Brian:
"Just come back from chelation therapy clinic where I sat next to a racing driver who was told he would have to have a triple bypass 20 years ago. He elected to pay for chelation and is still racing. Total cost of 20 years chelation probably a fraction of that of bypass surgery".
xrn:
Brian, the following URL points to a page (from April 2006) that list many of the problems that would encourage me to be cautious about chelation therapy. I wont gainsay the fact that a number of individuals may have found benefits but the short double-blind trials that I have read about have not been able to produce any evidence to show a positive effect... in the case of either atherosclerosis or arteriosclerosis.
[http://www.quackwatch.org/01QuackeryRelatedTopics/chelation.html]
More telling is the latest recommendation from the American Heart Association (February 21st 2007) reproduced at the URL below...
[http://www.americanheart.org/presenter.jhtml?identifier=4493]
This advice states, inter alia, "Up to now, there have been no adequate, controlled, published scientific studies using currently approved scientific methodology to support this therapy for cardiovascular disease. The United States Food and Drug Administration (FDA), the National Institutes of Health (NIH) and the American College of Cardiology all agree with the American Heart Association on this point".
The article goes on to state that a new study that is a placebo-controlled, double-blind, multi-centre study and will include 2,372 participants. Recruitment to the study began in 2003 and there are links on the page to help inform people. I would want to wait until the conclusive results were known, before embarking on a relatively untried method of treatment for any specific condition.
Hope this helps. :)
xrn
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Making sense out of nonsense - very long post
70 posts
• Page 2 of 4 • 1, 2, 3, 4
by Brian C. » Wed Feb 21, 2007 4:35 am
Hello xrn. Chelation therapy has certainly helped me over the years. As I mentioned, it has resulted in reduction of plaque,particularly at the brachial sites. I've gone back for more treatment after my 8 years of relying on aggressive lipid lowering intervention which resulted in slight deterioration in my two unblocked coronary arteries. It is not a panacea - it certainly cannot fully eliminate plaque since it only removes the calcium - but my consultant endocrinologist now has around 20 years of experience using the technique and is pleased that he has been able to help many patients avoid surgery in that time.
I'm a little surprised that you refer to Quackwatch, do you believe the site contributors to be wholly free of Big Pharma influence? (nudge, nudge, wink, wink, say no more Squire)
Surgeons don't like it either, not good for business
Brian.
I'm a little surprised that you refer to Quackwatch, do you believe the site contributors to be wholly free of Big Pharma influence? (nudge, nudge, wink, wink, say no more Squire)
Surgeons don't like it either, not good for business
Brian.
- Brian C.
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by Biologist » Wed Feb 21, 2007 10:55 am
I read something recently that led me to conclude that QuackWatch is likely a bought-and-paid-for, wholly owned subsidiary of Big Pharma. The site owner (a retired psychiatrist, I believe) was set up and ratted out by an "undercover guy" from the "nutriceutical industry" (i.e., vitamins and supplements industry).
If I get a chance I will hyperlink to an article here before long if I can find it again.
Biologist
If I get a chance I will hyperlink to an article here before long if I can find it again.
Biologist
- Biologist
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- Joined: Sun Jan 14, 2007 4:25 pm
by adec » Wed Feb 21, 2007 2:32 pm
I find chelation therapy fascinating, but would only go as far to supplement with Alpha Lipoic Acid (which also goes without FDA approval, or any major studies or clinical trials.) There are just to many questions and not enough answers.
But actually, I hope we can stay on point (statins, CoQ10, underreported symptoms, whistle-blowing etc.) and not dilute the original message/dialog, or the underlying purpose and service of this forum. I personally take each and every of these statin-related issues, and the unfortunate victims of statins, as serious as a heart attack. :)
But actually, I hope we can stay on point (statins, CoQ10, underreported symptoms, whistle-blowing etc.) and not dilute the original message/dialog, or the underlying purpose and service of this forum. I personally take each and every of these statin-related issues, and the unfortunate victims of statins, as serious as a heart attack. :)
- adec
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by Biologist » Wed Feb 21, 2007 3:46 pm
I was researching Vitamin C on Google and found this URL which discusses "an attack" on Linus Pauling (third and fouth hyperlinks):
[http://www.quantium.plus.com/lr/lr50.htm#Repsonse%20to%20Attack%20on%20Linus%20Pauling]
The part written by John Hammell, Political Coordinator of the Life Extension Foundation, is where I found the "undercover" stuff -- him posing as a college student.
