RECORDED Mon 25 Nov 2024
SUMMARY KEYWORDS
immune deficiencies, hidden disability, treatment options, family impact, financial burden, school challenges, mental health, peer support, newborn screening, delayed diagnosis, rare disease, school engagement, health privacy, individual learning plans, community awareness
SPEAKERS
Megan Gilmour, Carolyn Dews
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 00:48
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.
Today on Live & Learn, we have Carolyn Dews. Carolyn joined the Immune Deficiencies Foundation, Australia team in March 2020. She is a dynamic and experienced professional with significant experience working across a range of industry sectors and in the not-for-profit sector. Carolyn is passionate about working with people to achieve outstanding organisational results and supporting members to ensure optimal quality of life.
Welcome, Carolyn. We’re so excited to have you on Live & Learn.
Carolyn Dews 01:37
Thank you for the opportunity to talk with you today.
Megan Gilmour 01:40
Our pleasure. So, Carolyn, today we’re here to talk about supporting school connections for students with complex medical and mental health challenges. Let’s dive right in.
So, tell us how immune deficiency impacts kids and why it’s something every Australian needs to know and care about.
Carolyn Dews 02:05
We find that immune deficiency can impact on children at different stages of life. Many of our members are babies who are born with an immune deficiency and therefore require lifelong treatment. They may undergo treatments like an initial bone marrow treatment, and then they will need to have plasma products in the form of immunoglobulin either weekly or monthly for the rest of their life. So, you can imagine that that has a significant impact on, particularly, school aged children and their parents.
So, children can either choose, or their parents can choose for them, to have treatment once a month in a hospital setting, or they can do their treatment at home on a weekly basis, and that’s the preference of many of our families, because then it can fit in with family routine. The treatment can be done out of school hours, and it doesn’t require half a day away from school.
In terms of going to school, we have some feedback from our members to say that a lot of the time, because children look well, it’s like having a hidden disability, because no one understands that they can often be very sick, that they often miss school as a result of that. And sometimes they have low energy levels, so they’re not always able to participate in activities and sports that are on offer at school.
So, one of the things we’re doing at the moment is working with school aged children between the ages of five and 12, to write a booklet in terms of a story so that we can distribute that to schools and teachers and get them to read that story to demonstrate how children with immune deficiency might be a little bit different from others. They might need a little bit more compassion. They might need for other children just to understand that they’re not always able to keep up with the rest of their peers.
Megan Gilmour 04:12
Indeed, that is something that all Australians need to know and care about. Many people probably assume things about immune deficiency. What’s the million-dollar question you get from parents or loved ones when their child experiences or is diagnosed?
Carolyn Dews 04:33
So, upon initial diagnosis, there’s a whole range of emotions that the individual, the child, in this case, the parents, and other siblings go through, because an immune deficiency diagnosis impacts an entire family. We do have families where a couple of children have immune deficiencies, and we have lots of families where one of the children have an immune deficiency.
So, what this means is that the family needs to come to terms with the diagnosis. They need to ensure that they’ve got a really good medical team so that they can obtain information about the diagnosis and living with an immune deficiency. They also need to access treatment, either from that hospital setting or to take home and access to treatment there is, depending on the location of where the family lives. It’s more challenging in rural and remote areas than it is in the city.
The cost of treatment is covered by the government but depending on the state that you live in and the hospital that you live in, the consumables like the needles and pumps and things you need for treatment are covered in some states and at some hospitals, but not always.
So, there can be a financial implication for families. There’s also a financial implication depending how sick the child is, because it may mean that one of the parents can’t work or can’t work full-time.
And then I think the other emotions that the family feel are these sorts of roller coasters where it’s up and down. Sometimes the child may be well for a long period of time and may be able to fully participate in school and in their community, and then there are other times where they may have recurrent infections, and they may actually end up in hospital.
So, it’s a really significant impact on the family, and it’s something that families have to come to terms with. We do have some very, very inspiring families who live with their children with immune deficiency, and they have become advocates and speakers to our audience, to show how you can actually be more than your immune deficiency.
So, we encourage people not to be defined by their diagnosis, but to continue to pursue other activities that they enjoy doing, whether that’s school sport, whether that’s music or the arts, we really encourage them to think beyond that diagnosis.
Megan Gilmour 07:03
That’s absolutely wonderful, and a big shout out to you and the team over there for the work that you do, it’s people like you who make a difference in our world and for these young people. You also mentioned that it’s an invisible illness or situation for these young people. So that’s also another layer of assumption that’s being made there is that ‘everything’s just fine and what’s the problem?’
What’s the most important thing you want these families to know and these young people to know?
