«When she was a child, it was simpler. » Emmanuelle could still carry Maëlle, her multi-handicapped daughter, to access medical offices without an elevator or seat her on the auscultation table. «Today, she is 26, I can’t do it anymore.” she regrets. Since then, obstacles have piled up to get the young woman treated, who needs constant assistance to eat, move around and wash.
With each new consultation, the same problem arises. Since Emmanuelle cannot carry her daughter without a lift, Maëlle ends up being examined in her wheelchair. «Even with someone’s help, we risk hurting her or, worse, making her fall.», fears his mother. Due to a lack of suitable equipment in most city practices, she often ends up turning to the hospital, far from her home. “It complicates everything”she whispers.
Emmanuelle also had to face the indelicacy and even cruelty of certain doctors. «What do you want me to do with this? »an ophthalmologist asked him one day. Éric, father of Alice, a 36-year-old adult with multiple disabilities, also suffered from this rejection. «A brand new radiology practice had just opened near us. I wanted to make an appointment for my daughter but when I told them she was disabled, they refused to take her,” he remembers.
A case far from isolated. Between the beginning of July and the end of September 2024, 15% of respondents to the Handifaction barometer, supported by health insurance, experienced a refusal of care. Among them, 30% ended up giving up treatment (see benchmarks).
Adapted centers
Faced with these difficulties, fatigue sets in among patients and caregivers. «A single consultation can take me a day,” says Emmanuelle, who takes care of her children alone. But appointments are piling up: rehabilitation, speech therapist, physiotherapist, occupational therapist…
To lighten their daily lives, Éric and his wife Florence chose to leave the Arcachon basin to move to the Bordeaux metropolis. Objective: to get closer to the specialized health center where their daughter Alice is taken care of. The “Handiconsult” system, developed by the General Directorate for Healthcare Supply (DGOS), helps with the deployment in the Paris region and throughout France of this type of structure, hosted by hospitals or medico-social establishments.
The first center in Île-de-France opened in 2018, with the help of the Regional Health Agency (ARS), in Neuilly-sur-Marne (Seine-Saint-Denis). Here, everything is adapted for people with disabilities, from the equipment to the training of professionals. At the same place of care, patients can consult a general practitioner, specialists and have examinations. Mammograms, MRIs, chairs and auscultation tables are wheelchair accessible. Professionals can accommodate patients who are unable to speak or have behavioral problems. “They will then be able to decode through a clinical examination the signs and symptoms of a gastric problem or dental pain, for example”explains Doctor Catherine Rey-Quinio, medical advisor on disability policy at the ARS of Île-de-France.
This awareness of disability facilitates diagnoses and limits the risk of errors. Because Alice systematically contracted her legs when her feet touched the ground, her rehabilitation doctor diagnosed her with spasticity, a neurological disorder causing involuntary muscle contractions. Wrongly. “My daughter simply has hypersensitivity in her feet, explains Eric. If I hadn’t challenged the diagnosis, she would have had the operation for nothing. »
But the model proposed by Handiconsult does not resolve the basic problem according to Doctor Catherine Rey-Quinio. “People with disabilities must be able to be welcomed like everyone else in hospitals and in the city,” she believes. And to achieve this, beyond the physical accessibility of places of care, better training of health professionals in disability issues is necessary.
“White” consultations
Some have already adapted. Thus, the dentist that Emmanuelle found for Maëlle agrees to do “white” consultations during which he introduces her to the office, familiarizes her with the noises and the equipment. The patient may return several times until he or she is ready to be examined. As for the consultation, it is reimbursed by health insurance, the origin of this initiative which should soon be extended to other specialties. Maëlle’s consultation went well. “The dentist spoke to her to reassure her, whereas usually professionals speak to me,” Emmanuelle almost wonders.
To facilitate communication with these patients, the Coactis santé association has developed educational comic strips, “SantéBD”. Drawings in “falc” (for “easy to read and understand”, a method for translating classic language into simplified language) are made by experts in the sector to explain medical procedures. Blood test, ENT or MRI consultation, each procedure is detailed and illustrated. Professionals and caregivers can use them to explain to patients the progress of the consultation and avoid misunderstandings.
“It’s important to be able to provide information in advance to avoid trauma,” explains Anne-Charlotte Dambre, co-general delegate of Coactis santé, which also provides doctors with “handiconnect” advice sheets. ». Health professionals can find the recommendations of the High Authority of Health on the management of certain disabilities. In 2023, 50,000 healthcare professionals will use it.
Prevention in gynecology
Particularly useful advice when it comes to addressing the emotional and sexual lives of patients. For her gynecology consultations, Aurélie, midwife, also relies on Coactis Santé comics. Painful periods, sexual intercourse, itching, she reviews all the subjects. It’s a way «to open the floor”, including the sexual violence they may have suffered, she emphasizes. A major issue: according to a study conducted by Ifop for the Association for the Social and Professional Integration of Disabled People (Ladapt), 16% of disabled women report having been raped.
Aurélie carries out this prevention and support work as part of the Handigynéco system, developed by ARS Île-de-France since 2017 in order to address the poor gynecological care provided to women with disabilities. According to the High Authority for Health, one in three is not screened for cervical cancer.
For the APF France Handicap, which has been alerting public authorities for years, it is urgent to review doctors’ education programs. “ Some universities already include seminars on disability and offer internships within medico-social establishments, but these initiatives should be standardized across the rest of the country.says Karine Pouchain-Grépinet, national health and medico-social advisor of the association.
Despite everything, Éric and Florence have seen progress in recent years. “The younger generation of doctors is looking more to interact with our daughter”assures Eric. “Concrete measures are emergingconfirms Karine Pouchain-Grépinet, but what is needed is to improve accessibility in the broad sense of our society. »
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12 million people affected by disability
According to INSEE, in France, 3.1 million people will have administrative recognition of disability in 2023, or 7.5% of the population.
However, the number of people affected by a disability, whether physical or mental, is estimated at 12 million (18% of the population)
The 2005 law on “equal rights and opportunities, participation and citizenship of people with disabilities” requires accessibility for all, particularly to care and prevention. In reality, this is not always the case, as shown by the Handifaction barometer published in 2024 by Health Insurance.
– Among those surveyed, 25% say they were unable to access the care they needed.
– 15% were refused treatment, which, in 30% of cases, pushed them to give up.
– 12% saw their companion refused by the caregiver.
– 58% were unable to seek treatment when they did not have a treating doctor.