would that work? What would that look like? Yes, it would have to be a national thing.
Megan Gilmour 18:56
Definitely. And when we’re talking about school, as we’ll get to in a moment, those under 18’s, because of, yes, and I won’t preempt our conversation in a moment, but just because of, as you pointed out at the beginning, the impact that it can have on young people and sort of particular cohort of people with kidney disease, with specific needs.
So, I think you’ve answered this, but let’s ask this question just for completeness, is there a risk of delayed diagnosis, or are most cases picked up easily?
Roxanne Perry 19:39
Yes. So, with kids, if you have a genetic cause or something that is a urological abnormality, one of the most common ones is called reflux nephropathy, where you have, where the tube that drains from your kidney to your bladder malfunctions, and the urine comes back up into the kidneys. So that’s one of the most common things for children.
But there are a lot of glomerular diseases, so diseases inside the kidney that affect children as well. So that’s the second most common, and that can be presented as blood in the urine. So, if it’s visible blood, of course, that’s quite concerning, but if it’s microscopic blood it might get picked up on as a urine sample, done for something else.
But yes, so there are some children that don’t get picked up. High blood pressure, for example, can be a sign in children, an early sign of something going wrong.
Megan Gilmour 20:35
Build-up of fluid in the body,
Roxanne Perry 20:36
Yes, build up of fluid, puffiness. But they’re late stages symptoms. So, we don’t screen them – if you’ve got children out there, have they ever had their blood pressure checked? Probably not, unless you’ve gone to hospital for something, and then they’ll get it checked.
So sometimes it’s routine screening, or just an accidental finding, for when they’ve gone to a doctor or presented to a hospital for something else, that you might pick up those symptoms.
Megan Gilmour 21:02
What about urinary tract infections that are reoccurring or something? Would that be a symptom?
Roxanne Perry 21:10
Yes, that’s one of the one of the signs of reflux nephropathy is recurrent urine tract infections. You know, a urinary tract infection doesn’t mean you’ve got kidney failure, and it is quite common in children, especially girls, but if it’s recurring, so more than three, three or four episodes, then they will investigate for that.
And if you’ve got a family history, so if you know that there’s a family history of kidney disease, there is genetic testing can be done now that we can identify some specific genetic conditions, and that’s becoming more and more advanced as well.
Megan Gilmour 21:49
Yes, thankfully
Roxanne Perry 21:50
Yes, so polycystic kidney disease is one common one that we hear of, and Alport syndrome is another one. So, there are a few genetic disease processes that affect your kidneys.
Megan Gilmour 22:04
Wow. Okay, learning more every step of the way here. What kind of complications do kids with kidney disease face? And this doesn’t have to be just physical.
Roxanne Perry 22:19
Yes. So, I suppose the biggest thing to think about is that there might, like I said, there’s no sign, so there won’t be something physically that will highlight to you that someone’s got kidney failure. Okay, so that’s a little bit different to a lot of other disease processes
But they will get delayed growth and development at times, depending on where they are in their treatment. Sometimes they can have cognitive impairment if there’re issues with a genetic type of disease.
Emotional and behavioral disorders, because they’ve had a lot of medical interventions. So, kids with kidney disease have to go through a lot of tests and procedures. It’s a very medical intervention, heavy disease. So, there’s always tests and needles and injections and treatments that a normal kid wouldn’t normally experience. So that comes with that, some medical trauma and some behavioral things that go around with that and being afraid.
They have sometimes strict, diet and fluid restrictions as well, depending on if they’re on dialysis, they might not be able to, they don’t do any wee at all, some kids don’t, then they might not be able to drink very much in a day.
If they have a lot of wee, which some kids do as well, they might have to drink extra. If you had a transplant, you need to keep really hydrated. So, things like diet and fluid restrictions and guidelines.
They have difficulty navigating normal milestones. So, it’s really important, because they do have a lot of time when they’re hospitalised. And if you’re in hospital, then you’re not up and around. If you’re feeling unwell and you’ve got symptoms, you’re not doing those normal milestones, you’re not moving around, you’re not getting those social interactions. So, there are those sort of things as well.
And it’s mainly their mental health can be quite affected because they don’t build relationships. They miss a lot of school. They are in hospital a lot. They have separation anxiety sometimes because they don’t want to be away from their parents. So yes, there’s a lot of a lot of different things, but physically you might not even know – there’s nothing that stands out.
