A direct and personal contact so as not to leave the patient disoriented in front of a doctor who has never seen him before. This is the strategy adopted by the Neurology Complex Operative Unit of Fermo, directed by Doctor Patrizio Cardinali, where the clinics dedicated to Multiple Sclerosis (and related diseases) are managed with a management that reports to each neurologist, in in order to ensure a close doctor-patient relationship. In other words, the patient always finds the same neurologist during check-ups, because the goal is to better assist patients and their caregivers. Precisely for this reason the Centro di Fermo participates in StayHome, the project developed by Biogen in collaboration with AISM (Italian Multiple Sclerosis Association), with the aim of bringing treatments closer to the home of patients to facilitate their life.
The lack of nurses
At the national level, according to the data recently shared by AISM and in the Multiple Sclerosis Barometer 2022, the trend emerges, already observed in the last edition of the survey, which sees the number of patients with MS per neurologist and per nurse to increase significantly in in relation to the size of the Treatment Center. This data suggests that in the larger Centers the availability of staff dedicated to MS is overall lower and that it indicates a difficulty of these Centers, which often attract patients from other territories as well, in managing the volume of people with MS. A situation that, in addition to involving the large Centers, also extends to smaller centers, such as the Centro di Fermo, which in response to the needs of people with MS has developed the idea of guaranteeing the patient always contact with the same. doctor. This model is certainly a strong point of the Marche Center, but there are still some critical issues. “The neurologist – explains Eugenio Pucci, who has been dealing with MS for many years and currently works at the UOC Neurology of the A. Murri Hospital in Fermo (ASUR Marche) – is unfortunately not assisted by dedicated nursing staff, except for the nursing expert in drug administration. Although qualified and collaborative, this staff, operating in a multi-specialist hospital setting with a high workload, is unable to intercept and respond to the heterogeneous problems that MS poses. In particular, the figure of a case manager is missing ”.
The secretarial and booking activity
Another critical issue on which we want to intervene thanks to the StayHome project concerns precisely practical issues: “There is a secretarial and partially front-office activity of the neurological outpatient activity that includes that relating to MS”, explains Pucci who specifies: ” For the different needs of the person with MS, the neurologist has direct courses structured ad hoc only for pain therapy, for infectious disease counseling and for Neuroradiology, but the reservation slot dedicated by the Radiology Service of Fermo is currently insufficient to cover the needs of all patients taken care of who, therefore, must turn to other offices “. As far as rehabilitation is concerned, there are still no structured protocols even if collaborations are underway with local rehabilitation structures and the rest of the Region.
Recognition of resources and areas to be improved
The first phase of the StayHome project in Fermo focused on the recognition of resources; on the congruity with the regional PDTA approved in July 2018 and on the evaluation of the available management data. “As regards the first two points – explains Pucci – the survey made it possible to verify some possibilities but also many difficulties in structuring collaborative projects for some activities that lack direct and coordinated access: specialist consultancy (dermatology, ophthalmology, urology, gynecology , ENT) and above all psychology and neuropsychology, which should also have specific expertise on MS, while currently no resources are available “. Other points on which to intervene are social assistance, the services of provision of aids / aids and palliative care services, the latter completely non-existent in the territory of the Marche province.
PDTA and real patient management
The StayHome project also made it possible to bring out the profound discrepancies between the current management of the person with MS and what is reported in the regional PDTA. “This PDTA, which also received excellent recognition from the Italian Multiple Sclerosis Association involved in its drafting – says Pucci – specifically envisaged the development of MS Centers that should have a transmural organizational structure and be able to directly or indirectly manage settings hospital, territorial and home care, in a multidisciplinary and multi-professional way, for the different phases characterizing the course of the disease, with a view to real health-social and territory-hospital integration with care managers “. As far as data management is concerned, considerable difficulties have been noted, often lacking a unitary and easy-to-access management for many parameters useful for clinical governance and it was thus possible to make useful corrections.
Overcoming the limits of techno-bureaucracy
But what are the treatments and services in this area that a patient with MS can benefit from directly at home? “No one who is organized and supervised directly by our clinics and who is personalized for MS”, replies reluctantly Pucci specifying that “the services available in the area are activated with the collaboration of GPs”. But an advantage that people with MS who belong to the Fermo clinics have is that of a prompt availability by phone or through the instant messaging system and e-mail of their neurologist of reference. “I fervently hope that the ‘privacy techno-bureaucracy’ that is limiting the effectiveness of technology in the healthcare field will not hinder us. Personally I consider these tools fundamental for an excellent management of the patient and my televisions rely heavily on my private mobile phone and not on hospital devices with poor access and handling “- declares the neurologist.
Establish connections
After the phase of reconnaissance of the available resources and the critical issues on which to intervene, the StayHome project in Fermo is in the data processing phase in order to implement concrete actions. An example? “Considering that the users come from different areas of the Marche region – replies Pucci – we are striving to structure collaborations with the clinics of the Regional Health Districts to have easy access for intravenous infusions in locations close to the patient’s home and through Integrated Home Care for patients with greater disabilities “.
A model of palliative care
At the Centro di Fermo, then, the aim is to develop a model of early and simultaneous palliative care for people with high disabilities: “With my Director Patrizio Cardinali, we are starting to work on the foundations of this model, or by promoting and implementing shared planning of care provided for by the law on consent 219/2017 ”, explains Pucci who is very keen on this issue.
The stimulating action of the StayHome project
In short, at the Centro di Fermo there is excitement and the desire to carry out concrete projects that can improve the lives of patients and their families. What are the next steps? “Now I would like to stop and see if the proposals put forward are satisfied, hoping that the StayHome Project will help stimulate the leaders of the health organization of our Region to reflect on why the MS management model proposed in the PDTA is widely disregarded”, he replies Pucci who concludes: “A model that could also find ample points of convergence for the management of other chronic neurological diseases, optimizing the resources to be put in place with a view to an initiative and proximity medicine that involves sick people, their loved ones and communities in general “.