ALS and rare neurological pathologies, no closure of the “Il BeNe” Center at the Bellaria Hospital in Bologna — Salute

Today the Table wanted by the Region, with the Municipality, the Ausl, the Associations and all the Neuroscience professionals of Bellaria.

Donini: “No downsizing, on the contrary we will enhance the excellent work done so far”. A new meeting is scheduled.

The Ausl and the metropolitan city of Bologna, the neuroscience professionals of Bellaria, the associations and Dr. Salvi have accepted the councilor’s appeal to work together on the definition of the new project. Expected an innovative approach based on multidisciplinary and multiprofessional communities that put the patient at the center of the process. A neurologist was hired who, since 2021, has been working alongside the program manager, who is due to retire, and the approximately 1,200 patients followed up have already started

January 31, 2023 – No closure of the Il BeNe Center of the Bellaria Hospital in Bolognabut rather a reinforcement, on the basis of the new multidisciplinary and multiprofessional model – which provides for team work – and the positive experiences conducted so far. With the purpose of make the management and care of patients more effective.

That’s what emerged from this afternoon’s meeting wanted by Emilia Romagna region with the associations that had expressed fears in view of the retirement, on 27 March, of the neurologist Fabrizio Salvi, until now head of the ALS program, ataxia, amyloidosis and myasthenia Also known as Il Bene Center (Bellaria Neuroscience), which follows over .1200 people affected by multiple sclerosis (more than half of the total), myasthenic syndromes, motor neuron diseases including ALS, amyloidosis, ataxic syndromes and other neuromuscular or neuroimmune diseases.

The director of Ausl Bologna took part in the meeting Paolo Bordonwho illustrated the proposal of the Healthcare Company, the commissioner Raffaele Doninithe councilor for health of the Municipality of Bologna Luca Rizzo Nerveall the Neuroscience professionals of Bellaria including Dr Fabrizio Salvi, the Il BeNE Foundation and patient associations. The associations and Dr. Salvi have accepted the appeal of the councilor Donini to work together on the definition of the new project.

“The work done in these cases by the Institute of Neurological Sciences of Bologna and in particular by the program dedicated to these neurological pathologies has been extraordinary, a precious legacy that Dr. Salvi leaves us that we want to develop and strengthen – comments the councilor for health policies Raffaele Donini-. We will capitalize on the experience gained, and at the same time identify models of excellence to inspire us to implement a working method based on multi-professional and multidisciplinary teams that allows for global management, networking hospital pathways with the network of local services. The goal is to contact and reassure all patients and further improve their assistance and care. We have reassured the associations that follow people affected by these diseases: the Healthcare Company and the Region arrive prepared for this appointment, the work of Dr. Salvi, whom we thank, will not be lost but on the contrary valued. We will see each other again before March 27 “.

The situation to date

The Institute of Neurological Sciences of Bologna (ISNB) is a Scientific Hospitalization and Treatment Institute (IRCCS) recognized since 2011 as an internal structure of the Bologna Local Health Authority which proposes itself as a reference center for diseases of the central and peripheral nervous system, thanks to the ability to combine clinical activities with the most advanced scientific research.
Inside the Program SLA, ataxia, amyloidosis and myasthenia ensures diagnostic and therapeutic activities for ALS and other motor neuron diseases, ataxic syndromes, amyloidosis, myasthenic syndromes. The program is mainly carried out at the Bellaria hospital in Bologna. The ISNB also hosts other operational units that follow these people affected by this type of syndrome such as the Neurological Clinic, the Neurological Clinic – Metropolitan Neurological Network or the Multiple Sclerosis Rehabilitation Operational Unit.

Actions already undertaken by the Bologna Local Health Authority

Since January 2019, significant support has been provided for assistance to patients followed by the program by the Neurological Clinic and the Metropolitan Neurological Network, while multiple sclerosis patients will be taken care of by the appropriate centre; a professional neurologist specifically dedicated to neuromuscular pathologies was also hired, to whom a specific coaching program was started for Dr. Salvi to facilitate the process of taking charge of patients after his retirement.

The prospects

The path of continuity of care will be insured for each of the 1,200 patients in the Institute’s ALS, Ataxia, Amyloidosis, and Myasthenia Program.
During the first phase, which has already started, all patients will be contacted to favor the most suitable specialist path and the taken over by the reference team for their specific pathology. Patients who need infusion therapy will continue to be taken care of at the Day Hospital of the institute and will come coverage also guaranteed for the Granarolo site.
The second phase, which is expected to be activated by next June, will be characterized by the establishment of the first nucleus of a center based on the “NeMO method” (NEroMuscular Omnicentre) for patients suffering from neuromuscular pathologies. The model places the patient at the center in all its complexity, providing for a multidisciplinary and multispecialist management.
The third phase will finally see the emergence of a real centre for the care of patients suffering from neuromuscular pathologies, to which they will be assigned dedicated and adequate spaces with a multidisciplinary and multiprofessional team characterized by high specialization and cutting-edge technological equipment, integration with the services already present within the Institute of Neurological Sciences, research activity, territorial services and home care.