The MCH launches ‘concierge’ service for patients with intermediate-complex care needs

Children with intermediate-complex medical care needs are followed by a least three doctors, often more. They also have appointments with other health professionals such as a nutritionist and/or a speech-language specialist and undergo numerous medical tests. It is a lot for families to juggle. Now, imagine having a ‘concierge’ to manage all these appointments. No, it isn’t a fairy tale.

The Montreal Children’s Hospital (MCH) recently launched Phase 1 of the Intermediate-Complexity Coordination and Navigation (I-CCAN) service. In Phase 1, eligible families are appointed to a care coordinator — a non-medical health care worker with experience navigating the MCH’s services. The care coordinator’s role is to centralize access to care and resources and simplify outpatient services scheduling. Basically, the role of the care coordinator is to make life a whole lot easier for families whose sick child has with multiple medical needs.

“Like concierges in a hotel, who coordinate reservations and activities for guests, I-CCAN coordinators arrange appointments according to the family’s schedules, check that ultrasounds. blood tests and other tests are completed, etc. They make sure nothing falls between the cracks,” explains pediatrician Dr. Sara Long-Gagné, a member of the team who developed the service. “What makes care coordinators essential, apart from their great organizational skills, is their empathy and ability to listen to the family’s needs.”

Each week, I-CCAN care coordinator Laura Gagnon spends time speaking with families registered with the service. She gets to know them and identifies their challenges. Laura then uses her extensive knowledge of the hospital to coordinate appointments that fit each family’s schedule.

“Every family is unique and comes to the MCH with different challenges. Perhaps they live 10 hours away or are caring for other children. The important thing is to listen to them and ask how we can make their medical care easier,” explains Laura.

Phase 2 already underway

With the success of Phase 1, the I-CCAN service is already expanding. Phase 2 will roll out in 2022. Nurse practitioner Laurie Cléophat, supported by a team of doctors at the MCH, will act as a “quarterback” to put the family’s needs/priorities first; work with all involved health professionals and coordinate health services to achieve the best outcome for the child. The ultimate goal is to give children with intermediate-complex care needs top-quality care whether it is provided in hospital, the doctor’s office, at school or by a private sector health provider.

A life interrupted

Madeleine was a friendly, cheerful infant until the seizures started. Today, she’s under the care of 11 doctors and health professionals at the Montreal Children’s Hospital.

Madeleine was only five –months old in late 2019 when she had her first seizure. The tremors were mild. Yet, from that day forward, seizures marred her life. Some seizures occurred along one side of her body. Others caused her entire body to convulse. They lasted from a few minutes to an hour. After each, luckily, Madeleine resumed being a cheerful little girl.

That changed in February 2021 when the daycare called to say Madeleine had had a seizure. Thankfully the emergency medication stopped it. Marion, the mother of the child, brought her two-year-old home, and another seizure struck, ending after a few minutes. Then she had a third seizure; which didn’t stop. 

In her local ER, the doctor gave Madeleine a heavy dose of medication to put her in a coma with the aim of halting the seizures. She was then rushed to the Montreal Children’s Hospital. An electroencephalogram showed the toddler's brain was still seizing. Doctors warned mom Madeleine might never wake up from the coma, and if she did, her brain damage would likely be profound.  

Madeleine was diagnosed with Dravet syndrome, a rare drug-resistant epilepsy that occurs in otherwise healthy infants usually during the first year of life. There is no cure.

Before and after

Before the last catastrophic seizure, Madeleine was developing normally; learning to walk, saying a few words. Today, the two-year-old is paraplegic, with little coordination. She can no longer speak and is learning signs to communicate. Food is given via a tube connected to her stomach.

Madeleine has several medical appointments weekly. Eleven different doctors and health professionals treat her ailments and monitor her progress including a pediatrician, a neurologist, a neurology nurse, a dietician, a cardiologist, a nephrologist, a gastroenterologist, a physiotherapist, an occupational therapist, a speech therapist, and a physiologist to monitor her skeletal and muscle formation.

As you can imagine, managing the appointments, the tests, the scans, the prescriptions is an arduous task to manage for Marion and her husband, Alexandre, especially on top of taking care of Madeleine and their son.

The Intermediate-Complexity Coordination and Navigation (I-CCAN) Service at the MCH is the family’s solace.

"Laurie, the I-CCAN nurse, is the best," says Marion. "I email her with all of my questions, concerns, and doubts. She always answers right away. She directs me to different services for help. Plus, if she doesn’t know an answer, she finds it and calls me back. The I-CCAN coordinator, Laura, is a tremendous help. She organizes Madeleine's medical appointments, so we don’t go to the hospital multiple times a week. She also knows it is easier for me when doctor’s appointments and medical tests are in the afternoon. I am so grateful for the entire I-CCAN team. When you have a child with multiple ailments, like Madeleine, it is a relief to have people who know the health care system inside and out, and who know your child's medical history from cover to cover.”

Donations to The Montreal Children's Hospital Foundation fund the I-CCAN service. Without donor support, including from Opération Enfant Soleil, essential programs like I-CCAN would be impossible to realize.