Holding Medical Professionals Responsible?

[Annie2]

We all are disgusted by the general lack of knowledge of IC by so many members of the medical profession. How many of us have, ourselves, encountered a physician or nurse with no knowledge of IC? How many have failed to receive adequate medical care because the medical professionals to whom we turned for help were uneducated and mistreated us? How many times have we read posts on these boards by ICers complaining of this? This is not going to end until we, the IC patients, stand up for ourselves and insist upon IC education for all medical professionals. It is my belief we need to petition the AMA (American Medical Association), the AUA (American Urological Association) and each and every medical and nursing school in this country to promote up-to-date IC education for all medical and nursing students and practicing physicians in this country.

Up to this point, proving the very existence of IC has been difficult. It is my belief the recent research by Dr. Susan Keay and associates may well be the proof we need to effectively substantiate the existence of IC and demand IC education for all medical personnel. We have all heralded the breakthrough Dr. Keay and her colleagues have made with the identification and synthesis of Anti Proliferative Factor. We are thrilled with this new knowledge. It gives us such great hope for further research that we pray will give us better diagnostic tools, treatments and perhaps even a cure for IC.

I submit this research has given us yet another very valuable tool. I believe it has given us a legal basis for demanding education of medical personnel and adequate and appropriate treatment for IC patients. I am not an attorney and would certainly welcome a legal professional's view on this. I would also love to see a debate here among the members of this website on this topic. Now that we know of the existence of APF and it's devastating action on the lining of the bladder, do we not now have some scientific proof of the existence of IC? Can we now hold doctors and nurses legally responsible for acknowledging IC? Can we demand physicians recognize IC's existence and STOP the still too common practice of physicians claiming IC is a mental condition? Shouldn't medical and nursing schools now be legally required to teach what is currently known about IC? Should the AMA, AUA and other professional associations of the medical community be held responsible for disseminating this information to practicing physicians and other medical professionals?

As I stated, I am not an attorney. I am merely stating my opinion and would like to see debate on this topic. I am not suggesting there would be legal consequences for misdiagnosing an IC patient or that there would be legal guidelines for treatment of IC patients. We certainly are nowhere near that point. I would just like to see discussion and learn what others might be thinking.

Annie

[ICNJess]

Annie,

You made some very wonderful, key points. For example, when I was visiting my 2nd pain clinic, my doctor knew nothing about IC. Wait, I take that back. He knew of IC as being a "hysteria" disease. I was then lectured for 45 minutes about antidepressants, seeing a psychiatrist, and told to suck it up and make life easier for my poor husband and family.

We go to these doctors sick and afraid, and in search of answers. It took me so long to get a diagnosis. I was diagnosed with depression--I was accused of seeking attention--until 2 doctors took me seriously enough. My urologist that diagnosed me still calls and checks up on me from time to time--even though there is nothing more that he can do for me.

The curriculum on IC is outdated, if even existent, and it makes me ill when I talk to a friend who is in nursing school or med school, who does not even know what IC is, or thinks that IC is just a bladder infection. It infuriates me when I am told to just go home and drink cranberry juice. And furthermore, when I was in the hospital almost two months ago, they had me on a Potassium drip for my IV. I had no idea that I was, and was wondering why I had to go to the bathroom every 10 minutes and was experiencing a flare-up. The nurses were getting very short with me, as they had to help me to the bathroom.

The next day, my urologist's colleague was making rounds and discovered my IV and was angry--he told my surgeon to get the IV changed immediately. This could've been avoided if people would've known about IC!

With all the research going on, as you mentioned with Dr. Keay, maybe IC will be recognized. The curriculum definitely needs updating.

[Betsie]

Annie.

{{{{{GREAT POST**********

I just finished a post in regards to the media, a debate you joined in as well...I think this approach is right on the money...it starts in training. My nephew is a Dr as of May 1st. I need to ask him what if any knowledge he was taught of IC. I think we all have the right within our respective states to ask for curriculum and protocol of our State colleges with medical schools. I do think since the tax dollars offset the education costs for residents, we must have some rights to information.

I am quickly crashing here, but will follow this with great interest as i finally think a valid suggestion has been made, and one we are entitled to, vs. needing a media favor...one that could backfire if not handled right I might add.

