Has anyone else had a horrible experience with treatment from their clinical staff
Have you been treated badly by your clinic... - Kidney Dialysis
Have you been treated badly by your clinic staff or doctor?
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Vacuumnerd
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23 Replies
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cs65NKF Ambassador
You do have options if you were treated badly. You can register a complaint in your center's grievance box, which has to looked at and dealt with by the center's grievance committee. You can also complain to your center's clinical manager and if there is no real response you can contact your center's IPRO ESRD Network who will contact and deal with the clinical manager. They work with CMS, the Centers of Medicare and Medicaid Services. I know this because I am a PAC representative for Network 1 of New England. Contact your center's PAC Rep. for the number to call.
I’m not sure if there is anything I can do about a situation I experienced recently but will mention it to get your thoughts.
My last nephrologist’s office told me to talk with the nurse who runs the dialysis clinic with which they work about a PD cycler I hoped to use. It has both audio and visual directions. I have a low vision impairment so thought that machine would work better for me with the audio directions. It’s my understanding that there is only one PD cycler that has audio directions...
I shared with the nephrologist that the nurse who runs this clinic has said that they only use a Baxter pro choice machine so that’s what I’d have to use. My nephrologist said that if I needed the other cycler that that’s what she’d prescribe and the center would use the machine she prescribed. She then encouraged me to talk with the nurse, Celia, about this cycler situation.
When I talked with Celia I was told that they only use the Baxter Prochoice. I then shared what my nephrologist had told me. That seemed to surprise Celia. She then called two other Davita clinics in my area of the metro. Neither used the Amia machine. But one was willing to visit with me. I found that conversation to be helpful. In short, they could train me on the Amia if I had the cycler. At that point I was hopeful.
Celia called me within 5 minutes of my conversation with the other clinic, the one to which she had referred me. When I answered the phone Celia said that the clinic she runs would not be able to accommodate me. She then abruptly hung up.
This shocked me. I have no idea why she did that. But she knew when she did that that I’d be forced to find a different nephrologist because my current nephrologist works only with the clinic she runs in this area of the metro. So by denying me access to the clinic she runs, I’d be forced to find a different clinic. That would also force me to switch to a different nephrologist. And all of this would happen at the moment in time when I needed a PD catheter placement surgery and then start dialysis.
I’ve managed to navigate this mess. I have a new nephrologist. He’s very good. But I’m still shocked Celia did this to me at such a critical point in my care. And all because I asked a question about a cycler that works better for me due to its audio and visual directions. I wasn’t angry or upset. I wasn’t mean nor inappropriate. I merely asked a question. This could have been very dangerous for me, I.e., forcing me to suddenly switch nephrologists and dialysis clinics at that point in my care—the moment I was to start dialysis. It seems very inappropriate. But perhaps I’m not realistic.
I’d appreciate your thoughts and any guidance you might give me.
Jayhawker
I am going through this with my mother right now. She asked to see her clinics policies and procedures regarding keeping patients safe with Covid-19 since some of the patients in there got it and they threw her out. It is a horrible experience. We are hoping she gets a new unit this week as she has been working with a placement agency. But she too will have to get a new doctor.
I don't understand how clinics can deny people life saving treatment. Plus, what do they have to hide?
Well, I certainly learned my lesson. Next time I’ll have my low vision specialist jump in to help. This is an ADA issue for me with the low vision impairment. The nurse who runs the clinic may need to learn that she must comply with the Americans with Disabilities Act.
I did mention what had happened to me in my first appointment with my new nephrologist. I made it clear that I had learned my lesson and certainly wouldn’t ask questions again. However, I’m tempted to report that nurse to Medicare as well as to Davita (it’s a Davita clinic). I’m just not sure how much more trouble that could cause for me.
These fir profit companies are making a lot of money off dialysis. I’m shocked at their lack of professionalism and so forth. I’m also shocked that the nephrologists put up with this. They’re loosing patients over this sort of thing!
Jayhawker
What you experienced was an Involuntary discharge. The only 2 legal reasons for "firing" a patient from a specific clinic and/or nephrologist is1) failure to pay billed charges
2) violent/disruptive behavior
Generally an ID occurs due to personality clashes, failure to come to txs etc, ALL of which are not legally acceptable. It happens, far more often than we like or realize. Often this can lead to a patient being blackballed from a dialysis community (area). You'd be surprised how quickly the rumor mill spreads in these cases. If you have a grievance follow the chain of command by
A) contact charge nurse (do so in person and in writing) with complaint (include social worker)
B) Contact the facility Administrator (again in person/phone and in writing).
C Contact the area or regional director for the facility
D) Contact your ESRD Network for your region.
ESRD Networks are contracted by CMS to oversee all dialysis and transplant centers in compliance and more in a specific area of the U.S.
It should be illegal to prevent a patient choice of machine. Sadly it is not.
Blessings
Is your mother totally off dialysis right now? If so, how long has she been off treatment?
Apparently these clinics can deny treatment for nearly anything.
Jayhawker
Luckily she hasn't missed any treatments yet. As we went above the unit and they gave her an extension to find a new unit/doctor. If everything works out she should be placed today. This week would be the first week she would miss. But yes. Dialysis is big business.
I believe the staff only act the way they do because the clinic manager acts in such low quality and i tried to call her superior but i think she has got in her ear from the last time i complain about the same issue and now she is not answering or returning my calls
Do all clinics have a patient group to handle these complaints?
