Kids risk permanent damage as juvenile arthritis is misdiagnosed
No one knows what causes juvenile arthritis but a lack of awareness, even among doctors, is leading to misdiagnosis while children suffer unnecessary pain and even permanent damage. In some cases, it is taking up to 10 months to get a proper diagnosis.
NSW
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A shocking lack of medical expertise and resources across NSW is leaving children with arthritis in pain and at risk of permanent joint damage.
There are about 3000 children with arthritis across the state but only two part-time paediatric rheumatologists are employed across the children’s hospital network.
Dr Christine Boros, chair of the Australian Paediatric Rheumatology Group, said that was seven times less than other states.
“These children can’t be seen in an appropriate time frame due to insufficient physician workforce in NSW,” Dr Boros said.
“If these children can’t get seen in a timely manner, they risk permanent disability from their arthritis.”
The delay in diagnosis is also leaving children in pain.
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Watching a video of 18-month-old Sofia Allen trying to walk is heartbreaking. The Goulburn girl began walking early but at around 14 months of age she began hobbling like an old lady and crying in pain.
“She couldn’t walk all of a sudden. In the morning she couldn’t walk properly, then she just wouldn’t walk at all and the doctors we went to said it was just growing pains,” mother Rachelle Allen said.
Ironically it was her obstetrician who picked up that Sofia’s knees were swollen, while Mrs Allen was pregnant with her next child.
“He asked me why I was so tired and I said Sofia doesn’t sleep, she cries a lot, and she had swollen knees,” she said.
“He said: ‘I think she has arthritis’ (but) even when we went back to the GP he said: ‘Arthritis doesn’t exist in kids’.”
Sofia, now aged five, is under treatment to control her symptoms.
No one knows what causes juvenile arthritis but a lack of awareness even among doctors is leading to misdiagnosis.
CEO of Arthritis NSW Sandra Vincent said the average patient spends 10 months struggling to be diagnosed from the onset of symptoms.
“Four out of 10 children with arthritis wait six months from symptom onset until diagnosis and 15 per cent wait 12 months,” Ms Vincent said.
“On average, these patients present their symptoms to four or five different professionals before the diagnosis is considered, showing that even health care practitioners don’t think that children can get arthritis.”
Last year, four-year-old Sunny Phillips had doctors baffled for months. His mother Rachel Phillips said the multiple misdiagnoses, which resulted in lumber punctures, bone biopsies and intravenous antibiotics, left her son traumatised.
“It was really scary, he was having high temperatures of 42C, they thought it was leukaemia or Ewing’s sarcoma and he was in hospital for over five weeks,” she said.
“They admitted us for odd infectious diseases. There was no diagnosis for five weeks until an amazing rheumatologist assessed him arthritis.
“Once he was treated, after just six hours of steroid treatment he was 50 per cent back to normal and then we were discharged within 24 hours.”
It took three years for 13-year-old Brooklyn Upoko to be diagnosed and, by the time she was, she had already suffered permanent damage. An earlier diagnosis coupled with correct medication could have saved her now permanently bent fingers.
The Blue Mountains teen began experiencing severe pain in her legs and hands at age six but doctors initially attributed her discomfort to acute growing pains.
“It wasn’t until the joints in her fingers were very obviously inflamed that juvenile arthritis was discussed,” Brooklyn’s mother Cindy Upoko said.
In 2013, NSW Health put together the model of care for the NSW Paediatric Rheumatology Network which found: “Paediatric rheumatology services in NSW fall well below national benchmarks and international guidelines and represent a major inequity in the NSW health system” and that “paediatric rheumatic diseases are a significant cause of acquired disability in children”.
Arthritis NSW said nothing had been done to address the issue.
“The outcomes of that have still not been met, there are only two part-time paediatric rheumatologists across the Sydney Children’s Hospital Network and rheumatology nurses are not being trained,” Ms Vincent said.
“There are no young paediatric rheumatologists coming through either. We really do feel our children are not getting the attention from the government they should. This is a lifelong disease and we’d like to see the money going into the Sydney Children’s Hospital Network.”
When questioned on the shortfall, NSW Health Minister Brad Hazzard told parliament earlier this month that: “NSW Health was represented on the Steering Committee for the National Strategic Action Plan for Arthritis, which includes a number of strategies aimed at improving the care of children with Juvenile Idiopathic Arthritis.”
For more information arthritisnsw.org.au