This blog post deserves a long and well written story. Unfortunately today is not the time for it. I don’t have the head space, nor the desire to sit at the keyboard (*gasp*), but I don’t want the opportunity to pass without sharing this recent news story on complex care coordination here in Ontario.
Coordination of Complex Care has many different titles and is supported in many different ways (or not at all) across the provinces and within Canada. Comprehensive Care and Supported Care, are also titles used to describe the type of programs.
These programs support children with complex and rare medical conditions. These children need support in the hospital to coordinate the large number of specialists involved in their care, coordinate their medically complex conditions, and also provide support in the community (nursing, community care access centre, therapies, OT, medical equipment). These are children with more than 5 different medical conditions, several specialists involved in their case, and technology dependant. They are children who are surviving challenging diseases and conditions identified in infancy and living longer thanks to advances in medicine.
When we hear ‘complex care’ or ‘care coordination’ we often think of the elderly population and the pediatric community is often forgotten or at best – overlooked. Although very small in number (less than 1% of children), children with medical complexity account for one-third of child health spending in Ontario (Dr.Eyal Cohen, Sick Kids)
These children are frequently hospitalized, and 25% experience readmission 30 days after discharge. They are high risk of medical error because of their medical complexity and gaps in care, communication and medical oversight.
Parents are left to step into the formidable role being left to them by the health care system. Overnight, parents of medically fragile, medically complex children become nurses, therapists, medical coordinators, and care coordinators. More than half of these families have a parent stay home and leave their career in order to care for their child. Financial problems, marital stress, sibling issues, poor health, and physical and mental stress overwhelm these families.
So the question is, What can be done?
I remember when we were having our most difficult moments with Kate’s health – and we had no one coordinating her care. We were crying out to anyone who would listen about the need for someone to be “in charge” of Kate’s case. Who could we turn to when things were not going well with Kate on a number of fronts? Her family doctor was simply over his head and had no idea how or where to get the ball rolling to help Kate. Because of the siloed structure of our health care system, our pediatrician did not have access to Kate while she was in hospital, nor could he directly advocate for her with her myriad of specialists. There was a need to create a coordinated interdisciplinary team approach for Kate – and no mechanism for which to do it.
We were fortunate to be ‘in the right place at the right time’ as CHEO was just piloting their Coordination of Complex Care Program in March 2010. Kate was the first child admitted to the program. She continues to be part of the program 3 years on.
Here is part of that story: