Dialysis center is pushing me out the door

[needlephobic]

They are really trying to push me out the door. Tuesday was running fever and they kept turning the AC up hello ever heard of taking my temp and I am supposed to trust them with my life. Then today I received a letter from them saying they a removing me from the American Kidney fund because financially it is not feasible for us to carry this account any longer. WTF give me a break took the support group away from me took my therapy for my fear of needles and trust issues away from me so what is next with this private company of money hungry Doctors that don't care about the patients just there money.       

[Meinuk]

I am sorry that this is happening Needle.  Have you been working with a social worker about the AKF?  If you are being put in a position where you may not be able to pay for dialysis, you need to stay on top of them.  If you aren't getting anywhere with your Social Worker, why don't you call your Network, speak with the Patient Care Coordinator and tell them that you are afraid that your unit is trying to get rid of you.  (or, you want to transfer to another unit if at all possible).

You can find your network's 1-800 patient hot line here: http://www.esrdncc.org/    or google your state and the words ESRD Network

And just as a refresher, you have Rights and Responsibilities in your unit.  If your rights are not being met/upheald, you should talk to the Network.


http://www.medicare.gov/Dialysis/Static/PatientRights.asp?dest=NAV|Home|Resources|PatientRights#TabTop

Patients' Rights and Responsibilities

As a person with kidney failure, you have certain rights and responsibilities. When you go to a treatment center, ask for a copy of your rights and responsibilities. This will help you know what to expect from your health care team and what they can expect from you. Your center may have lists like the following.

Your Rights

    * I have the right to be told about my rights and responsibilities.
    * I have the right to be treated with respect.
    * I have the right to privacy. My medical records can’t be shared with anyone, unless I say so.
    * I have the right to meet with my whole health care team to plan my treatment.
    * I have the right to see the dietitian for help with food planning and the social worker for counseling.
    * I have the right to be told about my health in a way that I understand.
    * I have the right to be told about and to choose my treatment options.
    * I have the right to be told about any tests ordered for me and the test results.
    * I have the right to be told about the services offered at the center.
    * I have the right to be told about the process of dialysis and dialyzer re-use.
    * I have the right to be told about any expenses that I have to pay for if they are not covered by insurance or Medicare.
    * I have the right to be told about any financial help available to me.
    * I have the right to accept or refuse any treatment or medicine my doctor orders for me.
    * I have the right to be told about the rules at the treatment center (for example, rules for visitors, eating, personal conduct, etc.)
    * I have the right to choose if I want to be part of any research studies.

Your Responsibilities

    * I need to treat other patients and staff as I would like to be treated, with respect.
    * I need to pay my bills on time. If this is hard for me, I can ask about a payment plan.
    * I need to tell my health care team if I refuse any treatment or medicine that my doctor has ordered for me.
    * I need to tell my health care team if I don’t understand my medical condition or treatment plan.
    * I need to be on time for my treatments or when I see my doctor.
    * I need to tell the staff at the center if I know that I’m going to be late or miss a treatment or visit with my doctor.
    * I need to tell my health care team if I have medical problems, am going to the dentist, am being treated by another doctor, or have recently been to the hospital.
    * I need to follow the rules of the center.
    * I need to get to and from the center for my treatments. I can talk with my social worker if I need help doing this. Medicare does not pay for transportation.

[needlephobic]

I am sorry that this is happening Needle.  Have you been working with a social worker about the AKF?  If you are being put in a position where you may not be able to pay for dialysis, you need to stay on top of them.  If you aren't getting anywhere with your Social Worker, why don't you call your Network, speak with the Patient Care Coordinator and tell them that you are afraid that your unit is trying to get rid of you.  (or, you want to transfer to another unit if at all possible).

You can find your network's 1-800 patient hot line here: http://www.esrdncc.org/    or google your state and the words ESRD Network

And just as a refresher, you have Rights and Responsibilities in your unit.  If your rights are not being met/upheald, you should talk to the Network.


http://www.medicare.gov/Dialysis/Static/PatientRights.asp?dest=NAV|Home|Resources|PatientRights#TabTop

Patients' Rights and Responsibilities

As a person with kidney failure, you have certain rights and responsibilities. When you go to a treatment center, ask for a copy of your rights and responsibilities. This will help you know what to expect from your health care team and what they can expect from you. Your center may have lists like the following.

