Appeal to Gazeta. Should an oncology patient have to fight on their own to get chemotherapy?

Gazeta has received appeals from several oncology patients in Tashkent saying that the process of obtaining a preferential referral (order) for treatment has become complicated. According to them, delays in obtaining orders are being observed because the new system has not yet been fully implemented.

In early October, reports spread on social media that free services at the Republican Oncology and Radiology Center had been suspended. In response, the Center stated that free services had not been suspended it announced. "Only the patient referral procedure has changed. That is, previously, patients living in the capital would come to the center's city branch with a paper referral. Now, like in all other regions of Uzbekistan, they are being referred to the institution on the basis of an electronic referral through the DMED system (the state digital medical ecosystem — ed..)," the statement said.

According to the Center, the patient's route now proceeds as follows:

• First of all, the patient applies to a family polyclinic. There, they undergo blood tests, X-ray, and ultrasound (free of charge) examinations.
• Then the patient is examined by a district (city) oncologist, and clarifying examinations are carried out.
• An electronic referral is generated through the DMED system.
• If the referral is confirmed at the Oncology Center, a free examination, contrast-enhanced MSCT/MRI, PET-CT, histology, IGX, and free treatment (chemotherapy, radiation therapy, surgical procedures) are provided.

The Center also explained the reason for the change in procedure. "Under the previous procedure, most patients were sent to the center via DMED only with form 027, without undergoing the necessary examinations at family and multidisciplinary central polyclinics. As a result, the center's polyclinic was operating under excessive workload, and examinations that should have been performed in the regions had to be carried out at the institution at the expense of the State Medical Insurance Fund's funds. This situation led to funds intended for high-tech care being spent on primary examinations. It became difficult to determine whether patients applying from Tashkent city should be treated at the regional or republican level. The transition to electronic referrals is eliminating these problems."

What problems have patients actually faced?

Lola Kh.:Advertising on "Gazeta"

Unfortunately, the referral of patients under the new system at the Republican Oncology and Radiology Center is, in practice, not working. A patient returning for repeat treatment has to go through the sequence of "polyclinic — Oncology Center — polyclinic — back to the center again for chemotherapy."

What is the problem? Is it that the system was introduced hastily? Is it that general practitioners have not received enough practical training? Or has the entire burden of organizational issues been placed on the shoulders of a patient who is already fighting for their life?

I hope I am not the only one who has faced such a situation. Perhaps dozens of patients at the oncology center in our beloved Tashkent are now asking the same questions: "Where should I go? Whom should I approach? How can I get the necessary treatment without wandering from room to room ?"

I will tell you how this process went for me. I was given a referral in the usual manner. After waiting several hours in line, the district oncologist came out and said: "There are no referrals, no chemotherapy, no other matters — only a consultation is possible. I warned you in advance."

After that, I went to the general practitioner. Over the next three hours, we tried to process the preferential referral and get it confirmed at the Oncology Center. But nothing worked out.

Finally, at around 5:00 PM, an employee of the district health department who understood the issue well was found — she must have completed a professional development course. She helped process all the necessary documents in just 10 minutes. In total, three hours and 10 minutes were spent on nervousness, waiting, and uncertainty.

I would like to express special gratitude to the employee who helped me. Her professional skill deserves respect.

However, this very situation forces one to ask an uncomfortable question: if one employee knows how to process such referrals, why have other employees not received sufficient practical training? Why were training sessions not held, common mistakes not discussed, and clear instructions not prepared for doctors? This is not just about filling out paperwork. It is about patients who need to receive treatment on time.

All this time, I — a patient battling triple-negative stage 3 breast cancer — sat in anxiety. Questions crossed my mind: "What do I do now? Where do I go? Will they manage to process the referral in time? Will my chemotherapy be postponed?"

In such a state, even eating is difficult. And my strength was already running out. The body is going through the treatment process, the immune system is weakened, and every day requires great effort. Instead of focusing on treatment, the patient is forced to figure out the very system that is supposed to help them.

And then: "You didn't have to sit and wait," they said. Of course, I could have left. I could have waved my hand and waited for everything to resolve itself. But then what should I do about the cancer? After all, it does not wait.

Cancer does not know that the patient could not process a referral. It does not care whether the doctor has learned to work with the electronic system. It does not wait for cooperation between institutions to be established.

Now my referral has, finally, been processed and is awaiting confirmation from the center (for four days now). I hope everything ends well and my treatment continues on time.

However, I am not thinking only about myself. How many more people are going through the same ordeal? How many patients are sitting in lines, making phone calls, running from one institution to another, trying to make sense of incomprehensible requirements? Among them are those who work and cannot repeatedly ask for time off. For some, work is the only source of livelihood. There are also patients for whom sitting, walking, and waiting for long periods is difficult.

Should a person battling an oncological disease also have to run around themselves to ensure the healthcare system functions?

After all, do medical institutions, electronic systems, and responsible specialists (not just one specialist) not exist precisely so that a patient's route is clear, consistent, and timely?

I am not against changes. On the contrary, I support modern systems, digitalization, and improving the quality of medical care. However, any new system must first be fully implemented, and staff must be trained in practice. If difficulties arise, there should be a clear mechanism for resolving the problem quickly, rather than making the patient wait for hours and run around.

I appeal to the heads of the responsible medical institutions and health authorities: please pay attention to this problem. Train staff in practice, ensure a clear procedure for processing preferential referrals, and establish cooperation between polyclinics and the Oncology Center. The patient should not become an intermediary between institutions.

Now I want to say my most personal words. With God's help, I have covered 90 percent of my journey together with you. I endured, I fought, I believed. But today my hope is fading. My strength is low. My immune system has weakened. I am not just physically tired.

Anvar M.:

Previously, patients with an oncological diagnosis were given an order at the Oncology Center based on the relevant district referral to undergo their next course of treatment. Each patient has an individual treatment protocol (the chemotherapy cycle is 14, 21, or 28 days).

Now an electronic system for issuing orders has been introduced. For this, one must first apply to a family polyclinic; the polyclinic is supposed to conduct tests (it cannot perform the laboratory examinations needed to determine whether chemotherapy can be administered — these include detecting urea, creatinine, ALT, AST, and other indicators in the blood). For this reason, the patient has to take the tests at a private clinic or lose a day.

Then the polyclinic sends the document package in digital form to the district health department (but this package is incomplete). The department approves or rejects the request. If approved, the documents go to the Oncology Center. There, they are again sent for review by an internal commission. The commission cannot cope with the large flow of requests.

As a result, the patient spends two or three days waiting in line at the clinic, retakes the tests at the Oncology Center, or turns to a private laboratory. Patients exhausted by running around in queues are even willing to receive treatment at the center on a paid basis.

Munira Z.:

My treatment under the preferential referral was confirmed a few days ago, after I had gone through all the necessary procedures. At the Oncology Center, I was told that only the state insurance needed to pay for my treatment.

Today I called the call center of the state medical insurance (fund — ed.). They said that the center must admit me for treatment and then send a report, after which the treatment costs would be paid.

"We don't know in advance how much this will cost," they said. At the Oncology Center, meanwhile, they say they cannot admit me for treatment until the insurance payment is made. What should I do now?