Megan Gilmour 24:25
Yes, right, that sounds super useful to know. And I suppose, yes, I guess another question I have there is, is there a likelihood that they might have a different physical appearance or is that not part of the picture?
Roxanne Perry 24:48
Not really. Sometimes their growth will be delayed, so they might be a bit shorter than other kids, depending on when they’ve started dialysis. So, starting dialysis under the age of five, you might have some growth slowing.
They might be underweight if they’re on dialysis, but then, if they’ve had a transplant, some of those medications can cause weight gain, so they have high doses of steroids initially, so they can get a really round face –
Megan Gilmour 25:15
Yes, that’s what I was picturing
Roxanne Perry 25:16
Yes, but that’s only for kids that have had a transplant. If they’re on dialysis – there’s two types of dialysis, there’s hemodialysis, which is where you take the blood out of the body and put it through a machine and filter the blood.
And there’s another, another type is called peritoneal dialysis, where you put fluid into their tummy, but both of those need access, so they need a catheter to help them provide that treatment.
So, if you’ve got hemodialysis, they might have a central venous catheter or a central line, which might be up here somewhere, poking out their neck or their chest. And if they’re on peritoneal dialysis, they’ll have a catheter in their stomach that is a tube that connects up to their machine that changes the fluid.
If they’ve had a kidney transplant, then they’ll have the kidneys actually sit at, they’re implanted at the front in the tummy area, not in the back where your kidneys are.
That’s another misconception. You think that they take the kidneys are around in your back here, but the kidney transplant sits in the front on their tummy, so they’ll have to be really careful not to bang that.
Or they’ll maybe have a scar there. And sometimes, if they want to do physical activities, they need to have a little kidney guard that they pop on before they do it.
Megan Gilmour 26:30
Wow. I would love to go down the rabbit hole of why that transplant takes place that way, but I don’t think the audience is probably going to be as interested in that one, oh well possibly, I can’t presume
Roxanne Perry 26:42
Well, you have a look – there’s plenty of information our website. We have a lot of resources. So, there are some pictures and some diagrams and things in our website about kidney transplant. So, if you want to delve into it more deeply, you can have a look on there.
Megan Gilmour 26:56
Thank you. That’s great advice. Yes, that’s really, really important to know and understand. And there are some circumstances where children may look slightly different, but otherwise, I think we can say that kidney disease may be an invisible illness in many ways.
Roxanne Perry 27:22
Pretty much, yes, it is, yes, definitely. And a lot of the kids will talk about that that no one really understands, because no one knows why I keep missing school, and why I have to go to appointments all the time.
Megan Gilmour 27:40
Yes, and all of those things, like dialysis is taking place outside of the vision of anybody else. So, you’re just there, and then you’re not there, and then you’re back again. And so, nobody’s really seeing the impact physically on that child’s experience, which is obviously different to other children, even other children with chronic conditions.
So super interesting to – and just another reason why it’s so important for us to have these conversations and share this information so that a) we become more aware and understand more about the children we’re supporting, but also so that educators out there and school staff and other families understand more too.
So, this leads me to the next question, which is, how are siblings and peers of kids with kidney disease or failure impacted if, if that’s a part of your work, and what should families be across?
Roxanne Perry 28:45
Yes, so it is really tricky. Like you said, like, if they’re on hemodialysis, for example, one day they’ll be at school the next day they won’t. And as we know, it’s always hard for kids to come back in.
So, most kids dialyse three days a week, and they’ll have to go into a hospital center to do that on hemodialysis, so they’ll be gone for either the morning or the afternoon, sometimes all day.
Peritoneal dialysis, on the other hand, is done at home, but it’s done every night, mainly overnight for children, so they might be really tired, or they might have gone on late because they had a school function, so they couldn’t go on, and they normally have to do 10 to 12 hours of dialysis a night.
So, if you’ve got a school play or something that’s on and they’re not getting home till eight o’clock, they might be late to school the next morning because they have to finish their dialysis before they can come to school. And they have alarms, and there’s things that wake them up in the night, and so they might be tired.
Fatigue is a really common symptom for kids with kidney disease, especially on dialysis. They get really tired really quickly, because it is quite an invasive medical procedure, so that’s really important.
