patient
Joined: 29 Oct 2002
Posts: 137
Posted: Thu Aug 28, 2003 5:13 am Post subject: cms meeting
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after talking to some people seeing what has been written on the board i am going to give you my opinion as to the meeting with cms. this in no way should reflect on the people who went to the meeting or the effort the put into preparing for the meeting. in my opinion they were treated like field hands making complaints to the master. i think they were shocked with the knowledge and the way it was presented. lets look at the physical conditions the was no water or other things. the on lydifference they did not stand with their hat in their hands and they did not leave through the back door and be given a piece of corn pone and a piece of cold fried fat back.
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KC sick of it
Joined: 19 Aug 2003
Posts: 3
Posted: Thu Aug 28, 2003 7:07 am Post subject: MEETING
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I performed the lion share of the presentation at the meeting. Let me just say, I think they were expecting ignorant complaining and whining patients.<
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>What they got were well informed, dedicated professionals willing to perform at any lengths to change this, form of government sanctioned genocide, so called in-clinic dialysis.<
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>"Business as usual," will not be accepted, not for one month or one moment let alone another year.<
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>They have all the information. Most of the studies I quoted were from their own documentation!<
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>We are neither ignorant nor ill informed any longer. The dirty little secrets are out. <
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>Our patients at DEO are reaching out to other patients to teach, inform and protect each other.<
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>Soon the public will know. Do you think surveys are going to pacify the families of dead or dying patient?<
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>Let's DO the math, 320,000 people, 2 relatives and 1 friend, equals ??????????? CLOSE TO A MILLION ANGRY TAX PAYERS, GOT IT, TAX PAYERS. THESE NUMBERS ARE LOW. I HAVE TWELVE PEOPLE IN MY LIFE THAT ARE WILLING TO DO ANYTHING FOR THIS CAUSE, INCLUDING VOTE HOW EVER I WANT THEM TO!
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BEYOND sick of it
Joined: 28 Aug 2003
Posts: 1
Posted: Thu Aug 28, 2003 8:24 am Post subject: Sad, very, very sad
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I don't think too many people are falling for CMS's survey tactic. At leaste, CMS is like the Boy who Cried Wolf and now no one trusts them. It is beyond insulting for them to ask for a survey when they have all the info they need and patients are dying everyday. <
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>I wouldn't want to be in the shoes of the court justices that ordered the Ten Commandments monument moved out nor the men who did the actual removal. <
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>CMS, like so many in government, you have failed to stand for right and trampled on patients lives. Given the opportunity to right the wrongs, you have still not admitted your grievous irresponsibility and owned your offenses. Nothing but a total admission of negligence and fullest apology can get things on the right foot. I think the situation will go very public by your own choice.
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Ya know
Joined: 28 Aug 2003
Posts: 1
Posted: Thu Aug 28, 2003 10:03 am Post subject: Yiou do what you need to do
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As far as the meeting, we needed to have that meeting. The government has been and is now fully accountable for its actions. We all knew that this meeting was only to make sure that all issues were covered. This way the governent knew and we proved they knew since 1998.<
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>Now we can all say what we want, but the fact is that we knew that this meeting was really not wanted by them. We had the meeting as they now once again are legally responsible for the patients.<
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>We knew that going into the meeting and what our purposes for the meeting were. When the government is serious on handling the situations at hand, then we will be there. But to be part of another "horse and pony" will not be part of.<
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>The purpose of the meeting we fufilled, and the government needs to realize that we will continue on our path, and they need to realize that we were made many promises at the Senate Committee on Aging, Standards of care were to be 6 months, 12 months, oh gee Arlene they are being worked on...Guess what no Standards of Care only questionaires for more money to the indusrry.<
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>When the government realizes that they have an obligation to our patients and start doing the "hard"decisions then we will be more likely to have trust in what they have to say.Until then, I for one want to see things happen to clean up this corrupt industry and not give them more money.. We already had surveys, and guess what only 39 people can fill them out and the ESRD Networks would state 100% filled them out. COme on and get real....this industry has been less than honorable. I would hate to think the government doesnt care. Until I see some REAL hard issues being handled, this is only a horse and phoney show again. We have lost 5 years of patients.<
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>When you want real issues to happen, we will be more than glad to help out...until we see some hard changes, then we dont want to be in the show again. If you get serious, you can count on us, until then we move forward.<
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>Arlene<
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patientwife
Joined: 18 Jul 2003
Posts: 47
Posted: Thu Aug 28, 2003 5:16 pm Post subject: DEO
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Do we want to be heard or not? If we want to be heard, we need to reevaluate our antics.<
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>As a strong-willed and strong-positioned person, I learned long ago the "art" of stating positions whereby they would be "heard" by the one I was trying to influence. I realized that I was defeating my purpose and hindering the outcome I desired by the manner in which I was communicating -- "the manner" was tuning others out. I still have to check myself; we at DEO need to continually check ourselves. <
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>Whatever we do, we must be mindful of and sensitive to the diverse population we purport to represent. It was with much restraint that I read the post referring to "field hands, master, hat in their hands, back door, corn porn, cold fried fat back", etc. -- especially on the 40th anniversay of Dr. Martin Luther King, Jr.'s infamous "I Have A Dream" oration.<
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>Water!. Who was expecting water? I only wanted to be heard!<
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>We must give that we expect!<
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Home Girl
Joined: 01 Nov 2002
Posts: 5
Posted: Thu Aug 28, 2003 6:25 pm Post subject: Martin Luther King 101
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Way to set it straight patientwife! The neat thing about DEO is we are a bunch of ordinary people who are called to a superodinary task. I know I am in a learning process since I never dreamed I'd be spending my life fighting this particular battle. <
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>So glad you have come on the board like gang busters and please feel free to teach away. The only thing holding us back is a lack of knowledge on how to deal with the powers that be. I'm a willing student and I'm sure others are, too. Believe a number are getting the idea. When the knowledge connects with the strong willed watch out! <
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>But like I said, teach us if you have experience in this area. I'm sure we all want to conduct ourselves wisely to win the cause. Think its only natural that many needed to blow off some steam today after working day and night for years now to stop the needless injuries and deaths only to be asked to take part in a survey So, tell us what we're dealing with here if you can and let us all learn together. Also, any ideas how we can better coordinate our efforts such as becoming a board and teleconferencing?
