Covid, patients: ‘Thanks to correct information, the pandemic is less scary’

“Thanks to the correct information, the pandemic is less scary for everyone, especially those who are sick. As an association within Allies for Health, we have to try in every way to transform their fear into awareness. And we have succeeded. : through correct information, talks, webinars, videos, podcasts and our experiences, we have addressed very important issues, from the vaccination campaign to the role of family caregivers, from gender medicine to return to treatment, from the management of chronic telemedicine “. Thus Felice Bombaci, coordinator of the Ail Patients Group, during the presentation workshop of the new board of patient associations of Aleati per Salute, a portal dedicated to medical-scientific information created by Novartis, of which Ail patients was a member until 18 June last together with Aism, Apmarr and Europa donna Italia. “The pandemic has led us to use new digital tools – continues Bombaci – to stay together and respond to the needs of our patients, so we tried to bring to the board, who for the oncology area, who for the general medicine, the problems that patients experienced and lived in that difficult period. And we helped them to solve them. How? First of all, by providing them with correct information. For example, many elderly patients found themselves alone, disoriented in front of the doctors because they did not they had caregivers at their side. In fact, these very important figures could not access the hospitals. So we suggested telematic methods to allow the caregiver to participate in the medical examination, albeit remotely. It was a team effort that allowed the creation of the portal, on which valid professionals in the sector work. A team effort that will go on, even if no longer within the board of the the patient associations of Allies for Health “. For Bombaci the health emergency “offers us an opportunity, that is to build a new world of health and always be protagonists of the future of our health care”. “Today information travels fast – says Antonella Celano, president of Apmarr, the national association of people with rheumatological and rare diseases – and it is followed at the same speed by disinformation, but often what we need on the web does not give the desired results. And to prevent people from falling into the trap of fake news, as patient associations we have decided to contribute the creation of a portal dedicated to medical-scientific information, with reliable, certified and quality news “. Maria Rosaria Di Somma, councilor of Aisc, the Italian Heart Failure Association, echoes her: “The involvement of the patient and the strong presence of the associations that worked in perfect harmony – underlines – and in a transversal way have carried forward the patient’s voice. ‘goal of the Allies for Health portal is clear: to improve the patient’s living conditions by now increasingly involved, because the protagonist is the patient, his history and not the pathology “. For Rosanna D’Antona, president of Europa donna Italia, the Movement for the rights to the prevention and treatment of breast cancer which brings together 168 associations and is present in 48 countries, “the exchange of experiences and information within Allies for Health has been fundamental. Although different and heterogeneous, with all the associations of the patients I have worked with in the last year and a half we have found commonalities to respond to the requests and needs of patients and bring the their voice in the places where their health is decided, at national, regional and European level “. Finally, Paolo Bandiera, Director of General Affairs of Aism-Italian Multiple Sclerosis Association: “Also thanks to our debates and the moments of discussion promoted by Allies for Health – he remarks – the issue of caregivers is back on the political agenda. that, 3 years after the 2018 Budget Law which established the 68 million fund for the years 2018/19/20 to support those who take care of a family member with disabilities or who are not self-sufficient in a non-occasional but long-term period, was made available to the Regions, with a decree of January 2021. Right at this moment the Regions are launching guidelines for the planning acts to use these resources. Instead, the single text that guarantees health rights is still missing. social security and insurance protections, accelerated courses dedicated to caregivers, as well as training because there are many challenges in facing the complexity of chronicity “.