I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on March 01, 2010, 12:49:11 AM
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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!
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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.
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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.
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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.....
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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
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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.
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Me, too, Kelly. I just wanted to go home. I can't lay flat for two minutes let alone 24 hours!!
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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.
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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"
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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.
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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.
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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.
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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
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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.
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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.
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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
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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.
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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.
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I think you are very wise not to go alone. I have had a few uncomfortable experiences too. I understand your frustration. And I like you try to learn from past experiences. I hope you can find the kind of care you are comfortable with. You are right IHD is where we learn from each other.
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Gee Kristina I can't help but agree with some of the others here. Your assertion that "most often" a gyno exam is done in a essentially public place smacks to me that you had one unfortunate experience at some point and can't let go. Your other posts at times back this idea up - for example your whole thread about being taken off the transplant list in the 1970's. You *appear* to hold a grudge for a very long time. Why is that?
It seems that you may be your own worst enemy at times because *I* think you are letting the demons of your past guide your actions and reactions - for example you won't have a gyn exam because of whatever happened years ago that you weren't happy with? Your health is the one losing out there.
Australia runs to a fairly similar system as the NHS - Not the same though as we tend to pay for some things that would be free under the NHS in the UK, but in our public hospitals everything is provided free. My dialysis, for example, is provided with no upfront cost to me (apart from a few meds, which are subsidised by the govt anyway). Anyhoo what I'm trying to say is that I find it hard to believe some of the things you're suggesting to happen. True, I have never had to visit a NHS hospital in the UK (despite being there on many occasions) but as I say we follow a very similar system here and while many MANY things could be improved the care is the best they can do. OK I haven't had a gyn exam, but whenever I've had any kind of scan or thing it's ALWAYS been behind curtains, in private rooms, whatever. Even on dialysis if I've had to be examined at the VERY least they pull a curtain, and more often than not use a private room. I can't see how it would be any different in the UK (or most other parts of the world for that matter).
btw I have seen my file which has been active since 1993. It's big too - full of test results, examination write ups, x rays, biopsy results, God knows what else. So what?
I don't mean to sound rude or offensive but it does appear to me from the many messages you have written that you have an axe to grind. I am NOT saying you have not been treated poorly in the past - but it does seem that a lot of your experiences happened perhaps decades ago, and you are still holding the system liable for that.
I worry that your own health is suffering because you won't even consent to a lot of care you SHOULD be having because of injustices (perceived or real) from the past. For example you refused a second biopsy for whatever reasons. That is your choice - but you seem to hold the system accountable for your choices.
I really don't get how you can claim the NHS says they have nobody that can treat you. The only reason I can think of this is that somehow you would not be eligible for NHS care. However you seem to suggest you are a UK citzen at this point, so you should have it and don't tell me there are no nephrologists left in the UK - that's plainly silly. In another post you suggested they claimed they had no experts in your specific condition. Maybe so, maybe not.. but even still why can you not receive the best care they can give (ie: nephrologist at the bare minimum). You mention a number of times that you're not originally from the UK - there's almost an insinuation that you're being discriminated against because you're not natively born - is that true?
As a side note I will relate that my mother had a very serious condition - a pulmanry embolism caused by a DVT which moved from her leg up to her lungs. Nobody in Australia was expert in this particular situation, as it is quite rare - however there was(is) a team doing the latest work at UCSD in the US. The oz govt. actually paid for my mother to fly over to San Diego and be treated by the team there in the hopes to fix the problem. They were apparently prepared to spend over $600,000 for the procedure (because it could not be performed in oz). Unfortunately when she got there the US team declared her case was too severe for them to treat, and so she was sent home with nothing (and she passed away 5 years later). As far as I am concerned our health system did EVERYTHING they could, and then some to help her out...
I don't know if the UK authorities would do something similar but I tend to think they would do all they could to support one of their citizens.
If you're that unhappy with conditions in the UK why do you not either return to your original homeland, or perhaps find somewhere else in the EU to seek treatment?
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I don't understand why everyone has to be so judgemental of someone else. If I recall this a place to vent and rant about experiences, share knowledge and be supportive. This post has been picked apart by so many. So what if something has made someone leary and question if they have gotten proper treatment. So what if someone is holding a grudge. If you find posts hard to believe then don't read it. I would be afraid to ask questions here if I got these kind of responses. I admire all of you that are so assertive and are able to get the care you like. Not everyone is like that.
I would be highly offened if people picked apart my posts like this one has.
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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.
:rofl;
As opposed to the modesty and humility of the typical American MD? RightSide, just because you have a good nephrologist, you cannot possibly believe that this somehow represents the superior state of US health care. I can still remember the arrogant, effed-up statements that doctors made to me 20 or 30 years ago. From my decades of doctor experience, I have met some that believe they are gods and act accordingly, many that were forgettable for their mediocrity, and some that I would happily put in my will. That is what I would expect any average person to report after meeting a large number of doctors or any other professionals in any country.
Kristina, where to begin? First of all, when I suggested counseling, I did not mean in lieu of seeing a nephrologist. I meant see both, like most of us who see several doctors in a typical month. I agree with Richard so strongly. These grudges are ruining your health, and I think counseling may be the only way you can start to unpack what actually happened over your life and move forward. I am sure much anger is justified - I would be amazed if anyone could receive chronic illness health care for as long as you have without a horror story or two. However, by my count, you have run across three sexually inappropriate MDs (one of whom was female) and at least one violent maniac who introduced himself as such (the black belt). What did the person who accompanied you on these appointments have to say about all of this? Why did they not intervene? Do they agree with your interpretation of events?
I think it's fairly clear that solicitors won't take your case because they don't think you have one. It works the same way here. If you make a criminal complaint, the DA would need to consider whether or not your case is strong enough to pursue in court. That does not mean that whatever you are claiming did not happen, but solicitors look at everything in terms of whether or not it can be proved in court, and whether or not the actual letter of the law has been violated. I find it difficult to believe that you have *never* met a decent, competent NHS doctor. I find it equally implausible that you have all of this evidence of serious ethical violations, and still no attorney will touch your case. I often read the BBC site, and have seen doctors found guilty of misconduct that does not come close to your claims.
From what little I've read about Lupus UK, they administer grants for research on lupus. Lupus is an incurable autoimmune disease, so the best hope is to continue researching ways to manage, and maybe even cure, the condition. Perhaps they urge their own members to participate in this research because they feel it will benefit them. When I asked for links, I meant can you provide Internet links to articles or blog pages from people who have also felt pressured and bullied by Lupus UK? I would be interested in hearing more about what exactly the organization is saying or doing to make you feel this way. As I said, I am a research participant in a government funded study, and I certainly had to fight for years to find a doctor who would allow me to participate. My experience is that it is quite difficult to get into medical studies because they broadly exclude so many individuals. I cannot think that you would qualify for most medical studies because unfortunately, you have so many co-morbidities.
Richard, that story about your mother. Oh. My. God. I could barely read the words "$600,000" to my husband. Yours is truly an incredible country.
