Survey Reveals Patient Despair: Cancer Left in Closed Quarantine Has Something to Say

“I can’t go to the doctors for a checkup to order the necessary tests, they told me to wait until the quarantine is over. Every time my disease (I even have three cancers) can come back, progress, which means death is near I would like to receive specific help, I have three children, a grandson was born, I worked for my homeland in Lithuania for more than 30 years, a teacher, “wrote the woman.

This is just one of the patient testimonials electronically collected by the Association of Cancer Patients (POLA) on May 21. – June 1, 670 respondents, of whom 584 were women (87%), 85 were men (13%) and 1 did not indicate gender. Of these, 621 (92.5%) are cancer patients. 46 percent. The respondents are between 40 and 55 years old. age 30 percent. – 56-65 years, 14 percent. – over 65 years, the remaining 10 percent. – 18-39 m. years.

According to the data collected by the association, there is no single treatment center that cares for oncology patients in which the patients had no problems during quarantine.

“May 4 I called the reception but I couldn’t call all day. I called the next day, but they told me that there were no places left for August (my scheduled visit was supposed to be in July) and now I have to call on June 1”, A person over 65 said about her experience at the National Cancer Institute (IMI), a woman with stage II cancer.

The experience of another middle-aged woman (between the ages of 40 and 55) with stage III cancer was such that she was not initially registered for a consultation because the queue was until August.

“I called the doctor on a personal phone and then he prescribed a consultation 30 days later. He called and consulted remotely, “said the patient.

Another cancer patient in the same age and stage group had the impression that IMI doctors did not know exactly what to do after treatment.

“The chemotherapist and the radiation therapist send him to the mammologist, who does not want to accept it, tells him to return to the chemotherapist. And so I am not healthy, I am tired of searching,” shared the patient.

Patients not only complained but also appreciated their efforts to help them

Patients at the Santara clinics across the street also faced problems.

“After dropping off the oncology patient at the Santara clinics, I had to wait from 7 a.m. until 3 p.m. until he underwent chemotherapy. Maybe it would be fun if it weren’t for the pimple: no chance of Going to the bathroom in the lobby (near the wardrobe) while you wait so long. Located on the ground floor, but on duty does not allow you to go, the outpatient clinic at the reception is also closed, and also does not allow you to go. During quarantine, go to The city looking for a public toilet is not an option either. All that was left was to go to my own car and the boat.

While I was waiting, I saw that there is a lockable toilet in the hall next to the locker room, but also for unaccompanied people. “There is no thought of those who accompany the oncology patient and continue to be admitted: rescuing the drowned is a matter of drowning,” said the wife of the oncology patient.

A woman between the ages of 56 and 65 with stage 2 cancer reported her problems by trying to contact a doctor7.

“I got several numbers at the Santara clinics, which I tried to contact the doctor by calling, and finally received tips for contacting the doctor by email. by mail. I wrote, but have not yet received a response, “wrote the patient.

At the same time, patient testimonials show they appreciated the doctors’ individual efforts to help them through this difficult time.

“At least in my case, both the oncologist and the surgeon just said to call and offer the time of arrival and consultation. They should accept a certain number of patients, but accept all of them. Probably they cannot leave people to their fate Thank you! ”Wrote a woman between the ages of 45 and 55 with stage 2 cancer.

The troubles near Vilnius are not over

Undoubtedly, the problems of the patients near Vilnius did not end. On the situation in the Kaunas clinics, a woman between the ages of 40 and 55 with stage 1 cancer said: “I went to an oncologist in late April. My sister informed me that she would not register and consult in the oncology department, she transmitted information to me about where and when a family doctor should go, then I registered with her, after speaking with her, I told the oncologist where she told me that outside. The family doctor then contacted again and reported a remote consultation with an oncologist who was appointed on June 3. And it all lasted almost a month. I am no longer talking about when there will be a physical consultation, a specific investigation conducted. A very large circle has …

“I rang all the bells for 5 days: at the reception, at the family doctor, at the clinics and directly at the oncologist. Then I tried to call the oncologist directly. After 5 days of pushing, I dissected and had an ultrasound at a private medical center. All the results are good. I’m young, I’m not lazy to Google cabinet numbers and I have money for paid services. But misery for older patients, “wrote another patient.

A woman between the ages of 56 and 65 with stage 3 cancer said she registered in Kaunas in February at 7 p.m. In the morning, the visit was scheduled for April.

