Opinions wanted
Joined: 28 Apr 2003
Posts: 2
PostPosted: Mon Apr 28, 2003 3:50 am Post subject: on Flyer to have downloaded.
This is one flyer that Founding Rn came up with. We need to get serious on this flyer,and maybe include a page of education? Opinions, as we need to get going with this and put it up. We have helpers all over the United States who will down load and hand out the flyers to dialysis patients. We need to let them know they are not alone....so help out here and see what you think....<
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> Dialysis Ethics Organization<
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> Dialysis Ethics is a group of concerned medical workers, patients, and their families who are working together to<
> improve the dialysis experience for all.<
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> Our organization was responsible for the Senate Hearings in Washington D.C. on June 26th, 2000.<
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> All communication with our organization is confidential and anonymous unless you state otherwise. That is our<
> promise to you!<
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> Our organization has been instrumental in the following ways.<
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> 1). Successfully advocating for patients that have had their civil, patient and human rights violated including<
> those who have been dumped by their Dr.'s and units with no place to go. We advocate until all issues are<
> resolved and provide legal counsel when needed. <
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> 2). We have collected documents of various abuses of the dialysis industry, medical studies against the reuse of<
> kidneys and the chemicals used in reuse and are responsible for various lawsuits present and pending to end<
> these abuses. We also provide attorneys when needed.<
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> 3). DE is working hard to get the message out that the local ESRD Networks contracted under the CMS<
> (Medicare) are not patient friendly and are boarded by the dialysis industry and almost unanimously side with the<
> companies/ clinics. Your complaint is not handled anonymously, it is sent back to the company/ clinic with your<
> full name. <
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> 4). DE is working to get you, the patient, off the stockmarket. Did you know that your Nephrologist receives up<
> to $100,000 when he/she contracts with a for-profit dialysis company to send his/her patients there for dialysis?<
> No other medical specialty can profit like this from their patients. This would be a violation of the Stark and<
> anti-kickback laws that apply to everyone else. DE is working to get these laws changed so that your<
> Nephrologist can get back to being YOUR Dr, concerned only for your health and well being. Not as an investor<
> concerned with the profit margin from their "Cash Cows". <
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> 5). DE is working to get rid of the reuse of dializers, the practice of minimizing the training of dialysis staff,<
> supplies, and inadequate dialysis, all for the sake of profit. <
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> 6). We advocate for the right of patients everywhere to be able to choose the dialysis modality that best suits<
> their individual needs, whether it be in unit, home hemo, peritoneal, CAPD, or slow nocturnal, and the right to<
> refuse reuse and be informed of the chemicals used in reuse.<
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> 7). Presently DE is working with various well- known journalists, TV News Magazines, and other organizations to<
> help inform the public of the abuses in the dialysis industry and to patients in particular.<
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>
http://www.dialysisethics.org/ is our web site. We offer General Discussions in a wide variety of topics with dialysis<
> patients from all over the world. It's patients talking to patients, asking questions and encouraging each other.<
> The Education section is where common dialysis treatment problems and questions are answered. The FYI<
> section has Medical studies and articles of interest to patients concerning the chemicals used in the reuse of<
> dializers and more. These can be downloaded and printed out to share with others. The Memorial page is for<
> those who wish to share the memories of those lost on dialysis. Alternative Dialysis Modalities is for those<
> interested in learning more about other dialysis options such as slow-nocturnal and home hemo. Patient Stories:<
> this is for those who wish to share their stories, both good and bad, of life on dialysis.<
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> If we can be of any help to you please contact us at any of the following:<
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> E-mail: arlene@dialysisethics.org Web site:
http://www.dialysisethics.org/<
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> Phone: (360) 604-4440<
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> Mailing address: Dialysis Ethics Organization<
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> 11500 N.E. 76th St.<
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> Box 241<
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> Vancouver, Wa. 98662<
>
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leadsag
Joined: 31 Oct 2002
Posts: 263
PostPosted: Mon Apr 28, 2003 4:29 am Post subject: none
Suggestion - add to first paragraph - "current and former" medical workers, patients .....<
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>How long has DEO been around?
