I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Sugarlump on August 09, 2014, 07:53:40 AM
-
How comfy are you unit's dialysis chairs and how frequently do they replace or mend them?
I attend a very small unit with 5 chairs!!! which are about 7-8 years old (from when unit first opened) and we generally
sit in same place but last session on Friday, the chairs had been moved about for some reason.
And my chair was broken, you can't raise the foot rest up and down. Sounds a minor point but for short people like me
means you keep slipping down the chair, leaving your spine unsupported and making my shoulder (on fistula arm) ache...
When I asked when it was going to be fixed I got very short shrift... a whenever answer.
But it is uncomfortable. Four and a half hours plus in an uncomfortable chair three times a week is not acceptable.
Especially as it gave me awful backache afterwards.
They don't like it when I moan or complain ... but dialysis is difficult enough without making it worse and with unsympathetic nurses
telling me how privileged I am to have dialysis... and how hard they work and stuff that riles me,,,
Come Monday, if the same chair is at my station I am going to refuse to sit in it.
If they argue with me or get funny, I'm walking out.
I am tired of being treated as if I should see dialysis as a do as your told situation...
I shall walk out and go and see the manager in the Main Unit...
:boxing; :boxing; :boxing;
-
It is only normal to want to be treated like a person, not a slab of meat.
Some staff need to be reminded of that. If they had any common sense they wouldn't need to be reminded. How would 'they' like to be forced to sit in an uncomfortable chair for hours at a time, three times a week, and be treated like a slab of meat. Not at all.
Definitely let management know that their 'system' is not working right. But do try to keep your temper in check, stay calm, rational, but firm, that they need to improve not just the broken chair, but staff attitude.
-
How comfy are you unit's dialysis chairs and how frequently do they replace or mend them?
I attend a very small unit with 5 chairs!!! which are about 7-8 years old (from when unit first opened) and we generally
sit in same place but last session on Friday, the chairs had been moved about for some reason.
And my chair was broken, you can't raise the foot rest up and down. Sounds a minor point but for short people like me
means you keep slipping down the chair, leaving your spine unsupported and making my shoulder (on fistula arm) ache...
When I asked when it was going to be fixed I got very short shrift... a whenever answer.
But it is uncomfortable. Four and a half hours plus in an uncomfortable chair three times a week is not acceptable.
Especially as it gave me awful backache afterwards.
They don't like it when I moan or complain ... but dialysis is difficult enough without making it worse and with unsympathetic nurses
telling me how privileged I am to have dialysis... and how hard they work and stuff that riles me,,,
Come Monday, if the same chair is at my station I am going to refuse to sit in it.
If they argue with me or get funny, I'm walking out.
I am tired of being treated as if I should see dialysis as a do as your told situation...
I shall walk out and go and see the manager in the Main Unit...
:boxing; :boxing; :boxing;
Ask them if they would like the "privilage" of needing dialysis. They are acting like they are doing you a favor by letting you "enjoy " the fine benefits of dialysis. What crap. What a crappy attitude they have. Health care providers with an attitude like that should be fired.
Dont put up with it. You deserve at least a comfortable chair for 4 hours of "privilaged" dialysis.
-
Definitely go and demand changes Sugar
Strength, and love, Cas
-
So very sorry to hear about this. Their attitudes are unacceptable! So is a broken chair! That is NOT safe! Maybe try showing up at the same time another patient does and then ask the other patient out loud in-front of the staff if they wouldn't mind sitting in the broken chair because it hurts you too much -and then wait for the other patient's reaction to that! Maybe if more than just one of you asked (at the same time) for a better and SAFER chair and stood united with this request, their attitude will change and they'll get a new chair right away. Or....bring it up with your Neph and tell them you are not only in discomfort but fear that the broken chair is UNSAFE.
-
I agree...the broken chair is unsafe. What if you would need to be put flat because your blood pressure was dropping? I would refuse the chair and if they refused to fix it, I would work my way up the chain, including the ESRD network.
-
As Cattlekid, a broken chair is not a safe chair.
-
*
-
I agree...the broken chair is unsafe. What if you would need to be put flat because your blood pressure was dropping? I would refuse the chair and if they refused to fix it, I would work my way up the chain, including the ESRD network.
