Paper sings. In this case, the first Italian Guidelines on Multiple Sclerosis, a chronic inflammatory disease that affects the central nervous system and which 133 thousand people live with in Italy, are singing. A document of about 200 pages where it is written in black and white, in a simple and explicit way, how people with MS must be taken care of: from diagnosis to coordination of assistance, from treatment of relapses to the examination of the factors that can influence the onset of relapses or the progression of the disease, from drugs that are capable of modifying the course to rehabilitation, symptomatic therapies and the need to periodically re-evaluate patients. The Guidelines were created under the aegis of the Italian Society of Neurology (SIN) and are the result of the work carried out by a multidisciplinary group composed of 19 specialists, representatives of 10 Scientific Societies, and a representative of the Italian Multiple Sclerosis Association, with the methodological coordination of the Gimbe Foundation.
A tool for demanding rights
The document published by the ISS was based on the guidelines drawn up by the leading research and assistance bodies at an international level, but was entirely adapted to the Italian situation and updated on the basis of the most recent publications on the subject. “The Guidelines trace the tracks on which doctors must move, collecting the strongest scientific evidence but adapting the recommendations on Italy”, he explains. Mario Alberto Battagliapresident of the Italian Multiple Sclerosis Foundation.
StayHome, a project that brings treatment for Multiple Sclerosis to the patient’s home
“They transform information into enforceable rights”. In other words, patients can take advantage of what is written in the document when talking with doctors and ask for the Guidelines to be applied, where they are not. In concrete terms, this means, for example, guaranteeing all people with MS the most appropriate treatment according to scientific evidence and not the cheapest or dubious treatment. Also because, as he points out Gianluigi Mancardi, coordinator of the whole SIN working group: “In the document there is a list of things that must not be done, that is the erroneous alternative practices to medical practices recognized and scientifically validated”. And again, being able to ask for rehabilitation as an integral part of treatment, as well as symptom management.
Many specialists, one coordinator
From the point of view of clinical management, the Guidelines speak clearly: “MS is a disease in which several specialists are involved and a coordination of assistance is established by the neurologist”, explains Mancardi. The neurologist is also entrusted with the clinical and therapeutic management of optic neuromyelitis. “It is really important that this is written in the document because as a patient association we have made an effort to ensure that this rare and serious disorder of the central nervous system should not be managed by rare disease centers but by neurologists,” says Battaglia.
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Territorial assistance
The Guidelines actually reflect what is usually performed in the numerous MS Centers spread throughout the national territory. And they are therefore very important because they constitute a clear and precise point of reference for clinical practice, for the National Health Service and for all those involved in the management of people with MS. The ultimate goal is in fact to standardize the behavior of those who deal with MS throughout the country by providing precise indications on the actions that must be taken in order to further improve the assistance to people suffering from this disease.
“With a possible effect of decreasing migration of patients from one region to another,” says Mancardi. Finally, in the document there is also important information for the reform of the National Health Service desired by the National Recovery and Resilience Plan. “The PNRR draws up the principals in the area that will have to guarantee territorial assistance. The Guidelines – concludes the expert – help to understand which services can be managed and provided there and which are indispensable for people with MS”.
Multiple Sclerosis Center of Sassari: at work to give patients time for social life
