“The lack of an adequate intake can; bring the sick to the choices rinunciatarie, dictated by the anguish, despair and loneliness,” explains Mario Melazzini, the national president of Aisla (Italian Association of people with Als), spoke yesterday in Rome at the conference ‘Incurable does not mean untreatable: the service model of Als in palliative care’.
“After the hunger strike of some sick people, yesterday afternoon at the ministry the council on neurodegenerative diseases affronterà the problem of home care qualified,” recalls Melazzini.
“Thanks to the law on palliative care finally, there is the potential to performà that these cures are accessible to the people with Als”, says Melazzini, but remains a “node” of the qualified assistance of the patients.
“there is a big discrepancy North-South, but also from area to area and from Asl to Asl – testifies to the president of Aisla.
“Sick and family members must be adequately informed of all the options available to you to better cope with the everyday stresses Melazzini – For this is born the series ‘Living with Als’, realised thanks to the contribution of Sanofi-Aventis – which examines issues related to nutrition, breathing, physical, but also psychological aspects and aids available, from those for the communication.”
Six volumes ‘from the part of the patients’, “with useful practical advice, written in a comprehensible language”. That of the taking in charge of the sick of Sla is “a big problem. An important contribution può come from the knowledge of operational tools that will aid the family in day care”, highlights the Angelo Zanibelli, director of Communications and institutional relations of Sanofi-Aventis Italy, explaining the reasons for the support of the editorial initiative.
Zanibelli watch with extreme interest to the law on palliative care. “Our first hope is that the process is concluded, the più quickly as possible, and that the new Lea to adopt the basis for access to optimal care and to define guidelines for the management of people with Als.
According to the specialists present at the conference, the optimal strategy to manage patients integrates hospital and the territory.
“The sick Sla must live in the più possible out of the hospital,” explains Guido Fanelli, professor of anesthesiology and resuscitation of the Università di Parma and coordinator of the Committee on pain therapy of the ministry of Health – All of the resources they have to point to this.”
Today, “there are già 30 Departments for the sick and frail who must deal with taking care of the patient with Als. In the future, ” concludes Fanelli – we should improve this model.”
Page published on 12 November 2009