Walking alongside: Complex Care Program celebrates 10 years of caring for SickKids’ most medically fragile patients

TORONTO – “We’re here to walk alongside you.” Stephanie Pasher remembers these encouraging words from one of her first meetings with the Complex Care Program at The Hospital for Sick Children (SickKids) six years ago.

Pasher and her husband Neil are the proud parents of three girls; eight-year-old twins Avery and Kinleigh, and Sloane, who is six years old. After a healthy pregnancy, Sloane was born with left microphthalmia, a developmental disorder of the eye in which one eye is extremely small and has anatomic malformations. Genetic testing soon revealed that this was one of many challenges Sloane would face, being diagnosed at one month old with a rare neurologic condition that affects just 5,000 girls worldwide. Aicardi syndrome is a rare genetic malformation syndrome characterized by the partial or complete absence of the corpus callosum, the part of the brain that connects the left and right hemispheres; as well as the presence of retinal abnormalities and seizures in the form of infantile spasms.

As a child with multiple severe medical challenges, Sloane is part of a group of patients known as medically complex. Children with medical complexity represent only one per cent of kids in Canada, but the cost of their medical care is enormous – more than a third of the paediatric health-care budget. Over the past 10 years the Complex Care Program at SickKids has been caring for hundreds of children and families as they navigate not just their health care needs but all aspects of life with medical complexity.

During her first few years of life Sloane spent weeks at a time in hospital and was in and out of the intensive care at SickKids almost monthly. In addition to coping with seizures and minimal vision, she takes more than 25 medications every day, relies on a feeding tube in her belly for nutrition, has reflux and requires regular suction to ensure her airway is clear. She has severe scoliosis, uses a wheelchair and is non-verbal. The slightest cold could put her at risk, often leading to hospitalization.

“The main challenge with children with medical complexity is that they rely on technology for life-support, feeding and breathing, as well as having multiple care specialties involved and recurrent hospital needs, including prolonged stays. These kids do not just visit one clinic or one doctor, and as a result their care can easily become fragmented and uncoordinated,” says Dr. Julia Orkin, Staff Paediatrician and Medical Director of the Complex Care Program at SickKids.

“Our program was formed to provide a coordinated approach to care. We’re breaking down barriers and acting as a bridge between all the providers so the child is looked at as a whole rather than in categories,” she adds.

In effort to provide child and family-centred care, the Complex Care program supports families by empowering them to be advocates for their kids in an ever-changing clinical environment. The Complex Care team at SickKids becomes the central contact for all health concerns. For example, if a complex care patient comes to SickKids emergency department, they can call in advance and someone from the team will meet them upon arrival. “Our patients come to the hospital a lot, so ensuring that there is a familiar face who knows their case is huge for these families,” says Orkin.

The multidisciplinary team is not only building those relationships at SickKids, but in the community as well. They work closely with satellite clinics in North York, Mississauga, Barrie, Orillia and Peterborough in efforts to provide high quality care closer to home, recognizing that families with chronic medical issues experience challenges beyond the immediate health concerns such as missed work, missed school and child care for siblings. The Complex Care nurse practitioner acts as the liaison between all the care providers inside and outside of SickKids, maintaining continuity of care and making communication more effective and efficient. Currently, the program cares for approximately 260 patients, and the goal is for this number to increase to 500 within the next five years.

“It takes a team to care for these patients, and we’re trying to empower each team member –whether they are here at SickKids, in the community or at school – to work together in the best interests of the child, rather than trying to figure things out in isolation,” says Orkin. “We have evidence that this translates into better care for the patients and a better experience for the patient, the family and all the care providers.”

For Sloane that means coordinating with subspecialties at SickKids like genetics, neurology, orthopaedics and pharmacy, as well as with her community paediatrician and her local hospital in Oshawa. “For many years, we would rush down to SickKids rather than go to our closest hospital because we were so familiar with, and confident in, the SickKids team. Since Sloane’s health is so fragile, it was exhausting dealing with new people and giving them her complex medical history in a crisis situation. After countless races down the DVP, we learned that this wasn’t sustainable. The SickKids team helped to build the relationship with our local hospital so now, we feel confident in the care Sloane will receive closer to home,” says Pasher.

“It’s had a huge impact on our family life because when Sloane is hospitalized we can spend more time together. Our other daughters can come visit and it’s made things a lot easier for us all.”

Because many Complex Care families are in touch with the medical system so frequently, a major challenge is explaining and re-explaining their child’s complex medical issues every time they seek medical attention. To reduce this burden for families, the Complex Care team has developed a Care Plan document for each patient outlining their diagnoses, medications and all the details of their care, so this resource is readily available wherever and whenever it is needed.  “We’re always reviewing the Care Plan, reevaluating what’s working and what isn’t, and having very honest discussions about what’s best for Sloane and our family as she grows up,” says Pasher.

The Pasher family started working with the Complex Care team when Sloane was just a baby, and they have come a long way since then. “The relationship we have formed with the team is priceless. They are on this journey with us and understand that it is not just about providing excellent medical care to Sloane, but supporting us individually and as a family. It’s not uncommon for our doctor to ask ‘how are the twins doing?’, ‘how is your marriage?’, or ‘have you been getting rest too?’ They recognize the challenges of raising a family, caring for your children and for yourself, and they’re supporting all of us through it,” says Pasher. 

Learn more about the Complex Care Program at SickKids.

This program is an example of how SickKids is contributing to making Ontario Healthier, Wealthier and Smarter.