Your Rights

    * I have the right to be told about my rights and responsibilities.
    * I have the right to be treated with respect.
    * I have the right to privacy. My medical records can’t be shared with anyone, unless I say so.
    * I have the right to meet with my whole health care team to plan my treatment.
    * I have the right to see the dietitian for help with food planning and the social worker for counseling.
    * I have the right to be told about my health in a way that I understand.
    * I have the right to be told about and to choose my treatment options.
    * I have the right to be told about any tests ordered for me and the test results.
    * I have the right to be told about the services offered at the center.
    * I have the right to be told about the process of dialysis and dialyzer re-use.
    * I have the right to be told about any expenses that I have to pay for if they are not covered by insurance or Medicare.
    * I have the right to be told about any financial help available to me.
    * I have the right to accept or refuse any treatment or medicine my doctor orders for me.
    * I have the right to be told about the rules at the treatment center (for example, rules for visitors, eating, personal conduct, etc.)
    * I have the right to choose if I want to be part of any research studies.

Your Responsibilities

    * I need to treat other patients and staff as I would like to be treated, with respect.
    * I need to pay my bills on time. If this is hard for me, I can ask about a payment plan.
    * I need to tell my health care team if I refuse any treatment or medicine that my doctor has ordered for me.
    * I need to tell my health care team if I don’t understand my medical condition or treatment plan.
    * I need to be on time for my treatments or when I see my doctor.
    * I need to tell the staff at the center if I know that I’m going to be late or miss a treatment or visit with my doctor.
    * I need to tell my health care team if I have medical problems, am going to the dentist, am being treated by another doctor, or have recently been to the hospital.
    * I need to follow the rules of the center.
    * I need to get to and from the center for my treatments. I can talk with my social worker if I need help doing this. Medicare does not pay for transportation.

Meet with my whole health care team yeah right asked about this with social worker was informed the Dr would not show up he is the main reason I wanted this meeting.
Social worker counseling won't work  she is insurance MGR now no more counseling have to find out side help which I am finding it hard to do. This place is a joke they don't explain anything to me just stupid looks. I am really thinking of contacting network 13 and see what they say my prob is I have no way of getting to another center no car and they are pushing me out the door. Over a week ago I over slept alarm clock didn't go off I call them to see if I could get in they said yes went in was hooked up and charge nurse came over and wanted to change my time when I come in to the center about 30 mins differences didn't make no since to me just because I over slept. Seams they are just picking on me don't know if it is because I have not allowed them to needle me do to my phobia or they just want to get rid of me. My Dr is no help just a stupid look like he cares but don't has not told me anything about my kidneys and what they are doing don't get any explaintion about my numbers nothing I am still new to all this and learn more here than from my Doc and the center.

[Rerun]

What company are you with?  Is there another dialysis center close or far?

How about switching doctors?

[noahvale]

***

[needlephobic]

What company are you with?  Is there another dialysis center close or far?

How about switching doctors?

Its call sooner dialysis and own by the Doctors. There is a center across town divas center prob misspelled  it but not sure about it. The other centers are up in the city where the other Nephs are but no car. As my former social worker told me she retired or as she said quit because they (The Docs ) don't care about the mental or phyical  condition of the patients they just want there money. and it is scarey cause everytime I go in my life is in there hands and they hate it when I watch them like a hawk and ask question. To them I should set there mouth shut and take my med.

