Patient organisations the voice of the sick. Episode 23

Monika Rachtan:
Did you know that in 2022, Poles will have forgotten to cancel 17 million doctor's appointments? Did you know that our country has a hotline at the Patient Ombudsman where you can report broken patient rights? Did you know that there are patient organisations in Poland? They are active entities that advise the Sejm and the Senate and have a real impact on the situation of patients in the country. We will talk about this and many other topics in the next episode of the programme "Patient First" with my guest today, Igor Grześek, Vice President of the Institute for Patient Rights and Health Education. I invite you to listen to my programme. Good morning, I am Monika Rachtan, and I welcome you to another episode of the programme 'Patient First'. You are 45 years old, you are a healthy person and there is nothing wrong with you. Great, congratulations! But in 15 years you will be 60 years old, and then age-specific diseases such as hypertension, COPD, type two diabetes or heart problems may appear. We often blame ourselves or our loved ones for these diseases. But what would you say to seek help from a patient organisation?

Monika Rachtan:
Have you ever wondered what such a patient organisation does? If you don't know, my guest today, Igor, Vice President of the Institute for Patients' Rights and Health Education, a partner in this programme, will try to explain.

Igor Grzesiak:
Good morning, ladies and gentlemen, welcome.

Monika Rachtan:
Could we find out more about what these patient organisations are doing?

Igor Grzesiak:
Of course, I hope to introduce this topic, as it is not obvious to most Poles. Patients' organisations are part of non-governmental organisations that focus on different areas, such as health care, animal rights, the environment or civil rights. However, this segment of health care is by no means small. There are large organisations in this segment, such as the GOCC, which are familiar to most listeners. However, among these healthcare organisations there is a segment of patient organisations. These are known as patient active groups, i.e. organisations that work on behalf of patients. These organisations have existed for more than 30 years and have contributed to improving the situation of patients in Poland. For example, the Federation of Amazons has been active for three decades and covers the whole of Poland. It is an excellent example of a patient organisation that was established for the benefit of patients and has worked from the very beginning.

Monika Rachtan:
So these organisations are trying to help each other and solve problems, yes?

Igor Grzesiak:
Yes, this is true. These are often people who have experienced health problems themselves and have decided to act to help others. For example, the Urszula Jaworska Foundation is one such example. Ula Jaworska is known for her commitment and has been active for almost 30 years. She is the person who underwent the first bone marrow transplant in Poland and has been actively working for patients ever since. These are typical paths followed by people who want to be active. Often these people were patients themselves and, seeking information about their disease, diagnosis and treatment, found support in patient organisations. In the past, such information was not always available, nor were the modern medical technologies that we have now. Today we say that cancer is not a sentence, but a disease that can be treated. Patient organisations play an important role in this change of thinking.

Monika Rachtan:
I have recently seen that representatives of patient organisations are participating in discussions in the Sejm when preparing new legislation. They are also trying to take into account the patient's perspective and not just the experts'. This is already standard today, isn't it?

Igor Grzesiak:
Yes, this is very important and it is already the standard today. We are talking about patient-centred medicine, and representatives of patient organisations are involved in this discussion.

Monika Rachtan:
But what will the ordinary patient feel when standing in a long queue to see a cardiologist for 5 hours? Can patient organisation help reduce waiting times? These are questions that bother many patients when they face problems in the healthcare system. We talk about legislation and campaigns, but a 70-year-old patient may feel left out because he or she is still standing in a long queue.

Igor Grzesiak:
I understand these concerns. Unfortunately, many patients experience this. We receive dozens of calls from patients trying to get help in these situations. However, our work as a patient organisation is not about direct action to reduce waiting times. Our aim is to influence the healthcare system and make patients feel more secure. One of our successes was the co-authorship of the Patient Ombudsman Act, which is fundamental to patients' rights in Poland. Patients' organisations are playing an increasingly important role in shaping the country's healthcare system.

Monika Rachtan:
Do patients actually feel the impact?