So, for peers, they’re coming and going all the time. So, we do find our kids will say that their friends from primary school understand them better than their friends from high school. And I think that’s quite common across chronic disease processes, because high school becomes a little bit more autonomous, but that primary school is a little bit more supportive in those friendships and groups.
Megan Gilmour 30:20
It’s an important point.
Roxanne Perry 30:21
Yes, so it is a bit, you know, high school is a little bit harder for everyone, I think, whether you got a chronic disease or not, in peer support and peer groups. But there are a lot of changes. There’s lots of ups and downs. So that’s really important for siblings and peers.
The siblings sometimes find that it’s hard for them to get the things that they need from their parents, because it is such a medically – the medical intervention in kids with kidney disease is quite a lot of work for parents, lots of appointments, different appointments for different people, lots of last-minute things, infections.
You know, if you’ve got a kidney transplant and you all of a sudden have some signs of rejection, you might have to go into hospital for a few days and get that sorted out. You could get an infection that makes you really sick.
If the sibling has got an infection, they might have to stay away from the transplanted child and go to grandma’s house for a little while,
Megan Gilmour 31:15
Yes, and away from the parent who’s caring for that child,
Roxanne Perry 31:19
That’s correct. Yes. So, there are a lot of – so Kidney Health Australia, we do kidney escaper events, and these are for families and children that have kidney disease, and that includes the siblings, because it is really important for the other siblings to be able to talk to other siblings of children that have kidney disease.
So, for many years, I was involved in kidney kids camp, which is a national camp that was held for all the kidneys kids to come together nationally, because there’s not many of them. There’s only sort of, what I say, 400 that we know of across Australia. And so, for them to come together and meet other children with kidney disease and get some peer support that way.
So, we also invited the siblings, and they found that just as useful, I heard some beautiful conversations between different siblings about how their experience and the things they hated and the things that they liked, and how they loved their brother or sister.
But it makes the relationship a little bit more complex, as we know, with any siblings with children with chronic disease, it can be a burden on them, because they feel guilty, because they might want attention. And all kids want attention, but they know their parents are busy looking after the child that is unwell.
And so, it is a balance of making sure that their siblings are supported, and also that the peers, the friends of these kids that are coming and going all the time understand what’s happening and can be part of that journey as well.
Megan Gilmour 32:49
Yes, thank you for that and just noting that guilt there for siblings. Yes, the guilt can be around feeling like a burden or asking for things. It can also be around the fact that they don’t have the disease,
Roxanne Perry 33:07
Yes, that they’re well
Megan Gilmour 33:09
Yes, that they’re well, they get to go to school, they get to go out, they get to play the sports they want, or all of those other things.
This was a point that my daughter’s the sibling, the sister, obviously, of my son who was unwell, shared this point recently, in a revelation to me, even after all of the years of my work, was that, if we could make school better for kids with chronic conditions, then it would relieve the guilt that siblings feel in the different differential experience and opportunities that they get, and their sibling who has a chronic condition doesn’t get. So, they’re carrying that as well, not just for being, in some cases, the well, the well child, but also the child that’s getting to do the things.
Roxanne Perry 34:03
Yes, and they also sometimes have a care burden as well, which we mustn’t forget about especially at school, if they’re both at school together, and mum and dad aren’t there, a lot of times you’ll call on the sibling if there’s something that the child might need.
Or they feel responsible, so they go and check on them at lunch time, or they go and help them with their lunch, or they help them with getting changed into their sports uniform.
And there are a lot of things that they do, that they become a carer for their sibling, and even in hospital, you see that as well, sitting playing with them on dialysis,
Megan Gilmour 34:37
That’s right
Roxanne Perry 34:38
And all those sorts of things. So, you can’t really underestimate that caring role that they do. And it is really valuable to recognise them, and to thank them and make sure they feel appreciated.
Megan Gilmour 34:53
Yes, that is absolutely right. And that care can even extend at times to enabling parents to be able to go to work.
Roxanne Perry 35:06
Yes absolutely
Megan Gilmour 35:09
So, it gets quite complex. Yes, a big shout out to siblings of kids with chronic conditions.
Do you know what the current population of school age children with kidney disease is? I think you’ve answered that, but again for completeness.
