I wonder if I want too much. I want a doctor who knows me well and takes care of me. Who is interested, curious, ambitious, inventive, a doer. When I was still working, I also looked up many times how often a newsletter I designed was opened, where it was clicked a lot and where little, how much turnover it generated. I think doctors have a well deserved private life, but I would like to have one Doctor for which I am like his sister.
Good neurologists have many patients, the legal regulations allow a medical consultation to be measured in minutes. On average a German doctor has 8 minutes for a patient, in the USA it is 20 minutes.
Source: https://bmjopen.bmj.com/content/7/10/e017902
Then I come with my multysistematrophy and completely blast this frame.
I can remember the day when I was told my diagnosis. I knew there was something wrong with me, but I went to the hospital completely unknowing. I was in the hospital for three days for an examination and then I was allowed to make an appointment later on at the “Department for Movement Disorders”. I thought we were doing some exercises and it was good. I was the first patient, was very early in the morning and I was early and so waited patiently. Shortly afterwards the doctor of the ambulance came, I have never seen her before and she has not seen me either. There came a lady in a jacket with a bag, greeted me WITH MY NAME!, said something like “won’t last long” and disappeared behind the door, I assumed that she my doctor was because her name was on the door.
Shortly after, the assistant medical director came from the department where I was two months ago and greeted me by name as well! That he remembers me! I was already amazed and had a little wow effect… “Super hospital, they know patients by name!“ And this is not a provincial hospital, one of the most renowned establishments of this kind in Munich. At that time I didn’t know that I was a kind of VIP with this disease.
I differentiate between doctors, neurologists and researchers. And you need every kind of them.
My GP, who orders my prescriptions and aids. He writes a certificate if necessary. My neurologist, she examines me, notices changes, recommends symptom alleviating medication, writes certificates too if necessary, recommends specialists. And there are also the researchers, who have the most well-known tips and tricks, know studies, interpret symptoms best – but they only often see the disease in me and not the human being, the individual.
For most doctors, we are not the most desired patients. Because many doctors just want this “experience of success” – patient has pain > prescribing what > patient no longer has pain. They have helped! Unfortunately they do not have this luck with us. Hardly any doctor likes to say I’m sorry, I have nothing that could help.
However, we have to be behind ourself. Neurologists don’t know studies, for example – a patient friend of mine was told in hospital that if a drug appears they will will prescribe it immediately. I don’t know if they know that we die three times until they find a drug, allow it freely on the market, and they get wind of it!
I’ve been writing and telephoning after a researcher for 6 weeks now, because of a study… I don’t think they realize that my life can depend on it.
It’s all very frustrating, sometimes I wish I was taken by the hand like a child and I could trust that we are already making the most of the possibilities.
Photo: obeylessin / photocase.com