Ramona, I don't mean to be cruel to Kristina, nor "pick apart" her posts. I think most people are trying to help her, but when the answer is "see a nephrologist" and she argues that she cannot, what is everyone supposed to say? Her GFR is 10! Also, I am personally fed up with people using horror stories from Britain/Canada/France/Australia/Mars to argue against desperately-needed health reforms in the US. I think Kristina is well aware that this is a sensitive and highly political topic for many, and tempers may flare. The assertion that the whole of the NHS is corrupt and incompetent is going to spark a debate just as surely as saying we should open up Medicare to the entire US.
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Oh Kristina , i wash my hands of you ! One thing i am not is a bully , i have explained that ive asked where you originate from because maybe A) You have trouble understanding what doctors are saying or B) In your country you got different health care. and if asking someone where they are from is such a big issue ..then so be it ! Obviously for reasons only known to you you wish to hide this.
Convienient that your proof fell through the net isnt it ? Alot of people have very very thick files with lots of papers in them , but a complaint is a complaint and especially one with PROOF in it !
I dont ever recall you asking me about my centre ? but once again is this a diversion from answering my questions? I doubt very much you would end up at my centre as you have already stated numerous times that no one will treat you.
And as for anyone that thinks im attacking Kristina for her posts , im not. I just think they are so far out there and to be honest i need to justify the NHS , being both British and a part of it all my life , i think im quite justified in doing so. Oh and just on a final note ..Lupus ? My mums best friend has Lupus and gets the best of treatment on the NHS.
Anyway at the risk of getting banned i will stop posting replies to Kristinas posts and let the rest of you do that . I just would like to state that although not perfect , the NHS (or the people in it) is not a placed to be feared , full of stalkers , private research, no privacy and no treatment. It is no different from most other places except we may have longer waiting times! I in fact dont have the problems half of you have, that pay for your treatment ! I get Aranesp (epo)weekly without question , i get all the latest drugs without question , i get the most expensive brands without question and when on PD i got Extraneal without question. Yes ive had run-ins with doctors but that was more a conflict of personalities or disagreeing with a treatment or an attitude problem from a nurse, but then i bet so have a lot of you and you pay !
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Like Kickstart, I have complete confidence in the NHS, and ok things do not always run smoothly, what hospital ever does, but I would not like to be treated any where else in the world. I have been in hospitals in Greece, lets say they do there best with what they have, but their people deserve better. Hand on heart I would not call the NHS.
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I have calculated that over the past five years (which was when it was discovered that my fsgs was far more advanced that I had thought), my husband has spent over $10,000 in out of pocket costs for co-pays on my meds and trips to the neph, and I'm not even on dialysis yet. We HAVE insurance, but the bills are still steep. And I use generics if they are available.
I left the UK about 7 years ago, so things might have changed, but when I was there, you paid a flat rate for any prescription your doctor gave you. I'm sure the price has gone up, but the last I recall, it was about $10. However, you did not have to pay if 1. you were under the age of 16, 2. If you were over the age of 65, 3. if you were pregnant, 4, if you had given birth within the past year, 5. if you were on income support, 6. if you were in the military. (Anyone here from the UK, please let me know what the current rules are; I'd be curious to know). I never paid to see my GP nor any consultants on the NHS. However, through my husband's employer, we did have private insurance (BUPA...does that still exist?), so a couple of times, I saw a consultant privately and was charged about $100. So, people in the UK DO have access to private insurance if their employer offers it. It works well for acute illnesses, but the NHS is generally better for chronic illnesses (in fact, I don't think private insurance companies in the UK will cover chronic illness, anyway. Someone please let me know if that is still the case.)
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The reason I posted the above was to illustrate that there are different ways of doing things. I am curious...how many of you who are American know how much it costs to see your nephrologist? I used to see mine every three months, but now that my kidney function is worsening, I see him every 6 weeks. I pay $30 each time I see him, but I have no idea how much he bills the insurance company. Does how a neph get paid influence how he treats his patients? That seems to be the underlying question here. Will a neph give you better care if he receives reimbursement from Corporate America or from the socialist/fascist/communist/"Big Government" NHS? That's something to ponder.
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I have calculated that over the past five years (which was when it was discovered that my fsgs was far more advanced that I had thought), my husband has spent over $10,000 in out of pocket costs for co-pays on my meds and trips to the neph, and I'm not even on dialysis yet. We HAVE insurance, but the bills are still steep. And I use generics if they are available.
I left the UK about 7 years ago, so things might have changed, but when I was there, you paid a flat rate for any prescription your doctor gave you. I'm sure the price has gone up, but the last I recall, it was about $10. However, you did not have to pay if 1. you were under the age of 16, 2. If you were over the age of 65, 3. if you were pregnant, 4, if you had given birth within the past year, 5. if you were on income support, 6. if you were in the military. (Anyone here from the UK, please let me know what the current rules are; I'd be curious to know). I never paid to see my GP nor any consultants on the NHS. However, through my husband's employer, we did have private insurance (BUPA...does that still exist?), so a couple of times, I saw a consultant privately and was charged about $100. So, people in the UK DO have access to private insurance if their employer offers it. It works well for acute illnesses, but the NHS is generally better for chronic illnesses (in fact, I don't think private insurance companies in the UK will cover chronic illness, anyway. Someone please let me know if that is still the case.)
Yes you are pretty much spot on ! All you say is generally true ! (and you will also be able to vouch for how you were treated and the conduct of the staff and the privacy you were given during any treatment or consultation !!!! )
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Whenever I needed an exam of any sort, I'd just pop down to my GP's surgery and see either him or Sally, his nurse. She would do my annual pap smear, and yes, it was done in privacy. The surgery was actually a converted detached house, and my GP's office overlooked the lovely garden. My neph here in the US works out of a nasty old clinic. Blech.
Oh, I have to relay this story about my current neph. He's a human Eeyore. A couple of months ago (remember, this is an emotionally fraught time for me as I am essentially waiting for my kidneys to fail...), he told me that I wouldn't die of kidney failure, rather, I would die of complications of kidney failure. I knew this was probably true, and I never expected much handholding from him, but I thought this was a bit OTT. Not too sure this would fall into the "care and compassion" category.
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Stop!
I do not allow you to make fun about my situation!
Shame on you!
I was going to ask you to give me the benefit of a doubt or show some kindness & compassion, but I shall not bother.
Why don’t you check-up what I have said?
Why don’t you complain to the UCH in London saying there is a distressed female in ESRF (kidney function10%) ,
who has no NHS-GP/doctor/nephrologist/rheumatologist to go to & she was put on the wrong NHS-road at the UCH
by two NHS-nephrologists, one Dr. C (the stalker) and one Dr. O .?
Why don’t you write to the Prime Minister complaining there is a female in ESRF
who for over 30 years was badly let down by the NHS
& she received by post a medical letter dated 11th April 2005
stating there is no specialist in the UK to treat her Lupus/SLE/MCTD?
Why don't you complain she has had no NHS-GP to go to for medical help for many years?
Why don’t you complain that she has written to the Prime Minister by fax (0207 9250918)
(i.e. 25th September 2008, 20th October 2008 etc.), but not received any help or answer?
