How do nephrologists treat kidney patients?

[kristina]

I am wondering how kidney patients are treated by nephrologists? Are there any rules of conduct?
 
The main interest of all NHS-nephrologists I saw over the past 30 years, was, to finish a consultation a.s.a.p.
There was no time to answer my questions during the few minutes I was given.

I had to wait for many hours to see them & the effects of ultraviolet hospital-lights made me very unwell.
NHS-nephrologists took no time to diagnose my symptoms, no time to control/take my blood pressure,
no time to examine my symptoms & no time to take a blood test to diagnose & no time to find answers for my symptoms.

After my first kidney failure with coma in 1971 (on the Continent),
it took a long time for me to be strong enough for my first and only kidney-biopsy
which diagnosed chronic proliferative glomerulonephritis with hypertension
(I still have the medical report of the biopsy). There were complications.
My kidney was bleeding & I was warned by a Professor of Medicine to avoid another biopsy.
This Professor advised me to eat a vegetarian diet & to avoid Alcohol & pain killers.

NHS-nephrologists I saw in London made fun of what I was told by the Professor
& they demanded a new kidney-biopsy. I refused & was left without NHS-medical care & I was given hell for my refusal.

NHS-nephrologists prescribed me lots of different anti-hypertensives,
but they were not interested whether my blood-pressure was really controlled.
They did not help me medically and that is why I suffered cerebral haemorrhages & stroke
due to uncontrolled high blood pressure, chronic osteomyelitis, constant ill-health whilst under their medical care.
They were unable to diagnose my Lupus/SLE/MCTD.

There were also different “angles”:
 
One NHS-nephrologist tried to force me to undress to “check up my kidneys”. 
He became violent & abusive when I refused & I made my escape just in time.
Years later I discovered that he stalked my whereabouts through my NHS-medical-file.
(I discovered this whilst I studied my NHS-file after receiving copies
from the office of the NHS-Health-Ombudsman who found I had nothing to complain about).

Another NHS-nephrologist (also at the UCH) suggested I imagined my symptoms.
He also told me how lonely he was. Had he taken a professional medical interest
my Lupus/SLE/MCTD might have been diagnosed & I might have had a chance
to avoid my medical disasters. He did also not diagnose that I suffered chronic osteomyelitis & I nearly lost my leg.
Was he deliberately unhelpful because I refused to become privately involved with him?

Another NHS-nephrologist, a NHS-Professor, suggested that my symptoms did not exist at all.
When my Lupus/SLE/MCTD was diagnosed on the Continent many years later,
I realized that I always presented typical Lupus-flare-up-symptoms & had I had medical attention at the time,
my oncoming medical catastrophies could have been easily prevented.

Another NHS-nephrologist studied arrogantly his watch & did not listen to any of my pleadings for a diagnosis.
He did not bother about my constant ill-health.

Another NHS-nephrologist in St. Thomas Hospital was unable to control my blood pressure going out of control
as an allergic reaction to the anti-hypertensives he prescribed. Had he thought about my symptoms
& communicated with doctors next door I might have had a chance to be diagnosed there.
 
Another NHS-nephrologist I saw in August 2006 startled me
by being dressed-up in black leather trousers, black leather jacket & black leather boots.
He offered no medical help, no training/options about dialysis/transplant or Lupus/SLE-MCTD.
He startled me further by stating my kidneys would stop functioning in January 2007.
Without having medical evidence he stated my ESRF was not connected to my Lupus/SLE/MCTD.

The last NHS-nephrologist I saw two years ago startled me. He did not answer my questions
& informed me my kidneys “might stop functioning” by January/February 2009. 
No medical information about dialysis/transplant was offered.
Adding insult to injury, he let me wait outside the Hospital (near Cambridge)
because no room with natural light within the hospital could be found to accommodate my photosensitivity.
Being very poorly in ESRF I was forced to wait outside the hospital in the cold weather for a long time
& was informed on my mobile when he finally could see me.
At one point I told him about my failing eye-sight and he referred me to a NHS-eye-specialist.
The eye-specialist examined me for his own medical research only.
He gave no explanation, no diagnosis, no comment, nothing.
I had travelled all the way from London, getting up at 4 o’clock in the morning to be there in time for the appointment,
travelling all the way to accommodate the eye-specialists medical research and nothing else.
I felt never more insulted in all my life. The NHS-nephrologist at Addenbrookes also knew I have no NHS-GP to go to
& no NHS-GP would let me register with them, but to keep up the NHS-charade,
he wrote letters to a NHS-GP I had not even seen for many years
& sarcastically he sent me copies of these letters.