Roxanne Perry 35:26
Yes, I have, I’ve looked up on that. So, like I said before, I’ve got the data from the kids on dialysis and transplant. So, at the end of 2023, which was the last release of data, so it always comes sort of a year or so later, there were 10 children in Australia from zero to four, there were 17 between five and 14, and there were 60, between the ages of 15 and 24,
Now we do go to 24 because we actually count them as youth, because getting diagnosed with kidney disease, even when you’re aged 18,19, 20, it still has a whole different way of – it affects you a lot differently because you’d be at university, you still be part of an education system normally at that age as well.
Megan Gilmour 36:11
Yes. And I noticed there that the numbers are increasing in those age brackets as well.
Roxanne Perry 36:20
That’s right. So, if you are born with something and you’re managed really well, it might not be to your teen years that you end up needing dialysis.
Megan Gilmour 36:29
Yes. Do kids with kidney disease currently miss a lot of school? And why? I think you’ve answered this already [laughter].
Roxanne Perry 36:37
Yes, they do, and I probably have [laughter].
But some of the data we’ve collected shows that amongst those 12 years or older, there’s a higher percentage of those children needing modified schooling. So that means either they are doing part time school, they actually need some special needs in class, and some families even put their children into homeschooling because they find that it’s a little bit easier to maintain the educational needs without having to go somewhere to do it.
Megan Gilmour 37:13
And maybe that protective factor as well is coming into it for families – as just school is a Petri dish of community –
Roxanne Perry 37:20
Acquired infection – yes, it is! Yes absolutely!
But yes, it is definitely. And it is isolating. So, it can be isolating because you can’t sometimes participate in normal activities. And lots of appointments, aside from dialysis, there’s lots of doctor’s appointments.
They might need appointments with a dietitian, a physio, a psychologist, a social worker. They might have to have X rays and scans and blood tests and all those sort of things have to fit around.
And unfortunately, if you think about it all, what time do most health services open between nine and five, so for hours and not necessarily, open after hours.
Megan Gilmour 38:02
Exactly, yes, I, I used to try to timetable for after school. And this was post my son’s bone marrow transplant and him being back at school and everything. And, yes, the hospital used to get quite cross, because I was trying to schedule outside of when they wanted it, but I was trying to protect that precious time at school when so much of it had been missed as well, and not just for academics, but also that social aspect that you mentioned that’s so important to these kids, and the feeling of being normal.
And we talk about high school, not standing out, not being the one that’s coming in and out, like all these different things that play a role.
And I suppose puberty and the hormonal changes would have different kinds of impacts for these kids, as well, as maybe not complicating factors, physically, I don’t know, but certainly socially, it’s always a torrid time.
Roxanne Perry 39:12
Yes socially, and growth and changing doses. So, as with the dosing for potentially medications, as you grow, you might need more dosing. So, there can be times when things, especially in adolescence, when you’re having these big growth spurts that medications need to be adjusted frequently, which means more monitoring, which means more appointments to do blood tests and blood levels and all sorts of things like that.
Megan Gilmour 39:39
Yes, yes. And this is probably the moment where I always plug in the work that MissingSchool’s doing, and in terms of those absences, which are clearly recurring, and also, long stints too, at times, or even absences as a protective factor when there’s viruses raging in the in the school environment, to maintain learn from anywhere.
So two-way digital connection into the classroom for these kids, so that they can dial in when they’re even when they’re on dialysis, or when they are having times at home, to be able to join their classes through two-way, digital connection a long time alongside their peers and continue learning.
Remember that thing called COVID, where overnight schools went online with ubiquitous video conferencing technologies that we use every day now and even in work environments. And of course, you and I are here using this technology for our conversation.
So, from MissingSchool’s point of view, we’ve been using telepresence robots to do this. But really what we want is to get schools to a place where this flexibility is business as usual in schools and built in for kids like the kids we’re talking about, to just simply be able to join when they can and not miss school, to be able to be present and in the classroom.
So that’s, that’s our big goal, and it’s part of the reason why we’re having these conversations with people like you and your organisation, is to hopefully build a national consensus around something that we know is so easy to do if, if a tiny charity can do it and make that proof point, then certainly our education systems can do it with their large IT areas and all of their resources and capabilities.
