Seven out of ten citizens do not know the law 38 of 2010 and the rights that it establishes to avoid the patient "unnecessary suffering". Ten years after the passing of the law, Cittadinanzattiva shows how much citizens are informed about it through the data emerging from a Civic Survey, presented today during a web meeting, as part of the information campaign "We are not born to suffer", carried out with the unconditional support of Pfizer.
The campaign provides the citizens with a leaflet (available at this link) with the main information on the possibilities provided by the law.
"In these ten years many steps forward have been made, but much remains to be done for the full implementation of the right to avoid "unnecessary suffering"; in fact, despite the regulatory framework defined by Law 38/10 and the subsequent provisions in the State-Regions Conference, as well as some rulings of the Constitutional Court and the Supreme Court, this right is not yet guaranteed, also because it is little known, as shown by the data of our survey. The enforceability of this disregarded right becomes even more central in times of health emergency: we need palliative care and relief of chronic pain, even "at a distance" and with technologies and modalities compatible with the situation, but equally effective," says Francesca Moccia, Deputy Secretary General of Cittadinanzattiva.
The online questionnaire to which 1028 citizens answered, between May and September 2020, was carried out in collaboration with: Associazione AISD - Associazione AISF - Associazione AISLA - Associazione AMICI Italia - Associazione ANMAR Italia - Associazione Antea - Associazione APE - Associazione CFS ME –Palliative Care Federation Onlus - Federdolore SICD - FEDERFARMA - FIMMG - FIMP - FNOMCeO - FNOPI - ISAL Foundation Pain Research - Maruzza Lefebvre D'Ovid Foundation - LILT - SIAARTI - SIF - SIMG - SIOT - SIP - Italian Society of Palliative Care - UILDM. The survey is available here.
39% of the citizens who responded to the survey have a pathology that causes pain and more than 80% declare that it is chronic, i.e. continuous and/or recurrent pain that prevents them from carrying out their daily activities normally. Moreover, only 27% of these citizens received information about their rights in terms of pain therapy and unnecessary suffering.
Only 28% declare that they know the law 38 and the rights it provides. Here are in detail the areas and rights of which citizens seem to be better informed and those about which there is a lack of information that should be filled in order to make this law effective and enforceable.
HOW MUCH CITIZENS KNOW ABOUT IT:
Just under three out of four citizens know that the law provides for the right to measure pain, regardless of the patient's age and condition; just over half are aware that pain must be remeasured after treatment to assess whether it has had an effect; one out of three is aware of the appropriate instruments to detect pain.
Only 39% know that the law 38 also deals with palliative care and of these less than half are aware that such care is completely free and that it is aimed not only at those suffering from cancer but also other diseases such as dementia, Parkinson's disease, ALS, chronic respiratory diseases.
Facilities for the "treatment" of pain
70% know that there are specialized centers for the treatment of pain; a little more (72%) know about hospices.
63% are aware that palliative care can be organized at the patient's home, in clinics, in hospitals, in facilities for the elderly (Residential Care Homes) and disabled (Health Residences for Disabled People) and mainly in hospices, as well as 51% know that to access palliative care you need a request from the general practitioner/pediatrician of free choice or specialist doctor, after a joint evaluation between the health professionals involved and 47% know that you are entitled not only to health and pharmaceutical care but also to apsychological and social support for the patient and his family.
One out of two states that there is a lack of information on these rights from the health professionals closest to the citizens, such as general practitioners and pediatricians of free choice.
91% declare to be aware of the existence of specific medicines against pain but about 45% do not know that Law 38/2010 provides for the possibility for the doctor to prescribe on the NHS prescription (former red prescription) the medicines used in pain therapies (eg: opiate medicines), as is the case for any other type of medicine.
40% do not know that opiate medicines are safe and highly effective in most persistent painful diseases without making patients dependent or forcing them to use them over time.
In order to overcome the current critical issues and take steps forward to effectively ensure the protection of the rights guaranteed by law 38, Cittadinanzattiva calls for the need to:
-standardize in the different territories - in terms of offer, but also in terms of characteristics and types - local networks for palliative care and models of care for patients with pain;
-integrate all the skills in the care process, including those always lacking in relation to the needs expressed by people and families (psychological and rehabilitative);
-make more homogeneous the training offer for health care professionals in palliative care, both in relation to university education and to the achievement of credits in Continuing Medical Education (CME);
-increase the number of beds but also make active the peripheral network of pediatric palliative care and pain therapy, strongly lacking in almost all the national territory;
-periodically promote information campaigns on the law 38 addressed both to health care operators and professionals, starting from general practitioners, and to citizens.
(documenttranslated by Maira Cardillo, Active Citizenship Network staff)