I have to pay for my blood tests as & when I can afford it.
My kidneys only work 10% now. I am without NHS-medical-care
& I have no NHS-GP/nephrologist/rheumatologist to go to in my ESRF.
 
Heaven help me if I need dialysis.
I have applied to other specialists in other countries for help but have not been successful yet.

What experiences do you have? Can one really expect health care from nephrologists?
 
Thanks, Kristina.
 

[RichardMEL]

I have seen two nephs in my history with kidney disease (not strictly true as I've been involved with others for minor things - like registrars - and another one as part of a study they were doing). The first one, we'll call him Doctor H. He came highly recommended as an excellent neph. This was right after I'd been diagnosed with protein in the urine (which I didn't think was a big deal). All I'd been told is go see this specialist - he's highly regarded. Luckily my mum, who had been a chief social worker and knew more about this stuff than I did, came with me. Well we walked into the guy's office, sat down and he basically said "You have TWO YEARS." that was it. No sugar coating here!! I never did find out if he meant he thought I had two years to live, or two years till Dialysis. Well let's just say I saw him for exactly one session. My mum agreed that this guy behaved appalingly and treated me poorly. I mean yes, they have to tell you all likely outcomes to cover themselves, but this guy seemed to have no idea of the impact he was having. I went from having protein in my urine to potentially having two years left? This guy didn't really explain anything.

Well because my mum had worked in hospitals she happened to know another neph - someone she knew personally from work and knew he was great - Dr. T. He has been a gentleman from the word go. Don't get me wrong - he didn't hide anything from me - he was very upfront with what was going on and the chances of whatever.. but he also treated me like an adult, explained everything and had a warm and compassionate "bedside" manner. I've been with him for the last 17 years (I fear for when he retires, but that's life).

Now Doc H was a private specialist. Doc T works in the public system here (akin to your NHS). Of course Doc T is actually the head of the renal department, head of nursing, and head of one of the universities medicine departments, but this is also a guy who NEVER charged me a consultation fee - just the standard medicare fee(ie: he got rebated from the govt). I'd happily pay whatever for consultation by him though.. he's one of the best guys.

So my experience, after a poor start, has been very good. Most oif the hospital nephs I've had contact with have also been good. Not at the same standard, but I've had no real complaints.

I certainly don't feel screwed around or that the treatment I have had has been at all bad or unfair.

[brmoore]

    Guess I should feel very lucky. I have had the same Neph since I was diagnosed with ESKD and he is fantastic. I see him
once a month at the Hospital and he reviews my status and answers all questions in a very easy to understand manner. I  really
feel that he cares about my situation and never talks down to me. I should also note that before he sees me I am examined and
questioned by another Doctor finishing his boards as a Neph. After he sees me he consults with my main Neph and then they see
me together as a team.  Thank you University of Virginia.

[YLGuy]

1I was assigned a nephrologist when I was released from the hospital.  He gave maybe 10 seconds to you when he made the rounds in the dialysis unit.  I had a lot of questions and requested an appointment in his office and was advised that he did not think I needed one and offered one a couple of months out.  I had never been seen in his office.  I immediately changed doctors.  The old neph's group owner came in and said he would see me after he heard I was leaving.  I thanked him and said no. 
My new doctor is great.  He spends as much time with me as I like.  He loves having me as a patient because I am compliant.  I really like him. 

[KICKSTART]

Kristina , im always confused by your posts ! Although by no means is the NHS perfect but to have so much trouble as you have seems impossible. No doubt no matter what i reply i presume it will offend you. This is not my intention , as i just want to try and make points and give explanations as to your post.
Firstly i have asked you several times in previous posts if you are foreign (not in a racist way) but i deffo convinced you are , just by the way you write your posts. Maybe this leads to confusion of the NHS ?
Para 1) waiting many hours to see someone in not uncommon in the UK NHS hospitals , thats just the system. The lights , no one can do anything about ( i should know i have to endure 5 hours of torture every other day because of the lights. ) So when you saw the Neph and he took no time to do bloods /bp/examination or diagnosis , what exactly did he say ? and why did you not ask why he wasnt doing these things ?

