Five years since the creation of MUSCO’s Advisory Pole

the voice of families active in the Initiative

What do Annie Pinet, Angélique Bélec, Caroline Marie Fidalgo, Daniel Bélec, Isabelle Courchesne and Stéphanie Renaud-Beaudin have in common? They are all parents of children or children living with a neuro-musculoskeletal condition, and are currently members of MUSCO’s Advisory Pole.

Three times a year, this entity at the heart of the Initiative’s governance allows patients and families to be concretely involved in the reflections and actions carried out within the Initiative as a whole, and to enrich discussions by sharing their varied perspective. After all, parents remain “the best professionals for their children”, to use Caroline Marie’s expression, and being able to benefit from their advice and experiential knowledge is a valuable advantage for all MUSCO collaborators.

Why participate in the Advisory Pole?

All of us, whether we’re the mother or father of a child with special needs, or a patient ourselves, often go through moments of doubt and helplessness. And yet we keep moving forward. It’s to move forward collectively and try to sweeten the lives of our children and those of the parents we rub shoulders with in the hospital corridors or on social networks that we have each decided to participate in a committee such as MUSCO’s Advisory Pole.

quote from the word of the Advisory Pole in MUSCO’s 2020-2021 annual activity report.

How are members recruited?

Members of the Advisory Pole are recruited with the help of the Inter-establishment Navigators (IEN), who consult with the teams in the field. As part of this process, and as far as possible, the aim is to achieve a certain representativeness in terms of diagnoses, career paths, socio-professional categories and the involvement of mothers, fathers and/or patients. True to their role as “wise people” with consultative and reflective powers, the members recruited ensure that the involvement of children and families is central to MUSCO’s actions and innovations, and that there are appropriate responses to identified needs.

What is the Advisory Board’s mandate?

  • Provide advice, insights and recommendations with regard to the Initiative’s current and upcoming projects;
  • Ensure that all major and joint projects carried out within the Initiative are aligned with key issues;
  • Advise on the Initiative’s strategic directions.

Since the creation of the Advisory Pole in 2020, no fewer than 11 meetings have been organized, with an average participation rate of almost 73%! When you consider how busy the schedules of families of children with complex needs can be, and how heavy their mental workload can be, this is a real testament to their commitment and willingness to get involved.

Discussions within the Advisory Pole have helped to guide a number of projects, notably that of setting up an Educational Technology (by helping to identify the different stages of the trajectory on which the project should focus), the Relay project (by opening up reflection on the hospital relay) and the new role of Inter-establishment Navigator (by directing the IENs on issues of importance to families).

Among the members who have offered their expertise over the years, the majority of whom still sit on the Advisory Pole, are : 

  • Angélique Bélec, patient
  • Annie Pinet, mother of Mia
  • Ariane Tremblay, mother of Marion and Romain
  • Caroline Marie Fidalgo, mother of Alex Olivier
  • Christina Cando, Nayla’s mom
  • Daniel Bélec, father of Angélique
  • Diane Chênevert, Philippe’s mom 
  • Isabelle Courchesne, Angélique’s mom
  • Linda Moreau, Nia’s mom
  • Stéphanie Renaud Beaudin, Nathan’s mom

In addition, some members are involved from a more “operational” point of view, having sat or sitting on working committees for various projects, mainly collaborative projects. This enables them to play an integral part in the ideation and reflection process, at various stages of project development. They are also able to share their experience with other collaborators in the healthcare network. 

And quite frankly, the MUSCO team couldn’t imagine these working committees without their invaluable input! Thank you to each and every one of them for their time and trust!

Photo order: Caroline Marie Fidalgo, Stéphanie Renaud Beaudin, Daniel Bélec, Isabelle Courchesne, Angélique Bélec and Annie Pinet