Leaders’ patients and other human rights’ defenders who apply for medical service decided to unite. It was the most important question during the round table discussion and the previous seminar. And I decided to ask Irina this question.
- I think there are a lot of people in Ukraine who will do that when we’re talking about illness and its incorrect treatment. Unfortunately the world’s treatment standards of myasthenia are not used in Ukraine. We are left behind other countries for about 30 years. And even Russia or Belarus are in advance. I was treated incorrect since 1996. During the last 5 years from the healthy girl I turned into the invalid in a carriage. And only in 2000 doctors diagnosed me right and I’ve been receiving the necessary treatment. There is a very small group of those who devoted themselves to the volunteer’s work under the leaders’ patients program. I hope a membership of the group will increase when others learn more about us in the country.
- You have suffered from a medical mistake. What is necessary to do to avoid such mistakes?
- At first I felt bitterness and hurt. I wanted to punish and imprisoned the guilty! It must be a lesson for others. Then was a difficult way of acceptance of what had happened. From the resentment to the understanding. There’s not only one doctor’s mistake. Doctors had made a lot of mistakes which led to the fatal result in my situation. There won’t be experts at the hospitals if we judge the guilty. Unfortunately the problem is not the specific doctors.
- Then what or where is the problem?
- The problem is at the public health service where doctors’ mistakes are not exception and medical harm is hiding. The doctor is also a human. They want to see people healthy instead of invalids. But they are mistaken as we are. We have to help the doctor to understand that his mistake is not a doomsday or a stamp for the whole life. The problem is that the doctors’ mistakes are hidden over and over again.
- Did you forgive those doctors by whose fault you became the invalid?
- I came to the hospital where my misfortune had happened as the volunteer to the oncohaematology centre. First it was difficult for me to work with the doctors even to look at them. I had to met them al the time. I still believed they could prevent mistakes diagnosing me. But we had what we had. I must live, find a compromise, help those who need help. And then I decided to organize an Internet site where sick people can find information, find out that my example is an exception and they can avoid it. Patients have to do something, not only to accuse the doctors. This is one of the ways to change the system. Only those who felt the system harm and know the doctors’ mistake price themselves understand the necessity of the reforms in the public health service.
- Do you think that your volunteer work helps patients, reduces their sufferings, inevitable harm during the treatment and from doctors’ mistakes?
- I self-actualize when I come to the centre and ask what equipment they need. Then I’m looking for the sponsors, get equipment to the hospital. Instead I ask the children’s documents who need the treatment abroad. Doctors can see my real help not only my requirements. This cooperation had changed attitudes to each other. First doctors don’t want me taking the documents and consulting elsewhere. It looks like we don’t trust them. Now we don’t have any problems. Also we’re trying to prevent the doctors’ mistakes from the very beginning. We have equipment which allows to increase the patients’ survival rate. It seems to me that a death rate has decreased during the last nine months I’ve been working in the centre. It has a lot.
