I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: G-Ma on January 06, 2009, 03:05:51 PM
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Yesterday...Monday..I got to clinic at 10:30 as usual. Called in at 10:50. Great. Tech called another tech to stick me as she infiltrates me. Good. Good tech came, stuck me, taped, walked away. 11:10 tech finally came to hook me up, arterial was clotted. I had told her. Got it unclotted, then veinous did not work, she flipped the needle and felt like sucked my vein in, stopped. Waited for other tech. 11:40 he finally got away to restick me. I was NOT happy but went with the flow as he is good. Finally got connected, no lung check etc at beginning and I had been in pain all over when I arrived. Head nurse came by, said Hi how are you...so sweet ::) I said not good and she said ok and walked away smiling. Social Worker came by also asked how my day was going. I told her...she went and told Director who said she would come by..NOT. Between 12 and 1:30 no one came to check me or my machine. At about 2:30 another patient tried to die so nurses were finally busy for real. At 3:20 tech asked a nurse to pull my needles as she was busy, nurse didn't want to so tech who stuck me came and pulled needles so I could hold, said he had to leave or would be in trouble for staying, told me to call out if no one came to tape me :rofl; at 4:40 I called the nurse who had been standing next to me the whole time and I asked for tape. She finally came and taped me, walked away, I finished putting away my blankets, went and weighed myself and waited for her to take my BP. I was standing the whole time with a nurse sitting at the desk facing me. At 4:55 I just picked up my stuff and announced I'm leaving now. A tech was sitting in a patient chair, a nurse was taking off the last patient, another tech was cleaning the next machine. The nurse at the desk was the one who had taped me and walked away..well, she jumped up, asked did "she" take your BP? I looked at her and said "no, you didn't" and I kept walking. Director had never come to talk to me. The week before Christmas I heard another patient demand to move to another center due to poor care and the charge nurse came over and said "consider it done", never tried to talk to the patient. Until this time I've not had care this poor. But this kind of care could be fatal to me, so not sure where to go with this since the Director doesn't seem interested either. Now I'm starting to wonder if this center is working toward closing? They closed their Nocturnal unit the end of October 2008. Company is RAI. Anyone know anything?
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there should be a poster somewhere in the center listing complaint procedures. make your complaint in writing and watch them scurry......there is no way any of us should have to put up with this type of treatment.
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Stories like this infuriate me because this is the type of clinic where people are likely to die and no one will be admonished for it.
And to have to waste six hours of your day for a three hour treatment because no one seems to care is horrifying.
I know its not easy while suffering ESRD, but please try and find a new Dialysis center (non-profit if possible, they seem to have the best care) and get your care managed. None of the individuals have the right attitude for caring for patients.
What you've described is what you'd expect from a cashier at a gas station with a bad attitude.
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In the lobby of the clinic, it HAS to be posted. It is the law. Look for the paper that says something to the effect of "how to post a compalint" or something similar. In Texas, you can call The State Health Department. Should be the same in NC. If you can't find it, ask to review your consents. It's in there as well. You can also call ESRD Network. Look online, the website will give you the Network # that your in, ( I am in 14). They will also be able to help you. After that, there is CMS, Center for Medicare Services, the biggie. I would have said, start with the Director, but she sounds like an idiot. It's a shame, there are quite a few idiots in healthcare. Let me know if you need more info...
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You have to put it into writing to the director of the place. They have by law a certain number of days to get back to you either verbally or in writing.
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You have to put it into writing to the director of the place. They have by law a certain number of days to get back to you either verbally or in writing.
Good point KitKatz, I was so mad I left that out. The state surveyer will ask for a written record of complaints. If there are no compliants logged, they will have a full blown survey. If you get the state involved for a complaint, they come in quickly, and look at everything, and talk to patients about the quality of care.
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Thanks all. Guess I will have to do a letter.
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Simply outrageous treatment G-Ma. You need to find out who's in charge of the unit (but not in there). Put it in writing detail by detail. Cc it to the director but address it to her boss. Cc it to the social worker as well. Her job in part is to advocate for patients. I've never heard of not being hooked up immediately once you've got the needles in your arm. I also completely agree with Stacy about trying to find somewhere else to go. Where's nursewratchet on this for advice. We all know she'll be pissed. Since you did home hemo for a while, would they ever let you hook yourself up and turn up the pump etc.? I'm fuming on your behalf right now. I'd be thinking news reporter right about now but I tend to get a little tetchy when riled.
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Simply outrageous treatment G-Ma. You need to find out who's in charge of the unit (but not in there). Put it in writing detail by detail. Cc it to the director but address it to her boss. Cc it to the social worker as well. Her job in part is to advocate for patients. I've never heard of not being hooked up immediately once you've got the needles in your arm. I also completely agree with Stacy about trying to find somewhere else to go. Where's nursewratchet on this for advice. We all know she'll be pissed. Since you did home hemo for a while, would they ever let you hook yourself up and turn up the pump etc.? I'm fuming on your behalf right now. I'd be thinking news reporter right about now but I tend to get a little tetchy when riled.
Im so pissed, I'm laughing about it. I can't believe this!!! :rant; :rant; :rant;
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yes Monrein, that's why I waited til today to note this on IHD...I was HOT and major headache. Yeah, I was floored about having to wait and no they won't let me do anything myself. I have asked, I tell them more on what to do than they want to know. I would love to be in a center like you are. Have a great day.
Ann
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Gee that is so poor. I am ever so thankful for the awesome crew that I have when I read stuff like this. If they're busy they are more than happy for me to do the things I can do.. like my resting and standing BP's, weight, writing those down etc. I too have always been hooked up when I've been needled. If the machine is not ready (testing etc) then they might needle just a minute or two before it becomes ready. What hopeless (lazy) staff to not even tape you?? what the??? I agree with the others to write it down, document and send multiple copies...
good luck!!
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If you want to piss them off....... leave without a standing BP or a weight. They will have to make something up to get out of the computer.
