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scooky1

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Reply with quote  #1 
I wonder what would happen if we had a system of letting them know  We CVSA. are here and we are on line and we are rating them, we share what happened with time and dates, videos, names and shame them to the point that they will keep an eye on our web site because we are telling the world about them. good and bad !
perhaps the main office could send the ER and staff a questioner on CVSA. letter head with a print out of the post that concerns them, Directed at the proper section like the ER Dept. or customer service or the local news paper heck I don't know but I bet if we hit them in the money bags they will take notice.
Perhaps we send notice to share holders in good and bad for profit hospitals. we need to kick some ass and kick in gear.
I don't have any money to give and I really wish I did because I would find a way to help us! I have an idea that I am working on and I will let you know soon!
                                                        Still Ranting but getting better all the time!
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ginny

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Reply with quote  #2 
Our hospitals, Boston and suburbs, sent a survey to those who have had services at the hospital.  Do your ERs send the same?

I assumed that all hospitals are sending out patient satisfaction surveys. 

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ginny CVSA Moderator
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scooky1

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Reply with quote  #3 
This is exactly what I am saying or at least trying to. every time I get out of the ER I get all kind of request to complete written or Robo phone surveys asking me to rate the service of what ever or who ever.
What I am saying is we send them a survey telling them what happened and what happened to the CVSA member who went to whatever ER we want to let know what this organization thinks of their treatment of people with our situation.
Maybe we send it to their public relations department or find a synstive department to send it to, perhaps we take an ad out or letter to the editor of the local paper or----Oh I am running out of steam, it's Sunday afternoon.
Gotta work tomorrow you guy's figure it out! and while you're at it take care of the middle east and the opiate problem and the rest of the stuff the moderators will fix.
                                                      You Guy's are the best and Happy Mothers Day!
                                                                                    Steve
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wynnak

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Reply with quote  #4 
No one completes those surveys. I volunteer at a hospital and that is one of their struggle points. The surveys never get completed or returned. If it helps Steve, I saw an email newsletter or maybe it was on the BOD post that they are having a booth at the emergency physicians conference.
But I encourage contacting the hospital and starting a dialogue. Our hospital used to not have a clue what CVS was until us.. and our repeat evenings and inpatients.. now they ask what we are in for, and when we say CVS, they are like.. oh okay.. I know what that is. Then we talk more about it.. just to make sure :).

Er’s are a whole different beast. I have been in myself a lot lately.. it doesn’t matter what you have, you get the same awful treatment. Since you are in a less populated area, I suggest working with the hospital to see what they can do. It take a bit.. and it’s some effort. But worth it.

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Blynda
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scooky1

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Reply with quote  #5 
OK so now you know everything! is that it? 

I know you are right and you make so much since and I am going to have to do exactly what you say!
But I'm not done BITCHING yet!         JUST A MEAN DOCTOR!

I'm done for now. but I'm not very happy with the way she treated me! "we don't treat people like you with that kind of meds" you know, in case of addiction. (bet this girl Dr. was born in the 80's) and has the nerve to talk to me like that! PUNK B____H (female dog) ! OK now I'm done.

when I was young (12)I wanted to ride horses, so I hung around the polo stable near where I lived and bugged the guys who ran the joint until they put me on a horse and said ride him round the ring until his ears go back! I rode that horse for about an hour his ears never went back and the man put me on another and I got a job.

At(20) I wanted to fly so I tried my hang around the airport and bug the guy for a job washing planes ploy, next thing I knew I was a private pilot.

Wonder if I go hang around the ER and every place I can find a person of some usefulness and has ears, then bug the heck out of them until they pass me off on a person they hate! or who knows!

Hey I have been Dealing with the PEOPLE at St Charles Hospital in Bend Or. for over ten years and nothing seems to help as far as complaining goes.

So looks like I'm gonna have a huge donut bill, I know this is mean, but those people have been so inhuman to me over the years I hope they have psychological problems over the eating donuts and their diets! AND gain weight. a possible case of diabetes Might be in order!
I'm gonna need a lot a donuts!
                                                                     Thanks Blynda
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ginny

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Reply with quote  #6 
Steve, I wonder if you can see an attorney for a no cost one hour consultation?  You make an excellent point and it helps to read about the horses and planes.  While I think you will be removed from the hospital property and then notations made not to your benefit, I cannot help but think that what is happening to you is against the Patients Bill of Rights (should be posted in an obvious section of the hospital and also online).  As a discriminated person, you may have recourse.
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scooky1

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Reply with quote  #7 
Ginny and Everybody
I do apologize for my rants and that's over. I have been thru the U.S, Patient's bill of rights back to front and was married to a lawyer who, at times was in the ER rooms when things were not going so well. Talked to my own Dr. and he has said from the first "there is nothing I can do as far as the ER doc's go.
I do not mean go to the hospital and make a scene, I mean go there and actively search out some person who may be able to help.
Every other thing I have tried to do as far as complaining has gotten me To the place I am now in over ten years.
There is a man who has been protesting about a Dr. at that Hospital for actual years! standing off their property with a sandwich board with his complaints, He's been on the local news. and nothing!
So as long as I have time I think it has a good a chance of nothing happening but then again I may just stumble on something, lets call it prospecting! most likely I will just end up with a hospital super bug from being there but other than I will try to stay positive. 

