RECORDED Thu 14 Nov 2024
SUMMARY KEYWORDS: eczema impact, chronic condition, sleep disruption, social stigma, no cure, symptom management, public awareness, mental health, co-occurring conditions, school challenges, peer interactions, treatment options, family support, school resources, emotional impact
SPEAKERS: Megan Gilmour, Melanie Funk
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.
Megan Gilmour 00:14
Hi, I’m Megan Gilmour, MissingSchool, co-founder and CEO, and this is Live and 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.
Megan Gilmour 00:48
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, and today, joining us is Melanie Funk.
Melanie was enjoying her rising career in human resources and had little understanding of the dramatic impact that chronic and severe eczema could have on individuals, families and community, until the birth of her twin boys in 2009.
Their journey and this condition compelled Melanie to establish Eczema Support Australia in 2015 and Melanie is the managing director of Eczema Support Australia, focused on the delivery of real and practical support for all Australians significantly impacted by eczema.
Welcome, Melanie. We’re so excited to have you on Live and Learn.
Melanie Funk 01:46
Thank you, Megan. I’m really looking forward to talking about this topic and what’s going to happen in the future, hopefully.
Megan Gilmour 01:53
Indeed. So, Melanie, today, we are here to talk about supporting school connections for students with complex medical or mental health conditions. And with that, we’ll kick off into our first question.
So, Melanie, tell us, if you’re willing, how eczema impacts kids and why it’s something every Australian needs to know and care about.
Melanie Funk 02:20
I think the first thing Australians need to know about eczema is, that it is more than just a skin condition. It really is a very, very itchy chronic condition, and it disrupts sleep in a big way, and it disrupts focus, overall wellbeing, and affects every single part of a child’s life and their family members.
And I think Australians also need to know that kids really do – with eczema – they really do struggle in school, and they miss out on things like social activities, and they face stigma and bullying. And yes, it’s, it’s a very impactful condition.
Megan Gilmour 03:01
Indeed, and even just the thought of constant itching. I mean, we’ve all had itching at some point, but that next level and constant is just on its own, incredible.
Melanie Funk 03:17
It is. I think the itch can never be underestimated or underrated. It is, it is the, the number one factor that we’re dealing with in eczema.
Megan Gilmour 03:27
Yes, incredible discomfort. So many people probably assume things about eczema. What’s the million-dollar question that you get from parents or loved ones when their child or person experiences or is, I guess, diagnosis might not be the right word, but when eczema presents in a chronic way.
Melanie Funk 03:51
Yes, I think the most common question is, often, can eczema be cured? Sometimes also what causes eczema? But then that question comes from the desire to know, can eczema be cured. Parents want to know if there’s a solution that’s going to stop their child suffering.
But the reality is, with eczema, there is no cure. There are ways, however, to manage the symptoms effectively, and so educating families on treatment options and the importance of managing the skin and triggers can make a huge difference. But yes, that’s probably the number one question we get.
Megan Gilmour 04:29
It’s interesting. That’s pretty much what everyone we interview says, no matter what condition it is. So, it just shows how distressing it is for carers as well and trying to find resolutions. And you mentioned there the word suffering, and I want to flag that, because people might not associate suffering with eczema, and I’m sure you’re going to share with us more about how that presents.
Melanie Funk 05:03
Yes.
Megan Gilmour 05:06
What’s the most important thing that you want these families to know?
Melanie Funk 05:10
I think what I want these families to know is that they’re not alone, and that support and resources are available. And I want them to know that eczema is a complex condition. Most people think of it as just a bit of an itch or a rash, but it is actually really complex, and it also can be, and often is, lifelong, but with good management, children can still live very happy, fulfilling lives, but it’s really important for them to know as well that open communication with schools and our healthcare providers is really the key.
Megan Gilmour 05:49
Melanie, we’d love to know what brought you into the world of eczema, if you’re prepared to share this.
Melanie Funk 05:56
Yes, yes, of course. I once made a video about this, because it can be really hard to share over and over again, and I’m sure lots of other parents whose children have gone through quite a difficult medical journey would feel the same.
But my journey with this world of eczema really began when my boys were born, as you mentioned earlier. My twin boys both have severe eczema, and they are now teenagers with very well controlled eczema, but the first several years in particular were exhausting and extremely isolating and very frustrating.
But I guess through that journey with them, I also got to see the struggles of other families during that time, the daily challenges, the impact it’s having on the wellbeing of everybody, particularly the child and the family members.
