Dialysis chairs

[Rerun]

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.... 

[Sugarlump]

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.

[Rerun]

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.

                   

[jeannea]

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.

[cassandra]

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

[amanda100wilson]

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.

[JW77]

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

[Sugarlump]

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!! 

[amanda100wilson]

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.

[noahvale]

*

[Sugarlump]

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.

[jeannea]

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.

[cassandra]

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!! 
[/quote]

Really keep writing, ringing, etc. did you also email Nxstage UK if they use Nxstage anywhere near you?

Good luck my darling, Cas