Current JIA services in NSW fall well below national and international service benchmarks. Children and young people with paediatric rheumatology disease in NSW are at risk of poor long term health outcomes and disability, unless they receive prompt diagnosis and early treatment and intervention. The lack of paediatric rheumatology services in NSW represents a significant health inequity for NSW residents.
The Agency for Clinical Innovation (ACI) Musculoskeletal Network established the Paediatric Rheumatology Working Group to consider the needs of paediatric rheumatology services in NSW. The Working Group was given the task of determining a model of care (MOC) that would provide international best standards of practice and meet the needs of families and children affected by paediatric rheumatic disease.
The Working Group was composed of paediatric rheumatology health professionals, peer support groups, transition experts, and consumers.
In line with international best practice and to meet the needs of families and children affected by paediatric rheumatic disease, the ACI Musculoskeletal Network recommends the establishment of the NSW Paediatric Rheumatology Network (NSWPRN) and a Foundation Centre for Paediatric Rheumatology.
The NSWPRN will address the inequity in access and service that currently exists when paediatric rheumatology is compared to other chronic childhood diseases.
To read more about the Model of Care, please see the attached PDF.