Fibromyalgie: “Wir sterben nicht, aber wir leben auch nicht”

INTERVIEW – Der Weg der Patientenversorgung ist noch nicht organisiert. Ein Mitglied gibt Alarm. Selbst wenn, gemäß ihm, Ärzte mobilisiert werden.

Esta frase escalofriante es quizás la más poderosa del informe parlamentario sobre la fibromialgia, publicado hace 7 meses, día a día. “No morimos, por supuesto, pero tampoco vivimos. Con sus 20 propuestas, se habló del documento. Antes de caer de nuevo en el olvido. En este Día Mundial de la Fibromialgia, el 12 de mayo, está claro que las demandas de la Asamblea Nacional siguen siendo una letra muerta.

Sin embargo, la lista de sugerencias no tenía nada que ver con el mago: para conocer mejor la epidemiología de este trastorno, colocar los casos más graves en afecciones a largo plazo (DAL), estructurar el curso de atención … Para pedir algo concreto. Revisión con su autor principal, el diputado de Oise Patrice Carvalho (Frente Izquierdo).

¿Se ha seguido su informe?

Patrice Carvalho   : Von Marisol Touraine kommend, überhaupt nicht. Aber in der Ärzteschaft bewegt sich etwas. Ärzte, die die Krankheit wirklich nicht verstanden haben, beginnen sich zu interessieren. Es wurden Schulungen eingerichtet, die es den Ärzten ermöglichen, besser zu verstehen, wovon wir sprechen. Die Schmerzen sind von Patient zu Patient so unterschiedlich, dass eine gute Diagnose schwierig ist. Ich denke, der Bericht hat die Dinge geändert. Wir sprechen über Fibromyalgie und haben die Krankheit in den Mittelpunkt der Debatte gerückt. Dies hilft, das Denken anzuregen.

Zwei Gesundheitsbehörden wurden beschlagnahmt …

Patrice Carvalho   : Ich freue mich sehr auf den Inserm-Bericht (Nationales Institut für Gesundheit und medizinische Forschung,  Hrsg.  ). Wenn es öffentlich wird, werde ich den neuen Präsidenten der Republik bitten, Fibromyalgie zu einer nationalen Angelegenheit zu machen. Es scheint wichtig, dass sich die Regierung darum kümmert. Marisol Touraine, die hartnäckig darauf bedacht war, ihre Ausgaben nicht zu erhöhen, wollte nicht über die Krankheit sprechen, sondern nur über die Schmerzen.

Was sind die Prioritäten?

Patrice Carvalho   : Sobald der Gesundheitsminister ernannt ist, möchte ich ihn treffen, damit sich die Dinge bewegen. Wir haben Bericht erstattet und Änderungsanträge gebilligt. Aber das alles bleibt ein toter Brief. Fibromyalgie versteht nicht, warum Gesetze nicht erlassen werden. Es ist notwendig, mit den Patienten zu kommunizieren, um getröstet zu werden. Patienten brauchen einen Zustand, wie Menschen mit Diabetes oder Krebs. Wo die Dinge am weitesten fortgeschritten sind, sind die Schmerzzentren. Die Lösung ist da: Der Pflegeweg muss strukturiert sein. Während die Ärzteschaft unwissend bleibt, werden die Dinge nicht funktionieren.

Ihr Bericht hob die hohen Kosten der Fibromyalgie hervor

Patrice Carvalho   : Ja. Die Leute nehmen viel Medizin, ohne zu wissen, ob es angemessen ist. Einige benutzen Medikamente für die Psychiatrie, andere Analgetika. Es wird in Zukunft nicht ohne Wirkung bleiben. Man muss die Dinge anders angehen. Wenn wir keine Heilmittel finden, wird es immer schlimmer. Heute haben wir eine kurzfristige Vision. Aber 2 Millionen Menschen sind betroffen. Und einige Ärzte kennen die Krankheit immer noch nicht, während die Sozialversicherer sich weigern, sie anzuerkennen, und Arbeitsunterbrechungen ablehnen. Es ist ein echter Schmerz.

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