A Hospital-home Network for the Care of Patients Afflicted with Amyotrophic Lateral Sclerosis in the Lazio Region - Italy

Project location: ITALY
Project start date: September 2013 - Project end date: This project covers various years
Project number: 2013-021
Beneficiary: Viva La Vita ONLUS


TIMELINE OF THE PRESENT ACTIVITY REPORT: From 14th October 2013 to 13th October 2014

The project "A hospital-home network for the care of patients afflicted with amyotrophic lateral sclerosis in the Lazio Region (Italy)" of the Viva la Vita Onlus charity organisation was created to meet the requirement of the ALS patient and his/her family nucleus of a support network through concerted actions that can, on one hand, act from a clinical and psychological perspective from both the hospital and the home, and on the other supply useful tools to deal with the course of the illness on both operational and informative levels: in hospital specialist support, hospital at home and transport. All these services were managed and coordinated by a dedicated call center.

The network centre is identified in a call centre for ALS patients and their families who are in contact with the Association. Two qualified operators answer calls on any type of query and information about the disease. If required, more specific queries are dealt with by specialists that collaborate with the Association or by internal services.

Thanks to this project, it has been possible to finance four specialist resources at hospital ALS Centre in Rome. In particular, two psychologists and two neurologists attached to the Umberto I General Hospital and S. Filippo Neri Hospital.

The psychologists task has been to guarantee ALS patients and their families that visit the neurological clinic of the ALS Centre support in confronting the devastating impact that this illness has, not only on the patient, but also on his/her entire family nucleus.

The hiring of two additional neurologists to the team, specialised for the General Hospital and with reliable experience of the pathology, allowed to support in the clinical diagnosis and in the follow up procedures of the ALS patients. In addition, the neurologists task has been also to coordinate their actions with the other specialists within the team so as to ensure that the patients and their families receive the help needed that responds best to the clinical and assistance requirements which, because of the nature of the pathology, are in constant flux.

The specialist resources at hospital ALS Centre, with the support of the Association, made it possible to build a protective network around the patient that not only deals with the clinical aspects but also assistance and bureaucracy.

The service ‘Hospital at home' allows for visits by specialized doctors at home to patients with ALS - whereas the ASL (local health authority) does not have the necessary funds - so that they may treat patients with ALS carrying out specialized examinations and accessing diagnostic information, which otherwise they would have to carry out in hospital. The team of the ‘Hospital at home' uses neurologists, pneumologists, ENT specialists, palliative specialists, oculists, dentists, psychologists, cardiologists and gastroenterologists. Thanks to this project, were made at home the following examinations: electrocardiograms, vascular examinations, X-rays, ultrasound, ecodopplers, blood tests and hemogas analisis and dental care.

In spite of the fact that a patient with ALS lives a large part of their illness at home they often are obliged to visit hospitals so that they can be periodically monitored for therapy of serious attacks which need invasive treatment so as to continue to stay alive (operations to the gastric apparatus, to enable them to be fed or for thrachiotomy for artificial respiration).

Unfortunately the national health service does not supply transport for these patients which could permit them to have access to hospitals.

Thanks to an active agreement between Viva la Vita Onlus and Italian Red Cross, and thanks to this project, ALS patients were able to have a free transport service to their dedicated, highly skilled.

The project has met about 300 requests from ALS patients and their families in the Lazio region.

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