Rural Kids Guided Personalised Service (RuralKidsGPS)

Children and young people (CYP) who are medically complex have multiple and/or significant chronic health problems. This group represents approximately 10% of patients attending children’s hospitals, but accounts for 60% of expenditure.^1,2 CYP who are medically complex require support from different health care teams, which are often based across more than one service and location.

In the absence of planned and coordinated care for these CYP, missed and/or duplicated care increases costs for the health system and out-of-pocket expenses for families. ³ The cost of uncoordinated care is estimated to be up to 35% higher than that of coordinated care. ³

Supporting children with complex needs

Supported by the Translational Research Grant Scheme and Paediatric Priority Funding initiative, Rural Kids Guided Personalised Service (RuralKidsGPS) has embedded 0.5FTE paediatric care coordinators in Murrumbidgee, Northern, Southern and Western NSW LHDs to support children with complex health conditions and their families. Working with local teams, the paediatric care coordinators find opportunities to integrate and share care, deliver virtually enabled care, build the ability of the local work force to deliver care closer to home, streamline appointments, avoid unnecessary hospitalisations and prevent ED attendances.

RuralKidsGPS was co-designed with parents and professionals as an innovative child-centred model of care for CYP living with medical complexity in rural and remote regions. The program established paediatric care coordinator roles in December 2021 and February 2022 across four rural NSW LHDs. Referral sources include local paediatricians, allied health services, Aboriginal liaison, tertiary hospitals and other specialist teams.

After deciding eligibility for the program, paediatric care coordinators work with families and local and tertiary care teams both at SCHN and across states/territories to meet the CYP’s needs through the development of shared care plans and technology-enabled healthcare. Children stay within the service until their care plan meets their needs, the family can self-manage without care coordination or have declined further support or has transferred to adult services.

Care coordination essential to delivering equitable access

In 2024, the Sydney Children’s Hospitals Network awarded RuralKidsGPS with the Quality and Innovation Award. The formal impact and implementation evaluation of RuralKidsGPS will be available in 2024. To date, the team has found that:

• Paediatric care coordinators are a trusted source of information for families and are their “go to person”, “someone who is part of the system” who can support them to navigate the health system
• Most (>80%) children with medical complexity referred for care coordination require complex care coordination among tertiary, local health district and primary care
• This program is reaching CYP with medical complexity including those from priority populations
• Paediatric care coordination is essential to delivering more fair access to care to children with medical complexity and their families in rural NSW.

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