INCENTER DIALYSIS CARE --NEED SOME PT INPUT

[dialysisadvocate]

I am almost finished with a special project that I have been asked to work on by some individuals. However, before I start my closing comments, I thought I would reach out to all of you here and ask the question --WHAT WOULD YOU LIKE TO SEE CHANGED RELATED TO YOUR CARE IN YOUR DIALYSIS UNIT?

I have communicated with hundreds and hundreds of patients, but since, one patient personally asked me to start contributing here, I wanted to get all of your input.  If you prefer, you can certain email me personally at RMiklesRN@aol.com

Thanks,  Roberta Mikles, BA RN Dialysis Paitent Safety Advocate (because no one should experience that which my late father did during his six years of dialysis, e.g. lack of compliance with faciliity policies and serious retaliation)
www.qualitysafepatientcare.com

[HILINE]

marked h/c parking spots.. no doctors hours for non-dialysis people

[dialysisadvocate]

marked h/c parking spots.. no doctors hours for non-dialysis people

Thanks, Andrew -- understand handicap parking but am not sure I understand about physician hours for non dialysis paitents.. Can you explain further, thanks, Roberta

[HILINE]

my center has non dialsis patients visit doctors at the center. it causes a big parking problem

[sullidog]

dialysis centers cutting patient times or refusing not to run them at all when they are late. This is actually a new policy with our unit and the state didn't find any violation of this behavior. I can understand if the patient is constantly late, but things happen that are beyond the patient's control like transportation messing up, etc. that is not the patient's fault.
Also something I'd like to see is a patient to staff ratio, we have limited staff here at our center, and in ohio that is not a state violation.
I'd also like to see better arangements made for patients if something breaks down in the unit where it has to close down, they will usually run patient's the next day but this isn't always the case and some patients are more serious then others and do need to run that same day or the day after.
Lastly I'm finding that centers tend to hier nurses with no dialysis experience, including my center at one time and it was a total nightmare. I think at least you have to have at least some dialysis experience of some kind before you get hiered as a dialysis nurse.
I can't think of anything else.

[Rerun]

I don't understand the POLL at the top?  What is the difference?

Changing care in your unit?

Do you want to change the care in your unit?

[dialysisadvocate]

I am not sure about the 'poll' I did a new thread and might have done it wrong.
roberta

[mikey07840]

marked h/c parking spots.. no doctors hours for non-dialysis people

I think the quote above means that we would like our dieticians, social workers and other non doctors to be available more than 8am to 2pm. At my center they are only available in the mornings three days a week. Not convenient for a noctournal patient like myself.

[RightSide]

1.  Letting us patients into the dialysis center a few minutes before our scheduled dialysis time slot, to unburden ourselves of our heavy winter clothing, use the bathroom, etc.  That way we can be seated in our dialysis chairs, ready to go on time.

I was lucky enough to still be able to pee normally despite ESRD.  But I was being penalized because when I visited the bathroom at the beginning of my session, it meant I would start the dialysis late and then I would have to wait until the other patients had already been cannulated and hooked up until a tech would do me.  I had to visit the bathroom because of my prostate problems--I couldn't sit there for 3 hours being dialyzed otherwise.

2. Much stricter anti-infection protocols.  I've posted about the times when anti-infection protocols were violated or ignored at my center, no reason to repost them here.

3.  Keeping the grounds and parking lot immediately around the dialysis center plowed of snow and ice.  Many was the time when I nearly slipped and fell due to icy conditions around the dialysis center. 


By now, you can probably guess that I don't live in Florida.   

[cattlekid]

Oh, let's see....the list is endless:

1.  A fourth shift that starts at 7:00 PM.  This way, those of us still working would not have to impact our work hours and if you're on T-TH-S, your Saturday afternoons are still available.

2.  A complete redesign of the dialysis center.  Each chair should have curtains at the minimum.  The machines should all be hooked up to a central computer display that is constantly monitored.  Techs should carry pagers/phones and if a machine is alarming, the tech should receive a page.  Patients should also be able to page the tech instead of having to yell across the center. 

3.  Functional high-speed wireless Internet for patients.

4.  A full complement of satellite/cable channels with TVs where the brightness can be adjusted.  Wireless headphones would be a nice touch.

5.  Orthopedic chairs.  I've spent way too much time at the chiropractor's office dealing with the affects of sitting in a bad chair 12 hours a week.

6.  This is the biggest one...social workers and dietitians who understand the needs of those of us who are young and working on dialysis.  The ones in my center can't seem to get out of the mindset that everyone on dialysis is elderly and dependent.  They have no real-world strategies for integrating dialysis into the lives of a young working person.

I could keep going on and on but I think you get the idea.  Us dialysis patients are pretty much treated like crap and told that we should be grateful for it.   