:rofl;
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I'm so glad we have this --> :Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik;
:grouphug;
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If you want to piss them off....... leave without a standing BP or a weight. They will have to make something up to get out of the computer.
:rofl;
I really WANT to be shocked that someone would "make something up", but... I am still shocked over the "no lung sounds, or heart sounds" by some people. :rant;
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G-Ma, how terrible! I hope you are able to get something done about it. It is sad how lightly they take their job when people are relying to keep them alive.
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:Kit n Stik; Use my stick judiciously and well on someone's head in your letter!
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As Kitkatz said, put it all in writing and copy everyone.
Here's the web site for the National Forum of ESRD Networks:
http://www.esrdnetworks.org/esrd-networks-1/esrd-networks
Network 6
(Georgia, North Carolina, South Carolina)
http://www.esrdnetwork6.org/
Southeastern Kidney Council, Inc.
1000 St. Albans Drive, Suite 270
Raleigh, NC 27609
Phone: 919/855-0882
Fax: 919/855-0753
email:jkrisher@nw6.esrd.net
8)
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Thanks Zach. I have work to do.
Ann
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OK, my letter is detail by detail and I have emailed it to places Zach provided and also thinking about letting the State Health Dept and Medicare know about this too.
Thanks for your support.
Ann
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OK, my letter is detail by detail and I have emailed it to places Zach provided and also thinking about letting the State Health Dept and Medicare know about this too.
Thanks for your support.
Ann
I would send it to all of them. Send the same letter, copy to the facility director, her boss, ESRD, AND the State. Things will change. If the state finds fault within the facility, jobs can be lost, and the will send a "monitor" until it's improved.
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:thumbup;
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I posted this article by Roberta Mikles, RN, BA elsewhere on IHD, but it's appropriate here:
Viewpoint: The Many Faces of Quality Care and a Need for Accountability
http://www.renalbusiness.com/articles/the-need-for-accountability-in-dialysis.html#
Dialysis Patients' Bill of Rights and Responsibilities
http://www.kidney.org/atoz/pdf/DialysisBillRights.pdf
Don't accept mediocre -- mediocre can kill.
The way to bring about improvement of care is vigilance by those on hemodialysis.
Always write it down and when corresponding, cc many.
8)
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When I read "mediocre" I saw "Medicare" - :rofl;
I hope you get some support G-Ma, your story makes me angry and sick! :puke;
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When I read "mediocre" I saw "Medicare" - :rofl;
:-*
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Well, I have started rattling some cages. Social Worker was in when I got to D this morning. I handed everyone a copy of the letter. She discussed it with Saul and me and 10 min after I was hooked up the Director came..she knew I was not believing everything she was trying to say..gave me excuses about issues with having to write up some techs and their friends being upset. I told her several times this should NEVER be a problem of any patient..she needs to fix this..she kept saying I wish you had talked to me before you sent this and held up her letter. I said I was here Monday and you did not come to talk to me, well there were excuses about that too. We shall see how this turns out. Too many people use too many excuses. I'll keep you posted.
Ann
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Good for you! Give 'em hell! :boxing; :boxing; :boxing;
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yeah well she HAS to respond formally now and she's pissed at that well her own fault for NOT seeing you Monday when she said she would. You're right too many lame excuses and the staff's issues are NOT yours and they should not make excuses to you, their client/patient/customer, about their internal issues which are none of your business or concern. The fact is the ball was dropped multiple times and you're rightly calling them on it. Good for you! You will probably, unfortunately, get a black mark against you now as a "complainer" which is sad - I hope they treat you properly and with respect (as all patients should, incidently)... fingers crossed!!!!
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Way to go girl.
Good for you
:2thumbsup;
. I told her several times this should NEVER be a problem of any patient..she needs to fix this..she kept saying I wish you had talked to me before you sent this and held up her letter. I said I was here Monday and you did not come to talk to me, well there were excuses about that too.
Too many people use too many excuses..
Yeah I agree - too many excuses too many times
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Good for you Ann. And now you let them get all rattled while you just keep a calm dignity about you. The director's job is to deal with her techs and your job is to stand your ground and insist on acceptable care. As for her wishing you'd talked to her first, she had her chance as you'd asked to speak to her and Lord knows you spent a good half a day there so she can keep on wishing. I'm so happy you took the power available to you.
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Give them absolute hell! :Kit n Stik;
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If you don't advocate for better care, who will? I am sure you aren't the only one who has received shabby treatment. Kudos to you for having the courage to speak up!
Hang tough! :boxing;
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A little off the topic of this thread but I found myself in a similar situation just today.
The other day I was due my Aranesp (EPO) shot. No problem. Now a little unusually the nurse got the shot out of the fridge but did not administer it into the machine straight away. She put it down on my table and said she'd do it a little later (no idea why). Now it sat there for a little bit (I have no problem with that incidently.. I mean it wasn't going to overheat for 30 mins or go off or anything). Well it sat there and I just had this thought into my head to look at it... maybe look at the expiry date or something.. I was more curious than worried or concerned. Well I picked it up and imagine my surprise when I discovered the dose was higher than what I am usually given. Given the concern about high Hemoglobin levels being dangerous, and well just because it clearly wasn't the right dose for me, I called the nurse back and queried her.. now I didn't say "hey you've gotten out the wrong meds" because I didn't want to appear like I was accusing her of making a mistake or anything but I just said "hey are you sure this is the right one? I am sure I am A 40 and this is A 50.... did something change?" (I knew it hadn't, but I didn't want to cause a fuss) now OK the nurse went off and got the right dose and stuck it in. I think she was OK about it though she didn't really say much to me.. I guess she was embarassed at being caught out.
Anyway I thought no more about it for the rest of that session or later but the more time went on I started to think about it and I was wondering what might have happened if I had been given the higher dose by accident? Probably nothing but I didn't know. I also thought that clearly that specific dose was for some other patient and had it been used then they may not have had a dose ready for them when they needed it. I really thought while it was fairly minor in the grand scheme of things that I should tell someone in charge. Not to get the nurse into trouble or anything like that but I just thought SOMEONE should know.
