Questions

[dialysisadvocate]

(1) Why do most of you prefer to post anonymously? Is this due to fear that someone at your unit might see a post and you might experience a degree of retaliation from staff?

(2) How many of you have requested your facility's inspection report? If so, what was the staff's response? Were you able to read it, if not, what were you told?

(3)If you are in a Davita unit - have you ever been given the wrong dialyzer? If so, what happened? what did staff state? Has it happened again?

(4) How many of you are aware that staff should be hand washing before putting on gloves and before inserting needles, if the gloves touch the machine panel, staff should be removing and putting on clean gloves..?

(5) How many of you have had to go to the hospital for something related to an incident at the facility?
tHE ABOVE QUESTIONS ARE TO GET AN IDEA ABOUT HOW MANY PATIENTS CONTNUE TO HAVE PROBLEMS IN THEIR UNITS AND HOW YOU FEEL ABOUT SUCH.

Roberta Mikles Dialysis Patient Safety Advocate ---- A NEW 800 NUMBER FOR PATIENTS TO CALL WHO ARE HAVING PROBLEMS IN THEIR UNITS - WE DO NOT CHARGE FOR HELPING PATIENTS ANYWHERE IN THE UNITED STATES. 1-800=847-8842  iF YOU ARE A PATIENT AND WANT TO GET INVOLVED IN THE 'NEW' DIALYSIS COALITION NOT, REPEAT NOT CONNECTED TO THE INDUSTRY, CALL OUR 800 NUMBER

OPINIONS OF ROBERTA MIKLES



TOPIC MOVED to appropriate Section - Bajanne, Moderator

[galvo]

Why do you prefer to post anonymously?

Are you a management stooge?

[billybags]

Nice one Galvo! 

[dialysisadvocate]

Actually I am far from working in the dialysis industry - you can read my story at www.qualitysafepatientcare.com
I am trying to get more insight in to the areas  of retaliation by staff upon patients - When my father started dialysis I posted anonymously, then started putting my name. I knew they )some at this unit) might be  watching what I wrote as they knew I was invovled in advocacy?

I certainly did not mean to offend anyone as I am an outspoken advocate for improved care in facilities throughout the United States. We receive complaints from patients, from all over the US and work with them to get the safe care they are suppose to --
We have posted the California inspection reports for those of you in California at our website -..

Again, did not mean to offend anyone, I am just dedicated to that which I do because of what my late father experienced with mistakes that were preventable and retaliation  for speaking out to ensure safe care and correct care was delivered
Roberta Mikles - opiinions --- www.qualitysafepatientcare.com

[Chris]

There are many reasons not to use real names, mainly privacy from idiots on the internet, but then possibly from family and friends. Easier to talk to others about what's going on without using real names.

[dialysisadvocate]

Yes, I agree with what you stated about posting anonymously ---:)
there is a freedom of speech that has no restrictions  ------- 
roberta

[ChrisEtc]

What do you mean by the wrong dialyzer?

[dialysisadvocate]

Some facilities do 'reuse' which means that they re-use the dialyzer (articifical kidney - the long cylinder looking piece that is on the machine that the blood goes through) -- FMC, to my knowledge does not use these. When my father was visiting WA State - he went to a unit in Mt. Vernon and Oak Harbor -- The unit in Mt Vernon, from recall did re=use but he requested single use (use one dialyzer and throw it out)... I can't recall the one in Oak Harbor (I think it was Oak Harbor, not a Davita unit but a privately owned facility)...There is a certain procedure where two staff have to check to make sure that the right patient is getting their dialyzer -- there are times when the patient gets another patient's dialyzer --Your name should be on the dialyzer so you can check. If the facility is doing re-use they have to inform you when you start dialysis and have to also inform you that you can opt out of that and use single-use... Ask your facility if they re-use -- you should have been made aware of this when you started at the unit
opinions of Roberta Mikles - Dialysis Patient Safety Advocate
www.qualitysafepatientcare.com

[ChrisEtc]

I'm pretty sure they throw it away each time.  Re-using it doesn't sound very safe, yuck. 

[MomoMcSleepy]

I post anonymously so I can speak freely.  If my friends and family were reading (though nothing if they felt like it they could find me) they might not like Austin say.  In my family, they don't like for us to talk about ourselves, or complain about problems, and thera's kind of the point of this place, to share experiences AMD rant.

also, I am afraid that if I show I am scared or don't want to take a med or have a surgery, I might get kept off the list, mi mentioned that it is hard to talk to friends and family about my feelings and almost got a psych denial because I don't go to counseling.. I am even afraid to talk to my peer mentor, afraid she's a spy for my social worker or something, though she probably doesn't even know her.

I felt really judged by the transplant team, though everyone was nice, and I want to get on the list!

plus, we share medical info., it seems foolish to also share full names, durr.

