of mresciani : Friday evening and Saturday morning last weekend, I attended a conference on rare diseases .
I could not attend all three days but in any case my presence was somewhat "experienced."
Friday evening I attended a sort of round table, where doctors displayed their projects and ultimately the public could ask questions. As a result we
pose questions, but ours were the effects of findings of fact.
All of us parents, we agreed to see that our local hospitals do not have suitable equipment to follow some rare diseases, we must always move out of Sardinia in highly specialized hospitals, where appropriate, with regard to the disease of our children, there are many more. These hospitals had more cases may give us more experience in order to treat or at least consider an approach to these diseases.
The voice of parents we had a unique voice, even as regards the work of doctors.
The doctors do not work as a team but each on their own, contrary to what constatatiamo and appreciate the various centers outside the region where we go.
Working in groups means coming to terms, express concerns and have other opinions, so talking about rare disorders, are frequent doubts and therefore the treatment may be submitted to the patients may be different.
is popping up in the debate that the cuts, which do not allow the creation of jobs, but many years ago, I remember that you still worked the same in solitude, and I talk about the years when there were no problems of recruitment.
I note that two years ago in our town was the purchase of a large machine to be useful for very detailed analysis, however, that machine is already obsolete. I was told that the target of patients seen, this machine was quite satisfactory.
What, then?
continue to leave for the continent, given also the statement of our Regional Minister of Health who, on Saturday morning, which claimed that we had understand that our movement would always be there in the peninsula as a region as small as ours could not be charged for equipment that would be too costly, so for some rare diseases will continue to authorize travel reimbursements to be followed in other centers outside the region. Meanwhile
close many rehabilitation centers, are missing because they are too few speech therapists, hospitals, doctors working in inadequate numbers to public needs, not to mention nurses and technicians: a very sad situation. Several centers
trudging, very long time for inspections, visits ....
And our children?
Per loro, i tempi, sono importantissimi.
Tuttoggi mia figlia, a 16 anni, non ha il nome della sua sindrome.
Cosa mi hanno risposto i medici presenti al convegno?
In media ci vogliono 10 anni per questo tipo di malattie rare....
Con i tempi della nostra sanità locale, forse non arriveranno mai, aggiungo io!
Sabato poi c'è stato un vivace scambio di opinioni con l'Assessore alla Sanità Regionale, un gruppo di genitori (c'ero pure io) ha contestato quello che era un suo discorso sulla situazione della nostra 162, un discorso che puntava come al solito sulla non correttezza di tante famiglie che avrebbero abusato di quella legge, approfittando di tali contributi.
Abbiamo respinto e puntualizzato many of his statements, especially when he said that families use the money for the 162 non-project dedicated to the disabled person but to pay the maid!
We are not certain to be even accused of meanness! If we have to check those encountered similar scams should intervene, but can not afford to put to shame the entire category, as if to simulate divertissimo disability of our children! And here I want to stop.
What the Department of Health of Sardinia has exhibited in his speech was disconcerting controribattuto and largely explained by Marco Espa, which besides being a politician is a Dad with a capital P. Ben
are, therefore, the conventions for rare diseases if there is news, but also critical, however, lead to something positive or at least bring out the truth, because who is to table the President called for dialogue with the public must demonstrate knowledge of laws and practices and otherwise has a duty to update, because public health is not administered in words.
The debate should be a source of information and we want to discuss, but also to discuss the future to reach solutions.
Why our children have rare diseases, but we hope that the future for them is a bearer of good solutions.
We hope very much.
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