Carolyn Dews 07:44
I think the most important thing is that it’s important to look to the individual as a person. It’s important to look at them holistically, and for our members and our families to focus on what the child can do. So, recognising that there’ll be times of being unwell and illness and hospitalisation, potentially.
What can the family do? We have a really inspiring family who are based in Adelaide. They have two daughters who are 14 and 16, who both have an immune deficiency. And that family encourages those girls to do really well at school, which they do. They’ve both pursued musical or creative hobbies, and they’ve developed a whole lifestyle around their treatment.
So, they do their treatment at home once a week, and they always make sure they’ve got a good Netflix series that they’re watching and the girls are leaders in their community, they’re leaders in their school community. The family go on holidays, the family do a whole lot of normal things, and they really talk about looking at the person holistically, and that’s what we want to encourage people to do.
And so some of our recent efforts have been around writing story books for school aged children, developing resources for families around lifestyle factors, such as the importance of nutrition, the importance of physical activity, importance of managing stress and fatigue and good sleep and all of those sorts of things, because our role is to provide wraparound support to these families and to these individuals so that they can live their best life.
We also have a range of online support services, so we aim to connect people of similar age online via either Facebook or online support groups that are run via Zoom and so that people in their teenage years and their early adult years can talk to others who have been through or who have gone through the same scenario as them.
So that’s something that we’ve really focused efforts on this year, through our community engagement team, to engage with these young people, to give them a group who understand what they’re going through. Because often they feel that their peers and their friends don’t really understand how their life is. So, we try and connect the dots in that way.
Megan Gilmour 10:26
That’s fantastic. Carolyn, tell us what brought you into the world of immune deficiency?
Carolyn Dews 10:37
Yes, that’s an interesting question. So, I don’t have an immune deficiency, and I don’t have a connection to anyone within my immediate family or social circle that has immune deficiency either. At the time that this role was being advertised, I was running my own business, and I was looking for a leadership role in the not-for-profit sector. That’s where I had worked for quite a few years, and this opportunity just popped up just before COVID.
And so, my background is in working in public health and health promotion, and also in leadership roles. So, when I saw this opportunity, I thought that just brings together all the things that I’ve done previously. I was just in the final stages of completing an MBA, which provides great skills to be able to run a business, because that’s essentially what this is like.
And so, I was successful in getting the role, and I came into the organisation the week before we went into the first COVID lockdown. So, there was many challenges around meeting the staff and certainly supporting the members.
The members were very anxious about lockdown, about isolation, and then we went through those two or three years of supporting our members – the vaccine was developing, when the community was in and out of isolation, and then trying to advocate for our members to be a priority group to receive vaccines and things like antivirals as well. It really took a long time for our members to feel comfortable to come to in-person events.
So, I think the first three years in this role, we did a lot of online support, a lot of social support, a lot of psychological support, but it felt to me like it was a long time until I was able to meet members in person because of COVID. And so, since coming into this role, we’ve had quite a few changes in terms of our staffing structure.
We’re an evolving organisation that needs to be able to pivot when we see need in terms of what our members are asking for. We’ve been able to work collaboratively with other organisations in the rare disease space, because there’s lots of organisations like us who support people with some type of rare disease. So, we like to learn from others, and what we’ve really focused on doing is engaging our members.
So when people join up to IDFA, we have a really thorough onboarding process, and we encourage our members to become involved in our organisation, because like most things you get out of an organisation, what you put in, and we rely on our members to tell us what’s important to them, what their needs are, but we also encourage members to connect with each other so they can create those peer support networks.
Megan Gilmour 13:40
That’s fabulous, and I’m sure it keeps you busy, or I’m sure you have very full days, by the sounds of it. Thank you for sharing your journey into this world and your generosity with your knowledge, which will be so helpful to listeners.
So, knowing all that you know, what’s your biggest hope for kids with immune deficiency, their families and loved ones when navigating this condition?
Carolyn Dews 14:15
Yes, so there’s a couple of things that I would really like to see. The first one is that it often takes a long period of time for anyone, including a child, to be diagnosed with an immune deficiency. So, I’d like to see more awareness and understanding in the medical world of what the symptoms are, so we can ensure that people are referred to the right specialists and get the diagnosis early on.
One of the things that we have just seen, which is very pleasing for children, is the government’s recently just adopted a recommendation around adding the condition, severe combined immune deficiency, or ‘SCID’ to the standard set of newborn screening tests.
That was off the back of a 10 year advocacy campaign which IDF were involved with, as well as many other organisations and individuals, and so we’re now screening for that condition across Australia, which means babies who have that condition will be able to access bone marrow transplants and/or treatment straight away, so that they don’t have too many health challenges or disabilities as a result of a delayed diagnosis.
