Civil Rights and Kidney Dialysis

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More info can be found at: https://www.facebook.com/DialysisAdvocates

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I thought this first show went great!!!  And if you want to listen to it and learn about your rights and what to watch out for at the clinics, you can give it a listen at: http://www.blogtalkradio.com/nnia1/2013/10/02/lets-talk-dylasis

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About "Lets Talk Dialysis" radio show:
Last night's 2nd show featured an attorney, Joseph Santoli, being interviewed by someone who has been on dialysis and has been helped by Dialysis Advocates, a lady by the name of Abby.

Abby's story:
http://www.dialysisethics2.org/forum/index.php?topic=466.0

The subject was granuflo and naturalyte and the problems they caused.  Arlene Mullin Tinker hosted and Rev. Harris dropped by.

2nd show:
http://www.blogtalkradio.com/nnia1/2013/10/09/lets-talk-dialysis

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Dialysis Advocates had 4 patients on Tuesday and covered a variety of topics: staffing, for-profit vs. nonprofit, infections, length of runs, home dialysis, staff intimidation, dialysis in Texas, staff/patient ratios, experience with reuse, etc...

http://www.blogtalkradio.com/nnia1/2013/10/16/lets-talk-dialysis

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Thank you Plugger!

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You are welcome!  And I forgot to mention they also talked about blackballing.

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Hear about dialysis from a tech's perspective!  Arlene and Deborah interview a worker who has worked in dialysis since 2000 and has a relative on dialysis: http://www.blogtalkradio.com/nnia1/2013/10/23/lets-talk-dialysis

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Last night Arlene hosted and Deborah interviewed Willie, a dialysis patient from New York City who has seen the rough side of life in and outside of dialysis.  A mother of a dialysis patient was also on and a patient by the name of Griffin.  Rev. Harris also spoke about organizing.  As usual, another great show!

http://www.blogtalkradio.com/nnia1/2013/10/30/lets-talk-dialysis

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Last Tuesday's show featured Deborah interviewing patients Willie, Charles, and Larry Hall.  The first four minutes of the show Deborah gave out contact info and got a hold of the various guests.  They talked about how blackballing occurs, what to do if provoked, how Dialysis Advocates helped them, the importance of getting your records, and more!  Another show you don't want to miss!

http://www.blogtalkradio.com/nnia1/2013/11/06/lets-talk-dialysis

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Thank you Plugger!

             

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You're welcome!  I ought to mention Larry Hall was one of the people featured in this article from Propublica: http://www.propublica.org/article/in-dialysis-life-saving-care-at-great-risk-and-cost .  Propublica did a series of articles on dialysis sometime back, and for those who missed it here is the link: http://www.propublica.org/series/dialysis

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Last Tuesday's "Let's Talk Dialysis" show was called "Tricks of the Trade".  Deborah, Larry, and Charles talked about things the immature, bad seeds among staff would do when unhappy with patients.  Ever wonder what happened to the high school bully?  -looks like some of them are working in dialysis.

But let's thank those members of staff who have stood up to them and don't be afraid to call Dialysis Advocates:

Contact info:
http://dialysisadvocates.com/patient-contact/

The show:
http://www.blogtalkradio.com/nnia1/2013/11/13/lets-talk-dialysis

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Last Thursday some of us old school people got together to help launch the new school Dialysis Advocates.  This show featured Dialysis Advocates and Dialysis Ethics founder Arlene Mullin-Tinker, Lawyer/Journalist Carl Ginsburg, and myself - and of course Deborah hosting it.

http://www.blogtalkradio.com/dialysisadvocates/2013/11/29/lets-talk-dialysis

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Lets Talk Dialysis!


November 26, 2013, Tuesday

Show Title: "Dialysis Workers Speak! "

We were told by dialysis workers that they feel they were unjustly portrayed on our, November 14, 2013, Thursday, show. That show was titled, "The Tricks of the Trade"! We had patients speak about the abuses they endured at the hands of their caretakers. We welcome all points of view!

****Now is the time for the workers to have their say! If you are a worker at a dialysis clinic and you would like to respectfully speak on our show call 1 (347) 857-3961.


Show Times and Hours:
Thursday
6:00 pm Pacific Time (7:00pm Mountain Time, 8:pm Central Time and 9:pm Eastern Time).

Disclaimer: We at dialysisadvocates.com value all points of view.

http://www.blogtalkradio.com/dialysisadvocates

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Thank you Plugger!

Rerun, Moderator 

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You're welcome!

And another program:

http://www.blogtalkradio.com/dialysisadvocates/2013/11/27/dialysis-talk-dialysis-workers-speak

It was an informative show!  I've been watching this for quite a few years and I didn't know how you could get in trouble with these AMA's (form they give when getting off a machine early).  If nothing else and forced to sign, remember to put the letters "UD" after the signature: stands for signed "Under Duress".

Anyway, the show featured a tech Maurice - a person who has previous medical experience, Arlene a former tech, Charles a patient, and a guest patient.  Highlights I recall are of course the AMAs, how a person doesn't have to abide by a clinic's self-imposed chain-of-command, the importance of journaling and getting your paperwork, and the advantages of having cameras in the clinics.

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This week Chili Most - who was there when musical artist James Brown needed him - gave the show a religious flavor.  He talked about the upcoming "Stop the Violence" campaign coming up in January involving ministers worldwide!  We can all pray Chili will be successful in getting their attention about what dismissed patients are experiencing.  Dialysis Advocates founder Arlene, patients: Larry Hall, Willie, Charles, and host Deborah were all there!  Listening to the show a person might understand why some of these clinics raise fear in even seasoned war vets (no reflection on those staff we know are doing their best - wishing away the headwinds you face).  In news you can use, learn how you can refuse staff who are hurting you:

http://www.blogtalkradio.com/dialysisadvocates/2013/12/06/dialysis-talk-chili-most

list of latest shows:
http://www.blogtalkradio.com/dialysisadvocates

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This week's show was jam packed!  On the show were: special guest Alyssa - patient, and small business owner offering her surprises, Larry the Legend (nice ring to it), Deborah the host, a Guest who has been on dialysis 20 years, and me.

