RECORDED Thu 19 October 2023
SUMMARY KEYWORDS
child, school, families, heart disease, heart, kids, health conditions, support, siblings, education, surgery, CHD (congenital heart disease), prevalence, childhood onset
SPEAKERS: Megan Gilmour, Lesley Jordan
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG telecom foundation dedicated to creating opportunities to improve the health wellbeing and education of Australian communities in need.
Hi, I’m Megan Gilmour, MissingSchool co-founder and CEO. And this is Live & Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening.
Megan Gilmour 00:44
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 conditions.
With us today we have CEO of HeartKids, Lesley Jordan. I’m just going to introduce Lesley, a passionate child health and wellbeing advocate. Lesley started her career as a nurse and midwife before stepping into high level executive roles across Australia’s health and social service sectors, and Lesley was appointed HeartKids CEO in January of 2023.
As the mother of a child diagnosed with a complex health challenge of a neural tube defect, Lesley brings lived experience and empathy to Australia’s only national, not for profit, supporting families impacted by congenital or childhood onset heart disease. Welcome, Lesley.
Lesley Jordan 01:44
Thanks, Megan. Great to be here.
Megan Gilmour 01:48
Thank you, we’re so excited to have you on the very first episode of Live & Learn. And this is a really special moment for us to mark a transition for MissingSchool into part of our new services. And that is about sharing information, insights, to support school connections for students for kids with complex medical and mental health conditions.
So, you and I have had lots of conversations lately, and it’s really a great honor to get to talk with you today and hear what you know about heart kids. So, we will kick off with our first question, which is, tell us how heart disease impacts kids and why it’s something every Australian needs to know and care about.
Lesley Jordan 02:42
Thanks, Megan. And we’re really happy to be joining you in this initial start of your journey as well. Childhood onset heart disease impacts 1 in 100 children across Australia. So that’s eight children born every day, nationally. And whilst there are many different types of heart disease, the overall prevalence is underestimated. So that’s why for us, it’s really important that every Australian understands how common it is, and hopefully, through today’s podcast, understands a little bit more about the impacts that it actually has on the individual and the family’s lives.
Megan Gilmour 03:23
Wow, I expect to learn so much, and we’ve kicked off right there with understanding the prevalence and how many people are affected if we count, not only the children, the kids themselves, but everyone who’s involved in their life.
Lesley Jordan 03:44
Correct. Absolutely.
Megan Gilmour 03:46
Now, many people probably assume that heart disease happens later in life, where our picture of that is often in older people. So, what’s the million-dollar question that you get from parents or loved ones when their child becomes a heart kid?
Lesley Jordan 04:09
So, the first question that we always get is, “What did I do wrong”? There’s a lot of, I suppose, guilt, shame, in terms of parents trying to understand and find a reason for why they’ve got a child with a congenital heart disease or a childhood onset heart disease. The next question is, “Will it happen again?” So, they’re probably the two big questions which result in a lot of grief for families.
Megan Gilmour 04:43
Yes, it really hit a nerve with me right there – because this journey that I’m on with MissingSchool started with my own child’s serious illness, I suppose a critical illness – and you’re right, that’s the question: “What did I do to cause this?”, “What could I have done to stop it?”, “Is it my fault?”
Lesley Jordan 05:10
Yes.
Megan Gilmour 05:11
And that really sets the scene for what families go through. So, what’s the most important thing that you want them to know?
Lesley Jordan 05:25
Yes, thanks. Look, the first thing is that they’re not alone, and that there’s always hope. And what we would always encourage our families, particularly at the early outset, is really to engage with their treating cardiologist and talk and understand, one, about what their child’s specific condition is, what it looks like, the likelihood of reoccurrence in subsequent pregnancies, and gather as much information clinically about their child’s diagnosis in the first instance. And then the other really important thing for us is that HeartKids is there to support them through that journey.
Megan Gilmour 06:04
Yes, and it’s such an important thing to have that moral support, but also the services that organisations like yours offer at a time of such uncertainty. And I think the burning question for me around this as well – because I love personal stories so much – is what brought you into the world of HeartKids Lesley, why are you there?