Igor Grzesiak:
Yes, although this is not always visible to patients. The actions of patient organisations often have long-term effects that can be seen in the future. For example, a patient with a rare disease can now benefit from medicines that were previously not available, thanks to the efforts of these organisations. However, the patient himself, while waiting in the queue, may not see immediate changes. We know that the health care system in Poland has many imperfections, and we are trying to change them. Our work is to strive to treat the patient more like a partner in the treatment process than just an object.
In Poland we often seem to complain about the state of health care. Perhaps you can give me examples? You receive various information from patients as the Institute for Patients' Rights and Health Education. I also read comments on your social media. When you are trying to educate and create materials for patients, I notice comments that, excuse the expression, seem to criticise your work. Patients seem to be very unhappy and critical, even though we are trying to work for their benefit. Do you think this is typical of Poles - complaining about the health service even though they don't cancel appointments? There has been a lot of talk about this recently.

Igor Grzesiak:
I rather not try to explain this behaviour. It probably stems from a certain frustration. In the beginning, I tried to directly discuss with people who tried to express their dissatisfaction towards our activities, which aim to educate patients and promote preventive health care. We continue to do so. Of course, when information reaches the people concerned, it is received positively, but sometimes there is also criticism. Unfortunately, the heckling is increasing, especially on the social media where we operate, such as Facebook and Twitter.

Igor Grzesiak:
It is worth emphasising that patients, despite their rights, also have responsibilities. I know that not everyone agrees with this, claiming that they pay taxes and contributions to health care and then cannot get quick access to specialists. This often leads to frustration, but let's remember that we all contribute to the system. We do not wish anyone to have to use it, but if it is already necessary, it is worth understanding that there are some limitations and problems arising from both patients and the system.

Igor Grzesiak:
Often patients do not cancel appointments, which can be a problem. Today, we are campaigning for patients to cancel appointments rather than blocking them. Referrals and accessibility to specialists can be hampered by patients' inappropriate actions. There was also the practice of signing up for multiple specialists as a back-up, which is now hampered by IT systems. You have to provide a referral and get out of the queue, which could lead to excessive waits.

Igor Grzesiak:
There are also pathologies in the system that result from its malfunctioning. If a patient has a referral to a dermatologist and not to a specific specialist, they have to visit their GP, who will issue a referral. Of course, there is also a list of specialists you can go to without a referral, such as a psychiatrist, oncologist, dentist and gynaecologist. However, this list is limited, so most patients have to consult their GP first.

Monika Rachtan:
Are there any specialists that patients actually go to on the National Health Service? I'm sorry, but I don't know anyone who uses the NFZ for dental appointments.

Igor Grzesiak:
It used to be that very few patients actually chose to see a dentist on the National Health Service. But perhaps the situation is changing. I won't speculate on that.

Monika Rachtan:
I understand, thank you for the clarification.

Igor Grzesiak:
No problem. You can go to the dentist without a referral, as can the gynaecologist and obstetrician. However, the options are few, so you first go to your GP, who can give you a referral if necessary. That is his or her role.

Monika Rachtan:
But then the patient often has to wait a long time to see a specialist, which is frustrating for both patients and doctors. This is not the fault of the doctors, but are there any changes planned in the system that could help solve these problems?

Igor Grzesiak:
I hope so. We will certainly work on this, as we receive many complaints from patients about these problems. We have already discussed this at the Council of Patient Organisations at the Ministry of Health. We want to improve this situation and create mechanisms for joint trust between payer and provider so that patients do not lose out. The patient comes first.

Monika Rachtan:
Exactly, it is important to understand that the quantity of treatments is not the most important thing, but the quality of care. Often health professionals have no control over how many treatments are performed.

Igor Grzesiak:
Yes, I agree. We will work on this and we also encourage anyone with similar issues to report them to us.
Monika Rachtan
To encourage patients to actually write to you, you can say that you don't want to boast about your successes, but you will definitely find something you have achieved recently. What in particular have you worked for? And what real significance does this have in the lives of patients? Does anything like this come to mind from recent times?

Igor Grzesiak
In terms of what we do, it is about supporting other patient organisations. We are a formal federation of patient organisations and we try to advocate for the welfare of patients through other organisations. Recently, we have achieved several successes that indirectly result from our work. One of these is the establishment of the Endometriosis Team at the Ministry of Health.

