No NHS-medical care in end-stage-renal-failure. Any ideas?

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Kristina
Posts: 10
Joined: Sun Sep 06, 2009 7:40 pm

No NHS-medical care in end-stage-renal-failure. Any ideas?

Post by Kristina »

I am in end-stage-renal-failure. Not yet been medicalloy informed about dialysis/transplant and I am without NHS-GP to go to and without any NHS-specialist.
Last year unsuccessful experiment with Methyl Prednisolone-Infusions followed by 2Rituximab-Infusions causing further MCTD/SLE-flare-up. No treatment offered, not even a 24 hour urine-collection. Privately paid blood-tests show Creatinine 477, Urea 17.5 kidney function ~9-10% without typical uraemia-symptoms. Potassium and Sodium regulated by diet. First kidney failure 1971, biopsy 1972 diagnosed chron. proliferative Glomerulonephritis/Hypertension. Med.History:1971 kidney failure, coma. 1982: two cerebral haemorrhages, two clipped aneurysms.1987 chron. osteomyelitis, 1991: CVA-stroke. 1995: SLE (Lupus), Antiphospholipid Syndrome, Vasculitis, Sicca Syndrome, Sjoegren’s Syndrome, photosensitivity.2003 MCTD. I also suffer from allergies and drug-intolerance. August 2006: Diagnose of end-stage renal failure. No NHS-treatment offered.

Urgent need to see specialist with Medical/Humanitarian/Christian Integrity to stop SLE-flare-up destroying kidneys further.

Medical letter (11. April.2005) from NHS-GP (whom I have not seen for over 5 years because he said no point in me seeing him since he knows nothing about my disease, no other NHS-GP lets me register) states that there is no specialist in MCTD/SLE in the UK to treat me.

Often been referred in the past to NHS-specialists without receiving health care. They just sat and stared at me & my husband, hardly saying a word, not taking BP, no examining, no blood test, no urine test. Waste of time going there, but looks good on paper, showing I WAS SEEN by NHS-specialist. (Complaints to PCT Mr. Waweru, Health Commissioner Ms. Warner, Ombudsman Ms. Abraham, Sir Liam Joseph Donaldson, Lord Warner etc. all complaints been dismissed). Also been sent by NHS-GP's to NHS-specialists/researchers who misused my trust in the NHS and my hope to be treated, for their own medical experiments, without bothering about my medical complaints. Never been treated or helped on the NHS when I needed it most and that is why I suffered cerebral haemorrhages (due to untreated high blood-pressure), chron. osteomyelitis (5 botched-up operations on fractured ankle), a CVA-stroke (due to untreated high blood-pressure) and now end-stage-kidney-failure (due to untreated MCTD/SLE-flare-up). Not yet been medically informed about dialysis, transplant etc.
Such a pity no world-wide organisation in existence to assist patients like myself in end-stage-kidney failure to receive proper medical care.

Been informed on Friday, 5th September 2003 by Sara on her last day of work at my Health Authority (PCT) in London before returning to Australia, that it was well known I was being discriminated against, PCT Chief Executive Paul Haigh knew about it. Sara told me on the telephone it was well known that I was being sent to useless NHS-appointments so that it looked as if I was receiving NHS-health-care but it was known these appointments were of no medical value to me whatsoever. She told me she felt sorry for me.

I am aware that this is a forum for discussion. I am not well enough for discussions at the moment but rather in need of urgent medical care.
Unfortunately had bad experiences with forums when my situation was being made fun of or some people tried to exploid me and my situation as some form of entertainment.

A doctor/specialist with Medical/Humanitarian/Christian Integrity urgently needed to stop my SLE/MCTD-flare-up destroying my kidneys any further or find medical advice where to go from here?

"Helping" organisations,"best NHS-doctors/specialists" unfortunately existent on paper only but not as a reality for me. It seems they only help their own kind and discriminate against others.

No solicitor takes my case.

Is there is a patient understanding and knowing whom I can contact for help, could they please contact me at my e-mail: [email protected]

Thank you.
Jill
Posts: 173
Joined: Fri Feb 27, 2009 12:15 pm
Location: Yorkshire

Post by Jill »

Hi Kristina.
I am sorry to hear of all your problems.
I found your post a little strange, especially when you make the statement that "best NHS doctors/specialists exist only on paper....they only help their own kind..."
I would guess most people who come on here would strongly disagree with you on this one. Most of us wouldn't even be here if it wasn't for the excellent care we receive from the NHS! What did you mean by "their own kind?"
You say you have no GP? You have been registered with one and unless he/she has struck you off their list you should still be registered. A GP is always your first port of call.
I hope you find the help you are looking for.
Jill
kidneytx55
Posts: 7
Joined: Tue Jun 23, 2009 11:40 am

Post by kidneytx55 »

Hi Kristina,

Sorry to hear your having such a tough time.