Lesley Jordan 06:36
Thanks, Megan. Good question. I was originally approached towards the end of 2022, as an interim executive to come in and sit in as an interim CEO for HeartKids. Once I came in and started within the organisation, obviously, my knowledge of the healthcare system, having been a nurse and a midwife, and worked in that sector for many years, coupled with my extensive executive experience, were well placed to ensure that I was able to do the job. But then obviously, my personal desire to work in an area where I make a difference and actually make a positive change to people’s lives, and the fact that it was around children was absolutely another bonus. So, you know, for me, the job was perfect.
Megan Gilmour 07:33
Yes. And in your nursing career, did you encounter any heart kids in terms of treatment?
Lesley Jordan 07:44
On reflection, of course, one in a 100, and then the number of babies you deliver over your span as a midwife and then also working in special care nurseries, of course, over the years we’ve had exposure to children with heart disease.
Megan Gilmour 08:02
Oh, wow, what a sort of wonderful moment to see that you’ve gone from that, primary care through to being on the other side of it, where you can provide all sorts of supports, and really shift the dial in terms of how we, as a society, treat and look after these families and kids. And, hopefully, one day find cures and all that good stuff.
So, knowing all that you know, and bringing your experience to it, Lesley, what’s your biggest hope for heart kids and their families and loved ones when navigating this condition?
Lesley Jordan 08:49
Thanks. Look, I think for us, the biggest and most important thing would be that they receive timely information and support to enable them, one to have hope, and successfully navigate the CHD (congenital heart disease) journey for them, however that might look. Because for everyone, it’s very, very different. And ultimately, for the individual with CHD to live their best life.
Megan Gilmour 09:11
Yes, indeed. And just for clarification, we’re talking about a lifelong condition here, is that right?
Lesley Jordan 09:18
Absolutely. So, whilst children may have surgery, they’ve still got congenital heart disease or childhood onset heart disease, that is with them for life? Absolutely.
Megan Gilmour 09:31
Right. Wow, okay, it’s so important – as we get into it – to have all aspects covered. So, I imagine that there are some misconceptions, as there are with all situations and medical conditions, especially where there’s greater levels of complexity, and where people aren’t coming into contact with them as regularly as, I guess, the garden variety or every-day illnesses. What are some of the misconceptions out there? Or what do people just not get about congenital or childhood onset heart disease? And how have you seen those misconceptions impact families?
Lesley Jordan 10:23
The biggest frustration for us is that people have a misconception that once a child has surgery, they’re fixed. And childhood onset heart disease, whilst it might come to light as they’re a child, it’s with them for life. So even though they may have surgery, even though the mechanics of the heart might be repaired, the impacts on that child, the impacts on that family are lifelong and many and varied, depending on the severity of the child’s diagnosis.
Megan Gilmour 10:57
Yes.
Lesley Jordan 10:58
So that has a significant impact also for us as an organisation, with engaging corporates and things like that, having money for these families isn’t just a one off, and then they’re fixed and off you go home. The demand, and the need for support is ongoing for a long, long, long time. And so again, with one in 100 babies born, eight babies every day, that’s potentially eight new families every day wanting support from HeartKids.
Megan Gilmour 11:33
Wow. Yes. And I guess, after that sort of initial, as you say moment of surgery, and as these children grow and get older, I guess we could say it’s almost an invisible illness.
Lesley Jordan 11:51
Absolutely, it is, and that’s one of the things we’ll talk about a little bit later. Yes.
Megan Gilmour 11:57
So, you’ve already mentioned this, but let’s do it for emphasis, how many Australian children and youth are living with heart disease right now?
Lesley Jordan 12:06
So, if we use the one in a 100 statistic, and we extrapolate that using 2020 ABS (Australian Bureau of Statistics) stats, we’re looking at around 60,000 to 70,000, children and youth across Australia, with CHD at on any given day.
Megan Gilmour 12:27
Wow. And, and so it’s fair to say that many of us would know a heart kid but might not know that they are heart kids.
Lesley Jordan 12:35
Absolutely correct, correct. Yes.
Megan Gilmour 12:39
And is there a risk of delayed diagnosis or are most cases picked up early?