[Meinuk]

Needle, I've had way too much coffee this morning and I just wrote a lot in this post, I wrote it totally with you in mind, but I also made a lot of assumptions that are just that, assumptions.  My overall thought is, that we want you feeling better and getting the best possible dialysis.  Take any or none of what I just wrote, but please, keep us in the loop as to how you are doing.  We worry.

xx

Anna

You have a right to care, and to resources.  Sadly, in this economy, you need to address the financial first.  If you are unable to pay for dialysis, this need to be fixed.  If you qualify for state aid in addition to medicare, you'll need to get that in place ASAP.  If you qualify for Federal "Extra Help" (usually includes a State Aid Coordination of Benefits) that too needs to be put in place. If your Social Worker is not helping you with these resources (and others), you need to cal the network.

Sharing your fears can help with the stress, but therapy could be a better option.  I am assuming that you have Medicare as your primary insurance.  Do you have a doctor that is not working for the unit?  Have you been to a "Wellness" visit with a General Practitioner? If you have to go outside of the unit for medical care (phobia) then, you do what you have to do. Noone should be using a dialysis clinic as one stop shopping for medical care.  Too often we (and I am guilty of this too) are simply sick and tired of seeing doctors, and we can neglect our overall health.  Medicare has put into place a whole list of preventative services with of ZERO co-pay, an annual wellness visit is one of them. Your life is more than just your kidneys.

As far as the quality of care that you get at your unit.  If you have spoken to the unit and you feel that your needs are not being met, and if you feel that your being late once is being retaliated against, then you need to call the network and talk to the Patient Services Coordinator and try to find a solution to the problems that you are having.

If you are having issues with your Nephrologist, you need to speak with the Medical Director.  If your Nephrologist is the medical director, then you need to speak with the Network.

The most important thing in all of this, when speaking with them, you need to try and keep your cool.  (Which isn't always easy  - I know... read my dialysis posts, I am a hot head).  If you feel like you may not be able to keep your cool when speaking with them, go home, and write about your complains.  Then have a friend read it, and then you can mail a registered letter to the Unit's Medical Director, and cc the Network.  Always represent that you are simply trying to work with them to receive quality care, and stress that you are aware of your rights and responsibilities, and then let them know where they are not meeting your Rights, yet you are upholding all of your responsibilities. (being late ONCE is not an issue)

I am sorry that this has been such a struggle for you, it is terrible to have this on top of dealing with a chronic disease. All I can say is that we are here for you on IHD, and in my experience, it is time for you to try and make the system work for you.

NKUDIC also has a page of links "Financial Help for Treatment":
http://kidney.niddk.nih.gov/kudiseases/pubs/financialhelp/

Home Dialysis Central (a GREAT resource for those on Dialysis AND in Center) has a FAQ about Medicare:
http://www.homedialysis.org/resources/medicarefaq/

Davita (I know, I am using Davita as a resource! who knew?!?) Has a page on how dialysis is paid for:
http://www.davita.com/dialysis/lifestyle/how-dialysis-is-paid-for/a/787

edited because my spelling is TERRIBLE!

[Rerun]

What company are you with?  Is there another dialysis center close or far?

How about switching doctors?

Its call sooner dialysis and own by the Doctors. There is a center across town divas center prob misspelled  it but not sure about it. The other centers are up in the city where the other Nephs are but no car. As my former social worker told me she retired or as she said quit because they (The Docs ) don't care about the mental or phyical  condition of the patients they just want there money. and it is scarey cause everytime I go in my life is in there hands and they hate it when I watch them like a hawk and ask question. To them I should set there mouth shut and take my med.

Get to DaVita!  They are better than what you have! 

[Bill Peckham]

What company are you with?  Is there another dialysis center close or far?

How about switching doctors?

Its call sooner dialysis and own by the Doctors. There is a center across town divas center prob misspelled  it but not sure about it. The other centers are up in the city where the other Nephs are but no car. As my former social worker told me she retired or as she said quit because they (The Docs ) don't care about the mental or phyical  condition of the patients they just want there money. and it is scarey cause everytime I go in my life is in there hands and they hate it when I watch them like a hawk and ask question. To them I should set there mouth shut and take my med.

Looks like the other units are FMC
http://projects.propublica.org/dialysis/facilities/compare?q=73505&w=10
scanning the DFRs it looks like it would be worth the fight to improve the situation at Sooner.


