Deputy Director of the Children’s hospice “House of a lighthouse” the lead of Maniava tells three stories of patients and their loved ones who knowingly violate the law. Because the pain and fear is stronger than just fear, even before the law.
- Terminally ill child should have the right to be born and the right to die next to her mother
- The Lida Moniava: “If Katya planted, Arseniy gets to the boarding school for disabled people, where very quickly you will die”
- The mother of a disabled child: “I was asked how old I kolyus”
- Hunting for mom
- “Forbid to hurt!” – The address of Nuty Federmesser to Russian President Vladimir Putin
The story of the first. As Galya was hiding fentanly patch from new York in a Moscow hospital
Galya was one of the stages of cancer treatment in the United States, in new York. Returned to Moscow in a wheelchair, on potent painkillers – ventanilla the patch. In America, Gale was given a supply of pain patches to 1 month in advance.
These plasters, in principle, is in Russia. Recipe they were ready to write the district oncologist in the clinic, and to give – at the pharmacy’s place of residence. But this Gal was supposed to be at home, and Galya went to the hospital. In the hospital fentanly patches were not, there is not often appear patients with pain syndrome.
There were ampoules of morphine and tramal – a few vials a day for the entire hospital. This is not enough.
Lying in a Moscow hospital, She secretly stuck on the forearm of the American fentanly plaster and hid the packaging in the things that nobody found. When the pain intensified, the patches had to glue 2 pieces, the stock quickly began to come to an end. Galina friends, returning from vacations and business trips from the U.S. to Moscow, were resupplied fentanly patches. Each of them could receive from 4 to 8 years sentence for illegal possession and sale of narcotic drugs.
History of the second. As Leshin dad called to the Ministry of health and that he was told
Alex 9 years old, during the birth something went wrong, asphyxia, part of the brain cells have died since then, Alex suffers from seizures. The first 2 years of his life he spent in hospitals.
The doctors tried to find treatment. Every day Alesha from 100 to 300 attacks. Alex advised 8 neurologists and have tried 10 drugs, and seizures as it was, and continued.
Colleagues, parents raised money and sent Alex’s mom in France, to the eminent Professor who deals with the treatment of epilepsy. The Professor recommended that Lesha drugs “Sabril” or “Frisian”, and if the seizures cannot remove more than 5 minutes to inject the drug “Diazepam” rectal. Tried – works. Cramps are not gone completely, but they became much smaller, short 5-20 seizures a day to 1-2 a long bout in a week, which is 20 times better than it was. Mother Alesha bought in Paris stock “Sabrina”, “Frisium” and enema “Diazepam”.
All went well until, while drugs did not end. Relatives joined and started the search for the pharmacies, but it turned out that all three drugs are not registered in Russia. Dad called to the Ministry of health with the question of what to do. The health Ministry said that to import is not registered in Russia drug, you must obtain permission of the Ministry of health. For this we need to provide the conclusion of the clinic, which treated the child, that shows the drug; a statement of permission and a copy of the birth certificate of the child.
The parents went to all the hospitals where lay or consulted Alex, with a request to give an opinion for the Ministry of health on “Sabriel”, “Frisian” and microclysters “Diazepam”. At the words “Ministry of health”, “sabriel”, “Frisian” and “diazepam”, even friendly doctors quickly replied that it was absolutely impossible, they get fired, they will have problems, write such a conclusion impossible.
Reached the administration of one of the clinics – the Deputy chief physician explained that since drugs recommended by a doctor from France, their clinic does not have the right to give opinions on these drugs. Alesha’s parents tried to explain to the chief doctor that the only “Sabril” Alesha decreased cramps, and may be a neurologist in the hospital, given this fact, can assign to Lesha “Sabril”? The chief medical officer said that “Sabriel” is not registered in Russia, as their neurologist can prescribe?
The situation seemed hopeless. But colleagues of parents said cheerfully into the phone that there are no hopeless situations – and found a surprise from Paris to Moscow.
