Lighthouse House Hospice Faces Closure After Inspection by Ministry of Internal Affairs. Complaints were filed against the head of the foundation for guardianship of a sick child?

The private children’s hospice “House with a Lighthouse” is in danger of being shut down or fined heavily following an unscheduled inspection by the Ministry of Internal Affairs. A case has been opened against the organization for violating the procedure for the distribution of drugs. The police became interested in the “House with a Lighthouse” after a complaint about the care of a boy with an incurable disease, whom the founder of the hospice, Lida Moniava, had taken under guardianship. Discussions about whether she is treating the child correctly have been going on for several months.

Meanwhile, the chairman of the Human Rights Council told the BBC that he did not see a systemic problem in the organization of the billing of strong painkillers.

The head of the charitable foundation and children’s hospice “House with a Lighthouse”, Lida Moniava, reported on Facebook about an unexpected inspection by the Ministry of Interior on Saturday, November 28. According to her, in the morning five employees of the drug control department of the Ministry of Internal Affairs arrived at the hospice without warning. The drug police were interested in the inventory of narcotics used to relieve the pain of seriously ill children. “We checked – recipes and their accounting, counted tablets, ampoules and plasters in the safes, checked all the records in the journals, checked the medical records. All the medications matched. Some entries in the journals did not match,” Moniava wrote on Facebook. The director of the foundation acknowledged “inaccuracies” in the drug accounting journals. The foundation received a license to work with such drugs only a month ago, Moniava reported on Facebook, and this was confirmed by the foundation’s PR director, Sofya Kharkova, according to the BBC. She could not specify exactly what violations the Interior Ministry officials found. “We have indeed made some inaccuracies in these journals. It probably doesn’t make sense to list the specific mistakes in each magazine. We have understood all the shortcomings, have already corrected them, and hopefully we will not make them again,” reads Moniava’s post. She herself did not respond to messages from the BBC.

As a result of the investigation, a case was opened against the Fund under Administrative Article 6.16 of the Code of Administrative Violations (“Violation of the Procedure for Turnover of Narcotic Drugs”). According to this article, the hospice may face a fine of 200,000 to 400,000 rubles or suspension of its activities. The court hearing is scheduled for next week, but the date has not yet been set. “We certainly hope for a fine. We hope it will be less, because we are still a charitable organization. Suspension of activities is our worst nightmare, because 750 children of the foundation may be left without help,” said BBC Kharkiv. The Foundation noted that this is the first time the organization has received such attention from law enforcement. Previously, Har’kova recalled, problems only arose for the families under the Foundation’s care. Cases were brought against mothers for purchasing rare medications needed for serious illnesses, such as frisium. The situation with the fund has attracted the attention of the Presidential Council for Human Rights. Its chairman, Valery Fadeev, told the BBC that he was following developments but had not yet familiarized himself with the details of the claims: “The principle is simple: it is necessary to ensure the continued operation of this hospice so that children do not suffer. That’s all there is to it. As told to the BBC in the foundation, the reason for the investigation of the Ministry of Internal Affairs was a complaint about the care of a seriously ill child who is under the guardianship of Moniava. Several months ago, 12-year-old Kolya Moniav was brought home for quarantine in connection with the coronavirus. Kolya, a ward of “Dom s Mayakom” (House with a Lighthouse), cannot walk or sit due to dislocated hip joints, and he has respiratory problems. The number of offers should remain. Moniava herself wrote that the child has microcephaly, poor vision, epilepsy, and cannot swallow. He spent the first 12 years of his life in an orphanage.

Moniava said that after the conflict arose due to the care of Kolya, the hospice “House with a Lighthouse” began to lose donations, and they wrote “information” about her. We explain quickly, simply, and clearly what happened, why it matters, and what will happen next. Translation: episodes End of story Podcast advertising “The Ministry of Internal Affairs has received a complaint that the hospice is prescribing an excessive amount of narcotics to Kolya. I ‘cover’ Kolya with a fentanyl patch, which makes him sleep all the time, and I also illegally distribute his medication,” the head of “Dom s Mayakom” explained the essence of the complaint. “This is not true, all of Kolya’s medications are obtained not from the hospice, but through the state healthcare system. Kolya receives the minimum dose of the fentanyl patch. Without the patch, Kolya cries a lot because he is in pain from contractures and a dislocated hip joint.”

