Patients wait months in secret registers to be added to the official hospital waiting list

Atlatszo has uncovered secret registers where patients wait months before being added to the official hospital waiting list. The phenomenon was reported to Átlátszó by three people living in different parts of Hungary. Some say they were unaware they were not on the official list. “Almost everyone has another waiting list” a healthcare worker confirmed to our newspaper.

Due to the progressive deterioration of her hip joint, Eva‘s doctor in Budapest recommended hip replacement surgery in December 2020. She received an appointment at the hospital outpatient clinic in the spring of 2021, after which she had to return every six months for a check-up. She only received a case identification number on the third occasion. It means she was not on the official institutional waitlist registry until then. Hip replacement surgeries have one of the lengthiest waiting lists in Hungary, with nearly 6,500 people waiting for an operation. The average waiting time is 189 days.

The national waiting list register, managed by the National Health Insurance Fund Management (NEAK), determines the order in which patients can access the care they need. The process of getting on the list is that the doctor determines the need for surgery and then registers the patient in the system. At the same time, patients receive their secret identification number, With it, they can track their medical records and the scheduled time for the operation in the online register.

Earlier, the hospital said that Eva would have to wait more than a year, but did not give an exact date for the operation. However, she was only added to the official waiting list after a preliminary, unofficial list. At the institution, twice as many people were waiting on the unofficial list, and most did not even know that they were not yet on the official waiting list. Because of the pain and the long wait, in the spring of 2022, she finally decided to go to a private clinic, where she was operated in the summer. She paid a total of two million HUF there.

Eva‘s story is just one of more than 200 responses to the survey conducted by Atlatszo in April on the experiences of patients with hospital waiting lists.

Waiting months for an operation for which statistics say only 13 days

Bence, who lives in a municipality in southern Transdanubia, also experienced a discrepancy with the official statistics. He was put on the waiting list for hernia surgery on April 2023, but it is unknown how long he will have to wait. He was given an appointment for abdominal surgery about a month and a half after receiving the diagnosis. He was told that he would almost certainly not have the operation before the end of 2023. Since then he has been to several hospitals, all of which have predicted similar waiting times.

“Before I went to the surgeon, I checked the official hospital waiting list database. It showed that where I was waiting, the average waiting time for this type of surgery was 13 days in the last six months. Even though I struggled in maths in high school, I could figure out without a calculator that six months is not 13 days,” he added.

 

Bence has not yet received a case identification number – meaning he is not officially on the waiting list. He will get more information about the date of the procedure in the autumn. By then, he will have been waiting for five months – while according to the official database, the average time for abdominal and inguinal hernia surgery with implants in South Transdanubia has been one and a half months over the last six months. Looking at the number of people waiting at specific hospitals, most institutions typically had patients waiting in less than 20 days.

Doctors predicted a wait of almost two year

Maria found out last November that she would need corneal transplantation. At a hospital in Budapest, the doctors told her to wait a few months because her condition might improve. When she went back to the hospital at the beginning of 2023, it turned out that the opposite happened. However, her doctor informed her that he would not be able to operate her because the Cornea Bank Budapest had closed at the beginning of the year – this means that only two hospitals now perform this type of surgery.

One hospital has predicted a 1.5-year wait, the other said she would need to wait for 2 years, with the earliest date for the operation being mid-2024. She was on the waiting list at both places, but she did not receive a specific date, nor did she find her case identification number on her paperwork. This means that she is not yet listed on the official waiting list. Indeed, waiting list registration for corneal transplants is not compulsory for all institutions, only for those where the waiting time exceeds 60 days. According to the website, three institutions are required to keep a waiting list, one of which is the hospital where Maria is waiting. 361 patients are waiting for such an operation at the Semmelweis University Clinical Centre. The average waiting time in the past six months has been 454 days.

“Almost everyone has another waiting list”

A healthcare professional confirmed the existence of unofficial waiting lists to Atlatszo. “They are in the drawer, the real numbers. Almost everyone has another waiting list where they record patients, it could be a chequered notebook, an Excel spreadsheet, or a program designed for that, but it certainly doesn’t always match the official figures.”

As to the reasons, he said no program matches patients who come in for a private appointment or an outpatient clinic and are registered for surgery on the official hospital waiting list. He noted, however, that the waiting list may also be shorter. For example, if a patient does not undergo surgery, sometimes they are not removed from the list.

Last year, Portfolio reported that many more patients are waiting for an operation than those in the official database. According to the paper, some hospitals do not provide up-to-date data, even though they are obliged to do so. They also wrote that where the waiting list is short but the waiting time has been high over the last six months, “something is wrong.”

The information on “alternative” waiting lists is supported if we look at the official register. Cataract surgery, knee replacement, and hip replacement are the three operations that regularly tops the lists, whether in terms of waiting times or number of patients waiting. We looked at these three surgeries to see which hospitals show extreme figures.

 

In the hospital of Tatabánya, 125 patients waited for knee replacement surgery in the last six months, but the average waiting time for treatment was nearly 800 days. Meanwhile, in Budapest, there are thousands more waiting, yet the waiting time is still lower. If we look at hip replacement, we find similar results. In the same hospital in Budapest, with almost 2,000 patients, the average waiting time is 356 days. Meanwhile, the hospital in Salgótarján, predicts the same waiting time, but with only a tenth of the number of patients. The most spectacular outlier is cataracts: the hospital in Sátoraljaújhely has 74 patients on the list in six months, but they have to wait an average of 512 days.

Nearly HUF 60 billion on reducing waiting lists

The government has also noticed the long waiting times: at the beginning of 2022, a government decision allocated 13.6 billion HUF for reducing waiting times for surgeries. It is not the first time the government has earmarked funds for this purpose: in ten years, HUF 58 billion was spent.

There was a need for reducing waiting times because elective surgeries were suspended during the coronavirus pandemic. Thus, the number of patients waiting increased, and the length of waiting lists has not returned to normal. In April, we used infographics to show the number of people waiting and the average time a patient has to wait for a particular operation. We also showed which surgeries have the longest waiting times.

Compared with other European countries, the situation is not as tragic in Hungary. Still, there are certain types of operations, including hip or knee replacement, where Hungary is among the leaders with long waiting times.

The Hungarian Chamber of Doctors (MOK) wrote in its response to Atlatszo that they do not see significant improvement since the pandemic. They think it is impossible to separate the issue of long waiting lists from the anomalies of the whole healthcare system: fragmented health structures, shortages of staff, and underfunding are all problems that need to be solved,  and until then, “all intervention is quick fixing with low effectiveness”.

We have contacted the National Health Insurance Fund Management (NEAK), the National Directorate General for Hospitals (OKFŐ), and the Ministry of Interior, which is responsible for healthcare but have not received any reply.

Written and translated by Luca Pete and Zita Szopkó. The original, more detailed Hungarian version of this story is available here. Bettina Bakó, Gerda Kántor-Újvári, Soma Kiss, Vanda Mayer, Sára Virág, and our reader helped to collect the waiting list data. This article was produced with the support of the Balkan Investigative Reporting Network (BIRN). The survey was conducted using BIRN’s B-Engaged tool. Cover photo: Sándor Pintér, Minister of Interior, source: kormany.hu, data extracted from the NEAK Waiting List page, source: neak.gov.hu.