Systemic incompetence

Since the beginning of this summer of 2012 a very dear friend of mine has been getting continually more and more sick, and so far non the wiser about his condition! The Swedish health care system seem stupefied since they cannot find out what is causing his condition. Read on to get acquainted with his painful symptoms and how the medical system is “treating” them. Here is his own words, painfully and painstakingly put together with one letter at the time – since he is loosing more and more of his ability to use his hands…

This post is not exciting, or humorous. If anything it’s a damning commentary on Swedish medical care. Feel free to skip over it. It took a lot of pain and time to type but I had to get it out and it’s really only important if you get sick in Sweden.

My anger from yesterday was mostly disappointment at the lack of professional attitude and empathy I’ve been inflicted with by the medical community that I’ve been in contact with here in Sweden.

The Dr. I met yesterday was wound tighter than a spring and really didn’t have time. It takes between 6-8 weeks to get non-acute times at our local clinic. That’s for each appointment. Other than blood tests they are reluctant to send out for x-rays or other tests due to cost.

There is a separation between the testing unit(s), the hospital and the clinic which means that it takes weeks to get the results and then add on additional weeks to get a non-acute appointment to discuss. My results from the long visit in September to neurology at Lund which contained MRI and CT scans and new blood work disappeared, at least they weren’t available to the treating Dr. yesterday (when they were needed).

All the while my condition reaches a stability, then worsens and then stabilizes at a lower plateau. While they dribble away my time I get worse. I am so disappointed.

At each step I have to face a lack of empathy from Dr.’s and many nurses (not all, but a majority). After all, if I was really sick, it would show up on one of their tests. Their technology is, for the most part, on par with the US in the early 1980’s. Even the MRI looks almost 20 years old with yellowing plastic and creaking equipment. The CT scanner was newer but one piece of equipment does not a modern hospital make!

What isn’t understood or cannot be traced by a test result is simply “can’t be a *real* medical problem. After all it would show up in tests”(and the tests aren’t that refined or carefully studied in Sweden unless you’re a star, pro athlete with a totally preventable knee injury, or high government official and happen to be at Sahlgrenska in Gothenburg). Cuts, broken bones, heart surgery…all the mechanical stuff is fine, ask for diagnosis and they get lost.

There was a man in my old town of Trollhättan who was driven by ambulance 57 (!) times to the regional hospital at NÄL – without a single x-ray or control of his head. In the end he had to fake a stroke to get his head looked at and then, wonder of wonders, they found a tumor! He’d been having blinding headaches and problems for 5 years! That is typical, in my mind, of my experience and what is happening to me since around 1998 when the problems with my feet and legs first started to be really bothersome.
It’s systemic incompetence at a national level. I’m well acquainted with NÄL, as that is where my problems were first investigated (and not well!).

All the material I read says this type of problem I’m suffering from is uncommon and often doesn’t, and can’t be traced (between 20-80% of the time), but it’s the overall picture that counts. They don’t spend the time to get the overall picture but stumble from test to test, Dr. to Dr. until I’m too tired to keep track anymore.

There are several illnesses that could fit the bill when it comes to what’s happening to me but I, a total layman, seem to know more about them than the doctors I’ve met and the neurologist and that’s just not right. They give me this blank look like “Really? I didn’t know that” when I mention something that may be applicable but they can’t come right out and say anything for fear of showing their ignorance. The bright star of the group was my visit to a rheumatologist who ventured to speculate on possible brain damage for various reasons. He was actually trying to problem solve! Amazing! 1 out of uncounted doctors I met. That’s just not right.

I don’t care about their pride anymore, I want help.

My personal opinion is that sports related injuries should be paid for privately, in private hospitals as that type of injury is totally avoidable. National health care should be focusing on the unavoidable. it’s not right that a knee injury from football should go before anything else when it comes to medical care. I think they should be trialed to lowest priority. Bleh! I’m just upset.

I read about a new neurology clinic in Billings, Montana (USA). I can’t afford it, but that’s what I’d like to visit. Folks who know what they’re doing and have the equipment and proven background to at least say “I’m sorry. This seems to be permanent. We don’t know the cause but we’ll keep an eye on developments and hopefully we can stop it’s progression and limit it’s effects.”

All they say here is, “Umm…don’t know. You should be alright according to our test” (and they’re never wrong). “Are you sure you’re not making this up” – insinuating that I don’t like working or it could be a depression (been told that a few times, the next time I get up and walk out of the office!) or any number of nonsensical things! My depression is caused by my illness and their incompetence, not the other way around!!!

I need a dedicated neurologist, and experience rheumatologist, a psychiatrist and a physical therapist working as a team. Here I get a physician and physical therapist to “get you back to work as soon as possible” and, according to their documentation “just because it’s painful is no reason to….” I quit reading after that. I’m in constant pain, am losing my voice and ability to swallow and can’t wear shoes and barely tolerate short socks. What kind of physical therapy can I participate in when it’s movement that increases the pain? I’m confused on that point.

I’m going to the pain clinic on Monday. I get to meet a Dr. and a physical therapist. I’m having my wife to write up questions that are applicable. How can I be “rehabilitated” from an undiagnosed illness?

One Response to “Systemic incompetence”

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