Para2) Kidney biopsy ..it is quite common for the kidney to bleed after one, and you saw a Professor? You where lucky , in 10 plus years ive never seen a professor. But at the time you followed his advice as you didnt know any better.

Para3) NHS in London wanted a new biopsy and you refused and left without medical care ...sorry but YOU refused so how could you expect medical care ?  Also you usually sign a disclaimer ..in other words 'on your head be it '

Para4) NHS prescribed you lots of anti-hypertensives, but not really interested in whether you bp was controlled , they did not help you medically ? Why prescribe you BP tablets then ? There is no magic control over BP , i have taken every tablet under the sun but it has not brought my BP into line yet !  The fact they prescribed for you shows they were trying to help you control your BP.

Para4) The Neph ..tried to 'force you to undress ' Granted sometimes it is needed as they need to check your tummy , back , breathing , heat rate.  But to say he became violent and abusive and you made your escape 'just in time' ...just in time from what ? Why didnt you as soon as you got out of that room ring the police , go find someone in the hospital for help? And then he stalked you ? and you had proof , but the NHS ombudsman found nothing ..again if you had proof why didnt you go to the police? These people are not above the law and abuse , violence and stalking are all crimes !. Please note for future reference ...YOU have the right to have a female nurse in attendance for all consultations/examinations and i find in most cases a DR will actually go and find one before he examines you.

Para5) Again you say a doctor was unhelpful because you didnt become involved with him ? You didnt report this? , you didnt ask to see another doctor?

Para6) Yes i do agree many Nephs do look at their watches , mine is the same ! I just dont leave till i get answers or drag things on even longer by asking more questions !

Para7) The next few paragraphs i dont feel able to comment on as i cannot say , that a consultation with the 'doctors next door'? would have prevented your problems or not. As for being startled by black leather jacket/trousers and boots , it could be the DR was a biker ? There really isnt a code of conduct for a doctors dress , but we sort of expect a shirt and tie !

Para8) Time after time you state that doctors havent done this or that or havent given you explanations for things. The NHS eye specialist examined you for his own medical research ? Have you proof of this ? Why would he ?, given that he will see hundreds of patients in a week ? If he gaven no comment ,no explanations etc , i dont hear you say you asked for any ?

Para9) you say the Neph actually wrote to a GP on your behalf and the 'sarcastically' sent you copies? Firstly he wrote on your behalf and then sent you copies to prove and confirm he had done this ..wheres the sarcasm?

NO matter where you go in this country ..you walk into an A & E Dept and you will be seen , from that assessment you will then be referred. You can register at any GP's also. The NHS do not turn people away (unless you are violent ). If feel there is more to your treatment than you tell us and you just give us one side of the story Kristina ?
This post is not meant to attack or dis-believe you in any way , i have just worked through each paragraph you have written and questioned certain points you bring up and hopefully in others offered solutions ?  I know only to well the NHS may be free , but is full of faults and mis- diagnosis. But gross miss conduct can and is usually brought to justice. Minor irritations like bright lights in waiting rooms and long waits are all part of the NHS and sadly we all have to suffer them , also nephs who look at their watches , nephs who dont communicate very well , nephs who dont give very good explanations, but its up to US ..no one else to seek those explanations ..dont leave the room till you are satisfied and understand , tell the Neph you dont understand , ask what the next course of action is.

[Sunny]

I would have to concur with Kickstart.
There is more here than meets the eye. Are you suggesting a few doctors wanted to take advantage of you sexually? If so, why didn't you report them? Are you sure you are not misinterpreting their actions based on cultural differences?
Here in California there was a lawsuit brought against a gynecologist because women of the Muslim religion thought the gynecologist was sexually abusing them. Investigation concluded the gynecologist was doing standard care, it's just the women weren't prepared for standard care here in America and thought they were being sexually abused.
Regardless of what happened in the past, you need to find a way to move beyond it and deal with the circumstances now at hand. I'm sorry you were treated poorly in the past. It wasn't fair to you and has affected so much of what you are going through now. I hope you are able to put it behind you so you can go to the nearest health center and find a nephrologist who can help you now. With 10% kidney function, you should be seeing a nephrologist.
My nephrologist is not perfect, but I only have a few to choose from because of where I live, so I have learned to get along regardless. I have to keep in mind they are only human too, and have additional constraints put on them by the whole insurance system.

