Months wasted by a patient awaiting hip replacement surgery, only to be removed from the list without warning

The Hungarian government has spent billions on reducing hospital waiting lists after the coronavirus pandemic, yet it has failed to reduce waiting times for several operations. However, this is only one side of the problem: several patients who completed Atlatszo’s survey reported a lack of information on waiting lists and the possible consequences of waiting, despite the law requiring them to be informed. A patient interviewed by Atlatszo was even removed from the waiting list without notification, resulting in months of wasted waiting time.

The law states that if a hospital adds a patient to the waiting list, they must be informed of the reason for the wait and the expected waiting time. The doctor must also explain the possible consequences of the waiting. However, this is not always the case, at least according to the experience of those who completed Atlatszo’s survey on hospital waiting lists. The story of Nikolett is a very extreme example: the hospital removed her from the list without saying a word or informing her in any way.

No information was provided to the patients

More than 200 people completed Atlatszo’s survey on hospital waiting lists at https://atlatszovarolistak.hu/.

The longest waiting time was reported by our respondent waiting for a bunion and hammer toe operation, a procedure that falls under the category of minor orthopedic procedures. The doctors predicted a waiting time of 1390 days (nearly four years) last year. Based on personal experience, patients experienced an average waiting time of several hundred days for operations such as gallstone surgery (an average of 739 days, or two years), knee replacement surgery (an average of 592 days), and inguinal hernia surgery (an average of 512 days).

The predicted date is only indicative: the actual date may be seen sooner or later depending on capacity. It is also important to note that those who completed our survey did not wait simultaneously on the lists: some were waiting when they submitted their response, and others shared their past stories. The region in which someone is queuing also affects the length of waiting lists. In some cases, the pandemic also affected waiting times.

“If a patient is added to the waiting list, he or she must be informed of the reason for the wait, its expected duration, and possible consequences,” says the law. According to personal experience received by Atlatszo, this was not necessarily the case.

Most patients did not receive information on why their registration to the waiting list was necessary and the possible health consequences. For others, the institutions explained the long waiting with a shortage of money, equipment, or staff. In another case, the hospital did not know when an operating room would be available, so they estimated a waiting time of 2-3 years.

“If it didn’t happen to me, I wouldn’t believe it”‘

Nikolett was put on the waiting list for hip replacement surgery at a hospital in Transdanubia. While waiting, it turned out that she had other health problems that needed surgery. “We agreed that I would let them know when the other operation was performed, it happened this spring. And then I looked at the official waiting list register because I check it sometimes. And then I saw that I’d been deleted from the waiting list.

It’s not that they postponed the surgery. The hospital just took me off the list.

I asked the hospital why they did it without informing me, and they said they would put me back on the list. So I was at the end of the queue again,” says Nikolett. According to the official database, she was due for the procedure in spring 2023. However, her case ID has been marked as “deleted for other reasons” since the beginning of 2023.

Patients must be informed of the removal from the list

A health professional confirmed to Atlatszo that in such cases, the general practice is to postpone the surgery. The law also states that it is possible to remove a patient from the waiting list only under certain conditions, and information must be provided in such cases. “The postponement must not adversely affect the patient’s place on the waiting list.”

Recent data from the official waiting list registry provides insight into the occurrences of the status “deleted for other reasons” for patients on the waiting list. To our knowledge, this category is used in cases where they cannot describe any other reason why the deletion is necessary – for example, an administrative error.

Nikolett was finally added to the list again in April 2023, when the planned date of surgery was set for early 2024. However, she feared that she would be deleted again without notification, so she checked in at another hospital. She is scheduled for surgery around February 2024, two years after she was first added to the list.

She has no choice but to wait patiently, even though now she can only walk with a cane and only short distances. Even so, she considers herself fortunate, because it is not uncommon for patients with the same condition to suffer from insomnia due to the intensity of their pain.

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: The renewed and expanded Jókai Mór Street Specialist Clinic of the Kertváros Health Service of the XVI. district on 18 March 2022. The clinic was renovated with more than HUF 3 billion from the Healthy Budapest Programme (EBP). Photo: MTI/ Noémi Bruzák.