Just now I read from the following which is not very flattering about Barrett, but also has a warning that the info is "in dispute":
[http://en.wikipedia.org/wiki/Stephen_Barrett]
No doubt much of the quackery on his site is quackery. But a lot of it is probably not. He is constantly accused (or proven) to be blatantly biased and he does not evaluate any mainstream medicine by his own admission. That may be just kind of convenient for him, and nothing more. Who knows?
I don't know enough about chelation therapy to have an opinion, but would not be much affected by what the QuackWatch site had to say about it. It is always safe to knock stuff that is not mainstream -- whether the author knows what he's talking about or not.
Biologist
[http://www.quantium.plus.com/lr/lr50.htm#Repsonse%20to%20Attack%20on%20Linus%20Pauling]
The part written by John Hammell, Political Coordinator of the Life Extension Foundation, is where I found the "undercover" stuff -- him posing as a college student.
Just now I read from the following which is not very flattering about Barrett, but also has a warning that the info is "in dispute":
[http://en.wikipedia.org/wiki/Stephen_Barrett]
No doubt much of the quackery on his site is quackery. But a lot of it is probably not. He is constantly accused (or proven) to be blatantly biased and he does not evaluate any mainstream medicine by his own admission. That may be just kind of convenient for him, and nothing more. Who knows?
I don't know enough about chelation therapy to have an opinion, but would not be much affected by what the QuackWatch site had to say about it. It is always safe to knock stuff that is not mainstream -- whether the author knows what he's talking about or not.
Biologist
- Biologist
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- Joined: Sun Jan 14, 2007 4:25 pm
by cjbrooksjc » Wed Feb 21, 2007 9:48 pm
Biologist: Fascinating stuff! And not just the Pauling excerpts.
Thanks,
Brooks
Thanks,
Brooks
- cjbrooksjc
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- Location: Texas
by xrn » Thu Feb 22, 2007 12:23 am
Brian:
Chelation therapy has certainly helped me over the years.
xrn:
Hello Brian. It's good to learn of your positive experience.
Brian:
It is not a panacea - it certainly cannot fully eliminate plaque since it only removes the calcium - but my consultant endocrinologist now has around 20 years of experience using the technique and is pleased that he has been able to help many patients avoid surgery in that time.
xrn:
This paragraph encapsulates one particular problem... rather well. Many of the tenets of medical treatment have been developed over long periods of time. The medical profession, en masse, is a conservative organisation at its best. Progression from a treatment that has become established as best clinical practice, and is widely accepted as such by the medical profession, will not give way to novel treatments or beliefs without a considerable body of peer-reviewed research to underpin and support the rationale for change.
With so little evidence (in the approved format) for the initiation and maintenance of chelation therapy, it is very difficult (read this as 'unwise' and frequently inimical to any particular medical career) for the conscientious medical practititioner to 'experiment' on his/her patients, without censure from professional colleagues. Although new notions about various treatments are acceptable discussion fodder, implementing untested and theoretical treatments is deprecated (rightly so, in my view) and discouraged.
The application of all potentially good treatments, has to be subjected to rigorous scientific evaluation and the subsequent publication in a peer-reviewed journal is the first step to gaining acceptance of any new treatment proposition, that departs from pre-existing established standards of treatment. Needless to say, this can be a very time-consuming process
Consulting clinicians (in the UK) are responsible for their own clinical judgement and if they choose to use treatments that have not been subjected to thorough research and appropriately refereed publication, they are out on a limb when it eventually goes wrong. The medical protection societies will not protect practitioners who choose to ignore the currently accepted treatment options.