But also, I really saw that lack of general public awareness and understanding of eczema. So that’s what inspired us to really start Eczema Support Australia to provide that community and the resources and the advocacy for families and individuals who are really trying to navigate this really complex and often under recognised and underrated condition.
Megan Gilmour 07:17
Well, from us to you, thank you for doing this work, because the work itself would not be easy. I can imagine that, and that it’s coming from your lived experience. And I recognise those feelings. The reason I’m doing this in school is because of my son’s medical journey, which I won’t go into, but I do recognise the emotions and feelings that come up when we’re going to report on these things, but of course, it’s never a report.
We can never be separated from that, and not just what our child or our children have gone through, but our own journey of grief around that, not to mention, as you identified, the load that is placed on a family, particularly mothers, in trying to navigate this.
And I want to acknowledge that this happened from the get-go for you with two children at the same time who were only babies. So that would have been, you know, you can’t even reason with a baby or ask them, or try, you know, to soothe with conversation. I suppose you know that’s also got to be a part of that struggle.
Melanie Funk 08:44
That’s right. And I think, you know, we talk about sleep deprivation in people with eczema, but the sleep deprivation for the parents dealing with these chronic conditions, particularly conditions that keep you awake all night with itchy little ones, it just has that knock on effect to the whole – well every part of your life.
Megan Gilmour 09:06
Yes. And I imagine for the boys too, it was a rather fast start to for their little immune systems, but also their nervous system as well.
Melanie Funk 09:19
It is yes, there is a lot of co-occurring conditions with eczema. With atopic eczema, you’ll often find they’ll have or develop asthma, hay fever, food allergies. But interestingly, there’s also a high incidence as co-occurring of things like ADHD and ASD. They’re not sure why, maybe environmental something, but there are a lot of things to contend with.
Megan Gilmour 09:52
Yes, yes, and I’m sure we’ll get into – a bit more through our questions – into the sort of mental health space in all of this too.
So, knowing all that you know which this is, which is an incredible, incredible body of knowledge. What’s your biggest hope for kids with eczema, their families and loved ones when navigating this condition?
Melanie Funk 10:23
Yes, my biggest hope for kids and their families is to feel fully supported and understood in every environment, but especially schools. So, we developed an eczema school kit for that, and we’ve also got an e-learning eczema awareness course for educators or teachers to help them be equipped to support.
And a whole range of other resources we’ve developed for families living with eczema from a video series called practical parenting for eczema families and online toolkits, and we’ve even got dedicated resources for teenagers with eczema, because I think it’s important for people to know that this is often a lifelong condition. We associate it with young children, and it is often more prevalent and worse in early childhood, but teenagers do get eczema as well as adults.
So, I really hope for that greater public awareness, better treatment options, and more inclusive environments where kids don’t feel so different or alone because of their condition, whatever that condition is. And of course, one day, I hope for a cure, but in the meantime, I just hope for the best treatment and care available so we can allow our kids to learn, develop and to thrive during these really important developmental years.
Megan Gilmour 11:41
And thank goodness you’re out there doing this work to help, you know, some of those goals come to the forefront. So yes, thank you again.
And we will give some pointers to those resources at our wrap up, and we will put them on our podcast page when this is live, so people will be able to find them.
So, what are some of the common and perhaps frustrating public misconceptions about eczema, and how have you seen this impact families?
Melanie Funk 12:25
Yes. There’s an unbelievable amount of misinformation and misconceptions about eczema. You know, one frustrating misconception is that eczema is contagious, or that it’s caused by poor hygiene, which is just wrong. It’s not contagious and it’s not caused by poor hygiene, and these sorts of misunderstandings can lead to things like bullying, especially in school environments, social isolation and unnecessary embarrassment.
Another common myth is that eczema doesn’t require special medical attention, and that can downplay the condition’s impact on quality of life, and it can lead to missed support opportunities for families who are really struggling to manage it on a daily basis.
There’s also a lot of misinformation regarding the causes and so-called cures of eczema. I think there’s a lot of money to be made from these families, unfortunately, and people will prey on that, but that misinformation can, at best, be an expensive waste of time, but at worst, can also result in really poor eczema control and more heartache for the families.
Megan Gilmour 13:44
Yes, I hadn’t thought about it that way, but I can imagine in the face of vulnerability, there are people taking advantage of that, or maybe even thinking that they have a solution. And as you said that it could be benign but also incredibly harmful.
Melanie Funk 14:07
Yes, there’s a lot of well-meaning advice given out there. But I think unless you’re really going through this to the level that many families do, or you’re a health professional that has a special interest in this area, it’s really easy to give out the wrong information and the wrong advice. And there is no cure, for a start, and yes, there’s, there’s no miracle, unfortunately.