So initially being diagnosed with the condition is important. It’s also important that people are able to access the right treatment, and I mentioned before the inequities and some of the costs around treatment, we’d like to see that overcome so that all families are able to access treatment and their consumables free of charge, so it doesn’t add that financial burden.
And we’d also like to see more understanding of immune deficiency and rare disease in the school community. So that’s why we’re developing our resource so that we can have something that explains to other children and to teachers what an immune deficiency is, how it may impact a child, and in doing that, we hope that children can feel more comfortable in their school community, and that they can feel that they can engage with other students without being judged, and that other students are able to understand, perhaps, the challenges that they face.
And the third thing I’d like to see is for us to be able to connect more of our community together so that they have a peer support network, and as children grow into adulthood, just to encourage them to pursue whatever their goals are in life, whether that’s study, work, travel, sporting pursuits, whatever that might be, and to do that in a way where they’re aware of their condition, but they are able to develop themselves and manage their condition at the same time.
So, they’re the sorts of things I would like to see for our children. And to achieve those we need to work with government, we need to work collaboratively with the rare disease sector, and we need to work with school communities. So that’s something that we’re starting to do.
And we also need to work with our current members, who have some good news stories about how they and their children live with immune deficiency. And I think the patient voice, or the member story is really powerful in these situations, because it can show the community what can be done and what is being done, and how inspiring our families are despite some of the challenges that they face.
Megan Gilmour 17:40
Yes, they’re really excellent goals, and we look forward to watching the journey and hopefully the fulfillment of those fantastic ambitions.
What are some of the common and perhaps frustrating public misconceptions about immune deficiency, and how have you seen this impact families? So, what does immune deficiency look like in the world of school, for example, and what are those misconceptions that kind of play into frustrations around it?
Carolyn Dews 18:22
Immune deficiency is a group of more than 500 diseases. So, in a school setting, that looks like a disease or a condition that most people have never heard of, so therefore, the level of awareness and the level of understanding is really low.
So, I think there’s a need for education within that school community that this child has a condition that they often have infections, flu, they’re generally often unwell, that they do need treatment on a regular basis, and in some cases, that may necessitate time away from school.
It also means that with their condition, they are going to miss some school. So, it needs flexibility in the way that the curriculum is delivered, so that students have the option to do some of their schoolwork at home, when required.
I think it also needs good relationships between the schoolteachers and the parents so that they can ensure that that child has access to a quality education, even though they may miss chunks of school at a time.
It’s also things like we experienced in COVID. So, our members are really susceptible to infection. So, because they don’t have fully operational or fully working immune system, they are susceptible to picking up anything that’s going around in the community at a particular time.
So, I think this is one of the positives that came out of COVID, is that we’re all much more aware now that if you’re not well, don’t go to school, don’t go to work, stay away from others. So, I think that that respect for people with an immune deficiency is something that we would like to see, that if people are unwell, you know, don’t come to school.
And we had one example of one of our teenage members who had an experience where her school teacher, came to school really, really unwell. And this teenager was confident enough to say, “Do you realise that by you being unwell, that could result in me getting an infection, which might mean I miss school or, I mean hospital for two weeks?”
So, it’s really education and its really advocacy as well, to have the confidence to say, you know, “This is what I need at the moment” or “I can’t be around people who are unwell”. So, I guess, in line with you know, the school community, what we need to see is more education and more awareness so that people can make appropriate arrangements within the school community.
Megan Gilmour 21:02
And how many Australian children and youth are living with immune deficiency right now?
Carolyn Dews 21:10
Yes, that’s an interesting question. There is no register of immune deficiency in Australia. It’s something that’s being researched and developed at the moment, but we would estimate that probably one in 5,000 people have an immune deficiency.
So many people are not diagnosed or have a delayed diagnosis, so we don’t have oversight of total numbers of immune deficiency in the community at the moment. There are also other conditions such as immune dysregulation and autoimmune disease, which affect many people and have slightly different symptoms.
And recently, I was at a conference with the rare disease community, and when you put together all of the different rare diseases, many of which have symptoms like immune deficiency, we sort of coined a phrase that ‘rare disease is commonly rare’. So, enough people have rare disease that it’s not entirely rare, but we are really looking at how it can get oversight of vendors and develop a register so we can collect that data.
Megan Gilmour 22:17
We’re hearing this a lot in terms of gaps in data, and I think for all of us, it’s one of the reasons why these things stay hidden, and we don’t get the progress that we would like as fast as we want it.
