Lack of specialists in juvenile arthritis a barrier for children in need of diagnosis and treatment

From the outside, Rohan Penny-Bell seems like a regular six-year-old.

He loves colouring in, drawing and playing with his friends.

But Rohan lives with juvenile arthritis, which means he is constantly battling aches and pain.

The condition is one of the most common chronic diseases affecting Australian children and can impact both growth and development, and cause limitations to mobility.

Months of waiting for diagnosis

Rohan’s mother, Donna Penny, will never forget the day it first became clear that something was not right with her son.

Rohan was 18 months old and an educator at his daycare had called to say Rohan had woken from a nap and couldn’t walk.

“We were worried and shocked and went to pick him up,” Ms Penny said.

“We took him to Canberra Hospital but were sent away without being admitted or getting any answers.”

Rohan continued to complain about a sore knee and was getting around with a limp that only got worse.

After multiple hospital visits over three months, Rohan was referred to a paediatric rheumatologist in Sydney who was able to finally give the family a clear diagnosis.

“I think we just never expected that we’d spend a month in hospital and emerge with no answers,” Ms Penny said.

Rohan manages his condition with regular physiotherapy, hydrotherapy, speech pathology and occupational therapy as well as steroid injections and other medications.

“We’re lucky that Rohan is a National Disability Insurance Scheme participant because these things are really expensive,” Ms Penny said.

Another considerable expense for the Bell-Penny family is the regular travel to Sydney, where Rohan has appointments with his paediatric rheumatologist.

The problem is that there are no paediatric rheumatology services in the ACT, so he is unable to get the care he needs close to home.

“We’re just lucky we’re in jobs where we’ve got sufficient leave.”

A scarcity of specialists

Kathleen Tymms is a Canberra-based rheumatologist who can and does treat children as part of the private system, but closed her books years ago – she is also set to retire shortly.

She said the ACT government should provide the funding necessary to employ a paediatric rheumatologist to work in the public hospital system on a permanent part-time basis.

“We need to have a public hospital appointment because you need a multidisciplinary clinic to look after these children,” Dr Tymms said.

“They might not need to go to the multidisciplinary clinic all the time but especially when a diagnosis is occurring and when flares and relapses occur.

“So, you can’t just do it in private practice – it has to be a public hospital clinic.

ACT Health Minister Rachel Stephen-Smith said the government was committed to improving services and was working with the Sydney Children’s Hospital Network to establish a shared-care model, which would involve flying a specialist from Sydney to Canberra on a regular basis.

But she said having a specialist located in Canberra permanently was unlikely.

“My understanding is that there are only about five paediatric rheumatologists in the whole of New South Wales so it’s unlikely that we would have someone base themselves here permanently,” Ms Stephen-Smith said.

“But what we do in those circumstances is have someone come in and do regular clinics and then be supported by a specialist nurse, an allied health professional, a care team that can provide those supports for the family in between times that the specialist is visiting.”

Ms Stephen-Smith said it was unclear when the services would be available or how often.

Ms Penny said having specialist care available locally would have made a significant difference to how the past four years had played out for Rohan.

“It would have saved a lot of money and meant a lot less angst.”