[kristina]

Thanks for your kind replies.

I am very glad, Richard, that you "got on the right road" after that dreadful experience with Dr. H.
I keep my fingers crossed with you that Doctor T won't retire for a very long time.
Your story gives me hope that I might also find proper medical care soon.

brmoore & YLGuy, I am glad you found a nephrologist whom you can trust and feel well looked after.

Kickstart, I think it is obvious that my stroke left me with dysphasia
& it still shows when I am tired & exhausted & I sometimes get my languages mixed up & make mistakes. 
Where is the problem?
You ask about the Professor who advised me after my first kidney failure.
He was not on the NHS. He had great medical integrity, was a humanitarian & I trusted him completely.
He was very much like Richard's Dr. T.
Para 3) I did not sign a disclaimer because I did not leave.
Para 4) There is no nurse present at a consultation with a NHS-nephrologist because there is a shortage of nurses on the NHS.
Had there been a nurse present, the NHS-nephrologists I saw would not have been able to act in such a horrific way towards me.
Para5) Of course I did report this and of course I did see another NHS-nephrologist.
The problem with the NHS is that complaints are not being investigated.
None of my complaints have been properly investigated and the Ombudsman concluded that I have nothing to complain about.
That concerns me very much because I feel very vulnerable in my ESRF.
 
Kickstart, you sound very suspicious and I find it very strange.
Why should anyone here on IHD say something that is not true?
We all try to survive and exchange our experiences with our ESRF on IHD.

I was very unlucky with NHS-doctors and I wish to survive despite my ESRF.
What is so difficult to understand about that?

Kind regards from Kristina.

[kellyt]

Up until I got my kidney I had the same Neph that originally diagnosed me.  I've had it good, too.  Yes, I have to wait sometimes and hour or and hour and a half (a couple of times) to get in, and yes he has occasionally rushed through my appointment when all was going well or there was no change, but when my creatinine started going up regularly and I was getting closer to having to start dialysis (or so he though), my appointments became more informative.  Also, when I found this site, which was one week before my first fistula surgery, I started asking more questions and he just opened up to me.  I think he knew I was in denial in the beginning and wasn't ready to know all the details.  I never asked any questions.

I'm seeing my post transplant Neph now and I like him.  I planned on going back to my original Neph, but when I did it was obvious he was more pre transplant, so I went back to my post guy.

Good Luck!

[monrein]

I've worked with several nephs over the years and have had only good experiences which places me, I fully realize, in the extremely lucky category.   My transplant neph is the head of renal trx at Toronto's largest hospital but I only see him with a working transplant.  When my first trx failed I had a pre-dialysis clinic neph with nurse, dietician, social worker available to me.  Once on D I had another neph whom I saw once a month at the hospital with a nurse from my self-care clinic in attendance.  Then new transplant and I was followed by the neph team on the trx floor but with visits (informal, friendly, courtesy visits really) by my trx guy and my D neph.  My transplant neph knew and agreed that I'd continue to be his patient once released from hospital but the system here is for the staff nephs to alternate months on the transplant floor and the month of my transplant was not his month.  However, several times I asked the team to ask my neph what he thought about something and they'd let me know.

I've been with this neph since 1985 when I had my first transplant and we have a very good working relationship.  If we didn't, I think I'd switch.

[cariad]

Kristina, I don't want to offend you, either, and I certainly consider myself to be on the side of the patient - ALWAYS - but I do not see that anyone can do you any service without just telling you to get to a nephrologist immediately. It is very frustrating for me and many other Americans (even my husband, who is a Brit) to read about people who have access to one of the most advanced systems of health in the developed world, almost entirely free of charge, but do not make use of it. I hear your frustration and anger, but I am not sure why you are writing to doctors all over the world. I really wish the world worked this way, but it doesn't. I know you've mentioned writing to American doctors, and then seemed shocked that they wanted money - a lot - from you for their services. As much as I believe that health care is a basic human right that should be available to all the world, you have access to health care. Access that millions of tax-paying Americans are routinely denied. Kickstart mentioned "waiting many hours" in the NHS and that the NHS is admittedly "full of faults and misdiagnoses" but I'm sorry, what do you think we experience in this country? I've been wrung through the medical system since 1975 and the big difference for me is that after I've been mistreated, rushed, forced to wait hours on end, disbelieved, given dangerously incompetent care, or condescended to by medical professionals, I know without fail I can look forward to a whopping big bill arriving in the mail.