I'm completely shocked that you cant register with a GP!!! I dont know how they can refuse to take you on as a patient as surely the fact that they are 'general' practitioners means they are not necessarily an expert in any area!!

Although my health issues seem nowhere as complicated or as serious as yours I've had 3 different lots of 'specialists' in the last 5 years (due to moving about so much) and I've never had a problem registering/being referred to any of them. Quite a few members of my husbands family are dr's and when I mentioned this to them about half an hour ago they said they'd never heard anything like this in their lives and that they shouldnt be able to refuse to take you on with out having reasonable justification to do so......

Obviously every GP/hospital is different and the standards will vary from practice to practice so i was just wondering whereabouts you live? There might even be someone else on this site that doesnt live too far away and might know a bit about the services in your area?

At least if you get a gp sorted they could push for a referral to a specialist.....

The other part of your post I thought was interesting was that you and Sara feel you are being discriminated against - what has lead to you feeling like this? have they been nasty/rude in the past?

Hope you get something sorted! :D
JMan
Posts: 3471
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Post by JMan »

I'm very surprised to hear that you have no GP registration, sometimes the system lets you down, it seems that if you are at end stage renal failure dialysis might be the next stage, it can sometimes be unavoidable, but not the end.

I don't know anything about Autoimmune ilnesses per se, but even if you end up in A&E you will be treated if your within the EU .


Best of luck, I hope you get some help from somewhere amonst the crossposts on the web.

J
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
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andie
Posts: 24
Joined: Fri Apr 24, 2009 8:55 pm
Location: United Kingdom

re: local gp

Post by andie »

I hope that I am not just presuming....but are you an EC Citizen resident here as I (as well as others??) can't work out why you don't have a GP??

I do a lot of advocacy work for Portuguese/Brazillian/Angolans here and this link (if it works :? ) shows which local surgeries are accepting patients as really the GP is the 'first step'. I have used this a lot.....

www.nhs.uk/servicedirectories/Pages/serviceSearch.aspx
Thumps
Posts: 1302
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: No NHS-medical care in end-stage-renal-failure. Any idea

Post by Thumps »

If you're an EU citizen there's no reason why you should not be able to register and there are a number of advocacy groups to help if for some reason you are having any difficulty.

I can't help wondering if:
A doctor/specialist with Medical/Humanitarian/Christian Integrity
might need some clarification? All doctors (in my experience) have medical and humanitarian integrity, it goes with the territory, at worst their bedside manner may need work. What does the "Christian" bit refer to in the statement? To my understanding, NHS Doctors aren't permitted to tell their patients their religious affiliation as it doesn't/shouldn't inform their decision-making and is therefore irrelevant.
Kristina
Posts: 10
Joined: Sun Sep 06, 2009 7:40 pm

Post by Kristina »

Thank you for your kind replies.
andie: yes, I am an EC-citizen.
Thumps: advocacy groups? For many years I have tried so many of them, they told me they do not assist anyone with problems on the NHS. PALS cannot help me, told me I had the wrong disease. These experiences made me think advocacy groups help their own kind only and could not care for anyone else.
Thumps: The Hippocratic oath which NHS-doctors once took only applied to those medical institutes of medical education who decided to use this oath. I was never obligatory The Hippocratic oath whilst largely made up of good sound principles also contained a clause which we would call today a loophole. It is not obligatory to take this oath in the UK and it is left to the NHS-doctor’s own moral principles. As the Hippocratic oath is not obligatory, it follows that I might have a chance to survive if I am medically seen by a doctor with Medical/Humanitarian/Christian Integrity because I have read that the NHS was originally created with these principles in mind.
Furthermore, NHS-specialists these days divide their work into two clear areas: firstly research interests (trials, experiments, papers etc) and secondly their clinical treatment of NHS-patients. Today these two areas of interest go hand in hand. Because of my medical history (former medical experiments have left me being very frail, see my medical history above) and rare disease of MCTD/Systemic Lupus, I am not being considered as research-material any longer. Therefore NHS-specialists, even eminent NHS-rheumatologists/nephrologists shy away from my current situation of end-stage-renal-failure caused by an untreated MCTD/Systemic Lupus-flare-up, because I am no positive gain with regard to the two areas of their work and medical experimentation as mentioned above.
Having talked to other female Lupus-patients on the phone, they confessed to me about sexual/psychological/mental abuse conducted by their NHS-GP’s or specialists and I find that very frightening.
From 1995 to 2003 I was registered with a rheumatologist at Charing Cross and he did not even register the decline of my kidney function or anything else for that matter. I was registered there but my health was not taken care of and my husband and I were not invited to ask him any questions. No other NHS-rheumatologist would let me register with them.

