Blindfolded by a thick scarf, Marie groped. It must follow the oral indications of Guillaume, a student with 80% disability, to cross without hurting obstacles that separate it from a chair at the other end of the room. "Go forward three steps and then you can touch a table with your right hand"says Guillaume.
About twenty very attentive people attend the stage. "The path that Marie goes through is a metaphor for the patient's care journey"explains Florence Puch, Professor of Therapeutic Patient Education (FTE). The exercise is not in vain: it must show the need to take one's time, to repeat the instructions to allow the other, "The blind patient", to better integrate the information given.
Valorize and recognize the knowledge of patients
Founded in 2009 by Professor Catherine Tourette-Turgis, a pioneer in the care of patients in the field of HIV / AIDS, the Paris University of Patients is the first recognized university degree-granting organization in the world to introduce patients living with or several chronic diseases, in his trainings to the therapeutic education of the patient.
Catherine Tourette-Turgis, researcher committed to the most vulnerable
The idea is simple: to value and recognize the knowledge of the patients, often unable to work, and to propose to them to intervene after a university education alongside health professionals as "expert patients".
"Through the knowledge of his pathology, his treatment, the self-care gestures he practices every day, the patient is a producer of knowledge drawn from the experience, which can be shared with carers and other patients less experiencedexplains Tourette-Turgis. At the University of Patients, we create a framework conducive to the partnership between health professionals and patients. Everyone is free to bring to the other "his" knowledge and experience. "
"Illness excludes you from society"
Housed in the prestigious Pierre-and-Marie-Curie Faculty of Medicine in Paris (Sorbonne University since 2018), the University of Patients offers three university degrees requiring an availability of two days per month: a training in therapeutic education, a oncology course and diploma in health democracy.
Study despite your disability
After a first year, students who wish to continue their training can enroll in a master's degree in health, pathway "therapeutic patient education", or participate in a master class dedicated to advocacy work or a patient mission in a pathology specific. Each student chooses his career according to his professional project. Some plan to set up associative projects and others to be integrated as patient partners in specialized care units.
The patients who join the University of the patients are for the most part beneficiaries of an invalidity pension or perceive the minimum social. Their situation sometimes generates precariousness and social isolation. "The disease excludes you from society, when you have a clinical vulnerability, it is accompanied by a social vulnerability, says Léa, a cancer patient and a graduate of the University of Patients in 2017. For the first time since the beginning of my treatment ten years ago, I could again have projects, be helped and be accepted with my illness. "
Here, no question of getting lost in the anonymity of an amphitheater and even less to mechanically transcribe the content of slides projected on a giant screen, as in a classic course of medicine. At the request of Professor Florence Puch, students in therapeutic education – half of whom are chronically ill – have placed their tables in an arc, called by their first names and can ask questions at any time.
In the small room, each student takes turns to introduce himself and reveal in a few words the project he wants to achieve as part of his university training. Marie was diagnosed HIV positive in 1985, this year she wants to build competence to improve the care of patients; Catherine has had breast cancer, she hopes soon to set up support workshops for patients in Corsica, where the care is still too weak; Nicolas is waiting for a kidney transplant for ten years, he wants to use this training to evolve the relationship between practitioner and patient; Celine was anorexic, bulimic, she just created a website for the sick to help families and patients in their daily lives …
"Each course is singular, but there are many similar things in all of our experiences as patients.", says Beatrice, in remission of her second breast cancer. She graduated from the University of Cancer Care in 2018. "Whatever our pathology, we all lack information on the side effects, and accompanying on how to do with his family, how we talk about the disease with his children … Why I have fatigue at this time -the ? And what does that mean? The list is long… "she explains.
"The doctor must always think of the patient as a whole"
At the moment the patient receives his diagnosis, everything accelerates. He does not always have the time to integrate the information and even less to accept the path of care chosen by the health professional. "Especially since the doctor must always think of the patient as a whole. You have to get the patient where he wants to go and not where he should – in my opinion, the health professional – bring him, explains Florence Puch. This is not a case, a patient, but a unique person with its complexity. "
The training provided at the University of Patients allows people to revisit the history of their illnesses and to confront the problems faced by health professionals, including lack of time and the obligation of result. "In addition to legitimizing our patient experience, it is an important change of posture, says Pascale, who completed the DU (university degree) in cancer. It allows us to put the disease at a distance and digest what happens to us. We are all sick, but there, for once, I do not speak about me anymore. I understand the position of the medical faculty and I can finally focus on helping other patients perhaps even more vulnerable. "
University of patients in figures
► Three university degrees are offered by this course taught within the Sorbonne University Faculty of Medicine: therapeutic patient education, health democracy and patient support in oncology.
►82 sick students and caregivers were enrolled in the fall of 2019.
► 180 patients have graduated since the beginning of this initiative, in 2009.
► Ten pathologies are represented (cancer, AIDS, diabetes, etc.).
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