Nobody on call for Christmas and New Year

Discussions for Patients, Family, and Friends HD For Patients
1

Just wondering if anyone has ever received similar info to me today. Letter arrived from Renal Unit Manager saying there will be NO NURSE ON CALL FOR HOME PATIENTS FROM MONDAY TO THURSDAY over CHRISTMAS and between NEW YEARS EVE AND WEDNESDAY the following week. Not even the emergency call number. The letter states that if we have a problem STOP DIALYSIS!

Am I the only one that finds this unacceptable? As a home dialysis consumer I am already saving them over $300000.00 Aussie dollars a year and was told when I began home training there would always be someone on call. To be told this by letter at the last minute sucks! Would be interested to hear if similar service happens in the states.

Mel -not happy with slack Aussie service

2

People here in Uk moan about our health service bit at least we do have 24hr emergancy cover over holiday & weekends if help is needed. Think I would be rather stressed if something did go wrong and no help was there for me.
Hope you don’t have any problems.

3

We got a notice that they would be out for the holidays, but I don’t recall if they said this time that we could not contact them in an emergency. That would be typical for them to write “just stop the tx” like we can do that and it won’t have any effects. Ever since I’ve been on dialysis, there have always been situations where nursing staff put their convenience over patients, so I just don’t expect otherwise. I can understand where they’re coming from. There are probably patients who call for nothing or waste their time. But it’s sad that all patients are lumped into the same category when some may be truly deserving or in need of care. Clinics just make stupid rules sometimes. And even if one could reach an on-call nurse, who wants to call someone who is crabby and unpleasant. Not me- I just try to handle things the best I can myself. Is it fair or right? No, but that’s life.

4

Hi Folks

HI Beachy

Is this the first time that over a holiday that the unit did this?

For me my center is too far to go in a real emergency where my life was in balance I would go to nearest hospital. I just would bring as much information as I could so they do what was needed. But to the main question no in both units I was in the one thing I can say is that we (at least me) are given an phone # to call but it inly to be called in a life or death set up. Were told that if something should happen that the machine breaks down or snow etc, just go on emergency mood as to ration your water ,food etc. The one thing for me if needed I’ll go to the nearest ER . Both my unit that I was with are only open monday to friday 9 to 5 anyway.

as to money it cost the same if I home or in-center. which you think that if I was home I would be the payer money… But I see it now the cost is the same ???

[QUOTE=beachy;15251]Just wondering if anyone has ever received similar info to me today. Letter arrived from Renal Unit Manager saying there will be NO NURSE ON CALL FOR HOME PATIENTS FROM MONDAY TO THURSDAY over CHRISTMAS and between NEW YEARS EVE AND WEDNESDAY the following week. Not even the emergency call number. The letter states that if we have a problem STOP DIALYSIS!

Am I the only one that finds this unacceptable? As a home dialysis consumer I am already saving them over $300000.00 Aussie dollars a year and was told when I began home training there would always be someone on call. To be told this by letter at the last minute sucks! Would be interested to hear if similar service happens in the states.

Mel -not happy with slack Aussie service[/QUOTE]

bob obrien

5

Thanks for your replies. I have calmed down a bit !

Out here we have a publically funded dialysis system and obviously I support that system totally and expect everything to come out fair and equitable at all times. At present the state health system that I am under is being underfunded and renal services are becoming poorly managed and the services provided to my small country home training unit are being squeezed of funds.

Cheers and a HAPPY CHRISTMAS TO ALL

6

I agree this is unacceptable! Nxstage is not much better

7

Beachy;

Here in the USA most clinics close for Xmas Day and Maybe New Years. What we did when we were using the Fresenius doing nocturnal at home. Was plan on NOT doing a TX on the days that there were no support… But in your case since they are not on call for a few days… The only thing that you can do is do your regular TX’s and hpoe for the best… Knowing you and how conifident you are you should not have any problems… You should have a Machine Tech’s number that would be willing to come to your place and repair the Freni if anything went wrong… But after using the Freni for 5 years we had only two machine failures… Both times it was a power fuse failure… Those Freni’s are very reliable machines…

Have a nice Holidays and don’t get upset over things that you have little control of… If something does go wrong with your TX… Just disconnect and head for the closest Hospital and have them do your TX… Any way Hope that option is available…

To keep this from happening again next year… I would start contacting the state’s health department and see if there is any thing that they can do to help home patients… By the way what is happening to the patients that are having their treatments in CENTER???

HemoHelper

8

In the U.S. Medicare regulations require that dialysis facilities have a plan for emergencies and that they teach their patients what to do in the case of an emergency. This should also be the case for home patients. In the case of a true life, limb, or death emergency, call 911 (in the U.S.) and/or go to the closest ER for help.