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Worker Bee
Joined: 29 Oct 2002
Posts: 28
Posted: Thu Aug 28, 2003 6:35 pm Post subject: Patientwife
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Were you reading this board when we had the Senate hearings? <
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>Believe me, you and the others were "heard". And the results are the same as after the Senate Hearings!<
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>A lot of things were promised at that time as Arlene has posted and 3 years later NOT ONE OF THOSE THINGS has been done. In fact they totally ignored us until DEO got in their face. The plain fact which are very apparent to all of us who have been here from the begining is that they have and will continue to ignor us. We tried nice. We tried to comunicate and we sent them documents. All to no avail. It is only because we didn't go away that they have finally realized that we mean business. <
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>Sit down and talk all you want. It didn't work before. Many of us who have been here from the begining, ( 5+ years) are tired of seeing our patients die. We are tired of seeing patients dumped. We are tired of the excuses CMS gives over and over again. We are tired of working under stress and threats of job loss, dirty units, poor staffing, paperwork that means nothing to you or us, supply shortages and chemicals that have hurt our and our patients health. I could go on and on. <
> Enough is enough. <
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> CMS has had 3 years to do something and they have done NOTHING! They know what we want, they know what needs to be done. No one at CMS is willing to say that it stops here and now. No one is willing to take the inititive to start righting the many wrongs. <
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>NO, they want more time!<
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>How many more patients have to die while we wait for CMS to do their job? Can your loved one wait that long while you do your "art?" I sure hope so because CMS doesn't have a good track record for doing anything. CMS fears public awareness. It makes them look bad. <
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>By the way, this is a non political thing as it has gone on for 30 years. So we can't blame the Democrates or the Republicans. Just the
own nosers who get into those Ivory Tower jobs and stay and stay and stay! :">
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KC sick of it
Joined: 19 Aug 2003
Posts: 3
Posted: Fri Aug 29, 2003 1:18 am Post subject: A year to cover up!
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CMS is currently employing what is called the stall and blame tactic. By giving us assignments they think it buys them time to cover up their neglect. Additionally, if we do not answer they will point the finger and say, "We tried to find out what their concerns were but they refused to cooperate."<
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>If they were truly interested in change, they would work with the information they have accumulated over the past THIRTY YEARS! If the patients best interest were their true concern, this study would be set up blind to protect the patients. Instead, as usual they are requiring the patients to stick their necks out. Never does the CMS put themselves in front of the patients to take the heat from the doctors. Makes me want to ask why, is there money involved? DO YOU THINK SO!
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FYI
Joined: 15 Feb 2003
Posts: 72
Posted: Fri Aug 29, 2003 4:31 am Post subject: It appears that opposition is good for growing
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however at this time many of us are well aware of the situations and how the government works ,we are very familiar with stalling and handling soft issues only.<
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>The meeting as we all were aware of before going was for legal issues only. We realize that we will not please everyone on this board. <
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>Once again the issues were presented, and the government for the 20 + times know what we are after. Not one hard issue is being
ought forth. However, the change will not it appears come from the government. I personally feel we need to focus on issues that will make the changes.<
>Public Awareness<
>Demonstrations<
>Expose<
>This is where the change will come from. CMS with the surveys are not the answer. They need to deal with the cleaning up of the issues. Until major factors change we can dialogue for all eternity, and in my opinion dealing with the government for 5 plus years, nothing has changed. Dialogue with the Senate hearings proved non productive and resulted in the death of a patient,who was told that the full force of the law would be
ought down on them.<
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>Dialogue can happen only when two sides want to see changes happen. Surveys are not cutting it in my opinion. To many lives are lost yearly. <
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>If the government wanted to dialogue then they would be putting up changes and our Standards of care would be on the table, and not surveys for more money. I personally feel that we need to continue on the path of the above, then maybe CMS will want to really change the industry. Good will comes with realistic expectations and not bandages. I am sorry, but this is my personal stand as being in the trenches and hoping for the government to do what is right. I have no apologies for my stand. It was well known that CMS Meeting was just a formality as change will not come until they are forced.<
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>The first demonstration is being planned and worked on next week. As far a emails, they will not appear on the board. We still are walking a fine line.<
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>Arlene<
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