Monika Rachtan
What exactly does this team do?

Igor Grzesiak
The team aims to develop principles for the management, diagnosis, treatment of endometriosis in Poland, which has previously been neglected.

Monika Rachtan
No one has dealt with that, have they?

Igor Grzesiak
Exactly. There was a lack of clear leadership on this issue.

Monika Rachtan
And medical facilities for the treatment of endometriosis?

Igor Grzesiak
The team is currently still working on these issues. I am not a member myself, so I do not know all the details. But I encourage you to invite Professor Bilinski, who is a member of the team. He will certainly have more information.

Monika Rachtan
Many women suffer from endometriosis and seek help from various specialists, who are often unable to offer it. Sometimes this is not due to their reluctance, but rather a lack of adequate support from the system. Doctors also complain about the state of the health service, claiming that procedures are inadequate and that education in our country does not meet their expectations. They claim that there is a shortage of doctors and that the system does not allow for many things. Do you think these problems that doctors and health professionals talk about are real?

Igor Grzesiak
Of course, these problems are real. We all work together to create this system and we always emphasise that the patient is the foundation of the entire healthcare system. Without patients there would be no need for doctors, and without doctors there would be no one to provide healthcare services. We have discussions about this many times, but it is a joint effort. Unfortunately, there is often a conflict of interest between the medical community and patients. We work together with doctors, although we see some issues differently. We are the recipients of the healthcare system, while doctors are its employees. This is an important difference. This also applies to the issue of remuneration. It is good that Poland has managed to regulate this issue, at least as far as doctors and nurses are concerned. It is worth remembering that other professionals, such as paramedics, physiotherapists and laboratory diagnosticians, also work in the health service.
Monika Rachtan:
We are always pitted against each other.

Igor Grzesiak:
Unfortunately, we very often experience attempts to divide the medical community and patients. However, we work with doctors. We understand that we look at certain issues differently from them. We are the recipients of the system and doctors are the employees of the system. This is a key difference. As for salaries, we are happy that the issue of money for doctors and nurses has been resolved. However, other groups such as paramedics, physiotherapists and laboratory diagnosticians should not be forgotten.

Monika Rachtan:
Recently, clinicians involved in the treatment of oncology patients have pointed out that the problem may not be the increase in cancer cases, but the lack of diagnosticians to diagnose these cases. The average age of laboratory diagnosticians is over 60, and there is a shortage of people willing to do the job due to the difficulty of the studies and low salaries.

Igor Grzesiak:
Unfortunately, pay has still not passed reform. They talk about the challenges of doctors, who often have to work multiple jobs, not because they want to, but because there are not enough doctors. However, they do not abandon patients, as many of them put patients first. The organisation of work needs to be improved, for example medical assistants could take care of the formalities so that the doctor can focus on the patients. The Kids Foundation conducted a survey in children's hospitals and the biggest problem was found to be work organisation and administrative overload.

Igor Grzesiak:
When assessing the functioning of children's hospitals, patients and parents point out the good infrastructure, but also the age of the medical staff. The average age of diagnosticians is too high, as is the age of GPs. We have difficulties finding people willing to work in many specialities.

Igor Grzesiak:
Doctors complain about the education system, but it is worth pointing out that our doctors are among the best specialists in Europe and perhaps the world. Our teaching system is of a high standard, but the increase in the number of places in medical studies has introduced some uncertainty about the quality of education. The universities that open these courses do not always have the necessary facilities and simulation centres for students. Therefore, we need to act now.

Monika Rachtan:
So we stay with the status quo, yes?

Igor Grzesiak:
No, we cannot leave it as it is. Otherwise there will be a shortage of doctors to treat patients.

