Model of Care for the NSW Paediatric Rheumatology Network
This model of care supports the management of children and young people with rheumatic diseases in NSW.
Paediatric rheumatology diseases include juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, juvenile dermatomyositis, scleroderma and a number of other debilitating conditions.
The model provides a solution for the NSW health system through:
- education of health professionals to encourage early recognition of disease
- appropriate and timely referral
- local expertise sharing in collaborative networks that allow disease management close to home where appropriate
- support and education to encourage self-management skills in children, young people and their families and reduce long term reliance on medical services.
The model of care details children’s and families’ experiences of care and provides a comparison to national benchmarks and international guidelines.
We worked closely with Arthritis NSW and Sydney Children’s Hospital Network, parents of children with rheumatic disease and young people with the disease to better understand their experience and inform this model of care. These experiences are captured in our qualitative study of consumer perspectives.
- The Paediatric Rheumatology Network (within the Sydney Children’s Hospital Network) was established in 2015 to improve care for children and young people with rheumatological diseases and implement this model.
- A health pathway for juvenile idiopathic arthritis was developed in collaboration with South Eastern Sydney Primary Health Network.
- Following implementation of the model, Sydney Children’s Hospital Network has employed a Paediatric Rheumatology Network Clinical Nurse Consultant who works at both The Children’s Hospital at Westmead and the Sydney Children’s Hospital, Randwick.
- Paediatric Rheumatology Network NSW
- KidsConnect - a run and interactive online platform where kids can meet in a secure digital space, play Minecraft and chat through Discord. Open to young people aged 7 to 17 who are living in Australia with juvenile arthritis. Minecraft games are run and moderated by Juvenile Arthritis Foundation Australia and are designed to help kids with juvenile arthritis connect with each other in a fun and safe online environment.