Richard, why don’t you check-up in Australia?
A group of patients deal with health-care accidents in Australia
& I talked (on the phone) to a very kind and understanding lady & she helped me to understand
that the gynaecological chair was not put in front of the door to humiliate me personally.
She helped me to realize that I have to pay privately if I wish to have a decent & dignified gynaecological examination.
I am very disapppointed by the audacity of KICKSTART trying to imply I am not telling the truth.
She has made fun of my situation in the past & later denied it.
She has not been telling the truth about another matter either.
Finally I wish to thank you Romona. It is so good to know that you are here.
You obviously have had similar experiences & you are sensitive &understanding & I thank you for that.
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Kristina, I have no knowledge of the NHS system. I just know things here. But I learned more from this board than anywhere else. I have passed my positive experiences to others at my workplace and others living around me. I was fortunate to have people I could ask about things. The National Kidney Foundation has been helpful to me. You reached out for help, people that know the system weren't able to direct you to helpful places. If someone knows a great place to help you with Lupus, it would have been nice if they shared that information. I am fortunate to have some very good doctors now. I can ask questions and be referred to people that can help me. I am changing my PCP because I feel I was referred to a better practice that will work with my transplant team and other doctors I see. Not that they were bad doctors, they don't feel comfortable with some issues that have come up. I often tell people to join this board because of the knowledge and support.
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Quote; I am very disapppointed by the audacity of KICKSTART trying to imply I am not telling the truth.
She has made fun of my situation in the past & later denied it.
She has not been telling the truth about another matter either.
Kristina quit while you are ahead , before i really DO start to speak my mind . I have had the good decency to say i will not post replies to your posts in the future as i find them so far out there ! So please revert from directing the attention to me and by doing that manage to divert the many questions asked of you . I can expect many on the forums from abroad to take you at your word as they dont have any first hand knowledge of the NHS but YOU forget , i do !!!! This is my last word on the subject and any other subject you write about !
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Kristina,
Regardless of all this, please find a nephrologist for treatment. You owe it to yourself.
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I'm pretty sure most kidney patients have had bad experiences with hospitals & the like, some of corse, as i have been reading, worse than others.
I'm sorry to hear Kristina, of yours :(
I do, hate to assume here but, you sound like a stubborn person, and with that trait alone i'm pretty damn sure you can give your health another chance. :waiting;
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The Neph we had up until a week ago treated us very poorly and his office staff were the rudest people I have run across in a very long time. Mind you we were paying in CASH when we became patients there.
We dumped Dr Dumdum as soon as we could and interviewed a new Neph, discussed our concerns and issued with the previous guy and his office. This new Dr actually looked at us and discussed things with us! The other guys all but said NO, YOU don't get to talk and I'm only going to ACT like I am looking at your chart. He didn't even know what medicines my husband was on. My goodness.......it was awful. But now this new guy shows promise.
Twirl -- it worked out!!!! :clap;
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I do not allow you to make fun about my situation!
I do not believe anyone here has "made fun" about your situation. Many people have tried to offer helpful suggestions and support. I don't see anyone making light of your situation - I certainly haven't. Yes, I questioned some things and made some suggestions from my point of view - but that's just an opinion - for right or wrong. Certainly not making fun.
(oh and Ramona - I DO appreciate your point about me picking apart kristina's post and making comments. Yes, perhaps I could have phrased things better I absolutely accept that and I'm sorry if kristina was offended - that wasn't really my intention - I guess I wanted to stress my view (and it's just an opinion, and I specifically said I've never been treated under the NHS so clearly I have very much an outsiders viewpoint) that I feel perhaps kristina is being her own worst enemy at this point with a distrust of the system and professionals whoose job it is to look after her.. and that's upsetting because clearly she is someone who NEEDS help - and quickly).
Richard, why don’t you check-up in Australia?
A group of patients deal with health-care accidents in Australia
I'm sorry but I actually don't understand what you're saying here. I'm not trying to pick apart your post to be mean or anything. I seriously don't understand what you're suggesting. I have been treated by the Australian medical system (public) for all of the 39 years of my life so far, with obviously much more since I was diagnosed 17 or so years ago.
If you're suggesting that I don't know what I'm talking about with regards to the Australian system.. well I can't speak for ALL Australians and how they are treated (let's not forget poor Jessup's dad and what he went through in Darwin) but I most certainly can relate the care that I and my close family have had here - and I've never experienced anything close to what you've suggested.
I'd be happy to respond further if you explain more clearly just what you meant. Again I'm not making fun I'm honestly confused by what you're saying to me.
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Kristina,
I'm sorry you've had such a rough time of it. The past is gone. A lot has changed since 1971. Medical technology has changed. Processes have changed. No one can set the clock back to undo the wrongs you've lived through.
You mentioned that you're Muslim. I don't know anything about living as a Muslim woman, but I suspect it's a very conservative lifestyle, and it might be that part of the problems you're experiencing are due to cultural misunderstandings. Is it possible that part of the problems are due to cultural differences? The people you've worked with in the medical community might not understand your conservative needs and you don't understand their less conservative ways. Can you find another Muslim woman who can recommend a nephrologist that she's comfortable with? Perhaps a Muslim nephrologist?
The good news is that the future is still available to you. Is it possible for you to let go of the past to give yourself a better future? If you can, put everything that happened behind you, make an appointment with a nephrologist and talk to him with the attitude of "This is where I am today. Where do we go from here?" Don't worry about what he's wearing (black leather jacket, etc). If your eyes can't handle the lighting in the medical setting, go prepared with a pair of dark glasses. Since you say communication is sometimes a problem because of your past stroke, write down the questions you have before you go when you aren't stressed out and hand the list to the doctor.
I wish you well.
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Deanne, that is an excellent post with many postive suggestions. Thank you. Thankfully, doctors and medical care has advanced in the past 30-40 years. Kristina, start fresh. Just worry about the kidney function right now. Take care of this problem and the rest will fall into place. One step at a time. We all want you to find good medical care. And I always take a list when I go to the doctor, because I know I will forget things when I am with the doctor. Good luck. We know there is a doctor out there that will see you and treat your kidney disease. :cuddle;
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Deanne, I agree with Paris, great suggestions. I think what Kristine was trying to get across about what happened in the past is why she doesn't know where to turn. She had tried to summarize why she feels the way she does. I haven't lived her life or anyone else's life. I am not going to judge the way she feels. Everyone experiences things that shape their personality. Some people can overcome things with no ill effects. What is traumatic for me might be nothing to someone else. I am just so surprised at some of these reactions. She reached for support from people that are experiencing the same disease and instead so many don't believe her. She needs to heal and like Paris said start fresh. Reaching out and asking for help is a great start. I don't know what kind of support or resources she has. I don't know what cultural differences are an obstacle for her. But this isn't the only post that she has made where I can not believe the reaction.
This thread has been a real eye opener to me. It is a reminder that I should be more tolerate and understanding to those suffering what ever life has thrown their way. You never know the impact you have on someone's life. A kind word or a smile might be the lifeline some one needs at that moment to restore hope.