Megan Gilmour 14:39
No quick fix
Melanie Funk 14:42
No quick fix, but the treatment options are improving, there’s hope…
Megan Gilmour 14:46
Yes. I was just going to say, just picking up on a couple of other things you said there, which is assumptions being made about the person’s hygiene, or that it’s contagious, and the way that that would affect social relationships, particularly with young people who may not have, you know, the emotional or cognitive skills to challenge their assumptions about that, and how the visibility of eczema would attract attention to a young person when they don’t want to stand out. Making that a level of social discomfort as well as a physical discomfort.
Melanie Funk 15:40
Absolutely. Yes. I think education within this, you know, the immediate circle within the schools, is so important as well. And when we consider how many children do have eczema, I think everybody needs to understand it more.
Megan Gilmour 15:54
Yes, so that’s exactly where we’re heading. How many Australian children and youth are living with eczema right now?
Melanie Funk 16:00
Yes. Well, we now know that about one in three Australian children under the age of six have eczema, and one in five under 14 years old have eczema, so it makes it one of the most common childhood conditions, and that high prevalence really does underscore the need for awareness and support in schools and communities.
Megan Gilmour 16:25
Absolutely, that is a lot of kids. Yes, when we consider how many…there’s 4 million Australian students, and you’re saying…
Melanie Funk 16:43
So, if we took that on average, let’s say you look to even from early childhood learning right through primary school. You know, you’ve got around 30%
Megan Gilmour 16:56
Yes, we’re talking about 800,000 to 1.2 million kids, that’s a lot of children who are uncomfortable at school.
Melanie Funk 17:11
There are different levels of severity obviously, but yes, a lot of uncomfortable, probably sleep deprived, itchy, embarrassed,
Megan Gilmour 17:20
Yes, and we’re going to get into some of that symptomology, because that’s also going to have implications for school. So, this question is one that we ask all the time. Is there a risk of delayed diagnosis, or are most cases of eczema picks picked up easily?
Melanie Funk 17:39
It’s actually a really good question for eczema can actually be diagnosed fairly easily and fairly early, but sometimes the mild cases might not receive the immediate attention that they need. Misdiagnosis can occur and does occur, or delays can occur, especially if the child has atypical symptoms, because it can appear differently, especially in skin of color, excellent appears very differently in skin of color than it does in more fair skin.
So, when you don’t have that appropriate diagnosis and early management is very difficult to minimise the impact of the conditions on daily life and the longer-term complications that come with eczema.
Megan Gilmour 18:31
And what kind of complications do kids with eczema face?
Melanie Funk 18:37
Kids with eczema have several complications, including infections from broken skin. That is a big one, and it becomes like a vicious circle. Sleep disturbances, obviously due to itching all night, all day, all night, it doesn’t stop when they try to sleep. And other complications of things like emotional challenges, like anxiety, low self-esteem, and as I mentioned earlier, eczema can also coincide and be the catalyst for things like the development of asthma and food allergies, which further complicates the management, and as mentioned too, there’s often co-occurrence for things like ADHD.
Megan Gilmour 19:23
And in the mental health area, you mentioned anxiety. What about depression? Is there any?
Melanie Funk 19:34
Yes, particularly, depression is certainly more prevalent in adults with eczema. I think anxiety – I don’t have the statistics around children and anxiety – I’ve got a few statistics, not in hand right now, around families and parental anxiety with children with eczema and the mental health impact on families, but with children, there’s often the underlying anxiety, which can further later on, develop into depression and isolation.
Megan Gilmour 20:10
Yes. It’s just worth noting here that conditions that we can often look at as everyday things can be having extraordinary impacts, especially on young people, and you know, and even the management of that and the treatment of those things. Do you notice, or is there any research on an association with trauma to do with eczema?
Melanie Funk 20:51
Yes, there are quite a few more studies happening, and it’s been long recognised as well, that bi-directional impact, psychological impact of eczema. So, eczema can also be triggered by stress and trauma. Trauma and stress can also trigger eczema flare ups. That’s been long established.
We’re actually doing our own research on this next year, on the impact of psychological interventions into quality of life for eczema management. So, we hope to have a lot more Australian data and information around that whole topic as we go through that research program.
Megan Gilmour 21:41
Yes, so correct me if I’m wrong. So, this is about seeking to understand whether emotional regulation and those types of things and better mental health will have a positive effect on eczema symptomology. Is that right?
