It can range from abdominal pain to headaches, complex regional pain syndrome, musculoskeletal pain or other pain.
Chronic Pain Australia chairperson, Nicolette Ellis says there are approximately 877,000 children who are living with chronic pain.
“… and it’s costing families and our nation dearly,” she says.
With just nine paediatric clinics nationwide, waiting times for children to see a specialist range between one to three years. Some states and territories don’t even have a paediatric pain clinic.
“It usually affects children between the ages of six to 18 and we typically see most onset around age 10 and then a diagnosis around the age of 13 because most are experiencing a three-year wait until they get a diagnosis,” Ellis shares.
In Australia, chronic pain is not recognised as a condition in its own right, only as a symptom of something – which is problematic according to Ellis, because it means at a federal or government level, it’s not seen and therefore not coded in our system as a condition.
“What that means is that it’s not analysed at that federal health level, it’s not included in policymaking decisions, it’s not included in the service funding or the service delivery.
“That really cruelly compounds the struggle of living with pain, because it’s not only difficult to diagnose, treat and manage, but it’s also invisible in all of our systems.”
Ellis says if the Federal Government is serious about boosting productivity, “we need urgent recognition and investment in chronic pain diagnosis, management and treatment for children so that these families can get the care and support they so desperately need”.
Nicolette Ellis says chronic pain has been the leading cause of disability and lost productivity in Australia for decades, yet it is still not recognised as a condition in its own right. This means it is missing from policy, analysis and service planning and our children are paying the price, she says.
She says the challenge for parents and children when there is ongoing pain is enormous, because not only do they have to understand and navigate and upskill their knowledge, literacy and health, but then they also have to do this in their education space as well.
She says in an ideal world, schools might hopefully provide experts in how to support a parent and a child in this space, when health is an issue and they might need flexibility in how they access their education and help to deliver an appropriate plan that’s managed with the parent, the child and their healthcare professionals.
That social connection to their peers as well is “super important”, she shares.
“Too often though what we hear is stories of how flexibility or support isn’t provided for children and it’s made unnecessarily difficult for the parent and the child to access that.”
Sometimes there’s an obvious event, there’s a fall or injury medical intervention that marks the onset of pain, but often there’s no really obvious cause. A child’s absolutely fine and then they’re not. This makes it incredibly difficult for teachers.
“I think making no assumptions that it’s not real and truly believing the legitimacy of the pain, is vital, Ellis says.
“For children it may be presenting, they may be saying that they’re in pain, but it may be a different reason of why they’re having that experience.
“We know that a lot of masking happens for different reasons and there’s a lot of ways that children will express emotionally how they’re feeling or physically how they’re feeling as well. I think that validation is the most important thing and truly believing that from the outset.”
Ellis says when you’re talking about validation, it’s not just about validating that their pain is real, but a lot of kids don’t even want to magnify what’s going on with them.
“So, it might be cues that you talk about with the parent and the child around how to signal it’s a bad day without having to verbally talk about that.
“And then what is the plan when there is a bad day? And then actioning that.
“I think for teachers a really useful thing to know is that when you validate someone’s pain experience that actually provides pain relieving hormones that reduce pain as well. They’re actually helping to support that person who is living with pain.”
Teachers are deeply committed to their students’ wellbeing, but when it comes to pain, they’re often left to navigate complex situations without training or guidance, relying on instinct and personal experience, one expert says.
Now in its second year, this week (September 22 to 28) is Kids in Pain Week.
"The aim is really to raise awareness first the issues of where parents and children are just left and struggling,” Ellis explains.
Monday saw the launch of the Kids in Pain report, which is full of the lived experience of children and parents who are living with chronic pain. It’s the first “really big data capture snapshot” of what the experience is for Australians in this space.
Lifting the lid on the experience of chronic pain in children, the report found every aspect of their life is affected - 84.3 per cent of children struggle with sleep, 85.1 per cent are unable to participate in sport, and 82.5 per cent experience significant mental health impacts.
Their schooling suffers, with 82.7 per cent missing school due to pain, 80.6 per cent reduce their participation in activities, and 56.6 per cent fall behind academically.
Seventy per cent of children experiencing chronic are told their pain is due to anxiety, 53.9 per cent have their pain passed off as “growing pains” and 48.7 per cent are told it was simply “normal”.
Neurodivergence is common - almost three-quarters (72.9 per cent) of children with chronic pain have at least one neurodivergent diagnosis, most commonly autism (40.2 per cent), ADHD (35.4 per cent), auditory processing disorder (10.9 per cent) and dyslexia (9.6 per cent) which complicates diagnosis and treatment.
There is also a gender pain gap - girls and young women are disproportionately affected, making up nearly six in ten (57 per cent) of children living with chronic pain compared with just over a third (36 per cent) of boys.
Kid in Pain Week will feature expert webinars covering the latest neuroscience in paediatric pain, along with insightful sessions on how to navigate school with a chronic pain diagnosis, and will end with a virtual event for kids living with pain and their families and carers, featuring Kids in Pain ambassadors, celebrity messages, expert insights, activities and prizes.
Ellis says the Smiley family have been instrumental in really advocating and driving for the acknowledgement of kids in pain and done a tremendous job to advocate for children and the parents and carers who are in this situation.
“We just want to cut through all of the noise that’s out there about misconceptions and misunderstanding of chronic pain so that parents, carers and children can get trusted education and peer support as well,” she shares.
A new study from the University of Technology Sydney’s Dr Rebecca Fechner has highlighted the emotional and mental toll on teachers managing student pain in classrooms and has called for systemic change to better support both educators and students.
Speaking to EducationHQ recently, Fechner shared that her study suggested pain science education can create meaningful change for both teachers and students in several key areas.
Because pain is a social experience, student-teacher relationships can be harnessed with targeted training and as a result, positively change pain outcomes.
A collective understanding of the biopsychosocial nature of pain can optimise existing inclusive policies and supportive environments in schools, while misconceptions about pain, such as the idea that children exaggerate or that pain must be visible, need to be addressed through pain science education.
The study called for pain awareness to be integrated into teacher training, school policy, and public health initiatives, recognising pain as a legitimate barrier to learning and empowering teachers to be part of the solution.
The report is available here, along with free resources and support.