And I recall, actually, very early on in our work in placing telepresence robots, was a student on dialysis who was waiting for transplant, and it was an incredible find for his family to think that he could keep joining class from clinic, or anywhere else.
And he went on to have a transplant and didn’t need the robot anymore. So yes, was back at school. So yes, it was just a proof point that I can bring in there, specific to our conversation as well.
So, what are the critical times in school life, if we haven’t covered them, and what should families and schools be prepared for at those times?
Roxanne Perry 42:47
So, adolescence is a is a critical time. You know, transition to high school, making that, changing those peer connections, making sure there’s still access, not standing out.
Modified school is another critical time. So, if kids are on dialysis, like you can set up processes because it’s fairly routine. So, if they’re on hemodialysis, like you said, you use the robot. That’s great. You knew when that kid was at dialysis, so you could link them in.
But then if you’re on a transplant waiting list, you get a transplant in the middle of the night, and everything has to stop, because you have to go for the transplant. And it’s three months really before after transplant, before you’d be back to any sort of routine or attending school.
So, those big chunks of time are another risk when they’re immunosuppressed, for missing school. And so having the opportunity to have those links in during those times as much as you can, would be really good.
We know that probably the biggest risk time for all kids that are on, especially those with transplant, is transitioning from pediatric care to adult care, which is part of that journey that they do in transition.
So, there’s a high risk of non-adherence. So, in the later adolescent years, there’s a high risk of non-adherence, because, like you said, peer pressure, you want to be like everyone else. There’re parties, there’s alcohol that comes to them, there’s all those risk factors.
Megan Gilmour 44:17
No, says the kidneys, no!
Roxanne Perry 44:19
Yes, no, no, none of that for the kidneys! So yes – complex kidney transplant compliance regimes, they have to take their medications at a certain time. You know, they’re 12 hours apart, so eight and eight or nine and nine, and all of a sudden, the kids are sleeping until midday.
Megan Gilmour 44:36
doing what kids do.
Roxanne Perry 44:37
Doing what kids do. So, all of those things make a big difference. So, yes, they’re the risk factor times,
Megan Gilmour 44:45
And schools have to play a role in that. There’s really no choice is there. Well, I suppose there is a choice, but kind of not. It’s life-saving measures.
Roxanne Perry 44:56
Yes, it’s about the risk management and communicating with the families and making sure that everyone knows what’s happening and picking up behaviors.
Megan Gilmour 45:07
That’s right, and even harder, when illnesses or diseases are invisible, as we mentioned earlier, because that isn’t creating a pressure point, and especially where kids would be interested in hiding symptoms, and we’ve seen, I’ve heard that in the teenage years, even incredibly detrimentally in cancer settings, where they won’t admit to things.
So, yes, the big, it’d be hard for schools to pick up on those things, if that circumstance is going on. Things that the school can do that we plug in here, and you mentioned the adjustments, or the flexible schooling situation, is that kids with chronic kidney disease or kidney failure or post-transplant are absolutely covered by the Disability Standards for Education.
It’s a very broad national regulation that sits under the anti-discrimination act and provides schools with the levers to – that’s every school, every single school, regardless of state or territory or school system, the standards apply to – enable access to classrooms, learning alongside peers, assistive devices, including telepresence, which we talked about, access to the national curriculum and to additional supports in schools.
And importantly, when the Disability Standards for Education are understood and applied to a student with a chronic health condition, the school can also get funding through national funding mechanisms to enable those additional supports that the school needs to implement.
So, it’s really important for families to know this and to know that being able to have an Individual Learning Plan through that standard is absolutely available. And of course, as we’ve talked about, something really important in the school too, is also that health plan, that health and safety plan in school.
And I like to call these plans, something that that we really hope to see is portable plans, that that plan goes with the student wherever they are, in whatever place of care they are, whether it’s at home or in clinic or hospital, and of course, at school, that that plan can apply so that they’re not missing their equal opportunity to an education, social connection and support that they need and are entitled to. So that’s the plug for the Disability Standards for Education.
School life challenges as we come to the end of the conversation here, you’ve covered off what the biggest challenges and vulnerabilities are really, really beautifully for us. Is there anything that you hear from families now or observe yourself in terms of what schools are doing to support students with kidney disease, failure or post-transplant, and do you see any areas for improvement in that?
