The political week was, once again, full of tensions. But the legislator found an unexpected truce scenario. This was confirmed this Thursday when Congress unanimously approved – not a single group voted against or abstained – the Amyotrophic Lateral Sclerosis (ALS) Act. This is the second time a consensus has occurred. The first concerns the constitutional reform aimed at removing the word disabled from the Magna Carta.
Now that it has the yes of the chamber, the text only has to go through the Senate to enter into force. Publication at the BOE is very close. However, ALS patients, those who should be most happy with a law that guarantees them new rights, remain extremely cautious. Now comes the big problem: financing the law – where will the money come from if there is no General State Budget and how will it be co-financed with the autonomous communities – and that all territories apply it equally?
I don’t want to be pessimistic, but it’s no small feat. The standard is revolutionary because it involves changes in the structure of the system. For example, this requires that addiction treatment be completed in less than three months. This is the responsibility of the autonomy authorities and waiting lists are regular. Very, very far from that time.
Round-the-clock care in advanced stages is an expense that no one has explained how it will be managed. Regulation is needed to anchor the development of the law, which should take as little time as possible. “Now it’s time to put the pieces back together,” summed up Sumar MP Rafael Cofiño. Among the outstanding questions is defining to which “irreversible and very complex neurological processes” the law applies.
Patients are very willing, between excitement and fatigue, to scrutinize this law. I spoke to three of them this week. Two, Raquel and Jorge, responded to me with their eyes thanks to a system that allows us to capture the movement of their pupils.
I was also with Juan Antonio, whose life changed five years ago. He was 29 years old and instead of becoming independent, his mother had to go live with him. I was very surprised by the human resistance of these people in the face of an inhuman situation: the certainty of their own end in a short period of time and the security of a very difficult deterioration to go through. Here I have collected our conversations: his expectations, his desires and his way of looking at what is happening.
How long can life expectancy be extended?
The health system, a purple dot?
This is still missing. The latest report on the detection of gender-based violence in the national health system (SNS) reveals that there are still gaps that prevent situations from being detected in time.
Notification systems have been improved. However, sexual violence remains the least detected, male professionals – surprise – are much less trained than women and some data is disappointing. For example, between 70 and 90% of reported cases do not specify elements as important as the professional situation of the victim. It is still unclear what data can be duplicated as it is collected through clinical history but also with injury reports. A challenge, wow.
Before finishing, I do not want to forget that this week we celebrated World Mental Health Day and I would like to remind you that Many people in Spain cannot afford to seek help from a psychologist or psychiatrist. nor is it in a position to wait months for a public consultation.
We have come this far. I will wait for you next Saturday at the same place and at the same time.
Sofia
