Meeting with the big guns

This weekend I did some work on some of the background information of this blog. I added some stuff to the Things we’d like to change page as well as some of its sub-pages, like Equipment and Unit

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?

2 thoughts on “Meeting with the big guns

  1. Hi Henning,
    What a challenge you have ahead.
    I would focus on issues that should be easy to address and change. Identify what the people you are meeting with have the most control over and present those first as it may yield immediate results. Cleanliness, education of patients, private doctor meetings and scheduling of patients may be managed by the doctor and nurse for instance. The deeper, systemic problems of apathetic staff and lack of resources or poor quality resources may require a longer term strategy. I have only limited experience with the US system so am by no means an expert. From your descriptions of your experience, and the size of the organizational structure involved in delivering the experience, I think you may have to be satisfied with small progressive accomplishments. I think that you may need to focus on organising more patients to join you in challenging the system. The management structure receives its feedback and reinforcement from above and it is driven by statistics and not “customer satisfaction”. One thing is certain though, people make the decisions that create these systems and if they are not working then the process and the decision makers need to be challenged to find a different way.
    Kia kaha (stay strong).

  2. I’d give them the whole darn list. Let them see just how bad everything really is. It may overwhelm them, but you can’t hope to fix something if you don’t tell them about the problem.

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