Here is your unit's 2010 DFR http://propublica.s3.amazonaws.com/assets/dialysis/facility-reports/OK/2010/OK_372574_2010.pdf

[MooseMom]

It is massively unfair that you have to fight with the people to whom you are forced to entrust your life.  Harness your anger and work to improve your situation.  Like other posters have shown, you have tools with which to work.  Use them.  While fighting consumes the energy that you should be saving to get better, you are in the position to help other patients at your center who might very well  have the same issues that you have but are unbeknownst to you.

I'm really interested to hear about what you do next.  Please let us know what you find out from the various organizations/network you contact.

[needlephobic]

What company are you with?  Is there another dialysis center close or far?

How about switching doctors?

Its call sooner dialysis and own by the Doctors. There is a center across town divas center prob misspelled  it but not sure about it. The other centers are up in the city where the other Nephs are but no car. As my former social worker told me she retired or as she said quit because they (The Docs ) don't care about the mental or phyical  condition of the patients they just want there money. and it is scarey cause everytime I go in my life is in there hands and they hate it when I watch them like a hawk and ask question. To them I should set there mouth shut and take my med.

Looks like the other units are FMC
http://projects.propublica.org/dialysis/facilities/compare?q=73505&w=10
scanning the DFRs it looks like it would be worth the fight to improve the situation at Sooner.


Here is your unit's 2010 DFR http://propublica.s3.amazonaws.com/assets/dialysis/facility-reports/OK/2010/OK_372574_2010.pdf

My bad I am at sooner dialysis in norman use to be FMC but now privately owned.

[MooseMom]

As in Norman, Oklahoma?  Are you telling me that there is a dialysis clinic in Norman, OK called Sooner?  Oh, that raises all sorts of red flags in my book.

[needlephobic]

As in Norman, Oklahoma?  Are you telling me that there is a dialysis clinic in Norman, OK called Sooner?  Oh, that raises all sorts of red flags in my book.

Yes it is sooner dialysis in sooner country thanks for the laugh MooseMom

[greg10]

My bad I am at sooner dialysis in norman use to be FMC but now privately owned.

Looks like Davita Norman on W. Linsey may be better, just on a cursory glance of the statistics, but you can't really know until you try.
http://projects.propublica.org/dialysis/facilities/compare?q=73019&w=20

BTW, you unit, Sooner Dialysis, has a first year mortality of 43%, one of the highest I have yet seen.

[needlephobic]

Thanks everybody for the info I am going to contact ESRD Network 13 Patient Rep have card in hand and I met this lady at the Network 13 state meeting told her some of the probs and she told me to stay in contact  with her. She lives up in the city which is good she can be right down to talk to me. I really don't want to start any trouble but enough is enough maybe she will find away for me to get to another center who knows. 

[MooseMom]

That's good news!  Promise me that you will keep us informed because this is really important.  By calling attention to the probs in your clinic, you may well be saving the lives of other patients, so good for you!

[needlephobic]

will do not only is she a Rep but a D Patient too up in the city best of both worlds woo hoo

[our last breath]

GOOD LUCK TO YOU.WE UNDERSTAND My husband was treated like a number... Keep up your fight.  Make them listen

[JasonEb]

Wow...just wow...

Haven't posted here in a while, but last time I did (about six months ago, not too long after Sooner Dialysis went independent of FMC), I posted about some issues I was having with this SAME clinic.  I, however, have been at this clinic since BEFORE they official opened (January 2003), and have now been on dialysis for over a decade.

Around the time Needlephobic's posted here, the old unit manager "quit" (I suspected he was pushed out), and the position of facility manager and Director of Nursing was split.  The Facility Manager position was given to a tech and DON was given to an outsider.  The tech that was given the position (Leslie Whiles, for anyone wondering) had a reputation for being combative and argumentative with co-workers.