I believe you have been through trauma. I think you would really benefit from seeing a therapist/psychiatrist to help you deal with this. I am not sure you will be able to do what needs to be done if you don't find a way to put the past behind you and tackle your current health issues. I know some cultures consider this an insult to suggest counseling, but I do not mean it as such. Many people here, myself included, have reached a point where we feel we need help from mental health professionals. Dialysis and transplant are big, big deals. In America (and I imagine the UK) they most likely would interpret your distrust of the entire NHS as a reason why you should not be subjected to the further emotional toll of transplant.

I am not sure what organizations like Doctors Without Borders could possibly do for you - you have not been denied dialysis, and that is most certainly what you seem to need. I am puzzled why you think that Australia or Spain would be demonstrably better than the UK? I believe you once said that you envied the healthcare in Wales. Well, I know you have every right to the medical care in Wales. If you are in London, you are a 3-4 hour train ride from Cardiff. Rather than uproot yourself and try to restart your life in Spain, why not go to Wales?

I know from reading your other posts that you are an excellent researcher and thinker. Unfortunately, eventually you are going to have to put your trust in another human being - a doctor. I think IHD is a great resource, but it cannot keep anyone in ESRF alive without dialysis. My GP - who is a wonderful doctor and human - gave me a very long pep talk at our last meeting, essentially saying to me: Stop reading everything and anything on the Internet, stop collecting that one last story of someone else's transplant experience, and just trust in the process and your own intelligence. I appreciate what he was trying to say. You really can overthink these things. (He loves the phrase "paralysis by analysis".)

About the experimentation, I know something about this since I have conducted human research professionally, and am now an official research participant myself. The rules - and I am going to bet this is very similar in the UK - are remarkably stringent for human research. It is absolutely illegal to conduct research without permission of the subject. Patients are members of a protected class, so it is even more difficult to do research on them than recruit from the general population. I can only speak to my own experience as a participant thus far, but I have to say I have NEVER been treated so efficiently and compassionately in my entire life. I make so much as an offhand complaint about something, and suddenly one of the most brilliant doctors I've ever met is on the phone to me moving heaven and earth to solve my problem. I have the pager numbers for a team of RNs who are available round-the-clock (and I've called the number more times than I want to admit in the two weeks I have been a participant). I have the phone number of the IRB in case I feel I am being abused or mistreated by anyone who works on the study. If I decide at any time or for any reason that I no longer want to participate, I only have to give a written notice - not even a reason - to the Principal Investigator. It goes without saying that there can be NO repercussions for withdrawing from the study, refusing to participate in a study, or refusing to sign any of the addenda requesting permission to keep blood and tissues samples for further research. Were I to withdraw, I would still be on the transplant list and still receive care from that hospital (barring insurance issues). I would say clinical trials are the way to go, but they do require a certain risk tolerance.

I have had all manner of doomsayers about my transplant. Maybe I've just learned to tune them out. Yes, it is irresponsible for doctors to say these things without qualifying it properly, but it happens all the time.

The biopsy I can understand. You have not had a biopsy in decades? My guess is that they want to see if they can confirm your original diagnosis. A lot has changed in the past 30-40 years. I was told I couldn't have another biopsy because my kidney was too scarred, so I can understand your concern, but I also understand that doctors are going to insist on recent evidence, because it may change your diagnosis.

Finally, I know you have quoted individuals who compare NHS actions to 'Hitlerism'. I would be careful to take what any one person says too seriously. There are loads of people in this country who compare Obama to Hitler (even photoshopping the mustache on) but that doesn't mean it has any relation to reality. Do you have links to others who have experienced this 'weeding out' that you describe? Have you gone to the media with your concerns?

Good luck, Kristina. I hope you get this figured out.

