The Rare Care Centre cross sector clinical service at PCH, established in October 2022, has supported 243 children and their families with rare and undiagnosed diseases (RUD). The cross-sector care coordination model, addresses fragmented care, communication gaps and difficulties accessing primary and tertiary services through navigation, coordination, integration and advocacy. The Rare Care Centre cross sector clinical service is time-limited, and patients concurrently remain under their existing care team to avoid duplication of services.
Nursing leadership within the model of care combined with advanced care coordination skills has enabled this unique cross sector model to optimise collaboration and outcomes between health, education, disability, financial welfare and social support areas.
Integration of patient and family centred goals into multiple government departments and community sectors have resulted in a $785,000 saving to the tertiary health system for the first 51 patients discharged from the Rare Care program. An emphasis on community integration of services is demonstrated by significant outcomes including increased school supports, access to welfare and disability benefits, access to GP’s and connection to local, national and international support groups and resources. This has resulted in 18% decrease in parental/carer stress and 25% increase in parental carer wellbeing.
Strategies implemented by the nursing leadership have ensured that the Rare Care Centre cross sector clinical service is able to provide effective care coordination, navigation and case management that has driven a clear program focus, monitoring of program delivery and measurement of outcomes to evaluate the impact of the program.