She's in the UK, therefore under the NHS. Not easy working "up the ladder" under socialized medicine.
Good point, noahvale. Perhaps that's also why they told her getting dialysis is a "privilege". :(
-
Ask them if they would like the "privilage" of needing dialysis.
It is not a privilege to need dialysis (more like a curse), but it is a privilege to be able to get dialysis when you need it.
Here in the US, pretty much everyone who needs dialysis gets it (including illegal aliens). In many parts of the world dialysis is either unavailable; limited to twice a week; limited only to people who are transplant candidates; or available only to those who can pay for it. Just try getting dialysis if you are a peasant in some third world shithole.
The cost of dialysis is considerable, and having access to it even if you cannot afford it, without "rationing" with respect to age or transplant candidacy status is indeed a privilege.
-
Personally I don't think it is a privilege but a necessary evil, something I have to endure...
We may get dialysis in the UK free, but at where they choose and when they choose and a barest minimum of 3 sessions a week.
That IS not a privilege that's like saying I am lucky to have kidney failure!!!!!
That same nurse told me I did have a choice (when I said nobody chooses to have dialysis) that I could stay at home and die!!!
Nurses are there to facilitate our dialysis and support us in a nursy manner!
That same nurse today, forgot to do my tapes, forgot to put seaweed on before gauze at end, put the wrong set of lines on someone's else's machine and
"lost" someone's epo in her pocket for about 10 minutes and simply "forgot" to give me mine.
That's the NHS standard of care over here!
(And your peasants from 3rd World Countries) quite often come over here to get free treatment!
:rant;
-
That same nurse today, forgot to do my tapes, forgot to put seaweed on before gauze at end, put the wrong set of lines on someone's else's machine
Please do you mind explaining what that is?
-
*
-
That same nurse today, forgot to do my tapes, forgot to put seaweed on before gauze at end, put the wrong set of lines on someone's else's machine
Please do you mind explaining what that is?
They prepare tapes for sticking on the needles to keep them in place in your arm whilst on dialysis and stick them to edge of patient table ready, within their reach!
We have Calstat (seaweed stuff) underneath gauze when holding arm to stop bleeding at end of dialysis (it is supposed to stop bleeding quicker!)
And lines are the line set on front of dialysis machine that take blood in and out for dialysis, they have different sets for single pump machines and double pump machines
-
*
-
I have been trying to get home haemo for 2 years.
My partner always did the tapes and the pack for coming off whilst I weighed myself and calculated amount to remove etc but then the nurses decided they didn't want him in the room when I am put on and off. He has trained up ready for home maemo except needling.
They have usually prepared it by time I arrive anyway.
Our nurses are quite uppity about patient involvement and don't like us to programme machine or cancel alarm...
(The seaweed impregnated cotton wool is generally used in all UK dialysis centres I think)
I inject myself with epo at end of session but because they don't like to take it out of the fridge til I have finished actual dialysis, when I am holding arm and stuff I am not at my sharpest! I get very sleepy by the end of dialysis. I wanted to take injections home but not allowed to date. So much easier to do it naked and off machine...
-
*
-
Unless you'd been in my unit (a small satellite 5 chair one) you wouldn't understand the grief I get for trying to be in control of my own dialysis, and not to be treated like
a 6 year old. And yes I have filed 2 complaints to Main Unit manager which achieved very little.
i just want out now.
We have no choice in the uk where we dialyse so home haemo is the only solution but they are so so cautious who they allow home!!! red tape and obstacles by the dozen!
I desperately want an NX stage machine like Cassie's but my health authority is still considering buying them!
-
That IS not a privilege that's like saying I am lucky to have kidney failure!!!!!
Nope. I would say that MD who got Ebola was privileged to get the experimental medicine, even though Ebola was a curse from hell.
-
The dialysis in the UK or anywhere in the world is not free. Socialized medicine or group or Medicare,insurance or self-pay, whatever....either the tax payers pay for it, insurance premiums, whoever, pay for it. When we get medical care, it is paid for one way or the other. And to say that the attitude is that you have to endure whatever is slung your way because it is "free" is a lot of bullshit. There is nothing free in this world!