Melanie Funk 22:01
Yes, both a positive effect on the eczema symptoms, but also a positive effect on general mental wellbeing. Because we do know that the symptoms in themselves, whether they’re triggered by stress or whether they’re triggered by heat, or triggered by other irritants and allergens, cause psychological distress. So, it goes both ways. It’s very hard to separate the cause and effect.
Megan Gilmour 22:34
Yes, yes. And this is one of the things that comes up on these calls, these conversations, is the interplay between the physical condition and mental wellbeing, or a lack of mental wellbeing, or indeed, mental illness, in some case. And the fact that there is a very close correlation or interaction between these. And it’s unfortunate, therefore, that conditions are talked about on their own, and then mental health is talked about separately, as if that happens to different people. And this is something we’re trying to address in our work.
Melanie Funk 23:15
And certainly, it’s been a focus for us from the very beginning. I personally know how much it impacted me as a parent. And the other thing that we’re just releasing now is we’ve actually developed a course for psychologists about eczema,
Megan Gilmour 23:29
Wonderful,
Melanie Funk 23:30
To help psychologists support families and people with eczema, and a self-esteem empowerment course available as well for everybody. So, there’s a lot happening, because we know how much more support is needed out there for mental wellbeing, for people with eczema and chronic conditions.
Megan Gilmour 23:50
Yes, and I’m going to slip in one more question here that wasn’t on my list, but because we’re talking about external triggers and external stressors for eczema, has there been, or is there any evidence for, the impact of the COVID pandemic, on children, in terms of eczema, like post COVID, say, for example,
Melanie Funk 24:24
I can only speak anecdotally at the moment, and it may not be the answer that you’re expecting. And I’m probably speaking anecdotally more from the point of view with many of the adults of eczema during COVID.
For many of the adults with eczema, at least COVID was almost a blessing, because they were able to isolate, put themselves in their own safe bubble away from allergens and irritants. So, in some respects, a lot of our eczema community breathed a bit of a sigh of relief for a while, and they were used to self-isolation, not a healthy approach, necessarily, but
Megan Gilmour 25:04
But this was sanctioned isolation!
Melanie Funk 25:07
Yes, it was sanctioned [laughing]! So yes, it’s in some respects, yes, very difficult for the social development, particularly the young children with eczema, because even though they are struggling and sleep deprived, they do need that social interaction and a school or a social environment. But yes, for some it was a bit of a blessing.
And look, I’ll share a little bit more on my personal journey with eczema. When my boys started school in prep, they we thought we got them to a, well, manageable level with their eczema and other allergy issues, but within weeks of starting in a school environment, they went downhill so rapidly that the specialist said you need to homeschool for a while.
That was not on my plan, not on my agenda, to homeschool. We actually did do that. We didn’t have a choice at the time – school did everything they could to support us at the time, but it just wasn’t enough, and their bodies couldn’t cope with the environment.
And we ended up homeschooling for five and a half years before they returned into the school system.
Megan Gilmour 26:23
This is a big journey
Melanie Funk 26:25
It is a big journey, and it is isolating, which is why it’s so important to have that connection with others that do understand and have that support and understanding. Because there are times when as a family, you have to put yourself in the bubble just to physically get on top of the condition.
Megan Gilmour 26:46
To survive. Yes, that’s really, really tough. So am I hearing correctly, that big for whatever reason, being out and into the world at age five, and in a school environment where there might have been different environmental stressors worsened the eczema. Is that what we’re hearing?
Melanie Funk 27:17
Yes. So, there were a lot of particularly environmental triggers, whether it be dust mite, pollens, grasses, heat, just other things in the environment. For many kids, sand pits, grass, playing out in the oval, anything like that, can trigger a flare. And when you’ve got one flare on top of the other, and you’re not getting on top of it, things can go downhill rapidly.
Megan Gilmour 27:42
And that would be physically debilitating, as in your immune system that gets so thumped, that lethargy and just, you know, exhaustion almost,
Melanie Funk 28:01
My boys were spending half their school day every day in the nurse’s office with the nurse.
Megan Gilmour 28:08
Was that at that time?
Melanie Funk 28:09
Yes, at that time, and what was happening is their medication levels were going up and up and up and up, just to try to combat their situation.
Megan Gilmour 28:22
Were you recommended to distance education at all. I’m just curious about that.
Melanie Funk 28:27
Well, it was my choice. We, we went the eclectic route, did a bit of a little bit of distance, a bit of bit of this and a bit of that, and we muddled through, and I think did quite well. But every, I think every family chooses their journey there, but not every family has the luxury and ability to home school, and certainly ages and stages.