Lesley Jordan 12:45
Look, in an ideal world, all CHD would be picked up antenatally, which would not only give the family time to prepare and be organised and engage with cardiologists in a considered way. The reality is, depending on the type and severity, diagnosis can occur at any time.
So, we do pick up some antenatally, particularly at the 16th to 18th week scan. You have another tranche where it’s picked up at birth, so you might have a baby that’s a bit of a failure to thrive at birth, and then they’re subsequently diagnosed with a heart condition.
And then over the next however many years, there’s no sort of golden standard and, and often, too, you might have people not diagnosed until they’re adults, but they’ve actually been born with this heart condition, but it hasn’t had as significant an impact on their life until they get to a certain age. So again, there’s a whole span of severity from the very mild to the quite severe.
Megan Gilmour 14:00
Yes. And are there other complications that heart kids face beyond that, initial onset, or diagnosis.
Lesley Jordan 14:15
Yes, absolutely. So just coming back to the fact that there are multiple types of childhood onset heart disease, and again, varying severities. And you will also have a proportion of children who will have comorbidity, so they’ll have other health conditions that are impacting on their lives as well, in addition to their congenital heart disease. So, it can be quite complex. And, again, it’s, for us very much an individual journey.
Megan Gilmour 14:54
I was going to say not a one size fits all.
Lesley Jordan 14:56
No, absolutely.
Megan Gilmour 14:57
In our work at MissingSchool and across the range of health conditions that we encounter in the students that we support, there’s often the case that there’s comorbidities and some of those comorbidities have to do with mental health or mental illness. Do you see that, in the mental health space, with heart kids, as a comorbidity as well?
Lesley Jordan 15:28
Yes, so the answer is yes. We see a lot more anxiety in our heart kids. And we also see particularly in those teen years, some mental health issues start to emerge. So, what we tend to do is we partner with Headspace for our teen camps. And they’ll often come along and spend a lot of time with our teens helping them navigate that as well. But yes, absolutely anxiety and mental health are big issues for heart kids as well.
Megan Gilmour 15:56
Yes, and this is really important to draw out, because often, that’s also a part of the invisibility happening there. We need to acknowledge it and address it, and it’s great to hear that you’re in partnerships to make sure that no stone is left unturned in terms of the support that can be offered.
I’m also curious – and this might be a conversation for another time – but even though it could be quite an early onset, as you said (at birth), and yet we could still see that prevalence of mental health issues and anxiety emerging later on in the journey.
Lesley Jordan 16:39
The other thing that we see is in young infants who have surgery or spend a lot of time particularly in those first 12 months, two years of life in hospital, they sometimes miss some of their developmental milestones. So, they have a level of neuro development delay.
So that’s the other thing that we’ve been doing is actually doing some Better Tomorrow’s early intervention programs for those children at the ages of three and four, to address some of those developmental milestones, so, that by the time they actually start school, they’re back at parity with their peers.
Megan Gilmour 17:19
Amazing. So, it’s multifaceted, isn’t it?
Lesley Jordan 17:24
Absolutely
Megan Gilmour 17:25
And we’ll be getting into the school discussion in a moment. You did mention siblings, and at MissingSchool we don’t want to forget siblings, and we hear from families the effects that siblings have, or the effects that occur for siblings, or the experiences that occur for siblings, when their brother or sister has a complex health condition or related issues to that. Do you have particular perspectives to share about the siblings of heart kids, and what that looks like?
Lesley Jordan 18:12
Yes, at HeartKids, we support the heart kid, but we also support the extended family as well. And one of the things that we often see in siblings is increased anxiety – now that can stem from them being concerned about their brother or sister and their impending surgery or hospitalisation.
But it also can be a result of the sibling often being cared for by other family or friends, whilst the parents are supporting the individual heart kid whilst they access care and surgery and hospitalisation. And that particularly for our regional remote families can mean that those families are separated for long periods of time, which can create a level of anxiety.
Depending on the age and maturity of the individual, they may not always be able to understand or navigate their feelings at that time as well, which also adds to another level of complexity for families to have to deal with and can often result in behaviors where that sibling will act out in order to get love, get attention from their family. So, it can be quite all encompassing for families really, in that space.
