Founding RN
Joined: 10 Jan 2003
Posts: 172
Posted: Sat Sep 13, 2003 11:20 am Post subject: New Hearings
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Patients,<
>The safest way to participate in this hearing that will take place next month would be to write out and either send by snail mail or e-mail it to us at DE. We will make sure that your name is not on it unless you state otherwise.<
> It might be nice to at least identify which state you live in, as that may give the committee more of an idea of how wide spread these problems are.<
><
>We did the same thing when we had our Senate hearings in 2000. The testimony was compiled into a book along with the actual hearing transcripts. It was about 3/4 of an inch thick and the testimony was impressive and heart
eaking.<
><
>I would encourage all of you to take this oppotunity to do this, but I also advise you to not count on them to do anything. Let's let their actions speak the truth of their words. After all, we are still waiting for action from the 2000 hearings.
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DEO
Joined: 13 Mar 2003
Posts: 12
Posted: Sat Sep 13, 2003 11:38 am Post subject: WE CAN'T GIVE UP AND WE CAN'T GIVE IN
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Leadsag makes a very salient point and it is what's wrong in and with the dialysis industry. No patient should be fearful of sharing experiences with Congress or any other body in position to effect changes. In the situation presented by Leadsag, fear is not only about being kicked out of the dialysis unit for "slanderous and/or libelous statements regarding staff members or operation of the facility". Fear is about not even having access to "emergency treatment". What does such say about the affairs of the dialysis industry?<
><
>The fear is well understood. Many live with it daily. However, and this is where optimism comes in, there must be some dialysis units/corporations which do not so threaten the lives of human beings, especially sick ones.<
><
>All patients may not feel free (from retaliation) to share experiences, but some of you are not so intimidated and can talk about your concerns -- you can do it anonymously by sending your depositions to Arlene for inclusion in an official presentation to the Senate Finance Committee, or, for those of you comfortable with your circumstances, you can send your depositions, with name included, directly to the Senate Finance Committee. The choice is yours.<
><
>You make speak anonymously; you may speak openly; or, you may remain silent. Congress wants to foremost hear from patients. As difficult as it may be - due to the disappointment of past hearings -- consider telling your stories again.<
><
>Governmental bureaucracy sucks at times -- it takes too long -- too many hearings -- too many studies -- too many investigations, while humans are suffering and dying. That's why Arlene has said that while DEO will participate as requested (providing numbers of patients open to testifying before the Senate Finance Committee), DEO will continue on its path of public awareness and lawsuits.<
><
>History is history! This is a new day! But this new day is not just about more congressional hearings and lag time by bureaucratic offices, their affiliates (i.e., Networks), dialysis units and industry. It is about DEO, patients and all of their supporters, taking its message elsewhere, aligning with others who will lend their energies to effect changes for dialysis patients.<
><
>Patients, this is another opportunity to be heard. Speak up! Send your depositions to Arlene or send them to Congress Senate Finance Committee.<
><
>We may have to speak up 1,000 times before we see what we know is coming. Let's keep speaking up. Someone will hear us. It may not be the Senate Finance Committe, but SOMEONE WILL HEAR US. Remaining optimistic !!!!
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brenda
Joined: 28 Oct 2002
Posts: 103
Posted: Sun Sep 14, 2003 11:58 am Post subject: To all
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as you know, we have continued to speak out about what happened to Brent after the hearing. Well perhaps it would be better stated, what didn't happen to Brent after them .He took the chance to speak out for all, knowing what would happen- but wanting to believe what our "HONERABLE" (gag me) senators would do. Most of the usual officials that were contacted after Brent passed, with our asking questions and wanting answers went un-answered.But is it going to stop me, hell no.<
>I know some people don't understand that there are protocols that have to be followed in getting the story out and so we become frustrated. The journalists-reporters-attorneys have to check out every detail to ensure everything is correct. Unfortunately this all takes time, and in the meantime we here lose more family members everyday because of it. Frustrating, bleep right, things should of chaged years ago with this, but it hasn't happened. Patientcy, I don't have any, yet I know things take time. I just sit and think where we would be right now today if it weren't for what the founders of DE have done. This board would not be here, more family would of been lost without the advocacies etc. So while it is moving slow it is because of the GOVERNMENT'S
oken promises., not from anyone here. And we have to keep moving on.
