“Amyotrophic lateral sclerosis (First) is a disease that must be treated by several specialists at once and is currently lacking in most ALS departments in Spain. ” This message is provided by Juan Francisco VazquezNeurologist Lafite Hospital and the report of the Spanish Neurological Society (special needs) hopes to prepare a report in 2024 that will fully reflect the reality of many centers and patients in Spain.
Experts explain that over the years Europe A center specializing in ALS has been integrated, called Nemohas not yet been implemented in Spain: “These facilities Completely independent of the hospital They have their own building. All specialists are there working side by side and patients do not have to wander around the hospital, going from one service center to another.a date and a only medical act enough for patients to accept all necessary attention“. For neurologists, this approach to treating ALS patients “is not implemented in most ALS units included in the document ‘Amyotrophic Lateral Sclerosis Health Resource Map’ published by the Ministry of Health. “
The reality that Spain currently has in its medical institutions is that, in Vázquez’s words, “ALS patients receive care go through different majors.The expert is structurally dependent on Different levels of service supervisors, so any decisions or changes must go through their respective superiors. Getting seven service chiefs, each with their own interests, to agree is complicated. “
“ALS patients receive care from different specialties”
The elimination of this hierarchy, as is already implemented in most European countries when treating ALS patients, is a goal that the neurologist hopes to reflect in the report, which he will carry out together with different members of the SEN: “In one unit of ALS middle It is impossible for a pulmonologist to dedicate a day to In order to see patients, all professionals must devote themselves to the task. ” To achieve this goal, experts believe that the ALS department “in addition to having its own independence, must also not be hierarchically dependent on different services.”
Changes in mindset related to medicine and ALS patients
When it comes to changing this dynamic in ALS specialist units across Spain, neurologists believe it is necessary “Promote a change in mindset Reference Patient-Centered Medicine. The patient should not revolve around the institution, but the institution should revolve around the patient. ” For experts, how medicine is practiced “has a lot to do with what Patients adapt to doctors and hospitals, but for rare and serious diseases, spaces must be created specifically for patients. “
“In the Valencian community we are working hard to create physical spaces for people with ALS”
Not long ago, the Council of Ministers approved Invest 50 million euros To improve healthcare for ALS patients, experts hope a portion of the funding will be dedicated to “creating spaces to provide True multidisciplinary care ALS patients. In the Valencian community, efforts are being made to create these physical spaces because now it is not possible to have a single appointment model due to the lack of space to provide this care to patients. ”
This is NeMo, the ALS department without a medical service level