Is there a risk of delayed diagnosis? I think you’ve already answered this, but I’ll ask it anyway. Is there a risk of delayed diagnosis, or are most cases picked up easily?
Carolyn Dews 22:50
There is strong risk of delayed diagnosis. So, we have a resource that outlines 10 symptoms of immune deficiency, and we try to circulate that widely to GPs and health professionals. But it’s things like recurrent infection, chest infection, earaches, those types of things. So, they’re quite non-specific symptoms, which can often mean a delayed diagnosis, because the GP might prescribe antibiotics on a number of occasions, or someone might get referred to a respiratory physician initially.
So, they might sort of follow a bit of a journey where it takes them a while to be diagnosed with the newborn screening that’s in place now for babies, that’s one step towards a very quick diagnosis, because that shows up on a newborn screening test.
And I think with increased education and awareness, people will become more aware of immune deficiency and potentially the symptoms, and part of our role is to engage with the healthcare community to provide that education so that people working as a GP or in clinical settings have an understanding of what these symptoms potentially need.
Megan Gilmour 24:10
Yes. And I like what you said earlier about your coalition with other rare diseases. And I think you said ‘commonly rare’ was that the term that you used?
Carolyn Dews 24:22
Yes, that was the term.
Megan Gilmour 24:22
One of the things that we’re also working on when we hear education systems identifying mental wellbeing and mental health and mental conditions in young people and school students, is that there seems to be a clustering of mental health, but an individualisation by disease or illness or condition for medical conditions, which is unhelpful when we’re trying to look at the complete numbers of people.
So, as you say, when you combine all rare diseases, that’s a large number of people, and when we combine all conditions and medical conditions, health conditions or diseases, that’s a lot of kids.
Carolyn Dews 25:18
It is a lot of children that are impacted absolutely. So, I think that’s where collaboration is really important around some of these conditions, where children may have health challenges and they may be a bit different to other children in their class, is just raising that awareness and encouraging acceptance of children as they are.
Megan Gilmour 25:39
Yes, that’s what we’re working for as well, and we hear that on Live & Learn a lot, and I’m saying that because there is a lot of commonality between health conditions and the experience at school and the things that we’re trying to work for.
So, that also gives me a lot of hope about this collaborative approach and moving forward to get some kind of consistency across Australia, for how schools engage with students with health conditions – and in a classroom of kids the data says that up to up to 30% of children have a health condition. So, in a classroom, that’s one in three.
It comes back to what you were saying, combined, it’s a significant number of children in the class. So greater empathy across the board about conditions is going to make classrooms more effective going forward.
Carolyn Dews 27:01
Yes, I totally agree when you consider those sorts of numbers, that is significant, and that means that there are many children in a school setting who have a condition that they’re living with day by day, and when it’s a health condition that can impact on the rest of their lives, about how they feel, about how they perform academically, about how they relate to other children. So, it’s a really important area that we need to address.
Megan Gilmour 27:31
Yes, and I’m looking forward to raising awareness through all of our Live & Learn collective data, where we find these commonalities, one of them you mentioned right out of the gates and everyone does, which is for that young person to have their whole identity recognised, rather than just this one part, which is obviously a large part, but to be able to be seen as a person and to have the opportunity to have and participate in as much of their life as they can and want to – their own hopes and dreams and vision of their life.
What kind of complication do kids with immune deficiency face?
Carolyn Dews 28:21
So, the main things that they face is recurrent infections of a variety of types, and sometimes those infections can be managed with antibiotics and rest and time off school. Other times, children will end up in hospital, and so that has a significant cost to the child, to the family, to the healthcare system and obviously to the education of the child. So worst case scenario, children can miss a lot of school, and they don’t receive the full education that their peers are receiving as well.
I think the other challenges that the children face in relation to their health is just that stigma of having a condition or a rare disease, the stigma of feeling isolated and not feeling part of their peer group and perhaps missing out on things, you know, because they may not be able to go to other children’s birthday parties and social events and sporting events and those sorts of things, because there’s either a fear of contracting an infection or they are actually unwell.
So, there are really significant challenges for our children, despite that, we see many of our members living, you know, a great life. Many of them are able to participate fully in life most of the time. There may be just sometimes when they’re not well, or they need to, you know, take it easy for a little bit, or they’ve got low energy levels. But for most of them, they can participate quite well in school and social life as well.
And I think that’s part of what we’re aiming to do, as you just mentioned, is to get individuals and children to think of themselves holistically, not just about their condition. So, once they’ve got their treatment in place, and the recognition that they may have an infection or they may be unwell at times, looking at what they can do in the school setting, and look at what they can do outside of school as well, to enjoy.
