Australia 'probably not' on track to meet paediatric rheumatology 2030 workforce target
Dr Friswell said juvenile idiopathic arthritis affected about one in 1,000 children worldwide, but the average time from symptom onset to diagnosis was 10 months.
"Ten months is way too long," he said.
"I'm still seeing patients who have had symptoms for a year, two years, three years, and by the time they come, there's already established damage to their joints, and that we can't do much about."
Ruth Colagiuri, founder of the Juvenile Arthritis Foundation Australia (JAFA), said early diagnosis was "critical" to avoid lifelong pain and disability.
"It's an auto-inflammatory disease that attacks the joints and the eyes and sometimes the skin and internal organs," she said.
"[Children] might be OK one day — and two days later, they might be barely able to walk … barely able to get out of bed, limping around.
"People, including teachers, often think that they're putting it on."
Fourteen-year-old visual artist Sinead Gannon said the waitlist for paediatric rheumatology in the public system was "very long", but they were able to get a diagnosis on the spot from a private clinician.
The 2024 Young Archie finalist said growing up autistic helped them to mask pain caused by juvenile idiopathic arthritis, but the condition significantly affected their mental health and ability to create art.
"I couldn't walk, my wrist was really sore and that was around the time when I had to stop drawing," they said.
"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."
A 2022 parliamentary inquiry into childhood rheumatic diseases recommended Australia triple its number of paediatric rheumatologists by 2030 to meet the international standards of one full-time equivalent paediatric rheumatologist per 200,000 children, or about 32 clinicians.
There were 20 paediatric rheumatologists in 2022, according to the inquiry, but the 2021 Australian Rheumatology Workforce survey said there was a shortfall of about 41 clinicians, and 61 part-time equivalent paediatric rheumatologists were needed.
As of 2025, Australia had increased its number of paediatric rheumatologists to 27, according to Australian Paediatric Rheumatology Group (APRG) chair Jonathan Akikusa — but there were none in Tasmania, the Northern Territory and Canberra.
A small number of "dedicated adult rheumatologists" were filling the gap in those states and territories, he said.
"None are employed full time in public and quite a number do not do private work, so the effective paediatric rheumatology consultant workforce is probably only about 15 equivalent full-time [positions] or less," Dr Akikusa said.
In response, a spokesperson for the Tasmanian health department said the Royal Hobart Hospital provided a "fortnightly paediatric rheumatology clinic, which was run by a rheumatologist — who had extensive paediatric experience — and a specialist rheumatology nurse practitioner".
"A paediatric rheumatologist from Melbourne visits Tasmania as a Visiting Medical Specialist (VMS) four times a year – twice in Hobart and twice in Launceston," the spokesperson said.
In the Northern Territory, a spokesperson for NT Health confirmed it did "not currently employ a paediatric rheumatologist", but that the territory's paediatricians consulted with interstate paediatric rheumatologists to provide appropriate care.
"There is an ongoing, nationwide shortage of this medical specialty," the spokesperson said.
In the ACT, a Canberra Health Services spokesperson said Canberra Hospital had an "outreach paediatric rheumatology service" which was provided by Sydney-based specialists under an agreement with Sydney Children's Health Network.
Dr Friswell said Australia was "probably not" on track to reach the 2030 paediatric rheumatology workforce target outlined in the inquiry.
"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.
"We then need the hospitals and the public systems in particular to actually create those jobs for people."
A spokesperson for the Federal Health Department said it provided $180 million per year for specialist medical training, including paediatric rheumatology.
It said the department was undertaking supply and demand modelling which would be complete by the end of year.
Jennifer Martin, President of the Royal Australasian College of Physicians, said there was a "clear shortage" of paediatric rheumatologists.
"While the RACP is ready to train more, governments need to create the necessary positions," she said.
Dr Friswell said until recently, people living in Australia wanting to train in paediatric rheumatology had to travel overseas.
And although there were now four training sites across the country — in Adelaide, Melbourne, Brisbane and Perth — he wanted to see five or six.
"It is getting better, but it needs to get better quicker," he said.
Sinead Gannon said they had a good support system and encouraged other young people with juvenile idiopathic arthritis to keep pursuing their hobbies.