Well I came in today and quietly told the boss nurse I wanted to have a word with her in private when she had a moment. Well that was fine except as luck would have it the nurse in question was putting me on when the boss came up and wanted to know what I wanted to talk about. I just said to her it wasn't that important and could I talk to her about it later... of course the nurse in question clearly must have figured out something was up and she got a bit weird with me.. not that I mind so much but I just don't want to put anyone offsite.. I mean everyone makes mistakes and are only human and I don't hold any grudges.. I actually really like all the staff.
Well so anyway at the end of my session I took the boss aside and explained what had happened and my concerns but I stressed I didn't want to make it formal or involve anything serious but I felt someone should know that it happened just because (and let's face it, if it was one in a series of incidents then maybe they need to do something about it). Well the boss was pretty good and said she apprieciated that I wanted to be discreet and that sometimes they got a little lax with double checking stuff like that.
So anyway not quite sure what will happen and I did wrestle with it a bit because I don't want to be seen as one of those troublemakers or anything but it could have been important. As the nurse said having that one higher dose wouldn't have had any major effect... if I had it for a month or two then yes it could cause issues... so I felt better about that but I also felt better that I'd informed someone in charge because it is important I think.
So anyway that's my story!!
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I know how you feel Richard! I often catch one nurse in particular making 'tiny' errors! I caught this one nurse I actually like a lot about to infuse me with iron and I am supposed to get it through the IV drip. She was actually grateful that I said something, and not mad at all. This other nurse though he just is like really bad at his job.. I actually hope he gets axed, I think he's a danger to the patients. Not giving me my heparin and infusing me with Iron all in one day was a bit much..
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Good Lord G-MA, so sorry you had to go through this. But good for you on rattling some cages. This is your health they are dealing with, if they can't handle this job, find a new one.
I rattled some cages about 6 months ago when Rob's Home Hemo nurse at his dialysis center messed up sending his blood tissue for the transplant list. They never sent it in and it was too late for the center to draw the blood and send to the hospital. I called his nurse, she was out on leave, called his nurses boss, she was out dealing with her sickly husband. Nobody was available for him. I complained to the receptionist, who can help us, she had the nerve to say that the nurses are dealing with a lot of personal issues and how dare we demand their help. Well long story short, Rob went right to the hospital to have his blood tissue drawn and submitted. I called the Director and the Director's boss about this lack of responsibility and what the receptionist said to me. Don't ya know that within 2 hours I had lots of people calling us and kissing our ass? His nurse got back to us the next day and apologized, I went off on her too. I don't care, they have a job to do and they better do it right. :boxing;
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Sky: Saul and I both went WHAT...on what the receptionist said.
Karen: Good for you on watching.
Richard: What concerns me in your situation is many times the nurses just look at the past week to do the next meds and if she gave and "noted" the 50 and then would continue the 50 we are talking about problems.
When we got home today we had a message from regional ESRD so I need to call back and discuss Monday.
Hope you all have a good week.
Ann
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This may be a bit off topic but I also notice that certain people who give me my benadryl also tend to be better at administering it. I mean when certain people give it to me I hardly even feel anything, they may as well have given me water, while others really know how to knock ya out! lol
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I posted this article by Roberta Mikles, RN, BA elsewhere on IHD, but it's appropriate here:
Viewpoint: The Many Faces of Quality Care and a Need for Accountability
http://www.renalbusiness.com/articles/the-need-for-accountability-in-dialysis.html#
Dialysis Patients' Bill of Rights and Responsibilities
http://www.kidney.org/atoz/pdf/DialysisBillRights.pdf
Don't accept mediocre -- mediocre can kill.
The way to bring about improvement of care is vigilance by those on hemodialysis.
Always write it down and when corresponding, cc many.
8)
:bump; Bumping this up for those who are new.
Roberta continues to be a steadfast advocate for quality care and you can read about what she's doing here www.qualitysafepatientcare.com - a site dedicated to Roberta's dad Mickey, who said, "Ask your nurses, dialysis technicians and physicians --
'What kind of care would you, or your loved one, want to receive?'
'Is the care you are giving me, what you would want for yourself, or a loved one?'
Roberta is also helping patients who are experiencing some type of bullying, retaliation and reprisal in their units.
and to get more help, as mentioned before, go to your ESRD network - you can find your state on the map here http://www.esrdnetworks.org/
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Hello All:
We have just finished posting the remaining dialysis facility surveys (inspection reports) for California for 2010 to our site=== please visit and if you have questions, contact us. www.qualitysafepatientcare.com
Newly added surveys: http://www.qualitysafepatientcare.com/newly-added-surveys-2010.php
CDC report - related info for CA http://www.qualitysafepatientcare.com/breaking-news.php
Infection Data - surveys for first six months. http://www.qualitysafepatientcare.com/infection-data-jan-aug-2010.php
I am hoping to analyze the last six months worth of surveys. In the first six months, 23 of 25 facilities were cited for deficiencies in infection control. HELLO staff... these are the basic of most basic practices that you are not implementing
Roberta Mikles BA RN
Director, Advocates 4 Quality Safe Patient Care
Dialysis Patient Safety Advocate (uncompensated advocates striving to ensure safe care withOUT reprisal, retaliation or bullying of patients by staff -- yes, this does happen in some units..
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Networks have no power to fine or close. Call the State department of health.
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G-MA--
I thought I had it bad, but you would think my center was heaven compared to yours. Good luck in your reporting to the authorities and anyone else within yelling distance. You're in my thoughts and prayers.
Seamus
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My center is crap too, even their billing department is horrible and their insurance coridinators suck too! I make complaints and they scurry, but after a while it goes back to what it was. Does anyone know what the process is for finding a new clinic and a new doctor?
