Hello, everyone! My mom has been at her new dialysis center for about three months, and the doctor and NP assigned to her are pretty terrible. We noticed that a former patient had their own nephrologist who came to the center to go over lab results and handle any dialysis-related issues. That patient has since had a kidney transplant and no longer comes to the center, so we’re unable to talk to them.
My mom has always had a doctor assigned to her by her center, but she’s very unhappy with the apathetic doctor she has this time around and would like to find her own. Has anyone else ever brought their own nephrologist with them to their clinic, and how did you go about doing that? We’re wondering if this can only be done under special circumstances or if it’s something that anyone can request.
Thanks in advance for any advice or stories you can share!
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As far as I know, in center doctors only have priviledges if they are associated with the center. Which means that if your nephrologist is a practicing neph at your center, then you can see them. If not, you have to go with who they have there. It really has to do with billing and CMS regs more than anything. For example, my neph is associated with the center I am at, which does only home training and respite. So I see her for clinic once a month and she prescribes for me. She also is associated with one center for in-center treatment, but it is not the one I would go to if I did in-center. So what this means is for me, if I want to see only her as my provider, I have to go where she goes. And....I just found this out, when I try to contact her through MY Chart, which is NOT affiliated with the center I use, they will not allow the message to reach her..... silly isn't it? Again, It is all about the $$$$$.
Thank you for sharing! There are a few doctors associated with my mom’s center, but they’re all pretty hands-off with the patients. They just walk up to you, ask if you need anything, and then leave…they only spend around one minute with each patient, sometimes even less. My mom actually has to point out to the doctor and the NP when her labs show something out of range, otherwise they just tell her everything looks fine and walk away. I’m hoping we’ll have other options…
Wow, that is not right...they are probably billing for a clinic visit each time they do that. They are SUPPOSED to see each patient with the social worker and dietician and the nurse in charge once a month. They are supposed to go over the plan of care and the PATIENT is supposed to sign off on it. Then they are supposed to review the labs and prescribe anything needed. Something is very wrong. Who is the company that runs it? Is is DaVita..... because they are already in hot water for stuff. There should be a form your mother got about how and who to complain to. They HAVE to give it to you. Thats a CMS regulation. You can ask for it as a caregiver, or family. That will shake them up.
Yes, it’s a Davita clinic and they certainly seem to be cutting corners. My mom has even reported seeing another doctor arrive through the back door, check his phone, then walk through the clinic and out the front door without talking to a single soul. I sincerely hope he’s not charging Medicare for that…
The doctors do come around once a month (NP is usually twice a month, dietician and social worker are once a month) to “go over” lab results, but it’s just a one minute visit like I described above. They never speak to the patient as a group, since they’re rarely in the clinic at the same time. The worst part is that they don’t seem to even look at the lab results before they speak to you—everyone in their opinion is “doing fine,” even when the lab results clearly show otherwise; the PATIENT has to be the one to ask questions and point things out to them. My mom received a copy of her plan of care in December, and we expect to receive an updated copy in three months. However, I don’t think she was asked to sign it.
They have a flyer posted in the lobby that lists the grievance procedure, including contact information for the area’s ESRD Network office.
This is very disheartening. I honestly think we won’t see this sort of mess improve until most dialysis patients receive dialysis at home. There is no way it’s more dangerous to administer dialysis at home than in center. It’s just not promoted in USA because for profit dialysis clinics and doctors who are benefitting from partnerships with them don’t want the system to change. IMHO
It’s interesting that so many countries report better dialysis results than USA; even those in third world countries. By far the majority report in hime fialysus as the primary dialysis delivery mode. At least this was the case the last time I researched this issue.
Is there any way your mother could shift to in home dialysis delivery?
We’re honestly a bit nervous about doing it at home without a trained medical professional nearby. (What if something goes wrong with the machine? What if she starts bleeding out? What if I hurt her when I try to insert the needles?) However, at this point, we might just have to go that route. We’ll likely try transferring to a nearby Fresenius clinic first, but we’re starting to do our research on home HD in case it comes to that.
Are you or someone you know on home HD right now? If so and you don’t mind, would you share some of the issues you’ve come across?
I was one of my dad’s in home HD care providers over 45 years ago. We never had a problem with bleeding. We had technical suppprt 24/7 for machine issues. I believe that support us much better today. No infections. Frankly, no issues at all as far as administrations HD at home. It’s so much safer than most realize.
That being said, the hospital dialysis programs where I live all use Fresenius centers.
Thank you for sharing your experience! How did monthly labs work? Did your dad have to go to a center or doctor’s office to have blood drawn and go over the results, or did someone come to him? Was he able to choose his own doctor, or was one assigned to him?