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several
Joined: 28 Apr 2003
Posts: 1
PostPosted: Mon Apr 28, 2003 4:52 am Post subject: comments
This is very good FRN! I saw just one or two grammatical errors that should be corrected to make those sentences clearer. Also I saw a word or two that needed clarification. Like the word "kidney" may not be understood by everyone. Better to say the artificial kidney or the dialyzer, or define key words.<
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>I'd like to see something included for the many patients who don't have the intellectual ability to understand the flyer or a way to ensure that it gets to their caregivers. Can it be delivered to their caregivers' home address or do privacy laws prohibit this? And most patients I know do not have computers or go online so its almost like these patients ( the majority) need a separate flyer with something very simple printed in capital letters. Most patients can't afford long distance calls either. <
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>Also, would someone explain to me how the units are going to permit the flyers to be distributed since they are so hardhitting against them? I mean, they state the truth, so aren't the units going to fight this? Will they be distributed inside the units directly to each patient, outside as patients are leaving or on their cars in the parking lots? Will the dialysis staff be given flyers as well?<
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Joined: 06 Jan 2003
Posts: 41
PostPosted: Mon Apr 28, 2003 5:37 am Post subject: Re: comments
I would find a phone if I needed one. Even borrow one. I personally feel until we are up and going,that someone will be able to help out with a phone call,relative,etc.<
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>Many patients email with their phone number and we call them back. Until we get up and going,we are going to have to help one another get the word out.<
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>We have the help of those who will get the flyers out. To let those know that they have a place to go...Soon we will have an 800 number. <
> Edited by: realdialysisethics at: 4/28/03 9:44:18 am<
>
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realdialysisethics
Joined: 06 Jan 2003
Posts: 41
PostPosted: Mon Apr 28, 2003 6:14 am Post subject: Re: comments
Dialysisethics site went up on Feb 14, 2000 originally. Then we revised and went up on Sept 28th under the new site.We archieved the beginning of our journey in the archieves.<
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>We started to get the word out in June of 1998. Until we realized that the complaint,no matter where it was placed,went back to the ESRD NETWORK. Then called to find out who was on the board of that organization,as they would not give out the names at that time to the li
ary and told the li
ary to have someone call as to why it was wanted. The next day when I went to work (5am) the next morning there was a Godzilla list on passing a survey at my unit. I quit shortly and other workers wrote letters as we saw the writing on the wall. Our complaint did a full circle. So we wrote to Ralph Nader,then after reading an article in the newspaper we found out about the Committee on Aging and mailed documents and had 3 Federal Investigations. <
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>Dialysisethics.org was a site that was founded to have the patients directly go to the Senate with their stories. Many patients would speak to us,but many went directly to the Senate. Many feared retaliation.<
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>We were promised Standards of Care in 2000,it would take 6 months...three years later,we are still waiting. Nothing has changed. We were going to hand over this site to the patients and the
fact that what we stated and the documents and the validation of the Federal Investigations that our jobs were done. Only to find out that they did nothing and it was nothing more than time infront of the microphone. The ESRD Networks were not disiplined for not protecting the patients and there was NO quality of care in existance for the majority. The ESRD Network was found to not validate the statistics. Remember some of our nurses in the country were ones that were going back to validate statistics that were 5 years old and had to guess. Nothing is change,other than the NETWORK still is operating with indifference to the patients.<
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>That is why we are still here. When this is over and the laws are changed. When safety and quality of care,choices and a fairer complaint system is set up.....I will be leaving and it will go to others to oversee this industry. Dialysisethics has not made a dime on this journey. But with all of us we can make a difference for those who dialize now and those who will come in the future. It is very do able and our chances are great! <
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>But Dialysisethics will only grow in numbers as the word gets out. The journalist is amazed at what this group has accomplished against great odds. WE just have a great group of patients,workers and family members who truly care about doing what is right.
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