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hubby was at an RAI clinic the first time. nasty. hemo unit open to the world and anyone could come and go with no precautions. PD clinic in basement with falling ceiling tiles and mold. many times nurse there would half undress hubby with door open and people walking by and no BSI.
one time i remember she went all the way through his PD TX right there with door open, and after she was done, handed me a mask, gloves and hand sanitizer, after she was done! she had nothing on either.
i was a newbie then but i still knew this wasn't kosher. he had an infection 2 days later and was back in hospital. this same nurse quit a month after we started there.
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Ann--
Good Luck and Illegitimum non Carborundum! (Don't let the bastards wear you down)
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Indeed, I have heard from patients that they have contacted the Networks and nothing has been changed in their unit. The Networks have no power as far as I am concerned and further, the money that CMS pays the Networks should be given to patients and we should do away with the Networks.
As I mentioned before, you can file a complaint with CMS against a techniciian who has provided care that has resulted in a negative outcome. Here in California the agency that certifies technicians will take a complaint and investigate, as well as you can contact the Board of Registered Nursing in whatever state you are in.
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I never want to get you mad at me. You're awesome!
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i agree totally find some where else to go i know i live in frankenmuth michigan i am going to start going to the mount morris michigan dialysis center starting tuesday.
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Always put your complaint in writing.
The one that really gets them is when you make the complaint to CMS or the Department of Health you can even do it anonymous.
Sit back and watch them jump.
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I have received a few emails from some of you -- therefore, am posting the following:
(1) If you are having problems with delivery of care, retaliation from staff, or any other problem, we now have an 800 number for you to contact -- 1-800-847-8842 --(throughout the United States)
(2) For those in California, to see if your facility has been inspected recently www.qualitysafepatientcare.com (we hope that all surveys are posted to the site, but on occasion a survey might be missed - Also, you can file a complaint against a nurse or dialysis technician which can be investigated (different divsion/department than that which inspects/surveys facilities) -If a staff has implemented a practice that resulted in harm, etc..if you experience retaliation, etc. For Calif we have posted the specific departments/numbers
Note: If you are experiencing retaliation from staff, for speaking out to ensure you receive safe care, start taking notes --e.g. date, time, name of staff, what happened, did anyone else see or hear what happened... any other details are also good, e.g. which other patients where present, was there other staff present, (I have even documented what staff where wearing on said day).
Roberta Mikles BA RN Dialysis Patient Safety Advocate
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"She (Arlene Mullin) contends that DaVita clinics operate with virtually no accountability or oversight. “I’ve gotten notarized statements from patients so I can advocate for them, and neither ESRD Networks nor DaVita has recognized any of them. [ESRD Networks and the government] have no authority over these clinics. None.” Mullin claims that DaVita’s insider connections to CMS and ESRD Networks allow clinics to get tipped off about what should be surprise inspections. (She says this also happens at non-DaVita clinics.) The patient advocates I spoke with uniformly believe that ESRD Networks and CMS respond to grievances by stonewalling, burying them in bureaucracy, or ignoring them altogether. “Of all the patients I’ve helped to file complaints, in 100 percent of the cases, ESRD Networks has sided with the dialysis companies,” Mullin says. “Medicare has allowed this industry to oversee itself.”"
http://www.5280.com/magazine/2012/09/strangest-show-earth (http://www.5280.com/magazine/2012/09/strangest-show-earth)
If you find the above to be true about CMS and the ESRD networks, don't give up! Besides the 800 number Roberta mentioned in the previous post, Arlene Mullin and Dialysis Advocates now have a website to visit for more info on getting help. Most of the time solutions to problems don't involve legal remedies, Dialysis Advocates have enough contacts in the government and dialysis industry to get problems solved - the threat of legal action is often enough: http://dialysisadvocates.com/ (http://dialysisadvocates.com/)
Sept. 24th 2012: Dialysis Advocates has just updated it's website with a lot more info!
(Dialysis Advocates is also looking to hear from staff)
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Something crazy happened to me just the other day. I was getting my Venofer, which I've been on for a long time, never had a problem with it before. Well, this time the RN must have just been lazy and he pushed it in fast; which we all should know is a big NO-NO! As it can cause "Red Man's Syndrome" in some patients. Me being one of them. -.- (I also get RMS with Vanco and Genta.) Anyway, so I started feeling very flush and itchy and my face was red as a damn beet! The Nurse Practitioner was there that day and was all, "Lexi, what's wrong? You don't look so good." So I told her I felt like I was having an allergic reaction to something. She said right away it looked like someone pushed the Venofer too fast.
Well, the RN who pushed it was standing right here and he goes, "No, I pushed it slow like usual." In unison (I kid you not) one of the techs and myself go, "No. You pushed it fast. I watched you!" :rofl; It was kind of comical, really. But the RN still insisted he pushed it slow and tried to say I was not feeling good because they were taking too much fluid. Whatever. ::) Surprise, surprise he hadn't even charted anything. So anyway, they gave me some Tylenol and Benadryl to help with the reaction and all was well.
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Something crazy happened to me just the other day. I was getting my Venofer, which I've been on for a long time, never had a problem with it before. Well, this time the RN must have just been lazy and he pushed it in fast; which we all should know is a big NO-NO! As it can cause "Red Man's Syndrome" in some patients. Me being one of them. -.- (I also get RMS with Vanco and Genta.) Anyway, so I started feeling very flush and itchy and my face was red as a damn beet! The Nurse Practitioner was there that day and was all, "Lexi, what's wrong? You don't look so good." So I told her I felt like I was having an allergic reaction to something. She said right away it looked like someone pushed the Venofer too fast.
Well, the RN who pushed it was standing right here and he goes, "No, I pushed it slow like usual." In unison (I kid you not) one of the techs and myself go, "No. You pushed it fast. I watched you!" :rofl; It was kind of comical, really. But the RN still insisted he pushed it slow and tried to say I was not feeling good because they were taking too much fluid. Whatever. ::) Surprise, surprise he hadn't even charted anything. So anyway, they gave me some Tylenol and Benadryl to help with the reaction and all was well.