On one of my very last NHS-GP-visits over 5 years ago in an emergency, I was told by this NHS-GP that “with a rare disease like yours you are anyone’s game”. He did not bother to take my blood pressure, examine me or find out why my husband brought me to the surgery. The same NHS-Surgery sent me on 11th April 2005 a letter saying that a specialist to treat my Lupus/MCTD cannot be found in the UK. Health Commission & Ombudsman are not bothered that I am without NHS-medical care.
I am in end-stage-renal-failure and I have no NHS-GP/Specialist and no NHS-nephrologist to go to.
My hope is to find a doctor/nephrologist/rheumatologist/GP with Medical/Humanitarian/Christian Integrity because I believe the NHS was first created with these principles in mind. The NHS was originally created to protect vulnerable fragile patients and give them the medical care if and when they needed it.
Are there ways of receiving healthcare within the EU as a European citizen living in England?
How is it in France, Spain, Italy, Germany, is it better? Are there better survival chances in any of the other EU countries? How is it done? Does it cost much money? Are the Human Rights of patients respected?
I would be very grateful if you could let me know how to receive health care in another EU-country, or is it everywhere the same story?

Please consider that I am not well enough to take part in discussions, I urgently need medical care to stop my MCTD/SLE-flare-up destroying my kidneys any further.
Thank you.
MandyV
Posts: 1717
Joined: Mon Apr 10, 2006 10:17 am
Location: Fulham

Post by MandyV »

Kristina - I am not sure that we can help you here, nor that we really understand the problem because you seem to have gone through a number of complaints processes and (I assume) not had any rulings in your favour.

I certainly have never found anything like the issues you have identified and it is clear that with a creatinine of 477 you need help and most likely dialysis. I suggest if you do not have a GP - though it seems that you might, you just believe that they told you that they could not help you - the best options is that you go to an A & E department with your test results and ask them to test your creatinine. If it is anything like that high I am sure that they will put you on the right course of treatment.

My advice (for what it is worth) is to go in and be polite and calm and you will get the best results. For your current situation I would not especially refer to all the history - there is time for that later, you obviously need help now.
haych
Posts: 15
Joined: Mon Sep 10, 2007 10:30 am
Location: uk

Post by haych »

Kristina

Whilst I can't comment about your particular disease what is absolutely clear is your current health situation has put you in a state of despair.

If you don't feel you can talk to a health professional and get a reasonable answer my suggestion would be to talk to someone who can help with the emotions you are going through.

The Samaritans are an excellent organisation who can help on a whole host of situations including health issues.

I hope they help you to find what you're looking for.
Nicky
Posts: 691
Joined: Thu Feb 10, 2005 8:33 pm
Location: Cornwall

Post by Nicky »

Hi,

I can only echo what has already been said. Either a) register with a gp or b) go to an accident and emergency department.
If you are an EU citizen then you are entitled to health care.
If you are in end stage renal failure then in time you will either need a transplant or to go on dialysis without which you will die.

You sounded unhappy about the treatment at Charing Cross Hospital, I can only say that I had dialysis treatment and a transplant there many years ago and they were very helpful and efficient and the renal care was fine. Although having said that - it was in 1992 - so not the most up to date recommendation!

If your creatinine is over 450 as you say then you MUST go and get the treatment you need.

With best wishes
Nicola
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Helen Rambaut
Posts: 745
Joined: Mon Feb 13, 2006 11:34 pm
Location: London

no nhs treatment

Post by Helen Rambaut »

In your post about fish oil supplements you said

"Fortunately at that time I had access to receive medical care and a very experienced Professor in nephrology looked after me."

Did you mean Prof Hugh de Wardener?

Helen
Kristina
Posts: 10
Joined: Sun Sep 06, 2009 7:40 pm

Post by Kristina »

Thanks for your kind thoughts and messages.