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Thanks Deanne - great post.
I think I must have missed that Kristina was Muslim. Not that that is an issue for me personally but I think Deanne raises very valid points about cultural misunderstandings. I think also the UK has probably come a LONG way in the past 30-40 years in this respect - there are now so many faiths and cultural groups living there I think understanding in the medical (and other) communities would come along way and certainly if Kristina requires extra levels of privacy to make her comfortable then I do not see why they would not be afforded to her if she just explains why a particular setup may not be comfortable for her. I think a lot of folks these days are sensitive to such things.
Thanks for the post.
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Kristina posts in her March 2nd post that she is not Muslim.
Though it doesn't matter what religion she is to me. I have just suggested that if she is from another culture, medical treatment in England might be different for her. Cultural differences can influence so many things. Heck, I have culture shock just visiting the Deep South here in the U.S. It's not that it's any better, or any worse, it's just that it's different and I have to adjust and self reflect when I am there. ( They are super nice in the Deep South with excellent manners and I try not to be an abrasive loud mouth Californian).
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I didn't want to upset anyone with my pervious posts. But I feel now it is going in the right direction. Positive suggestions and reassurance is so helpful. Hopefully someone will help Kristina understand that things have changed. Maybe she won't feel so alone and continue to seek help. I just think she has concerns that some might feel aren't valid. I hope she finds a way to be more confident and less reluctant. I hope she doesn't feel alone.
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Good point Romona. It doesn't matter if anyone else thinks Kristina's concerns aren't valid - what matters is that she feels them and they are important to her and in order to get the treatment she needs - either she needs to come to terms with her concerns or explore options with the medical professionals to allay those concerns so she can get the help she needs.
One thought occurs to me though. Clearly Kristina is getting some sort of medical care because she's aware of her kidney function - that suggests she's seeing at least some sort of renal professional (I suppose a GP could order the appropriate tests, but I'm sure they would prefer to defer to a specialist anyway).
I just hope that Kristina can find a way to satisfy her concerns and get some help.
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Hi Kristina,
Look i want to say a couple of things, pretty much just re-itterating what i've said to you before. You know i feel for your situation but i really think you should let bygons be bygons and take care of your health first. As my mother would say, "you're cutting off your nose to spite your face". I really like talking with you but you kind of remind me of my brother, he was (YES PAST TENSE) diabetic and refused propper medical treatment he died before his 40th birthday. DON'T let that happen becuase of your row with the NHS.
Look from experience i know that not all NHS Dr's are bad becuase i'm under two british expats now in the transplant team and they are fantastic. It's trial and error to find a Dr you like. I'm guessing you'd be more comfy with a female Neph, but then they don't always have the same bedside manner as the men.
From personal experience once your admitted all dignity goes out the window. After my son was born i became quite used to Dr's lifting my shirt and just doing what they wanted (not in a bad way) becuase they are more interested in figuring you out than worrying about your privates. I even had a male nurse hike my shirt up (very recently) to do a heart check, it made me a little uncomfy but he wasn't interested in anything but getting the tabs in the right spot.
As for meds, it's trial and error i've been on quite a few over the years and had some bad reactions and nil reactions. i finally found two that work for me (perivasc and metropolol- for high heart rate.... my resting heart rate is 115 BPM). As to nurses in a neph appt, i've never had one present both of my nephs are male and the appt has always been just with them.
Without a neph you wont get on dialysis or onto the transplant list, please let go and just worry about getting your health on track, you really need to be under a neph at 10%. It really doesn't take much to go from 10% to 4% (look, thanks to the high heart rate my kidneys totally died in the space of 3 months i was voiding 1.5 lts and that dropped to 150mls from October to December) and it can happen without you realising. Just having your bloods done wont tell you everything.
Jenny
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Jenny your post reminds me of something one of my D nurses said awhile ago.. basically "We've seen it all. Whatever you think we haven't seen - don't believe it" - and well after over 3.5 years in that place I'm beginning to see that. Now don't get me wrong *I* don't see it (thank God!) - they always pull curtains or put "special needs" folks in isolation rooms, or whatever but like Jenny says they're less interested in her girlie bits than doing their jobs to make her better. At some pioint you just have to realise that that is all part of what we have to deal with.
Heck maybe I'd quite enjoy it if a nurse remarked on my privates - in a positive way of course - and if she was female and hot!!!! OK, I can dream can't I?!! :rofl; :rofl; :rofl; :rofl; :angel;
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Quote; I am very disapppointed by the audacity of KICKSTART trying to imply I am not telling the truth.
She has made fun of my situation in the past & later denied it.
She has not been telling the truth about another matter either.
Kristina quit while you are ahead , before i really DO start to speak my mind . I have had the good decency to say i will not post replies to your posts in the future as i find them so far out there ! So please revert from directing the attention to me and by doing that manage to divert the many questions asked of you . I can expect many on the forums from abroad to take you at your word as they dont have any first hand knowledge of the NHS but YOU forget , i do !!!! This is my last word on the subject and any other subject you write about !
My efforts to exchange experiences with other patients
have been ridiculed, manipulated and bullied here on IHD.
I am very shocked that KICKSTART tries to imply I am not telling the truth.
Why should I not tell the truth? I came to IHD to exchange experiences with other ESRF-patients
& I believe it is most important to tell the truth. Life is too short & ESRF shows us the fragility of our lives.
Everything I have stated on IHD is true. I have not had any constructive NHS-medical care for over 30 years,
& that is why I suffered cerebral haemorrhages, chronic osteomyelitis, a stroke and now ESRF.
My kidney function is only 10% and I do not receive any NHS-medical care.
I have to pay privately for every bloodtest & I only can afford bloodtests of Creatinine, Urea, Sodium & Potassium
which I decipher myself with the help of the Internet.
An acquaintance of mine, whom I asked for help, had a look at IHD & my posts
& they thought I asked a very valuable question when I tried to find out which NHS-Dialysis-Centre KICKSTART attends,
so that I might have a chance to avoid this horrible NHS-Dialysis-Centre, if & when I need Dialysis myself.
KICKSTART deliberately misconstrued my question, avoided answering & continued to bully me.
This acquaintance of mine told me that cyber-bullies often live a very isolated existence,
they are often avoided by their own family & use the anonymity of the Internet to bully others
& take revenge on other people for the inadequacies of their own existence.
This acquaintance of mine (and yes, they also have problems to receive medical care on the NHS)
thought it odd that Cariad "diagnosed" me & thought I should have a "therapy".
Such a recommendation sounds particularly odd, since Siegmund Freud's
ulterior motives have been so publicly exposed in recent years.
I came to IHD to exchange experiences with other ESRF-patients,
not to be "diagnosed" by people I have never met or seen.
I was informed about cyber-bullies who try to manipulate
& embarrass genuine & vulnerable people on Forums like IHD.
The gift of these bullies is their deviousness which allows them to prosper
& they certainly come into their own by using the anonymity of computers to bully others.
If it is not possible to be an IHD-member without being bullied,
targeted or being ridiculed, then I cannot afford to be a member any longer.
