The 72-year-old woman was admitted to the Semmelweis University’s surgery ward in July 2023 because of a wound on her thigh that did not heal. Her family was not worried. “Thank God she got there,” thought her daughter, expecting a professional team of doctors and modern equipment to await her mother. A relative previously treated in another department had nothing but good things to say about the hospital. When her mother complained that the hospital staff did not care about her, her daughter did not believe her at first. “I told her there was no way that could be true,” the daughter recalled.

Then, one morning in early August, her mother called her in tears to tell her that they were going to amputate her leg from the hip. Until then, the doctors told the family that the wound was healing slowly but nicely.

A few days later, another surprise came when the woman searched in vain for her mother in her hospital room. She found her in another room, isolated. On a paper taped to the door was the name of a dangerous multiresistant bacteria: MRSA (short for “methicillin-resistant staphylococcus aureus”). She photographed the paper and emailed the doctor in charge to ask about it, as she rarely got to speak to the doctors in person. In his reply letter, the doctor told her that she couldn’t have seen such a sign “as we have not had a patient with that bacteria for a long time”. The doctor added that they found an other bacteria called Acinetobacter Baumannii in her mother’s wound.

Subsequent laboratory tests revealed that both hospital-acquired infections had appeared in the woman’s body, and her condition deteriorated rapidly thereafter. The elderly woman told her daughter that “it feels like something is chewing the wound”. They amputated her leg, but that didn’t help, and after long suffering, she died on September 1st.

Ever since, her daughter has been wondering if she did something wrong.

“I wonder what I should have done differently. If I had noticed something was wrong, if I had taken her to another facility sooner, would things have been different?” – she asks.

The hospital experience caused similar dilemmas for a 34-year-old pregnant woman who was admitted to the Baross Street Department of Obstetrics and Gynaecology at Semmelweis University on Christmas 2022. She was worried about the risk of premature birth, but she was also confident that she would be in good hands at the clinic with its long history.

But her hopes were soon dashed. In the first few days, she waited in vain for an examination and every doctor told her different things about her condition, and she didn’t know how long she would have to stay. She said that they only started to communicate with her after she had started crying in the corridor, feeling helpless. She was examined again and then prescribed a strict bed rest. She was put in a room with five beds where he had to use a bedpan, but there was no room divider to add a little privacy. She also claimed that patients’ privacy was not respected when they were washed.

In mid-January 2023, her baby was born by caesarean section and was healthy, but the mother’s laboratory results began to worsen after the birth. Doctors suspected an infection, so they washed her womb, but she says the doctors didn’t explain beforehand what would happen during the procedure. She was taken into the operating room, laid on the table and then given a consent form to sign.

“I thought it was a joke that this would happen, lying on the operating table with my legs tied and my lower body uncovered,” she told Direkt36.

She was also not given detailed information about the infections found in her body. “The next day, the doctor came and jokingly told me that they found four things, and that’s not good because three of them shouldn’t have been there,” she recalled. The results revealed that four types of bacteria were found in her postpartum sample, including ESBL-producing Klebsiella pneumoniae, a bacteria primarily found in hospitals.

In addition, the doctor had only told her they would treat her with antibiotics, so she had to look up the infections online. “They didn’t treat me as a partner, my boyfriend had to run after doctors, and it was difficult to get even the slightest information,” she says. She also added that during her hospital stay, she could only keep track of her medical records from the online health system, EESZT. She recovered after antibiotic treatment and left the hospital at the end of January.

Following our articles on hospital-acquired infections over the past two years, Direkt36 readers have shared more than seventy stories of hospital-acquired infections. When we studied them and interviewed several patients, we discovered that in most cases, in addition to the suffering caused by infections, patients had to deal with unfair treatment, neglect and a lack of information.

We, therefore, decided to continue the project by focusing not only on the problems posed by infections but also on the conditions under which they are treated in hospitals. Our research revealed that many patients who were already vulnerable and suffering from dangerous infections on top of their underlying condition did not understand what was happening to them because they were not given details about their treatment and condition.

Yet, under the law, all patients are entitled to information about their health, including the tests they are being offered and their results. The institution is therefore obliged to inform patients if they contract a hospital-acquired infection during their treatment. However, this is not always the case, and Direkt36 spoke to at least half a dozen patients who said they had not been informed of the infections they had contracted. Meanwhile, they all reported being humiliated during their hospital stay.