[RichardMEL]

I forgot to add that my current neph, Dr. T - he always listens to my concerns, answers questions and gives me as much time as I need and I never feel rushed with him - though he's one of the busiest guys I know - though really most times it's really to confirm everything is stable and our joint hope that a kidney comes along - however when I do have questions he's always happy to answer till I am happy. He also answers his email (eventually!) and is good with that too - so often if I want a change or to report a monthly lab value that is of concern(I see him every 3 months) I send him an email and he usually replies back, with a copy to the dialysis unit so they know his wishes, and everything's sorted. Honestly I have it very good in that area. I hear he is going to retire at the end of this year or maybe next year. Well that's life - I just hope I get passed on to a decent replacement.....

[sullidog]

Kidney bleeding for a biopsy is normal. Mine bled for several days, so much my neph thought he was going to have to do a lazor surgery to stop the bleeding. I really like my neph. He answers my questions, is very caring to the patients and smiles when he sees them, in fact I hear he doesn't smile until he's talking with his patients. He returns my pages/phonecalls. I see him once a month and I see his nurse practioner every week. She is the same way, kind caring, and you can tell that neither one of them are not there just for the money and I like doctors like that.
Good luck
Troy

[kellyt]

When I had my biopsy I had to stay overnight in the hospital and lay absolutely flat (24 hrs) - no pillow or anything, for fear of bleeding. 

[paris]

Me, too, Kelly.  I just wanted to go home.  I can't lay flat for two minutes let alone 24 hours!!

[kellyt]

That was the first time I'd ever been in the hospital and it was a strange experience.  Thank God at that time I had not yet herniated the disc in my back.  They would have had to sedate me for sure.

[RightSide]

I am wondering how kidney patients are treated by nephrologists? Are there any rules of conduct?
 The main interest of all NHS-nephrologists I saw over the past 30 years, was, to finish a consultation a.s.a.p.
There was no time to answer my questions during the few minutes I was given.

What did you expect?  In your country, doctors are government employees. They're paid by the Government and managed by the NHS.

My nephs have NEVER treated me that way. They're always open to discussion, and they encourage me to do my own research on the problem.  They have a holistic attitude--they are very interested in dealing with any comorbid conditions we patients might have, such as diabetes, which might make our kidney problems even worse.

Unfortunately, Medicare may start interfering with this.  And if we institute the type of health care "reforms" that President Obama wants to see, our health care system will start to resemble yours: Bureaucratic, the arrogance of government civil servants, the whole nine yards.


"Lady, I'm in the civil service.  If you want to fire me, you'll have to wait till I die"
    -- Govt. clerk to Lucy Ricardo, "I Love Lucy"

[MooseMom]

I lived in the UK for almost 20 years.  During that time, I spent 6 weeks in hospital because of pre-eclampsia and then a C-section.  I was treated with the utmost care from every doctor and nurse who looked after me, and over 6 weeks, that was a lot.  They just did what was best for me without having to constantly be on the phone with an insurance company getting approval to do this test or that test.  And after I was discharged, I never saw a bill.

My baby was seen every week by the GP's nurse for checkups and weighings.  The district nurse came by my home regularly to check on our progress.

One evening I became very ill, and my GP made a house call to my home at 10:30 at night.

The NHS is by no means perfect, but the people of Great Britain have made a collective decision that this is the kind of health system they want for themselves and each other.  There will always be a debate about funding, just as there is here in the US, but for the majority of the British people, the NHS is sacrosanct, and a politician who wants to be reelected will say otherwise at his peril.
Doctors and nurses in the NHS are far from being government drones.

[MooseMom]

I have been in the care of a neph and his staff here in America for five years now.  On top of that, I am undergoing all of the steps necessary to get on the transplant waiting list.  I am about to go on dialysis.  I have seen a LOT of medical people here.  On top of that, I volunteer at the local hospital.  I have been treated very well by just about everyone I've come into contact with.  However, getting access to these people and their care is a battle because standing in my way is BIG HEALTH INSURANCE and BIG PHARMA.  I spent all of yesterday afternoon....and I do mean ALL of yesterday afternoon...on the phone with people who have not done my referrals in a proper way.  I have a referral to see about getting my fistula done, but the referral does not include approval for a doppler ultrasound, so it means I either need a new referral or I will have to make two separate appointments, one for the consult and one for the ultrasound, meaning I have the privilege of spending an extra $30.  My doctor and I do not get to decide what kind of test I will get and when.  No, the suits at my insurance company...whose raison d'etre is profit...get to make that decision.