My kidneys only function 10% & I need every possible help to survive
& I certainly must avoid unnecessary aggravation.
This acquaintance of mine thought it odd that no one of the IHD-owners/monitors
stopped KICKSTART bullying me & picking on me over such a long time.
They thought it odd that no one gave me the benefit of the doubt
or at least check-up on my well documented NHS-history.
If it is not possible to be an IHD- member without being bullied,
targeted or being ridiculed, then this is not the site for me.
I need a site where ESRF-patients have a chance to exchange
their honest experiences without any fear of being bullied or ridiculed.
My kidneys only function 10% & I need every possible help to survive
& I need to find a way to receive medical care in my ESRF.
If it is not possible to be an IHD-member without being bullied, then
I would like to donate the $30 which I had already paid for my 2nd year of IHD-Premium-membership
to the excellent work of anti-war activist & Vietnam-veteran Mr. Ron Kovic.
Thank you, Kristina.
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Kristina, I would hope that you stay and continue to ask questions. I wish I could help more. I do think there are many people that could offer some suggestions. I am not familiar with NHS. From reading other threads, I think that you have tried contacting many groups to assist you. You have managed to preserve your kidney function for many years. I hope that you can find some help soon. I may not be able to help you much, but I do offer you moral support.
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I am so sorry you are feeling this is no longer a good place for you to get information.
I wish you would stay anyway and do your best to ignore unhelpful posts. Most of us do our best to provide helpful support and I think we all worry about your health issues. At times, it's not easy to provide useful analysis because we only read part of what's going on in your life. Everyone's life is so much bigger than what is posted on this site. I wish you the best in getting medical support in your future. You have done well for yourself all of these years in trying to stay healthy, but there comes a time when very low functioning kidneys just wear out after straining to work so hard for so many years. It's sounds like that is what you have run up against at this stage of your health issues. Give yourself a pat on the back for lasting this long. I'd say you've done very well. Good luck.
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KICKSTART deliberately misconstrued my question, avoided answering & continued to bully me.
This acquaintance of mine told me that cyber-bullies often live a very isolated existence,
they are often avoided by their own family & use the anonymity of the Internet to bully others
& take revenge on other people for the inadequacies of their own existence.
This acquaintance of mine (and yes, they also have problems to receive medical care on the NHS)
thought it odd that Cariad "diagnosed" me & thought I should have a "therapy".
Such a recommendation sounds particularly odd, since Siegmund Freud's
ulterior motives have been so publicly exposed in recent years.
I came to IHD to exchange experiences with other ESRF-patients,
not to be "diagnosed" by people I have never met or seen.
I was informed about cyber-bullies who try to manipulate
& embarrass genuine & vulnerable people on Forums like IHD.
The gift of these bullies is their deviousness which allows them to prosper
& they certainly come into their own by using the anonymity of computers to bully others.
Kristina, where did I diagnose you and with what? And I must say that I find it the height of hypocrisy that you would say I diagnosed you, and then go on to say Kickstart or I (I cannot tell to whom you are referring in your rambling post) are cyberbullies and that your "acquaintance" gave you a full psychological profile on what that means about our lives. I am entirely certain that I have never met your "acquaintance". It is laughable that you say you do not come to IHD to be diagnosed by people you've never met, then proceed to do that very thing to others.
It is not my job, nor any other member's, to solve your problems for you and take up your cause. I was interested in hearing more about your claims, but you balk at clarification questions. As the daughter of a German/Russian Jew, I personally find it ridiculously offensive that you compare your situation to living under Hitler.
Did it ever occur to you that doctors are people too, and that your attitude toward them could explain a lot about their desire to help you or not?
It is becoming increasingly obvious to me that you do not want suggestions on how to solve your problem, but rather want to use this forum as a soapbox to spew anti-NHS rhetoric. I carefully explained my suggestion that you see a counselor of some sort, but it seems that you will continually find ways to feel victimized and persecuted. Therefore, I also will refrain from offering any further comment or advice to you, and I trust you will show me the same courtesy.
I will close by vehemently renewing my suggestion that you get to a nephrologist and/or A&E immediately.
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Quote from Kristina ; KICKSTART deliberately misconstrued my question, avoided answering & continued to bully me.
This acquaintance of mine told me that cyber-bullies often live a very isolated existence,
they are often avoided by their own family & use the anonymity of the Internet to bully others
& take revenge on other people for the inadequacies of their own existence.
Answer from KICKSTART ; :rofl; ROTFLMAO Analize that !
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Several people suggested help and counciling to Kristina to overcome past experiences. Somethings are hard to get over. I do think that there are cultural differences that I don't understand without knowing her personally. If you read some her posts on other threads she has appealed to advocacy groups. The stroke she had may have made things harder for her to be understood. I would not want to be in her shoes and going through this.
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I am new and after reading this entire thing 2x so I fully understood before I spoke all I have to say is...
:banghead;It is becoming increasingly obvious to me that you do not want suggestions on how to solve your problem, but rather want to use this forum as a soapbox to spew anti-NHS rhetoric
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Lisa.. spot ON. :clap;
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Kickstart get off the floor before you hurt yourself! (ROTFLMAO)
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I'm not too sure that I want to keep feeding the flames of this thread, but I have had a thought about this whole thing which I thought I would share.
Kristina shared the email she sent to Dr. John Agar, who is here in Australia requesting help. I am not sure if she got a response, but the thought came to me the other day that really how could ANY doctor respond to that note, from someone in another country no less, in a serious way? She's given a few scant details about her medical situation, but he does not have access to her history, test results, scans - anything - to make any kind of informed and qualified opinion about her situation. I don't think ANY doctor would want to proffer an opinion on a patient they do not have a full history on - and clearly in Kristina's case there's a LOT to absorb over decades.
I don't know about the whole "cyberbullying" thing - I'm honestly sorry Kristina feels that way - for my point of view I think there's a general feeling of frustration more than anything else. Many people have tried to give constructive suggestions that seem to be ignored in favour of yet another rant about the NHS and it's failures. I think that Kristina needs to focus on her own health - that is paramount - and stressing about events in the past and a fear of poor treatment(which may or may not be justified - I am not in a position to comment on that) - but all this stress is NOT going to help her kidney function and if she's refusing treatment this is even more worrysome. Kristina claims to be doing everything she can to get treatment for her problems, yet she also admits to refusing things like the biposy. At some point you have to take stock of your own decisions - the system can only do so much if you're unwilling to work with it.
Remember these opinions are based all on what Kristina herself has written in various posts - we have no way of knowing the full story though.
I also note Kristina's latest post against KS and Cariad - yet she didn't answer my own polite question about her previous post - I'm still trying to figure out what exactly she meant by this quote:
Richard, why don’t you check-up in Australia?
A group of patients deal with health-care accidents in Australia
I'd really like to know. This is not being a bully - this is an honest and sincere question.
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None of us can truly know what's going on with another person life. I do agree that making one's way through medical problems can be a lonely and frustrating road, and I am not even the patient. We are often highly sensitive to our own sufferings but oblivious to the pain of others. I am hoping I can be kind, understanding, empathetic, compassionate, and be encouraging to others, even when I am dealing with my own challenges. I love you guys.
