Small, but full of history and surrounded by a wonderful sea that makes the treatment of those who have to deal with Multiple Sclerosis less painful. Right here, in fact, there is a regional reference center for this pathology that follows 1,500 patients from all over Sicily. It is the Multiple Sclerosis Center of the G. Giglio Foundation of Cefalù which is part of the ten national reference centers participating in the Stay Home project.
The distance that weighs
In Sicily there are 9,500 patients with Multiple Sclerosis of which some are not followed by a reference center because in a more advanced stage of the disease and the others refer to the Center of Catania and that of Cefalù, a city that has just 15 thousand inhabitants. . The biggest problem for patients is the distance: “Some of the nearly 1,500 patients we follow – explains Luigi Grimaldi, head of the complex Neurology Unit of the Multiple Sclerosis Center of the G. Giglio Institute Foundation in Cefalù – come from Syracuse, which is 300 kilometres. This means that they have to travel 600 each time. Others come from Sciacca which is over 400 kilometers away ”. And this is not an occasional event, given that patients carry out several visits and tests in a year, during which the patient does not arrive alone: ”In order to come to us – continues the doctor – they must organize themselves because some have discomfort physical or they are minors or on the contrary they are elderly so they cannot drive ”. In short, an entire family often leaves to come to the Center of Cefalù, leading to a significant burden from both a welfare and an economic point of view.
Participation in the StayHome project
Precisely because 90% of patients come from over 100 kilometers away, the Cefalù Center represents a particular case study: “We were selected also because our center is very dynamic: we have a dozen trials for multiple sclerosis. and in many cases we have been the so-called ‘top enroller’, that is, the Center that enrolled the largest number of patients ”, explains Grimaldi. Despite the dynamism and ferment that characterizes this Center, there is no shortage of critical issues and participation in the Biogen project aims to solve them starting from the needs expressed by those who work there: doctors and health professionals who actively participated through a series of interviews to identify the areas on which action is most urgent. “The first criticality – explains Grimaldi – concerns the organization of medical examinations which must aim to facilitate patients. For example, in these days we have two doctors from the team who are positive for Covid, this means that we would be forced to postpone visits to two clinics thus blocking all patients who had already organized for the trip with enormous inconvenience “. However, the critical issues that emerged did not remain only on paper, given that the implementation phase of the Stay Home project aims to reduce its impact by strengthening the network between the Center and the territory, involving the ASPs of Enna and Agrigento. In fact, the Cefalù Center and the two ASPs will collaborate in guaranteeing continuity of care and reducing the impact of the patient’s distance from the Center.
Rehabilitation without hospitalization
Another critical issue is that of rehabilitation: “In our Center – underlines Grimaldi – we have almost 100 places dedicated to rehabilitation, but the Region does not allow patients with multiple sclerosis to be hospitalized except in particularly serious circumstances. This implies that most MS patients in need of low to medium impact rehabilitation should come for 15 days in a row each day, but given the geographic distances this is impossible unless they rent a house and incur other expenses. “. The ideal would be to visit them and carry out the rehabilitation on site for the first time, then organizing everything so that they can be followed remotely: another aspect that will be put at the center by the collaboration between the Cefalù Center and the two ASPs.
Treat yourself at home
Another important aspect to improve concerns the dispensing of drugs: “Patients come to be checked and to have a drip that they could also do at home if there was an agreement with the Provincial Health Authority”, continues the specialist. But isn’t administering these drugs – very expensive by the way – at home risky? “Of course it would be better to do it in a Center to avoid potential side effects due to incorrect administration or that falling in handling them go to waste, but everything could be done with peace of mind at the patient’s home having the availability of home nurses to make the infusions” , Grimaldi replies. And the connection problem? “It exists because some areas of Sicily and some families do not have a good connection, but in every town there is a clinic with a medical station that can be reached in ten minutes instead of the four hours it takes to get to Cefalù”.
The role of telemedicine
The issue of telemedicine, key for remote patient management, is also at the center of the Stay Home project: “We identified the Centers of Enna and Agrigento, involved the General Managers and interviewed the various actors involved in the treatment to understand how to help patients ”, continues the specialist who adds:“ I trust a lot in telemedicine to solve many situations, for example the presence of an expert nurse on site who could be guided remotely, but all this requires reorganization, will and collaboration; this is why we are participating in the Stay Home project, to be concretely operational thinking about what is best for patients “.