DialysisEthics2_Forum
Other => Historical Posts => Topic started by: admin on October 01, 2009, 07:37:57 PM
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aprnjam
Joined: 28 Apr 2003
Posts: 85
Posted: Wed May 14, 2003 8:17 am Post subject: Standing Up For Our Rights
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I'm fairly new here, although I've had kidney disease most of my life. I was born with Alport's Syndrome, and I am xy dominant, which means that I can pass this disease on to either male or female or children. At the time my son was born 32 years ago, I did not know that I had Alport's, because no one had bothered to perform the biopsy. I only found out in 1989. When my son was biopsied, he too has the disease. I can tell you that my health care regarding my renal issues has been ignored for the majority of my life. I was never followed as I should have been. After the diagnosis was confirmed by biopsy, with each new PCP (my husband was military so we moved frequently), I told them I had Alport's, xy dominant, and wanted a referral to a nephrologist. Each PCP told me, "Only 1-2% of women end up in ERSD, so you don't have to worry, and you don't need to be followed by a nephrologist." So I could never get a referral. Over the past year, the mild renal insufficiency has increased to chronic renal failure, now to pre-dialysis. Someone referred me to this website, and although I have worked in the healthcare field for the past 7 years, I had no idea that dialysis patients were treated in this manner. This treatment makes me so angry!! Everyone has rights and to be treated in the manner that people are describing on this website is appalling to me as a person and as a healthcare provider!<
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>I have been on the Boards of several small nursing organizations and have learned one very valuable lesson. The way you get heard is to make noise. You complain, you write letters to your senators, congressmen, both federal and state, and anyone else that you can think of. You inundate them with your complaints of how you are treated. The more letters they receive, they begin to take notice. Five years ago, the National Conference of Gerontological Nurse Practitioners was a group of 200 members, who everyone ignored. As a member of the Executive Board, we decided that we were going to be THE source for geriatric information in nursing. It took us five long years, but NCGNP is now THE source for any topic for geriatric nursing. We have testified in front of Congress for geriatric care, we have developed training courses for other nurse practitioners so they can learn the differences in assessing and treating the geriatric patient. When I began as Treasurer, we had a budget of 30K/year, now it's 500K. Our membership now exceeds 1,000 members.<
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>So, what we need to do, is start a grass roots movement here. We need to write our state and federal congressmen and senators to start, telling them what is going on in this industry. We need to inundate their offices with letters from all of us. The squeaky wheel gets the oil. I am willing to write the basic letter, post it to the website, provide a link to where you can find the e-mail addresses for your state and federal representatives. All you have to do is go the website, find your state and federal representatives, copy/paste the e-mail I've written, and add your name/address/phone number so they can contact you and it's done.<
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>The question becomes, yes, it is a risk. But you have to take risks to protect your rights. How many people have taken risks to protect the rights of others. If everyone will give me an idea if this is a yea/nay item. I'll get started on the letter. There is power in the masses. We can do this! We can change things!!
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a campaign
Joined: 14 May 2003
Posts: 1
Posted: Wed May 14, 2003 9:10 am Post subject: like this
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was already held. Members of the Senate and their staff interviewed many patients and dialysis staff. The Senate Hearings on dialysis of 2000 were held and the Industry was totally exposed. Members of this group spoke before the Senate. Are you aware of this? Have you read the transcripts?
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aprnjam
Joined: 28 Apr 2003
Posts: 85
Posted: Wed May 14, 2003 9:48 am Post subject: Re: like this
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I haven't read the transcripts, where can I get a copy? My question is, if they were exposed, why wasn't something done about it? Nothing appears to have changed, from the posts I read here, everyone is still afraid of getting dumped, afraid of the retribution they will receive for any complaints that they may have. Sorry, but this just makes me so angry for patients to be treated in this manner. In my opinion, there is no reason for a patient to be treated this way. I just got dumped from an orthopedic doctor whose recommendation was for me to go back to the doctor who did the original surgery. Well, that's all well and good, but he's in WA and I'm in KY and it's not financially feasible for me to return to WA for 6-8 weeks. So I know what it feels like to be "dumped." I'm mad as h--- about the way I was treated, so I know how the dialysis patients must feel. My risk wasn't near that of a dialysis patient being dumped, but NO patient should be treated this way! If they were exposed, why wasn't something done about it??? Why haven't things changed?? I just don't understand.
