20-year-old Vadim Yurkin is a disabled child of the II group, he has progressive myopathy - muscular dystrophy.
“I am a palliative patient, but apart from this status I receive nothing. A therapist and a nurse come to me, but their examination consists in measuring blood pressure and listening to my complaints, - Vadim writes on his page in social networks. - Two weeks ago, a neurologist prescribed drugs that are not included in the list of free drugs. Nothing intelligible was said about the pain reliever. All doctors refer to the fact that I have a rare genetic disease. And they don't know what to do with me."
According to Vadim, he offered to contact Moscow specialists for consultation, but he was refused.
“How can I live in a city where the palliative patient does not live, but survives? - says the young man. - I was repeatedly told that I already had a survival period. Is this a normal attitude towards patients like me? Believe me, I also want to live."
"Kursk region was one of the first in the country to start creating a palliative care system." This is a quote from the release of the regional health committee. According to official reports, there are 1,740 patients living in the region who need palliative care, and it is provided free of charge. In 2019, 53 million rubles were allocated from the federal and regional budgets for these purposes.
109 children receive palliative care. By 2024, it is planned to complete the construction of a multidisciplinary children's hospital, where a six-bed department for palliative children will open.
“40 children are in Kursk, 22 in Zheleznogorsk,” says Igor Zorya, chief physician of the regional children's hospital. “The maximum task now is to establish the provision of palliative care at home, for this we have all the necessary equipment - two ventilators, 12 coughs and so on.”
The palliative care team visits sick children once a month. The field service includes doctors, nurses, psychologists, and social workers. And this is the minimum set of the team. If necessary, doctors of narrow specialization come. From the official report: “… doctors examine the child, prescribe symptomatic therapy, if necessary, take tests, talk with the parents. If a child is on a ventilator, doctors not only assess the child's condition, but also check the operation of the equipment."
The parents' opinion differs significantly from the official one. This, one might say, is not an opinion - a cry or even a scream from misunderstanding and despair. So, Baryshev Zhora from Kurchatov suffers from frequent convulsions, and he does not leave his mother's hands. There is no treatment for the child - the neurologist cannot prescribe anticonvulsants, since there is no pediatric neurologist in Kurchatov, and Zhora is simply not observed.
Duyunov Nikita can breathe only a quarter of his lungs. At 15, the boy weighs 22 kg. He needs a cough, but the request is pending and the date of the decision is not clear. Meanwhile, the boy gets worse day by day.
Timofey from Zheleznogorsk has a broken ventilator. The boy's mother wrote a request to the health committee more than a week ago. No answer. The system is slow and clumsy.
If you carefully study the reports, the conclusion that it is not getting better will come naturally. 2016 - 269 beds for terminally ill patients, 2017 - 249, 2018 - the same 249. There is no data on the training of specialists in the provision of palliative care. Who teaches them, where and according to what programs?
“Today, care for seriously ill patients can be considered a“weak point,”says Igor Kiselyov, chief physician of the oncological hospital.
In 2019 alone, doctors were able to calculate the number of children in need of palliative care - 114, before that the report featured a figure of about 100.