The reason for this was that there was a letter from the head nurse (or should I call her “die Über Nurse”?) inviting me to a meeting with her and the leading doctor who administers the entire nephrology ward – which has a considerable size due to the area in Copenhagen that my hospital covers. When I first held the letter in my hand my head reeled with hesitation. I was in no way sure that I even wanted to confront them with how bad things are for us patients. But after a while it dawned on me that I couldn’t chicken out now for a number of reasons. There were real people who needed me to tell their story for them. I had asked for dialogue and I needed to be part of that dialogue now that opportunity beckoned.
So I started looking at my list of things that were wrong. Since I was in charge of it, those things were by no means organized on a neat little list or even a single piece of paper. Some of it we had put up on the aforementioned page but there were also a lot of things that were not part of the page. So as things unveiled themselves to me, I put the things up on the page as well as making a list of things I wanted to talk to the big guns about.
I feel like have only just scratched the surface of what is wrong with the way dialysis is done, not just here but all over. It seems pretty universal that people are dialyzing under horrendous conditions. This is going on in what we (at least some of us) would otherwise call civilized countries. And it’s time for us patients to stand up and demand some serious changes. There are a lot more of us than anybody dares to dream and only by a concerted effort can we make the necessary changes.
So I worked on a list of pointers that I want to bring to the meeting. I have so many ideas because there are so many things wrong. It is not like I am some kind of brilliant genius. Now my biggest concern is whether I should leave a few things out to make room for the most pressing problems or if I should bring everything with me and just barrage them with it to show how fundamentally flawed the present system is. I honestly haven’t got the answer right now.
I have bought myself some time though. I have asked to have an advocate with me since I have no intentions of sitting there all alone with those two people who think – and by and large know – they have the power.
Comments are welcome. Should I read them the riot act and say it all at once, or should I be strategic and only present the most important issues?