(Adnkronos) - "Pensare di poter applicare dei modelli di cura traslati da altre malattie, sarebbe un errore. E' necessario fare una formazione ad hoc sulla Sla e sulla sua complessità, stando accanto al malato e alla sua famiglia". Così la dottoressa Amelia Conte, neurologa del Centro Clinico NeMo di Roma, Policlinico Gemelli, alla cerimonia per la consegna dei diplomi del corso di formazione per assistenti familiari organizzato in partnership tra la sede reggina di Aisla, Associazione italiana sclerosi laterale amiotrofica, e Regione Calabria.
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00:00What does multidisciplinary care in SLA mean for those who are not in the profession?
00:25SLA is the paradigm of a complex disease, which means that it is a rare disease, prognosis in fausta,
00:34which has a devastating path of disease, which involves a progressive muscular paralysis.
00:40And to be able to face the path of SLA disease, it is necessary that there is a professional,
00:48of the most health professionals, who can take care of the person with SLA and their needs,
00:55both from the point of view of the disease, but also from the point of view of the system of values.
01:02A care of the person with SLA is a multidisciplinary care,
01:07precisely because the disease affects the ability to move, to swallow, to speak, to breathe,
01:13it leads to unusual choices.
01:15And when the SLA diagnosis is made, it is a diagnosis that we are not doing only to the person with SLA,
01:22but to the whole family.
01:23So it is a highly social-family-impact disease.
01:27Thinking about being able to apply care models transferred from other diseases would be a mistake.
01:32So it is necessary to do an ad-hoc training on the disease and its complexity.
01:38To foresee that in the path of disease there are several health professionals
01:44who work both within the hospital structure, but also on the territory,
01:49being close to the patient with SLA and his family.
01:54And in a constant, continuous re-adaptation of what is the cure
02:01and the benefits that can be offered based on the evolution of the disease.
02:06So, even the scientific literature says it,
02:10the best approach to improve the quality of life, to increase survival,
02:16to reduce hospitalization, is a multidisciplinary approach.
02:20Taking care of the person with SLA means putting the person in the center,
02:26taking into account that every day this person loses autonomy,
02:31goes against a serious disability and is called to make unusual choices.
02:36And so what I wanted to convey to the people who participated in the course
02:42is a multidisciplinary care model,
02:45but remembering that the key word must be listening and welcoming.
02:50Listening to the person with SLA, getting in touch with the other
02:58and not proposing a pre-packaged package.
03:03I listen to what I have in front of me,
03:05I try to understand what the other has understood about his path of disease
03:10and I use my skills in the service of the other,
03:18but I put myself in a relationship of listening and welcoming.