Depuis la loi HPST du 21 juillet 2009, l’éducation thérapeutique du patient, souvent abrégée en ETP, fait dorénavant partie en France du parcours de soins des patients atteints de toute maladie chronique. Le modèle de santé prôné par l’OMS change, il devient partenarial, l’empowerment du patient devient central. Nous exposons ici la construction d’un programme concernant la schizophrénie, initiée en 2012 à l’EPSM d’Étampes, à 50km au sud de Paris, donc éloigné des centres universitaires. Cette construction est totalement encadrée en France par les guides méthodologiques et les recommandations de la HAS, contrairement à ce que en psychiatrie désigne le terme de psychoéducation. C’est un parcours parfois difficile, toujours enrichissant, pour les professionnels impliqués, de construire un programme d’ETP et d’en obtenir l’autorisation par l’ARS. L’approche multi-professionnelle alliée à la nécessité d’un changement de posture peut être déroutante. Pour la construction des outils pédagogiques, ce sont souvent les soignants et les pharmaciens, plus que les médecins, qui font preuve de créativité. L’enjeu est d’importance, car l’ETP, avec la remédiation cognitive, sera partie prenante des centres de réhabilitation psychosociale qui, grâce à une prise en charge précoce, devront diminuer l’impact fonctionnel des pathologies psychiatriques chroniques.

In 1997, an expert group from WHO Europe made a report and international recommendations for training and practice in therapeutic education of the patient. The French version of the text was published the following year. In France, it is the law of 21 July 2009, called “Patient Health Territory Hospital”, which formalizes this practice and inscribes it in the course of care of patients suffering from chronic diseases. The TPE is regulated by official texts and must respect the recommendations of the High health authority. That is the French peculiarity. Thus, any TPE program must be authorized by the Regional Health Agency (ARS) on which the establishment is dependent. Practices that would not be authorized by these ARS are not entitled to be called TPE, even if they meet all of the criteria. Although included in the law in 2009, this practice of TPE remains long unknown in France to most hospital practitioners. Thus, concerning our psychiatric hospital, located 50km south of Paris, it is a certification visit that requires us in 2011 to register the TPE in our program of establishment. A small group of professionals of varied training (psychiatrist, addictologist, general practitioner, pharmacist, psychologist, nurse, social worker, educator, legal agent, dietician, caregiver) is working on this task in the course of the year 2012. We decide to build a program for people suffering from schizophrenia. We form a partnership with an association of Patient families, the UNAFAM. We choose to do only group support, more effective in the pathology we have retained. When the practitioners involved present their project in front of their peers, they have not yet received the mandatory 40hours training required by the HAS for any therapeutic education workshop facilitator. This may explain that our project is being received with so little enthusiasm. We are faced with many reproaches. However, we are pursuing the construction of the workshops, which will be disturbed by the compulsory training of 40hours that only be in 2013. We realize that the support of our hierarchy is essentially moral, since no dedicated time will be assigned to this program, which we have to carry out with the same means. We start our first workshops in September 2014, with ARS funding as an experimental project. Our program includes the following eight workshops: “Living with your illness”, “understanding and managing your treatment”, “social skills”, “lifestyle”, “addicts”, “Libido”, “do”, “do with”, “do together”, “caregivers”. The nurse coordinator carries out the educational diagnosis and the participant decides which workshops he wants to participate in. This nurse coordinator participates in all the workshops in addition to the specific animators. The workshops follow each other and two programs are closed over the year. There is no mandatory order and participants can integrate a program at any time. Often, they ask to participate in other workshops than those initially chosen after having experienced the group. The approach of the workshop animators is based on the motivational approach. After four years of operation, the effectiveness of this program is being evaluated. The feedback from participants is in any case very favorable, and they all underline their pleasure in having interlocutors who are no longer in the usual caregiving posture. But we also measure the fragility of this program, depending on a very small number of people.