Curious
Joined: 02 Feb 2003
Posts: 39
Posted: Wed Mar 12, 2003 7:20 am Post subject: They are great at handing out contracts
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Do niot forget who has given out contracts to the providers. The Networthlessl
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Curious 2
Joined: 04 Feb 2003
Posts: 5
Posted: Wed Mar 12, 2003 8:00 am Post subject: count on us
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Count on me!
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To disgusted
Joined: 12 Mar 2003
Posts: 1
Posted: Wed Mar 12, 2003 8:21 am Post subject: two different patients
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One African American was discharged from this clinic awhile back. She went on vacation to see her daughter and she was told she couldnt come back.We fought like hell to get her back in. <
><
>The patient we are currently advocating for is scared to death. She has asked us to intervene on a reuse issue which they did. As she had other questions and had asked us to help her advocate. This is the same company and clinic as above. They sent us a letter stating that they cannot honor that advocacy this was in early January. We asked them to give our patient one that they would honor. They didnt.Then we asked the NETWORK to intercede and to keep a paper trail. The NETWORK at that time stated that this patient had a right to choose an advocate. It is in the ESRD Regulations (FED).She was afraid of making the doctor angry. This patient was scared to death. <
><
>Then the patient called and was in the hospital and has been receiving massive units of blood. The clinic has not responded to her request. Once again with the paper trail we contacted the ESRD NETWORK,who is trying to figure out what an advocate is. She is clearly putting this patient at risk. We have contacted IDA Sarasitis and making her aware of this issue. Even asked her if she wanted to be on the conference call,still has not answered.<
><
>The fact remains in their very own letter that was written to the patient dated March 3,I received a letter <
>that was dated March 4 leading us to believe that she was in response of the letter and as soon as she signed it the request would be done. Called the patient who stated she wasnt in receipt of the letter. So called Tom Simmons and stated that she had not received it. His compliance officer was out of town and I offered and faxed him a copy of his own paperwork to have given to the patient. I would hate to think this,but I cant help but wonder as others that they are waiting to see if she dies. If she dies the records are closed until a lawsuit is filed. She is scared to death and is being asked if she needs to go to another clinic,as she has lost trust. She simply wanted us to advocate.To date we are waiting to see if they are going to honor her request. <
>We are not going to wait for government stall tactics. We need to jump on this soon,as your lives are in the balance.<
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>Arlene<
>
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Disgusted
Joined: 26 Jan 2003
Posts: 45
Posted: Wed Mar 12, 2003 8:58 am Post subject: contact information
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Arlene; You must have made an impact in some way these people are not picking up the telephone (voice mail) and Glenda H. is out of the office until Friday. I guess they figure if they do not answer the phone we will simply go away!
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Opinion
Joined: 17 Jan 2003
Posts: 13
Posted: Wed Mar 12, 2003 9:31 am Post subject: Help is coiming.
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The conference call is being organized now. So far Ida has not gotten back to us. It appears that this cannot go unchallenged. Patient rights are all but non-existance.It appears that now we stronger than ever before.We now have help it getting the horrors out.Major organiztions.<
><
>We are asking all of you to fax,call and hand out the numbers. This is a now or never situation. It is an everybody's job.<
>you story for Rev. Al Sharpton as to educate him on what is going on. We have help from organizations as well as the journalist that has been investigating and filming for over a year. It is now time to shake the tree. If you are counting on others to do this for you,it isnot going to happen. You will be living with your silence for a long time. We are strong and we will be heard.Get the message out! <
>Please go into the Contact Us portion of our site as it is secure and private. Leave your name and numbers or email We will forward them to National Action Network. They arent going to back down. Or email to arlene@dialysisethics.org<
><
><
>Arlene<
> Edited by: realdialysisethics at: 3/12/03 12:39:04 pm<
>
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brenda
Joined: 28 Oct 2002
Posts: 103
Posted: Wed Mar 12, 2003 10:27 am Post subject: them ba...rds
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They won't even bother to pick up the phone. I did manage to get an answering maching for one, but when I went to leave a message, the only sound I heard was soemone picking it up and hanging it back up. Damn they have no idea how much more that pissed me off. :"> Will get the people at work on this first thing in the am.
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Wed Mar 12, 2003 10:32 am Post subject: Use a dictionary!
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They are saying they don't know what an advocate is? Give me a
eak, let them look it up in a dictionary! I'm sure they know what the word means, and I'd also be willing to bet the network is just groping around for the "definition" of what THEY meant advocate to be because the unit has likely contacted them. Perhaps we dialysis patients need a new definition of NETWORK!!! Seems to me it means the units contact network and vice versa and give each other a heads up! :"> <
>Arlene, count on me to contact them; don't worry I'll be tactfull; I have a way with words Perhaps when I tell them I'm from Jersey they will realize how far spread "our" network is!!! Lin.<
>
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Worker Bee
Joined: 29 Oct 2002
Posts: 28
Posted: Wed Mar 12, 2003 12:14 pm Post subject: It is sad....
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I talked to Arlene this morning and it was really sad when we counted up how many of the original patients who started out with us on this fight and who educated us, are now gone. There is only 1 or 2 left. The others have died, usually within 2 years of first speaking up and standing up and demanding their rights. I ask that all of you not let their sacrifice be in vain. what is right or not. We at DE will not let this go. It is time <
><
>The ball is now in their hands and we wait to see if they do to take this to the end and if HCFA is the victim, then so be it. DE has been doing their and the Networks job for 4 years now. They get paid for doing nothing, but Arlene does this out of her own pocket. DE gets results, HCFA and the Network only end up with dead patients! The holocaust must stop and patients must not only be protected by the very government department that was set up to do so, but their choices in treatment must be available and rehabilitation provided as stated in the ESRD rules. <
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>Why is it that something like slow-nocturnal dialysis which has been proven to not only be better for patients, and cheaper for the government, not available? Why does the government still insist on paying the jiffy lube companies huge amounts of taxpayer dollars for killing dialysis patients in 3-5 years? <
> Edited by: realdialysisethics at: 3/12/03 7:05:10 pm<
>
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Lin
Joined: 28 Oct 2002
Posts: 337
/>
Posted: Wed Mar 12, 2003 2:19 pm Post subject: In my dreams
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there would be a new company; one that just offers home hemo. They would put all of their resources into training and caring for home dialysis pts. Pts. and their families would see that it's possible to do selfcare, and would leave the centers. The government would see the improvement in the health of these pts., and would also see that it actually costs less to provide homecare, and an added perk would be even less spent on hospitalizations due to inadequate care. The other big companies that alledgedly offer home hemo (sorry, choking on that one!) would have competition! Smack, oops just woke up. Must've been dreaming again. <
>However, me being a slightly suspicious person often wonders if the government actually cares at all; after all, if people die on dialysis the bill stops coming in. Lin. <
>
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plugger
Joined: 11 Jan 2003
Posts: 258
Posted: Thu Mar 13, 2003 2:46 am Post subject: time to help
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This is a great time for those who consider themselves in good units and us cranky relatives to show their support. :">
