Juvenile Arthritis Foundation Australia describes the pledge as 'history in the making’.
The NSW government will invest $6.9 million over four years to boost statewide paediatric rheumatology services, the largest investment in the state’s history.
The money will fund an additional six senior clinicians to deliver improved access to highly specialised care and ongoing monitoring for children with juvenile arthritis in NSW.
This includes two paediatric rheumatologists, a highly specialised allied health team for a statewide service and a paediatric rheumatology advanced trainee position.
Juvenile Arthritis Foundation Australia (JAFA) founder, Associate Professor Ruth Colagiuri welcomed the announcement in this week’s NSW budget.
“This history in the making,” she said.
“This announcement rectifies generations of under-resourcing for this neglected disease, bringing it out of the dark ages and into the 21st century.”
Juvenile arthritis is one of the most common chronic childhood diseases, estimated to affect up to 10,000 children under the age of 16 in Australia, or one to two children per thousand.
Despite the prevalence being similar to diabetes and epilepsy in children, there is currently only one full-time equivalent paediatric rheumatologist in NSW, long waiting times and low awareness of juvenile arthritis, said Professor Colagiuri.
“This funding will be a game-changer, providing expanded and faster access to the highly specialised care to help our children avoid lifelong pain and disability,” she said.
“JAFA sincerely thanks the NSW government and Minister Park who have listened to our advocacy, clearly understood the need and committed the largest ever tranche of funding by any state government to improve the care of children with arthritis and related rheumatic diseases.”
Children with juvenile arthritis require assessment, treatment and regular review and monitoring which is best provided by a multidisciplinary paediatric rheumatology team. If not treated early and effectively, it has the potential to cause joint deformities and loss of vision.
The expansion of the multidisciplinary paediatric rheumatology team will help provide faster access to the highly specialised and comprehensive care that children with juvenile arthritis need and support them with acute episodes of the disease. This can include:
- Early diagnosis and treatment that may prevent permanent joint and eye damage
- Prescription of medications that reduce joint and eye inflammation and damage
- Therapy to prevent joint and eye damage, reduce and/or prevent pain, and optimise mobility
- Physiotherapy, occupational therapy, pain management, and psychological adjustment, and self-care education
NSW Minister for Health Ryan Park described the investment as “critical”.
“Juvenile arthritis can be debilitating for people who are living with it, and this investment means more children will be able to access the specialist care they need through the statewide paediatric rheumatology service,” he said.
“Eighty per cent of children with juvenile arthritis experience pain on a daily basis, which can directly negatively impact their education and participation in physical activities.
“This is a critical investment, the earlier we can diagnose and treat juvenile arthritis the better the outcome for the patients, and reduced risk of permanent disability.”
The investment will support the expansion of the existing Sydney Children’s Hospital Network team. Recruitment to the new roles is expected to commence in the coming months.
Radio 2GB journalist Chris O’Keefe broke the news on his drive time program this week. He revealed he had suffered from a form of juvenile arthritis from the age of 11.
“Every single joint in my entire body was inflamed – wrists, knees, ankles, you name it,” he told listeners.
“And it really, really hurt. At first it was dismissed as growing pains … it got progressively worse, and it took 12 months for mum and dad to get a proper answer from anybody and I was in a wheelchair at times.
“I was on crutches for most of it and the pain was so excruciating … I couldn’t live a normal life.”
Professor Colagiuri paid tribute to Mr O’Keefe for sharing his story publicly.
“Chris’s story is more than 20 years old but sadly is still very common,” she said.
“We are immensely grateful he has shared it and following the budget announcement we look forward to a more positive future for children with juvenile arthritis.”