Every treatment will not suit every person and a small percentage of treatment instances will *always* go wrong. One hopes that the experience will be restricted to the treatment just not working as intended, or at all, but with drug therapies... there are often serious unwanted effects. Without good clinical evidence (this does not include "I have helped many people with this condition so the method must be good" back of a serviette type of analysis) to support treatment rationale, any medical practitioner can find themselves in the invidious position of being doomed.
In the UK, you only have to recall the recent example of the professor who claimed that one instance of cot death in any family was very suspicious and two cot deaths in one family were plainly murder. Many innocent women were jailed on the whim of that particular madman, who came to believe in his own omnipotence and failed to read or accept the work of other clinicians. The UK medical profession is littered with examples of the 'great and good' falling prey to their own hubris.
Brian:
I'm a little surprised that you refer to Quackwatch, do you believe the site contributors to be wholly free of Big Pharma influence? (nudge, nudge, wink, wink, say no more Squire)
Surgeons don't like it either, not good for business
xrn:
I have not made myself clear. I don't necessarily support an organisation because I refer to it. Speculating which influences may temper the words of an organisation is frequently futile and often little more than guesswork... which you can be sure I will have no truck with. It is my experience that debate is best carried out from a base of being informed and all of the concepts (from both sides of a debate) ought to be open to examination, when any discussion takes place. Even the disagreeable notions should be tendered for examination so that the choices are not based on sterile discussions, where only favourable points are considered. Notwithstanding the fact that the forum members here have already been damaged by statins, it should still be possible to argue the case from a disinterested perspective because that will always carry more weight with the yet to be convinced medical practitioners.
I was hoping to stimulate a wide-ranging debate on the relative merits of all factors that have been used, on both sides of the argument for and against statin use. Dissection of the rationale would have yielded appropriately referenced articles and papers and a clearly indexed repository of information pertaining to the argument could have been initiated. I am willing to donate some personal server space to such a project. I don't see much in the way of an easy introduction to the subject for those who wish to be informed.
My use of the words "More telling" when referring to the recommendations of the American Heart Association, served to illustrate the amount of weight I had placed on the words of Quackwatch. It was a form of mental shorthand and I was being lazy in not explaining my reasons for posting the Quackwatch URL, for which I apologise. Bereft of the visual and auditory cues that follow normal conversation, I had forgotten how easily words over the internet can sometimes not carry the intended meanings of the authors.
Kind regards,
xrn
Chelation therapy has certainly helped me over the years.
xrn:
Hello Brian. It's good to learn of your positive experience.
Brian:
It is not a panacea - it certainly cannot fully eliminate plaque since it only removes the calcium - but my consultant endocrinologist now has around 20 years of experience using the technique and is pleased that he has been able to help many patients avoid surgery in that time.
xrn:
This paragraph encapsulates one particular problem... rather well. Many of the tenets of medical treatment have been developed over long periods of time. The medical profession, en masse, is a conservative organisation at its best. Progression from a treatment that has become established as best clinical practice, and is widely accepted as such by the medical profession, will not give way to novel treatments or beliefs without a considerable body of peer-reviewed research to underpin and support the rationale for change.
With so little evidence (in the approved format) for the initiation and maintenance of chelation therapy, it is very difficult (read this as 'unwise' and frequently inimical to any particular medical career) for the conscientious medical practititioner to 'experiment' on his/her patients, without censure from professional colleagues. Although new notions about various treatments are acceptable discussion fodder, implementing untested and theoretical treatments is deprecated (rightly so, in my view) and discouraged.
The application of all potentially good treatments, has to be subjected to rigorous scientific evaluation and the subsequent publication in a peer-reviewed journal is the first step to gaining acceptance of any new treatment proposition, that departs from pre-existing established standards of treatment. Needless to say, this can be a very time-consuming process
Consulting clinicians (in the UK) are responsible for their own clinical judgement and if they choose to use treatments that have not been subjected to thorough research and appropriately refereed publication, they are out on a limb when it eventually goes wrong. The medical protection societies will not protect practitioners who choose to ignore the currently accepted treatment options.
