Vlado Tanurov, parent of a child who has undergone surgery: You need iron boots to get a consultative opinion
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Inbox7: This is the weekly interview of the online magazine Inbox7. Regarding the death of Tamara Dimovska, truthfulness of the claims of the Health Insurance Fund and the Ministry of Health, the morale of Macedonian doctors, mafia in white coats, the agony of the families whose members undergo surgeries abroad, our guest is Vlado Tanurov, father of five-and-a-half- year-old Jani, who has undergone surgery in a hospital in Turkey, where Tamara Dimovska was supposed to be operated.
Mr. Tanurov, welcome. What disease does your son have and when and how did your ordeal start?
Tanurov: Our ordeal began at his birth, where as a result of medical error, my son got bleeding of grade 4 and consequently hydrocephalus appeared and at the age of 8 months an arachnoid cyst in his brain. As a result of that cyst my son has consequences today, he has spasm in his left hand and leg their movement is hampered, and he can use them very little. He can hardly move them. After the surgery his speech got better and he began to grow and develop more normally. This whole ordeal started from his birth.
Inbox7: What kind of medical error is it about and what were the allegations of other doctors about this doctor?
Tanurov: I asked a few doctors, this is not a claim without arguments. My wife’s pregnancy was in the best possible order. When we went to the delivery in the water breaking the amniotic fluid was quite green. The doctor who gave birth told me that if in one hour she did not start giving birth, he would immediately do it by caesarean section. But he left her for 11 hours, he was not there, as a consequence of this my baby has probably drunk from that contaminated amniotic fluid, meconium, which is very harmful to the bronchi of children that are not developed. Two hours after the delivery there was a cessation of breathing and bleeding in the brain. In consultation with other doctors about what should be done if this happens, I did not tell them it was about me, they all confirmed that the woman should be immediately opened with caesarean section, that there was no waiting in such cases and that this was a classic medical mistake. I asked them if they would say this before institutions, if I went any further, they all refused and did not want to interfere.
Inbox7: How did your ordeal continue?
Tanurov: Our ordeal started from birth. We did MRI where the hydrocephalus could be seen. As parents we wanted to get another opinion from abroad, and sent documents first in Germany. In Macedonia we were immediately recommended to put a shunt the water to flow out of my son’s brain. But we as parents sought opinion from others and when he was six months old we went to Germany where the child was examined by the director of the Clinic, Professor Dr. Underberg in Children’s University Clinic in Heidelberg. He saw the images, examined the child and said there was no need to put a shunt because water in the brain was not increasing and every 6 months MRI should be done and if the cyst changed, immediately to make intervention to avoid major consequences. In the next control an arachnoid cyst was formed size 8 by 5 cm. Immediately after that we went to Germany, the doctor said okay, the cyst was closed, you should not be afraid, but if there were changes we would need to operate. Here we were again told put a shunt that we had rejected and until the age of 3 and a half Jani had no problems. When he was 3-and-a-half years old, he had a seizure, it lasted 3 and a half hours, it could be said that it was some sort of coma. He was contorted and we were absolutely frightened. After this recovery we immediately went to Germany, it was in 2013, the end of April. The professor looked at the images and said that new images should be made, but it was necessary to make an emergency intervention because the cyst began to move centrally and there was pressure on the pons which have the function of major organs.
Inbox7: What happened next?
Tanurov: We received an invoice, how much would the operation in Germany cost, the sum was pretty big. We, as parents sought elsewhere where this could be done. We received information about Acibadem in Turkey, Professor Dr. Memet Ozek, the best in pediatric neurosurgery, so we went there for an examination. We went with the same images from here, but in those images he could not see what he wanted to see, and we were out there to make additional tests, MRI and 24 hour video EEG. After these recordings he said it was necessary to make the intervention as soon as possible. His recommendation was to make the intervention in December 2013, and we were there in September. For lack of money we delayed it. When we got back here as parents we started looking for help from other people through telephone lines, through donations and companies, in the meantime we were advised that the Health Fund gave money for this type of operations to cover our costs. In November 2013 we submitted a request for treatment for our son abroad. We collected all the required documentation of consultative opinion, invoices made home and abroad, opinion of doctors from abroad, opinion of doctors from Macedonia, as well as opinions by Sistina, where it was noted that this intervention was not done in the Republic Macedonia. We submitted the documents to the Fund, where we were asked for another invoice, I had the invoice from Germany and all the documentation was submitted to the Fund. Of documents, first you need a consultative opinion for which you should put on iron boots to get it from certain institutions.
Inbox7: How long did it take you to get the consultative opinion?
Tanurov: Almost a month if not more. Every day I went to the Clinic, every day I talked to the director of the Clinic, to some doctors there. It went terribly difficult, but in the end we managed to get it to be able to deliver it on. For three signatures we waited for a month and a half. It was a terrible ordeal that cost you money and nerves. It is really sad every day to be at the Clinic for something that you are entitled to
Inbox7: Which doctors did you need signatures from?
