So, . . . I didn't smack my neurologist, but I've been sorely tempted. Here's what ended up happening. On Monday the man himself called me. Shocking, right? Unfortunately he did confirm that the reason he wasn't sending me to the hospital near me, which is one of the medical centers he works out of mind you, is because of the new computer medical order system. He said it takes a whole, wait for it, 15 MINUTES to input the order and that it is just "a lot easier to fax an order in somewhere else." Frankly, I couldn't believe that he would actually tell me that he was going to hugely incovenience me, possibly even endanger me and certainly comprimise my care, because it would take him a whopping 15 minutes to put an order in the computer. He truly sounded as though he thought I would be sympathetic to his apparent misery. I also got the impression that he believed that once I heard how difficult it was for him that I would just give in and agree to drive the 20 miles out of my way each way instead of going the 10 blocks or so to the hospital I always go to for my pharesis and which also has an infusion center. Yeah, not so much . . . .I was very polite and thanked him very much for calling me and made polite noises about how I was sure that the new system was quite daunting for him, blah, blah, blah, and then I just waited. And he finally said he would find someone at another hospital that is also quite close to me, or see if the pharesis doc could put in an order at the hospital I usually go to. I said that either one would be fine and thanked him for his understanding and his efforts, etc., etc. I truly can understand his frustration with the computer system--computerized forms are so NOT my favorite things either, but sheesh, doc, get over it already. I'm really wondering how his medical group feels about him sending out high dollar procedures to their competitor!

Today I received a call from his office and he has sent a fax order to the other hospital and I should hear from them in a few days. Again, I was very polite and grateful, even though I'm still not happy that I can't just go to the hospital with which I'm very familiar. At this point I'll take what I can get and it is going to be extremely helpful to go some place very close to my house, especially if the treatment makes me feel ill since I have no one to drive me. So, even though I don't think he's too thrilled with me right now (and the feeling is somewhat mutual), I'm still glad that I politely stood my ground about what I needed and wanted. I'm also very relieved and very grateful to finally have this situation come to a resolution. Hopefully I will be able to start my treatment soon and it will really help. Because I feel like I'm slowly getting worse and it's really starting to affect my ability to keep working. And that is scaring me. A lot.

Thanks to everyone who responded to my initial thread about this problem. You all gave me support and hope and I really appreciate it.

Who's on first? At least that's what all this reminds me of - a comedy routine.

I know how busy doctors are. If it does in fact take him 15 minutes each time, for each patient, he may as well set up a cot at work cause he'll never make it home. But that makes me wonder . . . where are the genius administrators who thought up the new computer system, didn't train people well enough or have enough staff to run the damn thing?

We patients are on the bottom of this medical totem pole and we always suffer due to this nonsense. I'm sorry you aren't going to be at the place you are used to. But, hey, maybe you'll meet someone at the new place you otherwise wouldn't have!

I just hope it works for you, doesn't make you too sick and that you can continue to do what you want.


Annie

I was very polite and thanked him very much for calling me and made polite noises about how I was sure that the new system was quite daunting for him, blah, blah, blah, and then I just waited. hahahahahahaha -- a little passive aggressive, huh?? I LOVE it!! MK, you oughta teach classes in people skills!!

There's a gal in one of my other groups who puts her CHAIR in front of the examining room door after the doctor comes in -- just to make sure that he won't leave UNTIL she has all of her questions answered.

My regular neuro's office has hired a nurse-practitioner -- presumably to help with paperwork/computers/etc. Their practice was bought out by a HUGE hospital corporation with an eye on the "bottom line" (moola).

So glad to hear that things ARE looking up -- that you WILL get much needed treatment SOON!!

CowGirlUp,

Sounds like you've been caught in the crossfire of a power struggle between the administration (and their admittedly dementedly slow process) and your neurologist (who doesn't seem to have considered you). Well, that's not fun.

I'm glad to hear you're going to get some treatment somewhat close to you. Although this shouldn't have happened. Sigh. Sometimes it feels impossible to get good, timely care anymore.

jana - that's a pretty funny story about your friend putting a chair in front of the door. It raises my hackles though, the thought of being stuck in a small office with a neuro. My usual instinct is to have one foot *out* the door.

Ally

it makes me sad that this is what modern medicine has turned into.

power struggles, name and fame, publications, presentations.

and the patient has long been forgotten.


a few days ago, I presented the preliminary results of my clinical trial.

a phase I study in patients who have failed all other treatment.

and I asked one of my colleagues- don't you agree that the patient is much better since he started recieving the study medication, even if there is limited objective response at this point.

so he said, well, what I know is that he is recieving a lot of attention and care from you.

and then some of the people said that if those are going to be the resuts they are unpublishable.

right, the fact that a patient who was almost bed-ridden, is now planning a weekend with his wife, is totally unimportant if his spleen only decreased from 20 cm to 17, which is a very minor respose.

and if it is true that the care and attention that I am giving him, is making this difference, then what does it mean? that so many other patients who are almost bed-ridden could have been so much better, had they recieved such care?

I personally don't think that I have such magical powers, and I do believe that a good part of it is due to the treatment he is recieving, but it may be right that this also has to come with true dedication and care.

it reminds me that when I was a med. student I did a study on non pharmacological approach to pain in child birth.
at first the gynecologists were very skeptical about it, but at some point they couldn't ignore the fact that my patients were doing so well, so one of them came to me and said that it is impressive, but how do I know that it is my intervention that is doing it and not just placebo effect.

I didn't have a good answer then, because like many physicians I regarded "placebo" as some "noise" that was interfering with our ability to see the "true" effect of what we are doing.

I didn't realize then that "placebo" is an essential part of patient care. it is the result of the true patient-physician relationship, based on mutual trust and respect and the joining of their forces in fighting illness and disease.

and modern medicine, unfortuantely, is pretty much devoid of that.

alice

Hi Alice, thanks for this.
I think care and concern from a Dr goes a long looooong way.
I remember 2 Drs who seemed to go above and beyond the norm.
One was years ago, before I was diagnosed, she went the extra mile, unfortunaley she was doing her final stint in our tiny town, and was only there for a few months. I made an appointment just to thank her for what she had done. She was shocked I cared so much, I told her I appreciated her.
The second was a Dr in a public hospital, came and sat at my bed picked up my hand and held it with both of his, he appologized for not being able to see me right then but promised he would be back, he said this twice, and he remembered my name!!!! He came back right before his shift ended and admited me. My anesthetist came in on her day off to go through all the checks, and said "we won't rush this, you need to be comfortable with what I'm doing"!!! I don't remeber their names, the first was too long ago, the second, well I was to truamatized to remember much, but I remember how much they cared, and this helped hugely.
You are so right modern medicine is very much devoid of this, but there are a few of you out there caring for us.
thanks again
Kate