RECORDED Wed 16 Sep 2024
SUMMARY KEYWORDS: chronic pain, pain, children, condition, support, school, parents, siblings, chronic pain conditions, pain management, diagnosis, impacts, education, schooling system, kids, education
SPEAKERS: Megan Gilmour, Nicolette Ellis
Megan Gilmour 00:00
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, we have Nicolette Ellis with us.
Nicolette is the chair of Chronic Pain Australia and an advanced practice pharmacist with an impressive advocacy, strategic thinking, policy innovation and governance reform background with both professional and personal experience in chronic pain, supporting health consumers, engaging with health practitioners and caring for her wife, who lives with endometriosis.
Nicolette brings a specialised perspective to the conversation. A seasoned science communicator and media commentator, Nicolette is passionate about improving access to high quality, affordable chronic pain management for all Australians, which, of course, includes kids. Welcome, Nicolette. We’re so excited to have you on Live & Learn.
Nicolette Ellis 01:51
Thank you so much, Megan and what an introduction, wow.
Megan Gilmour 01:56
All – all deserved! So, Nicolette, today, we’re here to talk about supporting school connections for students with complex medical and mental health conditions, and this takes us into our first question, which is to ask you to tell us how chronic pain impacts kids and why it’s something every Australian needs to know and care about.
Nicolette Ellis 02:23
It’s such an important topic, and one that is really at the heart of Chronic Pain Australia. For too many years, we’ve had so many parents and children coming to us telling us about their chronic pain experience and how supportive and unsupportive health care has been, and the same with the schooling system as well.
So chronic pain is pain, basically, that lasts for more than three to six months. That’s how we define chronic pain.
I was speaking to someone recently, and they said, ‘Oh, what’s chronic pain?’ And they had a lower back pain condition that had been going on for ages, and basically realising that chronic pain is an ongoing experience that completely changes the way that we process and experience pain altogether, and impacts all aspects of our life and our day to day living, and really causes a lot of mental health, relationship strain, financial strain, and impacts all the things that you love doing.
So, usually we think about chronic pain as this wear and tear on the body, and that it only affects older Australians, etc. And we’re really trying to change that information and making a concerted effort to get people to understand that this actually impacts all ages, it doesn’t discriminate.
And sadly, one in five children experience ongoing and persistent pain, and that’s the same statistics that we have in our adult population. And we need to be asking ourselves and really thinking about this disease differently and this condition and the way that it changes – how it really affects – our day-to-day life and the things that we love doing.
I don’t think as a parent, there could be anything worse than thinking about my child being in pain every day and living with that. That would just be a truly traumatic and awful experience as a parent as well.
Megan Gilmour 04:33
And well, this is why these conversations are so valuable, because we learn things that are just hidden in plain sight and that we just don’t realise. So, what a great intro to get every Australian understanding and knowing and needing to care about this issue. So many people probably assume things about chronic pain you’ve mentioned there as well.
What’s the million dollar question you get from parents or loved ones when their child or a young person in their life experiences or is diagnosed with this chronic pain issue?
Nicolette Ellis 05:17
Well, I guess, firstly, there is just no information out there for parents and for children. And I would say, I would extend that to health professionals as well. I know as I’m a registered pharmacist, when we went through pharmacy school, we got some information on pain, and it was cancer related pain, so nothing about chronic pain or what that condition is. And certainly, pediatric pain was not really a topic that was in a Bachelor of Pharmacy, and I know certainly across medical professions, chronic pain is sort of this invisible condition, that’s even invisible in the healthcare sector.
Megan Gilmour 06:00
Wow.
Nicolette Ellis 06:01
So there really needs to be a whole change of curriculum. You think about one in five people living with chronic pain. That’s 3.6 million Australians. We know it’s the leading cause of disability in Australia as well. However, it’s not recognised on the NDIS, so there’s all these, you know, cascade of issues around there. And for parents and children, it’s just even getting basic information about chronic pain.
And the most that we hear of people’s experiences is the extremely delayed diagnosis, so at least three years until they have received a diagnosis. And for conditions that I think maybe 10 years ago, we would have gone, oh, yeah, that’s pretty rare, but now I would expect that more health professionals would know a lot more about these different types of pain conditions.
It should be more understood that these pain conditions are out there in existence as well, and then there’s so much because of this, and invisibleness, and there’s not an easy pathology test that we can do, or MRI, or a scan that shows pain. So, because of this, a lot of the time they’re disbelieved, they’re stigmatised, and they’re sort of told it’s all in their head, which is not the case.
So, a lot of their navigation is around trying to find the health professional or the people that will help support them and unfortunately, a lot of parents are doing their own research and finding the answers for themselves, so we’re trying to help find those answers for them at Chronic Pain Australia as well.
