Our GP said arthritis doesn’t exist in kids
Ignorance and inadequate expert help leaves children in pain with bleak futures
SOFIA Allen began walking early, but at around 14 months of age she started hobbling like an old lady and crying in pain.
“She couldn’t walk all of a sudden,” mum Rachelle Allen said.
“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.”
It was only Mrs Allen’s obstetrician who eventually diagnosed what was wrong with the little girl from Goulburn.
“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’.”
For thousands of kids across NSW, sadly it most certainly does.
Sofia, now aged five, is under treatment to control her symptoms ms but watching a video of her at 18 months trying to walk is heartbreaking.
No one knows what causes juvenile arthritis but a shocking lack of medical expertise and resources across NSW is leaving children with arthritis in pain and at risk of permanent nt joint damage.
There are about 3000 children with arthritis in NSW but only two part-time paediatric rheumatolomatologists are employed across the e children’s hospital network.
Dr Christine ristine Boros, chair air of the Australian n Paediatric Rheumaeumatology Group, roup, said that was seven times mes less than other er states.
“These e children can’t be seen in an n appropriate time frame due e to insufficient nt physician n workforce e in NSW,” ” Dr Boros said.
“If these children can’t get seen n in a timely manner, ner, they risk permanent disability from their arthritis.”
The delay y in diagnosis is also leavin leaving ng g children in pain.
CEO of ArA Arthrirthritis NSW SaS Sandra andra Vincent t said the average pat patient i spends d 10 mo months struggling to be dia diagnosed from the onset ons of symptoms.
“Four “out of 10 children chil with arthritis wait wai six months from symptom sym onset until diagnosis diag and 15 per cent wait wa 12 months,” Ms Vincent Vin said.
“On average, these patients p present their symptoms s to four or five fiv different professionals sio before the diagnosis dia is considered, showing sh that even health care practitioners don’t think thi that children can ca get arthritis.”
Last La year, Sunny Phillips Phi had doctors baffled baf for months.
His mother Rachel Ra Phillips said sai the multiple misdiagnoses, mis which whic resulted in painful painfu lumber punctures, punctur bone biopsies a and intravenous antibiotics, lef left her then fouryear-old son trauma traumatised.
“It “I was really ll 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-yearold Brooklyn Upoko (pictured left) 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 don done t to address dd the h 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.” The condition affects roughly three in 1000 children.
In the morning sheh couldn ’t walk properly, then she just
wouldn’t walk at all
Sofia’s mo ther Rachelle Allen
Sofia So Allen at 18 months old, with her mum Rachelle, after cortisone treatment for her he er juvenile arthritis in hospital a and, below left, Sofia, now five, with brother Casey. Rachel Phillips and son Sunny, whose arthritis was not diagnosed for months. Picture: Sam Ruttyn