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Author Topic: Fed up !  (Read 4335 times)
KICKSTART
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« on: February 01, 2010, 11:25:30 AM »

Just that , plain and simple ! Been back for eye tests results today ..negative , nothing , had even more tests while i was there , still nothing . So now next step refering me to Neurology ..great ! and still those so called nurses in the unit dont take my pain seriously , in fact they just ignore me now ! Dialysis wont be the death of me , the hemo unit will !!!
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
paris
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« Reply #1 on: February 01, 2010, 02:29:48 PM »

This is awful.  I am so sorry Kickstart.  What an absolute mess.  I hate that you continue to have so much pain and no one is helping.   :cuddle;
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jbeany
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« Reply #2 on: February 01, 2010, 03:01:12 PM »

Hellfire!  Hope they figure something out soon!
 :cuddle;
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Darthvadar
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« Reply #3 on: February 01, 2010, 03:23:14 PM »

Hope things improve for you, KS....

Sooner or later they have to get to the bottom of the issue...

As regards the particular staff member, I'd say that the judge would take a plea of extreme provocation!!!... :rofl;

Love...

Darth....
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
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« Reply #4 on: February 01, 2010, 06:05:52 PM »

Oh KS I'm so sorry to hear that!  You have had such a terrible time!  I hope you can find someone who can figure out what's going on.   :Kit n Stik; Here, use this on the nurses a few times and see how they feel!
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Caregiver to husband, Lou, diagnosed 2/2008
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10/2009 - Started NxStage training
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billybags
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« Reply #5 on: February 02, 2010, 11:41:33 AM »

Well I don't know what to say, it seems like they are piss**g you about alot again. Will you have long to wait for a neurology clinic appointment? Check this site outhttp://www.neurologyclinic.co.uk/frames.htm quite interesting. Are you not picking up the e-mails I've sent you?







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kristina
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« Reply #6 on: February 02, 2010, 02:28:01 PM »


May I  just ask a question please (and this could be a general question as well...):
KICKSTART, are you the only NHS-patient who has been singled out and treated badly
or are there other NHS-patients who are similarly treated very badly
whilst there is another group of NHS-patients who are treated favourable?

I am asking because that is my problem with NHS-doctors:
NHS-doctors were very kind and very caring to one group of NHS-patients
whilst they treat - at the same time - another group of NHS-patients very badly...

Thanks for your answer, Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
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Poppylicious
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« Reply #7 on: February 03, 2010, 07:10:13 AM »

Hey Kickie (do you mind if I call you Kickie?  I always call you Kickie in my head!) ... I really feel for you.  When Blokey gets to dialysis and finds the Nasty Nurse on duty he always sends me text telling me so that I can join him in his misery!  It seems a tad cruel that they now just ignore you.  Tsk.  I really hope that they find out precisely what the issue is, and soon. 

*hugs*
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- wife of kidney recepient (10/2011) -
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« Reply #8 on: February 03, 2010, 07:18:12 AM »

I hope you can get some relief soon.

               :flower;
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fc2821
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« Reply #9 on: February 03, 2010, 08:35:50 AM »

       Sorry you are having this trouble.  Hope things get better for you soon.    :grouphug; :grouphug;
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KICKSTART
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« Reply #10 on: February 03, 2010, 01:13:17 PM »


May I  just ask a question please (and this could be a general question as well...):
KICKSTART, are you the only NHS-patient who has been singled out and treated badly
or are there other NHS-patients who are similarly treated very badly
whilst there is another group of NHS-patients who are treated favourable?

I am asking because that is my problem with NHS-doctors:
NHS-doctors were very kind and very caring to one group of NHS-patients
whilst they treat - at the same time - another group of NHS-patients very badly...

Thanks for your answer, Kristina.

Sorry Kristina , i cant speak for other patients. I just know i ask too many questions ! There are a few nurses on my unit that dont like me , but thats because i want to know whats going on , i want answers , i make suggestions and tell them if i dont agree. Im not one of the many that go in there , climb in the chair ,and  fall asleep till im done!
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Sluff
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« Reply #11 on: February 03, 2010, 01:59:21 PM »

Give em hell KS you are your own best advocate. Hope you get to the bottom of this soon.
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kristina
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« Reply #12 on: February 03, 2010, 02:37:59 PM »

Quote
Sorry Kristina , i cant speak for other patients. I just know i ask too many questions ! There are a few nurses on my unit that dont like me , but thats because i want to know whats going on , i want answers , i make suggestions and tell them if i dont agree. Im not one of the many that go in there , climb in the chair ,and  fall asleep till im done!

Thanks for your answer. I have a similar problem. I only ever went to NHS-doctors when I felt really sick,
but they did not check-up on my symptoms or my bloodpressure or my kidney function
& so I suffered cerebral haemorrhages (due to untreated high bloodpresssure),
chronic osteomyelitis & a stroke (again due to untreated high bloodpressure)
& now ESRF (kidney function ~10%).
Apart from asking about the strange behaviour of the many NHS-doctors I saw,
I asked questions about why this was happening to me, what was wrong.
No answer, no medical examination, no interest, no diagnosis.
My diagnosis of Lupus/SLE/MCTD was only made in another country
on the Continent in 1995 & 2003.
I now wonder what is the NHS-health-care really all about?
What is going wrong?
Heaven help me if I need dialysis...