Megan Gilmour 07:51
Yes. And I’m always blown away by the similarities between conditions, and I guess, what we could call these wicked problems or wicked invisibilities. So, it affirms, for me, that it’s just so important to have these conversations and bring these conversations out, and it’s also so important for organisations like Chronic Pain Australia and you and the good people working for this mission to actually get this on the agenda.
So, my next question is, given all of that, what is the most important thing that you want parents or loved ones of young people to know?
Nicolette Ellis 08:41
What we want them to know is they’re not alone, and they don’t need to do this in isolation. We, fortunately, through a lot of volunteer and now pro bono work, are launching Kids in Pain, which is a whole initiative that we’re going to build on, on an annual basis to bring more awareness, advocacy and attention, and ideally, some action to kids with chronic pain.
My vision for where pain management goes for children is that they are able to access localised pain management services that we know, the multidisciplinary gold standard of care in their local region. They don’t have to wait for a tertiary clinic or a hospital. We know there’s all those issues that are bound up with that, with wait times and location, etc. And in Australia, we only have six pediatric pain clinics, so if we have all of those children who are having an ongoing, persistent pain condition referred to those tertiary clinics, we’re going to not really change or curb the experience for children.
Get them, you know, active and participating in the things that they love doing, and then also ease and support those parents who are dealing with quite a lot, and also watching changes happen to their child which are not fun to watch or be part of or see them in pain. So that’s really where we would like there to be a lot of action and change, and then also action and change around supporting parents and children in the schooling system so that they are believed. They have a great education plan. They’re well supported by the school and also the healthcare team, and everyone’s working with them together, and, you know, living a great life despite having chronic pain.
Megan Gilmour 10:36
Yes, and the possibility that that’s possible, so I hear there that, yes, you want families to know that they’re not alone, and that also, the work that you’re doing in coalition with others is to address this issue at local levels to make a difference to quality of life and participation. So, I think that’s just so important.
So, Nicolette, we would also love to know what brought you into the world of chronic pain. We love these origin stories. And just to work out what’s the link here for you? Personally?
Nicolette Ellis 11:17
Yes, well, interestingly, I was an intern pharmacist, and I was wanting to do a project in my local community pharmacy that I was doing my internship with, and sort of debating what that would be and what that would look like. And my pharmacy owner said, “No, I want you to focus on pain, pain management, etc.”. And I really, I knew nothing, absolutely nothing. And one of the trends – so this was when codeine was still available over the counter, before it was up scheduled – and one of the things that I found was, you know, I was having conversations with people, and I’d be like, ah, doing the typical thing that you should never do: ‘Oh, have you done physiotherapy? Have you, you know, tried acupuncture or massage?’ Thinking that this is just like something that you could just fix overnight, and really not understanding that whole pathology. I think it speaks to, I guess, the education that we receive in pain management as well.
And so, I met this incredible pharmacist called Joyce McSwain, who kind of changed a lot of the way, especially pharmacists and health professionals, our education is around chronic pain management, and she’s quite an innovator, developed lots of different programs and runs localised multidisciplinary pain programs in local regions across Australia as well.
So, under her sort of tutoring and education and things, I’ve just started sort of expanding my knowledge and then developed a local multidisciplinary team in my region, and we all worked together collectively with people who had very severe and significant chronic pain conditions.
And a lot of those conversations that I had with them was just over the counter talking about codeine or Panadol, etc. and, you know, some incredible, amazing stories of resilience of people, and they just seriously had tried all different avenues, and had no real success with, you know, focusing on self-management and their pain management, and that’s because they didn’t have the information available to them or the support from health professionals to believe them. So that in itself is just a small part of, I guess, providing good pain management, but it’s such an essential part is that trust and that therapeutic alliance between yourself as a health professional and patients.
And so, then I kept working. I worked in Joyce’s programs, and I also started dating my now wife, and we have two wonderful little kids, and it was really interesting when we started dating, because then it is emotionally hard working in chronic pain management. You know, it’s people in probably the darkest times in their lives. So sometimes it is really that burnout and that, you know, the amount of compassion and empathy and holding all of those stories is sometimes really challenging as a health professional.
And then Kel, my wife, was having a really hard time personally with her chronic pain when we started dating. And that was really confronting for me. I was – sadly – I was like, “can I handle this as well, like in my profession” – and I was – like “I should be” – when I heard myself thinking that it was like, “I should be the best person to be here to help support”, and so I just really had to… yeah, it was a confronting thought.
But I think a lot of partners have that thought as well, like, can I actually handle this in my life, my personal life and help support them. And do I have that ability to do that? And being with Kel and seeing her go through what she went through really re-evaluated or validated for me, how hard, how goddamn hard it is living with chronic pain, trying to work, trying to function, and all of that anxiety that you feel in not letting people know that you’re not okay, as well, and hiding that part of yourself.