Megan Gilmour 19:38
Yes, indeed. And just, once again, it’s so important to have these conversations. This is a feature that we see across the chronic sort of health issues or complex health issues landscape. And it is unfortunate that siblings are often overlooked inadvertently in this whole situation of families, in what we call ‘management fatigue’ around the young person with the health condition. So, yes, we’d love to shed light on that as well, so thank you for sharing your experiences and what you’re doing to support siblings.
Now we get to talk about school, Lesley. So, we’ve heard from you about the prevalence, and we’ve translated that into numbers of students – or children rather – across Australia, in this setting,
Megan Gilmour 20:49
What’s the current population of school aged children then with heart disease?
Lesley Jordan 20:55
Yes, so look, again, in the absence of any real defined numbers, we know that one in 100 children have a congenital heart disease. If we extrapolate that across the school population, in any reasonable sized school, you can guess roughly how many children within that school setting would have a heart disease. If we use 2020, ABS stats, we know that there were around 40,000 children with CHD attending school on any given day. So yes, it’s quite a large, quite a large number. And as I said, more prevalent than what people, I think, appreciate.
Megan Gilmour 21:39
Yes, absolutely. We use the ABS stats as well, in the absence of accurate data about chronic health conditions, indeed, to know how many school students (so, school-age kids with different illnesses) and how many of them miss a lot of school. The translation into an actual school is – if you say 40,000 nationally – in a school of 200 kids, you’re saying at least two kids in that school, will be heart kids.
Lesley Jordan 21:35
Alright. Yes…
Lesley Jordan
And in a high school with 2000 kids that’s 20 kids, so big numbers.
Megan Gilmour 22:27
Exactly. And, often, and I don’t know if this is true for heart kids, but, often in those high school years, too (and it’s fair enough), where young people are reluctant to disclose medical or health conditions or mental health conditions, that visibility is not there. And that person’s experience is not necessarily understood.
Lesley Jordan 22:12
Right.
Megan Gilmour 22:57
So, do heart kids currently, well, in the current setting and time we’re in now, do heart kids miss a lot of school? Are they away a lot?
Lesley Jordan 23:10
Yes, they are away a lot.
Lesley Jordan 23:12
Heart kids can miss a lot of school, depending on the individual. And generally, there’s probably three main reasons for that. The first one would generally be attributed to admission to hospital or to surgery. And again, the length of time that they’re away from school can vary. There’s obviously the ongoing need for follow-up medical appointments and accessing ongoing care. So that can cumulatively over a year result in a not insignificant proportion of the school year missed.
And then the other thing that you have is often children with heart disease have low immunity or have reduced immune systems. So, parents may choose to keep their children away from school, if there’s an outbreak of say, measles or in flu season or other things like that. Or sometimes the school actually directs the family to keep those children home from school, because of the risk. Because there’s something going around the school at the time, and they don’t want the child to be impacted.
Megan Gilmour 24:16
Wow, and that makes me think of a couple of things there. So, we know that anything greater than 10% absence is – well, they say there’s no safe threshold for absence – but anything over 10% absence has a higher risk across the whole school life. And I think that’s about five school days a term, or something like that.
So, if we think about some of the situations that you’ve described, all the reasons why heart kids would miss school, it would be fair to say that they could miss more than five days in a term.
Lesley Jordan 24:59
Potentially yes, absolutely.
Megan Gilmour 25:03
And so that’s what we at MissingSchool look at, as well, is that translation of what’s actually happening outside of school in terms of school support, and how can we make all places of care, including treatment situations, so that we have school continuing, and social skills, social connections continuing as well. The second thing it makes me think about is the impact that COVID would have had on heart kids because of those immunity issues and that predisposition to risk.
Lesley Jordan 25:47
Yes.
Megan Gilmour 25:48
And that heart kids would have missed school even when school was back, and those public health orders were lifted and it was face to face, back to face to face that heart kids would have been missing more school than they had pre COVID.
Lesley Jordan 26:05
Potentially, yes, absolutely.
Megan Gilmour 26:09
So, what are the critical times in a heart kid’s school life?
