Hospital crisis: when patients take action, by Pr Gilles Pialoux

A wind of defense of the hospital by the users themselves is blowing. A wind tinged with anger, but rising like a diesel, slowly. And this in a landscape, that of associations for the chronically ill, unaccustomed to happenings and power struggles with power, as Act Up did in the fight against AIDS. Object of this increase in load: the loss of chance that would inevitably induce the crisis of our health system.

The ActionPatients collective (1), which brings together 32 patient associations, called on patients and caregivers to participate in a survey on care, to document these possible loss of chances on quality of life and/or survival. Losses induced by staff shortages, bed closures and cancellations of care time slots. It is for these associations piloted by Renaloo (kidney failure, transplant or dialysis) to strengthen their advocacy and alert the public authorities. At the same time, six associations of patients and caregivers launched a procedure against the State on Tuesday, October 4 for “wrongful deficiencies”, asking for a “compensation claim” to compensate for these losses of care.

Difficult to measure the consequences of a delayed MRI

The results of the ActionPatients survey are currently being analyzed but the approach is already a success. The number of responses from patients and relatives of expected patients was between 600 and 800 and that of healthcare professionals between 100 and 200. At the time of writing, the MoiPatient platform, which hosts questionnaires drawn up with social sciences collected 1169 responses, including 172 from caregivers. The questions are closed but a space has been opened to collect individual difficulties in the course of care or proposals “to improve the quality of care and/or reform the health system”.

Limited offer. 2 months for 1€ without commitment

However, it remains difficult to quantify the effect in terms of loss of chance of deprogrammed surgery for lack of theater nurses, of an extended MRI delay for lack of radiographers, or of a excessive waiting in the emergency room due to closed beds downstream due to lack of staff. The Collectif Inter Hôpitaux (CIH), associated with ActionPatients, points out that a quarter of neurovascular unit beds (UNV), welcoming patients who have suffered strokes, are currently closed in Ile-de-France (and even 45 % at the AP-HP) due to the lack of nursing staff. These closures of specialized beds have serious consequences for patients because hospitalization in these units remains necessary to reduce the risk of disability and mortality by 25%. Another example: pediatric intensive care units in Ile-de-France are already full for lack of sufficient beds, when bronchiolitis and flu arrive.

Associations tired of unanswered pleas

Concerning the quotas of beds per nurse, a managerial headache in the hospital and a point of tension for the unions of paramedics, the medical literature is abundant to establish a direct link between the lack of nursing staff and excess mortality. Especially in intensive care. In 2016, a European study published by the BMJ Quality and Safety showed that for each replacement of a nurse by a caregiver, the risk of death increased by 21%. Other research by a team from the University of Southampton estimates that 10% of missed care corresponds to a 16% increase in mortality for each patient after an operation.

Patient associations are tired of ministerial letters and unanswered pleas. Tired, and exasperated by the declinist discourse on the public hospital, which does not solve a deeply rooted evil among caregivers: the loss of meaning and the impediment of quality. They now want to know the impact on the quality of care of these bed closures which, according to the Fédération Hospitalière de France (FHF) concern 85% of CHUs.

This investigation should be completed in October, a short period but justified by the urgency, the Minister of Health and Prevention, François Braun having announced in mid-September a “stakeholder conference” for October. Some actors fear yet another consultation, the translations of which on the ground would remain weak in view of the urgency to act. There is, however, an opportunity to make the public debate to come a real opportunity to “refound” the health system, provided that the voice of users is heard. In any case, these associations are determined to “communicate on the loss of chances, the sorting of patients and the mistreatment they suffer in general indifference”.

Pr Gilles Pialoux, infectiologist, head of the infectious and tropical diseases department at Tenon Hospital (AP-HP), president of the French Society for the Fight against AIDS (SFLS) and member of the support committee of ARSLA, an association against Charcot’s disease (www.arsla.org).

*In addition to Renaloo, the partner associations are the Association for the Assistance of Victims of Medication Accidents (Aaavam), Actions Treatments, the Association for the Right to Die with Dignity (ADMD), AFA Crohn-RCH, the Association association of hemophiliacs (AFH), the French association of polyarthritics and chronic inflammatory rheumatism (AFPric), the French-speaking association of Angelman syndrome (Afsa), Helping to help, Heart Alliance, Amadys, the Liver disease association children (AMFE), the National Association for the Defense against Rheumatoid Arthritis (Andar), the Association for Research on Amyotrophic Lateral Sclerosis (ARSLA), Cancer Contribution, Diabetes and Villains, Mutual Aid for Bone Marrow Transplants (Egmos ), Together leukemia lymphomas hope (Ellye), the association for the fight against endometriosis EndoFrance, the Cairo Federation, the French Federation of associations and associations of the sick, insufficient or respiratory disabled (FFAAIR), France gre ffe heart and/or lungs, France Lyme, France Rein, Juris Santé, Laurette Fugain, Les Séropotes, Melanoma France, Patients in the network, Renaloo, Rose Up, Transhépate, Overcoming cystic fibrosis.