We did get into the flow of things, and we did enjoy it. But then it got to an age where one of my boys decided that he actually really wanted to go back into mainstream school. The other one followed as well, and thankfully, that’s been really smooth sailing, and they’ve done well, but it took years to get to that point for us.
Megan Gilmour 29:17
Yes, and you mentioned there, we’re going to go into this a little bit more, but your career. So, what happened there?
Melanie Funk 29:28
Yes, I literally ran out of the office one day to run to childcare to collect one of my boys who was bleeding all over the place again, ripped off all these dressings and the childcare centre was just really struggling. The triggers were getting worse, and it was out of control. The other one was head to toe in eczema as well.
I ran out the office, took leave, extended my leave, had to extend further. And there were two reasons for that. One was my boys needed 24/7 care, and the other reason was I was completely emotionally, physically, mentally exhausted over those years of not having any sleep myself.
And so, there were two reasons why. In the end, I had to let my workplace know. I don’t think it’s fair on anybody for me to come back. They were really lovely and supportive, thankfully. But my career that I was really enjoying, that was going so well, just got, suddenly cut short.
Megan Gilmour 30:43
Yes. And I want to acknowledge this is a reality for many people, not just in their eczema context, but in any chronic health condition of their child, and that your own life is fundamentally changed in the care of your children, which, of course, is the first thing, yes, but, but there are consequences to that. And were, do the boys have siblings or another sibling?
Melanie Funk 31:17
They don’t. And in many ways, I think having twins with this condition was actually a blessing in disguise, because they already had empathy for each other. They already had the same level of attention from me.
Whereas I think that, you know, siblings who don’t have the eczema may not quite understand what their sibling’s going through. And also, the sibling without that condition is not getting the same attention level of the parents and the time from the parents.
And also, even siblings in a household with a child with eczema, regardless of whether it’s a younger or an older child, they lose sleep as well, because when you’ve got one person up and irritated, parent up and irritated with eczema all night, everyone in the household is disrupted.
So, my boys both have the severe eczema and in many ways over the years, you know, when people say that must be so hard, in some ways, it was actually easier and look, I think even with my career changing, life change, it’s in the long run, it’s been a blessing. We’re doing things together that is so fulfilling and rewarding now with Eczema Support Australia, I wouldn’t have it any other way, but it certainly wasn’t in the plan book.
Megan Gilmour 32:51
Yes, yes. And that that is just so beautifully put to have purpose and to live with purpose. We don’t get to choose everything that happens to us, but we can choose what we do.
But as you said, not everybody has your skills or is in your position or has the means to homeschool, for example. So, you know, it’s neither of us want to leave anybody with the impression that this is the way it looks for everybody. And just what you flagged there about siblings is obviously what you’re seeing with other families that come to you and share their journey about the other children in the household, including what none of us probably would have imagined is, it’s not just one person waking up, it’s the disturbance through the night.
But also, you know that that pressure point of itching, of being sore, of bleeding or and you mentioned dressings, and I wasn’t picturing any of this as you were talking earlier. So, everyone can imagine now that there’s coverings in some cases and there’s all of that going on in a childcare or in a school setting, and this young person has had little sleep some nights that they’re getting up and trying to go to school.
Melanie Funk 34:32
That’s right. So, yes.
Megan Gilmour 34:35
It’s a big journey
Melanie Funk 34:36
When you see it, it’s sometimes the visual reminders of what life with eczema is like is quite confronting.
Megan Gilmour 34:45
Yes, and I feel humbled by this conversation, because I can put myself in the category, even though I do this work that I’m learning so much about a condition that seems like a bit of an everyday condition, but I do know one of my cousins, when he was a baby, it’s a very, very similar situation to what you’re describing. But of course, I was too young then to be able to fully understand or appreciate how difficult that was.
Before we move on to a bit more about school, what about peers? What happens to peers, friends and peer group sort of engagement and that sort of thing?
Melanie Funk 35:32
Yes, look, we hear some horrendous stories of bullying and isolation for many kids going through this, and it all comes from misunderstanding or not being educated on what eczema is.
We’ve been fortunate ourselves because we’ve been the educators around eczema. So, it’s because my boys have been able to, from a very young age express to their peers what eczema is and that it’s not contagious, that they’ve been fairly quickly accepted and been able to deal with that, and possibly being homeschooled during some of those difficult years, may have helped as well. I’m sure it did.
Yes, that bullying aspect is something that is very prevalent. And we hear from adults as well, who are still traumatised from their school years of having eczema. And even, you know, many kids are going to school with tubular bandages on their arms and legs to protect them and try to lock in that moisture so that they’re straight away visible from a distance, that there’s something different here.
