Establishing Paediatric Integrated Care for Children with Medical Complexity in a Fragmented Health System

Background: The Sydney Children’s Hospitals Network (SCHN) Kids Guided Personalised Services (GPS) Integrated Care Initiative supports families who are caring for children with medical complexity (CMC). These children have substantial health needs that require highly specialised care, often from multiple providers over their childhood and during transition to adulthood1,2. SCHN has worked with partner local health districts (LHD), primary health networks (PHN) and consumer support organisations to develop and test models of integrated care that support these children and their families to navigate the health system.

In parallel, the Kids GPS Care Coordination Service was established and embedded within the network’s Ambulatory Services. The Care Coordinators have developed comprehensive care plans with the families of 450 children with medical complexity, working across specialty teams, local health services and primary care. Since 2015 they have saved families over 50,000 kilometres in travel and 370 days of school absence, that would previously have been incurred to access care. In this financial year alone, more than 550 hospital encounters have been avoided for these children. The Paediatric Integrated Care Survey3 from Boston Children’s Hospital was used to assess the impact on the families and children involved.

The workshop will cover:

Working in partnership across organisational boundaries

Establishing the baseline – a mixed methods approach

Building enabling technology

The evolution of care coordination

Using Quality Improvement methodology to overcome resistance to change

Scale and spread of proven models

Measuring outcomes

Aims and Objectives: Avoid unnecessary hospital admissions, ED presentations and length of stay

Improve the coordination of care to streamline care and optimise the use of clinical resources

Improve the experience and capacity building of families

Optimise appropriate resources across all realms to ensure efficiencies of care (Right time, right place, right care, right team)

Enhance existing services and develop evidence-based models

 Format (timing, speakers, discussion, group work, etc)

In a 90 minute session, speakers will include the Integrated Care Program and Clinical Leads, and the Network Nurse Manager and Medical Lead for Ambulatory Services. The audience will be asked a series of questions to work through in small groups at intervals during the workshop:

How can consultation during formative evaluation be translated into research?

How can we replicate and build on existing models of Care Coordination, instead of designing and implementing in silos?

 What can paediatric integrated care interventions learn from successful integrated care models in the adult space?

Target audience: Clinicians and program managers implementing/evaluating integrated care interventions

Learnings/Take away: Successful integration needs multidisciplinary integration across the whole health system, with deep engagement of families and stakeholders, an equitable reach and evidence based standardised care4. Of fundamental importance for SCHN has been widely inclusive consultation and engagement with health care providers, parents of CMC and other key stakeholders at every opportunity. The comprehensive system change required for this Initiative’s success was implemented through the establishment of meaningful, respectful and trusting partnerships that include the SCHN and LHDs, PHNs, General Practitioners, consumer groups and families of CMC.