Our GP said arthri­tis doesn’t ex­ist in kids

Ig­no­rance and in­ad­e­quate ex­pert help leaves chil­dren in pain with bleak fu­tures

The Sunday Telegraph (Sydney) - - NEWS -

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

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