“It was not possible to register earlier the day of registration by phone or online (phone is busy, internet access is not active), so other patients taught me that it is better to arrive early in the morning. About ten women were already waiting at the reception. I was very happy to receive the coupon on April 6, but the quarantine buried the opportunity to receive the service. No one contacted me to reschedule the visit, and when I called I asked when I could re-register and they replied that I had no information. I changed the medical institution and now I am receiving treatment in Klaipeda, ”said the patient.

Patients complained that it was difficult for them to call

In Klaipeda, a middle-aged woman (age 40-55) with stage 2 cancer said she had not registered for a consultation at a university hospital.

“I can’t find the oncologists’ work hours anywhere. You can’t make a phone call. In general, I don’t know how to get to the doctors,” said the patient.

A woman between the ages of 56 and 65 with stage 3 cancer said the quarantine severely affected oncology patients without even receiving the minimum necessary procedures (such as port redness), although other procedures such as marker removal were performed. cancer, ultrasound of internal organs. .

Another patient in Klaipeda (between the ages of 40 and 55) with stage 4 cancer said that she had to attend chemotherapy courses every week and that she had to have a Covid-19 test before going to the day hospital.

“First of all, I don’t understand why I was not informed about the hospital and I had to postpone the procedure for a week. I am glad that the chemotherapist has hinted that he only needs to do this test once a month. The second problem is that we have a clinic fever in the city, but we are told to go to another city to a mobile point to do this test.

I have no idea why, if a fever clinic also does such tests, but the doctor explains that if I want to have a test in my city, he can fix it but formalize the documentation and go to the hospital or isolate himself for 2 weeks. Why is it not flexible and why do we send patients so much that there is a difficult state between chemotherapy courses, both physically and psychologically? “Asked the woman.

At the Šiauliai Republican Hospital, patients mostly said that it is difficult to register with a doctor.

“At first I called the reception, I put a common queue to wait. After a month of no response, I called the treating doctor. He offered to register through the sergu.lt portal, so I registered. The problem with us in Šiauliai is that the registration procedure with the treating doctor often changes. It puts him in a common line, the treating doctor sets the time for the visit, and we don’t know at all when the doctor’s fines will be filed through sergu.lt, “said a woman aged 40 to 55 with cancer in stage 2.

The Panev Republicažys Republican Hospital patient certificate shows that patients are sent from one institution to another.

“I called the reception. He was ordered to call the family doctor and receive an electronic referral. From the third time I managed to call the family doctor. I received an E-Mail. Then I called the reception again, but it turned out that I couldn’t register because only a family doctor could do it. On the other hand, from the third time, I managed to call the doctor to register for a consultation. Then I called later to find out when an oncologist visit was scheduled. I spent three days registering and received a coupon a week later. Then an ultrasound was done the same day, “wrote a woman between 56 and 65 years with stage 1 cancer.

Half of the oncology patients who sought advice have not yet received it.

Summary data from the Pola survey showed that 3 out of 4 respondents sought oncology services during the quarantine period (i.e., from March 16 to May 31).

A third of all respondents received services from the National Cancer Institute, 28 percent – At Kaunas clinics, 12 percent. In Santara’s clinics, 10 percent. Klaipeda University Hospital, 4 percent. Šiauliai Republican Hospital, 3 percent. At the Panevėžys Republican Hospital, the remaining 9 percent. – in other medical institutions.

1. Half of the patients who requested a consultation for suspected cancer disease have not received a consultation so far (one third of them have not even registered for a consultation). A third of patients who requested continuous or prescription drug treatment have not yet received counseling.
3. Half of the patients received no consultation on disease control (progression) during the quarantine period, 40%. of these will be recorded for consultation only after the end of the quarantine.
4. 18 percent. patients do not receive prescribed chemotherapy during the quarantine period.
5. A third of patients do not receive prescribed radiation therapy (irradiation) during the quarantine period.
6. 37 percent. no surgery was performed during the patients’ quarantine period.
7. 42 percent. Radiological diagnostic tests (MRI, CT, X-ray, mammography) prescribed by patients were not performed during the quarantine period.
8. Diagnostic tests (ultrasound, endoscopy, colonoscopy, etc.) assigned to half of the patients were not performed during the quarantine period.
9. A third of the patients underwent blood tests during the quarantine period.
10. 44 percent. No biomarkers or genetic tests prescribed by patients were performed during the quarantine period.
11. 47 percent. patients did not undergo any other necessary procedures (eg, port change) during the quarantine period.
12. 47 percent. patients did not receive emergency care during the quarantine period due to deteriorating health.