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wondering
Joined: 23 May 2003
Posts: 7
Posted: Mon Sep 15, 2003 7:40 am Post subject: If chemicals not rinsed out properly
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Each time you are put on the machine and are doing re-use the technician/nurse, should be testing that the chemical is out of your lines. <
><
>It looks like a glucose tab, but you should be able to see that it is white and not any shade of blue. This is to be done BEFORE they hook you up. Ask to see it.<
><
>This is one reason I am also against reuse. You have a choice and you should not have this to worry about it You signed a release form to do reuse. Tell them you would like to try no reuse. <
>
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DEO
Joined: 13 Mar 2003
Posts: 12
Posted: Mon Sep 15, 2003 9:21 am Post subject: UPDATE
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Information/e-mail addresses/phone numbers, etc., received by Arlene have been sent on to the Senate Finance Committee investigator or to the journalist, as you requested.<
><
>Some of us from DEO will attend hearing as observers. We are expected to be joined by 3 reporters, one from the Washington Post who has been aware of our issues over the past 5 years; one from (AARP) Modern Maturity magazine; and Carl Ginsburg, the journalist who has been working with us for patient rights and industry accountability.<
><
>See separate post for contact with Arlene re the hearing.<
>Continue to send your e-mails, informing whether you want them passed on to the Senate investigator or to the journalist working with DEO.<
><
>
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patient
Joined: 29 Oct 2002
Posts: 137
Posted: Tue Sep 16, 2003 8:17 am Post subject: depositions
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Please give specifics on depositions. How many pages, one or two experiences, everything one finds wrong with dialysis units, one's life story on dialysis? Please be more specific.
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Founding RN
Joined: 10 Jan 2003
Posts: 172
Posted: Tue Sep 16, 2003 5:05 pm Post subject: Patient
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We have already documented what is wrong with the industry. <
> What is wanted is your story of life on dialysis. Things such as the following:<
>Do you feel safe on dialysis?<
>Are you treated with respect in the clinic.<
>Have you recieved dialysis education?<
>Are you encouraged to be an active participant in your care plan for your treatment. <
/>>Is your unit clean?<
>How do you feel on and after dialysis?<
>If you have a complaint, do you feel able to voice it? How have your complaints in the past been handled?<
>Can the staff answer your dialysis related questions? <
>How often does your Nephrologist make in unit rounds? <
>Is home hemo offered by your unit if you want it?<
>What other dialysis options are offered?<
>How do you rate the care you recieve by the staff and your Neph?<
><
>I think you get the picture of what is needed from the above. The above is only a small list of suggestions that you can use. Hope this helps. <
><
>
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skiner
Joined: 18 Sep 2003
Posts: 1
Posted: Thu Sep 18, 2003 1:57 am Post subject: Question
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Is anyone planning on trying to meet with their Senator prior to the hearing in October to see what type of support they are willing to offer? ie, are they willing to get involved and offer support to imporve the quality of care dialysis patients are receiving in their State? Are they willing to meet with dialysis patients to listen to them? Will they do anything to see that units are inspected?<
>Just a thought
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Dc Hearings
Joined: 18 Sep 2003
Posts: 1
Posted: Thu Sep 18, 2003 6:34 am Post subject: Fyi
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We will be meeting with the press when we are up there. Also will be meeting with some of your Representatives.<
><
>I am confident that change will happen. But it will happen only when our Senators realize that the public awareness will continue. It is the perfect time for the changes to happen. The hearings are one thing, but my faith is in the fact that the larger press are asking for interviews and are wanting to help us along<
><
>Arlene