And then that just kind of was a real wake up call for me, and made me go, “yeah, I really want to dedicate my career, my life, to this”, because I just hear the same thing every time I work with a client, every time I have a conversation with someone at Chronic Pain Australia who’s challenged just trying to find help and support and the space that they’ve been through. And these are people who don’t want to be unwell, of course, they want to be active and participating, and that invisibility of the condition just makes it so hard for people to understand what you’re actually going through.
Megan Gilmour 16:32
Yes, such so much good stuff in there, the difference between the professionally lived experience and then the personal lived experience and the reflections around that also sort of throws up for me that a role to play for organisations like yours is to be able to provide the kinds of support and resources that might even help family members to understand what’s going on as well.
And the validation that you know, if you’re living with pain for anything over months and months and months, as you said, you know that mark where you say, well, this is not just acute pain, it’s gone into chronic pain.
How many times a day do you tell somebody you’re in pain, and then the next day, and then the next day? You know what I mean, it’s and that’s part of what chronic is? It is ongoing.
And I reflect on this, you know that my son’s journey with a bone marrow transplant brought me to the work at MissingSchool, and I remember my observation being that chronic nausea and chronic pain were two of the worst aspects of the journey, simply because the person can’t think about anything else, or if they are, it’s just alongside that.
So, I just applaud you once again, for bringing yourself to the work and for your humanity, and the reflection about the differences between a professional experience and a personal experience, and to be able to bring that to your organisation’s work and then out into the world is such an important aspect of it as well.
And because of the statistics that you’re talking about, we’ll know somebody with chronic pain, and we might not even know that they have it.
Nicolette Ellis 18:45
Yes, absolutely amazing.
Megan Gilmour 18:46
And they might not know they have it. Do you know what I mean? They haven’t framed that for themselves. You said this in your opening,
Nicolette Ellis 18:54
Exactly, yes, and I think it’s even embedded in our culture of being – you know – taking some concrete and hardening up, and all of the phrases that we use and pushing through, etc., etc. And I think what I’ve learnt from working with loads of people with chronic pain, is the worst question, the most loathed question that they have is being asked, ‘How are you?’ because they really don’t want to even have to explain how they’re feeling or how they’re going.
Megan Gilmour 19:29
And isn’t that just heartbreaking that it’s you know, not only is it invisible, you may not be believed, but then you also can’t answer honestly about how you’re going, and it says to me as well that – just thinking about how I say this, but the fact, that many people might not recognise that they’re experiencing chronic pain is one of those, well, how much pain is enough before it should be validated, as it doesn’t have to be this way.
Nicolette Ellis 19:29
Yes.
Megan Gilmour 19:29
And that’s a really kind of shocking way to look at it, and the way that it would be normalised, but because of the nature of it, could never actually be normalised at the same time.
So, knowing all that you know, what’s your biggest hope for kids who experience chronic pain, their families and loved ones, when they’re navigating this challenging – is the lightest word that you could use for it – journey?
Nicolette Ellis 20:43
Well, I would really hope that we’ve shored up our healthcare system to be better equipped to help support and manage children and parents, so that they’re not going through years of not receiving a diagnosis, and they’re not dismissed as sort of growing pains, and they are really validated and given the tools early. So, early intervention is probably a way that we could, in some ways, reduce the chronicity of chronic pain.
So, if we provide early intervention, so we kind of say it’s an acute pain condition, so there’s an injury etc., etc., and it’s likely in the next three to six months that that’s going to heal. And then there’s some acute [injuries] where it’s ‘okay, this is getting a bit longer than what’s expected to heal’, and then there’s chronic when we’re past that three to six months sort of threshold.
And if we can do early intervention, good self-management, pain management education, you know, skill up all of those support people around that child as well, the parents and carers. It’s so important to have someone who understands what chronic pain is, how to de-escalate when the pain is getting on top and becoming, you know, really difficult to manage and function. That would just make an incredible difference to people’s journeys all together.
And I think a huge amount needs to go into research. I’d love to see Australia as the number one nation who’s just, you know, exceeding and delivering on really good pain research that consumers actually want to see, not what researchers potentially want to see.
And interestingly, we run the National Pain Survey and National Pain Report on an annual basis. We’ve been doing this for last 10 years. We’ve always wanted to include children’s lived experiences in that, but we’ve had some ethics approval issues, but we’re still pushing and hope that we can launch that in 2025.