Roxanne Perry 48:48
Yes, so I think so, I think, remember, the medical burden of kidney disease is the greatest issue for these kids. It is a lot of medical burden. So, I’ve got some quotes for some kids with kidney disease that I’d like to share. If that’s okay.
Megan Gilmour 49:01
Please, yes please.
Roxanne Perry 49:02
So, some of the quotes are, we did an investigation in 2018, we did a big report about kids and youth and what they needed for the national government, so with kidney disease. So, one of the ones was:
“It’s definitely hard to keep friends when you’re sick. I’ve lost so many friends because they just go and play with someone else when I’m not there.”
Another one.
“We were learning about multiplications, and it was okay. I didn’t have to learn it because I had learnt it before. But I was more bummed that I didn’t have that connection with friends. I wasn’t in a group, so I went back to school, and I wasn’t in a group, and everyone else had already formed groups.”
“It’s really hard going into classes when you don’t know anyone.”
When there’s no one in your class that you know, particularly for high school, yes, a lot of kids find that really difficult. If you’re in class with complete strangers.
“I missed half the grade, so I didn’t get what all the other kids got. I wasn’t in a group, I wasn’t in a group of friends, because I missed the first half of the year.”
So yes, so they’re just some of the things that, and for the families and for the parents, it’s about no one really understands. And I lose a lot of social connections because no one really gets it, because it’s not something unless you’ve experienced it that you understand. So, yes, it’s really important.
And one of the biggest challenges is kids with CKD don’t necessarily get access to any support. They’re not eligible for NDIS, and then some parents aren’t eligible for carers payment, depending on where they are in their financial life and what their situation is.
Megan Gilmour 50:48
We have disease burden with financial burden, proportionate to disease burden,
Roxanne Perry 50:56
That’s right. And the financial burden, is really high – really high for kidney disease.
Megan Gilmour 51:00
Yes, yes. And this NDIS, I mean, it’s so complicated, right at the moment, in terms of even students that NDIS recognises and supports, or children, I should say. But that is such a critical point because it affects the whole of a family’s life.
And I think this is what we’ve tried to capture through our questions and your answers here today is, you know, the effects are not just siloed into an education question, that they cover the whole gambit of family life, and that includes financial effects.
So, and we see, and I’m interested in your observation on this too, is the disproportionate impact on women and mothers in this setting, in terms of care work, either through the disease itself and treatment, but also through trying to maintain that education. Is that your observation in this setting as well?
Roxanne Perry 52:18
Yes, I think that most of the carers, are mums. I mean, occasionally you have dads or grandparents, and you have really good, supportive families, but other families, you know, not so much.
But there are significant financial challenges, because there is a lot of time needed to be taken off work to take your child to medical appointments.
So more commonly, the mother will be the main carer, and potentially maybe not work just for those reasons, especially if the child’s on dialysis. So that is an issue and not and you’re essentially supported.
Megan Gilmour 52:51
Yes, yes, you’re saying that some people don’t qualify for carers payments, so they’re having this double whammy of increased costs due to medical burden or care or treatment, and at the same time, work is affected, and that is disproportionately affecting women, mothers, and that’s a quite a complex mix there.
Roxanne Perry 53:18
And I think that comes with any chronic disease, that tends to be, I mean there are exceptions to the rule, and dads do a great job, and there are some dads that are the main carers as well.
Megan Gilmour 53:27
That’s right,
Roxanne Perry 53:28
So, shout out to them as well. But, majority of the time, it is the mothers that are the ones that are the care, the main caregivers, which we know.
Megan Gilmour 53:40
Yes and that has, I mean, by virtue of what we’ve talked about, we can safely say, though, I don’t know that’s the right phrase, that the family is also potentially struggling with the pressures of the situation; their own mental health, their own physical wellbeing as well as, as we’ve just mentioned, financial wellbeing as well. So that needs to be just hooked in there as well, too.
And it is interesting, across all these conversations we have, the disease or the illness, the health condition, the situation, they’re all different. But the lived experience has so many similarities that you know our data collection through these conversations, hopefully over time, is going to point to that.
These are the things across all chronic conditions from a life perspective, that that come through, and then there’s the medical differences.
