“We are very happy, but also worried about home care which only 2 years ago was the key goal of World Rare Disease Day. Much has been done since then, but there is still a lot to do“. Like this Paola Binetti, President of the Parliamentary Intergroup for Rare Diseases, speaking this morning at the round table ‘PNRR & Rare Diseases’, on the occasion of the presentation of the 5th Ossfor Report.
Home care, recalled Binetti, it is the “link between the assistance that the sick receive through the centers of reference”, almost always within hospitals, “and what will be the community houses to which they could have access for the monitoring of therapies, but also for those non-pharmacological therapies required by law (physiotherapy, speech therapy, occupational therapy, etc.). reality even today we can say that rare patients find the answer exclusively in the reference center of excellence to which they turn. This transmission belt with the territory is missing, which is made up of knowledge, skills and services rendered to rare patients “.
And about the work of the hospital pharmacist, Binetti has no doubts: “It is important – he maintains – especially when he delivers the medicines to the patient, once discharged, so that when he returns home he does not have to face prescription gaps. we want the patient to find the drugs in the closest possible proximity. We cannot think that the hospital pharmacy in a center of excellence should be the only way for the patient to get the medicines they need.“. So all this too requires” a rethinking of the assistance chain. We must insist a lot on these two points through the Ministry of Health, through the technical tables that have been set up, but we must ask for a step-by-step explanation of what the patient must do to obtain what he is entitled to “, concludes Binetti.
#Binetti #lot #work #home #care