The XVI National Annual Report on Chronic Policies in Italy emphasizes that patients suffering from chronic diseases have trouble accessing services and face economic and psychological difficulties, yet no solution has been found. Furthermore, more than a year after the introduction of the new LEA, there are still patients who are not being cared for.
What the report reveals
“Lots of laws, little action” is the slogan that sums up the report presented on May 29 in Rome by the National Coalition of Associations for Patients Suffering from Chronic Disease (CnAMC), part of Cittadinanzattiva (the Active Citizenship Group). More than a year has passed since the new LEA (“essential levels of care”, or rather, the national minimum statutory benefits package) were introduced, but people suffering from chronic and rare diseases have noticed a significant standstill. If “putting the patient at the center” is the main objective, we still have a long way to go.
The greatest difficulties, however, are with what has already been done. The assimilation of the Chronic Disease Policy has been moving forward at different speeds in each region while the new LEA are still hampered by the failure to enact two decrees that define the maximum charges for outpatient and prosthetic services.
The associations say the new Lea are undetectable
Fifty patient associations for rare and chronic diseases participated in the Report in order to assess the level of compliance with the National Chronic Disease Policy put into effect almost two years ago. According to 35.7% of the associations there is no prevention plan and 19% of the association say this is also true for only children. In 98% of the cases, prevention programs are promoted by the associations themselves. More than 73% have reported late diagnoses due to a lack of knowledge of the disease on behalf of family doctors and pediatricians (83.7%), underrating symptoms (67.4%) or a lack of specialized personnel or local clinics (58%).
Lack of integration between healthcare assistants and specialists
Almost all patients complain of the rift between healthcare assistants and specialists, lack of continuity between hospitals and local clinics (65.1%) and the lack of adequate assistance in homes (45.8%). Health and social services and integrated care pathways are only implemented in certain situations. In structures that implement integrated care pathways, only half the people feel truly inserted in the clinical pathway. Integrated care pathways, however, that become concrete actions bring about many positive effects such as automated scheduling of appointments and exams (50%), less direct costs (28.5%) and less complications (21.4%).
Psychosocial difficulties are still underestimated
A holistic vision of the patient includes the assessment of psychological and social difficulties, which the annual report reveals are still very much underestimated. With regards to specific needs, linked to specific age groups:
70% of children, for whom the major problem is telling people about their disease, cannot always participate in curricular and extracurricular activities
64.8% of adults report problems in obtaining recognition of civil invalidity and handicap, 59.4% report lack of direction in services offered, 51.3% report a lack of protection in the workplace
The elderly report mostly problems with travelling for treatment (84.3%), social isolation (75%) and economic difficulties (71.8%)
Putting words into action- five priorities
Cittadinanzattiva has listed five main priorities:
Put words into action by fully implementing what was already provided for in the law
Guarantee a uniform adoption and implementation of the National Chronic Disease Policy at regional and corporate levels
Simplify and standardize bureaucratic procedures across the nation
Give greater attention to delicate situations such as social, economic and psychological problems while considering the age of the person
Develop national provisions to restructure the pharmaceutical sector and, consequently, access to pharmacological treatment, explaining very clearly the roles, timeframes, responsibilities and requiring the participation of citizen and patient associations
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