2023-12-19 12:24:39
by Maria Giovanna Faiella
The life of patients with obstacles, between waiting lists and costs to be borne, difficulty in obtaining diagnoses, visits and follow-up tests, recognition of civil disability and Law 104 in the right time (provided by the regulations).
Having a chronic disease such as diabetes, hypertension, asthma, cancer or heart failure or a rare disease often means coming across the labyrinth of treatments, starting with wandering between doctors and hospitals to get the diagnosis, then during the treatment process when the patient still today forced to chase various specialists instead of being taken care of by a team of professionals, to have to wait long to have tests and check-ups paid for by the National Health Service or have to pay out of pocket to get them in the right time. And then, you have to deal with bureaucracy to obtain home care, recognition of civil disability and Law 104, prostheses, orthotics and aids. the obstacle course described in the report In the labyrinth of care by Cittadinanzattiva, presented at the Ministry of Health, which arose from interviews with 97 associations belonging to the CnAMC – National coordination of the associations of chronic and rare patients of Cittadinanzattiva, with over 3,500 patients and almost 200 family members who assist them.
An army of sick people
It is estimated that in our country there are approximately 22 million people with chronic disease, of which approximately 8.8 million have a severe form. Added to them are approximately 2 million people who have been diagnosed with a rare disease. There are over 8 million caregivers who assist them (family members in most cases).
Diagnosis, reasons for the delay
The difficulties for a person with a chronic or rare disease begin with the diagnosis, report the associations of chronic and rare patients who join the Cnamc. In approximately two out of three cases, the long time it takes to be certain of the disease you are suffering from is due to the family doctor or pediatrician’s lack of knowledge of the pathology and the underestimation of the symptoms; over 20 percent attribute the delays to too long waiting lists to access visits and diagnostic tests.
Waiting lists blocked even if the law prohibits it
The labyrinth gets tangled during the treatment process because there is often a lack of overall care of the chronic patient, for example the patient should not worry about booking check-ups but it must be the same structure that books tests, visits and services and guarantees them in times indicated by the doctor. And sick people should be provided with all the health and social services they need. In reality, the associations report, in one case out of four we come across long or even blocked waiting lists prohibited by law (n. 266/2005) and there is no involvement of the patient (and caregiver who assists him) in the treatment plan; in more than six cases out of ten there is poor coordination between primary and specialist care, and then: in 53.6% of cases the absence of continuity of care is reported and in 37% the lack of integration between clinical and social welfare.
Inadequate home care
Things are no better for home care: in almost half of the cases it is difficult to activate it and then the number of days or hours of assistance is inadequate. And, if there is a lack of funds or staff, home care is suspended (around 24% report this).
Outpatient rehabilitation in the Lea but you pay for it
Furthermore: for those who need outpatient rehabilitation (three out of four patients in the reference sample), in one case out of two the number of cycles guaranteed by the National Health Service is insufficient; but there is also a good part of the sample (36.3%) who reports the failure to provide rehabilitation by the Health Service, despite it falling within the essential levels of assistance.
The 104th invalid
It’s not over: obstacles are also encountered for the recognition of civil invalidity and handicap (law 104). The most reported problems are: underestimation of the pathology by the doctors of the medical commission; excessively long times for the assessment visit; extreme variability of evaluation for the same pathology.
Waiting lists (and priority codes not respected)
Then there is the problem of waiting lists and costs to be borne by oneself for treatment: these are certainly the elements reported as problematic at a national level, even if the social and economic inequalities of citizens have a significant impact on the burden that they themselves have with respect to access to care. As for the waits, they are reported by the majority of patients with chronic and rare diseases, especially when booking first specialist visits and tests, despite the National Plan Government Waiting Lists 2019-2021 establishes compliance with the priorities indicated with the code on the Health Service prescription: U – Urgent (to be guaranteed within 72 hours); B – Short (within 10 days), D – Deferrable (visits within 30 days, exams within 60 days); P – Programmable (within 120 days).
Furthermore: long waits for check-ups and follow-ups are reported, even though the National Plan establishes that the facility must book the checks based on the specialist’s instructions.
Private expenses for treatment
Due to long waiting times and the lack of coverage by the National Health Service of some services, they are forced to bear private expenses, especially for specialist visits carried out privately or intramurally (67.8% of those interviewed declared this), for the purchase of parapharmaceuticals (for example food supplements, dermocosmetics, ointments); for diagnostic tests carried out privately or intramurally; for the so-called tertiary prevention (diet, physical activity, devices); for the purchase of necessary medicines not reimbursed by the NHS (44.6% say so).
The loneliness of families
To date, the Report points out, in Italy there is no legislative recognition that identifies protections and benefits dedicated to those who take care of a family member on a full-time or non-full-time basis; only three regions have launched structured regional measures of various kinds (Emilia Romagna, Lazio, Lombardy.
While waiting for a national law that recognizes this figure, guaranteeing rights and resources, Cittadinanzattiva conducted a survey from June to October 2023, collecting 170 stories representative of the approximately 8.5 million caregivers.
Well, in 7 cases out of 10 they are women, aged between 51 and 65.
57% work and, in 80% of cases, take care of a parent.
Again: 56.5% had to abandon their studies or work: an almost obvious consequence if you consider that more than two out of three (34.7%) dedicate over 20 hours to caring for a family member.
The areas in which they encounter greatest difficulties in assisting family members are the care of the emotional sphere, the management of bureaucratic, administrative and financial aspects. For full protection of their rights, 61.2% believe it is necessary to recognize the figure of the caregiver, 40.6% consider the support of expert operators to help with care work and 40% ask for psychological support.
Patients with the same disease but treated differently
The different or lack of application in the territories of the National Chronicity Plan, on the one hand, and of the various Diagnostic Therapeutic Care Pathways (PDTA) are the areas, from a regulatory point of view, in which the greatest inequalities are recorded in the territories. Tiziana Nicoletti, head of the Coordination of the associations of chronic and rare disease patients, comments: The promotion of citizens’ health and the overcoming of socio-health inequalities are only possible through the updating of the Essential Levels of Assistance introduced in 2017 and never entered into force. While waiting to verify the implementation of the “Tariff Decree”, some services – such as extended neonatal screening for the diagnosis of other genetic diseases such as SMA, diagnostic tests for celiac disease, diagnosis and treatment services for fibromyalgia as well as for Sjogren’s Syndrome – have not yet entered the Lea and consequently are provided only in some regions, or in some territories or local health authorities, therefore access to care by citizens is not uniform.
Proposals to improve assistance
Among the proposals put forward by the associations to improve the care and quality of life of chronic and rare patients: periodically and frequently updating, financing and monitoring the Essential Levels of Assistance (LEA) throughout the territory; provide systematic and periodic checks on the recovery of waiting lists, making information on the organizational models applied, timing and priority criteria transparent; identify and implement ways to address the shortage of healthcare personnel and ensure that they are increasingly ready to provide adequate responses to the community; update the National Chronicity Plan and monitor the achievement of the expected objectives.
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December 19, 2023 (changed December 19, 2023 | 11:24)
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