Edited: Fixed quote error - paris, Moderator
 

 
« Last Edit: February 03, 2010, 03:19:44 PM by paris » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
RichardMEL
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« Reply #13 on: February 04, 2010, 08:32:58 PM »

I know this won't help much but a nurse who used to work in my unit returned from 2 years working in Scotland and London in Dialysis units. He had a great time, but when I asked him about the situation with NHS and treatment of patients and how it compared to here he said basically it was dreadful and that due to the nature of everything being free for the consumer, the cost strains on the system were incredible and it lead to poor treatment for most because they try to do too much with too little and that sort of thing. I think he was happy to be back here.

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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Stoday
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« Reply #14 on: February 04, 2010, 09:01:56 PM »

I think it's a bit unfair to draw conclusions from just two hospitals.

I have a choice of going to Ipswich hospital, 5 miles away, or to Colchester, 15 miles. I have spoken to a patient who has attended both, and he says Colchester is disorganised and poor. Ipswich on the other hand is far better and he had no complaints even though it was further from his home.

From what I read in this forum, much the same variation applies to the USA.
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Diagnosed stage 3 CKD May 2003
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Heart Attacks June 2005; October 2010; July 2011
kristina
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« Reply #15 on: February 05, 2010, 12:50:01 AM »

I know this won't help much but a nurse who used to work in my unit returned from 2 years working in Scotland and London in Dialysis units. He had a great time, but when I asked him about the situation with NHS and treatment of patients and how it compared to here he said basically it was dreadful and that due to the nature of everything being free for the consumer, the cost strains on the system were incredible and it lead to poor treatment for most because they try to do too much with too little and that sort of thing. I think he was happy to be back here.

Thanks for your honesty, Richard, it is very much appreciated.
Kind regards from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
billybags
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« Reply #16 on: February 05, 2010, 03:44:40 AM »

We are lucky in Nottingham we have always had good re pore with our nephs and nurses in both units. I think once they realise you are not a pushover and that you take an interest in what is happening and ask a lot of questions they are ok. Our nurse that comes has got used to me now asking questions, it took her a while but she is there for us and what she doesn't know she finds out for me. Our nephs have a weekly meeting with the dialysis nurses and heart doctors and sort things out. They also let you know what they have discussed if it is relevant to you. So at the moment we are happy. We have a 24 hour help line to the units and ward which is great if you have a problem. After being in a hospital in Greece I would never call the NHS, but we are lucky in Nottingham we have 2 really good hospitals. That is owe opinion, alot might say different.
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cariad
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« Reply #17 on: February 05, 2010, 10:14:24 AM »

I think it's a bit unfair to draw conclusions from just two hospitals.

I have a choice of going to Ipswich hospital, 5 miles away, or to Colchester, 15 miles. I have spoken to a patient who has attended both, and he says Colchester is disorganised and poor. Ipswich on the other hand is far better and he had no complaints even though it was further from his home.

From what I read in this forum, much the same variation applies to the USA.

Oh, yes! America has some of the best hospitals in the world, and also hospitals that I dare any Brit to go to and then turn around and complain about the NHS. In LA, we had a hospital shut down by the federal government it was so damn appalling, and I believe New York City was the site of a woman who died after screaming in agony in the ER waiting room for a full day.

It's sad, but I believe you can find horrific care in any of the countries that are normally mentioned on this site, but it does not mean you necessarily write off the whole nation.
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kristina
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« Reply #18 on: February 05, 2010, 11:56:17 AM »

I think it's a bit unfair to draw conclusions from just two hospitals.

I have a choice of going to Ipswich hospital, 5 miles away, or to Colchester, 15 miles. I have spoken to a patient who has attended both, and he says Colchester is disorganised and poor. Ipswich on the other hand is far better and he had no complaints even though it was further from his home.

From what I read in this forum, much the same variation applies to the USA.

Oh, yes! America has some of the best hospitals in the world, and also hospitals that I dare any Brit to go to and then turn around and complain about the NHS. In LA, we had a hospital shut down by the federal government it was so damn appalling, and I believe New York City was the site of a woman who died after screaming in agony in the ER waiting room for a full day.

It's sad, but I believe you can find horrific care in any of the countries that are normally mentioned on this site, but it does not mean you necessarily write off the whole nation.

I don't think the problem is connected to any Nation,
but rather to the power of International Pharmaceutical Industries
getting hold of very vulnerable health-systems like the NHS for example.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
KICKSTART
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« Reply #19 on: February 05, 2010, 01:25:55 PM »

I dont know about good or bad hospitals, but i think alot of the issue is TIME ! I only see my neph once every 3 months and all through my appt he keeps looking at his watch! Once he has said what he wants to say , he wants me out the door! Its the same with the nurses to a certain degree (not in all cases) they dont interact with us , but get behind the nurses station and they discuss tv/holidays/food. and i think it would be nice if they came and chatted to us , not dialysis related , just a chat!  I think the NHS or at least our hospital has all the equipment it needs , certainly our unit has the latest machines and you get the meds you need , not the cheapest option. But it still feels like a cattle market and if you attend any sort of clinic ..gawd the waiting time ! I had to go last week , my appt was for 1.15pm and i got in at 4.05 ! then i had to wait some more and it was 6pm when i got home !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
monrein
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« Reply #20 on: February 07, 2010, 03:04:12 PM »

Kickstart, I know that you've been told that you can't do home hemo since you have no "assistant" at home.  Is it possible to go to a self-care clinic where you'd do everything yourself, (they will cannulate people here at self-care but I always preferred doing that myself too) but have fewer staff to patient ratios?  Kind of a compromise between home and in center.  Saves money for the system since less staff required, machines are used for more than one patient so again cost-effective, but best of all, patients like me who want to be in charge of themselves get the chance to do so.   Win win win in my opinion.  Does this option exist at all where you are?
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
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