Even though many healthcare workers continue to do a tremendous job to ensure that patients receive proper treatment in dilapidated conditions, the lack of information and frequent mistreatment is common knowledge.

Tens of thousands of complaints about this have been made to so-called patient rights representatives in recent years. Their job is to help patients know their rights and deal with the complaints they receive. But they have failed to make any real difference in decades.

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The government is so aware of the problem that it published a plan of action in 2011 to reduce patient vulnerability. But no concrete action has been taken since then.

In a statement sent to Direkt36, the Ministry of the Interior, currently responsible for healthcare, said several measures had been taken to reduce patient vulnerability. For example, patients have electronic access to their medical records, but there is also ongoing training for health workers and posters to help patients find their way around. The ministry says these are having a long-term impact.

Semmelweis University, when contacted by Direkt36, replied that they could not answer individual cases for legal reasons, so they only responded to our questions in general. They wrote that patients’ rights are “respected in all cases” and that “general patient information is provided to patients”. As for the dignity of the patients, they wrote that they would try to ensure that “as far as the infrastructure allows”, they would also try to provide separation.

Degrading treatment, lack of information

Semmelweis University is one of the country’s largest and most modern hospitals, with clinics serving around ten percent of Hungarian patients. According to Direkt36’s previous data analysis, hospital-acquired infections are not a frequent occurrence at the institution either. (In the last two years, we have been dealing with the growing problem of hospital-acquired infections in a series of articles and we have also produced a documentary film about our investigation.

Hospital-acquired infections are infections that can be contracted mainly by weakened patients during their hospital stay. If not treated in time, they can be fatal.

In recent years, Semmelweis University has typically ranked in the middle for all three types of hospital-acquired infections mandatory to report. For example, in 2022, Semmelweis University was ranked 34th out of 70 hospitals in terms of the frequency of infections caused by Multidrug-resistant bacteria, which are resistant to antibiotics.

However, this does not necessarily mean the actual number of infections that have occurred in the institution. Although hospitals are obliged to report all cases of infection to the National Centre for Public Health and Pharmacy, this is not always done. The case of the elderly woman and the pregnant woman at the beginning of this article is a case in point. They are not included in the database of the National Centre for Public Health and Pharmacy (NCPHP), i.e. Semmelweis University has not reported them.

In its reply to Direkt36, Semmelweis University said that hospital-acquired infections are reported to the NCPHP following the law. If the pathogen is detected in the patient’s body but does not cause symptoms, they do not have to report the case. This is indeed what the legislation requires hospitals to do, but in the cases described above it is not clear exactly what symptoms the infections caused. The hospital could not answer this either, because, as they stressed in their reply, they cannot respond to individual cases to protect personal data.  The NCPHP did not respond to Direkt36’s questions.

Respect for human dignity or information for patients (and relatives) is often a problem in the hospital. Direkt36 spoke to a total of seven patients who have been treated in the clinics of Semmelweis University in recent years – in surgery or in the Baross Street maternity ward. What these stories have in common is that the patients say that they were not informed or were rushed through the institution, and several of them also reported humiliating treatment.

For example, we spoke to a disabled mother who said she had spent hours sitting in her own blood and amniotic fluid because the department was not accessible by wheelchair and she could not clean herself. The woman recalled that there was a nurse who told her “she would not allow wheelchair users to have children”. Her doctor told her in a condescending tone that her baby was not healthy, but it was too late to abort it. The baby was born healthy, but the mother is still upset that she has not complained about what happened to her. Today she feels she “should have done it”.

Semmelweis University confirmed to Direkt36 that the restrooms in the hospital rooms used by patients in Baross Street are not accessible by wheelchair due to the characteristics of the building, but added that there is an accessible toilet in the basement, which can be easily reached with an elevator.

Zoltán Zólyomi’s 24-year-old son was admitted to the Department of Surgery following a liver transplant. While he was there, no one explained his test results to him and the family they could only follow them from the online system EESZT. After another operation, the parents tried in vain to talk to their son, but only the next day did they find out that he had been put on a ventilator. When the parents questioned the doctor about the fact that they had not been informed of this development, the father said, “Why should they have been? After all, their son is an adult.” Two days later, the young man’s circulation collapsed and he died.

According to Semmelweis University, they receive relatively few complaints from patients. For example, the Department of Obstetrics and Gynaecology, which treats more than 150,000 patients a year, received a total of 11 formal complaints last year about violations of the right to information or human dignity.