Monika Rachtan:
However, I reflect on what you said about the doctor training system, that doctors by 2022 were happy with the way it looked. However, I also hear feedback from young doctors who use tablets and mobiles. They claim that the huge amount of theory they receive is unnecessary, because after their first independent duty they have to deal with situations that they did not find in books, even though they have gained knowledge in other areas. Doctors complain about the lack of practical knowledge and too little time spent in hospitals or clinics. Even if they are there, they deal with medical records or other tasks, but rarely see patients. I think the new universities can train practising doctors who can work in provincial hospitals, dealing with less complicated patient cases. If necessary, they can refer them to specialists who have received their education at medical universities or in larger cities where access to a prosectorium is available. Many people are concerned that the lack of a prosectorium may hinder the education of doctors.

Igor Grzesiak:
Do you think I am getting to the heart of the matter? After all, not everyone who now chooses these new universities and courses starts their education in the same way. First of all, they have to graduate from these universities, but not everyone will be accepted for an internship or residency. The number of GPs will also increase. As President Jankowski mentioned, they can be treated as 'almost doctors'. Ultimately, the market will judge the quality of education. There has been a lot of talk recently about quality, and I believe that during these ten years of education, from graduation through internship and residency, quality will play a key role. As with the legal profession, not all graduates will become judges, prosecutors or lawyers.

Igor Grzesiak:
Are these people really suitable for certain professions? In the case of doctors, the person must meet not only the theoretical requirements, but also the ethical requirements and show empathy towards patients. The labour market will have to assess this.

Monika Rachtan:
The market is the best place for verification, because we are the ones who later judge whether we are dealing with good doctors or not. However, the fact that someone has graduated, as you mentioned, does not guarantee success in practice. If someone graduates in cosmetology, for example, it doesn't automatically mean that they will be an excellent cosmetologist who will build lasting relationships with clients. Perhaps this person will choose to work for a pharmaceutical or biotechnology company where they will create cosmetics. This too is a noble path. The same is true for doctors.

Igor Grzesiak:
Exactly, I have this impression that currently some academic courses that require students to travel distances of at least 200-250 kilometres can be questionable. There have been cases where students have had to travel that far to attend classes, which is clearly absurd. However, it is worth noting that in recent years, new faculties have been created at universities that were not previously associated with medicine, such as the University of Zielona Góra, where a medical faculty was launched at the Collegium Medicum. Graduates of this programme, who completed the entire course of study, achieved second place in Poland in terms of exam results. Therefore, if there is adequate teaching staff support and preparation, students will successfully pass their examinations. Of course, we currently have some worrying trends in some locations, but I hope we will observe this and respond on an ongoing basis. We cannot allow situations where a doctor completes an extremely short online course, this is absolutely unacceptable.

Monika Rachtan:
Are patients' rights being violated in Poland?

Igor Grzesiak:
Unfortunately, yes, they are broken.

Monika Rachtan:
What rights does the patient have? How can a patient know if their rights are being violated?

Igor Grzesiak:
This is a very good question. Our organisation is called the 'Institute for Patients' Rights and Health Education' with the specific aim of promoting patients' rights in Poland. We often hear from patients that they do not know their rights, although such rights exist. In 2009, the law on the Ombudsman for Patients' Rights and Patients' Rights was passed. This has been a long time coming, but according to our research, including that of the Ombudsman for Patients' Rights and Professor Zbigniew Izdebski, only about 30% of the public know their rights. That's interesting, isn't it? We recently conducted a study which confirmed that only 29% of those surveyed know their rights.

Monika Rachtan:
But perhaps they at least declare that they know their rights and will check if necessary?

Igor Grzesiak:
If they declare that they know, then yes, they declare. But it is interesting. About 55% people know where to report when their rights are violated.

Monika Rachtan:
In Poland we are probably well prepared?

Igor Grzesiak:
Yes, very good. We have a Patient Ombudsman's Office that runs a free helpline for patients. We always encourage patients to report any situation that concerns them to the Patient Ombudsman's Office.

Monika Rachtan:
Have you ever tried to call this helpline? Were you able to get through?

Igor Grzesiak:
Yes, I tried. It is possible to call there. It is a people-operated helpline. I called several times.

Monika Rachtan:
OK, so you have reached Ms Kasia, and Ms Kasia has answered the phone. How does that work next?