Lesley Jordan 26:14
There are a number of critical times in a heart kid’s school life. The first would obviously be the years prior to starting school. And as we’ve sort of already talked about, if you’ve got a child who in the first 12 months of life has a significant hospital admission, or surgery, and they’re connected up to tubes, and all of those sorts of things, they do miss some of their developmental milestones. Through our Better Tomorrow’s early intervention, we aimed to address some of those neurodevelopment delays that can occur in that period.
The next period would be starting prior to starting school, so prior to starting kindergarten. Then you’ve got the transition to high school as another key time, and then leaving school and transitioning from being a teen into an adult and taking responsibility for your care.
The other obvious ones are when you’ve got a student who’s returning after an extended absence, because of surgery, or what have you. Anytime there’s a move to a new school or a change in teaching, including casual teachers, again, really important times to sort of connect with the school, with the student, understanding what the needs are for that child at that point in time and how do we best address them. And obviously, if they are going to be away from school for an extended period of time, how do we best support them to continue their education whilst they’re absent.
Megan Gilmour 27:47
Yes, indeed. And it’s just remarkable to me, it shouldn’t be so remarkable, but all of the things you’re saying is the language that we speak every day, no matter what the health situation or condition is – just a sort of highlight note from me here about how common some of these things are that you’re raising across health conditions. And I feel like that should make it easier for us to get the change that we want in our school settings, because we’re really dealing with some of the same issues whilst drawing attention to each special circumstance, be it the heart kids’ situation, or that one heart kid, what that means for them.
Lesley Jordan 28:53
Absolutely, yes.
Megan Gilmour 28:55
So, given all of that, what should families and schools be prepared for at different times in a heart kid’s journey?
Lesley Jordan 29:04
Yes, look so as we’ve said, it is really about the individual child and what their needs are. So, it’s about always being prepared with an appropriate understanding of the needs of the child at that stage in their life, ensuring that parents are able to meet with the respective schools and develop a plan specific for their child and particularly around falls and medication, and things that might potentially exacerbate their child’s condition.
And also, education with their peers. So, education for other children in the school around childhood onset heart disease, and what that means for that individual, because as you said, it’s often not a visible condition. These children look like every other child, particularly with their school uniform on if they haven’t got a scar, but the reality is, they have some significant in some instances, significant limitations in terms of what they can do, or what they can get involved in.
Megan Gilmour 30:08
Yes, and they might even forget those things themselves, I guess, even when they’re older.
Lesley Jordan 30:16
Indeed, probably more so when they’re older.
Megan Gilmour 30:19
Yes. Do you find that that schools feel quite nervous about this? I suppose I could actually go into the next question, and this might get wrapped up, so: What are the biggest challenges or vulnerabilities facing heart kids in school?
Lesley Jordan 30:35
Yes, great question. And for me, a really hard one to answer because every individual is different and they’re going to be going through something different. So, there are so many variables, their diagnosis, the severity, the support that they’ve got around them, the education that they’ve had, both about their condition and where they are in their educational journey to date. And also, the school culture is really important. So, there are a lot of things that actually influence how well this process is negotiated.
We do know some of the limitations that children may have, as we were sort of saying, it’s not always obvious that they’re a heart kid. And so, because they can’t always participate as their peers, we do tend to see a higher level and prevalence of bullying among CHD kids or amongst our heart kids. And, you know, obviously, that can then influence some of that anxiety and mental health issues as well.
But for us, really, the most important thing would be that the families feel empowered to explore, understand and advocate for the child and that the schools are actually engaged and inviting in terms of being able to really have meaningful discussions and negotiations about what that child needs to live their best life.
Megan Gilmour 31:59
Yes, I hear from that Lesley – thank you – individual learning plans are super important, and I would say a health and safety plan for that student as well.
Lesley Jordan 32:15
Absolutely. So, the planning around that child, what that child needs is multifaceted, and it’s really important for both the school and the teachers to be aware of, other than just the classroom teacher.
Megan Gilmour 32:30
Yes, for sure. And then that, you know, those sorts of plans and the sharing of those plans is those accommodations, so even adjustments given for what that student may not be able to participate in but enabling them to still be a real and true part of school life despite that.
