Committed Patient Experts from the Advisory Pole
who testify about their new experience on the MUSCO Executive Committee
There are many reasons why Annie Pinet and Daniel Bélec joined the MUSCO Initiative as Patient Experts. First and foremost, they wanted to get involved and help, but they also wished to share their experience: “My daughter Angélique Bélec has regularly attended the four children’s hospitals. […] It’s always touching when it comes to sick children and if my experience can help, then it’s a win-win for me,” explains Daniel.
He and his wife Isabelle felt the stress and fatigue that the many questions about their daughter’s condition caused: “We had to do so much research on our own that it was sometimes both exhausting and stressful. As parents, we want the best for our children.” This experience is similar to that of Annie’s, who at times also felt insecure in her journey through the hospitals. Dedicated first and foremost to maintaining her daughter’s health status and the well-being of her family, “putting her shoulder to the wheel” has been a way for her to ensure that things get better.
“The initiative gives a voice to parents who are, in effect, the ONLY ones who actually go through all the stages of a lifetime in the healthcare system. It’s not trivial to be able to share my experience and the experience of those around me,” she explains.
Annie and Daniel recently seized the opportunity to join the Initiative’s Executive Committee, a way for them to be better informed and to feel concretely involved in finding solutions to various issues. This experience also inspires admiration for the professionals who, despite their busy schedules, take the time to get involved in MUSCO committees. “They are there for us […] and in turn share their experience and knowledge of the field which allows me to have a different perspective as a parent. What I appreciate most is the consideration given to the input of the Patient Experts, I really feel the intention to listen to us,” adds Annie.
Daniel is also well aware of the energy that everyone gives to ensure that the Initiative moves forward and progresses: “I am convinced that this will make MUSCO known and that other parents will be able to find out more easily about all the services available to them.” He and his wife hope that MUSCO will be able to provide concrete support to families in a simple, quick and effective way, and allow parents to devote themselves fully to their child’s health.
If Annie’s involvement with MUSCO is a way to give back to the community, she also hopes that the evolution of the procedures and operations in place, driven by the collaboration, will make it possible to sustain the improvement of the quality of the care experience for patients of all kinds: “I would very much like the recommendations made at the end of the project to be given the same consideration as that given to me as a parent of a child who will grow up through and thanks to our hospital services. I would like MUSCO’s orientations to be heard by our politicians […] and that these decision-makers see the interest in expanding the solutions […].”
Time will tell if her wish will be granted.