“amyotrophic lateral sclerosis (the A) is a disease that should be treated by several specialists in a single task and is currently lacking in most ALS units in Spain.” This message is launched by Juan Francisco VazquezNeurologist Hospital La Fe And that from the Spanish Society of Neurology (Sen) intends to produce a report in 2024 to adequately reflect the reality of the many centers and patients in Spain.
Experts say that over the years Europe A type of centers specializing in ALS have been consolidated, known as Nemowhich has not been implemented in Spanish territory to date: “These facilities are completely independent from hospital And they have their own buildings. There all the specialists work together and the patient does not have to wander around the hospital, from one service to another. a single appointment and a medical act only enough to get the patient all necessary attention, For neurologists, this way of treating ALS patients “is not implemented in most of the ALS units included in the document ‘Map of health resources for amyotrophic lateral sclerosis’ published by the Ministry of Health.”
The reality that Spain is experiencing with the units currently in place is, in the words of Vazquez, “Patients with ALS receive care By various specifications, This specialist structurally depends on a hierarchically distinct head of service, so any decision or change will have to go through their respective superiors. It is very complicated to get the seven service chiefs to agree with their respective interests.
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“ALS patients receive care from a variety of specialties”
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Eliminating this hierarchy, as most European countries have already implemented when treating patients with ALS, is the objective that the neurologist wants to include in the report that he will carry out with the different members of the SEN: ” In a unit of ALS” There cannot be a pulmonologist who devotes a day To see their patients, all professionals must dedicate themselves completely to this task. To achieve this, experts consider it essential that the ALS unit “not be hierarchically dependent on different services, in addition to its independence.”
Changes in mindset related to therapy and ALS patients
When it comes to changing this dynamic within Spain with regard to units specializing in ALS, neurologists consider it essential “Promote change in mindset In the context of patient-centred medicine. The patient should not revolve around the institution, the institution itself revolves around the patient.” For the expert, the way the therapy is implemented “has a lot to do with what.” The patient adapts to the doctors and the hospitalBut in rare and serious diseases, a space specially adapted for the patient must be created.
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“In the Valencian Community, work is being done to create physical spaces for ALS patients”
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After the recent approval by the Council of Ministers 50 million euro investment To improve health care for people with ALS, the expert hopes that a portion of this amount is dedicated to “creating space to provide” authentic multidisciplinary care For patients with ALS. In the Valencian Community, work is being done to create these physical spaces, since it is no longer possible to work with a single appointment model due to the fact that there is no place to provide this care to patients.”
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