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.
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