The man, whose suitcase had 3 packages “Sabrina”, “Frisium” and “Diazepam”, could go to jail from 4 to 8 years, if at customs he was asked to skip the Luggage through the tape.
Fortunately, all went well, and at customs, a suitcase with drugs is not interested. But Alesha’s parents when he realized in what situation could get responded to their request for help people, I decided never to ask for such assistance, and if to risk it themselves.
The first 2 years, every 4 months they were flying to France for drugs themselves. Then on the forum for parents of children with disabilities learned that almost all parents of children with epilepsy are faced with this problem, and is not registered in the Russian Federation medicine of epilepsy can you buy on the Internet forums have dealers or parents whose children have changed therapy. Since then, for 4 years every 3-4 months Alesha’s parents buy “Sabril”, “Frisian” and microclysters “Diazepam” in the Internet.
Now it’s time to buy medicines, but after the sensational case of Catherine Connoway, mother of terminally ill child, which at the time of sale 5 mikroklizm almost got put in jail, make it very scary. But if not, Alesha again will be instead of 10 – 200 seizures a day. And it’s much worse than breaking the law.
The third story. As the German doctors gave the girl Sonya the stock of morphine, which was enough for two
Sonya 4 years, she was treated in Germany from a brain tumor. In Moscow, too, could obtain this treatment, but a quota and a waiting date of hospitalization take up too much precious time. However, in Germany, too anything could not do. The treatment did not help, she goes home.
Sony is in pain, she takes daily morphine syrup. To plan the return home, the parents call to Moscow to the district hospital. It turns out that morphine syrup is not registered in Russia. There are morphine tablets and capsules, but Sonia can’t swallow. There is a liquid morphine, but Sonia is afraid of injections. Doctors in a German clinic agreed to give morphine for Sony stock 2 months in advance.
Mother of Sonia and 2 bags of morphine in the syrup back in Moscow. The plane landed, in front of a green corridor of customs, and my mother suddenly ran cold inside – what if now the customs will be asked to open the suitcase and find medicines?
Morphine can withdraw at customs, and Sonia will be without anesthesia. The mother can be prosecuted for illegal trafficking of narcotic drug, and Sonya will be left without a mother.
Customs did not pay attention to Sonia, and their mother and suitcases, and the family safely, if you can call the situation back home.
After 1 month and 3 day Sonja died. Quietly, quietly, at home, in the dream, there was mom, dad and older sister. Sonya’s began to disassemble things. The clothes given to friends, where a baby grows Soninho age. The remaining after treatment in Germany, the catheters and probes was attached to the hospice. In the corner of the room left standing, one of the two suitcases with morphine in syrup. He did not come in handy.
What to do with the morphine? Hospices, clinics and charities are not taken – fear. Throw away the morphine in the trash? I can’t bring myself to do it, the last months of life this medicine was a real jewel, every day she counted the remaining bottles, wondering how they have enough and every day more and more afraid of what to do when the morphine in syrup will end? Yes scary to just throw away – suddenly they are teenagers interested in sealed packs of syrup and God forbid someone tries to drink? Overdose of morphine leading to respiratory failure.
One evening, Sonia’s mom was reading fabsec and have come across group of girls with the same diagnosis as the Sony. The same age as Sonia and got sick about the same time a year ago. The girl hails from Dagestan, relatives collected the money and sent them with mom for treatment in Moscow. They went through the same treatment – radiation, chemo. I live in Moscow in a rented apartment near the hospital, the mother leads the group on Facebook and tells how goes the treatment.
In recent weeks, the girl began pain, the mother writes that she constantly whimpers, holding his hand over his head, refuses to eat and from cartoons, complains. In the hospital is recommended to give her Nurofen. Nurofen doesn’t help. Several times mother called an ambulance, the ambulance arrives, does an injection tramal, the girl can sleep, but the injection lasts for 4 hours, then starts all over again. Sonia’s mom wrote her a personal message that she was the same child with the same diagnosis, the doctors prescribed morphine syrup, but Sonia died, they remained unused vials of morphine, maybe they will be useful to this family?