The Department of Surgery, Transplantation and Gastroenterology, which treats around 100,000 cases a year, received only 14 complaints in 2024. They also added that for each complaint, “an internal investigation is launched, resulting in a review and regulation of procedures as necessary”.

However, the fact complaints can be made not only to the hospital but also to, for example, patient rights representatives, the NCPHP and the Medical Research Council paints a more nuanced picture. There is no information on how many complaints have been received by these bodies, because there are no statistics broken down by hospital or clinic, and the NCPHP did not respond to our questions.

“It’s just wound drainage, lady”

Patient information may be incomplete or inadequate not only in Semmelweis University clinics but also in many other hospitals across the country.

For example, a woman who underwent spinal surgery – whose story we detailed in a previous article – asked her doctor and nurses at the Bács-Kiskun County Hospital why her surgical wound was not healing, but they did not tell her that she had contracted MRSA. ” “It’s all right, lady”, “It’s just wound discharge, lady”, the woman, who asked not to be named, recalled to Direkt36 earlier how the doctor reassured her month after month. The woman was not told at the hospital what MRSA infection meant or the reason for her being taken back to surgery. We contacted the Bács-Kiskun County Hospital in vain with questions about the case, but they did not reply.

As we detailed in our previous article, the woman had been suffering for three years when she consulted a private doctor in Budapest. According to her, the doctor cured her of the infection within a month, but it still had serious consequences.  “I can only limp with two crutches, I can’t stand long enough to peel an onion” said the woman, whose right leg is now five centimetres shorter than her left.

Although in this case, too, the doctors at the hospital did not tell the patient about the infection, the lack of information was not a factor in the damages claim that the woman brought – and won – against the hospital. This is because the damage to her health was not caused by the lack of information but by the infection and its mismanagement by the hospital. According to Dr. Péter Szűcs, the lawyer representing the woman, it is not worth going to court just for the violation of patients’ rights – if there is no causal link to the health damage – because a large compensation cannot be expected under current case law. According to the lawyer, it is therefore not possible to change doctors’ attitudes towards patients and force them to be treated with more respect in hospitals.

Other lawyers have had similar experiences.

“In Miskolc, such cases are usually not decided in favour of the patients because they are difficult to prove,” said Dr. Attila Zolnay, who as a medical lawyer deals mainly with medical malpractice cases.

“Unfortunately, it is not worth suing over such cases, because they are difficult to win, and if the victim has not suffered any concrete damage, he will receive at most 50,000 forints compensation at the end of the case,” he said. He added that he believes that patient information is mostly non-existent in Hungarian healthcare culture and that it is a common problem that doctors are rarely available for consultation. From the point of view of patient rights in Hungary, “we are in the dark ages”, and if society does not make a problem of this, it will not change.

According to Réka Lebedi, a lawyer at the Hungarian Civil Liberties Union (HCLU), “it is difficult to assert in court and even in public opinion” that there is a problem of lack of information and inhumane treatment in the health sector. But the law requires not only that the information should be provided, but that it should be given to the patient in a form that he or she can understand. This is important to ensure that the patient signs an informed consent form for treatment.

A similar story was told by a woman from another large hospital in the countryside, who also asked not to be named because the infection she caught in the hospital meant that she had to return for treatment to date. For this reason, we are unable to name the hospital concerned as the source fears retaliation. However, she showed Direkt36 documents obtained during her treatment which confirm the story of the infection.

The woman, who previously worked as a nurse, also underwent spinal surgery in 2013, during which she contracted MRSA. As her condition did not improve, another surgery was necessary. A few days later, a nurse stood her up to go to the bathroom. The nurse looked at her bed and said “Oops” when she saw that the sheet underneath her was bloody and oozing.

“I asked what ‘oops’ meant, but she said she didn’t know,” the woman recalled.

After that, nurses put a bandage on her wound every day, followed by another surgery and antibiotics, but they still didn’t tell her what was happening to her. “They didn’t tell me anything,” she said, although she said they must have known he had an infection by then because they had started treatment. Having worked as a nurse herself, it never occurred to her that they were hiding something from her, even though she felt she was in trouble.

“I started to get suspicious when they told me they were going to take me to the septic ward, but I asked in vain, but they didn’t give me anything concrete,” he recalls. “With such poor organisation, I’d die if I went there,” she said and eventually decided to go home and see a nurse instead. She was nursed at home for eight months until she went to a private doctor in Debrecen, who told her she had an MRSA infection that had practically eaten away her vertebrae.

