Question 16005 — health establishments

Summary

Mr. Stéphane Peu questions the Minister of Solidarity and Health on the decision of the General Directorate of Healthcare Supply (DGOS) to suddenly withdraw the status of constituent center of the reference center for Prader-Willi syndrome at the Hendaye marine hospital, public assistance hospital-hospitals of Paris (AP-HP), specialized in the management of rare diseases and disabilities. He recalls that this decision will have serious consequences both for patients and their families and for the healthcare teams and staff involved. Motivated by the alleged absence of research activity, it demonstrates a lack of understanding of the work of the teams and the remarkable record of activity of this structure. Indeed, the Hendaye hospital works in close collaboration with the Toulouse University Hospital and the University of Bordeaux which allows progress in the understanding of this extremely complex pathology which makes its treatment so complicated, particularly the psychological disorders that accompany it. With a capacity of 36 dedicated beds, the hospital monitors 276 patients suffering from Prader-Willi syndrome, 73 from related syndromes, and is the only recourse in France for the most critical patient situations without solution. In fact, the consequences of this condition, particularly in terms of desocialization, are such that patients and their families often find themselves rejected from other health structures, unsuitable and incapable of dealing with the specificity of the disorders resulting from this pathology. This decision will lead to a reduction in the level of collaboration with medical-social establishments and services (ESMS) which regularly use the service's skills. by Dr. Thuilleaux. It will also weaken the means available to the hospital for appropriate reception and support of patients. It will also impose new burdens on families whose travel costs will only be reimbursed in certain cases. He calls on him to intervene with the DGOS so that this decision is reconsidered taking into account the vital interests of families and research, as requested by the Prader-Willi France Association.

Machine translation from French. The official text remains authoritative.

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• Stéphane Peu · auteur

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