But what we see in our younger demographics, so 18 to 25, is there is this massive correlation between neurodiversity and chronic pain. And this is something anecdotally that we’ve seen with parents and children, and we think it’s an area that really needs to be well researched, because it also probably speaks to the pathology, and potentially, you know, some sort of intervention that could help reduce or dampen down pain signals as well.
So my hope is really robust research that goes into researching and funding chronic pain in a meaningful way for consumers; that we see new, you know, diagnostic tools that give earlier diagnosis, new sorts of medications, like, there’s no medications that have been coming through the pipeline for a very long time in chronic pain; and then the establishment of those localised pain management programs by multidisciplinary teams who actually understand the unique needs of children, because children are not mini adults, and they have developmental, social education needs that all need to be really thought through and in correlation and in conjunction with their schooling system and education system. So that sort of all needs to be pieced together with the parent and the carers and the whole world, basically.
Megan Gilmour 24:28
Yes, that’s just such a great summation there, and as a change maker, I just I look at this and I see you know why it’s so important for organisations like Chronic Pain Australia to exist because it’s not a centralised problem. It’s taking place in households all around Australia, indeed, the world, but those people in that experience, along with all of the other things they’re dealing with in their life, don’t have the agency to build a mission around getting this issue solved, even if they can see it that way.
So, you can see, you know, you’ve named a number of things there across this conversation that signal all the ways that this is not being managed. You know, it’s not in university degrees for health professionals. You know, there’s no drugs, there’s no new drugs on the market. You know, there’s a whole range of pointers to the fact that it is a hidden issue that is in desperate need of change and attention.
So back to misconceptions. You’ve mentioned a few, but this might be a great opportunity to just sort of wrap that part of it up. What are some of the common and perhaps frustrating public misconceptions about chronic pain so people just out in the world in their everyday business, in their everyday work lives, school lives, and how have you seen these misconceptions impact families?
Nicolette Ellis 26:09
Yes, I think the one point that is the biggest to me is that idea that you have pain as you get old and from wear and tear, and, you know, being a brickie or something like that. And it’s usually an opening line that happens when I’m getting a radio interview. And I always take the opportunity to sort of re-educate and give some information that as many children are experiencing chronic pain as adults in Australia.
So, it’s not an older person’s condition whatsoever. I think chronic pain is probably sometimes not associated with the condition that you’ve been diagnosed with, okay, it’s “I’ve got a lower back pain problem”, or “I’ve got endometriosis”, or you’re having treatment for cancer, but you’re having ongoing pain. So, people’s understanding of chronic pain, we really need to expand upon that, and also understand the latest neuroscience of chronic pain, that it’s not this simple, you know, taking a medication or painkillers, blocking the pain. It is really a whole change to the nervous system and the immune system, which actually starts to amplify pain signals and freeze pain. So, our pain perception has completely changed.
So, there’s so much in that, particularly for children, the things about pain being dismissed or maybe in their head or a reason for they don’t want to attend school, so they’re just saying that they’re in pain, really, really frustrate me.
Megan Gilmour 27:59
Me too.
Nicolette Ellis 27:59
And the diagnosis of, you know, “it’s just growing pains”…If your child is experiencing pain for more than three to six months, it’s impacting their quality of life, their day to day. You know, you need to get the right health professional in that space and talk to them about that, in that way, “but this is not growing pains, I know my child”. Most parents are going to be the biggest advocate for their child in that space, but for them, maybe they haven’t even heard of chronic pain, so it’s really, really challenging and hard to navigate themselves.
Megan Gilmour 28:32
Yes, that diagnosis might be delayed, as you said. It’s really interesting hearing you say that the psychology of pain, I guess, can play a role in amplifying the pain, which, if we think about it, makes sense, because the body’s job is to tell us to resolve something that’s not in homeostasis, right? So, it’s the experience of it is going to become more acute.
Nicolette Ellis 29:08
The panic, not having the diagnosis, not knowing what this would it be, something really, really bad. “Could I have…?”, you know, all of these things that come into your mind, this pain feels different to what it used to be. And, you know, and that helps to amplify pain as well, Because it’s our stress response and cortisol.
Megan Gilmour 29:29
Yes, exactly, and the anxiety that’s associated with if I go there, or if I do this, and what if? What if the pain amplifies, what if? So, the fear around the pain, a fear around the experience of it in certain situations and how you’re going to cope. So, the anxiety about the anxiety, or about the pain as well. So, there’s this loop there.
And I think the other thing I want to point out about what you shared in answer to that question is, there could be so many reasons for chronic pain, right? And so, where that underlying original reason for that is still there, i.e. a chronic illness, a chronic condition, or even an acute injury or acute condition, the person’s already dealing with that and everything that’s associated with that as well, including ongoing treatment for that.
