The origin of the association dates back to 2015 when your grandmother passed away from devastating cancer. It was a real shock for you, but it also opened your eyes to a reality, that of hospitalized high school and university students.
Yes, I was fifteen when my grandmother Aïda died very quickly. When she was sick, I couldn’t visit her in her room and waited in the hallway. Young people of my age passed through and were not treated in specific services, because nothing existed at the time. A 19 year old hospitalized with cancer can be with someone who is four like someone who is 70, you are either in pediatrics or in adult medicine. For several years, voices have been raised. Those of health professionals, and former patients who say “stop, we must manage to support the care of 15-25 year olds in health!” “.
A first unit has been set up in Saint-Louis, but we would like there to be that everywhere in France. Some questions are specific, such as that of sexuality: we must remain at an adolescent age even between the four walls of a hospital.
At first, I wanted to join an association, but I was told that I was too young or that they didn’t take minors. At that time, we spoke of young people as being of a couch age as today we speak of a Greta Thunberg generation. But on the one hand I wanted to commit and on the other, I couldn’t. So with our second class, we launched an association to organize visits of our class to hospitals. The goal was to get young people into the hospital in another way.
Who are the young people who have joined the association since its creation?
Often the young people of the association are not affected by the disease and they commit themselves to commit themselves. It’s new in the health sector because, most of the time, it was people who had lived through heavy journeys, or health professionals. We saw the impact: it was not 50 young people, but thousands who got involved. Half of these young people after three years tell us that they want to get involved in the health sector later, either as a professional or to launch a health-related startup.
How did you come to start this training?
A year ago, we wondered where we were at the association. And we have seen that young patients are in a context where they are in the middle of the ford: they are told to turn the page and on the other side, they have the will to transform something experienced into something concrete for others, for the health system and to make things better. The first thing is to ask them how we can improve things. This is one of the pillars of the emergence of this training. Which, moreover, was born in a context of health democracy where since the 2000s patients have been encouraged to speak up for their rights.
But in those who speak out about what they have experienced to advance their fights, there are few young people and every time we decide on the health of young people today, there is no young people around the table. We wanted to set up training with former patients, who have expertise. We want them to emerge, and accompany them to put words to their experiences and engage with a public body, an association or even a hospital!
The idea is that we are a gateway to something else and that they can say to themselves “I am continuing my life as it was” or “I am changing direction to be a nurse or launch my health box” or even “I’m going to change jobs! “. It’s a technical training, not a discussion group.
We talk a lot about the bald children we see on TV, but a 15-year-old is still a 15-year-old. And for the first time, it is from them that we are going to learn, without being in something descending. Instead, we want to trigger something like “you are the leaders who will emerge and improve the health system”. The disease is something infantilizing and it leads to vulnerability. We give them the keys so that they can be tomorrow’s healthcare leaders.
