NSW juvenile arthritis care behind national benchmarks, prompting funding calls
Brooklyn Pangemanan uses slime to exercise her hands when her arthritis flares up. (ABC News: Mazoe Ford)
New South Wales is behind international guidelines and Australian benchmarks when it comes to diagnosing and caring for children with juvenile arthritis, the state’s leading arthritis charity has said.
- Juvenile arthritis causes pain and swelling in joints and can affect eyesight
- It’s more common than childhood diabetes and just as common as cerebral palsy
- Families want more education for medical professionals to be able to diagnose the disease
Arthritis NSW is calling for the State Government to significantly increase funding and education for doctors and nurses treating the condition, which affects thousands of children around the state.
Juvenile arthritis, which causes pain and swelling in joints and can affect eyesight, is more common than childhood diabetes and just as common as cerebral palsy.
“Currently there are 3,000 children across NSW diagnosed with juvenile arthritis and two paediatric rheumatologists part-time and one nurse to support them,” Sandra Vincent from Arthritis NSW told the ABC.
“We’re not just sitting behind international standards, we’re well behind other states in our own country.”
In 2013, the NSW Government commissioned a report which came to the same conclusion, but Arthritis NSW said little had changed in the five years since.
Ms Vincent said current funding from NSW Health meant the two doctors see public patients across three sites — The Children’s Hospital at Westmead, Sydney Children’s Hospital at Randwick and the John Hunter Children’s Hospital in Newcastle.
“The paediatricians and the rheumatology departments are very frustrated by not being unable to support the numbers of kids they need to as quickly as they’d like to,” Ms Vincent said.
A spokesperson for NSW Health did not comment on whether the state falls behind international and Australian standards but said there had been “a number of enhancements to paediatric rheumatology services” since the 2013 report.
He said these included more staff being recruited and trained in the state’s public hospital network, an online information manual to assist GPs, and a website for the community.
“This is phase one of changes to paediatric rheumatology in NSW and we are committed to continuing to improve the services and outcomes for children living with rheumatic conditions across the state,” the spokesperson said.
Arthritis not just ‘an old person’s disease’
Ms Vincent said beyond the hospital network, it was important that GPs become better educated about the condition.
“Often GPs are not aware of what they are looking at, so it is quite difficult to get a child referred on to a paediatric rheumatologist quickly, and because they’re not referred on quickly the joints can be damaged,” Ms Vincent said.
“It’s not at the forefront of many GPs’ minds, they’re not even considering arthritis because they see it as an old person’s disease.”
That is exactly what Blue Mountains mother Cindy Upoko thought when her daughter Brooklyn Pangemanan, 12, was diagnosed with juvenile arthritis.
“Brooklyn was having pains in her legs and we just thought it was growing pains and we took her to the GP and they thought the same thing,” Ms Upoko said.
Simone Piefke’s daughter Kolby was diagnosed with arthritis when she was 2. (ABC News: Mazoe Ford)
“We had about six visits to different GPs in two years before her diagnosis and by this time she already had permanent joint damage in her fingers because it hadn’t been diagnosed.”
Brookyln said she had learned to deal with the pain and had made some of her physical therapy fun by playing with slime.
“It kind of stretches [my fingers] out so they’re not all stiff and sore, and then it’s easier because I don’t have to do all the hand exercises because they’re kind of boring,” she said.
Simone Piefke’s daughter Kolby Wright was just two-years-old when her arthritis flared up in her knee for the first time.
“It was really sudden, it happened overnight, it was such a dramatic change,” Ms Piefke said.
“She was fine the night before and when she woke up in the morning she was unable to walk.”
The Sydney mother took her daughter to a hospital where doctors said it was probably a knee injury and sent her home.
Feeling something was not right, Ms Piefke started doing some research on the internet, then returned to the hospital suggesting Kolby be tested for juvenile arthritis.
The toddler was diagnosed after those tests.
Both girls’ families say they believe more medical professionals need to be educated about spotting the symptoms of juvenile arthritis so it can be diagnosed and treated earlier.
NSW Health said it was developing and implementing a state-wide approach “to work more closely with GPs and other health care professionals” to be able to treat children closer to where they live.