“For oncology patients, services were provided on a smaller scale during the first week of the quarantine announcement (March 16-March 22) because they did not consider emergency medical care. March 23-May 3 Services were provided of oncology as emergency medical care. From May 4. The service resumed for scheduled operations and from May 11. – routine work of primary care centers, “said the patient association.

More than a fifth of oncology patients did not receive a consultation from a family doctor.

The survey showed 56 percent. During the oncology quarantine, patients sought other health care services that are unrelated to the treatment of cancer disease.

1. 68 percent. patients received a consultation with a family doctor in case of discomfort within 1-2 weeks after registration. However, 23 percent. Patient inquiries have not been received so far.
2. A quarter of the patients received a consultation with a specialist within 1-2 weeks after registration. However, 56 percent. patients received no specialized consultation during quarantine. Almost everyone was told to wait for the quarantine to end.
3. 46 percent. received patient procedures (ligatures, stoma changes, etc.) within 1-2 weeks after registration. However, the same number of patients (46%) did not receive procedures during the quarantine period. Almost everyone was told to wait for the quarantine to end.
4. A fifth of patients received dental services within 1-2 weeks after registration. But almost the rest – 72 percent. patients did not receive dental services during the quarantine period, most were told to wait until the end of the quarantine.
5. 76 percent. patients did not receive rehabilitation services during the quarantine period. Almost everyone was told to wait for the quarantine to end.

A fifth of patients took up to four hours to register

The survey sought to find out how the registration was at the treatment center.

53 percent. in order to receive the service itself called the medical institution. With 28 percent. the treatment center or treating physician contacted patients to reschedule the appointment. 13 percent registered for patient visit by email. forms through the sergu.lt or ipr.esveikata.lt portal. 6 percent Patient visits to the specialist were recorded by a family doctor, according to a survey.

2 out of 3 patients registered for the service in less than 30 minutes. 20 percent of patients took up to 4 hours to register and 12% of patients spent more than 4 hours registering.

Patients experienced a lot of uncertainty

POLA President Šarūnas Narbutas did not object in principle to the statement by Health Minister Aurelijus Veryga that oncology patient services were not stopped during quarantine.

“Here, looking at what you are comparing, if we compare that people did not receive other services, say, a planned consultation with a urologist, they were told: ‘wait, we did not register’. Oncology patients, as we can see in the procedure, they were able to register, only then was the decision of which patients to invite and how to make them be in the hands of medical institutions.

We see in the patient stories that some patients received services without problems: they were called by doctors or registered quickly, while others had to spend days days sending them: “go to the family doctor when you register with an oncologist”, then the doctor of family does not know how to register. Then a test on COVID-19 tells you to do it before you get there, maybe you should drive to do it in another city. There are many drawbacks. Yes, we can agree that the services were provided, but that they were provided to everyone, that was definitely not the case, “Š said. Narbutas

The head of the association representing patients stated that he understood why the scope of the services is less, because it is necessary to maintain distances and disinfect the facilities.

“But we are already talking about the times when patients arrive at the treatment center. Oh, most worrying is that the numbers we provide when comparing by treatment center show that they did not even register for the service. He said” we will register it for August, September. “

From the testimonies, we see that some received the services in an average of three weeks. This means that even if the patient would normally receive that service in the same week (because chemotherapy must be administered, radiation therapy must be performed) and they are now still enrolled in the next row. This means that the next visit has taken place again, ”Š said. Narbutas

According to him, the worst situation is when he is ordered to wait for the end of the quarantine. “This may be the case when a patient calls in mid-March and says ‘wait, we don’t provide services now, call later.’ He calls in mid-April and says, ‘No, we will not register yet, we will call later.'” Then they call again in May and they don’t register them again. There is great uncertainty on the part of a person who has an oncological disease and does not know when he will receive it. Patients cannot receive chemotherapy or radiotherapy somewhere in a private institution, because there simply are no private institutions that can provide that service, “Š said. Narbutas

Patient associations have heard of cases requiring patients to have blood tests or ultrasounds, radiological exams, and this has often been a barrier to not receiving service.

“We have seen in various stories that patients in public institutions are invited to consultations, but do not do the research, they receive them in private medical institutions, which also worked on a very small scale, but somehow were able to accept patients due to services paid. ” At that time, those patients could receive cancer consultations with the available tests, “Š said. Narbutas

The head of the association representing oncology patients does not rule out that the situation could have been even worse with other diseases.