[dialysisadvocate]

I fully understand the fear as I lived it ---
Roberta

[paris]

What purpose would be served if we used our full names?   It is easier to have free speech if you are anonymous.  But, after you have been here awhile, you get to know people personally through pm's and meet ups.   But,  I don't put my real name on any internet forum. 

Why do you use a screen name?     And your questions aren't new ones to this kidney community.  Members here have gone through lots of horror stories and experienced problems from centers and doctors for years.     And staff wearing gloves?  I'm not letting anyone near me without gloves.  When you are the patient, you become super cautious about every procedure.   

I believe there are many, many patient advocates here.  Those who are able, are always making suggestions and trying to improve situations.  This is one smart group, with tons of experience and knowledge.     

[Bajanne]

  Very well said, Paris!

[dialysisadvocate]

paris, I agree about free speech and the ability to post without any fear of any type of repercussions. Been there.  And, please accept my apologies, I was NOT, in any way, implying that you all are NOT patient advocates.. I know, as I have watched this site for a long, long time, periodlically posting, that many have experienced the same, or worse than my father experienced, from staff and physician

Our organization, and another that I am involved with -work individually with patients who are having difficulties in their units and not able to resolve problems on their own.. often this entails obtaining attorneys to help, going to corporate, regional, etc. We do not charge patients any fee for this service.

My father passed away two years ago this July 14th and I don't wish on my worst enemy what he experienced e.g. retaliation from staff and covert retaliation from a physician... of course, there were those that provided good care, but the bad apples in the bunch overpowered it all. This is why I continue to try and effect change.  Here in California, there are many problems in units, but if patients (not referring to you, or others, who are educated) if patients do not know the CORRECT practices that staff should be implementing, then they don't know when staff are taking short cuts or not implementing correct practices.

Again, please accept my apologies as I did not mean to imply you all were not advocates -- or had not suffered.
opinions of
Roberta Mikles
www.qualitysafepatientcare.com

[MooseMom]

Roberta, you don't need to apologize for anything!  I've seen your posts all over the web, and I know how valiant an advocate you are, and I understand that your passion comes from seeing what your father went through while he was on dialysis.  I applaud you for continuing your quest for fair treatment for all dialysis patients; it would have been much easier for you to just drop the whole venture upon the death of your dad, but you did not.  You've continued to fight for this fragile population, and your efforts and compassion are admired, valued and appreciated.

Thank you for posting more often here on IHD and for not being scared off by our rants and discontents.  We've had far too many "professionals and advocates" who have joined, have posted a few times and then have buggered off.  But not you, so thank you for sticking around.

[dialysisadvocate]

MooseMom - you are way to kind -- I just wish I could do more to help.  I posted here awhile ago but then got tied up with other things and now am back.  All patients are advocates and this means YOU also  When my father was alive, he, too, was an advocate for himself and other patients in his unit - however, this resulted in major retaliation of which caused him severe emotional distress, along with his hatred of dialysis. Even my speaking out to ensure he received safe care of a quality nature, resulted in further retaliation. I sat with him for close to six years, three days a week and watched him suffer a good deal of the time, knowing how some staff treated him, along iwth the nephrologist -

Fairly recently I filed an official complaint agains the technician that caused him emotional distress -- Now that technicians are certified (mandatory at a federal level) I filed a complaint with the division within the Department of Health that deals with complaints against nursing assistants (nursing homes, etc) and dialysis technicians -- Similar to the Board of Nursing that takes complaints against nurses. I had documented each and almost every incident of harassment -- When this was investigated, I am assuming, which happens often, the staff stuck together and there was defensive documentation in the medical record to protect the staff, etc and physician.. However, even though the staff was basically not found guilty of our complaint -- the bottom line, accoreding to the investigator was the following:
A 'letter of warning' went to the staff  that I filed a complaint against -- the letter this person received stated the following:

PLEASE BE ADVISED THAT SHOULD ANOTHER SIMILAR INCIDENT BE REPORTED TO THE DEPARTMENT, SIGNIFICANT DISCIPLINARY ACTION WILL BE CONSIDERED.”

The Department does not tolerate retaliation .. I was told that even though fault was not found, which we knew ahead of time because we knew the staff stuck together,,, I was informed that this will SEND a message to all (alot of people were interviewed) that you can not treat patients like this and you can have your certification taken away.... And, if this is their living, then they better not treat patients like they do -- The same can be done for nurses.. So with that said, I am sure that my father, looking down is glad that I did this -- when he was alive, although we brought forth concerns constantly about this situation, it continued both overtly and covertly

opinions of Roberta Mikles BA RN Dialysis Patient Safety Advocate
www.qualitysafepatientcare.com