Megan Gilmour 30:28
Is having an immune deficiency life threatening?
Carolyn Dews 30:38
That’s an interesting question. Having an immune deficiency, if you receive treatment regularly, then you can manage your condition. If you are born with an immune deficiency, like SCID, and if it’s not picked up early, such as was the case before newborn screening, it definitely is life threatening. And previously, most babies born with SCID lived until they’re only two or three, and most of their time was spent in hospital. So that condition is very much life threatening.
And sometimes the illnesses or the infections that people pick up as a result of immune deficiency can be life threatening. So, people may have like, you know, influenza, they may have severe lung infections, they may have respiratory infections which then become life threatening. We do have a lot of members who are now beyond retirement age, and they’ve lived really quite a full life by having treatment, they’ve been able to work, have family, travel, all those sorts of things.
Megan Gilmour 31:47
That’s a great shout out to advancements in medical science and treatments, and we’ll all be looking forward to what the future holds as we hear that medical science will advance exponentially over the next five to 10 years, but it is important to point out, as you’ve shared with us, that this is a significant condition. And coming back to our very first question, something that we should know and care about.
Carolyn Dews 32:26
Yes, that’s true. I think we were very fortunate that one of the unexpected outcomes of COVID was that everyone in the community now understands the condition immunocompromised, and that’s essentially what our members are. So, they need to be careful in public settings. They need to ensure they have good hygiene. They need to isolate at times.
So, from our perspective, we’ve used the experience of COVID as a springboard into really wrapping up the education that we’re providing within the community.
Megan Gilmour 33:01
There had to be a silver lining, didn’t there? We also have shone a light on the silver lining from COVID, which is that in a public health crisis, everybody, public and government expected school to continue for students who were at home in lockdown, and we also saw the use of, or the widespread adoption of technology to enable these students to continue their learning alongside their peers and have access to their curriculum with their teachers.
So that is what we’ve been working for since 2012 and you know, along comes this public health crisis, just to demonstrate, in some fashion, what it might be like for somebody living in a personal health situation or even crisis at times, and that these two things have some complementarity, in terms of what that feels like for the individual who has the personal condition.
What’s the current population of school aged children with immune deficiency? And if you have that data, how accurate is it? Is it tracked for example?
Carolyn Dews 34:25
No, it’s not tracked. And as I mentioned before, we’re really trying to work collaboratively to get a register of immune deficiency within Australia, collected through our health system, which is currently disjointed, so we don’t have oversight of the school population with an immune deficiency.
And in fact, one of the things that we are doing – we’ve got Rare Disease Day coming up on the 28th of February – is we’re running a school campaign where we’re encouraging students with an immune deficiency to go to their teacher and request that there be a lesson on immune deficiency, which we’re providing.
And we’re running a colouring competition for kids concurrently to try and see if we can build up some education and awareness and eventually get some level of education within the curriculum about immune deficiency, about rare disease, even if it’s just on a day like Rare Disease Day, where that’s talked about in school community and recognised by teachers and students.
Megan Gilmour 35:29
All the best with that, it sounds like an excellent way to encourage student agency as well as get the word out.
Do kids with immune deficiency currently miss a lot of school, and why? You’ve touched on this. Let’s drop some more information in there or have a bit more of a chat about that part of it.
Carolyn Dews 35:51
Yes. So, this really varies. What we’ve seen is that students who are at the back end of their school career, so year 10,11, and 12, anecdotally, we know that they do miss a lot of school, and we also know that, depending on the advocacy skills, usually the parents as to how complete their education is.
So, we have families where the parents have good relationships with the school teachers and students are able to do work at home during COVID. We have families who chose to home school for children because they could then teach them, and they weren’t at risk of infection in that COVID environment.
But I think it’s probably fair to say that, on average, children with an immune deficiency miss significantly more school than a child who doesn’t have a health condition. As mentioned before, we don’t have data on that, but we know from talking to our members that children often have infections and are often unwell, and even at a time when others in the community are susceptible to infection, so winter and that sort of thing, Often it’s a better choice for students with immune deficiency to stay home rather than risk an infection and potential hospitalisation.
So again, we’d like to collect data on that. We do know that our population do miss significant amounts of school at different times.
Megan Gilmour 37:25
Yes, and there’s two things that I’d like to pick up there. So, we know that there’s no safe threshold for school absence, this is what the research says, and anything more than 10% of school missed can be problematic for a student across their whole school life. So that’s five days per term.
I think it’s fair to say that the kids that we’re talking about here might cross that threshold, and that’s cumulative across the whole school life, meaning, and you mentioned it before, and we talk about it, could result in an incomplete education, even if year 12 is completed, because of those days missed.