[Dixiefireball]

I also agree this is a great post. even tho this is a great idea the question is how to get it out?? How do we get people to start helping? How do we get them to understand? How do we get them to care? How do we get it to be malpractice if they don't treat I.C pat. as the way they should and need to be treated??
all of this is a great advice!! I just wish we had some type of idea how to get it off the ground.

[VickiB]

I believe that Annie is on a good track here. Many people hope to have a winning high school sports team by trying new coaches, up-grading the field, purchase new uniforms & make a lot of noise. My hubby says the key is thinking long-term. To get the soccer program started in the grade school, and by the time these kids reach high school, then you have a shot at a winning team. I think the same theory applies here to IC. Perhaps the best impact we could have is to reach those in the early stages of their medical training, looking forward to a future where IC will one day be recognized and treated.

The question is, how to reach them? How to find out if IC is part of their curriculum, and if so, how is IC addressed?

Perhaps it is already part of their training. And what we've experienced and continue to experience, are doctors practicing who trained years ago and have failed to keep up with new information in their fields. I've lived with my IC symptoms since the late '70's, seeing many doctors over that time, yet was not diagnosed until last March. When quite by accident I ended up in this Urologist's office who was so young I wondered if he was old enough to drive.
But he was aware of IC.

[jaime15]

Annie,
I like your style and support of the IC subject as a whole.
The only thing is we can't MAKE doctors of any profession learn something or anything that they don't want to. Obviously some need to have a fire lit under their bum..........the only way it will happen for some is if someone close to them is dx'ed with IC..........then they will get their hands on any and all info and research possible. Of course, not all doctors have the same mentality.....some really do still care and want to continue educational area's.

Another problem, I've been told, is the IC community still isn't together....as a whole association. You know I've wanted to get more awareness out in my community by walk-a-thons, free hair-cuts for a small donation, anything!! But, again, it can't be done yet cause of the conflict between this one assoc.

We all want awareness of any kind. But I wanted to do something mentioned above to get the word out AND make donations for research....Cancer patients, ms, and the like have them, why not us?

In time, it will happen........and we will be around to keep everyone on their toes! ;)

I hope I made sense.........I'm on muscle relaxers and pain meds........forgive if I didn't...... :grouphug:

[kelly McC]

It just so happend yesterday at work (I am a hairstylist) I have a client who's a nurse in the ER (My local ER) her husband is the director of ER .. A hospital I have visited several times and NO nurses or medical staff have ever know what IC is..As some of you know my latest visit promted me to send a letter with detailed explaination of IC and how I was treated. So far NO response but I know I will get one.
Anyway my client hands a 4 page Internal Medicine world report December issue heading Interstitial Cystitis : Diagnosing and Treating a Hidden Disease. It is very detailed a great definition,treatments,diagnosing and goes into detail how many patients go from doctor to doctor and eventually after waiting so long to get diagnose are in extreme pain before they finally get the treatment they need. Very exciting.. She said both her and her husband read it and thought I might to take a look at it. Glad the word is getting out there.
kelly

[ICNJess]

Kelly,

That sure is promising, huh? I wish we could get commercials out there that are more mainstream--that would prompt some doctors to take another look at IC, huh?

[kelly McC]

I sure hope so Jess !! Everytime I read a post or myself get treated with such disregard I just sit here in awhh and disbelief.. Being a professional myself and dealing with the public I never can imagine treating my clients as I or others have been treated. This article is very promising every little bit helps get the word out there..
Kelly

[Betsie]

Kelly,

I truly believe these are the moments leading to awareness and we need to have faith in them...that is great, would love to see it.

I also wanted to comment above to Jaime...I guess I was under the impression we need to appeal to ground zero for med school info....we need to push for all Drs to be trained to recognize the potential and not just hand out antibiotics bsed on either symptoms or a urinalyisis...patients need comprehensive cultures prior to antibitotics...it is hat makes me think there are millions of Mild ICers out there that could benefit so much from early intervention....anway, I am going on and on about this..I agree Jaime, to get the medical community on the same page is futile, but to possibly start or push for awareness in medical schools is a thought.

