Is it just the U.K.?

[celtic warrior]

As some of you know, my Wifes ES RF was brought on by Goodpastures.  After a course of Cyclophosphamide and Prednisolone plus Plasmapherisis, they cleared the antibodies from her blood.
Now, it appears they have not been checking her blood quite as often as they should, as the damn thing is back. Anything below 15 is clear, and guess what? her last results (last Sunday) read 225 ! that is 15 times over normal. On our second visit to the centre after this was discovered (today) we asked what was being done about it. Apparently NOTHING !! as the specialist has not got back to them yet.

[stauffenberg]

I have been a patient in the medical systems of America, Austria, Germany, Canada, and England, and the English system has peculiar problems I have not encountered elsewhere.  It seems that because the NHS is so drastically underfunded (the UK spends 7% of its GNP on healthcare, while Canada spends 10%, and the US spends 15%), healthcare workers have become discouraged and inefficient, so many things are left unchecked, unattended, and negligently handled as a matter of course in the UK, and people just shrug when their carelessness is pointed out, while elsewhere in the world anyone being so sloppy would be fired or charged with criminal negligence.

Thus for example when I was a new renal patient in the Hammersmith Hospital, because I had initially been classified as a case of 'acute renal failure,' for which EPO is not given, I was never given any EPO and no one even bothered to check that my red blood cell count was declining, no matter how exhausted I became or how much I complained.  It was only when I reached the dangerously low value of 50 and could no longer raise my head from the pillow that someone finally noticed and gave me a blood transfusion.  I could cite a hundred other examples of NHS carelessness, but perhaps things are better for English patients with private insurance.

[stauffenberg]

I have been a patient in the medical systems of America, Austria, Germany, Canada, and England, and the English system has peculiar problems I have not encountered elsewhere.  It seems that because the NHS is so drastically underfunded (the UK spends 7% of its GNP on healthcare, while Canada spends 10%, and the US spends 15%), healthcare workers have become discouraged and inefficient, so many things are left unchecked, unattended, and negligently handled as a matter of course in the UK, and people just shrug when their carelessness is pointed out, while elsewhere in the world anyone being so sloppy would be fired or charged with criminal negligence.

Thus for example when I was a new renal patient in the Hammersmith Hospital, because I had initially been classified as a case of 'acute renal failure,' for which EPO is not given, I was never given any EPO and no one even bothered to check that my red blood cell count was declining, no matter how exhausted I became or how much I complained.  It was only when I reached the dangerously low value of 50 and could no longer raise my head from the pillow that someone finally noticed and gave me a blood transfusion.  I could cite a hundred other examples of NHS carelessness, but perhaps things are better for English patients with private insurance.

[KICKSTART]

Sorry Stauff but im british and cant understand what you are saying about not being given any 'epo' or 'epo' is not given , because it is ..well i was given it . I really cant call the NHS considering its free and reading of other people and the problems they have paying for medical treatment. I have always been treated fairly and have got the treatment i needed , although one thing you have to watch for is a cheaper version of a drug being used that may not be as suitable , but this usually and easily gets changed when pointed out. I have always been seen when ive needed to be , so cant really say its poor service .. i think the worst thing i come across is the waiting times at the hospitals for treatment or appts and like i said it all free !!!

[celtic warrior]

What is REALLY annoying is that the first time Maria had high levels of these Antibodies it very near killed her. At the time we were told that Goodpastures Syndrome caused these Antibodies.
Now that these same antibodies are on the rise again they are tryin to tell us there is nothing wrong. WHY will they never give you a straight answer?

[KICKSTART]

Ah straight answers ..now thats another thing. I find every time i got to clinic and see a different doctor , i get told a different story or get told to 'try' something else , but i dont think thats just related to the UK !!!

[stauffenberg]

Kickstart, as you will notice from my message, I said that I was not given EPO because I was initially classified as an acute case of renal failure, not as a chronic case, and no one in the hospital bothered to notice that I needed EPO as the case gradually became chronic.  I DID NOT SAY that patients in general don't receive EPO in England: I was describing my own case.