Roxanne Perry 54:49
Yes. I suppose that the big challenge for kidney disease is that most schools won’t have experience with it. So, when you do come across a child with kidney failure and on dialysis or transplant, it might be the first time your school’s ever seen it.
And there isn’t a nice little checklist or form that you can fill in that will capture the individual child’s needs, and it is individual for every child. So, every child’s a little bit different.
Megan Gilmour 55:17
Yes, it’s personal as well.
Roxanne Perry 55:18
There’s no asthma care plan or anaphylaxis plan or something that you can just pop into place. So, it’s making sure that you’re getting all your health professionals that are involved in that child’s care to coordinate with the school and talk to the school.
When I was at the Women’s and Children’s Hospital in Adelaide, a lot of my time was spent going out to schools and helping kids basically start school, or transition back into school, or teach the people about what dialysis was, and so there are resources.
Megan Gilmour 55:47
Yes, I wondered if you’ve been an outreach nurse as well.
Roxanne Perry 55:50
Yes, so there are lots of resources that schools and families can draw on. So, the families can talk to their renal team or their healthcare professionals and say, can you come and help me navigate school is, you know, and there are people that are willing to advocate for you and your child as well, and let the school know what’s needed.
And then for the school, you know, answer their questions about because there’ll be there’s a lot of fear around especially transplanted kids. We find that even going on school camp is pretty much impossible for kids on dialysis. No one will take them on school camp. They’re too much of a risk.
Megan Gilmour 56:24
Yes, no, I believe it. And we hear that from others too.
Roxanne Perry 56:31
Yes, and then medications and all those sorts of things. So, medications at school, and we know how the process around that is quite complex. So, if they’ve got four or five medications that need to be taken while they’re at school during the day, how is that managed?
So, link into healthcare professionals. There are lots of supports out there that can help you to help with those sorts of things for both schools and their families.
Megan Gilmour 56:58
Yes, and we’ll give a shout out in a moment to just where you can head as well at the back end of this conversation. But that wrap up on other school quality of life matters, you really beautifully stitched that in there to help us. It was a great wrap up. It just helped us to understand how important it is and asking for help and knowing that help is out there.
And we hope that our conversations like this one, we’ve got some great things planned to address some of those things that we’ve mentioned there and systematise the way schools can get information and support, for example, on kidney disease, as quickly as possible through our National Insights for Education Directory, where we’ll have your organisation listed, and also capture the data that we’ve talked about today and put that there.
It’s that starting point to get people to that important place that you’ve mentioned, to get the help at the time that it’s needed. So, coming to the end, what’s your call to action for kidney disease in seven words or less?
Roxanne Perry 58:18
Yes, this is really hard. But don’t be afraid of their medical needs. Every kid’s medical needs when they’ve got kidney disease, don’t be afraid. Try and find ways to work around them.
There’s always a way to work around things. And always ask the family what you can best do to support them, not just the child, but also the family.
Megan Gilmour 58:45
I love that, and it really was a great bookend to what you said at the beginning, which is, ask the kids what they want, ask the kids what they’d like to do and what is going to give them the most everyday experience of life that they can have doing the things that they enjoy.
And so that requires being unafraid of finding the solution at the moment, but and not being afraid to move to that and rather than stay in limbo and be just worried about it.
So, at this point, we’re at the end of the call, which has been an absolutely fascinating and inspiring conversation. And informative, so informative, so much gratitude to you, Roxanne, for joining us today, and thank you for making time to have this important conversation so we can get the word out there, and also the health literacy out there as well, because you have that incredible experience that you can bring to bear and translate what I guess is sometimes a very complex setting into everyday language that we can all understand.
A big shout out to Kidney Health Australia, and you can head there for information, resources, support. So that’s kidney.org.au [https://www.kidney.org.au]. So, thank you for joining me today. Roxanne on Live & Learn, we are incredibly grateful.
Roxanne Perry 01:00:38
No problems, and don’t forget everyone out there to check your kidneys if you’re at risk.
Megan Gilmour 01:00:39
Love your kidneys.
Roxanne Perry 01:00:42
Yes, love your kidneys. Look after your kidneys and get them checked if you think there’s something not right or just do a test anyway.
Megan Gilmour 01:00:47
Yes, that’s perfect, perfect point to close out on.
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