“Home care should be a full and guaranteed right for people with disabilities, including of course those with Rare Diseases. Too often, however, this right is denied, care is not guaranteed or provided at the minimum terms”: this is said by OSSFOR (Observatory orphan drugs), which has launched an online survey, aimed at all those (patients, family members, caregivers) who are entitled to home care in all its forms. The aim is in particular to expand the quantitative availability of data in this area “home care should be a full and guaranteed right for people with disabilities, including of course those with Rare Diseases. Too often, however, this right is denied, the service is not guaranteed or delivered to the minimum”: the say from the OSSFOR, the Observatory Orphan Drugs, was born five years ago, a joint initiative between the CREATE Health, the Center for Applied Economic Research in Health) and OMAR (Observatory for Rare Diseases), which are involved in this sector to shed light on the actual deficiencies, which in some cases are believed to be true and its absence, on the services (ADI Integrated Home Care) in Italy.
In this regard, OSSFOR has developed an online survey, which can be completed quickly without the need for registration, in order to provide a picture of the situation. This survey, which will be online until 3 October, is part of a wider project structured by the Observatory, which also involves other actors at regional and corporate level. The results will then be published in the sixth OSSFOR notebook and in the Fifth Annual Report to be presented in December.

“It is absolutely essential,” says Barbara Polistena to CREATE Health and the University of Rome “Tor Vergata” – to promote the conditions to leave the people in their own homes or in residential contexts structured to facilitate the maintenance of adequate levels of self-sufficiency, as well as to ensure that home care is supported by the use of the tools of digital health, by reducing the number of physical accesses. In order to strengthen home care, investment in staff should be complemented by some reforms which are a necessary condition for the development of genuine community care. And first of all, a full integration of the management of social services with the National Health Service must be pursued”.
“The humanization of the response of the National Health Service, he adds, requires that the home be elected as a place of care preferred, also because only with the maintenance of the persons in their place of normal life it is possible to protect their relationships, social relationships and quality of life. With the few data currently available, it is evident that home care is, in Italy, completely insufficient and also distributed unevenly on the territory. This survey of ours will therefore allow us to understand what are the real shortcomings of home care for rare patients”.

“But what exactly does ADI mean? – that’S OMAR’s question. We talk about all the services and social-health interventions, through services provided by different professionals, provided to the patient at their home, with the aim of avoiding hospitalization or placement in a residential structure beyond the time strictly necessary. Home care can be addressed to children, adults or the elderly and is provided by the ASL at the full expense of the National Health Service, as provided for by the Lea (essential levels of care). It includes medical, nursing and socio-sanitary treatments. But also rehabilitation, basic care of the enticed person, diagnostic investigations, assistance for medical devices, assistance for artificial nutrition, provision of drugs, psychological support, also to the family and/or the caregiver”.

“Unfortunately-continue Omar – in Italy the ADI is not guaranteed to all those who would need it. In particular, in the field of Rare Diseases, hundreds, if not thousands of cases have been reported in which families during the Covid emergency phase have found themselves completely managing tracheostomized children and adolescents, artificially fed and in need of Round-the-clock assistance. Patients to whom medical and social assistance has been completely eliminated. Emblematic cases of how most of the resources of our National Health Service have been dramatically shifted to the Covid emergency, exasperating the already precarious situations of high intensity and complexity of care. All with very violent relapses on families and, in particular, on women, mothers and caregivers par excellence”.

“Home care – conclude Dall’OMAR-means, however, also home therapy, rehabilitation, psychological support. Interventions that were extremely lacking, especially in some regions, even before the health emergency. It is therefore time to argue a renewed need for patients and families, with plausible quantitative data at hand”.

The survey launched by OSSFOR is therefore aimed at all those (patients, family members, caregivers) who are entitled to home care in all its forms. Participation is anonymous and simple, through the online questionnaire of which we still remember the link. (S. B.)

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