This text is part of the special section Philanthropy
The Montreal Children’s Hospital’s Intermediate Complexity Coordination and Navigation Service (CONCI) helps families of children with complex medical needs manage their situation.
When she was born, little Madeleine was in good health. But at five months, she started having seizures. A year later, she was diagnosed with Dravet syndrome, a rare form of incurable and drug-resistant epilepsy. Today, she is cared for by the Intermediate Complexity Coordination and Navigation Service (CONCI) at the Montreal Children’s Hospital.
Madeleine is now two years and nine months old. The after-effects of his illness and a serious crisis that occurred in 2021 affect his motor and intellectual abilities. She needs to see more than 15 medical professionals. For his family, it is not easy to navigate through the multiple appointments, to master the medical jargon and to make the best decisions for their daily well-being.
Fortunately for them, they can now count on Laurie Cléophat, nurse practitioner specializing in pediatric care at CONCI, a Children’s program that supports the families of these children who, like Madeleine, are struggling with very complex medical needs.
“Madeleine’s situation is becoming ever more complex,” explains her mother, Marion. New specialists are constantly being added. The CONCI supports us by grouping appointments to better fit them into our schedule, and Laurie Cléophat helps us better understand our daughter’s needs. She has a global vision of her case. When we have a question, we can call her, and if she doesn’t already know the answer, she does some research. It saves us a lot of steps, and it’s really good to have additional support. »
“As a parent, it’s a lot of pressure to manage the information related to Madeleine’s case,” adds Alexandre, Madeleine’s father. Laurie makes sure that all the information is transmitted from one specialist to another, and she popularizes it for us. This helps us to express ourselves when we talk to different doctors. »
The genesis of the CONCI
At The Children’s, up to 60% of young patients present with medical complexities.
“We founded the CONCI to support parents who, in addition to the care they have to provide for their child, must in some way become experts on their disease to ensure communication between specialists, which is difficult, explains the DD Sarah Long-Gagné, complex care pediatrician at The Children’s. They are directed through a complex health system. »
Since 2015, the DD Long-Gagné wanted to start a service like CONCI. It was in the midst of a pandemic that the project finally obtained funding. Initially a pilot project, the service has been a great success with families. Thanks to the financial support of the Montreal Children’s Hospital Foundation and Opération Enfant Soleil, it is in full expansion.
For the moment, the CONCI works with 157 families, and the objective is to be able to serve more than 500 patients. To have access to its services, a child must be followed on a long-term and continuous basis by at least three health professionals at The Children’s.
Laurie Cléophat joined CONCI as a nurse practitioner in June 2021. She now manages the cases of 17 young patients whose condition is very complex. A second nurse will soon come to lend him a hand.
“Madeleine’s case is typical of the patients I deal with,” she says. When the parents have a problem with the child at home, they call me to ask my opinion, and I can do a first triage to refer them, if necessary, to the right doctor. »
Each week, CONCI receives five to ten new requests, and about thirty families are currently on the waiting list to access its services.
“For these families, the sudden illness of their child is a traumatic experience, argues Laurie Cléophat. Their life is turned upside down. Suddenly, dozens of caregivers are involved in their child’s life, and they have to go to several appointments a week while they also have to work and take care of their other children. We must be attentive to their needs, their concerns and their objectives. From there, we try to reconcile that with the objectives of the care team. It is important to include the parents’ perspective in the long-term care plan. »