Jayhawker
I am not sure about that. I started with being a PAC representative for ESRD Network 1 of New England. We are now in a larger group including the Network for New York state, the Ohio River Valley and the Mideast states. I can reach out to my Network to try to find out more. The grievance committee at each center is not made up of patients, but they are required to investigate all written grievances. I was also on my dialysis center's QAPI committee (Quality Assurance Program Improvement) as a Patient Representative, and we did hear about numbers of grievances and whether they were resolved. I should note that I went to a dialysis center run by our local hospital, not a for profit clinic. I am now a kidney transplant recipient, so I am not in as much contact with patients and staff there, but the social worker and I are trying to restart our patient support group via conference call in February.
Simply put no. I have yet to be part of any clinic that has a "grievance box", lol. esrdnetworks.org/
Refusing to allow treatments via a specific machine/denying accessibility to a patient is a widespread problem. The higher ups make it a rule (usually $ related) and one is left to find another clinic or accept a non choice machine. In 2018 I was forced off a home hemo machine and on to NxStage. The subsequent problems of metabolic acidosis has left me physically and mentally debilitated. The clinics refuse to allow access to any other HHD machine because of clinical rules and protocol. Interestingly thousands of other patients have had similarities and were forced in center because clinics refused to give true individualized treatment. It should be illegal but it slides by relentlessly.
I recently moved to Missouri, New nephrologist, New clinic, New HHD program. Still just as backwards thinking as ever.
Sadly this tends to be the status quo.
Blessings
Fortunately I have found a clinic, Fresenius rather than Davita, that uses a variety of PD cyclers including that which provides both audio and visual directions. It’s also actually closer to my house. So my problem seems to be solved. I won’t know for sure until I need to start dialysis. So I believe I’ve git s happy ending on this situation.
However, it has been an eye opener. I’ll certainly be nothing but compliant from this point forward. Of course we realize that Celia will have spread bad information around about me. She works with Davita though so I’m hopeful that it hasn’t travelled to the Fresenius clinic.
I do think the nurse practitioner didn’t help me out with this situation. She literally counseled me to visit with Celia. Obviously that was a bad idea, although, I’m so much happier with my new nephrologist so believe this has actually worked out well fir me after all. But what a mess.
Jayhawker
I just found the website esrdncc.org, which is a map of all the ESRD Networks all over the United States and also the U.S. territories! It includes contact numbers for each one, so wherever you live you can contact them for help with unresolved grievances with your dialysis clinic. The proper way to file a grievance is still to fill out a grievance form and place it in your clinic's grievance box to allow the grievance procedure to begin. If you get no satisfaction from your clinic, then feel free to call your ESRD Network, depending on where you live. They will intervene for you.
Thanks, I’ll see what I can figure out with this situation.
At this point my new nephrologist has restaged me to low Stage IV rather than stage V. He definitely does not think it’s time for dialysis. So, I am not working with any dialysis center right now. (I actually think this very stressful situation has worked out for the better for me, thankfully.)
However, I’m still shocked that the nurse who directs the center I mentioned in my initial post so quickly determined that her center wouldn’t serve me. She knew what that would do to me: I’d have to scramble to find a new nephrologist as I was needing PD catheter placement, etc. This was both stressful and dangerous. It just seems as though this shouldn’t happen when the patient had been encouraged to talk with the clinic nurse about various options for PD cyclers. Again, the issue is a low vision impairment that would lead me to select a machine with both audio and visual directions...
Frankly, not allowing me to use that cycler could be a violation of the Americans with Disabilities Act (ADA). That would be in addition to any medical legislation her actions may have violated. So it seems very ill-informed and just unbelievably cold-hearted. Then I begin hearing stories from others and started to realize that this may be a fairly common problem rather than a unique circumstance.
Obviously we’re just supposed to shut up and comply. Ugh...
Thanks for your information.
Jayhawker
Comply = ObeyThe parental mode of thinking in Healthcare is rampant with patient blaming and shaming and demands for compliance no matter what is asked or who is asking. I heard on a show once a doctor say " all patients are liars", but doctors and nurses are well trained in deception." Ironic no?
Compliant is a 4 letter word to most patients.
I could tell you plenty of stories. At the moment I'm dealing with my new clinic who has told me if I want to end my tx early I MUST FIRST contact clinic and request permission! What a crock.
Sigh
Blessings
Well, I’ll get better at dealing with this. It was just such a shock.
Jayhawker
Dear Jayhawker, I remember you saying that you had vitamin D toxicity. How did you know and what symptoms did you have?? I think I may have vitamin D toxicity and don'' know what to do. Please advise. Thank you. susan
Yes, my toxicity was very severe. It was caused by a medication I had been prescribed.
My symptoms were identical to what we’re supposed to experience indicating the need for dialysis:
Fluid retention
Very bad itchy skin
Metallic taste
Nausea
Loss of aperture
Headaches (mild)
Foggy brain & concentration problems
Exhaustion (slept a lot)
This went in for 8 months getting progressively worse. I live alone with no family. Eventually I was unable to cook for myself, etc.
A nurse practitioner finally checked my vitamin D level. It was over three times higher than the upper end of the average range. It took 5 months for it to return to normal.
I’m feeling much better now. My renal panel data has returned to what has been normal for me in recent years (GFR16-17). I’m still pretty weak though. I’m gradually rebounding. I currently walk 2/3 mile a day (1/3 in the morning and 1/3 at night. Before the toxicity I walked 2 miles a day. I’m also doing a light 24-minute workout on my recumbent elliptical machine daily. Before the toxicity I did 2 30-minute workouts at the mild level.
I am cooking for myself again. I expect I’ll be back up to full speed by April 15th. I discontinued the medication last July. It has been a long road back.
Jayhawker
I have the same symptoms. Were you taking Vitamin D supplements?? I was and too much.
No, I was put on a prescription medication, Rsyaldee, hat elevated my Vitamin D levels.
Jayhawker
I have had and am still having horrible experiences with my doctor and dialysis nurses.
Change doctors..That is what I did. My nephrologist was the worst!
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