Every treatment will not suit every person and a small percentage of treatment instances will *always* go wrong. One hopes that the experience will be restricted to the treatment just not working as intended, or at all, but with drug therapies... there are often serious unwanted effects. Without good clinical evidence (this does not include "I have helped many people with this condition so the method must be good" back of a serviette type of analysis) to support treatment rationale, any medical practitioner can find themselves in the invidious position of being doomed.
In the UK, you only have to recall the recent example of the professor who claimed that one instance of cot death in any family was very suspicious and two cot deaths in one family were plainly murder. Many innocent women were jailed on the whim of that particular madman, who came to believe in his own omnipotence and failed to read or accept the work of other clinicians. The UK medical profession is littered with examples of the 'great and good' falling prey to their own hubris.
Brian:
I'm a little surprised that you refer to Quackwatch, do you believe the site contributors to be wholly free of Big Pharma influence? (nudge, nudge, wink, wink, say no more Squire)
Surgeons don't like it either, not good for business
xrn:
I have not made myself clear. I don't necessarily support an organisation because I refer to it. Speculating which influences may temper the words of an organisation is frequently futile and often little more than guesswork... which you can be sure I will have no truck with. It is my experience that debate is best carried out from a base of being informed and all of the concepts (from both sides of a debate) ought to be open to examination, when any discussion takes place. Even the disagreeable notions should be tendered for examination so that the choices are not based on sterile discussions, where only favourable points are considered. Notwithstanding the fact that the forum members here have already been damaged by statins, it should still be possible to argue the case from a disinterested perspective because that will always carry more weight with the yet to be convinced medical practitioners.
I was hoping to stimulate a wide-ranging debate on the relative merits of all factors that have been used, on both sides of the argument for and against statin use. Dissection of the rationale would have yielded appropriately referenced articles and papers and a clearly indexed repository of information pertaining to the argument could have been initiated. I am willing to donate some personal server space to such a project. I don't see much in the way of an easy introduction to the subject for those who wish to be informed.
My use of the words "More telling" when referring to the recommendations of the American Heart Association, served to illustrate the amount of weight I had placed on the words of Quackwatch. It was a form of mental shorthand and I was being lazy in not explaining my reasons for posting the Quackwatch URL, for which I apologise. Bereft of the visual and auditory cues that follow normal conversation, I had forgotten how easily words over the internet can sometimes not carry the intended meanings of the authors.
Kind regards,
xrn
- xrn
- Posts: 244
- Joined: Thu Dec 28, 2006 7:19 am
- Location: Bedfordshire UK
by Brian C. » Thu Feb 22, 2007 8:27 am
[quote]
I was hoping to stimulate a wide-ranging debate on the relative merits of all factors that have been used, on both sides of the argument for and against statin use. Dissection of the rationale would have yielded appropriately referenced articles and papers and a clearly indexed repository of information pertaining to the argument could have been initiated. I am willing to donate some personal server space to such a project. I don't see much in the way of an easy introduction to the subject for those who wish to be informed.
xrn[/quote]
That's a very laudable aim xrn. It's a particular concern of mine that those of us diagnosed with FH are enabled to (a) understand our condition in context of the debate and (b) determine the the degree to which we can sensibly free ourselves from statin dependency. Of course this is of little relevance to the vast majority of Spacedoc Forum visitors, hence my half-joking suggestion of a "1 in 500 Club Corner" to Fran. Also my sharing of my personal treatment experience is hopefully of interest to any "club members" like Paul who visit here. I would be willing to contribute what information I can regarding FH to your project if you consider this appropriate.
BTW, have you read Dr Kendrick's book that was published last month? It is the most up-to-date source for layperson and professional (I have given copies to both my doctors) alike. A serious subject presented in an engaging manner.