So, you can just kind of step back and look at that and say, how much of an impact it would have, not just on mental health, but on relationships, on participation in things you love, as you pointed out earlier. And yes, it’s just, it’s complex, really complex.
Nicolette Ellis 30:55
And anyone who’s living with pain will tell you there’s nothing in their life that’s not impacted by it. It impacts every aspect.
Megan Gilmour 31:02
Yes, ever present. Yes. So, prevalence: You mentioned this earlier, but it’s worth repeating here. How many Australian children and youth are living with chronic pain right now?
Nicolette Ellis 31:18
So, there’s a really large international study that revalidated the statistics that we have. So, it’s about one in five children. In Australia, if we base it on a number, we don’t have good data collection in this space, not even for the adults, so we roughly estimate chronic pain usually impacts ages seven to 17 in our children population, that’s where we usually see it start happening, and that’s roughly about 500,000 to 800,000 children in Australia who have a chronic pain condition.
Megan Gilmour 31:56
Wow.
Nicolette Ellis 31:57
Other stats are one and two in each classroom, so pretty highly prevalent. And, you know, I was looking through a Ronald McDonald’s brochure book about all the different types of conditions that affect children, and chronic pain wasn’t in there, which is kind of unbelievable that it’s still this really unknown, invisible stat.
Megan Gilmour 32:18
Yes, and it gets swept up under other conditions, as if it’s sort of part of those, when I believe what you’re saying is that it’s worthy of treatment in its own right, and that’s what’s not being seen as well.
So yes, you could have chronic pain as a consequence of cancer treatments and cancer itself and a range of other conditions, but it’s sort of not being looked at as separate to that.
And you know, I’ve also heard that its chronicity means that even after the original diagnosis, or where there is a case of cure for the original condition, an ongoing or flow on effect could still be chronic pain for years later.
So, that’s really the main consuming life factor. And when you mentioned a number of potential children in each class and those statistics, I also think about how chronic pain might affect a child’s behavior as well.
Nicolette Ellis 33:36
Yes, so it certainly, I think, is a really – we call it the vicious cycle of chronic pain. So, you’re experiencing ongoing pain, you reduce in function or the things that you love doing. Things aren’t getting better. It’s probably going through all this misdiagnosis. This is causing anxiety, changes to your self-esteem. We know with adults 1 in 2 leave the workforce because of their pain conditions.
So, you can think, how does that apply to children? We know they miss school on average one day per week a term. And then trying to participate and continue doing the things that you’re doing with all of this hanging over, you would absolutely impact, you know, the way that they can even be present in their school and take in information, do their assignments, the tasks that they’re supposed to be doing.
Megan Gilmour 34:40
Even play.
Nicolette Ellis 34:42
Yes, play. And be concerned about, you know, “am I going to cause a flare up in doing this, or am I going to have a bad day or a good day”? And with all of that anxiety, they probably don’t want – a lot of the time – their peers to know what’s going on, or their teachers, and they don’t want to have those conversations, because it is also overwhelming and all encompassing, and particularly if they don’t have a diagnosis or something to call it, which is the majority of the cases.
So, it really does impact their really important developmental needs, their education, their social interactions. And it’s so multi layered and really complex to sort of peel back to see how much it really impacts. But we know it impacts every aspect.
Megan Gilmour 35:34
Yes, indeed, and you mentioned, you know, training in health and allied health professionals and the absence of that, and either in early career training or undergraduate degrees. But then it sounds like that information and training isn’t present in professional settings as well, and so I think we can just right now, and we’ll go into this more in a moment, but say that would also have to be true of teachers and people working in schools as well, as this is not something that teachers would readily be equipped to know about and deal with.
My next question was going to go to is there a risk of delayed diagnosis? I think you’ve already spoken to that one, so I’ll just point back to those earlier comments you made on that, and just turn to the question of what kind of complications, then, do kids with chronic pain face? And I know you’ve touched on this too, but it’d be worth wrapping that up in this question.
Nicolette Ellis 36:47
Yes, the complications are really far reaching, I guess, and a lot of it would be around, okay, being faced with trying to get treatment and diagnosis from health professionals that understand and know how to treat and manage the condition, and then the challenges of even maintaining that schooling system.
And it’s not just about education, it’s about their connection with their peers, that social support. And these are all things that help to improve our own pain relievers in our brain, that help to reduce pain signals. And so, you can see how the vicious cycle sort of, kind of all come into play and actually not help to support the patient or the person and actually make them feel more isolated, more vulnerable, more pain.
And so that those core developmental needs for the child, their social, emotional needs, and then just even their identity, they’re trying to build their identity. And then their identity is becoming pain. It’s an awful place to be in. And then parents trying to sort of hold all of that, and navigate and help support them, and get answers and move them forward.