I lived in England for 13 years and found everything run in an extremely inefficient, careless way.  My present next-door-neighbor is English and describes the UK as "a country dedicated to making its citizens as uncomfortable as possible."  While in every other country they put on extra train service at holidays, in England they reduce the train service at holidays.  In an English hospital the nursing staff is so overwhelmed, if you don't have a relative there to help you, you might never get a glass of water or your food tray if you can't get out of bed yourself.  The doctors are so careless they don't even bother to wash their hands between patients.  The blood samples at the Hammersmith Hospital were placed on a shelf right above a radiator waiting to be put into the dumb waiter, and so they always arrived at the lab baked and clotted so they could not be used.  This had been going on for decades and somehow no one ever bothered to fix it.  The hallways were freezing cold because no one could find where they had stored the long poles that were needed to shut the tops of the high windows, and this problem as well went on for decades.  I could go on and on, but the general picture is clear: there is simply something profoundly wrong with the way English institutions are organized.

[Sluff]

Welcome to ihatedialysis.com Celtic,

There is a lot of information here for you to read, you will be reading for awhile because the threads here are practically endless. I hope you learn or find whatever you need. If you need help just ask and someone will help you out.

Feel free to ask questions and post as often as you like.

Hope to chat with you soon.

Sluff/ Admin

[Ken Shelmerdine]

Celtic Warrior I'm sorry to hear that your wife has been so shabbily treated. Have you spoken to your GP about this, surely they can't just do nothing. You need to get this resolved, be insistant that something is done and don't stop pestering them until it is.

In answer to Stauffenberg I have to say that that you have described the NHS in the way that it was several years ago. Your experience would be far different now. Although there are instances of the type of shortcomings you have described, generally speaking the NHS is far more accountable than it was then and far more professional. There is a hiegene policy which is rigidly adhered to and lapses in patient care occur a lot less frequently than previously. Some failings still exist most notably in general ward care due to under staffing and the NHS in that area is chronically underfunded.

I myself have experienced good and bad. Firstly the renal network covering dialysis,clinics, outpatient care and support has been outstanding from the word go. Thats the good bit. The bad bit is the lack of general care I received on the ward when I was hospitalized to have my PD catheter fitted. Oh and by the way I've just been cured of prostate cancer in 8 weeks by arguably the best cancer institute in the world. The Christie Hospital, again, NHS.

[celtic warrior]

Hello ken  WOW!!!  REALLY good news about your Prostate Cancer      You really wont remember me, but do you remember that complete stranger phoning you one Sunday morning, when you were after a telephone number  in  Vegas???     You got it!!

[celtic warrior]

ooooopppppsss  silly me ,,,,what I MEANT to say was  I dont know if you remember,  BUT

[celtic warrior]

Dosent sound any better does it?      Oh well, you know what I mean

[kevno]

I have been a renal patient now for over 30 years in the UK. I did see the standards of care go down. I have had a dirty dressing left a the side of my bed for over six hours! Been overdosed, which as put me in ICU three times. Many more thing have happeded but that is in the past now.

But over the last two years the changes on the unit have been unbelievable. Every nurse had as the learn again the basics of care. Right down to washing there hands. As two years ago you could get on the machine in ten minutes. It can now take 30 - 45 minutes depending on which nurse is putting you on. The nurses can not even line the manchine until you are ready to go on. All the renal patients on the unit are swab once every three months to check to see if there are any infections. If any so called (Super Bugs) are found the patient is put in a isolation room unit clear. On our unit we have five.

Same for the doctors. They must wash there hands before touching you. Plus if you are not sure they have washed they hands. There are posters up to say. you can ask them to clean there hands. Which I have now done a few time.

[Ken Shelmerdine]

Hello ken  WOW!!!  REALLY good news about your Prostate Cancer      You really wont remember me, but do you remember that complete stranger phoning you one Sunday morning, when you were after a telephone number  in  Vegas???     You got it!!

Yes I do remember and thank you for your help. I got through eventually and spoke to Goofinina. She has recently passed away so I'm so glad to have spoken to her that once and it was thanks to your help.