[needlephobic]

I belive all staff should have a 8 week or more study on phobias like me and my needle phobia to understand my phobia and help me with my phobia and not stand over me complaining when my chest cath acts up like I am not there.

[Lillupie]

hi,
 I agree with you here. I highly doubt they would ever put money into doing this. High speed wireless would be great. When I was on in-center hemo for a few weeks we would not even plug in our laptop computers or anything else electronic. I totally agree with you that we are treated like crap and we should be thankful for it! Whatever.

Lisa

Oh, let's see....the list is endless:

1.  A fourth shift that starts at 7:00 PM.  This way, those of us still working would not have to impact our work hours and if you're on T-TH-S, your Saturday afternoons are still available.

2.  A complete redesign of the dialysis center.  Each chair should have curtains at the minimum.  The machines should all be hooked up to a central computer display that is constantly monitored.  Techs should carry pagers/phones and if a machine is alarming, the tech should receive a page.  Patients should also be able to page the tech instead of having to yell across the center. 

3.  Functional high-speed wireless Internet for patients.

4.  A full complement of satellite/cable channels with TVs where the brightness can be adjusted.  Wireless headphones would be a nice touch.

5.  Orthopedic chairs.  I've spent way too much time at the chiropractor's office dealing with the affects of sitting in a bad chair 12 hours a week.

6.  This is the biggest one...social workers and dietitians who understand the needs of those of us who are young and working on dialysis.  The ones in my center can't seem to get out of the mindset that everyone on dialysis is elderly and dependent.  They have no real-world strategies for integrating dialysis into the lives of a young working person.

I could keep going on and on but I think you get the idea.  Us dialysis patients are pretty much treated like crap and told that we should be grateful for it.   

[ESRD Survivor]

I have a good dialysis center, however they refuse to upgrade our internet.  We have a tv with internet on it, however it sucks so bad it is worthless.  I get told that the people who hooked it all up our out of business and there is nothing they can do.  BS.

My center is to open at 5:45 am for the first hook ups, yet we are lucky to be let in by 6:15 am so it would be nice if they could open on time.  Sometimes we stand outside waiting just for the lobby to open.  There is always some excuse why the are running late.

[lmunchkin]

Well, even though my husband is not In-Center anymore. There is one thing among all the others, that I believe would help patients out immensely, is having their spouse to be in with them!  It helps them to keep from getting bored, and gives them better peace of mind to know that they are there with them.

I have never understood why that is!  I am convinced that that was one reason my husband wanted out and honestly, I felt left out in the process! I did not like that one bit!  But there are alot of other issues with in-center like, Proper sterilization, tech's "attitudes" towards not only patients but the family also!

That 2nd and last clinic we were in, was terrible and very insensitive to my husband!  Tech got smart with him one time in there and had the Head Nurse not step in when he did, one of us would have ended up in the hospital or jail. A month after that, a patient finished D. and left out the door bleeding from clinic to her automobile in parking lot.  She lost alot of blood and was faint!  I was in my car waiting for husband to get off when I saw her, and grabbed a towel out of my car and put it on her arm as she collapsed!

Nurse or tech, came fast walking out of the clinic saying, "Well she is always pulling her bandages off too, soon! So if she bleeds to much, it is her fault". I told her to shut up and have the Head Nurse come out.  I would not release this patient in her care.  She said she would call the police, and I told her to go ahead and do it. She turned and went inside to get him.  While in there, I got Miss Johnson to sit on bench outside under cover. She thanked me and said she was an elderly and appreciated someone sticking up for her.  She had no family, she was alone!

She was not the only one to recieve this kind of treatment.  Last time we went to see people at that clinic, staff & patients were not there! An almost complete turnover!

lmunch

 

[brandi1leigh]

We have wireless at my center. The firewall is pretty stringent, but it's better than nothing. Overall, I am pretty happy with the care I receive. I've said often on this board that I feel very lucky when I read some of the stories. But I feel that there is always room for improvement.

Things I wish for:

1). Social worker and dietitian who recognize that my needs at 35 are different than the patients who are in nursing homes.

2). Input into scheduling. I was asked what shift I wanted to be on, but beyond that I am randomly assigned times to be at the center. No one asked what time would be best or why. I am also shuffled around in my center a lot because I am younger.

3) Consistent chair, start time, tech and nurse. There seems to be some sort of random assignment of all these things. I feel like I am constantly explaining what is going on with me to a different person everyday. Even if they rotated a couple of people it would be better than having someone different every day with no rhyme or reason.

4) Some way to contact a tech or nurse if I need something. A way that doesn't constitute me yelling, waving frantically or trying to make eye contact.

5) I go back and forth on privacy curtains. For me personally I wish we had them because I am a very private person. I don't really chat with other patients; however, I know that most of the patients at my center really enjoy interacting with others.