Lesley Jordan 32:52
Yes, absolutely. Absolutely. Because one of the other things is also that whole social connectedness. So again, when you’ve got children absent from school, not only does it impact on their academic work, but it’s also that they miss their social connections as well.
Megan Gilmour 33:12
Yes. And it’s so unfortunate and there’s research-backed evidence to say that kids with complex health conditions or chronic health conditions are bullied at higher rates than their peers who don’t have the condition, and given a young person’s need for those strong social connections, and as you’ve mentioned, the disruption to school life through maybe bouts of not feeling good or having treatments, or being in hospital, and those transitions in and out of school, and those things are disrupted.
To think that there’s a higher rate of bullying going on, or any bullying at all, I should say, is really disappointing. But it’s also something that schools can be aware of, and teachers can be aware of, to I guess mitigate even through plans, good planning.
So, this leads on to the next question, what can you see that’s been happening now to address these challenges and vulnerabilities? And is it enough? So, this could even be what HeartKids is doing if you don’t have that full answer for schools?
Lesley Jordan 34:34
Look, I think between the healthcare teams, the community supports that are in place for these families, and charities like HeartKids and MissingSchool, we’re all working together to enable and support these individuals and these families to negotiate and navigate this as best as they possibly can. But as we’ve identified, the range, and the needs of those families vary markedly depending on the child’s health condition and severity.
And so, an individual approach obviously works best. And to completely fulfill that individuality or that need for a personalised plan, you obviously need more resources. So, I suspect like any other organisation, the need for a systemic approach at a national level that is well resourced would be our ultimate aim to address and provide the appropriate supports for these families long term.
Megan Gilmour 35:37
Yes. And it’s so good to hear you say families because we talked about it earlier – sweeping up siblings in that too, in the school setting as well. You mentioned that there can be some presentations of behavioral issues through no fault of their own. And I guess what we’re talking about here is looking at that whole family situation and how we can systemise school supports and take it to business as usual
Lesley Jordan 36:03
Absolutely
Megan Gilmour 36:04
So that in the first instance, to reduce the management burden on families, obviously, and primarily to support the heart kid the student themselves, collectively, but individually to have their best school life, and included in that, siblings.
So, Lesley what do you think that schools and governments currently don’t know? And how will the national insights for education directory, which is a collaboration between MissingSchool and organisations like HeartKids, how can this alliance, this collaboration help remedy any gaps?
Lesley Jordan 37:03
Look for us at HeartKids, you don’t know what you don’t know, right? So, there is currently a significant gap in terms of understanding the prevalence of CHD in the community. And so, for us, that’s probably the biggest issue that needs to be addressed in the short term.
The National insights for Education Directory will obviously provide for our families another portal where they can access heart kids specific support and information. And again, a suite of CHD specific education and resources will be available not only for the families, but also for schools and for teachers and for the broader community.
Megan Gilmour 37:45
Yes, amazing, and I just flag there, what you’ve said earlier about that critical moment of going from early childhood into school, and that space that you’re moving into, right there to prepare our heart kids for a big moment in their life, which is heading off to Big School.
Lesley Jordan 38:11
Yes, indeed. And as we’ve sort of said, ultimately giving them the best start in life to succeed.
Megan Gilmour 38:19
Yes, it’s fair to say that education and health are two of the most fundamental aspects of quality of life, and if we don’t make interventions and positive interventions early, we really are missing an opportunity to give these kids the best footing. Because I’m sure you have the same point of view as I do, these kids are just so amazing. And how strong they are, and how much they fight for their life, and their resilience is incredible.
Lesley Jordan 39:10
Yes. Absolutely, absolutely.
Megan Gilmour 39:13
Yes. So, we just call on everyone to show up for them because they really are fighters.
So, Lesley, as we draw to the end of our conversation, is there anything else that we should be asking about school quality of life for heart kids?
Lesley Jordan 39:36
Thanks. Look, I think again, you know, coming back to that whole issue of low immunity and things that may impact on their capacity to miss school, it’s about how we best support these kids too with their education when they’re unable to attend.
I think, you know, it is really important for schools to appreciate the need for assistance and aids in the classroom to support these children when they are in the classroom, if they are returning after a period of absence or have been absent for a period of time.