If you want bureaucracy and arrogance, let's just stay with our current health care system.  And if you don't like the idea of "Big Government" having a say in your health care, then let's scrap Medicare because government doesn't get any bigger than that.  Scrapping Medicare would free up a shedload of money that can otherwise be used to reduce the enormous deficit, and seniors and people on dialysis will all have the freedom to go out on their own and shop around for affordable insurance.  How's that for a plan?  Let's see if a health insurance corporation will see us as a profit-making enterprise.

[kristina]

Thanks again for your replies

Sunny, interesting your mentioning Muslim females in the USA
misinterpreting the standard care of a gynaecological examination.
Muslim-females here in the UK are protected by their community.
 
No such luck for non-Moslem-females like myself.

I have not had a NHS-gynaecological examination for almost a decade now.
Gynaecological chairs in NHS-hospitals/Surgeries etc.
are often placed next to a door where people walk around
without consideration as to who is on public display whilst being examined.
 
If you happen to be a female who doesn’t bother about this, then all is fine.
But if you feel strongly about your dignity, you must avoid a NHS-gynaecological examination
& rather save up money to pay privately to make sure your dignity is not being compromised.

Moosemum, I am sorry I cannot believe you.

Rightside,  thanks for your realistic understanding. I assume you have read about the terrible corruption in our Parliament?

Cariad, thanks for the compliment, but I don’t feel bright at all.
I sure might have had a much better chance had I “done my PHD in corruption somewhere in the East End of London”
instead of continuing my studies at the British (Museum) Library whilst a civilized society I so very much admired
crumbled around me and does no longer exist.

Cariad, I don’t think a therapist could help me when my priority must be to find a nephrologist as my kidney function is only 10% now.

I have talked to many SLE-patients who felt they were being manipulated into medical research/experimentation by Lupus-UK
& by their NHS-doctors/GP’s/rheumatologists & that is why many Lupus-sufferers do not belong to Lupus-UK any longer.

I am happy to have asked questions about nephrologists in other countries.
It gives me a better idea & confirms that decency and medical integrity still exist & I needed to know that.

Thanks again, Kristina.

[-Lady Noir-]

I cannot believe i never knew what a nephrologist was, until a friend mentioned it well after Mike was on dialysis.
Our 'nephrologist', we call our dialysis nurse because that is how she introduced herself. Kiwi enough for ya?

Anyhow, she was frustrating to say the least in the beginning. The training & such, Mike had some vomiting issues when being filled & drained, and she kept telling the doctors etc that he was suffering from uremia, when it was literally being filled & drained at first which made him vomit. Even after explaining to her again & again, she still continued to tell the docs her assumption.
However, after a while she began to adapt to our way of thinking, and shes great. Haha

[MooseMom]

Kristina, what is it about my posts that you do not believe?  Do you really think that as I am struggling with the terror that accompanies beginning dialysis whilst at the same time I am jumping through hoops to get on the transplant list I have either the time or energy to concoct some fantasy for no other reason than to thwart your complaints?  To quote you yourself, why would anyone here on IHD say something that is not true?  You sound very suspicious and I find it very strange.

[KICKSTART]

I have bitten my tongue all day about this post but cannot do so any longer, if it results in a ban then so be it and i apologise in advance to IHD but ....Kristina you are talking a load of utter clap trap !

Your quote ; I have not had a NHS-gynaecological examination for almost a decade now.
Gynaecological chairs in NHS-hospitals/Surgeries etc.
are often placed next to a door where people walk around
without consideration as to who is on public display whilst being examined

Utter total rubbish , you are taken into a private room and if anyone should need to enter they knock first and wait till its ok to go in .

Your quote;Para 4) There is no nurse present at a consultation with a NHS-nephrologist because there is a shortage of nurses on the NHS.

Absolute rubbish once again.

You state that you refused a second biopsy and then complain that you were not treated. YOU refused.