Since then, she has been receiving a disability pension of just over 120,000 forints a month from the state, and to this day she has to return to the same hospital for treatment.

“My biggest regret is that I didn’t dare to ask and to be suspicious. I want to share this story with others so that people dare to ask the doctor,” she told Direkt36.

It is by no means an isolated case that – like the woman who died in the department of surgery of Semmelweis University, described at the beginning of this article – relatives only learn by coincidence that their relative has a hospital-acquired infection. In the spring of 2022, an elderly woman who had previously worked in the healthcare sector was admitted to a hospital in eastern Hungary with fractured vertebrae and was visited by her daughter. The woman asked to remain anonymous and asked that the name of the hospital not be published because an acquaintance of hers works there and she fears the consequences. However, the documents provided to us convinced us that her story was true.

On one visit, the woman did not find her mother in her previous room, and it turned out that she had been moved to another one. “They never said that there was a suspicion of infection in the hospital, only that there were tests and that she would be isolated in another room until then,” says her daughter. She added that doctors were unavailable most of the time and nurses did not give information but said to consult the doctors.

Consenting on drugs

Violations of patients’ rights and dignity in healthcare are so common that they are accepted by everyone involved in public healthcare.

According to Réka Lebedi, a lawyer at HCLU, it is a systemic failure that patients’ rights can be ignored to such a degree in Hungary. “We need a change of attitude because even if someone has worked 23 of their 24 hours, they are still expected to treat even the last patient with respect and not to violate their most basic human rights,” she told Direkt36. She added that she sympathises with hospital staff, but the law does not allow them to spare the few minutes needed to tell the patient what will happen to them during their treatment.

“Hungarian society is not socialised to think that these are problems. The current perception is that if you went to the doctor and you were cured, then be happy to be alive and it doesn’t matter what happened in the hospital. Nobody expects quality from public health care,” she concluded.

Similar treatment was reported earlier to HCLU by Mónika Beczkó, who was already lying on the surgery table when she overheard the staff talking and found out that she was going to be anaesthetised before her caesarean section. Beczkó then wrote a letter of complaint to the hospital, which she said was “swept off the table by saying that we should be happy that we were healthy and that they had done everything right”.

With the help of HCLU, she filed a lawsuit against the hospital for failure to provide her information about her treatment, which resulted in a precedent-setting decision by the Curia. It ruled that it was not in accordance with the law that the pregnant woman had learned about her anaesthesia from a background conversation with health workers immediately before the operation and that she became therefore “agitated and unable to ask questions”.

A young doctor, who has been working in the surgery department of a large hospital in Budapest since 2011, also told Direkt36 that the main reasons behind the neglect of patients’ rights were a lack of professional staff and an overwhelming workload.

“The emergency ward is like a war zone in the Balkans,” he said, referring to the hundreds of patients arriving compared to the originally planned capacity of 80, which means they have no chance to talk to everyone for minutes. “We try to explain the basics, but we don’t go into the details, which would be very important to spend time on,” he said, adding that the shortage of professional staff meant that this was not possible. He said the situation could be improved if there was a dedicated specialist who could go through the ward and explain the procedures and risks of the treatments.

The Ministry of the Interior is also aware of the problem. According to a publicly available ministry document, doctors do not provide proper information to patients because they simply do not have the time to do so. “Another problem is that patients’ relatives have difficulty or no access to information, neither by telephone nor in person”, says a report summarising the experience of the Integrated Rights Protection Service (IRPS) on patients’ rights in 2023. The report also shows that the number of complaints about patients’ rights is increasing, with more than two thousand formal complaints a year about a lack of information.

In 2023, 9 percent of complaints were related to a breach of a patient's right to information. According to the document, it is common for "patients to have been given not enough information", but there were also cases where information was provided late.

More than 3,100 requests were received by patient rights representatives complaining about the tone of voice used by hospital staff towards patients and relatives, their lack of empathy and the use of insulting language. "Because of the pressure of workload, care workers - both doctors and specialist staff - often take their tensions out on patients and behave in a way that raises ethical questions," the report concludes.

There have also been numerous complaints about patients being asked to sign consent forms while already drugged before surgery. This was confirmed to Direkt36 by Dr. Attila Zolnay, a lawyer specialising in medical malpractice cases. According to him, it often happens that patients are not even given verbal information about the risks of surgery, they are just made to sign the information sheet „while they are already drugged and halfway to sleep".

