experts to guide the sick and support caregivers

In her small house in the edges of Marne, Colette, 65, former adviser in social and family economy, is prepared carefully before her visit in a large Parisian hospital center. Not that this sixty -something man is sick. But it was. His visits to the hospital are now no longer an exam or a control of his cancer.

On this winter morning, it brings together some papers to go talk about its old pathology, its daily effects and its heavy constraints, to a group of new patients. However, Colette is neither a doctor nor nurse. For six years, she has been a “patient partner”.

“They transform the experience of the disease into expertise”

Colette and her peers constitute a species a little apart in the French care system: one foot with the patients, one foot in caregivers. Former patients, they developed a fine knowledge of their pathology, often heavy, often chronic. After training, they provide listening and support in hospital services or associations. “They transform the experience of the disease into expertise,” summarizes Olivia Gross, holder of the “Patient commitment” research chair at Sorbonne Paris-Nord University.

They gradually won a real place, which is no longer anecdotal. “It all started about thirty years ago with people with AIDS who knew as much, or even more, as doctors,” recalls Olivia Gross. Subsequently, several legislative texts accompanied their emergence.

The pivot date is the hospital law, patients, health, territory (HPTS) which in 2009 established a specific branch of the care system, the therapeutic education of the patient (FTE), where caregivers associate with patients to make them autonomous in the management and management of their affection.

First called “expert patients”, they are now called “partner patients”, as recommended by a recent report from the Academy of Medicine. No coincidence in this vocabulary change. Valérie Rolland, 54, who has been involved in sarcoidosis for twenty-five years, a rare and very disabling disease, vigorously defends this notion of “partnership”.

“This word defines us wonderfully: I understand the patients because I live the disease in my body, I explain the treatments, I help them ask the right questions to doctors, I translate medical language, often complicated, I do not judge Neither their fears nor their anger, ”she says with her soft voice.

A role of “listening”

Like a friend? Not really. “To listen to people, you must have accepted your illness, and above all have taken a step back from it. Coming to never get overwhelmed by his emotions is essential, “said Tony Verrechia, who devotes all his time to this role of” listening “of a new kind in two hospitals in the Paris region (1).

“They also do what doctors and nurses no longer have time to deal with an explosion in cases of chronic diseases,” said Philippe Raclet, vice-president of the French Federation of Diabetics.

Specific training of 40 hours minimum

To ensure this special place, they undermine specific training of at least forty hours in a university, within an association, or in the hospital. Since 2010 and the creation in Paris of the University of Patients – the pioneer – a dozen higher establishments today offer diploma courses intended and/or open to patients and caregivers.

Because if these singular experts develop real skills on pain, fatigue, taking treatment or side effects, their role is not limited to experience sharing. “They play a key role in the appropriation of the disease, which is fundamental to learning to live with it and gaining real autonomy”, underlines Christelle Blusseau, nurse project manager within the UTEP2 department of the University Hospital Center (CHU) de Poitiers (Vienne).

“Role of smugglers between patients and professionals”

In addition to participating in ETP programs, they also integrate into the construction and very evaluation of the latter. At the Nancy Hospital (Meurthe-et-Moselle), Ghislaine Dugoua-Jacques, 54, suffering from rheumatoid arthritis for twenty years, has created the workshop Live with polyarthritis And manage fatigue. She had identified a specific need on this point. Public policies provide a systematic partnership with health teams for each ETP program by 2028.

“Unlike ours, the knowledge of these patients is built on their own experience,” says Christelle Blusseau. “What allows them to play the role of smugglers between patients and professionals,” summarizes Dr. Xavier de la Tribonnière, head of the UTEP medical team at the CHU de Montpellier (Hérault), who stresses that ” Their contribution in the care process is scientifically proven ”.

However, these employees sometimes remain poorly identified by certain professionals. Perhaps because ETP programs are managed by regional health agencies and some (New Aquitaine, Occitanie, Brittany, etc.) allocate more credits than others.

“I feel useful, and that is priceless”

Especially present in hospitals, these new players are now asked to intervene with medical or pharmacy students, in nursing institutes … An increasing number is even included in clinical research programs. There remains a land to be conquered: health homes, with liberal doctors.

And a question to come back: should we pay them? Only a few volunteer coordinators benefit from a salary in hospitals. For Ghislaine Dugoua-Jacques, integrated into the Nancy team, the question does not arise. “I give the company what it brings me by taking care of my treatments, heavy and expensive. I feel useful, and that is priceless. »»

(1) He is also president of the Coeur Coeurcouler Coeur Association. wixsite.com/asso-coeur-couleur

(2) Transversal unit of therapeutic education of the patient.