This morning, Tuesday 14 March, a delegation from the Italian amyotrophic lateral sclerosis association – Aisla met the Minister for Disabilities, Alessandra Locatelli. An appointment that – reads a note – testifies to the long process of alliance between the community of people with ALS and the institutions, value and foundation of the commitment that the association has pursued since its establishment to guarantee assistance, defense of rights and the quality of life of families who live the challenge of the disease every day. At the center of the comparison attention to National plan for non-self-sufficiency and the Caregiver fund.
Aisla – well aware of the burden and responsibilities that caregivers are forced to bear and the absolute need for them to have, in turn, adequate supports – proposes a system action aimed at creating a path of interventions to improve the quality of life of people with ALS and their familieswith particular attention to those families where there are also minors.
Fulvia Massimilli, national president Aisla, declares: «Today’s meeting with our minister is prompted by the desire to stop and reflect, but also to restart with new challenges and goals. Our journey is nourished, day after day, by a broad and free discussion that looks to the future with the resources of the present». This is confirmed by the thought of the Minister Locatelli which states: «We must aim to change the systems to offer more services».
ALS – recalls a note from the association – is a rare pathology that requires specialized multidisciplinary skills. Furthermore, the high complexity of care represents a challenge for the National Health System and for the NHS, both in terms of organization and specialist skills, above all in the light of the current and future scenario which sees an enormous shortage of health professionals. A theme that places at the center the Pnrr which, focused on assistance to the elderly, proves to be inadequate in the management of the person with ALS. Aisla’s proposal is to include a professional such as a neurologist, pulmonologist or physiatrist in the role of care-manager, in the initial and intermediate stages of the disease. Likewise, in the advanced and end-of-life stages, this role should be performed by a palliative care doctor.
In the spirit of institutional collaboration that has always characterized the association, the meeting ends with Aisla’s appeal to sensitize the Italian Regions so that each individual identifies a suitable number of suitable residential structures with the appropriate skills to welcome people with ALS, especially in the advanced stage of the disease.
The Aisla delegation present at the meeting: Fulvia Massimelli, national president; Pina Esposito, general secretary; Francesca Genovese, national councilor; Grazia Micarelli, general manager; Stefania Bastianello, technical director. In the opening photo