Slaveya Kostadinova: We have been fighting for a video urodynamics device for 2 years, but it is already working in "Pirogov"

Slaveya Kostadinova: We have been fighting for a video urodynamics device for 2 years, but it is already working in "Pirogov"
Slaveya Kostadinova: We have been fighting for a video urodynamics device for 2 years, but it is already working in "Pirogov"

Recently, the video urodynamics device, bought more than a year ago with the funds of the "Bulgarian Christmas" initiative, was put into operation in "Pirogov". The device is used to examine children with neurogenic bladder and costs about BGN 50,000. Until now, children were sent abroad for this examination, and the diagnosis of each patient cost between 5,000 and 10,000 euros.

Now the cost will be around BGN 50. It remains for the institutions to decide from whose pocket this money will have to come. At first it will be covered by the Children's Treatment Fund - the institution that paid for the same study abroad.

According to specialists' calculations, there are between 200 and 300 children in our country who periodically need such an examination. Among them, the largest is the group of children with a spinal defect called spina bifida. However, there are other diagnoses that are associated with the condition neurogenic bladder. All of them are disorders in the natural process of retaining and releasing urine, which have neurological causes. If they do not receive quality diagnosis and treatment, children with a similar problem can irreversibly damage their kidneys in just a few years.

To help his colleagues from "Pirogov" in working with the new equipment, Dr. Agnieszka Pastushka is visiting us for a week. Dr. Pastuska is a pediatric urologist and surgeon from Poland. He works at the Children's University Hospital in Katowice, in close cooperation with the Polish Spina Bifida Association and runs the only Urotherapeutic Studio for children with spina bifida in Poland.

The first child who was examined by Dr. Pastushka and the Pirogov team led by Dr. Stoyan Peev was six-year-old Timshel. This is what Slaveya Kostadinova, chairwoman of "Spina bifida - Bulgaria" and Timshel's mother, shared.

Ms. Kostadinova, what is the difference for you as a parent, whether the research will be done here or abroad?

- Invasive urodynamics can be done in clinics all over Europe, and the prices of the examination are different according to the standard of individual countries and reach up to 5000 euros. For nearly 2 years, the "Fund for Children's Treatment" Center has been covering the costs, but there is a problem with the families who do not know about it. The fund gives access to treatment, but requires families to specifically submit documents. And not all parents of children in need of treatment abroad know about this possibility. I personally know many knowledgeable and struggling families who were unaware and took out a loan to do urodynamics abroad.

In the case of invasive urodynamics, the test itself is part of routine care for people with neurogenic bladder. There is nothing more normal than that it is performed by the urologist following the child. Conducting the research in Bulgaria is a valuable investment that will benefit hundreds of children in the future.

Treatment abroad is a good option, but it is important for parents to have someone to rely on in Bulgaria, a few hours away. Very often, when a child is treated abroad, subsequent contacts with doctors are difficult, requiring long planning and correspondence. Now I am sure that if I call Dr. Peev, he will consult us immediately and examine us within a day or two.

How did the first tests of the new apparatus go in "Pirogov"?

- We passed the test first. I spent the whole morning with Dr. Pastushka. She is a great professional with extensive experience as both a urologist and surgeon. For the research itself - in principle, it should take about an hour, an hour or so. With us, the preparation took longer because we were the first and the doctors commented on every small step. Dr. Pastushka and Dr. Peev work excellently as a team. The study was also attended by a representative of the company that supplied the medical equipment.

Otherwise the research itself doesn't hurt. Timshell was super relaxed, she was having fun with my phone. It successfully deleted some apps, but it was calm, which is the most important thing for graphics. Dr. Pastushka and Dr. Peev commented on the results throughout. When we were done, they explained everything to me, gave me a copy of the charts and a key findings document, and put us on an antibiotic for a few days to avoid infection. Our results are good and if everything goes well, we will pass again in a year and a half. The management of "Pirogov" has prepared a great office at the European level, where small patients feel very comfortable. I would say that medically everything is going smoothly at the moment.

What will change for children with spina bifida after these tests are already done in our country?

- Over the last 20 years

worldwide medical progress has improved

and extend the lives of people with spina bifida. With this device, modern urological care for children with spina bifida enters Bulgaria. It depends on Bulgarian doctors, institutions and parents to turn it into a standard.

I will be more specific - this study gives doctors a clear idea of the state and type of damage to the bladder. And this, in turn, allows the most appropriate treatment to be prescribed. Through regular monitoring and treatment, we can protect the kidneys of children with spina bifida, avoid recurrent urinary infections and the continuous intake of antibiotics, and achieve dryness. In this way, we not only protect the he alth and lives of children, but also help them to integrate into society more easily.

Research enables doctors to prescribe the right treatment, but by itself it does not solve the problems. What else do children like Timshel need?

- Research is just the first step! For many people with spina bifida and a neurogenic bladder, self-catheterization is mandatory to protect the kidneys and achieve dryness. This means

catheter to be inserted and changed periodically

In childhood, this can be done by the parents, and later by the patient himself. Periodic (self)catheterization has been used for years all over the world as a method to control incontinence, but unfortunately it is poorly known in Bulgaria, even by some specialists in more remote hospitals. This is our next "battle" - to spread the method among families with spina bifida and achieve reimbursement of the catheters from the NHIF. We have been working in this direction for 2 years, still without any results. Now that research is no longer an issue, we will focus on this matter seriously.

It became clear that it is not known who will pay for the new research. Is there any commitment from the institutions?

- That's right. There is a lot of uncertainty as to who will bear the cost of the research going forward. We have been fighting for this device for 2 years and it turned out that buying it was the easy part. Another challenge is to clear up the issue of paying for the study and its consumables (the study requires a set of individual catheters for each individual patient, which cost about BGN 50., and in some cases also contrast material for X-ray). My personal view is that these costs should be covered by the NHIF. Unfortunately, however, the procedures there are difficult and I don't know how long they will take.

At first, we have the assurance of Mr. Pavel Alexandrov, director of the CFLD, that they will cover the costs of the consumables after an application is submitted by the parents, according to the fund's regulations. But this is a routine investigation and I don't think we should concern the parents, the Public Council and the administration of the fund in the future.

Together with the medical team, we will prepare a proposal to the Ministry of He alth and the NHIF and insist on quick action.

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