Tanurov: From doctors from Neurosurgery Clinic. I needed the signatures of four doctors plus the director of the clinic as authentic to be able to deliver on. The procedure with complete documentation of early occurrence of this cyst from all examinations till the seizure, invoices, diagnoses and the request shall be submitted to the Health Insurance Fund. There it should be decided positively or negatively by the first instance commission.
Inbox7: Which doctors are committee members? Are they specialists in your area or not?
Tanurov: Many times I have asked who the members were; waiting for a response, but it is kept in strict secrecy. When I asked them in the Fund they told me that they could not tell me who committee members were because I could put pressure on them. It seems absurd to me. Can an ordinary citizen put pressure on a prominent doctor to authorize treatment abroad. In this committee, as I understood, there are doctors of several areas, I cannot confirm whether a neurosurgeon is a member. Several times I mentioned in the Health Fund that it was not just that we did not have the proper equipment to perform such intervention in Macedonia, there was no experience, no one had performed this intervention. First and foremost in Macedonia there is no pediatric neurosurgeon. No one can convince me that the head of the adult and the child are the same. Why in the world there are pediatric neurosurgeons, pediatric cardiac surgeons, pediatric orthopedics and there are orthopedists, neurosurgeons and others. That is the first base why that intervention could not be made in RM, apart from not having the equipment and experience. Doctors here are not pediatric neurosurgeons.
Inbox7: What happened in the first instance commission in the Health Fund?
Tanurov: We were turned down on the grounds that all means to treat our child in the country were not exhausted despite the opinion of another private clinic stating that intervention could be done here. I do not understand what other means are available to perform that intervention in our country.
Inbox7: How long did it take for the first instance commission to pass the decision?
Tanurov: About 15 days. On December 19 they called me on the phone and said that we had been turned down and then I went to the Fund, took the decision and already in the afternoon I appealed to the second instance committee. After 5-6 days I received a response from the second instance committee, every day I asked and I got a response that the case had been considered and a request had been submitted to the Neurosurgery Clinic for consultative opinion. We waited for almost a month, New Year and Christmas holidays passed and January 15.
I called the Health Insurance Fund and they told me that they were waiting for the opinion, I went to the Neurosurgery Clinic to tell them that the opinion had not been sent for a month already. Then the secretary of the Clinic showed me the receipt stating that the opinion had been sent and that the Health Fund had received it. Then I immediately called the Fund to ask where the problem was and why it had not been discussed and then I got a response that they required an opinion to the second opinion obtained from the clinic. I went to the Fund, I talked, maybe I was a bit cheeky and immediately went out and I decided to get out in the media. I felt I could not go through this process, through this maze on my own. I addressed the media, only one print media published my story, I applied to other media, but they all kindly turned me down because the editor had not allowed it to be published. I even asked the electronic media and I was also turned down by most of them, in the end I got a call from Telma and my story was on Telma television for a few days in a row.
Inbox7: Which printed media published it?
Tanurov: Only Vest. After three days on Television Telma the fourth day early in the morning at 7:30 am I got a call from the Health Fund and I was told that my application had been accepted. I told them how can it be accepted, I know that you have not received the third opinion. How did you manage to resolve it? They responded that doctors talked on the phone and decided to approve the funds. I told them, so it is possible by phone, isn’t it. I was already ironic because I was fed up. So we had to do it by telephone and pressure otherwise we would not have made it.
Inbox7: How long did filing the first application to receiving a positive opinion take?
Tanurov: The first application was submitted in November 2013 and we got the final outcome to the end of January 2014. About January twenty-something, I am not sure really. We scheduled a surgical procedure in hospital in Turkey for 26 February 2014. From the hospital in Turkey they say the money should be paid 10 days before the surgical procedure, unless you pay you may lose the scheduled day or move it. That is the procedure, you get an invoice and book a surgical procedure.
Inbox7: When you received the Fund’s approval, how long did it take to get the money to schedule the surgery?
Tanurov: The surgery was scheduled in late December 2013 or early January 2014. But it took 7 to 10 days from the day I was told that my case had been positively solved to the day when money was transferred.
Inbox7: Did you have any additional problems after the surgery?
Tanurov: We were still in hospital when the boy began to vomit, vomit constantly. We called the doctor, he told us to stay, examined him and said that we should stay there to have some more tests, so that some complications do not arise because vomiting is the first sign of neurological problems in brain. We stayed there for additional six or seven days. The decision by the Fund says those are the costs. It is also absurd that a child at the age of four and a half is not entitled to an escort. So the cost of the mother who is in the hospital, before the surgery and travel expenses are not recognized, since we go by car. Because of the intracranial pressure the boy cannot fly. So they do not recognize other costs, which is also absurd. You cannot leave a child of four and a half alone in hospital. The Law says the child up to 3 years is entitled to an escort. So 3 and 4 years old child is still a child. These are additional costs that were on us. It does not matter, it is important that the boy is well. Now there will be two interventions that may be reduced to one. Intervention on foot and hand so that he could walk and the hand to relax and the contractures to get better, because now it is contorted. These interventions now follow. Learning from the first experience with the Fund, we have got the consultative opinion, but have not submitted the request, even though we know that part of that intervention is not carried out here. But frankly, we decided not to go through the same ordeal.