And the other thing I wanted to just pick up there, which is, I guess, an assumption or misconception that we see, is that when students are, as quoted, ‘sick’, that they can’t do school. And this is also not true in our experience. And I hear you saying that as well, that in cases where there’s a community outbreak or a school outbreak, of, you know, influenza or other things that might cause a problem, these students are often isolating at home to avoid that risk, and they can continue their school, their lessons, if the right things are put in place for them to do so.
So, these are a couple of important points, and I should add to that, that we have been providing two-way digital connection via telepresence for students into their classrooms. And this is something we really want to see become a standard, which is, that if a student with a documented health condition who misses a lot of school could be able to join their classes through two-way, digital connection, just like we’re having our conversation now, and continue that learning alongside their peers, with their teachers at the times when they can’t physically attend. It just enables so much for that student that they’re not getting now. So that’s where our big push is coming from.
Carolyn Dews 39:52
That’s really important, I think. And we’ve shown, like you said, through COVID, that we can do this sort of thing. So, I think that’s something that’s important to advocate for, and important to have as an option for students for a variety of reasons, one of them being a health condition.
Megan Gilmour 40:09
Yes, it’s just so simple to do. And with the support of education systems, that would be all set up for teachers, and the student can join, and the teacher can teach the lesson once to everyone in the class and get around this sort of approach of ‘we’ll send worksheets home, or we’ll send things home, and they can sort of teach themselves and do it themselves’.
I don’t think anybody is expecting, well, if anybody thought about it, clearly the idea that kids could just receive a package and teach themselves at home when they’re having gaps like these, it’s just not the ideal.
But we hear this a lot, and it sounds good, but to come back to our point, it’d be amazing if we could just have some standard approaches in place where the kids and families aren’t even trying to work this out themselves. You know, they’re just this is how we do things. School continues for as much time as that student can do it from wherever they are, whether it’s hospital, home or, of course, everyone’s goal is for the most amount of time inside those school gates.
Carolyn Dews 41:32
Yes, I totally agree. I think it’s something that we really need to look at, because there’s many reasons now why students can’t always attend school, and the family may not have the capacity to be able to teach the child. So there needs to be some sort of system where something can be sent to the child, or they can log in online, and they have that opportunity to continue to learn, regardless of where they are.
Megan Gilmour 41:56
Yes, and keep up those important peer connections that seem to get broken. I mean, we all know from our own experience that a couple of days or a week is a long time at school in terms of conversations that go on and what happens. And feeling sort of left out when you’re re-entering over and over again, is also challenging for students and anxiety provoking.
Do you hear that students, kids, in your membership, experience mental health conditions around their immune deficiencies?
Carolyn Dews 42:36
I think it’s fair to say that they experience anxiety. We haven’t had sort of direct reports of people – or children, anyway, in terms of their mental health. We certainly have with our general membership, and one of the things that we do as part of our peer support and mentoring program is we put our peer mentors through the mental health first aid course, because we feel like that’s really important to be able to support other members, and also know when they might need to be referred on to specialised services.
But I think there’s a lot of anxiety amongst school children because they have a health condition that they’re managing, they’re different to their peers. Their peers don’t understand, so I certainly think that’s an added burden that our members may have in the school setting.
Megan Gilmour 43:25
Yes, and this is super important to acknowledge. It certainly comes up in every conversation that we’re in, anxiety, if not other types of mental impacts, psychological impacts. And also, just the catching up all the time with school as well, trying to stay on top of it when you’re missing school.
And I think it’s, what I was going to say earlier as I was listening, is that we also see – and it will be true for kids with an immune deficiency too – is that they might also have another condition or a physical disability as well.
So it’s not just sort of one thing that these kids might be dealing with, and there’s often that intersection of a bunch of other things as well, as just growing up and all of the different experiences that go on just being a teen, for example, or navigating through primary school and all of these milestones and developmental things and hormonal changes they’re going through as well.
Carolyn Dews 44:44
Yes. Look, I think that’s absolutely true. I think that there’s a lot of challenges with being a child in today’s society, regardless of your age, certainly when you get to those teenage years and probably universities, and another one as well is that having to navigate that landscape with an immune deficiency becomes all the more challenging compared to other teenagers.
Megan Gilmour 45:05
Yes. And speaking of that, how are siblings and peers of kids with immune deficiency impacted, and what should families be across there?
Carolyn Dews 45:16
Yes, so often siblings are. I guess they’re having to support the sibling with an immune deficiency. They’re often having to compromise because the child who’s unwell will need to be taken to treatment, will need to be taken to hospital, will need to be taken to other medical appointments, so that impacts on the family’s time to allow other children to do activities and so forth.