Igor Grzesiak:
Good helpline. My doctor refused to refer me to a gastroenterologist even though I had symptoms. Later, another doctor said I had stomach ulcers or something similar. This means that the first doctor violated my rights because he did not give me a referral. What does this Mrs Kasia do now? She records this information and passes it on to the Patient Ombudsman. What is the further path of this information?

Igor Grzesiak:
I think it is worth inviting a representative from the Patient Ombudsman to explain to patients how to use the helpline and the compensation fund. Now there is another compensation fund for clinical trial patients, there is a vaccination competence fund, and soon there will be an event compensation fund. These are tools that allow a patient to obtain compensation without the need for complicated court procedures. If there has been an incident, an application can be made. It costs £300, but in justified cases, if the patient is unable to pay, the fee can be waived. The application is assessed by experts associated with the fund in question. If successful, the patient recovers PLN 300 and receives compensation, which depends on the circumstances.

Igor Grzesiak:
However, this does not mean that the patient cannot further assert his or her rights. This is a quick way to get compensation from the health system for the harm suffered. If we talk about the funds and the helpline, the patient is often given information on the next steps to take, whether it is a National Health Fund issue or a breach of patient rights. We have cases where patients call us with confusing situations because the name of our organisation is similar to the Office of the Patient Ombudsman. This is an example of such a situation that raises my concerns. For example, if I was given an injection or had blood drawn and then had a stroke. Now I have to get compensation. Is this a violation of patient rights?
Monika Rachtan
Because that is what I wanted to ask you about, examples of such violations of patient rights.

Igor Grzesiak
Often, very often, patients call with various complaints, and indeed a large part of their dissatisfaction is probably due to the lack of expected help in a particular situation. Unfortunately, the catalogue of patient rights is severely limited and does not cover all aspects of healthcare. Nevertheless, the helpline can provide the patient with information on the options available, although we are not always able to do anything about it. The Ombudsman should certainly be informed about such situations, as he can intervene and impose a fine of, for example, PLN 500 000 on the medical facility. At least that is what I think.

Monika Rachtan
It is a pity that these costs are borne by the public when it is funded from our taxes. It's a bit of a paradox.

Igor Grzesiak
It depends. If the facility is private, it is not funded by our taxes, but if it is public, run by the local government or the county, then yes, then we all bear the costs. It's also about education on the subject.

Monika Rachtan
Well, that's because it's probably better after all.

Igor Grzesiak
Yes, better.

Monika Rachtan
Better.

Igor Grzesiak
Yes, but as I say, if these issues are not reported to the Ombudsman, it is difficult to expect any improvement. There was a pandemic, and now we have other problems. I am thinking, for example, of the situation when a person sent us a photo from a clinic with a message that patients without masks would not be served. Apart from the form of the message, patients are often referred to as customers. This is an issue that concerned us and we decided to report it to the Patient Ombudsman. After a few days, the card simply disappeared.

Monika Rachtan
This shows that the Ombudsman works effectively, as long as people choose to respond. However, I would like to stay with examples, because you said that often patients report situations that are not violations of patients' rights. What are the most common violations of these rights in Poland? Apart from the issue of masks, how do you see it?

Igor Grzesiak
I think that here it would be best to talk to a representative of the Patient Ombudsman, as they have the most accurate information on this subject. Every year they produce a report on the activities of the Office of the Patient Ombudsman, in which they accurately present the number of complaints, interventions and the type of violations of patients' rights, referring to specific articles of the Act. For example, the NIK report mentioned violations of Article 20 of the Patients' Rights Act, which states that the dignity and intimacy of the patient is to be respected, especially in psychiatric hospitals. This is unfortunately a common occurrence. Nevertheless, these situations vary and cover many aspects of healthcare. They include inadequate communication, the behaviour of medical staff and problems with appointments. Often patients are unable to communicate with the clinic, which is frustrating.

Igor Grzesiak
We also talk about cancelled appointments, but sometimes there is simply no way to cancel an appointment if we cannot get through.

Monika Rachtan
I call for three days and cannot get through. To register, I also have to call for three days, which is very inconvenient.

Igor Grzesiak
I myself experienced such a situation that I tried for three days to get through, and on the third day I found that this was the last time I was trying.

