Things we’d like to change

This page was created because when we were at Jönköping in Sweden we were asked to take part in a survey that was created by a design student who wanted to change the experience for dialysis patients.

As you might imagine Melissa and I had a lot of things we wanted to change. So I have decided to categorize some of the most obvious ones and categorize them in the following way:

The guy creating the questionnaire had a desire to make the process for dialysis patients easier. So he asked about all the issues that we were exposed to as dialysis patients. Not only issues that he as a designer could help with but the kitty and caboodle. So Melissa and I went to town and came up with a rather long list of things that we found were wrong with dialysis. We didn’t hold back and addressed everything from the size and function of needles to the fact that manufacturers of equipment only looked at their revenue and therefore had no interest in patients or their wellbeing.

So here are some of the problems that I encounter as a dialysis patient and some suggestions to how to alleviate them. As a long time patient I am used to things not working the way I as the patient would like to see or the way that seems most logical. But I don’t think I have experienced such a complete lack of understanding for the welfare of the patients as I have after having started dialysis.

Now, I think a lot of it has to do with the way the Danish hospital system functions these days. It has gone from a very well functioning public system to a nightmare of checks and balances in the holy name of New Public Management. Which in its straightforward simplicity means that the only thing that matters is to make sure the paperwork is in order. Patient care doesn’t matter, what matters is to document that patients have been cared for – not that it matters if or when or how they have, only that is says they have been cared for.

The simple answer to that is this, if it says they were cared for, they were cared for because it says so! It’s a pretty simple system and it works. And why does it work? Because we can all find the report that says it works.

Do you see the point I am making here?

So the thing I would like to educate the staff about (or at least make that first little change in the way they look at it) is patient empowerment. Patient empowerment is a hospital buzz word and it has almost become like one of those bullshit bingo words in the hospital system, like ‘low hanging fruit’ and ‘outside the box’ and ‘on the same page’ has been in the business world where they are nothing more than clichés used when real words fail. But I don’t want this very important concept to become a cliché I want people to look at it and make it into something valuable, a goal towards which is always strived – because it is also an unobtainable goal, there is never going to be absolute patient empowerment. Not only do the doctors and every other group amongst the staff going to relinquish their power and give it back to the patients, it would be a disaster if that happened. What we are striving for here is a balance where the patient is in control of his/her own disease process to the best of their ability, nothing more and nothing less.

The patients need to have the amount of control that they are capable of and that they feel comfortable with. It is that simple. What makes it utterly much more complicated is that every patient has an individual level of competence and willingness to take over that control. And who determines what the individual patient is capable of and competent to deal with?

This little intro to patient empowerment is only scratching the surface of all the challenges that are connected to the issue. And this forum is not one for going deeper into it. So let me get back to my original thought here.

The problems that we have encountered are multudious and a lot of them are overlapping and not easily categorized. But in the following I have tried to make some sense of order out of the chaos that we were met with when we had filled out the questionnaire from Joakim, the design guy who wanted to make things easier for dialysis patients.

Like I said in the beginning, I have decided to categorize the problems into five different categories:

(We are currently updating these pages so come back soon)

One thought on “Things we’d like to change

  1. Pingback: Stuff We All Want to Know about Henning

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