Adnkronos (Adnkronos) – "Unfortunately, the number of ALS cases is constantly increasing, both due to increased attention during the diagnosis phase and to easier access in some cases to outpatient care." This is how Francesco Lettieri, director of the Central-Southern Area of the Nemo Clinical Centers, explained yesterday in Paestum, on the occasion of the 19th National ALS Day, the importance of a specialized care network for people with neuromuscular diseases.
"The demand from people with neuromuscular diseases is ever-increasing. What we're asking of institutions is not only to allow us to expand our reach across the country, but also to provide support that can formally recognize these types of diseases," Lettieri emphasized.
The problem, he highlighted, is also the gap between the concrete needs of patients and the recognition expected by the healthcare system.
"Then the practice of illness clashes with the form of healthcare recognition, which doesn't always correspond. Therefore, the effort of healthcare workers is doubled in some cases and is based solely on the goodwill and sense of responsibility of healthcare workers." Lettieri then emphasized the need to strengthen the presence of specialized centers.
"We've become small and few in number, in the sense that in Italy there are only eight," he explained, highlighting how increasing demand requires a more widespread model across the country.
Family requests are also central. "What families ask for is to be protected in the hospital," Lettieri said, explaining that "specialized centers offer multidisciplinary and much more attentive care." The goal, he added, is to ensure a presence of professionals adequate to the needs of people with neuromuscular conditions. "What they would like is local care. Unfortunately, not all areas are equipped," he continued. This difficulty is linked both to the number of patients and the need for specific skills. "Specific knowledge is needed to care for these people." The transition from hospital to home thus remains one of the most delicate moments. "Due to the bureaucratic burden that characterizes us, activating home care is a first hurdle that may seem trivial because it's bureaucratic, but it is precisely the first complicated step in going from the hospital to home," Lettieri concluded.
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