If you have a question about medications or your dialysis prescription and there is no nurse on call, call your kidney doctor. All patients in the U.S. pay a monthly fee to the doctor to be available to you. Although the nurse is probably the most knowledgeable about your treatment, your doctor should be able to answer questions and suggest what to do.

If you have a question about your machine, start first by looking in the operator’s manual. If that doesn’t fix it, call the company. Typically companies have people on staff that work 24/7, even on holidays to answer patient questions and/or troubleshoot patient problems that can’t be resolved locally.

I don’t know if the same things would work in Australia, but it would be worth a try.

9

Alright beachy! Looks like a little pressure did the job.

Cost-cutting behind service cutback: dialysis patient

Posted Wed Dec 26, 2007 10:09am AEDT

A home dialysis patient says she and about 30 other Northern Rivers patients have been told there is no nursing support for them over the Christmas period.

Melissa Darnley, from Pottsville, says learning to self-administer the treatment is complex, and requires a lengthy training period.

She says a nurse is usually on-call for emergencies, but patients have been told by the North Coast Area Health Service that this year that will not be the case.

Ms Darnley says it is the first time support has been withdrawn, and any complications while using the dialysis machine would be life-threatening.

“I’m probably in a better situation than some, because I know that some have just finished their training, and they would be very nervous about doing it at home,” she said.

“It’s a life-support system, obviously, and it makes me feel I don’t want to dialyse for the couple of days [because] there’s no nurses there.”

Ms Darnley says she thinks cost-cutting is behind the decision.

“It’s definitely not the nurses’ fault,” she said.

“I’m sure that the powers that be, the hospital administrators perhaps, have decided that that’s money that they can’t afford to pay over the holiday period.”

The health service’s Wayne Jones says the letter was sent out to patients warning that there could be a problem with on-call nurses, but that is no longer the case.

“The resources have been identified to ensure that they have the on-call support for the 365 days, including Christmas Day,” he said.

"They were informed there was a worst-case scenario if resources weren’t identified, just to make them aware, so they could organise their dialysis dates around those opportunities.

“But as I said since then, we’ve managed to source the resources so the on-call expertise will be available to them.”

10

LOL Yep Bill A win for the little guy! Don’t you love their “bureaucratic speak” though, “the resources have been identified” and “organise their dialysis around these opportunities”? What a joke!

The world seems like it ain’t such a big place when you can download this newsfeed so quickly across the other side of the globe. I am impressed!

Cheers

11

Also in the local papers today with Freni!

12

Hi Folks

Hello Beachy.

How far are you from your unit and how far from ER? How far are most folks there from the units?
With me I was told to contact dialysis nurse , but in case of life or death go to nearest ER, then once there the people there if need be can call or if things calm down I can call or my wife can call them. My unit is 50 miles away and the ER they work with is 60 miles away. The nearest ER to me is 2 miles.
bob obrien

[QUOTE=beachy;15282]Also in the local papers today with Freni!

13

Great picture Mel. Were you posting to HDC?

14

More than likely Bill! Andy bought me a nice little Macbook for Chrissy. I love it, so easy to manage with one hand :0)

[QUOTE=bobeleanor;15283]Hi Folks

Hello Beachy.

How far are you from your unit and how far from ER? How far are most folks there from the units?
With me I was told to contact dialysis nurse , but in case of life or death go to nearest ER, then once there the people there if need be can call or if things calm down I can call or my wife can call them. My unit is 50 miles away and the ER they work with is 60 miles away. The nearest ER to me is 2 miles.
bob obrien[/QUOTE]

Hi Bob. my Unit is an hours drive away and the nearest ER is 20 minutes. I understand that in a real emergency that is what I am to do. But the whole point of my complaint is that our Renal training Unit has a duty of care 24/7 to their home patients. That is what they are paid by our government to do. I have rung the home nurse pager thingy on at least one dozen occasions over the past 2 years, particularly in the early days of being home on Nocturnal.

Often it has been for a mistake I have made setting up the machine or a major stuff up on my part or when I was having needling problems. The nurse was able to talk us through the problem and calm us down. It is essential to know that there is someone out there after hours who knows your dialysis prescription and fistula. I wouldn’t have taken on the Freni had I not had this support. Calling an ambulance or going to Emergency is a last resort if I am unwell etc

Admittedly the pager system hasn’t worked a few times, the nurse had forgot to take it or was out of mobile phone range…but that’s another story.
Thankyou for your concern
Cheers
Mel

15

Yes, the phrase "Global village’ is not so far-fetched these days.
Well done Beachy. citizen action at its best!!

