The Community of Madrid is already treating the first patients in the Specialized Day Care Center for Amyotrophic Lateral Sclerosis (ALS) of the public Hospital Enfermera Isabel Zendal. After functioning as one of the pillars of containment against covid, this public hospital today debuts its new facet within the Madrid health structure. Now, A team of 40 people will work on it, among them eight auxiliary technicians, six nursing professionals, five physiotherapists, five orderlies, three speech therapists, as well as up to three occupational therapists, two palliative care experts, a pulmonologist, an internist, a rehabilitator and a clinical psychologist. This new Madrid public health infrastructure, the first of its kind in all of Spain, It will cover the daily needs of up to 60 patients a day, as well as their caregivers, while offering specialized outpatient services.
The adaptation works, which began at the beginning of this year, have allowed it to be launched on schedule, with an investment by the regional government of 1.2 million euros. Users of this public resource are referred from the ALS Units of public hospitals. October 12, Gregorio Marañón, San Carlos and La Paz Clinic of the capital, Infanta Elena de Valdemoro and King Juan Carlos of Móstoles.
Once at Zendal, they receive medical support, as well as nursing care, rehabilitation, physiotherapy, speech therapy, occupational therapy and psychological assistance, aimed at improving their quality of life and autonomy in a safe environment and a friendly space. They also have assisted dining service (with capacity for a total of 20 patients), gym and a technical aid bank with the possibility of loaning assistive devices.
The Specialized Center of Zendal Day Care for ALS It will also provide the necessary training to main caregivers, family members and/or professionals in the use of care elements and management of clinical supports that compensate for loss of function, such as respirators, gastrostomies, aspiration of secretions, as well as cough assistants.
The 1,400 square meters of facilities are designed to provide maximum care and comfort to their users, with the aim of maintaining the best possible level of personal autonomy and facilitating family and work balance for caregivers. The Community of Madrid assures that it has at all times had the advice of ALS experts, patients, family members and caregivers. In this sense, days before its launch, a meeting took place with a representation of the latter, as well as with the Spanish Association of Amyotrophic Lateral Sclerosis (Adela), to learn first-hand about their needs and verify the adequate performance of this infrastructure.
Adela integrates and welcomes other smaller organizations, such as “Vuela contra la ALS”, who organized their charity fundraising event last Saturday. This degenerative disease has experienced an almost unprecedented growth in media visibility. From the great viral phenomenon of the «Ice bucket challenge», Many people began to become aware of the consequences of this pathology and to learn more information about it. In our country, the case of soccer coach Juan Carlos Unzué has once again put these three letters in the frenetic news coverage. Furthermore, Unzué has become an icon of improvement, not giving up his job as an official LaLiga commentator and without ceasing to enjoy the passion that has fueled his life. However, these associations assure that it is still not enough: “We are in a delicate moment, in which ALS has ceased to be a rare disease, but it has also abandoned that umbrella to occupy a no-man's land.” Everyone also agrees that the focus must now be on funding research, to discover new treatments that will slow down the rapid evolution that accompanies this degenerative disease.
At Zendal, the adaptation of spaces has been carried out from a “humanizing” approach, providing beneficiaries with a safe, comfortable and adapted environment, taking into account that the perception of an optimal environment provides calming and even therapeutic effects,” they say from the Regional government. The action has incorporated aspects such as acoustic and sensory comfort (lighting, privacy or views with natural elements), with large open areas, as well as fully accessible.
This installation of Madrid public health service of Zendal will join the ELA NETWORKwhich includes six hospitals in the region (12 de Octubre, Gregorio Marañón, Clínico San Carlos, La Paz, Infanta Elena de Valdemoro and Rey Juan Carlos de Móstoles), as well as the future Puerta Hierro Residential Health Center, which It will become the first in the world of these characteristics.