For young Sinead Gannon, who lives with juvenile idiopathic arthritis (JIA), the challenges were formidable. Her condition led her to miss almost a whole school semester. The diagnosis came swiftly from a private clinician, but many children like Sinead endure prolonged periods of uncertainty before receiving adequate care. The median time from symptoms to diagnosis of JIA is shockingly high, sometimes up to 10 months. Medical professionals are raising concerns about the current state of paediatric rheumatology in Australia, particularly regarding workforce shortages that may hinder timely diagnosis and treatment.
Dr. Mark Friswell, a pediatric rheumatologist, frequently meets new patients with deep and disabling joint damage. All of these problems stem from late diagnoses. He claims that the system as it stands is way off course from meeting the 2030 goal for paediatric rheumatology workforce development. By 2025 Australia would be short 27 paediatric rheumatologists. This number is well short of the 61 part-time equivalent clinicians that are required. The lack of access to a paediatric rheumatologist in areas including Tasmania, the Northern Territory and Canberra increases this problem.
The Impact of Delayed Diagnosis
For Sinead, the impacts of late diagnosis were devastating. She described her experience saying, “I had to take almost an entire term off school, spent most of those days in my bed and I was very tired. I had a lot of depression.” Her ability to engage in activities she loved, such as drawing, diminished significantly due to the pain in her wrist and other joints.
In addition to the emotional toll from physical discomfort, kids with JIA are more vulnerable to mental illness, including anxiety and depression. Sinead’s mom noticed that her daughter had increasing issues with her energy and mental health. That confusion was compounded by a lack of support, empathy, or understanding from his classmates and teachers. Ruth Colagiuri, a health professional, remarked on the common misconceptions surrounding the disease, stating, “People, including teachers, often think that they’re putting it on.”
As Dr. Friswell pointed out, a 10 month wait for a diagnosis is not okay. He emphasized the need to address these systemic matters in an equitable manner. “If we are going to train another 40-odd people in the next few years, we’re going to have to step up and train more,” he said.
Workforce Shortages in Paediatric Rheumatology
The lack of paediatric rheumatologists has hit a crisis point. In 2022, Australia graduated just five paediatric rheumatologists. The Australian Paediatric Rheumatology Group (APRG) chair Dr. Jonathan Akikusa has raised this very critical point. Few of these clinicians are full-time, and not all of them are employed full-time in public healthcare settings. “None are employed full time in public and quite a number do not do private work,” he explained. The real working staff might be more like 15 EFTP or less.
This deficit of specialists available has a direct effect on the ability of children to get timely care. With so few pediatric rheumatologists, many families have long drives or long delays for an appointment. This absence of specialists leads to enormous burdens for patients requiring acute care. Dr. Friswell points out that we need to train a greater number of these specialists into the healthcare system. He further recommends developing roles for such specialists in both hospitals and public health systems.
A Call for Action
This urgent and disturbing trend should be enough to provoke immediate action from health officials and policymakers alike. Dr. Friswell highlighted the critical need to train new rheumatologists. He demanded the establishment of new jobs in our public health infrastructure. He stated, “We then need the hospitals and the public systems in particular to actually create those jobs for people.”
Sinead’s story is a reminder that the lack of subspecialty paediatric rheumatology services in Australia has far-reaching personal and societal impacts. Approximately one in 1,000 children worldwide are afflicted with juvenile idiopathic arthritis. This points to a dire need for improved tools and resources to empower them.
Even after the hardest of times, Sinead is optimistic about her new chapter with art. She noted, “Even when my wrist is really swollen, I can still draw.” This resilience exemplifies the tough mindset of so many kids who are in the daily fight against chronic diseases. It equally shows the need for more support systems to help them receive timely and effective medical care.
