«It is a network of human relationships», so Rosalia Chendi, physiatrist, president of the Uildm Varese section, summarizes the experience of her association, which provides an articulated network of services throughout the province of Varese, made possible by the creation of links between the families of patients and a whole series of public and private realities. The project was presented in Milan on the occasion of the sixth Neuromuscular Disease Dayduring a round table on theimportance of networks at every levelbetween basic researchers and clinicians, between specialists of different disciplines, between clinicians and patients, between clinicians, associations and institutions.
The project “At home, breath and life”, which later became “Life beyond home”, sees active a medical-physiotherapy team, currently made up of Dr. Carlo Bianchi, physiatrist of reference of Uildm Varese, a respiratory physiotherapist, a volunteer pulmonologist for the reading of oximetry, two psychologists and an art therapist educator, to support people with neuromuscular diseases. These pathologies often lead to a progressive loss of muscle strength and compromise vital functions, leading to very serious disabilities. Clinical complexity requires patients to be followed up in specialist centres, often far from home. The project, started to provide a continuous home respiratory monitoring service precisely because of the characteristics of the severity of the disease, led to the creation of a network between the home and the reference clinical diagnostic and rehabilitation centres (such as Nemo del Niguarda, Don Gnocchi and the Besta Institute in Milan, Villa Beretta in Costamasnaga, the E. Medea Institute in Bosisio Parini, recently the AIAS Rehabilitation Center in Busto Arsizio). Chendi explains: «The structured collaboration with the centers allows us to send them the collected data. For the patient and his family, this means not only reducing the always complex journeys for hospital checks, but also promptly reporting any malfunctions or problems, avoiding the worsening of the situation and the need for emergency interventions”. The association sends a letter to the family doctor or paediatrician to inform the Uildm Home Service of taking charge of the person.
As well as a solid network around the patient and family, here all the ingredients of today’s healthcare are there: home care, territoriality, social-health integration, the patient at the centre, which are however created by volunteers who dedicate their time and skills, often also professional ones, to others .
The project was born before Covid. During the pandemic, after an initial brief interruption, it restarted with all the necessary protective measures, benefiting from a contribution from the Varesotto Community Foundation. Thanks to the goodwill of the volunteers and the donations received, the number of patients followed up and that of the staff employed has grown, so much so that it is been taken as an example by other associations equally committed to creating links between people’s health and health and social institutions. Furthermore, the network of collaborations has expanded to include medical device companies, necessary for in-depth diagnostics in some seriously ill patients, and the voluntary association «Angeli in moto» of Varese, which has made itself available for movement of these medical devices to the patient’s home, relieving the medical team of this task.