Now, keep in mind I have been doing dialysis for over 10 years now and did a few things with my treatment that differed somewhat with how they wanted me to do things.  I was also fairly firm in my decisions.  Once I made up my mind, unless they could come up with a logical, rational decision to change it, it wouldn't change.  For instance, I only go twice a week instead of the prescribed 3 times since whenever I go 3 times a week, I never felt good, but when I go twice, I at least have a couple good days a week (dialysis really wipes me out, no surprise to most of you).  My nephrologist understands this, but keeps the official recommendation at 3x a week to cover his own rear end, which I respect.

However, Sooner Dialysis last year went through some hardships.  They lost their BlueCross/Blue Shield account, had some pretty brutal state audits, and a couple other things (this is why I think the previous medical director ahem..."quit").  Since the new administration started, they have begun tightening the ship up, which admittedly, the unit needed.  However, in recent months, they have begun, in my opinion, targeting patients like Needlephobic (and now, myself...more on that shortly) who are not complacent (and yes, I meant complacent, not compliant).

In my case, I had a small incident with a nurse that I have had a problem with for a couple years now (she had lied several times to me about various things).  After the incident (which included me confronting her about a recent lie that a certain tech that stuck me really well had requested not to stick me for awhile) , I asked for a meeting with her and the unit administrator to (hopefully) hash out our differences and be able to co-exist peacefully.  The next treatment, the new DON (and the social worker) came out during my treatment and proceeded to chat, I thought she was just trying to get to know me.  She said she was investigating "everything", which I took to mean everything that had transpired between me and the nurse.  She asked (again, in a conversational "get to know you" way) why I did things a certain way and so forth.

The day came for the meeting, and not only did the nurse I was having the dispute with not show up, the DON and facility manager used the opportunity to force me to sign a behavioral contract to force me to comply with how they wanted to run my treatment.  It used a few anecdotes from a couple patients (all of which I did not get to have their names or anything so I could talk to them) which taken out of context makes it seem like I'm this violent, abusive patients (which, trust me, I am not.  Firm? Most certainly, but also friendly, warm, and on good terms with just about everyone, patient and employee alike.  Have I had my disagreements here and there or personality conflict with anyone?  Sure, I've been doing this for over 10 years...I'm bound to come across someone I don't get along with in that time).  Anyway, both the social worker AND my nephrologist (listening by phone) had had no knowledge that this was the unit's intention for this meeting...it was never to settle the conflict between the nurse and I.  I was basically told to sign this contract or go elsewhere to dialyze.  I was so blindsided and so utterly stupefied that I signed the thing.

The next day my nephrologist and I talked, and he said the unit is basically "loading the gun" and trying to get rid of me (he doesn't work for or at the unit).  For the past month, I have followed the contract to the letter, though I have often made my feelings about it known to them and that I intend to fight it (all in a calm, rational way).  Sure enough, my nephrologist just the other day told me that they're "firing the gun" and intend to give me a 30-day involuntary discharge this next Wednesday (he said he was told by them it was because I had left ONE day with a standing blood pressure lower than 90 [it was 75/22], which was incorrect because the line had been kinked and I was moving my arm trying to free it while the bp was taking.  Heck, if it had actually been 75/22, I would have been passed out, not chatting and feeling fine).  I've had some meetings with the social worker since then, and they (the unit administrators) refuse to even tell her what will be involved in this meeting on Wednesday (other than it is for a "one month assessment of the contract")

Anyway, to make a long post even longer...I was amazed when I hopped on here for the first time in months and saw Needlephobic's posts, as I didn't even know he was at my unit!  I think he is even on the same day and shift as I am!  It definitely lends credence to my theory that they are trying to push out the patients who are not complacent and who may be hurting their "numbers" by not being so.

I have a very large case I am building against the unit (yes, I could go somewhere else, but dammit!  I've been there long before any of them came along, and I feel a need to fight this injustice they are trying to perpetrate) which includes, well...I'd better not say here since you never know who might be reading.  I will try to contact Needlephobic (if you're reading this, I'd love to get in touch with you!), and hopefully give updates.

Small Disclaimer:  There is a chance that they will actually not try to give me a 30-day notice since I have been making a great deal of noise (within the system, of course), but I still plan to go after them for this bogus "contract" I was forced to sign.

Jason E.