And also, how do we best overcome some of the social issues that come from that isolation of them being in hospital or being away from their peers. How do we best support that engagement so that they do develop good, foundational social skills to set them up for success in life.
Megan Gilmour 40:32
Indeed, and we’re over here trying to make sure that that education continues, when these kids are in care, either at home or in hospital or, or even in day clinic.
Lesley Jordan 40:49
Ideally, you want their education to be seamless, don’t you, whilst they’re accessing care.
Megan Gilmour 40:53
Absolutely. Yes, and we’re living in a world now where that’s absolutely possible. So, nobody will be surprised to hear me say that we’re fighting for that, and that we believe it’s completely possible today that a heart kid could continue their social connections and education, learning connections from wherever they are, whenever they can.
I’m just so excited about the possibilities and opportunities of these interactions, and to be able to bring forward, through people who connect to MissingSchool, what HeartKids (your team is doing, and what you’re doing, Lesley) and, obviously, all the work that families are doing too, to engage schools and the health system to put the best foot forward for these kids.
Megan Gilmour 41:54
So, your call to action? What’s your call to action for heart kids in seven words or less Lesley.
Lesley Jordan 42:04
Wait, can I have two please? My first one is live your best life. I mean, ultimately, that’s what all we want for any of our heart kids – is for them to be living their best life, feeling supported and going out there and succeeding in whatever it is that they choose to do. My second one is contact HeartKids if you need support.
Megan Gilmour 42:28
That’s brilliant. I love it. Thank you so much. I love the call to action, right. This just really sums up everything that you’ve said and shared with us so generously today.
And so, I’m just going to move into the closing part of this Live & Learn episode, our very first episode, I want to say that again. And I’ve been so delighted, Lesley. We met earlier this year for the first time, and I knew from the moment I met you that we’d be sitting here one day doing this, and I’m just so delighted that that moment has arrived.
Lesley Jordan 43:10
Yes. Thanks, Megan. Look, we’re thrilled to be partnering with MissingSchool and really grateful to be in this first trailblazing webcast.
Megan Gilmour 43:21
Yes, and I just love that we found a way where you can do what you do, and we can do what we do. And really, without doing very much more, we get to provide a resource and connections to information and that help and support just in time for families and for educators and for other stakeholders.
Lesley Jordan 43:48
It’s been incredible – I really appreciate what you’re doing in this space, because it really does provide an invaluable resource to not only our families but their broader communities.
Megan Gilmour 44:01
Thank you, Lesley, thank you so much.
I’ll close out by saying, please join us each week for a powerful and empowering deep dive into insights and experiences from education, health and community professionals, and parents and carers at the frontline. All working together so that students with complex health challenges can live and learn by keeping connections alive from hospital and home, across any places of care really.
I wouldn’t be doing my job if I didn’t say that we’re creating a world where all children are seen and heard. And did you know that a donation of $75 or the cost of three adult movie tickets will help one child with a complex health condition access school for one week from hospital or home, you can end their loneliness out there. You can find us at missingschool.org.au where you can make a donation.
Megan Gilmour 44:59
I invite you to make the same call and share your place of contact where people can find you.
Lesley Jordan 45:08
So heartkids.org.au. Hop onto our website and we have a whole range of information there for our heart kids’ families around childhood onset heart disease. Thanks, Megan.
Megan Gilmour 45:21
Thank you and do register your interest to be a guest on Live & Learn or to share this with anyone you know who you think it can help. And we’ll be sharing this with teachers in our upcoming Professional Learning Community Forum for educators.
Megan Gilmour 45:39
Lesley, thank you once again for your work at the front line, and for your many moments and times of study and whatever you’ve learned along the way to be a nurse, a midwife, an amazing entrepreneurial business person, and all of that experience that brings you to the front here to do this work for kids with complex health conditions, in this case, heart kids. Thank you for joining us today.
Lesley Jordan 46:12
Thanks, Megan.
Megan Gilmour 46:16
Thanks, everyone, for tuning in. Help us turn up the volume so all kids are seen and heard. Follow along, like, share, comment or leave us a review because we love hearing from you. And if you want to donate head to missingschool.org.au, because every dollar makes a difference.
View the episode here.