"Even when my wrist is really swollen, I can still draw," they said.
"I can still express myself creatively in other ways.
"Don't be mad at yourself, don't think that you're a burden … because of your disability."
Hashtags

Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles


7NEWS
12 hours ago
- 7NEWS
Best sunscreen for kids: Reef-friendly sunscreen winning praise from parents: ‘Absolute must-have'
Shoppers can't get enough of a reef-friendly sunscreen brand that kids actually like wearing. Little Urchin was launched by Aussie dad Christopher Matthews, who wanted an alternative to the chemical-laden SPF brands often used on young children. The result is a dedicated range of natural skin care products, including reef-safe sunscreen, natural moisturisers and a natural tinted sunscreen that parents have described as 'must haves' for their babies and young children. According to Christopher, the name Little Urchin was inspired by the sea urchin, a remarkable creature that produces its own natural sunscreen to protect its young. One of the best-sellers in the range is the Kids Natural Clear Zinc Sunscreen SPF50 ($29.95). This currently has a five-star rating from happy customers, who have written comments like 'amazing' and 'fantastic'. 'My kids like to put it on, not like most zincs, where it's thick and heavy. It applies like normal suncream, but it's still waterproof and provides long protection,' one shopper wrote. ' This is my favourite product ever. It's perfect for all my children, even my daughter who has severe eczema,' another added. Others highlighted that they love the Little Urchin sunscreens because they are easy to apply to their children, as opposed to other brands which kids hate due to stickiness. The Natural Face Sunscreen SPF 50 Clear Zinc ($24.95) is another bestseller. This has been designed specifically as a sunscreen for your face and also boasts five-star reviews. The brand also has zinc sticks and SPF lip balms — which prove invaluable for SPF top-ups on the go. ' Little Urchin is proudly Australian‑made and owned, crafting natural sunscreens, skincare, and lip care that are as kind to your skin as they are to the planet,' founder Christopher tells Best Picks. ' Every product is created with the same care and intention as that very first formula; because I still believe that what we put on our skin should be safe, effective, and inspired by nature.' According to the Cancer Council, when applying sunscreen, you need at least one teaspoon per limb, one for the front of the body, one for the back and one for the head. A full body application for an adult should be at least 35mL or seven teaspoons. It's important to remember that the sun and UV levels are harsh, whether it's sunny, cloudy or raining. With this in mind, wearing a hat, sunglasses and applying sunscreen every couple of hours is an essential way to avoid skin cancer and prevent the signs of ageing.

ABC News
15 hours ago
- ABC News
Teenager Riley Turnbull wants young people to talk about organ donation
Riley Turnbull was getting ready to play a soccer game last year when he was given news that would change the trajectory of his life. The then 18-year-old from Mount Gambier, in regional South Australia, had been sleeping poorly, was constantly tired and drinking excessive amounts of water. He went to his doctor and was told to take a routine blood test, which he put off for weeks. But when he received the results, he found out his kidneys were operating at 25 per cent of their function. "Throughout last year I was going OK once I found out, having regular appointments, and then I slowly got worse and worse. "In November I had an operation to have a peritoneal dialysis tube put in my belly and start dialysis because my levels were under 10 per cent." Mr Turnbull was initially told a kidney transplant would need to happen in the coming years. But his condition deteriorated quickly and it became clear he would need a new kidney soon. "I travelled to Adelaide to start haemodialysis. It filters your blood and cleans it out," Mr Turnbull said. "Luckily when I was up there, that's when I got the phone call there was a kidney waiting for me. "I was at 8 per cent kidney function during my last blood test before my transplant." Overall, Mr Turnbull was in Adelaide for three months post-transplant. He spent 70 days straight attending hospital and underwent a further eight procedures. As a sport-mad teenager, he had never thought about organ donation before he fell ill. Now, he wants to use his story to encourage conversations among people of all ages about joining the organ donation registry and discussing plans with family and friends. "It's not just important for people like me receiving organs, but you can donate most parts of your body," he said. When a person dies and qualifies to have their organs donated, their family is given the final say on how to proceed. DonateLife clinical manager Amanda Stewart said 80 per cent of eligible donors who discussed their plans with family before their death were given permission to donate. It drops to 40 per cent if the family is unaware of their wishes. "There's a taboo around death and dying, but it's as simple as having a