Between 3,600 and 4,000 patients that it is estimated that in Spain they suffer Amyotrophic lateral sclerosis (ELA) They ask the government for the “immediate” application of the law that recognizes their rights but that, today, five months after its approval in Congress, it still does not count on an assigned budget that is destined to help cover the high expenses that take care of people who suffer from this disease cause. After diagnosis, life expectancy goes from three to five years. The new standard grants a period of 12 months To apply the measures you contemplate, a time that for many patients can “assume the difference between a dignified life For them and their relatives or its abandonment by the State“
This is how the V EL OBSERVATORY, A report prepared by the Francisco Luzón Foundation and presented this Thursday at an act that has taken place at the headquarters of the Once Foundation in Madrid, in the presence of the Minister of Health, Mónica García. The “immediate application of the law is crucial, since more than 50% of people with ELA die by their own decision By feeling a family or economic burden by not having the necessary resources for your attention, “says work in its latest section, which includes the challenges and recommendations that the country’s main entity in the fight against this disease considers priority for land the law to reality “within the shortest period”.
Work remembers that Between 184 and 230 million euros per year That the Francisco Luzón Foundation estimates that they are needed to guarantee the indispensable vital services for the people affected by the ELA and their family caregivers is an amount that the autonomous communities can assume without waiting for the arrival of the budget funds. “CCAA have enough mechanisms To launch the forecasts of the law regardless of the existence of a specific item in the next General State Budgets, “says the document, within the shortest period
Likewise, ELA specialists demand territorial cohesion in the execution of the norm, “political will” and “great coordination” between the State and autonomies to homogenize all benefits and services to patients and that these do not depend on the patient’s postal code. The report demand “equity” by showing that “currently, Only ten autonomous communities have the protocols for the transfer of eye readers“, which considers an” unacceptable barrier. “
In this sense, the Minister of Health has recognized during the presentation of the results that “we know that legislative times are not always accompanied by the times of patients and their families, but that gap between the urgency of patients and administrative procedures cannot be an excuse where we can support us.” At this point, Mónica García has committed to “shorten the deadlinesexpedite the processes and become what this law is. “
According to the V EL OBSERVATORY, “Currently, only three autonomous communities” offer aid, “with important disparities between them.” “Some communities guarantee a benefit of up to 1,000 euros per month without justification, while others require the presentation of invoices to compensate for certain specific expenses. At the opposite end, there are territories where no economic help of this type is contemplated,” denounces the text.
In this regard, García has indicated that last January the Ministry presented to patient associations a development plan of the law and that, since then, “key” works are already being implemented such as training to health or advances in the creation of a national registry of patients – currently, there is no reliable fact of ELA patients, which specialists estimate between 3,600 and 4,000 people – to “better plan the resources, anticipate more resources, anticipate responses and give more responses, anticipating adjusted to real needs. ”
The Minister of Add has committed to “advance and improve in everything related to health coordination.” The law, in which the minister has recognized “Improvement margins”includes measures “that compromise both the State and the Autonomous Communities, so our goal is that their implementation be the most coordinated and as coherent as possible throughout the territory. We will work and work side by side with the CCAA because the diseases do not understand borders. Each of us we have to develop the maximum of our competences where we can. Only from institutional collaboration we can guarantee that the application is equitable and fair, regardless of the place where you live. “
However, the report includes more inequalities among the territories, such as “only six communities have patient records.” According to the data of the Francisco Luzón Foundation, only the Community of Madrid and the Canary Islands have a reference unit that works five days a week. In addition, there are five autonomies -Madrid, Valencia, Andalusia, Navarra and the Canary Islands – who have specific clinical guides and protocols.
Regarding the existence of Centers, services and reference units“reality points to a great territorial diversity,” says the report, which specifies: “While in some territories such as Andalusia, Aragon, Cantabria, Catalonia, Balearic General, most of the CCAA of Spain have developed at least two modalities of specific centers, services or units for the care of the ELA. “
On the other hand, if the CCAA are observed that have ELA unitsThe report states that “in most territories there are between one or two neurology professionals on average for each one”, but there are differences between the territories. Thus, Catalonia would have 9.6 specialists on average per hospital with ELA Unit, while Andalusia or Galicia would have 1.1 or 1.2 media specialists, data that the Francisco Luzón Foundation asks to treat with caution because the data of each health center is not available.
The most equipped ELA units are the so -called ELA reference units. He V OBSERVATORY He points out that the regions that have one of these are Andalusia, Aragon, Cantabria, Catalonia, Community of Madrid, Navarra, Balearic Islands, Galicia, Basque Country and Murcia. Except in Madrid and Catalonia, all of them with nine and 14 specialtiesamong which are Neurology, pneumology, rehabilitation, physiotherapy or psychotherapy, among others.
Centralization of appointments
With respect to the space and appointments regime, while in five of the 17 autonomies they develop in a unique space, but in several quotes, in four others are made in a single appointment, although in several spaces. In addition, in the Balearic Islands and Canary Islands are carried out in space and unique appointment.
In this sense, researchers conclude that “it is essential to establish reference units in each province” to “guarantee multidisciplinary attention and have adequate human and technical resources.” “Given the speed with which the ELA progresses, the existence of these centers would significantly reduce diagnostic times. The difficulty of displacement of affected people, especially in advanced phases of the disease due to the dependence of invasive breathing systems and communication, makes necessary a model of attention that minimizes transfers. Centralize assistance in a single displacement would facilitate more agile and comfortable access To health professionals, improving the quality of life of patients and reducing physical and emotional wear, “says the report.
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