Any IV iron preparations should go over an hour, with some sort of bard or med pump. I've went round and round with a nephrologist on this, who insists that 15 min. is just fine. I had 30 yrs experience in critical care with non dialysis pts. Infusing iron too fast will in some cases make their Blood pressure non-existant. On occasion the BP may not drop for 30 to 60 min following the iron infusion. When it does, it's dramatic & stays down for awhile. I've never seen the "red mans syndrone". I've never stood or sat down & pushed IV iron. If your hemodialysis facility is pushing all Venofer (iron surcose), they should push 1 cc at a time over a minute. Come back 10 to 15 min. later & push another cc. That should not cause a problem.
BlueKat
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I posted about Arlene Mullin and Dialysis Advocates a few posts back in this thread:
http://ihatedialysis.com/forum/index.php?topic=11853.25 (2nd from the bottom)
I just wanted to mention Arlene has been posting more patient stories: http://dialysisadvocates.com/patient-stories/
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And now there is a message board: http://dialysisadvocates.com/discussions/
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I read the first post on this topic. My grandma does RAI for her dialysis and they are nice but sometimes lack of care. One day my grandma went to do her dialysis and she has problems with her bp. That day she was moaning because he didnt feel good. She said she feels like she's gonna faint or die. They said oh no you look good! Your ok! 5 minutes later she feels even worse she says to the nurse "nurse I'm gonna go to sleep I feel no good." They look at her bp readings and he bp is dropping by the second! The nurse shouts to the other nurse to get extremely salty soup for my grandma I eat. I don't think that's right they waited till the last minute. RAI has posters all over to complain and I told my grandma if that ever happens you need to make a complaint.
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Good work on reporting., that amount of time in inexcusable. With dialysis we have found time is a very valuable commodity. My husband is the patient and we would make his nephrologist aware. We are lucky that she wants him to be as healthy as possible.
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I usually catch errors before they are made, but have had two. Vanco was administered via a 20 minute manual drip rather than 60 minutes as requred to avoid risk of redman syndrom. I addressed the problem by talking to the clinic director who is my doc.
The other was use of a 160 rather than 180 filter when I was a visiting patient at another clinic. When I pointed out the error, I was told "policy is all visitors get the 160". I verified the chain I used has no such national policy, and am pursuing the matter through the chain's formal complaint process.
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From my experience, social workers are not there for the patients.
Simply outrageous treatment G-Ma. You need to find out who's in charge of the unit (but not in there). Put it in writing detail by detail. Cc it to the director but address it to her boss. Cc it to the social worker as well. Her job in part is to advocate for patients. I've never heard of not being hooked up immediately once you've got the needles in your arm. I also completely agree with Stacy about trying to find somewhere else to go. Where's nursewratchet on this for advice. We all know she'll be pissed. Since you did home hemo for a while, would they ever let you hook yourself up and turn up the pump etc.? I'm fuming on your behalf right now. I'd be thinking news reporter right about now but I tend to get a little tetchy when riled.
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Agreed 100%. In my in center unit, my SW was a Medicare paper pusher and in my home dialysis unit, my SW couldn't be bothered to attend my monthly clinic visits because it didn't fit her schedule, even though they were always scheduled over a month in advance. Both were completely useless for me and my situation.
From my experience, social workers are not there for the patients.
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The only time that the social worker helps the patients, it is to line the pocketbooks of the clinic.
Agreed 100%. In my in center unit, my SW was a Medicare paper pusher and in my home dialysis unit, my SW couldn't be bothered to attend my monthly clinic visits because it didn't fit her schedule, even though they were always scheduled over a month in advance. Both were completely useless for me and my situation.
From my experience, social workers are not there for the patients.
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Always remember, it is about the earnings of the company, not the patient, never forget.
Agreed 100%. In my in center unit, my SW was a Medicare paper pusher and in my home dialysis unit, my SW couldn't be bothered to attend my monthly clinic visits because it didn't fit her schedule, even though they were always scheduled over a month in advance. Both were completely useless for me and my situation.
From my experience, social workers are not there for the patients.
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Agreed 100%. In my in center unit, my SW was a Medicare paper pusher and in my home dialysis unit, my SW couldn't be bothered to attend my monthly clinic visits because it didn't fit her schedule, even though they were always scheduled over a month in advance. Both were completely useless for me and my situation.
From my experience, social workers are not there for the patients.
Both the social worker and dietitian at my clinic round at least weekly with the nephrologist. The SW is relatively new to dialysis, but seems to make the effort when patients need her help. Our clinic has a separate employee who handles financial matters.
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Agreed 100%. In my in center unit, my SW was a Medicare paper pusher and in my home dialysis unit, my SW couldn't be bothered to attend my monthly clinic visits because it didn't fit her schedule, even though they were always scheduled over a month in advance. Both were completely useless for me and my situation.
From my experience, social workers are not there for the patients.
Both the social worker and dietitian at my clinic round at least weekly with the nephrologist. The SW is relatively new to dialysis, but seems to make the effort when patients need her help. Our clinic has a separate employee who handles financial matters.
I am glad to hear that, because, in seven years on dialysis, that is not my experience.
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I know its not simple while struggling ESRD, but please try and discover a new Dialysis middle (non-profit if possible, they seem to have the best care) and get your proper care handled. None of the people have the right mind-set for looking after for sufferers.
Edited: Link removed - okarol/admin
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The care is shocking at some places .... i have once attempted suicide due to the way i was being treated by a memeber of staff ..... 13 years on im still mentally scarred by her "the honey monster" off the sugar puffs advert. It wasnt the kidney failure that made me suicidal .... it was the way i was being treated.
Another place i was also being miss treated by the main sister "wicked witch" ... she was so evil. Once i was on my own in a side ward on dialysis, i became very ill towards the end. i suffer from bad headaches and migraines often, this day was a bad one. My head was pounding, veins popping out of the sides of my head. I was bright red sweating with hot flushes, i started being sick which led to me getting cramp in my neck and stomach.
