A year and a half after my move, I have finally started the process of transferring my medical file from Paris to Bordeaux. Today I want to share with you the first steps of this change.
Why did it take me so long to do this? I think I wanted to make sure I would stay in Bordeaux. So I thought that if I moved again in the next few months, it would not be worth it to start the procedures.
First step:
It was last July, during my last check-up. I told the Professor who had been treating me since the beginning of my infection about the situation. She referred me to a particular hospital and gave me the name of a Professor to contact. She noted in my file that I wished to transfer it to Bordeaux so that when the transfer order was issued, there would be a trace of its "validation" so that it could be carried out.
I want to come back to this moment that I have already mentioned in a previous story.
The Professor has been with me for over ten years. She was the one who explained to my parents that I was not going to die in the next few months and that I would live as long as any other human being. She was the one who reassured me, listened to me, guided me... This last meeting between the two of us was a small event for me. Unfortunately not for her. I am well aware that I am not much of a factor in the career of this professor who must have seen a few hundred patients come and go. But it is true that our farewells were totally insipid and that it pained me deeply. These are appointments where I have gone alone for eleven years and even if the objective was medical, there is necessarily a bond that is formed.
But the cord was cut radically.
Second stage:
So I had a place, a name.
I did a quick Google search and in August I called. I know you have to get in early to make this kind of appointment.
I found the medical secretary with whom I had to make an appointment. I explained to her that it was for a first appointment but that I had a file at the Bichat hospital, so I had to get it back. She explained to me the steps I had to take: contact my previous hospital in Paris and ask them to transfer the file to an email address she gave me. She explains that without my file, they won't be able to validate my appointment for January. This seems feasible and simple to me.
She tells me that I should do a blood test a few weeks before my appointment so that I have relatively recent results to present on the day of my first test.
The secretary is lovely on the phone, very educational. It's nice and it's a change from the secretaries at the hospital where I was treated before who hardly looked me in the eye or talked to me as if I was a moron. Nevertheless, they were like that with everyone. However, it is not very pleasant to be received in this way:
"Do you have your tags?*
- No, I forgot them at home.
- Pffffff, well I'll print some more but think about it next time, because well...".
This is just one example among many, I close the parenthesis.
*identification labels for the sampling tubes.
Third step:
I call the secretariat of Bichat and explain to them that I have to transfer my medical file to make my next appointment with my new doctor.
"It's not up to you to ask, it's up to the hospital in question.
This was followed by a long telephone exchange explaining my steps, the procedure that the secretary of the hospital in Bordeaux had just given me. In short, I almost had to beg my interlocutor to do his job. I had all the information, the email where to send the file, it only took thirty seconds. And he was telling me about a procedure that was not the one I was talking about. I convinced him, he transferred my file to the email address and that was it. The appointment was therefore validated for the end of January. All that remained was to plan the blood test beforehand to be ready for the big day.
Fourth step:
I made an appointment with my new GP in Bordeaux to get a prescription and to be able to do my tests quickly in a lab. I'm not going to lie, it was a bit laborious. I had to guide her a bit on what prescription to give. I took the opportunity to ask for a complete check-up.
The next day, on a Friday, I went to the lab next to my house:
"Ah well, that's not going to be possible because the CD4s have to be sent to Paris, and it's Friday and we don't have a courier. We have to come back next week.
- Okay, is there a particular day? A time before which I have to come?
- No, everything except Friday, Saturday and Sunday. Sorry."
I come back on Monday at my lunch break at 1pm:
I said, "Oh no, you have to come before 11, it's going to Paris and our courier leaves at 11am.
- But I asked last week if there was a specific time and they told me no.
- Well, I don't know, but you have to come back before 11.
I admit I left a bit annoyed.
So I go back on Wednesday morning at 10am. Hallelujah, they don't tell me to come back. I fill in a whole bunch of paperwork with hyper-intrusive questions that are not at all adapted to my situation, such as: "Are you coming because you took a risk with a patient infected with an STI/STI?
"Are you taking a daily treatment?
- Yes, Genvoya.
- What is it for?"
I'm a bit embarrassed to answer because there are other people next to me and I think to myself that the level of confidentiality is a bit average. Then the medical secretary who registered my file asks a little about the prescription: "But what are you coming for?
I explain. No answer. She continues and directs me back to the waiting room, the nurse will come when she is ready.
Shortly afterwards I am picked up. The nurse is nice. She dissects the prescription, takes out the tubes. She asks me before injecting me: "What have you come for?
To be honest, when a health professional sees my prescription, he or she is supposed to understand (viral load, CD4...). I found this very irritating and I wonder if it is even ethical. As a little anecdote, I answered her question before the blood test. She didn't have a glove on and didn't put one on after asking me why I was being tested. Aren't nurses supposed to wear gloves for this type of procedure?
Once I left, I thought that the experience had not been very pleasant and that there was clearly a lack of training in this lab (very well known by the way). I didn't feel confident, I found the questions intrusive, I had to educate medical staff once again. This is a bit too recurrent. I can understand that we don't know everything, but it is important to respect the patient and not to ask this type of question when there are ten people around. In my case, I am relatively comfortable with the subject, but I think that it could discourage someone who is less confident about getting tested or followed up. I didn't receive a satisfaction questionnaire from the lab, as might be done, but I think I would have allowed myself to express my feelings if I had been asked.
My appointment at the hospital is next week, so this will be the final stage of this file transfer. I'm not too worried about the tests but more about meeting this new professor who will be following me. I'll see what happens.
If I could summarise my steps for those who have to do them: it's relatively simple on paper, but everything will depend on the human beings who have your file in their hands. I had to fight a bit for not much and I realised that communication between different hospitals was not necessarily very simplified. Perhaps there is something to be rethought at this level.
I would also like to point out the respect of confidentiality in the laboratory. Once again, I am not judging the fact of not knowing something, but simply the fact of not respecting the patient and questioning him or her on confidential subjects in front of a whole audience. There is surely some training to be done on this side.
I have rarely found myself in a medical department where HIV was fully understood. When I go to any doctor (dentist, physiotherapist, general practitioner, psychologist, etc.) I notice awkwardness, inappropriate vocabulary and behaviour, which for the doctor in question means nothing, but for us patients, is stigmatising. Unfortunately, I don't think I'm the only one to notice this and I don't necessarily see any positive improvements. My friends know more than some doctors. It's scary when you think about it.