Don't put yourself in danger. Refuse to sit in any chair that is not in good repair.
-
And to say that the attitude is that you have to endure whatever is slung your way because it is "free" is a lot of bullshit. There is nothing free in this world!
Bingo!!! Furthermore, I expect that most patients have paid for their own dialysis - either through insurance premiums, or (after 30 months or age) through a lifetime of paying medicare taxes. Those who never paid (for example, crossed the border and demanded free dialysis) are another matter, but do not represent the typical dialysis patient.
-
Hi Sugar did you ever find out about Nxstage in Cambridge?
-
Prime timer, you are talking complete bulls*** about treatment in the UK. I have experience renal healthcare on both sides of the pond. I never had one person that a I dealt with referring to any for of NHS healthcare as a privilege, , and it sounds as if this member of staff has an attitude problem just as staff do in units in the US. People pay for their healthcare in the IK via their taxes and national insurance payments. We just don't pay it at point of service as it is done in the US. Your comment sounds like it comes from someone who has swallowed the right-wing clap-trap about the British healthcare system, whilst they fail to mention the bits that don't fit their arguement. I do not wish to turn this thread into a political discussion, but your comment really touched a nerve.
-
*
-
Prime timer, you are talking complete bulls*** about treatment in the UK. I have experience renal healthcare on both sides of the pond. I never had one person that a I dealt with referring to any for of NHS healthcare as a privilege, , and it sounds as if this member of staff has an attitude problem just as staff do in units in the US. People pay for their healthcare in the IK via their taxes and national insurance payments. We just don't pay it at point of service as it is done in the US. Your comment sounds like it comes from someone who has swallowed the right-wing clap-trap about the British healthcare system, whilst they fail to mention the bits that don't fit their arguement. I do not wish to turn this thread into a political discussion, but your comment really touched a nerve.
I wasn't trying to politicize this but, was trying to point out as to maybe why that nurse made that rude comment about dialysis being a privilege. I don't think the nurse should have said that to sugarlump and I certainly do not think dialysis is a privilege but maybe that nurse thinks it is under their healthcare system over there. Someone paid for it, nothing is for free but that's beside the point and perhaps belongs under another topic thread. Anyways, perhaps the nurse herself is disgruntled over some things but still, that was no excuse to speak to a patient like that. I hope sugarlump will get to sit in a SAFE AND COMFORTABLE chair.
-
Back to the chair: We got new ones and once you lay back you can't get back up. Talk about a safety issue!! The Tech has to come sit you up. I hate asking them to walk over to sit me up. I've complained but they are NEW..... I say... take them back they are awful. I too am short and cannot make them work. I've asked the nurses and techs to sit in them and they can't get them up either. Which, makes them more helpful and understanding. We can only put up "so much" fight and refusal... we die in about 10 days without dialysis. The thing that gets them moving here is to threaten to call the Health Department!
Medicare is socialized .... Holy Crap if these centers had their way and received the $60K a month? Well, only a few could dialyze. I don't think I'd last very long in the UK....
-
The chair ... was re-swapped back because I think they knew I wasn't going to put up with it. But that would have meant NOT having dialysis...
Today we had 2 new patients and I had to wait 45 minutes before they put me on. So they cut my time down (against my wishes)...
Cheers (now half a kilo over) ::)
Trying to make a complaint or insist on your rights within our NHS can be very difficult to achieve anything... I emailed the Doctor responsible for home haemo this week to
remind him I am still waiting. And got a snotty phonecall back from his secretary saying please do not email him direct. If I need anything I should ask my nurse...
the one who thinks dialysis is both a choice and a privilege...
Sometimes (as Rerun says we die in 10 days without dialysis) I have to fight the urge to walk away from it all ...
Lack of support and being made to feel less than important in the scheme of things really doesn't help.
-
Sugar I'm so sorry you have to put up with that crap. Have you tried bribes?? A dozen cookies goes a long way. I'm not kidding. If I bring them a pizza they get really nice. Sucks to stoop that low but it works.
:flower;
-
I don't know how old the chairs in my unit were. They seemed nice enough. I was never able to sit up on my own. But I chalked it up to being too weak after being sick. I switched to PD before I got stronger. I am short and maybe I never could have sat up on my own.
