I’m 71 years old. Until recently, I have always been healthy. I have benefited from the Norwegian welfare state. The loan fund ensured that I had the opportunity to obtain a university education. I have always thought that the community health service would provide me with the necessary help should the need arise. I have paid my taxes, if not with great pleasure, then with a sure assurance that money and services will be distributed in a fair way. I have always worked in the specialist health service in hospitals. And I have always been convinced that a strong public health service is for the benefit of the population – even though I have sometimes cheered on private health actors when they have quickly found new solutions to old problems. But now I myself have become seriously ill. I am no longer the one to represent the hospital and ensure that the patient is met in a good way. The one who will ensure good diagnostics, treatment, and not least, good follow-up. I’ve changed sides. Now it’s me who depends on being met in a good way. I have now tried the patient role for 6 months. The first phase, where my rights are described through the package process, worked wonderfully. It took less than 5 weeks from the time I consulted my GP until my cancer was diagnosed and the tumor was completely irradiated. In the second phase, the follow-up, my experiences are of such a nature that I have to tell about it. I went for an X-ray more than 4 weeks ago. The staff at the X-ray department know if I still have cancer or not. But even I do not know the answer. If I ask the department that has treated me for an answer, they say that I must see my GP to know the answer. And my GP says he has not received an answer. For me, in addition to being sent in a circle between the various treatment agencies, it is mentally challenging not to know if my cancer is gone, or if the cancer has spread to other parts of the body. Spread to the brain is most common. The reason this information is not available to me, I have been told, is the lack of radiologists at the hospital. The X-rays are available in the cloud and can be downloaded anywhere. Why then does my hospital not ask for help from another hospital? The resources should be organized as a network, not as closed houses with departments. The specialists who sit in Oslo should be able to help the patient who sits in Bodø. In this way, patients will be able to get a better offer. At the risk of getting lost in an ongoing ideological discussion, I will be careful not to suggest that private X-ray institutes may be invited as a supporter when there is a lack of public capacity. But maybe it could have been a good idea anyway. If I had access to my own photos, I could, for example, send these for diagnostics at the TMC center in Barcelona. But must a bureaucrat forbid me to have access to my own X-rays. In addition to the mental, it has been physically difficult because I have constant shortness of breath. I have too little air to walk on flat ground, and I get out of breath from talking. My request for supervision at the pulmonary ward was rejected with a message to see my GP. The GP referred me back to the hospital. This process took 10 weeks. The GP was unnecessarily burdened, and I was given a longer waiting time to receive treatment. According to the Norwegian Directorate of Health’s national guidelines, cancer patients must be followed up and checked at the wards that have carried out the treatment. This has not happened in my case. I was put on hold. Maybe even forgotten. I can not find anyone who can tell me if I have, or do not have, cancer. Or to discuss the further treatment and control scheme for me. As a patient, it is difficult to understand that the specialist health service has made itself so inaccessible. They have built a wall around them. Just try to find a doctor on the hospital’s website. Try calling the hospital’s switchboard and asking to speak to Dr. Problem Solver. Or try writing an email and tell them you need contact. I doubt you’ll get anywhere. At least I did not. The Norwegian hospital directors encourage their employees to send non-conformance reports when something is not as it should be. Good, but a system should be created so that patients can also send non-conformance reports. Then there is this with data security and privacy. As a private person, I can send what I want to whoever I want by e-mail. When there is a need for me to send a message to the hospital that I am not allowed to breathe, however, this is forbidden. I get feedback from the specialist that this “asks for respect that I can not communicate your case by e-mail”. But when I sit and slowly suffocate, computer security and privacy are in about 149th place on my priority list. I have begun to doubt my faithful ideological companion. Belief in the good, just public health care system. When I have needed it the most, the health care system has appeared inaccessible and impenetrable. Instead of following the Norwegian Directorate of Health’s national guidelines for the control of cancer patients, I have experienced that the specialist health service burdens my GP with tasks that GPs should not have. Lack of compliance by hospitals on national guidelines from the Norwegian Directorate of Health is a well-known issue in the health service. It is known that quantity gives quality. Nevertheless, it is hospitals that will do it “in their own way”. I’ve been looking for channels to tell my story. Tell my colleagues how they can meet patients in a better way, but I have not found the opening. One thing I have been absolutely sure of, at least I should not go to the media! So why do I do it anyway? I’m not afraid to die, but I’m afraid of the death process. I’m afraid of pain. It scares me, based on my experience, that I have begun to doubt whether I can trust that a state-of-the-art university hospital meets my needs when I need it most.
ttn-69
The power of health care – Expression