And so, we’re looking at a program that does support siblings, because I think it’s important, because while they may have good health, their childhood is definitely impacted by having someone in the family who is unwell a lot of the time.
It means that they may miss out on things, they may not be able to do certain activities, and also, they may see their sibling being misunderstood in the school setting or that type of thing.
They may see that their sibling’s falling behind in their learning, so they need to develop coping mechanisms, resilience skills, but also probably to advocate for their own needs as well, within a family and within the school environment.
Megan Gilmour 46:34
Yes, I love that. Advocate for their own needs in their families and their school environments. So right there, we’re talking about siblings, often the most underseen young people in circumstances of families dealing with a child with chronic health condition. So good to hear that you’re doing work around that.
So, what are the critical times in a kid’s life with immune deficiency, that’s in their school life, and what should families and schools be prepared for at those times?
Carolyn Dews 47:16
I think the first critical time is for the parents deciding at what point they send the child to school. So again, from discussions with our members, often our members will hold their child back until they’re sort of six or just like a little bit older, because they may not have the emotional maturity to go to school or the physical resilience to go to school.
So, it’s about deciding when you send your child to school. It’s about deciding on a school environment that’s suitable for that child. So whether that’s a smaller community school where people know each other and are more accepting, and I think it’s then a matter of throughout the school journey is about having the relationships with teachers within the school, so that they understand your child’s needs and they are able to work with you if your child needs to have time off, and to have work that they can do away from the school environment.
It’s also about education regarding the child’s health and their treatment. So, the fact that towards the end of their treatment, if they’re doing the hospital treatment, the child might have low energy levels in the last week, so they may not be able to compete as much in sporting events, they may feel tired in the classroom, they may need to go home early, that type of thing.
And then I think it’s about the same decisions when your child gets to high school, and probably the child’s got more awareness and more independence around their condition then, so it’s about choosing a supportive environment. It’s about equipping your child with resilience and advocacy skills and a level of education about their own conditions, so that they can talk to their peers about that.
I think there’s also a need for organisations like us and maybe others to provide families with support where there’s anxiety, and as you mentioned before, the mental health, the implications of such a condition.
And I think for children in their teenage years, they seem to go one of two ways with their immune deficiency; they don’t want to know about it at all, or they take on the responsibility for their own treatment. And if they do that, what we aim to do is connect like people, so people with an immune deficiency, even if they might live in a different state or several hours from each other.
We are trying to create support groups around those teenagers and young adults, because they transition and go through different phases, and we work with them to try and provide suitable support and develop suitable resources that they can use on a practical level.
Megan Gilmour 49:53
Yes, and I guess another important one that you’ve mentioned earlier, and we don’t need to go back into, is that choice between hospital treatment and home treatment, and then how that looks across the school life. As well, given that, I think you said that it would take a greater chunk of time during the hospital treatment, and also, I guess that psychological toll that you mentioned there with the treatment.
Carolyn Dews 50:27
Yes, that’s right. And I think we’ve seen how some of our families have incorporated treatment at home very successfully into part of their week. So that’s a that’s a big consideration for parents as well.
Other things like needle phobias are a real thing, so some children have a really significant adversity to needles. So that might influence your treatment. You might be more likely to go into a hospital where there’s a nurse who’s got that experience and skills in needles, so there’s a whole lot of things to consider around treatment.
Also, depending on where you live, if you change locations of where you’re living, it might impact on your treatment options as well.
Megan Gilmour 51:08
Yes, and you mentioned, critically, earlier, is that people who are not in cities but a rural, regional or remote, that’s a whole different ball game there again, in terms of services available and how families would navigate that.
I just wanted to pop in here with a with a little plug for the Disability Standards for Education, which is a national regulation that applies to every school in Australia, which makes it an incredibly powerful regulation, and it’s often misunderstood that the term disability will often be one that schools and families have a certain conception of, and might miss the fact that the Disability Standards absolutely covers health conditions like the one we’re talking about.
Carolyn Dews 52:08
That’s an interesting point, because we’ve not long developed a resource around accessing the NDIS for our members, and we worked with a disability provider to do that because, as you would know, there’s very specific terminology that you need to use to access the NDIS. So, the difference between health conditions and disability is something that’s important to provide education on as well. Yes, totally agreed.
Megan Gilmour 52:33
Yes, and the standards is great, because whether it’s K through to 12, whether it’s Tasmania or WA, whether it’s a Catholic school, independent school or a public school, this standard applies to every single school in Australia, and it also sits under the Disability Discrimination Act, which means that what it’s intending to do is provide equality of opportunity. So, to provide the support that enables that young person to have an equal opportunity in their education.