I am British , i was born in the UK and have spent all my life here with the NHS for my medical care. Yes things have gone wrong , yes i have had run-ins with doctors as many of you know, but dont i tend to get things resolved?

You quote; Para5) Of course I did report this and of course I did see another NHS-nephrologist.
The problem with the NHS is that complaints are not being investigated.
None of my complaints have been properly investigated and the Ombudsman concluded that I have nothing to complain about.

And yet in your original statement you say you have proof from reading your notes  that you were being studied and stalked ..so explain please how that was ignored ?

I dont know where you originate from , because time and time again you will not disclose this , but despite its many faults i cannot see the NHS torn apart and described as some sort of horrific monster by you. Its not perfect , but it does its best with what it has . I suggest if you want perfection you should go private. Maybe where you originate from you had private health care and expect the same from the NHS ?

Also you never fully explain why you have no NEPH or GP ? except for your distrust of them . Ask any British person on this forum , if they can walk into an A&E dept tomorrow and if need be from there get referred to the correct specialist for their illness. Ask any British person on this forum if they can walk into a GP's surgery and register. This is the way it works in the UK . Go knows what our American friends must think of the NHS according to your posts. We can expect to be assaulted , stalked , lie with our legs up in the air with people walking past us ...oh come on. Im sorry if this is harsh but so much of it is so untrue and i feel i must defend the NHS ,despite its faults.
Maybe you should go abroad and pay through the nose for the decency and medical integrity that you desire that you obviously feel the NHS is lacking.

[Zog]

Kristina,

I have only been regularly reading IHD for about a month now.  It seems you spend a great deal of time worrying about your past in your posts.  If this is part of a process for you to learn to accept your past so you can move on then I understand, but I don't know if your way of thinking is constructive or allows you to live a fuller life.

Doctors are people and none of them are perfect.  You will have better health working with them rather than against them.  Use them as a tool to make your life better.  They went to med school and deal with many patients with problems similar to yours.  You need their help whether you like them or not.  Try to communicate assertively and work constructively with them the next time you have an appointment.  If you must get a new nephrologist, please don't bother him too much with your past if it isn't health related.  Don't set your expectations too high.  A nephrologist can't really fix damaged kidneys, they can keep them going a little longer with medications and help people transition to dialysis or transplant.  There is no magic wand they keep locked in a box that they only use on some patients.  All that time you spend waiting on them, they are most likely helping another patient just like you.  If you were that other patient you would want the other patients to wait.

Zog

[Romona]

Kristina, is there someone you could take with you when you are able to find a doctor? Maybe you would be more comfortable.

I don't blame you for refusing a biopsy. I had a fistula after one, I spent a few days in the hospital after one.
After being discharged I got sick and few days later. Another hospital attempted to drain an infection off that kidney.
I did not have an infection and they caused internal bleeding. I had lost alot of blood and it took a year to recover what function I had.

[kristina]

MooseMum,
My comment was not addressed to you personally.
I was just wondering how one can receive constructive NHS-health care??

Zog,
You have a good point. 
I am going through the process of trying to understand the past to create my future.
It concerns me though, that no solicitor takes my case.
That seems very strange in a democracy.

Ramona,
Since 1991 I have never seen a NHS-GP/doctor/nephrologist/rheumatologist on my own,
but unfortunately it did not make any difference.

Kickstart,
You say, you have bitten your tongue about my post all day but cannot do so any longer?
Are you at it again?
Are you kicking again?

When the NHS-Ombudsman’s (Ms. Abraham) office informed me
that I have nothing to complain about, I asked to see my medical NHS-file.
My NHS-medical-file is over 30 years old & has become
a very, very thick medical file with many, many, many papers in it.
My file was obviously gone through in a very sloppy way
& discriminating letters plus the stalking letter “fell through the net”.

Kickstart, you have not answered my question about your Dialysis Centre.
I feel sorry how badly you are being treated there
& I want to make sure to avoid this Centre,
but you have not told me where it is located.

I don’t comprehend why you try to bully me into telling you where I was born?
I don’t know whether you are male or female, where you live or what you do,
& I believe that if you want to tell me about your life, you will do so.
I would never bully anyone, but you seem to enjoy bullying me. Why?

Isn’t IHD the place where we exchange our experiences about our ESRF
& learn how to survive despite ESRF?

Kind regards from Kristina.