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There
Joined: 14 May 2003
Posts: 1
Posted: Wed May 14, 2003 10:13 am Post subject: have been
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a number of posts surmising the corruption that must exist between the dialysis corporations and the govt. I myself talked with the OIG (pre hearings and was told they are fully aware of the situation and it is caused by greedy doctors and companies. Was told they get calls from the honest doctors wanting them to do somethng about the greedy ones. So, I was left with the impression that they were going to do something. So far.. nada.<
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>I have told you before aprnjam and I'll say it again - I'm glad you're here! Few and far between have been the higher level medical people who advocate on this board or anywhere publically. I hope you can get your nurses association to work on this cause.
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plugger
Joined: 11 Jan 2003
Posts: 258
Posted: Wed May 14, 2003 10:58 am Post subject: your letter
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Aprnjam,<
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>Over the years we have written federal reps, CMS bureacrats, 60 minutes, 20/20, Reader's Digest and put out flyers. We have had protests/rallys/memorials in Phoenix and Denver. And there is probably more I'm forgetting. And yes, we will keep writing and informing till something is done.<
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>I'll second being glad you are on board! (and willing to speak up) I put up a website to introduce people to dialysis who may not know anything about dialysis, but may care about the issues. I've given the site to people at church and put it in a letter to the editor recently (local paper).<
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>I've got a sample letter in there I wrote, but I meant it more in support of bill HR1004. If you would also like your letter to go on my site, I'd let Arlene give you my email address.<
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>sky.prohosting.com/cschwab <
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>
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aprnjam
Joined: 28 Apr 2003
Posts: 85
Posted: Wed May 14, 2003 3:33 pm Post subject: Re: your letter
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I'm willing for my letter to be posted anywhere that it will help and get attention. I am willing to take any risk that is necessary to change things. Right now, I'm not on dialysis, so I don't have to worry about being dumped. I certainly understand everyone's fear, because it is a life-threatening fear. Right now, I'm in the position to open my mouth and get on my soap box and I have no problems doing that if it will help. But I need help, I need to know all the information that I can to back up what I'm saying. I have your posts, and that helps, but there are times that I may need more information from some of you about a specific issue. If you are willing to share some more specific information (I can assure your identify will remain confidential).<
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>In order to maintain my board certification,
I am required to either take 300 hours of continuing education and I can achieve one half of these credits by having an article published. I have published several articles in various nursing journals, and while this may not be a topic that the publisher wants to actually publish, it will go to at least 5 reviewers, who may in turn visit DEO's website and also become advocates. Anyway that we can get more medical people involved is getting more medical people involved. I will write it from a personal angle, using information that some of you can provide to me, if anyone is willing. Nursing journals are publishing more and more "general interest" stories. I will post it here, so that everyone can read it, and make suggestions for change before I submit it to any journal for publication. I will likely take some criticism from some dialysis nurses, but I don't care about that. That only fuels more interest if people write the Editor about a published article. If anyone wants to help by giving me some information about aseptic technique, being dumped and being treated disrespectfully, contact Arlene for my e-mail address. There is more than one way to skin a cat as my grandmother used to say. I will also post a note to NCGNP's website about DEO and hopefully we will get some action from the members there.
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Senate Hearing Books
Joined: 15 May 2003
Posts: 1
Posted: Thu May 15, 2003 7:13 am Post subject: The Library of Congress put out the full testamony
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You can ask any of your Senators for the testamony. It is more comprehensive.<
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>Just ask your Senators or US House Reps for the following;<
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>US Senate Committee on Aging<
>Senate hearings on June 26,2000\<
>Title: Dialysis Patients at Undue Risk.<
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>They will give them out free,or tell you the phone number of the government printing office.<
>I know it is in the archieves....will check.
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