“It just caught our eye then. And this illustrates the scale of the problem. It’s even more apparent when we talk about when patients seek non-cancer services. This is any patient, whether they have diabetes, cardiovascular disease, or some type of deterioration of health: heart failure, intestinal obstruction, we see what proportion of them (sixty, seventy, eighty percent) were not even registered for any service. end of quarantine, “Š said. Narbutas

Institutions would be encouraged to consider working longer

The president of POLA, not afraid of being unpopular with doctors, considered that, given the length of the queues, institutions should consider working longer, in two shifts or organizing work in other ways (for example, on weekends). to reduce queues during the summer.

“We could use the summer period to reach those patient flows that are not even registered now to receive those services, and in the fall we could move into the usual scope of services and terms,” ​​Š said. Narbutas

POLA has offered SAM and has discussed with IMI and Kaunas clinics, so that patients receive exams and consultations the same day.

“Typically, this was done by having the patient come in once for a blood test or ultrasound before an oncologist visit, and then say,” Wait for the results, come to the next visit. Still, if a radiological examination is needed, the patient also drives a second time. Oh, when you come to the consultation, if that medication is taken orally, just write a prescription to the person, and that’s it. If it is chemotherapy, radiotherapy, a procedure is prescribed. In such a scenario, we have at least three moments when the patient needs to drive separately to the treatment center.

Both IMI and Kaunas clinics, by looking, are trying to organize that work so that the visiting patient receives the examination, consultation and treatment the same day. This is very good for the patient, “said Š. Narbutas

The President of POLA listened to Mr. Veryga’s decision that, as of June 8, institutions that did not open until then would only be paid on the basis of the facts (without paying a twelfth).

“I would see that a workaround is possible. It is probably difficult to expect institutions, which work during normal business hours, to have to reduce patient times, when the consultation lasts longer (which is good for the patient), when the office needs to be disinfected, they have to change the protection measures to accept more than 70 percent.

Consequently, more could be paid to institutions that would achieve 70 percent of that. How does it work? Institutions are now regulated by service scores, which means that 1 euro is 1 point. If you gave him 100 percent. services (like last year), you get the same payment. But if you got that score of 1.3 or 1.35, you will get it even if you give 70 percent. services, you would receive the same payment, “said Š. Narbutas

At the same time, the President of POLA emphasized the importance of establishing quality standards for remote queries, as well as algorithms when it is safe to provide them.

“It just caught our eye then. If the doctor doesn’t see the patient while on the phone and doesn’t prescribe the tests, it’s just by intuition that he can’t really tell if the disease is under control, if the tumor is not growing and is not they are metastasizing.

These consultations are probably most appropriate simply by prescribing a prescription medication, but even then you should investigate to see if that medication is working, if the disease is not progressing, or if there are no other side effects. Consequently, these remote consultations are definitely not a panacea for all diseases, ”Š said. Narbutas

The situation is different from that of a year ago.

The National Cancer Institute (‘the IMI’) provided services to oncology patients throughout the quarantine period. Cancer, surgical, chemotherapeutic, or radiological treatment continued throughout the quarantine period.

During the two months of quarantine, 500 oncological pathology operations were performed at IMI, and almost 6,000 people visited the consulting polyclinic. patients, many consultations were by phone. Made more than 3 thousand. outpatient chemotherapy procedures and more than 4 thousand. outpatient radiotherapy procedures. The volume of services in some departments corresponded to the period prior to quarantine, while in other departments, such as Physical Medicine and Rehabilitation, it stopped entirely. However, the total volume of services remained around 60-70%. of the previous level of service, according to the response sent by the institution.

The examination and treatment of new patients with suspected oncological disease was also guaranteed. Patients were consulted remotely whenever possible, such as through scheduled prescription, long-term follow-up of patients with low risk of disease progression who have no new complaints, IMI said.

Meanwhile, as the head of the Polyclinic department IMI Consulting dr. Rasa Vansevičiūtė – Petkevičienė, after suspending the provision of primary and secondary care services in other medical institutions, many consultations were not possible, some patients were unable to go to a GP or specialist and receive a referral to IMI due to their complaints.

Since March 16. Some of the consultations had to be postponed at the Consulting Polyclinic, and efforts are currently underway to call patients with cancer diseases for whom the consultations have been postponed.