I'm sure I'll think of more later...

[dialysisadvocate]

Thanks to all of you who have provided such valuable input. I will be getting back with you all .... again, your feedback is of GREAT value.. please continue to provide such.
Roberta Mikles BA RN
(uncompensated) dialysis patient safety advocate (non connected to the industry in any way)
www.quaitysafepatientcare.com

[cattlekid]

Now this I don't understand....are you saying that you don't have a consistent time that you start treatment??  I would be beside myself if this was the case.  I start every day at 3:00 PM and I am in my chair and hooked up by 3:15 at the latest.  On Saturdays, I usually come in earlier but this is a decision between me and the tech. 

I would definitely go up the chain about this.  How are you supposed to plan your schedule if they can't give you a consistent start time?  If you are still working, I can definitely see where this would be an issue.

2). Input into scheduling. I was asked what shift I wanted to be on, but beyond that I am randomly assigned times to be at the center. No one asked what time would be best or why. I am also shuffled around in my center a lot because I am younger.

3) Consistent chair, start time, tech and nurse. There seems to be some sort of random assignment of all these things. I feel like I am constantly explaining what is going on with me to a different person everyday. Even if they rotated a couple of people it would be better than having someone different every day with no rhyme or reason.

[sullidog]

At my center yes I do not get on on time half the time. Also in off times I wait for almost an hour before I am taped up so that means I'm holding my sites for an hour! I understand there's other patients, but I shouldn't have to wait that long! Also don't even get me started on dietitions talking to us like we're children! I know what I did wrong, you don't have to talk to me like I'm a child, and if I wanna mess up that's my fault and I don't have to know about it.

[Lillupie]

Also don't even get me started on dietitions talking to us like we're children! I know what I did wrong, you don't have to talk to me like I'm a child, and if I wanna mess up that's my fault and I don't have to know about it.

OH MY GOD, OH MY GOD. That is sooo true. My dietition is really a nice person, but oh my God does she talk down to us. I have been doing this crap for 4 years, and she still takes the "report card" and says in her high pitched voice "here is your protein, it is goood. Here is your potassium, it is good", and she does that for every lab, as though I cant read  . Im begiing to think that to these people who get paid good think that we on dialysis are a bunch of dumb idoits! Because I KNOW HOW TO READ. I mean seriously, does she have to sit there and go over each and every single lab like we are 5?!! I mean I can see doing that maybe the first year.

[brandi1leigh]

Now this I don't understand....are you saying that you don't have a consistent time that you start treatment??  I would be beside myself if this was the case.  I start every day at 3:00 PM and I am in my chair and hooked up by 3:15 at the latest.  On Saturdays, I usually come in earlier but this is a decision between me and the tech. 

I would definitely go up the chain about this.  How are you supposed to plan your schedule if they can't give you a consistent start time?  If you are still working, I can definitely see where this would be an issue.

It's getting better. For my first year at the center, they had a start time they "aimed for". Sometimes you would get on right at your time, other times you might be waiting an hour. It just depended on how fast your tech was working that day. They've made some system improvements, some of which I'm happy about and some of which I'm not. But at least our start times have become a little more consistent. When I spoke to the center manager, she told me their new goal is to have you on within 15 minutes of your time. I can deal with that. I don't work, so that wasn't an issue, but I don't drive myself (I just feel so awful when I come off), so coordinating my ride was sometimes difficult.

I also completely agree about the dietitian treating you like you're 5. Honestly, I never liked how the dietitian treated me, but I couldn't put my finger on what it was. But you guys have nailed it. She treats me like I'm 5...

[HILINE]

I get on 10 minutes  early most of the time. if their is a machine or water problem it will be a little late. most of the techs will put me on as soon as they can  , except one

[HILINE]

At my center yes I do not get on on time half the time. Also in off times I wait for almost an hour before I am taped up so that means I'm holding my sites for an hour! I understand there's other patients, but I shouldn't have to wait that long! Also don't even get me started on dietitions talking to us like we're children! I know what I did wrong, you don't have to talk to me like I'm a child, and if I wanna mess up that's my fault and I don't have to know about it.

Can't you go to another center ?

[Rerun]

I still would like volunteers to be allowed in to give us manicures and mini-pedis.  And hot tea.  Just a thought.

       

[sullidog]

I do like them reading the labs to me cause I'm blind and can't read them myself, but it's the way she does it.
I've been denied center change requests.

[HILINE]

I do like them reading the labs to me cause I'm blind and can't read them myself, but it's the way she does it.
I've been denied center change requests.

I thought about changing Centers before I talked to the new FA.  I called another Center, getting permission was not mentioned . how can you be denied ?





EDITED:  Fixed quote tag error - jbeany, Moderator