Inadequate or incomplete information to patients has long been a problem in the Hungarian health sector. In 2010, a European survey was carried out to assess the implementation of patients' rights in EU member states. The research, carried out by the Active Citizenship Network and coordinated by HCLU in Hungary, included a questionnaire filled in by NGOs as well as governmental and institutional actors. Questions were asked on how the government supports patients' rights and what citizens' experiences have been when receiving medical treatment. Hungary ranked 19th out of 20 countries, with only Cyprus ranking worse. The survey highlighted that one of the most serious problems in Hungary is the lack of patients' right to information.

The Orbán government promised to change this back in 2011. At the time, it published a program called the Semmelweis Plan to transform the healthcare system. The plan included the proper enforcement of patients' rights and the reduction of patients' vulnerability. To achieve this, the National Center for Patients' Rights and Documentation (NCPRD) was set up, which was also responsible for running the system of patient rights representatives that has been active since 2000. The new institution was responsible for developing guidelines and manuals to provide patients with more information, avoid information and professional errors and increase trust between doctors and patients.

However, the organization was not given any official powers when it was set up, and in 2016 it was merged into the Ministry of Human Resources. There has been no independent Health Ministry in Hungary since 2010, first, the public health sector became part of the Ministry of Human Resources then it was transferred to the Ministry of the Interior. "Patients' rights will not be resolved overnight, it is about changing the attitudes of the players in the sector, but we are already seeing results," Miklós Szócska, then State Secretary for Health, told a conference in Budapest in 2014. A decade later, however, there is no sign of any real improvement in the field.

Since 2017, the organization responsible for protecting patients' rights has been called the Integrated Rights Protection Service (IRPS). Since then, the number of patient rights enquiries has almost doubled, but the subject of complaints has not changed much. Eight years ago, the organization's report already mentioned that "in most cases, patients are not able to receive individualized and complete information, but still do not dare to ask questions during or after the consultation."

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While the number of complaints is increasing, the number of patient rights representatives dealing with them is almost the same. There are currently only 21 patient rights representatives for every hospital in the country. "It's unrealistic to expect twenty thousand cases to be handled by twenty people a year...You can put out fires from this, but you can't do high-quality work except in a few selected cases," an expert who asked not to be named and who has insight into the functioning of the patient rights system told Direkt36.

Questions about the functioning of the system were also sent to the Integrated Rights Protection Service, but the Ministry of Interior sent a reply on their behalf. It said that the organization is carrying out its tasks effectively and "planning the appropriate allocation of human resources according to the needs of the population". They stressed that the IRPS "also provides valuable feedback to health institutions, which contributes to improving the quality of services". According to the Ministry, the increasing number of complaints may also be because patients are "increasingly aware of their rights" and are more active in exercising them.

"There is an increasing demand for comprehensive information," they say in their response, which also repeatedly stresses that their priority is to improve patients' rights.

There are indications that patients with complaints may not even have the sympathy of the patient rights representatives. Two years ago, Dr Ingrid Lengyel, a patient rights representative working in Budapest, criticised the manner of patients at a patient safety conference. According to Házipatika’s report, Lengyel said that patients sometimes get carried away when they complain about being insulted during medical treatment.  She also mentioned that she believes patients often hide their symptoms or "sugarcoat" them at the doctor's office. "Is it possible that we do not mention yesterday's fainting on the kitchen floor?" - she told the conference.

We contacted Lengyel with questions, but the Ministry of Interior responded on her behalf, saying that the aim of the presentation was to "demonstrate the importance of active participation of patients and relatives in the care process". They noted that "accurate and honest communication is key for successful care, as is a mindful and cooperative attitude on both sides."

According to lawyers interviewed by Direkt36, it is not always clear whose side a patient rights representative is on. In their experience, they often convey the institution's position rather than stand up for patients' rights. This was the case, for example, for Zoltán Zólyomi, a father whose 24-year-old son died in the hospital. He had contacted the patient rights representative but had not received any meaningful help. According to Zólyomi, the representative offered to review the patient's documents but indicated that in their opinion there was not much that could be done. "They basically talked us out of trying to do anything or report anything."

The Ministry of the Interior says the patient rights representatives are not trying to discourage patients from suing. However, they say litigation is not always the "best option" for resolving patient rights violations, which is why "the IRPS always seeks to raise awareness of peaceful and direct options that offer a quicker and simpler alternative than going to court".

Illustration: Máté Fillér / Telex