At this point i knew it was best for me to come off the machine, i still have to drive myself home in this state! I press my buzzer, a nurse (i will call her nurse A) comes, i request to be taken off as i'm too ill to continue, its obvious im in a bad way ..... nurse A leaves the side room i am in, she go's to find "wicked witch" sister who tells her not to take me off .... to just leave me alone to complete my time (still had 1 hr left of 4).
After another 10 minutes passed im still on the machine, no nurse with me, head pounding, sweat dripping from me, i feel like im going to die ..... and now i feel like no-one is helping me ....
I re press my alarm buzzer for some assistance .... after a short while nurse A returns. I request to be taken off (2nd time i asked her now) ..... nurse A responds with "Angela (wicked witch) says im not allowed to take you off and you have to do your full time" ...... i said no please i need to come off NOW!!! ..... nurse A walks out of my side room leaving me on dialysis in a bad state.
By now i realise im being ignored, my request to be taken off is useless, i now feel like a prisoner ... a dying one.
I can't believe im being left on the machine in this state, i press my alarm buzzer again and no-one comes to my assistance within 10 minutes. i now realise all the staff are ignoring me, i know they are only doing it because the wicked witch has told them to.
There was only 1 option left for me ....... take myself off the machine whilst suffering from a severe migraine and cramps. Whilst taking out my needles i forgot to stop the machine .... as you can imagine there was a bit of a mess. My mind was not able to think or concentrate clearlly and panic set in as the machine started alarming and blood was going everywhere.
I finally got myself taped up ready to go home, walked out of my side room onto the main unit ..... all the staff were sat around the nurses station .... the shock on their faces that i had taken myself off the machine said it all ... they all knew i was being ignored in that room.
Wicked witch comes over to me and shouts at me like a child ..... then punishes me from that point onwards by banning me from dialising in side rooms. She said "you are going where i can see you from now on".
I had had enough at this point, i was 7 year into dialysis and couldn't see a way forward anymore, i couldn't deal with this life 3 times a week anymore .... i started to plan my 2nd suicide attempt.
I started to write a letter this time about why i was killing myself, so hopefully my family would understand .... maybe even take legal action against the NHS .... this time i would not fail. There would be no overdose of sleeping pills this time (1st failed suicide attempt) ..... this time i was planning to ride my bike into a wall at 140 mph, it would be fast and i wouldn't feel much pain, if any at all.
Would luck have it ........ 1 night at 2.22am i got a phone call from the hospital, i was called up for a transplant!!! Amazing timing!!!!
..... had that transplant not come when it did ..... i'm positive i would of been dead the following week by suicide due to the way i was being treated during dialysis.
I could go on forever on the miss treatment i have received. I have been a renal patient since i was first diagnosed with Alport syndrome at the age of 5 yr old. I am now 34 yr old.
29 years of treatment in the NHS mistakes and miss treatment has turned me into an absolute mental wreck.
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The care is shocking at some places .... i have once attempted suicide due to the way i was being treated by a memeber of staff ..... 13 years on im still mentally scarred by her "the honey monster" off the sugar puffs advert. It wasnt the kidney failure that made me suicidal .... it was the way i was being treated.
Another place i was also being miss treated by the main sister "wicked witch" ... she was so evil. Once i was on my own in a side ward on dialysis, i became very ill towards the end. i suffer from bad headaches and migraines often, this day was a bad one. My head was pounding, veins popping out of the sides of my head. I was bright red sweating with hot flushes, i started being sick which led to me getting cramp in my neck and stomach.
At this point i knew it was best for me to come off the machine, i still have to drive myself home in this state! I press my buzzer, a nurse (i will call her nurse A) comes, i request to be taken off as i'm too ill to continue, its obvious im in a bad way ..... nurse A leaves the side room i am in, she go's to find "wicked witch" sister who tells her not to take me off .... to just leave me alone to complete my time (still had 1 hr left of 4).
After another 10 minutes passed im still on the machine, no nurse with me, head pounding, sweat dripping from me, i feel like im going to die ..... and now i feel like no-one is helping me ....
I re press my alarm buzzer for some assistance .... after a short while nurse A returns. I request to be taken off (2nd time i asked her now) ..... nurse A responds with "Angela (wicked witch) says im not allowed to take you off and you have to do your full time" ...... i said no please i need to come off NOW!!! ..... nurse A walks out of my side room leaving me on dialysis in a bad state.
By now i realise im being ignored, my request to be taken off is useless, i now feel like a prisoner ... a dying one.
I can't believe im being left on the machine in this state, i press my alarm buzzer again and no-one comes to my assistance within 10 minutes. i now realise all the staff are ignoring me, i know they are only doing it because the wicked witch has told them to.
There was only 1 option left for me ....... take myself off the machine whilst suffering from a severe migraine and cramps. Whilst taking out my needles i forgot to stop the machine .... as you can imagine there was a bit of a mess. My mind was not able to think or concentrate clearlly and panic set in as the machine started alarming and blood was going everywhere.
I finally got myself taped up ready to go home, walked out of my side room onto the main unit ..... all the staff were sat around the nurses station .... the shock on their faces that i had taken myself off the machine said it all ... they all knew i was being ignored in that room.
Wicked witch comes over to me and shouts at me like a child ..... then punishes me from that point onwards by banning me from dialising in side rooms. She said "you are going where i can see you from now on".
I had had enough at this point, i was 7 year into dialysis and couldn't see a way forward anymore, i couldn't deal with this life 3 times a week anymore .... i started to plan my 2nd suicide attempt.
I started to write a letter this time about why i was killing myself, so hopefully my family would understand .... maybe even take legal action against the NHS .... this time i would not fail. There would be no overdose of sleeping pills this time (1st failed suicide attempt) ..... this time i was planning to ride my bike into a wall at 140 mph, it would be fast and i wouldn't feel much pain, if any at all.
