dialysis patient
Joined: 10 Feb 2003
Posts: 5
Posted: Mon Nov 10, 2003 9:33 am Post subject: re: Bill Peckham
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Bill, this is nothing that I have not seen before. What I am trying to tell you is the NKF & AAKP can play a more active role in preventing contract & dumping. At a clinic what you have posted means zilch.
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Bill Peckham
Joined: 06 Jan 2003
Posts: 65
Posted: Mon Nov 10, 2003 1:20 pm Post subject: Conditions of Coverage
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I wouldn't say the Conditions of Coverage mean zilch. I posted them because those are the rules a provider agrees to follow by accepting Medicare payment. I know that there is a hole here because when a provider acts outside the spirit of the rules there isn't a clear appeal path, however, I can't see where there is a role for the AAKP. What standing would the AAKP have in matter between an individual patient and their unit?
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laba
Joined: 10 Nov 2003
Posts: 2
Posted: Mon Nov 10, 2003 1:37 pm Post subject: Mission
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We are advocating for those things that we think that needs to change for quality care.<
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>Everything on that list above is what we see as obstacles to improve conditions and treatments for the dialysis patient.<
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>There are group of patients that are afraid, to complain to management, networks or survey units. Just the fear is reason enough that something is wrong.<
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>It amazes me that the NKF nor the AAKP can not see that bona fide organization that there is some responsibilty to eliminate that cloud of fear that is felt by patients.<
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>How else can patients be made to feel safe other than to have changes made by which that they are free to express themselves without retaliation than to have organizations of advocacy groups join to support the hard issues of the patients.<
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>The organ transplant issue is an important issue,but a safe one. Its a safe issue because it requires public education which results in the willing donation of a donor.<
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>The hard issues are those pretaining to making changes so that the patient is empowered to make decisions about their treatment.Another hard issue is patient rights.Th right to make a choice in treatment.The right to participate in the treatment plan.The right to be treated by skilled staff. The right to be safe. The right to imformation on the facility in which they are treated. These are hard issue that disturbs the industry. And that is just a few.<
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>Another hard issue is the Networks,in that they are not assuring that there are timely changes to benefit the dialysis patient. But from the posting I am puzzled that these issues are not seen as significant enough to be addressed by AAKP and NKF. What are they educating the new patients in? All patients do not benefit in the same manner in education.How do you educate?What good does education do, if a patient is too fearful to use such or question when something is not taking place.<
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>Organ donation is a worth while project.A question is does the process include an effort to assure that the drugs are available on a long term,thru the life of the organ after transplant.<
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>The majority of the dialysis patients at this point are not transplanted. While we try to increase organ tranplant, we still have to safeguard safe and quality treatment of the majority of patients in these clinics.<
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>We will continue our effort to effect change that will benefit a greater number of dialysis patients.<
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>AAKP has its agenda,and we will continue to do the hard issues that are popular or safe to the industry.<
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Black Sheep
Joined: 10 Nov 2003
Posts: 1
Posted: Mon Nov 10, 2003 1:43 pm Post subject: Conditions of coverage
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You have hit on a real big issue. It is true that the network and providers have signed agreements relative to treatment and other related services. The problem is that the conditions are not being adhered to.So what does AAKP do? Nothing?<
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Curious
Joined: 02 Feb 2003
Posts: 39
Posted: Mon Nov 10, 2003 1:49 pm Post subject: The works done now!
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It appears that the work is done by DEO.
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I understand
Joined: 10 Nov 2003
Posts: 1
Posted: Mon Nov 10, 2003 3:30 pm Post subject: Clearer picture
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It makes sense to me the difference. Would they pick one off the list?
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Thu Nov 13, 2003 2:02 am Post subject: Reporting
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One day I was walking by the nurse's station and overheard DON mention that she was calling "Sue" from network. I thought to myself gee, the DON knows these people on a first name basis; I don't! Then I thought (as my mom used to say) maybe they are in kahoots.<
>As to the AAKP, I don't think most pts. are in the AAKP. Most aren't even able to attend meetings. There is a poster in the waiting area announcing meetings and the location. I thought about going but I already drive 45 mins to an hour, and the meetings are another hour from the center and at night. They can't even begin to know how pts. feel or what they put up with if most of the pts. can't attend meetings. <
>If they really do want to change things and really get in touch with ALL the pts. they should come to the different units and hold some meetings there, not in some medical center away from dialysis pts.. Lin.
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leadsag
Joined: 31 Oct 2002
Posts: 263
Posted: Thu Nov 13, 2003 3:54 am Post subject: deo
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Is DEO sending a written response to the Senate Finance Committee ?
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Really
Joined: 08 Nov 2003
Posts: 2
Posted: Thu Nov 13, 2003 9:34 am Post subject: AAKP
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I'd love for someone from the AAKP to come on here and tell us what the AAKP is about and does for dialysis patients. I'm a dialysis patient of many years and I've never once met anyone from the AAKP, have never been invited to a meeting, know nothing about any meetings being anywhere near where I live (because would it make any sense for someone with ESRD to have to travel to a distant location to attend meetings -Really?!). <
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>How many units educate their patients? If the staffs are barely educated themselves ( because we know they are only minimally educated) how are they going to educate the patients? <
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>Isn't it clear to most that the object is to keep the patients dumbed down?! Keep them stupid so they won't know that they aren't getting quality care. <
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>So, no, there isn't any credible education in most units, support groups, and groups like AAKP are just bogus false fronts with Industry connections. <
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>Come on, I dare someone to come on here and tell us all the good that AAKP does. AAKP is like a snobby sorority. How would disabled patients on dialysis afford to travel to their annual meetings? Are their meetings only for the priviledged on dialysis? Who is on their board? Their literature is lousy - nothing about the reality of how to get safe care in dialysis. What kind of joke is the AAKP?!<
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>Not
just the AAKP, but the NKF. Are there any more kidney associations? Where are the patients that are mebmers of these groups. I see one person whos posted about it. Tell us what AAKP or any of these other organizations are doing for kidney patients, how these groups are accessable to patients and making a difference in their lives? You say it's not their job to do anything about the conditions in dialysis and the dumped patients who are left to die??? Please tell us what good they do.
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Bill Peckham
Joined: 06 Jan 2003
Posts: 65
Posted: Thu Nov 13, 2003 11:01 am Post subject: AAKP
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You can ask me anything you want. <
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>The Association has one convention a year, it?s a big country, so yes people have to travel. I think this last Labor Day 80 or so of the attendees had dialysis during the convention. It isn?t easy to attend, it costs money and time but really, what is the alternative?<
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>The AAKP has about a dozen chapters, it?s a big country, so yes most people do not live close to a chapter. Keep this in mind though - the AAKP is an Association of Kidney Patients. In other words people just like you. Every one of the chapters was started by a patient, not an easy task, anyone who starts a chapter has really accomplished something. It would be great to have a chapter in every state, in every city but really how could that be done?<
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>When you say their literature is lousy, what publication are you thinking of? The AAKP takes their publications very seriously, specific comments and constructive criticism is always welcome.<
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>There are 300,000 kidney patients in the US, each year 90,000 people start or return to dialysis. The AAKP has about 5,000 patient members about 1 in 60, perhaps that explains why you are not aware of meeting a member.<
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>The AAKP's website is:<
>www.aakp.org<
>Many of your questions could be answered there.