So, it’s quite easy for a child to become withdrawn, not want to go to school, and even as an adult, to still have traumatic feelings from that age.
Megan Gilmour 37:12
One more quick one before we go onto school. Is eczema as a condition becoming more prevalent?
Melanie Funk 37:27
Yes, it is, especially in western developed countries, and especially in Australia. The data, we could have a lot better data collection around those numbers, and we did release a report end of 2023 around the burden of eczema and prevalence, it is increasing. There are many theories for that, but it is becoming more prevalent in many cases.
The good news is there’s also a lot more research and treatment options on the horizon that are game changing and very exciting, but yes, we’ve got a long way to go to make sure that those treatments are available and accessible as well, especially to children.
Megan Gilmour 38:20
Yes, and that early intervention. So, what’s the current population of school aged children with eczema? And how accurate is this data, if it’s tracked?
Melanie Funk 38:33
I think if we look at all the data, and I’m going to give you very – so we’ve got 2.8 million people in Australia now that with the latest data that we can say have eczema. Of those, potentially 600,000 have the more moderate to severe eczema.
But then, when it comes down to tracking numbers on age related eczema, I can roll off some statistics, but we’ve averaged it out. If you look at early, primary and high school, you’re looking at over 20% of school aged children, but probably more like 30% of primary school aged children with some form of eczema.
Megan Gilmour 39:20
So, we said, if my calcs are right, 800,000 to 1.2 or 3 million students in a student population of 4 million, it’s a lot of children. It is the kids with eczema who miss school a lot. And why?
Melanie Funk 39:44
They do. They often miss school, and the reasons are flare ups, because eczema is a flaring condition. Once you get rid of the flare, it doesn’t mean it’s never going to come back again. Another trigger will flare up, and then you have the broken skin, which can lead to infections, which can make them very, very sick.
There’s also a lot of medical appointments and remembering, these kids don’t just have one condition. It’s very rare for a child with eczema just to have eczema. There’s lots of different medical things going on, but probably one of the biggest things leading to missing out on school is sleep deprivation. It makes it really difficult for kids to concentrate and attend classes.
So, I think right up being able to acknowledge these challenges and creating flexible options and support within the school environment is really important.
Megan Gilmour 40:40
Right, yes. And so that’s in the school environment. When they are missing school, that’s another question. That’s what we’re about.
Melanie Funk 40:50
Yes, and I’d be very interested to – aside from just going straight to homeschooling – I’d be very interested to look at more options for supporting during those times when they’re not in school, and how to connect socially and developmentally and with the school. Because we weren’t aware when we were facing this personally, of what the options were. It was either you’re there or you’re not.
Megan Gilmour 41:23
Well, exactly. That’s the way school is designed, and we’re hoping to change that. We’re hoping that changes.
So, you mentioned there, you know, there’s the obvious that the skin condition, but then there’s that, the itchiness, the discomfort, the stressors that can be in schools that worsen that sensation, and, in fact, the condition, and then the risk of infection, when there’s splits in the skin and things like that.
And then there’s the treatments that are going on, and then there’s the sleep deprivation. So I don’t think any of us would be wanting to send a child who’s slept for an hour one night back to school, because not only is that going to be a difficult day for concentration and all of that, but also, imagine that’s just putting the body under further pressure without rest, and I imagine that might make the symptoms worse as well.
Melanie Funk 42:30
Yes, absolutely.
Megan Gilmour 42:33
So, we have all of that.
So, I can say what missing school is working on now. So, we’ve been working since – we’ve been around since 2012 – we’ve been working on policy and trying to get consistent recognition of children with health conditions across Australia, their school life, the impact of missing school.
So, as you’ve said, this child can be born with eczema or have eczema in their very, very early years and throughout their whole school life. So, it’s really easy to see the amount of school missed to a child with, say, cancer, versus someone who has eczema throughout their whole school life, is missing days often, and then maybe longer periods, and then medical appointments. And when that all adds up, it’s a lot of school missed across a whole school life.
So, one of the things that we are really passionate about is that two-way digital connection to school when a student can’t physically attend is an option, so that you can dial into class in your own class, with your own teacher, and learn alongside your peers.
And everything in our regulation, the Disability Standards for Education, which is a regulation that applies to every school in Australia. Doesn’t depend on state or territory. It doesn’t depend on school system, whether it’s a Catholic school, an independent school or a public school, and so the standards do provide for access to school if there’s a physical impediment.
That’s why we have wheelchair ramps, and now we have digital technologies and the standards the way they’re worded right now, talk about access to the classroom, access to curriculum, access to inclusion and access to additional supports, and all of these things can attract increased funding for the school to provide those supports too. So, I think that’s an important point.
