09:00, January 16, 2022
“I can’t sleep anymore, blows Robert. If I didn’t reason with myself, I would call the service secretary three times a day to be sure that she didn’t forget my daughter.” The latter, aged 17, has been waiting since January 3 for a place to be hospitalized in neurology in a Parisian university hospital. “In order not to miss his call, I became like those teenagers who don’t let go of their cell phone,” he continues, trying to hide his anxiety with a joke. Her daughter has to undergo a series of tests to understand the cause of an involuntary twitching movement of the neck, daily migraines and a loss of 8 kilos in three months. The neurologist did not hide her concern and raised the hypothesis of an autoimmune disease or a deep cancerous lesion, in the lung or ovary, to be detected as quickly as possible. “But an entire floor of the service is requisitioned for the patients of the Covid-19
, so they are waiting for a bed to become available to hospitalize my daughter as soon as possible”, explains this distraught father.
Throughout the territory, the white plans force health establishments to postpone operations or examinations that are theoretically not urgent but which in reality are sometimes, even often. And the abstract notions of “deprogramming” or “loss of chance” poorly express the disarray that is affecting the thousands of collateral and invisible victims of the health crisis.
Patients “de facto self-confined”
Waiting and watching her phone is also the lot of Gabriela, whose breast operation for an infection in mid-December was postponed before being canceled last week with no new date scheduled. Even if this 40-year-old Ile-de-France has no short-term concerns for her health, she suffers from constant breast pain and tells of a life on hold. To remain almost confined to avoid being contaminated in case access to the operating theater is possible at the last minute. She even ended up giving up the new position she was to join tomorrow. “Which employer would keep someone on sick leave for a week from the trial period? asks Gabriela. It drives me crazy, all these people who minimize the dangers of this virus and talk nonsense regarding the effects of the vaccine… I don’t even count the relatives I got angry with!”
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Different story, but same anger. Nathalie fell before the holidays and suffered a vertebral fracture. The treatment is cementoplasty, a surgical operation under general anesthesia. “‘Impossible for the moment’, my doctor told me, laments the 50-year-old. So I’m in pain and I’m wearing a corset while waiting. And yet, I have ankylosing spondylitis, it’s a chronic inflammatory rheumatism, so we know that my vertebra will consolidate badly and that I will certainly have painful following-effects which might have been avoided by operating on me right away.”
The treatment of her chronic disease causes immunosuppression which makes Nathalie a patient who is also very vulnerable to severe forms of Covid-19. “Laboratories, pharmacies and medical offices are permanently full of potentially infected people, including children without masks, she laments. Nothing has been thought of so that we, the fragile patients, can continue to access to the care, examinations and tests we need without putting ourselves in danger. We therefore live recluse in general indifference.”
“I am self-confined in fact”, summarizes Laurent, renal failure awaiting a transplant. This 50-year-old from Niort hardly ever leaves his home except to go to his dialysis center three half-days a week. A place where, even more than elsewhere, the current health situation is at the heart of all discussions. “We are all chronically ill so for us there is no debate, the non-vaccinated must be treated like the others, assures Laurent. But there is still anger and incomprehension in the face of this irresponsible behavior that penalizes transplants. Knowing that organs from deceased donors are lost due to lack of access to blocks or resuscitation, it is very difficult to accept when your life is on borrowed time waiting for a transplant.”
What will be the consequences of all the delayed operations, transplants and screenings?
Transplants of organs from deceased donors are by nature urgent, unscheduled and priority operations. But the Biomedicine Agency however mentioned on Wednesday “a significant drop in transplant activity since the beginning of January and very great vigilance on the situation in Paca, Martinique and Guadeloupe which affects the activities of organ harvesting”.
Beyond the degraded quality of life of these “deprogrammed” patients, what will be the consequences of all the delayed operations, transplants and screenings? “The problem faced by decision-makers is that the loss of chance has a delayed effect. We will only be able to quantify in one to two years the complications and deaths caused by the current situation, and these decisions on the rate of deprogramming fixed without consultation with the medical profession”, regrets the gastroenterologist Patrick Gasser, president of the union Avenir Spé.
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The effects of the first waves of Covid-19 are beginning to appear; tumors identified at an early stage and finally operated on when they have become invasive and chemotherapy is necessary with its share of side effects, diabetic patients with foot wounds so aggravated that it is necessary to amputate, elderly people who have waited so long for their hip or knee prosthesis that they have irretrievably lost their ability to walk and their autonomy…
So many situations where deprogramming, delays in care and renunciation of care by patients concerned regarding the circulation of the virus in health establishments and the saturation of hospital capacities are intertwined. These “voluntary deprogrammed” are another major concern of caregivers, who all recall that not consulting for fear of contamination would be the worst option.