Fibromyalgi: “Vi dør ikke, men vi lever heller ikke”

Intervju – Patientpleiebanen er ennå ikke organisert. Et medlem lyder alarmen. Selv om, ifølge ham, er leger mobilisert.

Denne chilling setningen er kanskje den mektigste av parlamentarisk rapport om fibromyalgi, publisert 7 måneder siden, dag for dag. “Vi dør selvfølgelig ikke, men vi lever heller ikke. Med sine 20 forslag ble dokumentet diskutert. Før du faller tilbake i glemsel. På denne World Fibromyalgia Day, 12. mai, er det klart at kravene fra nasjonalforsamlingen forblir et dødbrev.

Men forslagslisten hadde ingenting å gjøre med magikeren: å bedre forstå epidemiologien av denne lidelsen, plassere de mest alvorlige tilfellene i forhold langsiktig (DAL), strukturere løpet av omsorg … For å bestille noe konkret. Gjennomgå med hovedforfatteren, nestleder for Oise Patrice Carvalho (Venstrefront).

Har rapporten blitt fulgt?

Patrice Carvalho   : Kommer fra Marisol Touraine, ikke i det hele tatt. Men det går i medisinsk yrke. Leger som virkelig ikke forsto sykdommen begynner å bli interessert. Trening er etablert som gjør at leger bedre forstår hva vi snakker om. Smerten er så forskjellig fra en pasient til en annen at det er vanskelig å diagnostisere godt. Jeg tror at rapporten har endret ting. Vi snakker om fibromyalgi, og vi har brakt sykdommen til hjertet av debatten. Dette bidrar til å stimulere til å tenke.

To helsemyndigheter ble beslaglagt …

Patrice Carvalho   : Jeg gleder meg veldig til Inserm-rapporten (Helse- og medisinforskningen,  ed  ). Når det blir offentlig, vil jeg be den nye republikkens president om å gjøre fibromyalgi en nasjonal årsak. Det virker viktig at regjeringen tar vare på det. Marisol Touraine, i sin obstinacy for ikke å øke utgiftene, ville ikke snakke om sykdommen, men bare om smerten.

Hva er prioritetene?

Patrice Carvalho   : Så snart Helsedepartementet er utnevnt, vil jeg møte med ham slik at ting beveger seg. Vi har utarbeidet en rapport, vi godkjente endringer. Men alt dette forblir et dødt brev. Fibromyalgi forstår ikke hvorfor lovene ikke er vedtatt. Det er nødvendig å kommunisere med pasienter, for å være trøstet. Pasienter trenger en tilstand, for eksempel personer med diabetes eller kreft. Hvor ting har utviklet seg, er det mest i smerte sentre. Løsningen er der: veien til omsorg må være strukturert. Mens det medisinske yrket forblir uvitende, vil det ikke fungere.

Rapporten din markerte høye kostnader for fibromyalgi

Patrice Carvalho   : ja. Folk tar mye medisin uten å vite om det er tilstrekkelig. Noen bruker medisiner for psykiatri, andre bruker smertestillende midler. Det vil ikke være uten virkning i fremtiden. Du må nærme ting forskjellig. Hvis vi ikke finner rettsmidler, blir det verre og verre. I dag har vi en kortsiktig visjon. Men 2 millioner mennesker er rammet. Og noen leger kjenner fortsatt ikke sykdommen, mens de av sosial sikkerhet nekter å anerkjenne det og avviser arbeidsstopp. Det er en ekte smerte.

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