Megan Gilmour 38:07
Yes, and the fact that caregivers also may be experiencing chronic pain themselves in some circumstances, but if not, the stressors associated with caring for a person with chronic pain and the mental health impacts that that has on caregivers as well. You mentioned earlier, the experience of being the partner of somebody who experiences chronic pain. So, I think those are worth noting.
And I also want to pick up on what you said about the role of social connection. It’s something we haven’t sort of shed a light on. The fact that the neurotransmitters associated with social connection, and I’m guessing serotonin is in there somewhere, the role that those neurotransmitters once stimulated by environmental supports and things –
a role that they play in a person’s health experience, no matter what that health experience is. And why community connection and social connection and emotional connection, as opposed to isolation in that tough place, are just so important. And not just superficially important, they’re actually playing a role in our neurobiology, and our brain development and our cognitive experience in a much deeper way than people might assume. So that’s super important.
Nicolette Ellis 39:59
Yes.
Megan Gilmour 40:00
How about siblings and peers of kids with chronic pain? Is there something there we need to touch on?
Nicolette Ellis 40:09
Yes, it’s a really interesting one, and I think it’s probably one unfortunately that – we always talk about the parents and the child with pain – and we sometimes don’t pay tribute enough to the siblings and what they’re going through.
And there’s, to my knowledge, there’s not something that specifically looks at chronic pain and the siblings, but there are chronic diseases and siblings where we see higher rates of anxiety, depression, feelings of worry for their sibling, and also social issues themselves. And I think for many – you know the parents are holding a lot in that space as well – for many they can see the anxiety for their parents, which is a distressing point for a sibling.
But interestingly, one of the pain pediatricians that works with Chronic Pain Australia in this space, was saying that the more siblings the child with pain has, the more resilient they usually tend to be, and that’s because they usually pick up different types, different ways that their siblings are resilient in that, you know, they learn from their sibling’s different strategies or aspects of resilience as well.
So there’s a really nice, I think, component of having those siblings, and I think there’s so much power, and what you were saying about that social connection part of things, when you have a family who really understands that this person in our family has challenges with pain, and we validate them, we show them compassion, and that, in itself, has been shown in MRI scans to increase endorphins and enkephalin, serotonin, all of the feel good hormones that help to reduce pain.
So, if we can just do that as a society and a community, teachers, health professionals validate people’s pain, pain experience. Let them know that you know, and you believe it is real, what they’re experiencing. That in itself is such a powerful pain management tool, just being believed, being validated, and someone showing compassion.
Megan Gilmour 42:28
Wow, that is profound. And I think this comes back to peers as well. So, when you were mentioning the evidence around a larger number of siblings in the family and the modeling of resilience, I see that for peers in the classroom as well for a young person being able to join in a safe way and the role – and we see this across our evidence as well – the role that peers play, in hope, in belonging, in connection, in validation about the circumstances of the person who’s in that isolating experience of a chronic condition.
So, I think this is just so rich what we’re talking about here, and some really important points of difference coming out in this conversation that are – I want to point out to our team here to think about and listen to and pick up – in the way that we talk about people around the person. It’s not just superficial on the outside, it’s actually changing the brain.
And that, to me, is part of resilience, right? It’s the brain changes that take place in terms of being able to practice resilience, not just be told to be tough, you know, that’s a different thing.
So, let’s jump into the school stuff, and you’ve answered some of it. So, if you just want to, you know, re-assert what you said earlier, that’s fine, too. So, what’s the current population of school-aged children? So, we talked about kids with chronic pain, so school age children, you said seven to 17. And how accurate is this number? Is the data tracked, for example?
Nicolette Ellis 44:38
Yes, we don’t have great data on it, and we should really invest in better data. And even when I think about the census data for adults, it’s not an accurate depiction of how many people are living with chronic pain, because they only ask about musculoskeletal conditions. So, if you’re asking about, you know, fibromyalgia or endometriosis, or, you know, there’s over, I think, 300 types of chronic pain conditions.
So, we really need some good quality data on this. And if anything, we think it’s under reported, probably where we’re sitting. But roughly what we can say of children of the age between seven and 17 is when we see chronic pain conditions start and persist. And that about one in five of those people will have a chronic pain condition, and that’s roughly between – what we estimate – 500,000 to 800,000 children in Australia.
Megan Gilmour 45:40
That’s got to open some minds that right there. Yes, and I’ve been working in this, as you might know, for quite some time, but I’m learning something – so many new things – on these calls, and just with the absence of data across the board and like everyone else on these calls, you’re reporting this absence of data in this condition.
Once we start adding these numbers together, and we don’t know the overlaps of conditions and things like that, the numbers are just huge, and I agree with you, I think we’re underestimating the number of kids who are missing school and experiencing a chronic health condition.
