question
Joined: 26 Aug 2003
Posts: 7
Posted: Tue Aug 26, 2003 9:23 am Post subject: Does CMS
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want the input of all dialysis patients or specificially the ones who come to this board? After we submit our concerns is CMS asking for a professional paper to be written up for submission to them? The language of their proposal to us is in difficult to understand legalese. Can someone more clearly state what they want, what's going to be done with it, who's going to use it etc?
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ridgerunner
Joined: 11 Jan 2003
Posts: 101
Posted: Tue Aug 26, 2003 11:45 am Post subject: cms survey
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in my opionion all we are getting is some double talk another dog and poney show. the adverage patient knows nothing about their condition, doesn,t know the good from the bad. it in like giving someone an article writted in chinese that knows no chinese and ask them to tell you what the paper says. it is another stalling move. the problen is inadaquate treatment, able to chose the modility of treatment, no reuse, aplace to voice complaints with out fear, they know whats wrong but donnot have the guts to go against the big corps.
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Wed Aug 27, 2003 12:05 am Post subject: TY!
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Please let me know how I can help! Are we each submitting letters on our own, or will this be a group effort with one letter written, and then signed by many ect..?<
>I would be more than happy to pitch in. I'm not a writer but am inclined to pretend, if it gets the job done! Lin.
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Wed Aug 27, 2003 1:49 am Post subject: Come-On
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Ridgerunner, I agree with you this is just another dog and pony show. There is no doubt in my mind the "proper officials" know the truth about what is needed in dialysis. If Dr. Lockeridge and Dr. Blagg and a few others have been to Washington the story has been told. It doesn't take a genius to compare our labs against those on patients in-center. It also doesn't take a genius to see the difference in our quality of life. We aren't posting questions about fluid removal, low BP, nausea, vomiting, what to eat, stupid stuff staff say, blood leaking etc. No one wants to fix the problems, they just want to disuss it to death and pat themselves on the back for "trying". The only way I can see a major
eakthrough for dialysis patients is through science. Someone will invent a better machine, dialyzer, or stem cells will work, then if it's "EASY" to implement everyone will jump on the band wagon. All in all I figure this will be beyond my life expectancy.
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Wed Aug 27, 2003 2:32 am Post subject: Am I correct
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in that (after reading post) that this will be a survey that will be a standarized one that will go out to ALL pts.? Lin.
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leadsag
Joined: 31 Oct 2002
Posts: 263
Posted: Wed Aug 27, 2003 4:16 am Post subject: survey
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The way I read it, they only want input form organizations not individuals. But it is a big step forward that they recognized and asked for input form Dialysis Ethics. It gives the organization and incredible amount of credibility that some people would like to believe it didn't have before. I suspect this could be in large part to the professional presenation recently presented to the CMS by members of Dialysis Ethics.<
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>Good job folks that were involved.
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FYI
Joined: 15 Feb 2003
Posts: 72
Posted: Wed Aug 27, 2003 4:46 am Post subject: Opinion
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This would be a great idea, only we have surveys that are done now and they havent touched the issues of how the patient feels.<
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>The patients need not take and turn over the survey to the very clinics that they are rating, to have the possibility of the clinics sending up those that they chose to send to the ESRD NETWORK, as they do now.<
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>Patients fear retaliation and are not always educated in their care...coffee and a smile represents a great clinic to a lot of patients. <
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>Personally it needs to go out of the Networks hands totally and sent directly to an office that is neither Network or company boarded. Remember we have surveys now, I even helped the patients fill them out.<
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>Until patients are taken away from the industry influence, it is only one more way to get more money and conditions will continue for another 30 years. As always, the education of patients, choices of treatment and quality of life are the only indicators of good dialysis.<
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>Throwing a bandage on a sore will only allow it to erupt at a later date. This industry needs to be accountable for the conditions that it has been allowed to operate in in the past.<
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>The ESRD NETWORKS need to go,and who will qualify for more money and who makes that determination? The industry? The government needs to have more hands on and not just depend on surveys,as they havent worked in the past. It is another way for the government to once again allow the conditions to continue, only now the government can once again turn their eyes and it will be business as usual. It needs to clean up this industry and roll up their sleeves and get a new ESRD NETWORK with new people and not industry controling the outcomes. Too many lives have been lost.<
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>I feel that the government is trying to clean it up, but must realize this current set up has caused lives and no accountability. I would prefer that they clean up the industry influence, then the surveys may tell a story. But they need not to be given back to the industry nor the NKF. Check boards and it says it all.<
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>This is my opinion, no bandages and soft action to give more money to those who have been less than honorable. To not clean up the influence of this industry, patients will continue to die, but look good on paper. I also feel that all State Surveys should be in dialysis compare as well as posted in a public spot.<
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>Arlene
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jfwag
Joined: 11 Jan 2003
Posts: 140
Posted: Wed Aug 27, 2003 5:12 am Post subject: I agree...
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with Marty and leadsag. At least they are asking for our input but the legalese does make it difficult. I had to read it twice and will have to back to it again. Maybe an attorney might be able to help us put something together. It seems there is alot of research and technicalities that go with putting together what they want. I am going to pass this along to some people that are doing a study at Boston College on dialysis couples and see what they think.
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Feel free to join workgro
Joined: 27 Aug 2003
Posts: 1
Posted: Wed Aug 27, 2003 6:39 am Post subject: Email
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arlene@dialysisethics.org We need to get different groups moving forward. We need to start as patientwife puts it..start groups to research issues etc....
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Wed Aug 27, 2003 8:20 am Post subject: Survey
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what they want it a standardized survey that represents what pts. really think and feel. Until now they've gotten randomized "hand picked" surveys. Count me in Arlene; I'll do whatever I can. We need to find out who will be responsible for the control of the survey once it's drafted! If it's the networks or the units (social workers) it's not much better than what we have now. Lin.
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