The talk was about catheters, bad sticks, dialysis company priorities, crit-lines, reuse, how to take control, what to watch (body signals were a big one), AND HOW HIPPAA FORMS CAN NOW BE DOWNLOADED!

And I will mention I threw out a quote about Dr. Belding Scribner.  If nominations were taken for a patron saint of dialysis, he would be my nomination (maybe we can get the pope involved in this).

This week's show:
http://www.blogtalkradio.com/dialysisadvocates/2013/12/13/dialysis-talk-what-i-wish-i-was-told-before-i-started-dialysis

Latest shows:
http://www.blogtalkradio.com/dialysisadvocates

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This week's show was an eyeopener!  Many patients got a chance to ask Maurice - a very knowledgeable and experienced tech - questions about their care and what happens behind the scenes at the clinic.

Discussions included: infections, the shakes during dialysis, arterial and venous pressure, blackballing, machine setup, meds, pulling fluid, asking questions, temperature settings, care plan meetings with staff which should occur once a month, alarms, HIPPAA forms and violations, trouble with dialysis prescriptions and attempts to use generic prescriptions, techs getting called to the office, questions to ask staff about your prescription, getting a printout of your prescription, getting a "Medical Release Form" (sounds like includes printouts and what has been said about you).

And to conclude, they mentioned: the importance of getting flow sheets, getting family and friends involved, and allying with techs.

This week's show:
http://www.blogtalkradio.com/dialysisadvocates/2013/12/20/dialysis-talk-dialysis-tech-answers-patients-questions

Latest shows:
http://www.blogtalkradio.com/dialysisadvocates

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I just wanted to let everybody know all the people from the "Dialysis Talk" radio show have decided to take a break until Jan. 9th.

But catch-up on shows you may have missed:
http://www.blogtalkradio.com/dialysisadvocates

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Break is almost over!  The Dialysis Talk show will be back this Thursday Jan. 9th at 6pm Pacific time, 7 Mountain, 8 Central, and 9pm Eastern.

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The title of this week's show was "Listen Up!", what patients would like to tell their clinics and associated organizations.  It was mentioned how staff could treat patients better, more respect could be shown, importance of taking charge of your treatment, how units seem to have the power over the doctors when it should be the opposite, nephs may know kidneys but not always the machines, how it is tough to get the networks to listen, cameras in the clinics, consequences of low blood pressure, imbalance of staff/patient power, what not to do when speaking up, knowing your body, going to a private doc to get your CDC blood test, individualized treatments, timely labs, asked staff to stand-up and be more knowledgeable, how clinics can knock a patient off the transplant waiting list, and getting DOCUMENTATION was mentioned: AMA sheets and flow sheets.

This week's show:
http://www.blogtalkradio.com/dialysisadvocates/2014/01/10/dialysis-talk--listen-up

Latest shows:
http://www.blogtalkradio.com/dialysisadvocates

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Thank you Plugger for ALL you do for us.

                   

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You're welcome!  Figure the least I can do at this point is a little advertising and getting the word out.

This week's show talked about an AP reporter who is looking into things and how this person can be contacted.  It was also mentioned again how religious leaders are getting involved.

The history of the networks was discussed and how in 16 years of advocating Arlene, a founder of Dialysis Advocates, hasn't seen the networks help one person!  Also discussed: how clinics are manipulating infection stats by sending patients to their primary doctor or ER so the clinics don't have to report an infection, the need for an appeal process, the lie that patients talking to patients is a HIPPAA violation, HIPPAA forms to authorize an advocate (see below), how the states and the networks are too close, and much more!

HIPPAA forms for an advocate (useful even if not using Dialysis Advocates):
http://www.cms.gov/Medicare/CMS-Forms/CMS-Forms/CMS-Forms-Items/CMS012207.html

More on forms, networks, and news:
http://dialysisadvocates.com/news/

This week's show:
http://www.blogtalkradio.com/dialysisadvocates/2014/01/17/dialysis-talk-the-esrd-networks-and-cms-leave-patients-vulnerable-to-abuse

Latest shows:
http://www.blogtalkradio.com/dialysisadvocates

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This title of this week's show was "Harassment in the Clinics" and the show has been increased to two hours!  It was emphasized not to argue and cuss; but to document, log problems, and file grievances with the clinic and the state.  Also mentioned was what might be put in your records, confrontations about not changing gloves, how patients have been pitted against each other, AND THE IMPORTANCE AGAIN OF GETTING YOUR FLOW SHEETS.  One patient told the story of getting kicked out after being on dialysis for 20 years (medical director who backed her up left the clinic leaving her with an FA who disliked her).  Other subjects were the ESRD networks not helping (have heard that one over, over, and over), and how you can call 911 if there is a problem.

Another patient also told how staff admitted harassment on a Facebook page that is new to me: Dialysis_Discussion_Uncensored.  Didn't get a chance to hear the whole two hours, but did also hear the importance of not signing off if a person gets off the machine early and rinseback was mentioned.

And finally there was a great story about patients throwing a party for a staff member who was concerned about patients' care and taught them what they needed to know!  (love to hear those stories)

This week's show
http://www.blogtalkradio.com/dialysisadvocates/2014/01/24/dialysis-talk-are-you-being-harassed-in-your-clinic

Latest shows:
http://www.blogtalkradio.com/dialysisadvocates