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ginny

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Reply with quote  #8 
Probably not a lot of help but today one of my clients told me she had to purposely seek (by coincidence a GI) an "older" doctor.  She had seen her young PCP and twice the PCP just kind of scratched her head and suggested a CT scan.

My client was unable to eat or drink anything.  This is not a CVS patient but a perfectly healthy middle age woman with a terrible GI issue.

She called the older GI, and his office squeezed her in.  After chatting he knew her problem and said the days of direct admit are gone, she would need to get to the ER and be seen.  In tears she said she was too sick and too dehydrated.  He wrote her diagnosis on his prescription pad, said severe dehydration and suggested she needed to be admitted.

She saw a young PA in the ER who also wanted to run lots of tests.  She refused and begged to be admitted.  She then handed over what the doctor had written on his RX pad.  The PA called the doctor at home, woke him up even.  My client was put on a drip and into the holding area for 20 hours while waiting for a bed to be available.   Once she was actually admitted, she was tested and treated correctly.  She had Cdiff, which the GI "knew" before the test was done, spent four days in isolation and is now recovering at home.

She found her "one" person and this was after searching for an old fashion doctor.

Your one person might be the patient liaison or someone else.  I hope you can find that person and maybe your PCP might write your diagnosis and suggested treatment on his or her prescription pad?

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ginny CVSA Moderator
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scooky1

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Reply with quote  #9 
Thank you so much!

Again, To the people who come here and the people who run this place, I am sorry for going off and using bad language on the board I will try and be above such out bursts in the future.

It's 6:15 and I am just waiting for my nurse friend at my Doc's office to get in and give her the info about increasing the dose on these new meds and I am going to ask her to come to the MB and read what is being said here on the board.

I heard on the radio yesterday a young sounding ER Dr. talking about the increase in cases of people with cannabinoid hyperemesis coming to the ER's here in Oregon since they made it legal to use here.

So it seems almost every ER Doc in this state in this has this kind of mind set and some of them just treat people who have CVS that is not from pot use like, Well we all know what happens to us in the ER, for me it's about 70% of the time.

I have been keeping track of my visits to the ER and about 7 out of 10 times I am told " OK lets get you out of here" NO you haven't stopped it yet! "well I'm not going to give you any narcotics if that what you are asking" and I leave the room wait for a pricy taxi ride home moaning and freaking out the taxi guy.

I don't think I have ever in all my time here at the MB anyone who has never had to face the nightmare of the people at the ER no matter who it is.
People with children are looked at skeptically when they bring them in often and are accused of thing like (don't know spelling) munch housing syndrome or something else they have done to their child.

What is it about this illness that makes them treat us so much like criminals or junkies or like we are up to something and must be looked at with skepticism?

In an effort to curtail my bad language and rage I will say no more! but think of all the bad words you know and consider them said

Have a wonderful Day everybody and thanks for the information, Steve

PS. My Doc is Hans G.Russell at Bend memorial clinic in Bend Or. Kind of your regular country Dr. about 60 something just got married, Pretty Cool and one of the first Dr.'s to be understanding, it took years to find him. hope he doesn't retire. (sorry I hear he is not taking new patients)
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ginny

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Reply with quote  #10 
Maybe it is the old fashioned MD or one who has practiced long enough to be humbled by patients who are incredibly ill but whose tests tend to be normal.

I think the problem with CVS is that there is "nothing" actually wrong or diagnosable.  It is a functional illness.  IBS is a functional illness as are migraine headaches (far as this non professional knows).  IBS patients do not seem to be accused of seeking narcotics.  Some of our CVS patients cross into the IBS category and the migraine headache category.  My grown child with migraine headaches has not encountered any disrespect so I just do not understand the problem with patients in great pain and also the misery of vomiting being treated cruelly.

On the Message Board, this months BOD meeting report is pinned. I will probably start a new thread with the information but the Adult Guidelines are ready to be published, there is a hold up due to the publisher and not the guidelines.  This is hopefully the excellent news and progress you-- and so many others-- need.

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ginny CVSA Moderator
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