discussion around what your wishes are," Ms Stewart said. "If you've had the conversation and gone online and registered, then that burden is relieved for them. "They know what your wishes would've been and they're able to support them." Now back in Mount Gambier after three months recovering from surgery, Mr Turnbull has returned to his soccer club Gambier Central to advocate for organ donation. He is working with Danni Horton, a volunteer at the club who has been on her own organ transplant journey. Ms Horton was first diagnosed with kidney failure in 2003, when she was 21 years old. It would take her until 2021 to receive a kidney transplant; in between, she gave birth, received extensive dialysis and was diagnosed with a blood clot. "We can never thank them [donors] in person [for] … what they've done for my family, not just me," Ms Horton said. Ms Horton has known Mr Turnbull since he was a baby and has helped him through the organ transplant journey. "I'm so proud of him and how he's dealing with it all," she said. "He's just doing such a great job, getting out there and promoting organ donation awareness." Mr Turnbull has had to accept he will never go back to playing soccer. But now he is back home and in recovery, he has set his sights on returning to sport. "I hope to travel around Australia with my girlfriend next year," Mr Turnbull said. "There's also the Transplant Games. [I want] to play sport again.

Sydney Morning Herald
19 hours ago
- Sydney Morning Herald
Deanna tried IVF with the lot. None of the costly, unproven add-ons worked, so she went back to basics
Australia's health ministers last month ordered a rapid review of the nation's assisted reproductive sector following a series of bungles and scandals, to determine if greater regulation can increase the safety and transparency of fertility clinics. Victoria is leading the national review, and a Victorian government spokesperson confirmed IVF add-on services would be included in consideration of existing or potential new legislative framework. 'A dedicated team has been established to undertake the review and will report back within three months,' the spokesperson said. Australia has the fifth-highest rate of IVF, fuelled by the strength of the commercial fertility sector and Medicare rebates with broad eligibility criteria that mean patients can continue coming back for cycles regardless of their chances of success. Four out five women accessing IVF also use add-on services during their treatment, which can greatly add to their costs as well as the profits and marketability of the clinics, but which may not increase the chances of success. An analysis of the non-core services being offered to Australian fertility patients by University of Melbourne researchers, prepared for this masthead, highlights the high costs and lack of evidence supporting services commonly upsold to potentially emotionally vulnerable patients. It reveals 44 treatment types ranging from free to $5000, and taking in everything from vitamins to plasma being injected into ovaries, genetic testing of embryos, injecting a single sperm directly into an egg and endometrial scratching, have little to no influence on the chances of having a live birth, pregnancy or miscarriage. Loading The analysis follows the launch of the Evidence-based IVF website in April, which is led by the University of Melbourne's Dr Sarah Lensen as an effort to better inform people undergoing IVF of the unproven add-ons. 'There are research articles out there on these different add-ons but the quality, broadly speaking, is really poor. Different providers are willing to draw the line in different places in terms of how much evidence they think they need before they're willing to offer or recommend something,' Lensen said. 'Sometimes there's a cost for special IVF conception vitamins or whatever, but they're probably pretty low risk, and they're not as big of a deal. 'Down the other end of the spectrum, there's the super-expensive $1000 treatment options that also come with risks because they're playing with patients' immune systems or injecting things into their ovaries that we don't really know what's going to happen. 'A lot of the add-ons that get offered slip through the cracks in terms of the existing regulatory system.' In Deanna Carr's case, she underwent two normal but unsuccessful cycles of IVF before adding steroids, blood thinners, aspirin and clexane during two further cycles. Determined more had to be done, Carr followed advice from online fertility forums and moved to one of Australia's largest clinics to seek out a specialist known for pushing the envelope. 'There's lots of conversation about which specialists to see, because these specialists are willing to be a lot more experimental – and, when we say experimental, it is literally meaning experimental. 'They're willing to try more add-ons, regardless of how inclined the research is to say that it doesn't work.' Tests at that clinic found Carr had a partial DQ Alpha gene match which may make her body more likely to attack or reject an embryo, though research suggests treatment for it does not significantly improve IVF success rates. To address the issue, a team of specialists gave Carr lymphocyte membrane immunotherapy, in which up to eight vials of blood were taken from her husband so his white blood cells could be extracted and then injected into her arm to correct her immune system with material that is genetically matched to their embryo. 