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Carol: your sentiments are very much appreciated and I thank you for them.
Richard: the Australian group I was referring to is called: “Medical Error Action Group”.
Two weeks ago I talked to a volunteer about my struggles and I showed him the above. He was surprised that some IHD-members thought I needed counselling. He thought I needed a reliable health service much more urgently. He was surprised to read how some IHD-members tried to malign what I said whilst our UK-newspapers can be read everywhere in the world & they regularly report about patients undergoing similar experiences. He agreed that my only chance to receive medical care in my ESRF is to continue my applications for medical help in other European countries, continue to pay for my blood tests here and hope for the best. He agreed that patients with a chronic disease who try hard & do all the right things, are not encouraged or assisted on the NHS anymore.
He understood my concern to be brought to a NHS-hospital in an emergency with my ESRF, because when I was hospitalized at St. Thomas Hospital with the stroke I never saw a consultant whilst being there. I was told the consultant was on holiday and because of this I was only seen by a registrar & some students. That is why the medical reason for my stroke and my Systemic Lupus (SLE/MCTD) was never diagnosed in the UK even though St. Thomas Hospital is well known for its Lupus-Clinic.
He understood my concern of being in a NHS hospital with my current ESRF & not being seen by a consultant.
He assured me that it is normal practice to save money (as St. Thomas Hospital did) by stating the patient suffered “parathaesiae” and not a stroke. Doing this, stroke-rehabilitation does not need to be provided on the NHS. I told him I did not understand that so many millions are spent every year on NHS-health care & he said that the money often does not reach patient-care & gets often swallowed up by administration etc.
He also came across that NHS-GP’s treat patients with chronic diseases badly to make sure they won’t come back again and that is why I was unable to be seen by a NHS-GP for over six years now.
He understood that with my kidneys only functioning 10% I might be able to travel for health care, but I am much too unwell to move. He seemed very honest with me and I believe him because he explained everything in a very logical way.
I expressed my hope that after the election there might be some change, but he thought it very unlikely because NHS-healthcare has not even been mentioned during this election campaign & there might be further cuts and hospital closures etc. He explained everything very logically & I am very grateful because I could not comprehend.
Talking to him has reassured me that the problem is not with me.
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Kristina, many, many people with chronic illnesses...especially ESRD...suffer from anxiety and depression and would benefit greatly from counselling. There is a lot of medical literature on CKD and depression, so much so that this malady is seen as a common side effect of renal disease. So if someone here mentioned couselling as something that might be helpful to you, please do not take that as a personal put-down. I am a bit skeptical of anyone with a medical background who is surprised that such a suggestion was given to you.
I am also skeptical about this volunteer to whom you allude. Who is this person exactly? You seem to have been let down by so many in the medical field that I can't help but wonder about the qualifications and/or motives of this "volunteer". If you trust him, then go ahead and follow his advice and try to get medical help in another EU member nation. The World Health Organization rates France's health care system as the best in the world, so it might be an idea to explore the possibility of treatment there.
While I can understand your frustrations, perhaps your energies (which, I assume, are ever diminishing) are better directed toward getting treatment than toward trying to justify your position regarding the NHS. On the other hand, have you contacted your MP? I write to my congresspeople all the time!
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The best aspect of IHD is that someone can have a rant and a rave without any discriminations. So if someone in our community has a beef with their neph, then let them get it off their chest without fear of contradiction from other members. Once i wrote that I mucked a my friend's holiday as I constantly vomited on a houseboat trip. Someone replied that it was just sea sickness and nothing to do with my renal disease. That hurt. For the record, I just love my neph and trust him completely.
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She's back ???? What prompted that i wonder?
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kristina, my apologies if you have posted this information in this thread (I've reread it all and couldn't find the answer), but why do you not have a GP? Oddly enough, HMOs in the US (and I have an HMO, so I know this to be true) work in much the same way as the NHS in that you go through a primary care provider (your GP) to access specialists (consultants). Your GP should be able to help you find a nephrologist with whom you can work.
I understand that we all need to rant without fear of retribution on IHD...fewer people rant more than I do. But even I recognize that for the most part, IHDers are pro-active people and want to help a fellow member sort out a problem. Kristina's difficulties stem from much more than a neph she doesn't get on with, and we recognize that ranting on IHD might make her feel better for a while, but not in any way that is truly worthwhile. The bottom line is that she needs treatment, feels she is not getting it, and we're trying to help her find an answer to that. And while we are all discussing the pros and cons of the NHS, our fellow IHDer is probably getting sicker and sicker.
My neph is a human Eeyore.
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So you've found a friend who supports your point of view.. that's great, but I don't see how it really helps your struggle. You've still not really addressed the core issues, to me anyway, of why you won't accept a biopsy and things like that which would only (surely!) help them to help YOU.
I hope you can get better treatment. It still seems odd that our other UK residents do get specialist care. It might not be great (I am thinking of poor KICKSTART here) but it does seem that things to (eventually) happen under the NHS yet you claim to be left out in the dark with no support? I wonder how much of that is to do with your refusal to co-operate with things like getting a biopsy. As I wrote a few months back it's very hard for them to help you within the confines of the system if you won't let them do some of the things they want.....
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What an interesting study of the Pro and Cons, interpretations, misinterpretation, communications, compassion and personalities. Yes, I actually do read some topics from start to endings.
Only a few rare Souls will understand 'why' I do so.
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What an interesting study of the Pro and Cons, interpretations, misinterpretation, communications, compassion and personalities. Yes, I actually do read some topics from start to endings.
Only a few rare Souls will understand 'why' I do so.
Hello talker,
I have noticed that you have specialized in taking up old - and in some cases mercifully forgotten - posts of IHD-members like myself
and I would like to tell you now that I do not appreciate your action because it hurts me very much.
I refer to my post: "How do nephrologists treat kidney patients" from 1. March 2010, almost 6 years ago.
Being pre-dialysis in 2010 was an extremely hard time for me to struggle through and it is not nice to experience now
that another IHD-member (yourself) re-heats these hurtful experiences of mine and throws them at me again after all these years.
Fortunately I have had a chance to move on but I would very much appreciate if you can refrain from re-heating such hurtful experiences of mine in the future.
Your cooperation in this matter would be very much appreciated.
Kristina.
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Kristina,
I really don't believe that talker meant to 'throw' anything in your face. Only that the thread was long and convoluted and never had a resolution posted.
Somehow you have managed to overcome a terrible situation and move on. Others may learn something from you but the thread simply died off.
I am sure that most are glad that you are managing and are still with us today.
Take Care,
Charlie B53
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Kristina,
I really don't believe that talker meant to 'throw' anything in your face. Only that the thread was long and convoluted and never had a resolution posted.
Somehow you have managed to overcome a terrible situation and move on. Others may learn something from you but the thread simply died off.
I am sure that most are glad that you are managing and are still with us today.