16

Hi Folks

Hi Beachy & Bear

I just was wondering if your set up as to units do all have the same basic lay out as to in center and do all offer home dialysis in all forms? And do they stay open 24/7 are they for profit or non ? I’m sorry if you talked on this before. The one area here that I want to see is units mandated to run 24/7 and mandated to have all forms of dialysis open to the person. At least for the for profit units. They got into this to make money and thats fine, but they should be held more accountable to be people they are getting federal money and from insurance. This message board tells of the vast mess this is, ( eg water testing, some units have it in place for home people, but I found it out here ,my unit has not yet talked to me even though I brought it to them)

Bob OBrien

17

The pressure continues. http://www.smh.com.au/news/national/rethink-puts-crucial-nurse-back-on-duty/2007/12/28/1198778703361.htmlArticle in big Sydney paper today!

18

Hi Bob

[QUOTE=bobeleanor;15287]Hi Folks

Hi Beachy & Bear

I just was wondering if your set up as to units do all have the same basic lay out as to in center and do all offer home dialysis in all forms?
And do they stay open 24/7 are they for profit or non ?
Bob OBrien[/QUOTE]

Hi Bob
Most of the renal units in Australia are publically funded and are set up within our major public hospitals(in centre). There are also some Privately funded units within major cities where those with Private health cover can choose to go if they wish. they are all basically sey up the same but I am not sure of any open 24 hours, although I know there are many good medicos working towards setting up Nocturnal units. The major Renal Units also run “satellite” units further afield where some patients do"self care" with nurses on duty. There are also PD clinics in major centres.

To do home training most country patients have to travel (often hundreds of kilometres) to a major Renal Unit as there are only a few home training Units outside of our major cities. My home training Unit is attached to a smallish regional hospital managed by a larger"Area health Service" funded and managed by the government. These units MUST offer 24 hour home nursing phone support , it is mandated and they have a “duty of care” to us.

Cheers

19

There is no requirement in the U.S. that dialysis clinics be open 24/7 and most are not. A few offer nocturnal dialysis and most of them offer it 3 nights a week. In Kansas City, at least one clinic offers nocturnal dialysis Sunday, Tuesday, and Thursday nights. I don’t know if that’s the way it’s done everywhere.

The ESRD regulations require that every dialysis patient in the U.S. be informed of what to do in an emergency. If you’ve not been told this, I’d suggest that you ask. I would hope that emergency information would be in training materials that home patients get when they are in training and that they take home to help address common questions home patients have.

Patients should know how to contact their nurse and/or doctor after hours. This is true for in-center as well as home dialysis patients. In addition, home dialysis patients should be given information on how to contact the company that made their machine/supplies so they can call for technical support 24/7 to troubleshoot machine problems if the nurse/doctor can’t help them. Any question that can wait until normal work hours will give more options for staff to talk with in a dialysis clinic, a doctor’s office, or at the company that made the machine,

Home dialysis patients should be told what to do in an emergency. If life or limb is threatened, they should call 9-1-1 to get immediate help. If the emergency isn’t that urgent they should get someone to take them to the nearest ER.

We used to advise our patients to notify the EMTs that would be reached when you call 9-1-1 that you’re a dialysis patient and where you live so they knew what they might need to deal with if they got a call from one of our patients. You should probably find out if the closest hospital can do dialysis in an emergency and who the nephrologist is who supervises inpatient treatments there. Even if you’re not seen by your nephrologist, any nephrologist will do in an emergency. If the closest hospital doesn’t do dialysis and if transfer is necessary, hospitals can arrange ambulance transport (ground or air depending on the immediacy of the need).

Bottom line…If a patient has a question/concern/emergency and needs help right away, he/she should know who to call and how to call them. If that isn’t happening at your clinic, you might want to talk with your doctor, home training nurse, facility administrator, ESRD Network, and/or state survey agency. No one should have to worry as much as you apparently are about how to handle an emergency as a home patient.

20

[QUOTE=Beth Witten MSW ACSW;15290]
Bottom line…If a patient has a question/concern/emergency and needs help right away, he/she should know who to call and how to call them. If that isn’t happening at your clinic, you might want to talk with your doctor, home training nurse, facility administrator, ESRD Network, and/or state survey agency. No one should have to worry as much as you apparently are about how to handle an emergency as a home patient.[/QUOTE]

Beth
Not sure if you are referring to me or Bob?
Speaking personally, of course if the situation was life threatening I would be off to emergency. If, as is the case now and then , i have a problem with getting onto dialysis because something is not right with my machine or levels, pressures, unusual alarms or a total stuff up with Clexane, Iron, bloods etc then I would not hesitate to ring my on call nurse and as often as not they can quickly solve the issue. This , of course is more common in newly trained patients and it is vital for them to know that those nurses are just a call away. It is pretty lonely out there at times, particularly if you are elderly and isolated. That is what they are there for and that is the service we are told to expect. 24/7.
Cheers