And individual learning plans that provide adjustments for students, whether it’s additional exam time or being in a different room or in a cooler room, or all of these, all of these different adjustments that could apply to specific circumstances, if they’re reasonable for the school to implement, those are also on the table, but often we’re seeing students with health conditions, including students who have extensive absences, and I don’t mean just in one block of time, across years or months or their whole school life.
Our petition is that that absence itself necessitates adjustments, and it’s why we’re now in this 21st century that we’re living in, where you and I are meeting from different locations, and we have work from anywhere, and we have universities delivering online and the VET sector as well.
Melanie Funk 46:03
Probably one of the one of the benefits of the COVID period is it helped really develop these digital opportunities for us all.
Megan Gilmour 46:15
Yes, and we were doing this in 2017, so, like you said, and you said, this is probably not the answer you want to hear – and I’m actually open to any answer, because I find this really fascinating, because what we saw is the COVID period and the forced online, remote education actually supported many of the students that we support, where they were joined with their classmates, with their teacher, and they were all having an equality of opportunity.
Now I’m not suggesting we should put all schools online for all kids. That’s not what we’re talking about. It’s more about when that physical presence is not able to happen, that this opportunity can be provided, and so that school continuity is not disrupted.
And that what we see through our data is that the transitions in and out of school become easier. So even for treatment or appointments, because the student is still there, that sometimes they might be there online, and other times it’s physical. And this, as reported by parents, reduces anxiety. So that’s also a good, good thing.
What are the critical times in a kid with eczema’s school life?
Melanie Funk 47:56
Yes, I think transitional period seems like when they’re starting school or moving to a new grade, or things like preparing for exams, can be especially challenging for kids of eczema, because these times we know they all increase stress, which can trigger a flare up.
So, I think those are the times when schools and families should be working especially closely together to provide that additional support, and I guess the other time with eczema to consider is different seasons too. As another complexity and frustration in dealing with expert school, the summer season, the heat and the sweat can bring irritation. The spring season can bring grass and pollens that cause an allergic reaction and flare ups. And in winter, the dry, cold air and heating can dry out skin and trigger flare ups. So, it’s a bit of a catch 22 even just with dealing with the seasons alone, let alone, yes, your exams etc.
Megan Gilmour 49:03
Yes, those big moments, and then the little moments, the excursions or the other things, the sports they or, I guess those get disrupted as well.
Melanie Funk 49:16
Absolutely, yes.
Megan Gilmour 49:18
So those developmental – those rites of passage and things that are so important to development and socialisation. What should families and schools be prepared for at different times?
Melanie Funk 49:34
I think it’s important to be prepared for the fluctuating nature of eczema and flaring nature, where symptoms can worsen sometimes due to, as we said, stress, seasonal changes and other triggers. Sometimes everything’s going along nicely. So, it isn’t always at the same level.
So, what they can do to be prepared is that regular communication about the child’s needs and the plan for managing the flare ups when they happen are really valuable, making allowances for lateness, even making allowances for different things, like school uniforms, so uniforms can trigger eczema irritation and external flare ups. And there are lots of different little practical things that families and schools can consider, which we list in that eczema school kit.
Megan Gilmour 50:29
Yes. Have we missed any big challenges or vulnerabilities facing kids with eczema at school?
Melanie Funk 50:41
I think we’ve covered the main points. I think it’s, just that, that understanding… okay, one point that I would like to stress for teachers and families is that children with eczema scratch. It isn’t a habit. It isn’t something they’re doing to annoy others. They can’t help it and saying stop scratching or getting annoyed with them scratching, is not going to help. It’s going to make things worse. So, distraction, trying to cool down and treat, you know, avoid triggers, etc., manage your skin, it’s all important, but distraction can help. But to say, ‘stop scratching’, that just makes things worse. So that’s probably one point we haven’t mentioned before.
Megan Gilmour 51:37
A good point, and it could be traumatic to be told that you can’t do something when it’s you’re being compelled to do it, the sensation in your body.
What’s happening now to address these challenges (at school), and is it enough?
Melanie Funk 51:56
Well, we’ve got freely available programs, available like some school kit and the expert awareness course for educators that can help provide that practical guidance and support for teachers, carers and parents, but they need broader implementation.
They need to be constantly rolled out and utilised, and there needs to be a lot more awareness and practical support in schools to meet those needs. So, I think we’ve got some things happening. It’s just a big job.