Take Care,
Charlie B53
Hello Charlie, I have read your thoughts with great dismay and I am very disappointed that - as an IHD-moderator and as a gentleman - you gave ”talker” the benefit of a doubt – but unfortunately not to me ... and I still wonder why these traumatic experiences of mine should be of any interest to “talker”, unless there is some sad sensational curiosity behind it all?
And furthermore: Why should “talker” be allowed to pick on me? Please bear in mind that this is already the second time that “talker” has taken up one of my ancient threads ...
... But why? After all, “talker” does not appear to suffer from a very rare inherited variation of SLE/MCTD etc. ... and “talker” does not appear to have come across any hazardous life-dangerous problems with medics either... ?
... Nevertheless ... giving the benefit of a doubt etc. : if anybody here happens to suffer - just like myself - from a very rare inherited variation of SLE/MCTD with several medical catastrophies as a result ... and if, during their enormous struggle to survive they happen to come across abusing doctors who, for reasons of their own, try to misuse a humanitarian health-system for their own warped pleasure, all the appropriate authorities should be made aware of this ... and there may be a very positive outcome of it all, if documented evidence can be provided for the investigation ...
... Fortunately, in my case, all the necessary documented evidence was fully provided for the investigators ...
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Dear Kristina please don't be dismayed or disappointed by posts which are trying to be nice and complementary. I'm sure nobody is/out to hurt you, and as Charlie said already are happy you are still here, and left an interesting thread.
Take care my darling, love, Cas
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Interestingly, bringing back 'old threads' was actually part of my early posts.
Wow, six accusations leveled against me for reviving an old post thread.
Here is what I had said, regards that thread:
from: talker on February 14, 2016, 02:39:37 PM
What an interesting study of the Pro and Cons, interpretations, misinterpretation, communications, compassion and personalities. Yes, I actually do read some topics from start to endings.
I've revived many old threads, and some were greeted with 'needed to be brought back, glad you found it' comments.
Am sorry Kristina for any hurt caused, by my reviving an old thread.
There are no hidden undertones or intents to cause pain, to any poster, in any thread.
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Kristina,
I am sorry that you feel that I failed to give you the benefit of doubt. I made it very clear that somehow you did manage to overcome a very difficult situation. Only you know how you accomplished that, and I am sure it took serious determination and effort.
Experiences such as yours can be a learning tool for others that lack willpower and determination.
Unable to know one another except for what little we each post, I somehow sense that past events, or persons has given you cause to feel ????? persecuted??? Is that a good word? Whatever the reasons, no one should be traumatized by others. No excuse. Such experiences have lasting effects causing much ?? suspicion? distrust of others motives? History can't or shouldn't ever be forgotten or we may be doomed to repeat it. How you manage to overcome situations, and fears, those are the commendable traits that you have accomplished. You have chosen to keep those accomplishments to yourself. That is your choice and do not let anyone force you do do, or say, anything that you are not comfortable with.
Take Care,
Charlie B53
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It is unfortunate that this particular thread was the one chosen to be resurrected as it was a particularly painful discussion which became somewhat personal.
Kristina, you know that you should feel incredibly proud of yourself for sticking to your guns and for doing what it took to find specialists who were actually able to help you. I am so grateful that you are now getting the good treatment that you (and we all of us) deserve. Well done!!! :2thumbsup;
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Many thanks again Cassandra for your kind encouragement and thank you talker for apologizing, because re-heating this thread did hurt very much and brought back the trauma my husband and I went through at that time... and thank you Charlie for “ironing out” an oncoming feeling of discomfort and last but not least, many thanks MooseMom for continuing to be such a good friend. It is very heart-warming ! ...
... Yes, it is true, my husband and I went through a very long and extremely difficult battle at that time and despite the very good outcome, I don’t really feel proud about the fact that we both so stubbornly had to stick to our guns until a very good result was assured... and I am very relieved that against all the odds I came out of this battle still very much alive and I have certainly received very good medical treatment ever since.
... "It" all was finally sorted out, when someone “very high up” in the administration became curious about all the noise my husband and I were constantly making and they investigated not only me but also my husband and realized, that we both enjoyed a good reputation, we both enjoyed very promising careers and, despite my debilitating chronic diseases and medical disasters, I had already achieved a very good reputation in my profession with many exhibitions etc. ... and then, all of a sudden and due to medical negligence I suffered - at a very young age - a debilitating stroke and my whole life was suddenly put on halt for a very long time to come, and the only help I had was my husband who diligently read through all available stroke-rehabilitation-books in an effort to help me and without his help I would not have had any chance to rehabilitate from the stroke ... When all these factors were irrefutably established, the investigation began in earnest ... and it brought very good results from then on ...
... But ... this battle took lots of our time and lots of our strength... but there again, it had to be done and there was no other choice ... Of course, it would have been wonderful if my husband and I could have been spared this painful and long-winded battle, but the outcome was a very good one and it was certainly worth it...
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Kristina,
I just saw the recent posts in passing and couldn't help reading the whole thread from the beginning. All I can say to you is THANK YOU for posting your experiences, thoughts and feelings about your past medical encounters. I am truly sorry for what you have suffered and have learnt a lot from your thread about the reality of medical trauma. You are so lucky to have your wonderful husband who has supported you throughout this long arduous ordeal. Many patients just don't prevail in the face of serious medical mistakes and hospitals have a lot of resources devoted to protecting themselves from complaints and legal action. Being isolated, disbelieved & dismissed is part and parcel of the trauma any patient will experience unfortunately. I am so glad that you have finally found justice and also glad to hear how so much better you are now sounding in your messages. You actually give hope to others in ways that empty words of reassurance cannot ever do. I can't help but admire you for your tenacity and fighting spirit over such a long period of time. Best wishes to you in the future and thank you again.
:flower;
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I agree with Athena, every word.
And I still maintain that you AND YOUR HUSBAND should feel proud!!
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Kristina, I spent almost 40 years as a UNIX system admin. During that time I was a observer or A participant in what we referred to as the religious wars, there were several all obscure or techy the biggest was the OSI versus TCP. Now what made that so bad and so funny was OSI was never fully implemented but the fanatics who supported OSI would point out every perceived problem with a TCP choice for a system. It was terrifying how the OSI profits would attack anyone who proposed a TCP solution. Flame wars abounded even saw a fist fight once. However I learned on religious issues to be a non combatant. Because if people divide on two solutions some times the matter becomes more significant then it should. During those days I choose what would work on the system I was designing. I also put a package at the end of every design explaining with the time frame requirements we could not depend on vapor ware, cut down on the arguments. What I am saying is you knew what you were talking about, it became what looked like a religious war and you stood your ground. Good for you. Lots of respect.
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Kristina, You should never 'feel bad' about doing what you HAD TO DO in order to get the medical treatment you need. If youodid not 'stick to your guns' and have such a supportive Husband, I'm afraid you would have been another casualty of this insidious disease.
You have set an example for others that are currently being oppressed by the system, that they too need to stand up and be counted.
I don't remember who once said, "Never let the Bastards get you down."
Keep right on Taking Care,
Charlie B53
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Kristine hi,
If you ever need me to punch somebody out for you let me know ,
Your the best ,thanks for being my friend.