-
Cambridge does have Nxstage (according to www) Why don't you ring them, and ask if they know of any closer Nxstage using hosps, or if you can train with them?
If they moan about your Local Authority try to find out who you have to write to, and explain all your probs etc (not to the reception people)
Good luck, and don't just give up
Love,Cas
-
Nosh ale, I am British, and was also a registered nurse over there, so you see, I know the British system very well. The nurse was wrong to say what she did, but I very much doubt that that was how it was meant. People do not think f healthcare there as a privilege, but as a right, and Have never personally encountered one person over there who even gives a thought that it would be a privilege, because cost is rarely considered at the clinical level. Socialized care is the British system, and this has worked very well since 1948! It is taken for granted that this is the way it is and most, if not all those working now, have never known the health system in another way. It is simply not considered a privilege. It isn't perfect, but at least the NxStage machine is approved for nocturnal use, and the new Baxter hemo machine has gig it's CE approval for use. I wonder how many more years the FDA will take off the same approvals. And, yes, there is plenty of right-wing propaganda over here that misrepresents our system. May not be relevant to a chronic illness, but there is fast healthcare in the UK. It is called private medicine paid for by private insurance. So actually you have the choice over there for very much the same healthcare over there if you wish. It is simply that most people do not, as the majority of people feel entitled to get it for 'free' through the NHS.
-
Without getting to involved I might point out that rather large cuts are being made in the UK for funding for renal care.
Unfortunately, like the welfare reform, no renal representative body has been fully consulted.
You've got till midnight tonight to read through all the complicated bumf and contact your MP.
http://kidney.org.uk/home/news-2/revision-of-the-health-service-tariff-structures/
@Sugarlump. Have you considered getting the NKF advocacy officer for your area involved. I know smaller outlying units can sometimes be a bit behind, but what your saying sounds ridiculous. Not keen on selfcaring patients? Or partners being involved?
If they are trying to fob you off with the 'oh you've got to go through the complaints procedure to make a difference its time to bypass that and go to the top to prod buttock.' At the end of they day, they work for you, you keep them in a job, and sometimes you've got to be the Top Dog, that manages the problematic employees.:)
As kidney patients we have to manage ourselves. And a rather large team of people on and off, to get the care we need.
Oh and finishing on the topic of broken dialysis chairs, they are NOT comfortable, and usually, oh they cost a lot you know, is the excuse.
Good luck x
-
Cambridge does have Nxstage (according to www) Why don't you ring them, and ask if they know of any closer Nxstage using hosps, or if you can train with them?
If they moan about your Local Authority try to find out who you have to write to, and explain all your probs etc (not to the reception people)
Good luck, and don't just give up
Love,Cas
I wrote them Cassie and asked for training etc on NX stage from them. No reply.
Feels like I am banging my head against a brickwall! Perhaps I will have to move house!! :boxing;
-
Sugar, keep up writing. A squeaky wheel and all that, and get your nephrologist involved. By the away,a I do agree that the nuse was well out of order for her comment. If the comment really annoyed you, I would go back to her and ask her exactly each at she meant by that comment, and why.
-
*
-
When my last transplant started to fail due to antibody rejection, my nephrologist told me if we could get the new drug called Eculizumab, I might have a fighting chance to save it
He applied to the area NHS bosses but didn't get approval. Nice still have not approved it for general use in organ transplant failure, they look at it case by case, that's a no then.
I understand it is a very costly drug and can cost thousands of pounds but weigh that up against cost of hospitalisation and dialysis... long term it would still be cheaper.
-
There's a lot of problem with long term/short term cost. I see it with the new Hepatitis C drugs. The insurance companies won't cover them because treatment is around $100,000. Then again how much does a liver transplant cost plus before and after care. Frustrating.
-
I wrote them Cassie and asked for training etc on NX stage from them. No reply.
Feels like I am banging my head against a brickwall! Perhaps I will have to move house!! :boxing;
[/quote]
Really keep writing, ringing, etc. did you also email Nxstage UK if they use Nxstage anywhere near you?
Good luck my darling, Cas