Helen: Thanks, but I was never referred to Prof. Dr. Hugh de Wardener. If I would have been referred to him, there might have been a chance to receive proper NHS-medical care & give me a chance to avoid suffering cerebral haemorrhages, chronic osteomyelitis, a CVA-stroke and now end-stage-renal failure.

haigh: The Samaritans cannot give me any practical advice on medical NHS-matters, they cannot advise me how to find a NHS-doctor to assist me in my kidney failure.

Nicky: I needed the Charing Cross Hospital twice for medical help and they let me down very badly.
The first time was when I needed urgent medical help to avoid suffering a stroke, but the nephrologist I saw did not take note of my uncontrolled high blood-pressure which caused my stroke shortly after. I knew I was very unwell and asked for medical help, but this nephrologist did not listen when I told her my symptoms (I learnt later that I suffered ischaemic attacks at that time). Had this nephrologist listened and reacted or checked my blood pressure, my stroke could possibly have been avoided. But she did not, and so I suffered a stroke shortly after.

The second time I felt let down by the Charing Cross Hospital was when I was registered there with a rheumatologist from 1995-2003. He did not medically help or assist me, nor did he take note of my Creatinine climbing up, due to an untreated SLE/MCTD-flare-up which he did not seem to notice either. I wonder if he ever looked at me or my blood tests? I have been trying ever so hard to register with another NHS-rheumatologist, but it seems as if there is a "code" and they don't seem to interfere with each other’s "territory"?

Mandy: I am polite and calm because it is in my nature. A neighbour thought it is my politeness which has “inspired” NHS/GP’s/specialists/doctors to abuse me so badly, because, according to my neighbour, there is no place for dignity, calmness or politeness in an elbow-Darwinist-NHS-world.

The Health-care Commission (Miss Warner), Ombudsman (Ms. Abraham) or my PCT (Mr. Waweru) do not assist or help, they can see nothing wrong that I am in kidney failure without any NHS-medical care.

The Prime Minister has given a fax number to contact, but there is no reply.
To my knowledge there is no office, no organisation, no Charity in the UK to assist me receiving medical care in my end-stage-kidney-failure due to an untreated Lupus/MCTD-flare-up.

Once I phoned my PCT for help, it was Friday, 5th September 2003 and I talked to Sara, who told me it was her last day of work at my PCT before she returned to Australia. Sara said she knew I was being rented out by NHS-GP’s to medical experimenters. Sara also told me she knew I was being sent to useless appointments, so that it looked as if I was being medically cared for under the NHS. Sara said they knew my medical appointments were of no medical value to help me & that PCT-Executive Paul Haigh let it be known I should not be assisted to receive medical care. Sara said she felt very sorry for me.
Helping" organisations," best NHS-doctors/specialists" are not a reality I am aware of. My letters are not answered and that is why it seems they only help their own kind and discriminate against others.

In 2002/2003 I wrote to Sir Liam Joseph Donaldson for help. Through his office I was registered with yet another NHS-GP in my district. But the first thing this NHS-GP told me was that he had no idea how to give me any medical NHS-care, making sure I understood that should not come to the Surgery ever again.
When my husband brought me to this Surgery a little later in an emergency, another NHS-GP working there told us that “with a rare disease like yours you are anyone’s game...”. On 11th April 2005 I received from that Surgery a letter, stating there is no NHS-specialist to be found in the UK to look after me medically. I have not been to this Surgery for many years and there is no way that I would ever enter this Surgery again because I know I would receive further abuse instead of NHS-health-care. I do not comprehend why Sir Liam Joseph Donaldson’s office registered me there?

I am aware that this is a forum for discussion. You might have noticed that I am really not well enough for discussions. From privately paid blood-tests I know that my kidneys only work ~10% now and I need urgent health care because I am very unwell.

Unfortunately I was badly hurt and had bad experiences with some forums where my situation was being made fun of or people seemed to try and exploit me and my situation for some entertainment.

No other NHS-GP in the district lets me register with them.

No solicitor takes my case.

A doctor/specialist with Medical/Humanitarian/Christian Integrity is urgently needed to stop my SLE/MCTD-flare-up destroying my kidneys further, or urgent medical advice where to go from here. Thank you.

Is there is anyone who understands my situation and knows whom I can contact for help? Could they please contact me at: [email protected] Thank you.
MandyV
Posts: 1717
Joined: Mon Apr 10, 2006 10:17 am
Location: Fulham

Post by MandyV »

Kristina - I think both Nicky and I have suggested that you visit A & E if your creatinine is so high. I can only echo Nicky's view of CX (and there are others of us on the Forum who have been treated there) - I have been treated extremely well at CX over many years.