'It's like weird blood brother stuff, and quite expensive,' Carr said. She was given a toxic cocktail of drugs including naltrexone and tacrolimus, which are more commonly used to treat cancer, as well as an intralipid infusion to 'knock out' her immune system. Added together, this cycle cost more than $8000. 'It didn't work. It ended up the same way all our other cycles ended,' she said. Carr's specialists then offered to step up the add-on treatments even further. They proposed a $5000 EMMA and ALICE test which would have seen Carr undergo another full IVF cycle but, rather than try for a pregnancy, the doctors would take a biopsy of her uterus to see if bacteria were present that might be impacting her pregnancies. If it found abnormalities, Carr was then to be prescribed cefalexin – a common antibiotic used for infections and cheaply available on the Pharmaceutical Benefits Scheme. 'It's what the doctor would give you for a sore throat. Why would they make me pay five grand for it? Why not just give me the medication?' Rather than spending $12,000 for another add-on-laden IVF cycle, Carr consulted the Evidence-based IVF site and realised there was little science to support the proposed treatment, then switched clinics to undergo a traditional – and successful – cycle. 'You get persuaded to add on because you obviously want it to work, and you're already spending so much, so this can financially tip you over the edge,' she said. 'A lot of these IVF companies know that. It does feel really unethical [because] a lot of the time people aren't being provided with proper information around the add-ons that are being suggested and the efficacy around them. And people are really desperate, so they'll just keep saying yes to things.' A Macquarie University professor of bioethics in the discipline of philosophy, Wendy Lipworth, last year published a study based on interviews with 31 doctors working in assisted-reproductive technology to see what their 'moral justification' for using add-ons was. The specialists' responses revealed evidence and innovation was not the driving consideration in many instances, and that regulatory reforms to only allow the use of unproven treatments in the context of formal scientific evaluation might be required. Lipworth said add-ons were often marketed as a point of difference between clinics, which may undermine individual doctors' ability not to offer them for patients. As a result, she believes any new regulation would need to focus on the clinics and what they are offering, rather than individual doctors wanting the best for their patients. 'Generally, there should be some expectation that they might at least be beneficial, even if there's no good evidence for it. That's a real balancing act,' Lipworth said. 'In fertility, the balance is going a little too far in the direction of too many things being offered without enough evidence. 'There might be room for some more regulation of how the products are advertised, how patients come to know about them, what they charge for them and so on. But the very act of using them is not in and of itself in any way unethical. 'What really matters is that people know that they're getting treatment for which there is not good evidence, and that they are able to make informed decisions about whether or not to use them. Loading 'That doesn't mean that anything goes and that patients should necessarily be able to walk into a doctor's surgery and say, 'my friend saw this on Facebook', or 'my friend used this and she got pregnant, therefore I want you to offer it to me'. 'There is still a duty of care to offer things that you, at the very, very least, are absolutely certain won't do harm.' Add-ons are not the only factor separating clinics, or the fees they charge. Lensen said premium clinics typically provide continuity of care so patients always get to see the same specialist and nurse, as well as improved customer service, which may not be provided at low-cost or public clinics. And, in many cases, the proliferation of add-on services is often more patient-driven than due to marketing by doctors or their clinics – which is why Lensen believes reforms are even more important, so regulators can step in when doctors fail to uphold their responsibility to dissuade patients from treatments that may not be in their best interests. 'The evidence is not that strong, but the patients are asking for it, or the clinic down the road is offering it, and so they end up using it too. But then when the research community does come out with robust evidence later, I think they do act,' she said. 'So it would be nice if we said from 'now on, no more offering a high dose of corticosteroids to patients. If you want to do that, they can take part in a placebo controlled trial'. 'A lot of the time, though, regulations are not aligned with the commercial interests of whoever they're trying to regulate – that's the whole reason we need them.'