Kidney Treatment Centers

[kitkatz]

Why are there no treatment centers that treat the entire patient holistically?
There are the Cancer Treatment Centers of America that give their patients all sorts of holistic people to work with.
Kidney patients get a nephrologist, a social worker, a dietitian, and a dialysis center, often picked out of thin air.
However in my experience these people are not exactly working together.  I have seen care plans where everyone fills it out separately and the patient is handed it to sign without reading it.
My last care plan was so damn generic I laughed as I read it.  Just generic goals, nothing really personally pertaining to me.
Now I know it takes time to write these things, but they really need to be tailored not generic.

Besides if there was a treatment center for kidney patients it could have good information to give new patients and to help them plan where to go and what to do as their disease progresses.
I feel like the kidney community is a lot of pieces all working independently of each other and if we were better connected we could be a force to be reckoned with in the world.

Davita and Fresenius are the top 2 dialysis companies, but do they address their patients' needs and work with the doctors the keep patient well, or has it become "the cheaper the better" assembly line of dialysis?

When patients advocate for themselves they are often labeled as trouble makers and black listed in centers.  Treatment can actually be denied to a patient.

I think if there was a National Clearing House/Treatment Center for new and continuing kidney patients that each countries' information was included and processed, and access to the resources- kidney related, where referrals could be made, and patients could do research into treatment in their own areas, we would have better outcomes as patients.

Just a few thoughts.

[cattlekid]

I agree completely with your first point.  When I was on dialysis, I would throw things at the TV when I would see advertisements for the Cancer Treatment Centers of America or any of the myriad cancer centers here in the Chicagoland area which are falling all over themselves to have the best and fanciest facility with the most amenities.  Meanwhile, dialysis patients get a center that looks vaguely like a prison (ours had locks on the doors) with just about as many amenities.

I agree that it may have something (or a lot!) to do with the for-profit nature of most dialysis centers.  I had the fortune to experience a non-profit center ONCE when I traveled to South Dakota for vacation.  I came dragging my pillow and blanket as usual, along with my protein bar and bottle of water.  The other folks in the waiting room were incredulous....why did you drag all this stuff?  We have it all provided!  Warm blankets, cups of ice, functional TVs and Wi-Fi.  Plus a much more pleasant physical environment.....and the staff to patient ratio was amazing.  To top it off, the RN assigned to me was a former dialysis patient herself. 

I have to run so I can't finish typing out my personal theory on why the disparity exists between how cancer patients are treated vs. dialysis patients....I'll wait to see what others have to say before I dominate this discussion with my own rantings.

[Charlie B53]

In my experience, not just with Dialysis but with businesses in general, when the business becomes large enough that it becomes a 'Corporation', most of the time the accountants start determining what goes on in order to maximize profit.  Even if this means lowering standards of quality a little, customer satisfaction,, in general most everything, all in the name of increasing profit.

Granted, some of these Corporations are technically Non-profit, and by law cannot show any profit, so they tend to radically increase the salaries of upper management so it at least appears on paper that they are a non-profit organization.

It is the customer that gets short-changed.  In the case of the Dialysis centers, it is the patients, we are often treated like cattle.  Drive us in, get done, send us out.  Very little feeling or even an appearance of caring how we feel.   Just get in and out of the chair so to get the 'next' patient in.

Pure profit.

I've always called it "Corporate Greed".

Many Clinics do not want to teach or support home care, as NxStage users are not adding much to this Corporate Profit.  The Corporation rather have those patients in the 'Chair'.

[KarenInWA]

Many Clinics do not want to teach or support home care, as NxStage users are not adding much to this Corporate Profit.  The Corporation rather have those patients in the 'Chair'.

This is what I do not understand - the clinics seem to charge home patients the same or more than they do in-center patients - and there are little to no brick and mortar costs with home patients. Home patients need to come to a center for a monthly appointment with the team, and that's about it, plus have 24-hour access to a nurse. Where is the idea coming from that in-center patients bring more profit than home patients???

KarenInWA

[Simon Dog]

On an on-going basis, home hemo is likely to be more profitable due to the less use of staff time.  Of course, this is variable - if the clinic happens to have an empty seat but cannot reduce by 1 tech due to staffing, in-center might be cheaper.

The big cost is having a home support RN (which is pricey per patient unless the RN is fully loaded with 12-15 patients under his/her care), and the up-front time for training.

Granted, some of these Corporations are technically Non-profit, and by law cannot show any profit, so they tend to radically increase the salaries of upper management so it at least appears on paper that they are a non-profit organization.

Non-profit/501(c)(3) required that there are no "shareholders" or persons paid a share of the take because of ownership in the organization.    Just look at the Susan Komen foundation - $500Kish salaries at the top; no shareholders; legitimate non-profit status.

Meanwhile, dialysis patients get a center that looks vaguely like a prison (ours had locks on the doors) with just about as many amenities.

Yeah, but you're safe it you drop the soap in a clinic 

[Charlie B53]

Wounded Warriors is a non-profit, and we see what has happened with the two top officers being exposed not only for outrageous salaries and benefits, but their lavish spending of donated money.

This happens with a lot of charitable organizations.  It isn't always made public so we have no idea.   There are websites of organizations that do try to keep track of donations to charities and list those charities that have a proven record of much higher percentage of donations actually being spent helping those that need their help.


We now return you to your regularly scheduled subject;   Treatment Centers    Sorry for getting sidetracked, again.