I certainly don't believe that 'there is no place for dignity, calmness or politeness in an elbow-Darwinist-NHS-world' and if people hold that view I am extremely surprised as the vast majority of people I have encountered in the NHS are hard working, dedicated and good at their jobs.

You have been quite clear that you want to find 'A doctor/specialist with Medical/Humanitarian/Christian Integrity is urgently needed to stop my SLE/MCTD-flare-up destroying my kidneys further, or urgent medical advice where to go from here.' which is what we offered in suggesting A & E.

If your renal function is <10% it may well impact your ability to think clearly so I can only suggest yet again that a visit to A & E (in which ever hospital you like, but suggest you go to one at a hospital with renal services) to assess your need for and get access to your choice of RRT (renal replacement therapy) before continuing to search for whatever it is that you feel you need in the longer term.

If you don't think this is the right course of action then I can only wish you luck with however you decide to continue your quest.
amanda in CA
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Joined: Fri Apr 23, 2004 5:14 pm
Location: Georgia, USA

Post by amanda in CA »

Mandy V is right thought. Getting a consultant that you can work with long term is of secondary importance right now. If you cannot get a consulation any other way, then you need to go to A & E.

With regard to GPs. Even if you cannot register with a GP of your choosing, your District Health Authority has to, by law, allocate a GP for you to see. You may not like them but they can open the door to your seeing a consultant. In your case, you actually need referral to two consulants, a nephrologist for the renal failure and a rheumatologist for the SLE/MCD.

I must say that I find it hard to believe that there are not any rheumatologists in the UK capable of treating your SLE/MCD. Rheumatic diseases tend to be treated in a similar way, the prescription of anti-inflammatories (eg steroids) to treat inflammatory flare up. and treatment to manage the symptoms that such flare-ups provoke (for example, splinting of painful joints). It is not rocket science.

One thing that struck me in your last posts was that you comment that you write to consultants and get no response. I am not in the least surpised that you get no response from writing to consultants. I do wonder why you expect that they would, and what you hope to achieve by writing to them. If it is a consultation, that is not the correct procedure for getting one; it is is to get an opinion based on what you have written, no doctor in his right mind will do that because of the legal implications if he should get it wrong.

I must admit that I do not really understand what you mean when you talk about seeking a consultant with Medical/ Christian/ humanitarian integrity - maybe they don't either. Measured on a spectrum of caring, commitment, compassion and empathy, doctors who deal with patients with chronic disorders sit at the extreme end of this spectrum (not to say there aren't a few rogue ones). If they weren't they wouldn't practice in this type of medicine. Let's face it, it isn't the glamour end of medical practice. they can't have the glory of curing someone, they can't give someone a quick fix (like a surgeon) and have to deal daily with patients who are generally well-informed, often challenge what they say, do not put a doctor on a pedestal, and are often not in the best of spirits because of the way that they feel.

Have you considered if your own behaviour is getting in the way of getting productive consulations?
I will readily admit that I have had a few run-ins with doctors in the past and it really didn't achieve a lot, other than I think we both had more mutual respect for each other at the end. Ultimately they are human like the rest of us and will also respond negatively if they are treated negatively.

Maybe you have seen some bad doctors along the way, that doesn't mean
that because of your previous bad experience, that they all are. Maybe your expectations are set too high. Maybe you are sub-consciously hostile because of your past experiences - and that has lead to consultations that are not productive in helping you.

I strongly suggest that you keep any interaction with any doctor that you see (and that includes when you to A & E, succinct and to the point (the doctors simply don't have time to hear about the tough time that you have had in getting the help that you need). In your current situation you really need to separate the christian and humanitarian traits that you seek in a doctor from the medical since at the moment, it is the medical input that you need.

Do be aware that when you go to an A & E department, the doctor that you see first will not be an expert in your problems. These doctors are generally newly-qualified and will bring in a consultant if they deem it necessary.

All I can say to close, is that I hope that you get something sorted out one way or another and wish you all the best.
Kristina
Posts: 10
Joined: Sun Sep 06, 2009 7:40 pm

Post by Kristina »

I envy patients in the USA who have a chance to complain
when they have been abused andmistreated by NHS-GP's/specialists/ NHS-doctors and/or medical staff.
I envy them for the chance to be sorted out because
that gives them a chance to survive and get on with their life.
I envy "dismissed patients" in the USA
for an opportunity & chance to contact
an organization like "dialysisethics" to find support and help.
At least that gives them a chance to survive.
I wish we had an organization like that in England.
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