Inbox7: Second time you will go privately?
Tanurov: Second time we will go partly privately, partly with the help of the good people that helped us with donations.
Inbox7: The Director of the Neurosurgery Clinic signs the consultative opinion, and is also a member of the secondary committee.
Tanurov: This is information that I have found out afterwards, hopefully it is accurate. People who informed me that a member of the committee was the director who opposed it, that he would make that intervention here, and was signed on the consultative opinion which was really strange to me. If the Fund or the Ministry of Health do not want to hold on to what they have passed as a law, they should not push our doctors to enter these crimes and destroy lives just to save money. I believe that it was done under big, big pressure.
Inbox7: Can you explain the story with the EEG device?
Tanurov: Learning that in Macedonia a video EEG had been brought, which is the best to measure and see electricity in the brain, where seizures appear from, we asked to go for monitoring, but the Clinic had neither mounted the device yet, although it had been said publicly that the device had been donated by Okta, nor had someone been trained to work on it. It is a pity such device that is really useful in Macedonia not to work and we as parents go abroad and pay 1,000 Euros for one examination and later we cannot get back the funds.
Inbox7: How do you assess the health system in Macedonia?
Tanurov: Terrible, terrible. Equipment is brought that millions are thrown for and no one using it or equipment that abroad is used for smaller examinations than these. For example, for neurological examination there is no 3T MRI Scan. However, you go to private clinics to be examined and you pay, and 12 MRIs have been brought in Macedonia. Why not bring a higher quality MRI. So our health care system is in collapse, definitely. The boy is not feeling well and the family doctor is afraid to give a sick leave to my wife. The system is made that way. Can you understand that? We have to submit 300 documents so that he could give a sick leave to my wife. Eventually you take a few days off and lose everything. Why do we pay huge amounts of money to this system?
Inbox7: Director of the Health Fund Maja Zmejkova Parnadzieva claimed that the death of Tamara Dimovska was due to delay of a meeting of doctors from Turkey.
Tanurov: I mentioned previously, when looking for an invoice in Turkey, when looking for an invoice in Germany. I did not mention that when I got the invoice from Germany they told me, pay by then, your term is 28 August. They even then wanted to perform the surgery, but as we did not have the means we put it off. It was the same in Turkey. Here you are the invoice, the term is then and then. They were told the term. I cannot understand how they had waited because there was no term. That is the procedure in foreign hospitals.
You are submitted the invoice and they ask you when you want a term or will tell you the term may be from then until then. Depending on the urgency they give 2-3 months, you can make payments or cancel the term. In this case, if there was no term, the Turkish institutions themselves cancelled it because there was no means. Turks received the opinion that it would not be payable by the Fund. I have no other considerations. When I worked on the procedure I called Istanbul and said that I was waiting for approval by the Fund to be able to pay the funds. They said, okay, we have our man who is in touch with the Fund in Macedonia. It really is so. They have a representative in Macedonia that is in contact with the Fund or the health system and he knows whether it is authorized or not, whether it will be paid or not. The hospital in Turkey knew beforehand that it had been rejected, so that is why the term was “really put off” or was not scheduled.
Inbox7: Do you believe in the claim by the director of the Fund?
Inbox7: You do not believe it was so?
Tanurov: No. I have been there and do not believe so. With several hospitals and institutions I have discussed it and the principle is the one I said it is.
Inbox7: Where did it fail and who is to blame for Tamara’s death? Where did Macedonian health system fail?
Tanurov: In the regulations, not the law. Macedonian health system, if you read the law, says that treatment or examination abroad is approved for every person in Macedonia if in our country there are no conditions for this. It stands in the law, and the regulations say something else, even I do not know what it is. It is known only to the Fund and they say they are working by the rulebook, and there it says it is not allowed. I do not know the rulebook as you do. Perhaps you will come across it and see it. Tamara’s death is deplorable. Angel. It was stuck in institutions. In the Health Fund. Today I managed to read in the media that the parents received the decision to treat Tamara two days after her death. What a grief. And now how can they say they did everything? I believe that seven or nine committee members there are people who fought for small Tamara to leave immediately. But the decisions must be unanimous. There is no outvoting.
Inbox7: Are all members of these committees doctors?
Tanurov: They are all doctors and I think that one member is an economist from the Health Fund. That is the information I have. They are kept in strict secrecy. Names of some doctors in the secondary commission came to the public and it is true. They are.
Inbox7: Can the economist of the committee raise his hand against the child to go for surgery abroad?
Tanurov: One of them to say no and it is over. No matter who he is.
Inbox7: What is your message to parents who have children for treatment abroad?
Tanurov: Fight, go out in public, only that way we will get what we are entitled to.
Inbox7: Mr. Tanurov, I would like to thank you for this interview.
Tanurov: Thank you.
Inbox7: It was this week’s interview of the online magazine Inbox7. Thank you for your attention.