He lived in a very small community in southwestern Kansas. His nephrologist was across the state in Wichita. He went to a neighboring town, about 25 miles away, once a month for labs. At that time they had him stay over night for labs. That likely wouldn’t be the case today. They would send his labs to his nephrologist in Wichita. Twice a year I took mom and dad to Wichita where he stayed in the hospital for a week for labs and other tests. Again, this was over 45 years ago…
There were very few nephrologists in Kansas at that time so you had to travel to them. You stayed with your nephrologist for all your treatment even when in dialysis. With many more nephrologists available today and for profit dialysis centers, the infrastructure for all of this has changed. However, my regular nephrologist does provide dialysis care for all his patients. He also wants them to choose the dialysis center they prefer. It took me some time to find him but there are still nephrologists like him in practice. He also has experience working as a transplant center nephrologist. He really is excellent.
First thing you need to research and find a doctor. It also depends on your insurance coverage. I currently use my own doctor and I am working towards being put on the kidney transplant list. You and your mom need to be strong and firm and be an advocate for her health. Dint give up its gets better.
Thank you so much for your advice and kind encouragement! We’ve asked the clinic for a list of doctors who have privileges so we can begin doing some more research.
That’s wonderful to hear! Once a patient builds rapport with a doctor during the early stages of ESRD, I wish it was easier to continue seeing that doctor when the patient starts dialysis. I’m glad you’re working with someone who knows you well and will continue to do what’s best for your health.
Overall the Nephrologists at my center rotate, some are very good, friendly and answer questions, others just go around with a clipboard and barely even seem to notice you. However there is a really excellent NP who has a great rapport and handles my prescription needs and along with the nutritionist goes over monthly labs in a detailed manner.
Yes, all it takes is one! At my mom’s last clinic, all of the patients saw the same doctor. He was just as apathetic as her current doctor, but thankfully there was a truly spectacular PA at that location who always took the time to answer questions, go over lab results, and check in on everyone. If she saw something she didn’t like in your lab work, she would sit down and talk to you about it, for however long it took to make sure you understood what the issue was and how she was going to adjust your treatment to address it. Even if she had to come in on her day off because a patient wasn’t feeling well, she made sure the patients knew they could reach out to her whenever they needed her.
Every patient needs and deserves to have someone like that looking out for them.
That is truly awful. There appear to be 3 doctors, including the one I have had for years prior to starting dialysis. I've spoken to all 3 and some are much more friendly but none act like this. My center is independent and I'd rather drive an additional hour than go to the local Davita. As for paperwork I've had to ask for a copy of my lab results before but they now give them out to everyone each month. I see the social worker and dietician come into the center frequently but I haven't needed them. I did have to ask for my plan of care. I'll see what I get in a few months. All of the nurses and techs answer my questions and are friendly. So far I'd rather do in center there than at home but that's cause of my situation.
I’m glad to hear the staff at your center are taking care of their patients. My mom used to receive treatment at a Fresenius clinic before we moved, and while they also had some issues, we’re quickly learning that Davita is a lot worse. The closest Fresenius clinic is a little further away from us, but we’re strongly considering transferring back to them.
My hubby went to a DaVita clinic when his kidneys failed. We discovered that nephrologists only have or seek privileges at a few clinics, they don't visit all of them. My hubby's nephrology practice with 4 doctors sent him to their DaVita clinic close to the hospital. They also told him he could go elsewhere but he would then be under the care of another nephrologist(s). Since he liked his nephs, he went to the one they frequented. While he was on hemodialysis there, he saw one of the doctors from that nephrology practice on a weekly basis. Later, when he went on peritoneal dialysis done at home, he saw a doctor monthly. So why aren't there lots of nephrologists going to the various clinics? There's probably any number of reasons, but I suspect most don't have the time. In our experience, my hubby's nephrologists saw patients at various places: their brick and mortar office, then at "their" dialysis center where they kept an actual office, and also at the hospital. So they were constantly hopping around and on the road. When we moved to another, very small town, this same practice also had privileges at the DaVita center in that town. However, only one of the nephs (his favorite) travelled there, the rest couldn't manage it. He was always treated very well at both DaVita clinics. I honestly don't think any dialysis company is worse than another - it really depends on the multiple factors; e.g. availability of skilled workers in the area, the interest and schedule of the nephrologists, the director of the center, and more. I do know they are all carefully monitored by Medicare. If one sees problems, I suggest brining the complaint to the director's attention. If that doesn't work or doesn't seem possible, simply contact the the complaint number that all dialysis centers must post in their building. Medicare has steps in place to rapidly fix the situation and can essentially close them down the center if matters aren't fixed. Of course, one always simply leave and go to a completely different center. In that case, if one knows and likes a certain nephrologist, I would ask that individual which clinic he/she visits and go to that one if the location works for you. Your voice matters. Don't be afraid to ask questions. Improving and/or navigating dialysis clinics is a process. I hope you and your mom find a great solution!
Thank you for your advice! We moved to a new state about three months ago, so we’re essentially starting over when it comes to finding new healthcare providers for my mom. There seem to be about 15 different nephrologists associated with the clinic (though only a handful come by when my mom is there), so we’re going to look through reviews to see who others have had good experiences with. Hopefully we can find someone she feels comfortable with.
Wow - 15 different nephs or so to pick from is awesome. Hope you can find one that appeals to you and your mom and that your schedules mesh. It's awesome that you are supportive of your mom
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