Blake n
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Many thanks Athena, MooseMom, Michael Murphy, Charlie B53 and Blake nighsonger for your heart-warming thoughts and encouragement, it is very much appreciated !
... Sometimes I was wondering if there could have been any other way to sort it all out ...? ... Perhaps not ...
...Well ...the main perpetrator has been made redundant and cannot misuse the trust of vulnerable patients any longer and the others were being observed...
(... whatever that may mean...).
... I do hope, that no other person has to go through anything like this, but, if by any chance it is unavoidable, I am here to help ...
Best wishes from Kristina. :grouphug;
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What I am saying is you knew what you were talking about, it became what looked like a religious war and you stood your ground. Good for you. Lots of respect.
Hello again Charlie,
...This is a most interesting observation you have mentioned here and with this observation you have certainly "hit the nail on the head", so to speak ... Mind you, at that time it was still very early days and the problem as such did not really "come out" as loud and obvious as it is often being noticed these days. But nevertheless, that was exactly the problem and, as a young female with a University education and a very happy marriage, I certainly did not inspire any charitable medical compassion in a male doctor, whose religious background is one where females are not even considered as worthy human beings...
... But I must say, that at that time I rather FELT this problem instinctively and therefore I could only be led by my instinct ... But all the same, it was good luck that someone “very high up” in the administration (where this particular religious angle had not yet "infiltrated" ...) became curious about all the noise my husband and I were constantly making and eventually truly investigated and sorted it all out...
Many thanks again Charlie and ... that was very well observed !
Kind regards from Kristina.
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Kristina,
It always feels like there could have been a better way, post fact. That is inevitable. Most people don't survive - you did. That's something to keep in mind.
I sometimes think that the best way for us to protect ourselves (as patients who are always vulnerable to medical mistakes) is to record and even video tape each & every encounter we have with every aspect of the medical profession. That way, there isn't this horrible "he-said, she-said" scenario to contend with afterwards that always dis-empowers the patient. If people became aware that everything is recorded, that may avert a lot of untoward and inappropriate behaviour? That seems to work in crime prevention for example. Just a thought anyway. (Personally, I'd hate to know that I am being recorded).
Just one suggestion, I don't know if it might be helpful or not. But have you ever considered writing a book about your experience? You have excellent writing skills and so much knowledge and insight into this problem.
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Thanks again for your kind thoughts Athena and also many thanks for your kind suggestions.
Actually, the evidence needed to prove my case came along, after I had applied to see my medical-file under the “Freedom of Information Act”. Of course, my medical file was thoroughly “combed through” before being given to me, but since it was such a huge, enormous file, mistakes were being made and some incriminating GP/doctors-letters “slipped through the net” like i.e. some GP-letters which had been sent to specialists and written in such a dismissive, nasty manner, that it off-put every specialist from the very start and “inspired” them not to bother and not to try and explain my symptoms and/or look for a diagnosis, when my husband and I consulted with them... Locating those terrible GP/doctor-letters and having them in our hands made us to send copies of all these letters plus our written complaint to all the relevant authorities and from then on life was made much easier, especially after the real investigation finally “got under way”... and after all this I was finally sent to a true specialist (with a truly encouraging medical letter asking for a diagnosis) and after many medical tests, blood-tests etc. I was finally diagnosed with SLE/MCTD and that explained not only my symptoms, but also my terrible health history... And since my genetic mother died shortly after my birth, my diagnosis also explained the most possible reason as to why my mother died so early in her life and it also explained the fact, that I most possibly had inherited SLE/MCTD from her...
Thanks again and also thanks for the kind suggestion that I could write a book, I shall be thinking of it...
Best wishes from Kristina. :grouphug;
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People learn from these public posts old or new. That is why we don't delete them due to age. Maybe someone in the future will really need to read this post and YES add to it. It is ALL good.
Rerun, Admin. :flower;
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People learn from these public posts old or new. That is why we don't delete them due to age. Maybe someone in the future will really need to read this post and YES add to it. It is ALL good.
Rerun, Admin. :flower;
Thank you Rerun for your kind thoughts which are very true indeed and very much appreciated.
... Another point about these traumatic experiences, worthy to be mentioned here, is the fact, that even after I was diagnosed with SLE/MCTD and my symptoms and health-history finally had a name and an explanation etc., it still took me many, many years to overcome the terrible trauma I had to endure in an effort to get there ... and ... even after the diagnosis came along, it was still impossible for me to succeed in forgetting these past traumatic experiences and "get on with it" just like that, because that would have been completely impossible ... And that was the reason why I consulted for so many years with top private specialists and a top private GP and paid for all medical consultations privately ... until the day I finally felt ready to face doctors & specialists on the National Health Service (NHS) again...
... Mind you, in an effort to afford it all, my husband and I had to cut down very seriously on many other things ...
With kind regards from Kristina. :grouphug;
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Kristina,
Somehow I get the feeling that you still harbor a small amount of shame (?) or resentment, for being a victim of an oppressive bureaucracy that regularly shuffles patients in and out without any feeling of responsibility.
You are NOT to blame. You have done nothing wrong. Resentment may be the more difficult emotion to over-come. I don't want to go all Biblical as I'm not sure of my own Religion, much less yours. But if I am correct most every Religion shows us that it is better to forgive those that do us wrong...... I'm not so sure if this is even an allowed topic as so many people can get offended at the slightest mention of Religion. I know that I believe, and I am sure that you have your beliefs. So we are not that much different, even with obvious other differences in lives and cultures, we still have common ground we can always fall back upon.
Revival of this thread must have been painful, but your decision to tell us how you managed to over-come your mistreatment has given others so much Hope, they they may be able to speak out when the medical system becomes so discouraging to them.
It took a tremendous amount of courage for you and your Husband to show the system that you were right. And again, in deciding to tell us, that again showed us a tremendous amount of courage, making the decision to write about it, then again actually posting it here in an open forum. You have shown courage and determination that many only hope to ever have.
You should be Proud of all that you have accomplished. You may not feel it yet, but we here at IHD Thank You for your courage.
Hopefully soon you will believe I am serious, you really have done some great things, for yourself. and for all of us here at IHD, and for those to come after us.
Stay Strong,
Take Care,
Charlie B53
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Thank you, Charlie for your kind and honest thoughts and many thanks also for your clever observation and understanding.
You are quite right; it might come over as some variation of "shame". But, to be honest, it is rather an embarrassment for not realizing much earlier, that in a complete humanitarian-benevolent health system like the NHS in England sooner or later some medical "bad apples" would find their way and “slink in” to exploit this humanitarian medical system for their own, unbenevolent strategies ...
... And then confusion sets in, because it is extremely difficult – as a non-medical patient - to figure out, what is actually going on ... and then, all of a sudden a realization sets in, when it becomes obvious, that some medics are actually not who we thought they were ... and then, within a very short time we quickly "grow up" and feel very strongly, that, in order to survive, we have to train ourselves to become extremely observant, semi-medical and quick-thinking ...
... And then finally, everything becomes even more confusing, because we begin to realize, how complicated life and survival as a patient can be ... :grouphug;