Would luck have it ........ 1 night at 2.22am i got a phone call from the hospital, i was called up for a transplant!!! Amazing timing!!!!
..... had that transplant not come when it did ..... i'm positive i would of been dead the following week by suicide due to the way i was being treated during dialysis.
I could go on forever on the miss treatment i have received. I have been a renal patient since i was first diagnosed with Alport syndrome at the age of 5 yr old. I am now 34 yr old.
29 years of treatment in the NHS mistakes and miss treatment has turned me into an absolute mental wreck.
Dear DeadAlive, I do hope your transplant is still successful and you are still "with us" and carrying on.
Like yourself I have had unfortunate battles with terrible NHS-medics as well and can understand where you are coming from...
Good luck wishes from Kristina. :grouphug;
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I don't kkow if there is, but there should be laws, measures, policies of some sort, that treatment, or more correctly the lack of CARE in treatment, should be actionable. At the very least termination of employment and a ban on future employment of that type.
Patients cannot be mistreated, staff cannot be allowed to mis-treat patients.
I join Kristina in Praying this Member report a successful transplant and doing well. He certainly has had a very stressful time which had driven him to the point of considering suicide.
This makes me wonder, if he was abused this bad, how many other have been, and still are, abused by this Clinic?
Have there been suicides from this abuse?
This posting needs to be brought to the attention of a Patient Advocate of NHS. Hopefully it will create such a stir that this type of mis-treatment will be investigated and dealt with.
Take Care,
Charlie B53
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I don't kkow if there is, but there should be laws, measures, policies of some sort, that treatment, or more correctly the lack of CARE in treatment, should be actionable. At the very least termination of employment and a ban on future employment of that type.
Patients cannot be mistreated, staff cannot be allowed to mis-treat patients.
I join Kristina in Praying this Member report a successful transplant and doing well. He certainly has had a very stressful time which had driven him to the point of considering suicide.
This makes me wonder, if he was abused this bad, how many other have been, and still are, abused by this Clinic?
Have there been suicides from this abuse?
This posting needs to be brought to the attention of a Patient Advocate of NHS. Hopefully it will create such a stir that this type of mis-treatment will be investigated and dealt with.
Take Care,
Charlie B53
Thank you Charlie for your kind concern, I appreciate it very much.
... If you have a look at some of my "older" writings here on IHD, from when I first joined, it becomes clear, that DeadAlive is unfortunately not alone to endure terrible problems with NHS-medics and NHS-staff...
... Fortunately, as a happily married person in a steady relationship, where my husband and I support each other and can talk about practically everything with each other, I am also - by my very own character and attitude - luckily not the type of person to ever consider suicide ... But I can assure you that my husband and I have gone through terrible and some long-standing battles with certain NHS-medics, especially since I suffer from very rare inherited disease-variations of SLE/MCTD etc., for which there is hardly any real medical specialist, but ever so many medical "wannabe's" who claim to be specialists for rare diseases like mine ... The point of their claim is, of course, that real NHS-specialists always receive a much bigger pay package at the end of the year ... But these medical "wannabe's" may create real medical problems for NHS-patients suffering from rare diseases, because NHS-medical specialist "wannabe's" are often not medically able or qualified to really medically look after rare-disease-patients ... and unfortunately that often creates a chain-reaction of real medical catastrophies for such victimized patients ...
... Let's hope DeadAlive enjoys his successful kidney-transplant for many years to come and hopefully he/she has a chance to get over the terrible medical traumas with NHS-medics he/she had to endure before the transplant... :grouphug;
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I do not doubt that buried deep within my WASP upbringing in middle class America that I still have some roots of Bias. I know this, acknowledge the possibility, and WATCH for it, to make sure that I do NOT use it to judge anyone. Or attempt to discriminate anyone one from everyone else that should be entitled to the Freedoms and Rights that we ALL should have.
I consider myself somewhat educated, while not a PhD, or a Masters, And I dropped before getting my Bachelors, but not for a lack of credits. I have excess credits. I was a student bum/genius, for a number of years.
But in this day, with so many people, supposedly educated, I do not understand how some can still be so barbaric, as to display hate and contempt for another. This drives me absolutely nuts. I was taught that we were ALL granted these God Given Gifts, yet so many squander them.
I better quit right here, this could get pretty long otherwise. I just wanted to give you an idea where My head is at.
Take Care,
Charlie B53
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The care is shocking at some places .... i have once attempted suicide due to the way i was being treated by a memeber of staff ..... 13 years on im still mentally scarred by her "the honey monster" off the sugar puffs advert. It wasnt the kidney failure that made me suicidal .... it was the way i was being treated.
Another place i was also being miss treated by the main sister "wicked witch" ... she was so evil. Once i was on my own in a side ward on dialysis, i became very ill towards the end. i suffer from bad headaches and migraines often, this day was a bad one. My head was pounding, veins popping out of the sides of my head. I was bright red sweating with hot flushes, i started being sick which led to me getting cramp in my neck and stomach.
At this point i knew it was best for me to come off the machine, i still have to drive myself home in this state! I press my buzzer, a nurse (i will call her nurse A) comes, i request to be taken off as i'm too ill to continue, its obvious im in a bad way ..... nurse A leaves the side room i am in, she go's to find "wicked witch" sister who tells her not to take me off .... to just leave me alone to complete my time (still had 1 hr left of 4).
After another 10 minutes passed im still on the machine, no nurse with me, head pounding, sweat dripping from me, i feel like im going to die ..... and now i feel like no-one is helping me ....
I re press my alarm buzzer for some assistance .... after a short while nurse A returns. I request to be taken off (2nd time i asked her now) ..... nurse A responds with "Angela (wicked witch) says im not allowed to take you off and you have to do your full time" ...... i said no please i need to come off NOW!!! ..... nurse A walks out of my side room leaving me on dialysis in a bad state.
By now i realise im being ignored, my request to be taken off is useless, i now feel like a prisoner ... a dying one.
