“The commitment and participation of users must be reaffirmed in all their dimensions. » This recommendation from the High Authority for Health published in December 2023 painfully shows that twenty years after the promulgation of the law relating to democracy in health, things have changed too little.
Patients, who are primarily affected by care, remain on the sidelines: doctors are cruelly short of time, hospital administrative structures are crumbling under the cumbersome procedures imposed by law, and associations do not recognize themselves. France Assos Santé worked for the representation of patients in our health system and coordinated the actions of associations serving the general interest. Unfortunately, it remains the case that associative structures are still poorly integrated into medical pathways and bodies.
Their legitimacy remains debated, their notoriety is still lacking; a fortiori for small associations, which represent patients suffering from rare or little-known diseases, and which have too little space in hospital organizations, due to lack of authorization or sufficient means (time, financing ). However, it must be remembered that many of these small associations, which do remarkable work on a daily basis in terms of information, awareness, listening and support for patients and their caregivers, only function thanks to the dedication of their volunteers. .
Health authorities
The dialogue enshrined in the law is as essential for improving therapeutic compliance and the well-being of patients as it can be for improving the quality of care, the quality of life at work of caregivers and even the enrichment of medical knowledge through feedback.
In a bloodless health system, where the working conditions of caregivers have become difficult, limiting the expression of patients’ voices to certain pathologies, due to lack of time and resources, is taking the risk of delaying progress. medical conditions and degrade the quality of care. It is urgent to finally organize a framework favorable to the expression of patients from small associative structures and to unrepresented patients, and to give them the means and knowledge necessary for dialogue with health authorities in hospitals as well as in community medicine. city.
These two objectives first require us to think together, health authorities, patients, caregivers, health professionals, about clarifying the different roles of patients, drawing inspiration from the Montreal model, with recognition of their status.
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