Children with health complexity represent less than 1% of the pediatric population in BC, but account for up to 33% of child health provincial spending, and more than half of pediatric hospitalizations.
According to a framework developed by the medical community, children with health complexity are understood to:
- have significant and chronic condition(s) that affect multiple body systems
- have major functional limitations (require significant support with basic functions and daily activities, such as eating and moving)
- have substantial health-care needs (depend on parents/caregivers to have specialized knowledge and skill to care for them, often require round-the-clock care, and rely on medical technology)
- frequently use health-care and social systems (multiple professionals in and outside the health system are involved in their care, and social determinants of health affect their health outcomes).
“Advances in medicine and technology are making it possible for more children to live with complex medical conditions, and to live longer lives. Each of these children has unique medical conditions and needs, so getting a really good understanding of those needs is critical to designing the right set of services.” Tessa Diaczun, nurse practitioner, Slocan project clinical planning team
During the business planning phase, the Slocan Site Redevelopment Project team, along with its partners and leaders, developed a vision for the new facility and its corresponding services.
These services will centre around care coordination, as well as training and support for parents, caregivers, and community professionals. Children and families will also be able to stay at the centre to learn new care techniques, and receive support through transitions such as going from the hospital to home, starting at a new school, or moving to adult care.
The new clinical programs will not duplicate services already provided at BC Children’s Hospital, but will aim to address important gaps in care.
Currently, the team is taking that vision and developing the various aspects of the program in greater detail.
The new centre for health complexity will be the first-of-its-kind in Canada, and one of just a few in the world. Designing the services is therefore a challenging task when few guiding blueprints exist. This is why the Slocan project team has turned to families, clinical leaders and staff, and partner organizations to collaborate in this work.
As a first step, the Slocan team formed a working group to outline the eligibility criteria for the program, and map out the process for referral and intake. The working group included clinical professionals from 13 BC Children’s Hospital areas including the NICU, physiotherapy, complex care, nursing support services, and psychiatry.
BC Children’s Hospital staff joined forces with partners from Canuck Place Children’s Hospice as well as two family advisors.
“These children are seen by so many different clinics at BC Children’s Hospital, and by countless other service providers – pediatricians and nurses in community, social workers, school support staff. At the same time, we know there are gaps in services, especially around coordinating care. That’s why it’s so critical for partners to gather around one table to design the best approach for filling gaps in care.” Sarah Bell, chief operating officer, BC Children’s Hospital
It’s also been very fruitful to have care providers working alongside parents of children with health complexity.
“I am so glad we are part of the clinicians’ group. I think it is very valuable for all who are involved to hear our voices, straight from the source.” Darlene, parent of child with complex health-care needs and member of working group
The working group met every two weeks for three months to discuss how to develop an intake and referral service for the program that would be clear, consistent, trauma-informed, and culturally safe.
The draft outcomes from the working group were then reviewed and discussed in two workshops with the Patient and Caregiver Advisory Group for the Slocan project, and will be continually revised until the opening of the centre.
The Slocan project team is grateful to families and staff for sharing their time and lived experiences in these collaborative sessions; their engagement is essential to creating an effective and innovative program of care.
To learn more about the project, visit the project pages on the BC Children’s Hospital website, sign up for our newsletter, or contact the team at slocaninfo@phsa.ca.