[jaime15]

Most definitely start with med school....that is a plus for us!
I guess I just started my own vent about getting the word out locally and let it snowball nationally. But when some organization wants to put a halt to it, well, that is so discouraging. I guess I had my head in the clouds at that particular point in my dx. :)

But wouldn't it be grand for pre-dx IC patients to walk into a uro's office and get prompt dx and meds cause those doctors had studied IC long before graduation.

Betsie-you said you had a nephew somewhere pre-med? Maybe one of his term papers should be about IC and proper diagnostic medical care??!!
Auntie Bets would be a great researcher for it! You would be helping him and he would be helping us! :)

[ICNJess]

LOL@Auntie Bets!!

Ok that said, and after a good chuckle--recently I had a doctor's appointment, and it was about my IC pain. My doctor had a med student with her, and asked if it was okay if he stayed in the room and listened in. I said by all means!

I watched his facial expression here and there about IC pain and what not, and it looked like he was intrigued, and puzzled. Typical "new IC" reaction LOL. Anyway, maybe I affected one doctor?

I know how desperate we are to get the word out there--that's a passion we all have in common!

[twiggy]

The more I read these comments, the more frustrated I get. NONE of the nurses I have met--INCLUDING THE ONES IN MY FAMILY DR.'s OFFICE--have a clue what IC is. They actually roll their eyes and exchange glances when I come in. Maybe I should put this in the venting section! Then, when I had to go to ER for an instillation, one nurse asked me to explain what IC was to her. Then, I have encountered some specialists who are just as dense. All I can say is, write and write a lot. I tell everyone, too. All my relatives know and I will address a staff of 60 when I return to work. The most disgusting thing is when people think it is in my head. Goodness, gracious, I would love to transfer my pain to them for an hour!

[jaime15]

Is your doctor great that you just ignore his staff when there for an appt.?
That is so unprofessional of nurses to roll their eyes at you...............makes me want to kick them in the tushy for you........

[twiggy]

Yes, my family doctor is great -- a totally wonderful man! (Not to mention handsome, too, but I am not looking.) Come on over and kick their tushies for me. I will even pay you to do it for me. (Just kidding, of course!) I guess they can't help it if they are STUPID. On the bright side, I would rather have IC than be stupid!

[Babs RN]

Great post Annie---and as a medical professional myself, we all know my saga. There is not enough knowledge base for the docs and they are intimidated when their patient knows more than them. Rather than bringing a stimulating team oriented dialogue you get "my way or the highway" I wish I could change ER nurses...alot of them are full of themselves because it is a high profile quick moving area. I advocated for all the pain patients we got and it drove the docs nuts. We would give a med and not have it work, and I would ask to give something else and get the look. I'm persuasive at work and I usually won but if I could just convince my colleagues..........

Hugs and my 2 cents,
Barb :bonk:

[myra33]

I fear that trying to educate the entire medical profession is a little like emptying the ocean one bucket at a time. I think that we should educate patients and prospective patients as to what to look for when they have medical needs. Many years ago I had a very persistant (but fortunately not life threatening) gynecological problem. After seeing 8 different MD's (no exaggeration) I got tired of the patronizing pats on the head that basically said "don't worry, it is not serious", as well as their trying the same drugs as had been used before because, in their educated guess, "maybe it will work this time." I decided that I would never choose an MD if I couldn't interview them first. Even before the interview you get a really good sense of who you are dealing with by the way they respond to your "audacity" in suggesting that you need to interview them! My search led me to a wonderful internist and gave me a whole new appreciation of my own role in taking charge of my health issues.

We have to learn to be our own advocates. We have to have the knowledge and the guts to tell someone that we won't be coming back and why. We have to demand answers, not just accept their pronouncements like so many sheep in a flock. We have to not be cowed by overinflated egos. Yes, it takes time and energy and self-assurance, which is hard when you are lying on a table in a very submissive position, staring over the MD's shoulder at a wall of degrees and certificates.

Yes, I know that for some there are insurance issues that preclude doggedly pursuing the problem from one physician to another. But, remember that no one takes as good care of you as you do yourself. If you don't do it you can't expect others to always do it for you.

I know this is long, but it feels good to vent.
Myra