And I also just want to, without going into it, point back to the fact that there is some research around non neurotypical and chronic pain, I think that that’s worth just dropping in here again, and that that’s going to come up for further research and investigation, which is super important, and how much school do kids with chronic pain currently miss? I think we need to just mention that one again.
Nicolette Ellis 47:03
Yes, it’s pretty shocking. So 22% of their schooling years are missed, which is about one day a week from each term, which is a significant amount of school lost, a significant amount of disruption, significant amount of emotional stress and distress, thinking about even how that’s managed, how we help plug the gaps, I guess that family and that child, on top of trying to live with a pain condition that generally is very severe and debilitating.
Megan Gilmour 47:39
Yes, in itself. And so, we know from the research that there’s no safe threshold for absence, and anything more than 10% of school missed will have ramifications across all future school years. So, it has a compounding and cumulative effect. And you’re saying 22%, so I think we can safely say that that’s well over the threshold. And we don’t need to go into the details that are associated with that, i.e., typically one family member, usually a mother, according to our data, needing to either give up work or miss large amounts of paid work, and all of the things associated with that. So, it’s a significant issue.
Critical times in a kid’s life with chronic pain, are there any particular times that stand out?
Nicolette Ellis 48:48
I think all of it is critical in their life. But what I would be having some sort of urgency around it – in relation to – if you’re seeing your child starting to experience pain, and it’s been going on for more than three to six months, and you’re not getting further information, or you’re being dismissed, or being told these things, that to me is – some urgency needs to be built around that.
And notoriously, most children with chronic pain and most adults with chronic pain, it’s not the only chronic disease that they live with, as well. So, it’s a complex and challenging space, but I think if you’re not getting answers within that three to six months, you really need to be moving around, changing, contacting Chronic Pain Australia, MissingSchool, other sort of organisations to try and get some answers or support, or they might even be able to help you with navigation in that space as well. So, but all of it is, is critical, right?
Megan Gilmour 50:05
Yes
Nicolette Ellis 50:07
I don’t think there’s a year or a time that you could put on what’s critical in a child’s life. And we know children with chronic pain, as adults, you know, there’s lots of disadvantages for them if they haven’t had the right environment, right supports and self-management in place for them.
Megan Gilmour 50:28
Yes, I was going to ask, what should families and schools be prepared for at different times? But I think you’ve covered that. If there’s anything else you want to add to that there. We’re sort of down to the last few questions here.
Nicolette Ellis 50:42
I learned a lot from MissingSchool, which is around the how you absolutely are acknowledged under the Disability Act [Disability Standards for Education], that chronic pain is a condition that is recognised, and that if your child is needing changes to the way that their education is being delivered, then they absolutely have that right, and they do not need a diagnosis to access that right either. And that, to me, is such valuable information for any parent who’s navigating this space, because, you know, one of the problems we have with the adult population is that they’re not recognised under the NDIS. So chronic pain, despite it being the leading cause of disability, is not a recognised condition that’s covered under the NDIS.
Megan Gilmour 51:31
Yes, and we see this with a lot of conditions. Unless you can prove that it’s permanent. There are a few tests, but that’s one of them. And yes, I think you’re absolutely right here. There are ways that people with chronic pain, children with chronic pain, are falling through all the gaps.
But yes, the Disability Standards for Education is a really powerful regulation that applies to every school in Australia, regardless of state or territory or school age or school type. And, so, the provisions of the Disability Standards would enable continued connection to the school, continued connection to the curriculum and to specialised supports, including adjustments that would provide additional time, or differences in the way assessments are implemented. Even physical changes in the school that are sensible and reasonable can be made. And there’s quite a lot of things that can be done within the remit of that regulation. So yes, it’s a really important one to remember.
We talked about the biggest challenges and vulnerabilities, as we sort of round out, at the end of our call here, what do you see that’s happening now to address this challenge, if anything, and is it enough? So, we could sort of capture in here what is there and what is palpably missing that schools and governments currently don’t know or aren’t dealing with.
Nicolette Ellis 53:34
I think there’s a lot of things that are missing, data being one of them, and I hope through the work of Chronic Pain Australia, we’re going to fundamentally change that. So, the Kids in Pain, going from September 23 to the 29th is really the first staple event that we’re putting on an annual calendar to get people focused on this condition and how it’s impacting children and their parents and their family.
So, I think that piece is really needed, that advocacy, awareness, information and building resources for parents so that they’re not left thinking “I must be the only parent dealing with this”, because there are so many who are dealing with it.