So, in short, it means being able to enroll in your school of choice and stay enrolled in your school of choice. It means being able to access your classroom and school, so where we also say, through two-way digital connection. The standards allow, right now, for use of assistive devices and technology to maintain access to the classroom; and access to the national curriculum; access to additional support; freedom from victimisation.
And so, you can hear right there, that as it’s written right now, it applies so readily to these, to health conditions, including this one, and is a great language for families to use when they’re talking to schools, because schools know it. They know it deeply.
They just will not be connecting it with an immune deficiency situation. But once that connection is made in the school’s operation or management or engagement with the family it will open up some doors, including having an Individual Learning Plan, and often enable the school to receive more funding for the additional support they might be providing.
So, we always mention it. We love it, and we find that it makes things a lot easier for families trying to navigate those additional things. And you mentioned fatigue a few times here, you know, in exam time or assessment time. The Disability Standards enables adjustments, documented adjustments to be made that are agreed between the student, family and school, and that could involve additional time or a quieter space, or to be able to have a break in an exam period, or to sit in a different area of the classroom, if that makes life easier.
So, there’s a whole range of things that can happen through these Standards. So that’s always my plug on these.
We’re right at the end here. You’ve mentioned the biggest challenges and vulnerabilities. Do you think what’s happening now to address these is enough in schools?
Carolyn Dews 55:48
I think there’s a lot more work to be done in terms of engaging with schools. So, across the departments of education, Catholic and independent, and that’s something that we would like to do. It’s a big piece of work to do that, but what we’re doing is we’re starting small.
We’re trying to engage just with a couple of schools, where we know we have students with immune deficiency and trial our idea of introducing a small amount of education, but we would really like to have a more strategic approach to that, so there is a level of awareness at all schools about children with immune deficiency. So, I think that’s something for us to focus on in the future.
Megan Gilmour 56:24
Absolutely. And I’ll throw in another one too, there with Individual Learning Plans. It’s that also a health and safety plan at school that goes hand in glove with that and helps schools to know what they need to be aware of.
We’re coming from an interesting place, in that we hope that we get to a time where the actual health condition might not even need to be mentioned to the school, but where we can actually say, here’s what you need to know for education, here’s what you need to know for safety.
And this is how this person, this young person, noting that they’re all children, are all individual as well and have other related diagnoses, perhaps or even disabilities. Children might be, you know, neurodiverse as well.
So, one of the things we hear, and I think it has to do with health privacy, but it also has to do with that critical thing you mentioned at the beginning about identity and not wanting to be identified. We hear in these conversations that sometimes children don’t want schools to know their condition. Do you hear that in your work as well?
Carolyn Dews 57:50
Yes, that’s true. It’s a matter, I think, of respecting individual privacy and choice and providing education to the schools in case they have a child that does disclose that particular condition.
Megan Gilmour 58:05
Yes absolutely. We’re also working on how we can combine all of these things that we learn in a way to shift our schools forward to a place where understanding what schools needs to do educationally, and for health and safety, and all of those things means that the teachers may not even need to understand the condition itself to provide what that student needs.
So that’s an area of exploration that we’re interested in as well, and hearing feedback from our partners, like you.
So, let’s just go to the call to action. Carolyn, what’s your call to action for immune deficiencies in seven words or less?
Carolyn Dews 59:06
For schools engage with us on Rare Disease Day to educate your community.
Megan Gilmour 59:14
Fantastic. That sounds like an amazing, broad and encompassing, good thing to do, so I want to give a shout out to Carolyn and also to Immune Deficiencies Foundation Australia. You can find them at www.idfa.org.au.
Head there for engagement, for the amazing resources that Caroline has mentioned here, and also give generously. Charities like ours need all the resources that we can get to do the good work that we do.
And I want to thank you for your generosity today, Carolyn. You’ve been amazing in sharing your work and in enlightening us about immune deficiencies. I’ve learned a lot today myself. So enormous thank you for joining us on Live & Learn.
Carolyn Dews 1:00:14
Thank you so much for the opportunity and for the shout out, we’re always encouraging people to learn more about immune deficiency, and certainly, any donation that we receive, 100% goes towards providing services for our members.
Megan Gilmour 1:00:32
Thanks everyone for tuning in. Help us turn up the volume so all kids are seen and heard. Follow along, Like, share, comment or leave us a review, because we love hearing from you, and if you want to donate head to www.missingschool.org.au, because every dollar makes a difference.
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