Mum responded immediately – ready to drive anywhere right now, because look how tormented her little girl, no longer can. We agreed to meet at 10pm on the ring branch of the subway in the center of the room. Sonia’s mom arrived early at 9.45. In the center of the room stood several women. Maybe one of them is the girl’s mother? And if not?
Suddenly Sonia’s mom saw 2 cops with a dog.
Inside, again, everything went cold, as then at the airport when he and Sonia walked down the green corridor. What if the dog now smell the morphine in her bag? There are in fact a single bottle opened, it was opened a few hours before Soninoy death, and a little of the syrup from running out.
Shepherd certainly feel.
What to tell the police why she had a bag full of drugs? If you tell it as it is – can be a problem at mom’s this poor girl, the police begin to ask the documents registration and the precinct is likely to take both of them. You should have told her husband where she’s going. Or don’t, it would now be very worried. I had my oldest daughter before going to sleep kiss. Now it is unclear when will I see you again.
I wonder how many give for illegal possession and distribution of narcotic drugs? 5, 10 years? On TV not so long ago was a story about the trial of the doctor from Krasnoyarsk, which was accused of illegal possession and sale of hard drugs, remember how she wanted to give?..
At this point the mother Sonia called out to the girl 20 years for other species, like a schoolgirl, eyes tear-stained. Sonia’s mom knew immediately that it was the mother of that girl. The police stood back on them. But the dog was looking right at them. Sonia’s mom quickly handed a bag of drugs and said goodbye. The dog continued to sit in silence. Tired cops on something laughed. Seem to have passed.
Girl from Dagestan died in 2 weeks. The German morphine she was given every day, it really helped. Last 2 weeks less she whined, again became interested in toys. Parents even started to think that maybe it’s not as bad as the doctors say, because she really was the best.
The girl died in the morning, the parents called the ambulance, the doctors pronounced him dead, then to the apartment came a crowd of men in uniform, police, investigators. They asked for the documents, photographed the room described the whole situation around the child, asking my mom questions – the grounds on which they are in this apartment, in what clinic it was treated, what school enrolled other children in the family and in what study class what drugs the mother gave the child, who appointed these medicines, who, and how was it obtained? Mom holding onto the heel of his dead girl, trying to answer all the questions, but the names and dates confused in my head.
About the morphine, she said nothing. Unused vials the next day thrown in the garbage disposal. 2 criminal cases on happy – again, if I may say so – the circumstances under article 228 for illegal possession and sale of narcotics has not been opened, and two mothers of terminally ill children by accident was not sentenced to a term of from four to eight years.
History … ten-thousand. Because tens of thousands of people live in the country “under the article”
A few days ago Nuta Federmesser, head of the palliative care Center of Moscow and the founder of the hospice charity Fund “Vera”, has released a video message in which she says she could be convicted under article 228.2. To be honest, most parents of terminally ill children, relatives of terminally ill adult relatives of patients with epilepsy and other orphan (rare) diseases, their colleagues, friends and volunteers who try to help them and bring, store and transmit potent drugs, and tens of thousands of people can sit down tomorrow in jail.
The country’s lack of preparations for palliative care and treatment of epilepsy – pushes a huge number of people breaking the law and keeps us all in fear.
It is impossible to forbid doctors to try to alleviate the suffering of their patients. You cannot prevent parents of seriously ill children to help each other, is brought from abroad and sharing illegal drugs. But to open every time criminal proceedings against parents and doctors is impossible.
It is necessary to register the products. It is necessary to solve the problem. We need to stop holding thousands of people in fear. The tension in the society about this now will only increase until the problem is resolved.
P. S. the Names and other personal data in text changed. Because it’s scary.