“Obviously, we can’t re-register patients as much as, for example, we registered a year ago, and we also need to be prepared for the second wave of COVID-19 in the fall, so patients register with longer breaks. between visits in the fall. “

It is important to mention that part of the patients who have been called or registered again, do not arrive at the appointed time, as a result, part of the consultation time is lost. This can occur for a variety of reasons, currently more often due to fear of visiting a hospital, the risk of COVID-19 infection, and other reasons: Patients are strongly encouraged to inform their treating physician if they plan not to attend. to a prescribed consultation or study. in advance, you can invite another patient, who really has a long time to wait, “said the head of the department.

IMI says it is working to the best of its abilities

When asked to comment on the situations described in the POLA survey, R. Vansevičiūtė – Petkevičienė emphasized that certain inconveniences are likely to continue into the New Year. As many treatment facilities in the country return to routine work at different rates, some still offer consultations mostly only remotely, it is natural that the number of consultations when the patient arrives directly is many times less than during non-quarantine.

“Of course, in oncology, remote consultation is often not an acceptable option, but at IMI we consult with a large number of patients compared to other institutions that provide medical consultations,” said the head of the IMI Consulting Polyclinic. – In the current situation, we try to do everything possible – we try to create direct conditions for direct consultations for patients who have a suspected or confirmed oncological disease or signs of disease progression for the first time.

It is also a priority for patients who are already receiving treatment and need palliative care consultation (in case of severe pain and other symptoms). The treating physician decides the need for a long-term follow-up visit (or remote consultation), since the risk depends not only on the stage of the disease and the age of the patient, but also on other factors such as the histological type of the tumor. , how long and how long the treatment was administered. complaints, when investigations were conducted and what was found, and so on.

According to all of them, the need to arrive is decided, especially for a planned visit. We always recommend that you first consult a general practitioner (GP), perform location examinations (ultrasound, X-ray, etc.). In the event of examination changes, the family doctor may contact the treating IMI doctor regarding the need for the visit, “said R. Vansevičiūtė – Petkevičienė.

He hopes that the gradual renewal of services will reduce anxiety.

Jolita Jakutienė, Deputy Medical Director of Outpatient Work and Diagnosis at the Santara Clinics, reported on the provision of services during the quarantine.

“Without question, the restriction of scheduled services during the quarantine period and the introduction of strict infection control requirements have caused some inconvenience for both medical institutions and patients whose visit to the doctor was planned at the time. However, Santara’s clinics have always considered it a priority to provide the necessary services to those who may have been affected by the disease (including those suffering from oncological diseases), therefore efforts were made to receive patients as quickly as possible. and best possible, ”said J. Jakutienė.

A spokeswoman for the clinics hoped that as the quarantine conditions eased and the hospital gradually phased out, more and more scheduled services would reduce patient anxiety.

“Doctors would be very grateful to patient organizations that are working with us to help patients and their families survive this difficult period for both parties in the best possible way,” said J. Jakutienė.

During a live conference, a spokeswoman for Santara Clinics said that outpatient services at this treatment center had never been interrupted, but were provided throughout the quarantine.

“There were remote consultations, but we also had many contact consultations. We continued treatment for cancer patients, we consulted pregnant women, transplant patients. Of course, some of the services that could have been delayed were delayed. These include all the rehabilitation services outpatient, ”said J. Jakutienė.

According to the representative of the clinics, during the quarantine the working hours of doctors from all specialties were prepared, trying to organize visits in such a way that patients had the least possible contact. He assured that patients at risk are not discriminated.

“Las personas sanas no se aplican a la Clínica Consultiva Policlínica de Santara. Las personas con enfermedades crónicas esperan la consulta con nuestros médicos, por lo que no diferenciamos a este grupo de pacientes según la edad, la presencia de comorbilidades o los medicamentos utilizados. Cada paciente es tratado por igual, descubrimos si hay signos de infección viral aguda y los pacientes que no tienen signos agudos de enfermedad infecciosa viral son ingresados ​​en la clínica.

Por favor usa una máscara. Si lo acompaña una persona, tampoco debe mostrar signos de infección y usar una máscara. Pedimos que haya escoltas solo cuando sea necesario, y no más de una persona ”, dijo J. Jakutienė.

Delfi también solicitó comentarios a las clínicas de Kaunas y al Ministerio de Salud. Cuando los recibamos, completaremos el texto.