We’ve got a lot of kids dealing with this. A lot of it is under recognised, underrated or even hidden, because some kids are really good at hiding their eczema and even hiding the scratching, but being aware and implementing those resources, I think, would make a huge difference.
Megan Gilmour 53:00
Yes, so I’m hearing there that you’re providing the information and guidance and toolkits and checklists and things to consider, but generally schools are not currently well-equipped consistently or aware to consistently implement those measures.
Melanie Funk 53:27
Yes, and we are still working on that. The other thing that we’ve been working with, in collaboration with the Australasian College of Dermatologists, RACGP and many other organisations through an alliance is we now have a new, very practical, excellent care plan that we can share with the health professionals, but also the teachers and educators, so that we’re all on the same page with that individual child’s needs and treatment. And it just doesn’t just cover the medical needs, it looks at the holistic needs of that child.
So, using things like those eczema care plans so that there’s you know that you’ve got your GP, your parent, your pharmacist and your teacher all on the same page and understanding what the situation is, can be really helpful as well.
Megan Gilmour 54:27
Yes, this is one of the things that we’re also, I suppose, grappling with as a society, is with the increase of chronic conditions and medical science supporting cures and longer life in conditions where that was a problem in the wrong direction, as in those children didn’t survive.
I’m not saying that’s the case in the setting of eczema, but we have a case where chronic conditions are on the rise, and so there’s greater prevalence in schools, and we have a teacher shortage now, so we have teachers trying to not only teach in complex settings, but also deal with children with conditions, as in you pointed out as and we know that it isn’t just one condition, either. There’s a complexity for that young person that could be going on, and we describe it as a Venn diagram of things.
This is the reason we’re having these conversations, so that collectively, we can start to make it easier for schools and quicker for schools and teachers to be able to get that information and not have to go into the depths of the why it happens, or, you know, the medical side of it that they can’t even understand. But just to say, what do I need to know to keep this student learning and that they’re safe? So, I think that’s our collective goal is to make it as easy as possible to support these kids in school and out.
Melanie Funk 56:28
We get a lot of calls from schools, wellbeing officers, principals, teachers, saying, I’ve got this child in my classroom, I don’t know what to do. I can see they’re in distress. I can see that they’re missing out on a lot of school. They’re struggling. Can you please help and so it’s it is about collaboration. It is about that communication between the parents and the teachers, but other bodies that can help as well, whether it’s us, the healthcare professionals and organisations that can really just help bridge that gap.
Megan Gilmour 57:06
Yes, and we’re sort of saying that even if a teacher didn’t know the name of a condition or didn’t know anything about it medically, but really understood what it means for school and what adjustments and protections and other things need to be considered, whether it’s to do with the academic setting, or whether it’s to do with trying to get a child to do sport, or, you know, as you were mentioning before, you know at times where pollens are high, and other things in the schoolyard, that there’s collaboration and a way to make sure that day is the best day that it can be, not only for the student, but for the teacher as well.
Melanie Funk 57:50
Yes.
Megan Gilmour 57:52
So, as we come to the end, is there anything else that we should be asking about school quality of life for eczema?
Melanie Funk 57:59
I think I’d just like to add that the support for that mental health is crucial. We’ve talked about how eczema can be incredibly isolating and stressful. So, it’s about addressing both the physical and the emotional needs of the kids with eczema to improve that overall experience. And I think, yes, just that support, understanding and empowering the kids themselves with eczema to be able to speak up when they need help, and to direct them to the trusted sources of information.
Megan Gilmour 58:40
And a kinder world.
Melanie Funk 58:42
Yes. Absolutely.
Megan Gilmour 58:46
Melanie, what’s your call to action for eczema in seven words or less?
Melanie Funk 58:52
Support, understand and empower kids with eczema.
Megan Gilmour 58:58
Brilliant. That sums it up. So, we want to give a shout out to you, and everyone involved with Eczema Support Australia, and thank you for your work again. And so, I’ll let you know where to find Melanie’s work and the team’s work, eczema.support.org.au, that’s eczema.support.org.au [https://www. eczema.support.org.au].
Give generously and know that there’s some amazing resources there. Again, we’ll link them on our podcast page when we put this up. And we want to thank you so much for joining today on the Live and Learn podcast, Melanie. It’s been amazing learning from you and just celebrating the work that you’re doing out there that will be making such a difference for so many kids and families and therefore teachers and our whole community.
Melanie Funk 1:00:12
Thank you very much for the opportunity.
Megan Gilmour 1:00:15
Our pleasure.
Megan Gilmour 1:00:19
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 MssingSchool.org.au, because every dollar makes a difference.
View the episode here.