I can't believe im being left on the machine in this state, i press my alarm buzzer again and no-one comes to my assistance within 10 minutes. i now realise all the staff are ignoring me, i know they are only doing it because the wicked witch has told them to.
There was only 1 option left for me ....... take myself off the machine whilst suffering from a severe migraine and cramps. Whilst taking out my needles i forgot to stop the machine .... as you can imagine there was a bit of a mess. My mind was not able to think or concentrate clearlly and panic set in as the machine started alarming and blood was going everywhere.
I finally got myself taped up ready to go home, walked out of my side room onto the main unit ..... all the staff were sat around the nurses station .... the shock on their faces that i had taken myself off the machine said it all ... they all knew i was being ignored in that room.
Wicked witch comes over to me and shouts at me like a child ..... then punishes me from that point onwards by banning me from dialising in side rooms. She said "you are going where i can see you from now on".
I had had enough at this point, i was 7 year into dialysis and couldn't see a way forward anymore, i couldn't deal with this life 3 times a week anymore .... i started to plan my 2nd suicide attempt.
I started to write a letter this time about why i was killing myself, so hopefully my family would understand .... maybe even take legal action against the NHS .... this time i would not fail. There would be no overdose of sleeping pills this time (1st failed suicide attempt) ..... this time i was planning to ride my bike into a wall at 140 mph, it would be fast and i wouldn't feel much pain, if any at all.
Would luck have it ........ 1 night at 2.22am i got a phone call from the hospital, i was called up for a transplant!!! Amazing timing!!!!
..... had that transplant not come when it did ..... i'm positive i would of been dead the following week by suicide due to the way i was being treated during dialysis.
I could go on forever on the miss treatment i have received. I have been a renal patient since i was first diagnosed with Alport syndrome at the age of 5 yr old. I am now 34 yr old.
29 years of treatment in the NHS mistakes and miss treatment has turned me into an absolute mental wreck.
Guess, what made me to come here again : I went recently through a most frightening and horrifying experience with a "witch in a wardrobe" and that experience brought me here to research more and when I started to read DeadAlive's experiences with a main sister at his dialysis-center he called "wicked witch", I realized instantly, that it might be the same "witch in a wardrobe" I also had the misfortune to come across recently.
I am not surprised that he even considered suicide, since she was so wicked to him and she was even deliberately wearing his spirits down to such a low degree and, of course, she knew, that there was no way out for him, poor soul : he was alone and isolated at the time when he had the misfortune to come across her wickedness and he needed dialysis three times a week and she was there ... probably waiting ... and ... my good luck, when I had the misfortune to come across her horrible wickedness, was, that at the time I had a witness, who was, like myself, taken by surprise and, like myself, was also left to feel totally horrified and stunned...
It feels strange to re-read about DeadAlive's encounter with her wickedness and it also gives me a better chance to "steel myself" as best as I can from now on against her sadistic and horrible wickedness ...
Just imagine : DeadAlive felt forced to take himself off the dialysis-machine at the dialysis-center without any assistance, whilst he also felt seriously unwell and it must have been absolutely horrific and terrifying, when her wickedness left him in such a terrible desperate situation...
I do now understand perfectly, where he is coming from. Unfortunately our NHS-health-system is enormously huge and because of that, there is unfortunately "some space left for very bad apples".
But : needing dialysis three times a week and being at the same time on the kidney-transplant-waiting-list, leaves unfortunately hardly any chance to complain about such a "wicked witch", because the same dialysis-technicians (plus the "wicked witch") also work in the transplant-department on and off in the same district ... So, if a kidney-waiting-list-candidate in their district thinks seriously about complaining about such a "wicked witch" at the dialysis-center in that district, they have to seriously re-think again and consider, that with a complaint, they might create a chance for the "witch in the wardrobe" to come back at them in a big way, especially when they are at their most vulnerable, due to having undergone their transplant in their district and being in urgent need of good medical nursing-care (and there might be probably no chance to have a witness 24/7) ... Perhaps that might also be the reason, why she (if it is her, but I am pretty sure it is her) is still so prominently in place in the district and, I have already noticed, that she rather specializes in compos mentis (of sound mind) ESRF-patients who try very hard to be as fit as possible for their transplant. She leaves the "stretcher-cases", who are not on the transplant-waiting-list alone, since most of them would probably not even comprehend what she means in her carefully thought out and carefully fine-tuned wickedness...
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The legalities may be a bit different in England, however, here in the US the keywords would be "I am revoking consent for this treatment, take me off now" would get their attention.
The problem with taking yourself off without stopping the machine and flushing back your blood is that you are going to drop your hgb/crit when you are probably already a bit anemic from renal disease.
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The legalities may be a bit different in England, however, here in the US the keywords would be "I am revoking consent for this treatment, take me off now" would get their attention.
The problem with taking yourself off without stopping the machine and flushing back your blood is that you are going to drop your hgb/crit when you are probably already a bit anemic from renal disease.
Good point Simon, but I am still left wondering what precisely it was that brought DeadAlive to feel so bad, sweating, being sick etc.? Could it have been connected to the "wicked witch" and what she might have done to him, something that only experienced & trained dialysis-employees could possibly know about ?? After all, as he tells us : his head was pounding, veins popping out of the sides of his head. He was bright red sweating with hot flushes and he started being sick which led to him getting cramps in his neck and stomach before taking himself off the dialysis machine in total desperation ...
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..............., as he tells us : his head was pounding, veins popping out of the sides of his head. He was bright red sweating with hot flushes and he started being sick which led to him getting cramps in his neck and stomach before taking himself off the dialysis machine in total desperation ...
It is way too late now but an immediate trip to the ER for blood tests, weight check, etc., may have been able to prove either too much water taken off too fast, or possibly even an injection of something he shouldn't have had.
This could easily have been a bad reaction to something. Figuring out what could be very difficult. Thus the reason for immediate action if anything like this ever happens.