Monika Rachtan
As far as the Patient Ombudsman is concerned, we will try to invite him to the programme to answer those questions that are now difficult to find answers to. We want our listeners to have access to the most reliable information possible.
Igor Grzesiak
I simply do not wish to mislead anyone. There is a special office, the Patient Ombudsman, which has been set up for this purpose and has the competence to deal with these issues in the best way possible. It seems to me that the most important thing is to provide clear and transparent information.
Monika Rachtan
Today we complain a bit about the health service, especially the one we all pay for. I would like to ask you a question I read on a patient forum. It may seem like a complaining question, but a lady wrote that she doesn't understand why her doctor, who works at the county hospital, doesn't have time for her. The visit lasts only 5 minutes and she feels neglected. On the other hand, when she goes privately to see a doctor in a beautiful clinic with biscuits on the table, it is a completely different story. You said that today healthcare in Poland is not so focused on money. So why is there such a big difference between private care and that funded by the National Health Fund?

Igor Grzesiak
No, I don't want to argue any further. Unfortunately, money does matter. While we are talking about problems in the functioning of the medical staff that have been reported over the years, there is no denying that finances always play a key role. Currently, we only invest 7% of GDP in our healthcare system. The National Health Service (NHF) has an annual budget of PLN 160 billion, which covers the costs of medicines, sanatoriums, spas, medical staff salaries and other benefits, including medical devices that we use, although we often do not realise it.

Monika Rachtan
True, medical devices are often underestimated. Could you elaborate on this?

Igor Grzesiak
Of course, there are many different medical devices that are partly financed by our health contributions. Unfortunately, many patients do not realise, for example, that glasses are also a medical device.

Monika Rachtan
This is interesting. Are there any other differences between the public and private systems worth mentioning?

Igor Grzesiak
Yes, it is worth pointing out that we now have two parallel systems: public and private. Some people enjoy private benefits obtained at work, such as cards for the various networks. However, it is worth pointing out that the private system has its drawbacks, including a large number of subscriptions, which often leads to long queues. There is also a group of patients who would like to use private services but encounter delays. This is not always as we would imagine. You often have to wait several weeks for an appointment, even in private clinics if you use subscriptions. It is worth noting that accessibility to healthcare in Poland varies from region to region.

Monika Rachtan
Are there any sources of information on accessibility to doctors and waiting times?

Igor Grzesiak
Yes, there are websites where you can check the availability of doctors and expected waiting times. Unfortunately, these are not always up-to-date and registrars are sometimes reluctant to provide information, claiming that they are not official. However, some medical facilities report this data, which allows patients to have some information.
Monika Rachtan
They often treat patients badly. It either works or they don't report.

Igor Grzesiak
It works, it is a simple matter. We discussed this at a meeting with the National Health Fund, where we raised the issue of queues. However, the National Health Fund said that unfortunately it does not have the tools to force providers to report the actual status of the queues.

Monika Rachtan
How about the idea of all clinics running on one IT system?

Igor Grzesiak
This is another important topic that should be regulated. The quality of health services should be linked to reporting to such a system. It is important to monitor the number of patients in the queue and to eliminate the IT barriers that currently exist. This needs to be regulated once and for all.

Monika Rachtan
Our conversation is coming to a close. Although I had questions prepared, we went in a completely different direction. I would now like you to summarise the three most important things that our listeners should remember from our talk. Three key points.

Igor Grzesiak
This question surprised me, but I am convinced that there are more important issues than the ones we have discussed. Dear listeners, remember to take care of your health and prevention. It is a good idea to ask your GP for a referral for a preventive check-up, it is your right. Secondly, remember your rights as a patient. There is a law that protects you and various funds that you should take advantage of. There is also a Patient Ombudsman helpline where you can report your problems and healthcare issues. Thirdly, be aware of the queues and try, if possible, to cancel scheduled appointments so as not to create additional problems with access to medical services.

Monika Rachtan
It is important that we are a civil society and think of each other in the healthcare system. Humanising medicine means taking a holistic approach to the patient as a human being. Thank you for your participation in the programme and the Institute's commitment to this important project.