And then that gives us a platform and information to then drive policy changes to the government to ask for things to be more invested into this space for children, because they need to know what the problem is, and at the moment, we can’t even put a neat figure on how many children are experiencing this at the moment, and that’s just got to change fundamentally.
And then, again, it helps us have more of a platform to be driving research services to this very, very needed, vulnerable community who needs that support and needs that advocacy on their behalf as well.
Megan Gilmour 55:12
Yes, indeed. And our national MissingSchool’s National Insights for Education Directories [www.missingschool.org.au/resources/national-insights-for-education-directories] and the alliances that we’re creating through these conversations, where each of us go about our daily mission and do what we do, and are able to come together and agree on what this means for school.
We hope that in time, we could have a sort of baseline of things that happen for people with children with chronic conditions in school, and that those provisions are provided to everyone, and then these organisations like yourselves can provide that detailed information and resources on this particular, chronic pain condition – situation – circumstances, so that teachers, just as a matter of business as usual, know what to do. And that’s, that’s sort of our goal through the directories currently.
As we wrap up, is there anything else we should be asking about school, quality of life, for chronic pain? And I recall us talking about this one, so I might just drop it in. You know, what if school, as we know it, doesn’t work? So that was one you mentioned to me, but I shouldn’t be providing the answers. It’s you. So, anything else that we should be asking about school, quality of life, for chronic pain?
Nicolette Ellis 56:51
Yes, so there’s some parents who find it triggering, and I absolutely appreciate why it’s triggering to be told the best thing that you can do is try to keep your child in school. And I guess that’s just a very individual question or individual challenge, because sometimes the mainstream schooling system is just not set up to support those children, and maybe it’s more traumatic for them to be in that schooling system.
Maybe there’s other layers, like bullying and all kinds of things that can come into this that just make the environment not set up for success, and despite the parent’s effort, can be, you know, the hardest call that they they’re going to have to make. They’re not making these calls lightly that they need to maybe homeschool or pull their child out of schooling and then find a suitable alternative.
So I really want to highlight that that’s sometimes an experience of parents, and sometimes they’re not finding the right supports within the schooling system as well, because it’s a really important thing to validate that this is the experience of quite a few of the parents that we’ve been working with in bringing Kids in Pain to life, and that comes to more of a call that we need to be doing more actively in schools and educating teachers that this is not a made up condition. It’s a real condition, and they’re not trying to get out of school, and they need support and validation and compassion.
So I think that’s a really important aspect, but ideally, I would hope that most parents are not in that position where they’re having to be so exhausted and advocate for their rights of their children, that they’re in a schooling system that has that support, compassion, education, and happy to work in with a plan that meets the needs of what they need, because a lot of the time they’ll need a flexible sort of schooling arrangement.
The last thing that we want children to do, and the last thing that you’d ever want anyone to do who’s in chronic pain is push through and push through the pain. They need a paced regime. They need things planned out, and they need things to be adaptable, if it’s a bad day or a good day, and to be able to change the plan around as well. So that flexible schooling arrangement is, I think, essential for a lot of children who are experiencing pain.
Megan Gilmour 59:34
Yes. Really great wrap up there, and one of the keywords that came out there was trauma. So, when we don’t deal with things like this well, and we’re not trained and we don’t understand the lived experience, or at least have a perspective on what that might be, trauma can occur on top of just the trauma associated with the condition or the chronic pain itself, and then the outside world can continue to re-traumatise for not believing or not providing supports, or not having empathy or whatever those things are. So I wanted to pick up trauma as part of this as well.
So, in closing, it’s been such a great conversation. Nicolette, what’s your call to action for chronic pain in seven words or less?
Nicolette Ellis 1:00:36
Head over to www.kidsinpain.org.au, join us for ‘Kids in Pain’ [www.chronicpainaustralia.org.au/kids-in-pain] if your child is experiencing pain, as a parent, and we’ve got lots of support available as well, so, you don’t need to do this in isolation. That’s my call to action. Don’t do this in isolation. Join a community like Chronic Pain Australia, or MissingSchool – find your people and that support goes a long way, and just being heard and validated
Megan Gilmour 1:01:07
Yes, absolutely. And a big shout out to Chronic Pain Australia. You can find Chronic Pain Australia at www.chronicpainaustralia.org.au [https://chronicpainaustralia.org.au/].
Thank you for joining me today, Nicolette. It’s been an amazing conversation, and we’re so delighted to be able to share this journey with you and Chronic Pain Australia, in some way.
Nicolette Ellis 1:01:37
Wonderful, thank you so much Megan and MissingSchool, you do a fabulous job in supporting and advocating for parents and children. So, thank you.
Megan Gilmour 1:01:46
That’s our absolute pleasure.
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 www.missingschool.org.au [https://missingschool.org.au/], because every dollar makes a difference.
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