[Michael Murphy]

I go to a remarkable center it is jointly owned by a hospital and one of the major dialysis companies. The staffing is set by the hospital nurses contract  1 RN manager, 1 RN Charge Nurse, 2 or 3 floor RNs, 4 or 5 techs, 18  Dialysis stations.  The quality of the care here is outstanding.  People drive by multiple centers closer to their home to use this place.  The staff really care about the patients,  and at these staffing levels every one has the time to help each patient.  I was lucky enough to be sent to this center and I am sure I have been spoiled for any future centers.

[Simon Dog]

The salaries of the top officials in all 501(c)(3)'s is reported to the IRS on form 990, which you can view for free on guidestar.org.

A few years ago, the regulations were changed so that the form 990 must include payments to parties benefically owned or controlled by principals of the 501(c)(3).   The PanMa Challange (a MA charity that raises funds for cancer research with a huge bike ride) was found to pay $900k to a firm owned by the founder of the org which, in turn, paid founder $500k; hired his wife; and paid a huge bonus based on the take.    This has, surprisingly, not hurt the donation rate and since it was a salary, not lavish spending, there has been no real backlash.

I have a 501(c)(3) that takes in about $100k/year, but all of our officers are volunteers., with the money being spent on outside servicesa and lawyers.

[Fabkiwi06]

I'm at a DCI clinic, conveniently located in the DCI headquarters. I'm really happy with them for the most part. My nephrologist was the same that saw me in hospital. The team seems to work together and with me. They're pretty open about exploring different holistic options within reason.

[Charlie B53]

I go to a DCI Clinic in Columbia, Missouri.  My Neph is my same Neph at the VA Hospital that I have been seeing.  I've been a regular at the VA Renal Clinic for many years watching my kidneys decline until it got low enough we started talking about getting my cath put in and getting started.  Sent me to DCI for Training and was half surprised at my first Monthly Clinic when MY Neph showed up over there.

[MuddyGurl]

THERE IS NO SECRET BETTER TREATMENT AT CANCER CENTERS..the opposite in fact!
https://www.cancercompass.com/message-board/message/all,38947,0.htm

this has a long list of people' experiences…I was also told by  excited friends trying to help that I should call them. I did..and  I did not have the right insurance…as almost EVERY person complains of.

Plus the ads do make it look like very personal, customized care…as if one person will get some magic herbal shake, while another gets a magic oil back rub…I am not buying it.

One person on the above link complains  that Medicare and other insurance may not even get you a return phone call.  Desperate worried people are poorly treated because CCOA is  profit business, and doesn't waste time on  people whpo won't be patients, so might as well  eliminate them from calling again. And they are NOT listed as top 50 or 100 hospitals for cancer.

CCOA say they offer both modern medicine treatments and natural and complementary techniques..all of it fancy footwork in the ads.

"Complementary medicine" as in taking Vit D, or turmeric, or even a healthy  real foods diet  is barely tolerated by most doctors. My own VA surgeons laughed at me for saying i wanted to keep going with a specific vegetarian diet until I  healed from a  major car accident (I couldn't raise my arms  let alone care for myself at home  if I needed the 'big cut' surgery). I just wanted to take a breath before the nephrectomy surgery…I was accused to trying to "cure myself with herbs"  YES…eating broccoli was pretty outrageous to them.


Since  dialysis clinics are also owned privately ..maybe 3 or 6 owned by one Neph ..there is no state to state  similarity like CCOA.

to me the WORST crime is there is NO protection for patients wwho complain…reports are kicked all the way back to the clinic, possibly to the persons/nurses giving the poor care…NO OVERSIGHT means no real protection or whistle blowing for the sufferer.

[kristina]

to me the WORST crime is there is NO protection for patients wwho complain…reports are kicked all the way back to the clinic, possibly to the persons/nurses giving the poor care…NO OVERSIGHT means no real protection or whistle blowing for the sufferer.

... Thanks for saying it, Muddygurl   ... I could not agree more ...

[kickingandscreaming]

Cancer Treatment Centers of America represents the worst of corporate-driven medicine.  Here's a Reuters article: http://www.reuters.com/article/us-usa-cancer-ctca-idUSBRE9250L820130306

And it has ties to the very right wing Freedom Works which is enough to send ME running.  May not be an issue for some of you.

[cattlekid]

I always thought that CTCA was a scam of some sort.  However, I do know from my mom's experience that when she was going through breast cancer treatment, Komen Foundation and other groups were lined up to throw assistance at her.  She was offered all sorts of free massage therapy, yoga therapy, house cleaning, etc. etc.  She was shocked when I told her that those of us on dialysis weren't fortunate enough to have charitable groups lined up to provide assistance...unless you count the money laundering that goes on from NKF and the like.

[kitkatz]

I have been mulling over starting a Kidney Information Clearing House.  It would be where every page, group or corporation that deals with dialysis or ESRD would be listed by state so patients can find a support system out here near them.

[Charlie B53]

An information clearing house is a great idea as Google often fails if the seeker does not use the correct words to find the information they are after.

What help or assistance could we give to help you get started?

[cassandra]

When you go to Global dialysis which lists thousands of D clinics you would have a start maybe?

Love and luck, Cas

[kitkatz]

I do not think the dialysis clinics need help.  It is pages like IHD.com and renal network as well as support groups people have started.  Facebook pages, other web pages, etc.  So when someone comes to the clearing house support services are listed by their states so they can call or write or email for support.  I know NKF and AKF are probably doing it, but all I ever get is we want money letters.  No contact in 17 years of being on dialysis. 

[apetty]

lol! i wanted to laugh at my totally generic POC (after I had been almost a month out of the hospital), if I wasn't choking on my own anger.  When I mentioned the absurdity I was told that all the POC's were documenting the minimum requirement.