Over the past few months, Moniava has shared a lot on her social media pages about how she is changing her child’s life. She enrolled the boy in a regular school, got his ear pierced, took him to parks and cafes, and flew with him in a helicopter. This activity has provoked criticism against Moniava, including from families who have children with disabilities. They accused the head of the “Lighthouse House” of being unethical. According to the dissatisfied, Kolya is unable to express his consent to certain actions that he may not like. Moniavu has also been accused of using her child as a tool to promote her agenda. For example, thanks to her posts, the Moscow Metro extended the hours of a service that helps passengers with limited mobility get around. Dissatisfied people wrote complaints to Moniava, she herself talked about it in her social networks. According to one of them, specialists from the guardianship authorities came to her home – this was reported separately by the Social Protection Department of the Moscow City Hall. The specialists made no remarks about the child’s care. According to the head of the foundation, since she began to write about the care of Kolya, donations to the “House with a Lighthouse” have decreased by 2 million rubles. “When Kolya appeared, everything changed, now I receive complaints about me to government agencies and I am accused of everything under the sun,” said Moniava.

The caregiver took Kolya Moniav, who was seriously ill due to coronavirus quarantine, home and then officially became his guardian. She writes a lot about life with a child with special needs on her social media. The philanthropist noted that she knows the names of the people who complained about her to the guardianship authorities and the police (their names are not known to the media): “But it doesn’t really matter – who wrote, why they wrote […] What matters is why this whole situation is even possible in Russia? […] Why is the system of accounting for narcotics in medical institutions so complicated that practically no one can do everything without making mistakes?”. The problem of accounting for narcotics, including painkillers, necessary for seriously ill people, has been actively discussed in recent years. Doctors are afraid to prescribe necessary drugs to patients for fear of criminal liability. Human rights activists and the medical community have repeatedly asked Russian President Vladimir Putin to soften the laws in this area.

In 2018, the founder of the hospice aid fund “Vera”, Nyuta Federmesser, personally appealed to the president to facilitate access to painkillers. She repeated her request during a “direct line” in 2019. Feldmessser suggested solving the problem by decriminalizing Part 1 of Article 228 of the Criminal Code (“Illegal acquisition and possession without intent to sell narcotic and psychotropic substances”). Putin ruled out liberalizing the article, stating: “Because the threat to the country, to the nation, to our people is very great.” At the same time, in his opinion, the solution was “obvious”: the president then proposed the creation of a special reporting system that would record non-standard drug consumption or loss. The head of the Presidential Council for Human Rights, Valery Fadeev, stated in an interview with the BBC that he does not see a systemic problem in the requirements that doctors currently using heavy drugs must meet. “These rules are not very complicated, I have studied them. Yes, it’s work, paperwork, fuss. But it’s nothing extraordinary. Doctors and nurses who give injections can handle it. Nothing too difficult,” Fadeev said. According to the website “Judicial Statistics”, in 2019, 1213 cases related to the violation of rules on the circulation of narcotics were considered in court. 581 of them were fined, and 51 organizations faced suspension of activities.

Lawyer Anastasia Zhdanova of the Palliative Care Center noted in an interview with the BBC that local regulations regulating the circulation of narcotics in certain medical institutions reach 300 pages. “For medical professionals, the volume is quite large. Healthcare workers are not used to reading so many regulations. When it comes to journals, if a meticulous nurse works with them on a daily basis, it is not so difficult, they gain experience. However, there are not so many people in the medical profession who want to, love to, and can work with paperwork. They are attracted to medicine because they want to work with people, not with papers,” the expert explained. According to Zhdanova, in practice this means that there are fewer people than necessary willing to engage in such accounting: “In the end, if it is possible not to allocate a drug, it is better not to allocate it and not to associate it with this paperwork.” Digitization and electronic document management in this area could simplify accounting, according to the lawyer. Zhdanova noted that in her opinion, the biggest problem is not the accounting rules themselves, which have been simplified in recent years, but the high liability for violating them. “There should be no criminal liability for violating accounting rules, even if such violations resulted in the loss of a drug, but are not related to intentional diversion into illegal circulation.” At the same time, a complete rejection of administrative liability is a “double-edged sword,” according to one lawyer: “Currently, the mere existence of fines encourages the leaders of medical institutions to carefully manage the circulation of drugs within them. The 2019 report of the United Nations International Narcotics Control Board lists the reasons for the unavailability of strong painkillers in the world: insufficient training of national officials, inadequate regulation, shortage and low qualification of medical personnel. According to the report, doctors should be trained in drug prescription issues and be allowed to write prescriptions without fear of punishment.

“On Facebook, Moniava called the existing control by the Ministry of Internal Affairs over the circulation of narcotics excessive. She complained that the inspectors said that in their experience there is not a single medical institution that would maintain documentation without errors, and they drag them all to court.”