Brian.[/quote]
I was hoping to stimulate a wide-ranging debate on the relative merits of all factors that have been used, on both sides of the argument for and against statin use. Dissection of the rationale would have yielded appropriately referenced articles and papers and a clearly indexed repository of information pertaining to the argument could have been initiated. I am willing to donate some personal server space to such a project. I don't see much in the way of an easy introduction to the subject for those who wish to be informed.
xrn[/quote]
That's a very laudable aim xrn. It's a particular concern of mine that those of us diagnosed with FH are enabled to (a) understand our condition in context of the debate and (b) determine the the degree to which we can sensibly free ourselves from statin dependency. Of course this is of little relevance to the vast majority of Spacedoc Forum visitors, hence my half-joking suggestion of a "1 in 500 Club Corner" to Fran. Also my sharing of my personal treatment experience is hopefully of interest to any "club members" like Paul who visit here. I would be willing to contribute what information I can regarding FH to your project if you consider this appropriate.
BTW, have you read Dr Kendrick's book that was published last month? It is the most up-to-date source for layperson and professional (I have given copies to both my doctors) alike. A serious subject presented in an engaging manner.
Brian.[/quote]
- Brian C.
- Posts: 683
- Joined: Tue Oct 24, 2006 7:00 am
- Location: Ongar, UK
by xrn » Fri Feb 23, 2007 11:31 pm
Brian:
That's a very laudable aim xrn. It's a particular concern of mine that those of us diagnosed with FH are enabled to (a) understand our condition in context of the debate and (b) determine the the degree to which we can sensibly free ourselves from statin dependency. Of course this is of little relevance to the vast majority of Spacedoc Forum visitors, hence my half-joking suggestion of a "1 in 500 Club Corner" to Fran. Also my sharing of my personal treatment experience is hopefully of interest to any "club members" like Paul who visit here. I would be willing to contribute what information I can regarding FH to your project if you consider this appropriate.
xrn:
Thanks, Brian. Since almost dipping my toes into the cesspool that is statin therapy, I have been depressed by the findings from my own cursory research of the subject. I will have this matter given suitable air-time and publicity because the drug companies are being more than a little arrogant in this matter. My first target is the Department of Health. It beggars belief that somewhere, a person in government has decided what will be good enough for the people of the UK, who are unwell and possibly suffering from multiple medical conditions... without reading any of the evidence that shows that the widespread prescribing of statins and their easy availability over the counter, are huge mistakes.
Brian:
BTW, have you read Dr Kendrick's book that was published last month? It is the most up-to-date source for layperson and professional (I have given copies to both my doctors) alike. A serious subject presented in an engaging manner.
xrn:
I had not (until today) I ordered it from Amazon yesterday, after reading your post. (thank you for the reminder) It arrived this morning and I was unable to put the book down today. It is a cogent and compelling look at what I had been uncovering in my own small review of the state of statin therapy... and it underpins precisely the issues lay behind my letters to the minister for public health. The book also had the advantage of being a humourous read while covering huge amounts of ground. It is admirable how easy Dr Kendrick has made a very complicated subject, for the lay person, and I would never have attempted such a feat. Now I can say 'yes' I have read the book from cover to cover. (I have posted a short review on the Amazon site under my handle (xrn) and I expect that to filter through their moderation system in a day or two. The book has also has prompted me to write to Dr Kendrick, to open a dialogue about some more tightly focussed campaigning. (..................................) Watch this space.
Thank you for your kind offer of help. I am currently refining my views of just what sort of web-based project I can usefully host, while my server guru updates things to be much faster and hardens the server for a more public use than it gets at the moment. *****All suggestions for a useful web-based service for statin users are welcomed.***** I have considered the value of offering a composite of experiences that are document here.
By that I mean something that can be used as say... a searchable reference work for instance, where the users can enter a symptom that they are suffering from. The symptom alone is unlikely to be of much value in helping to refine a search but if there was a relational database, with choices that guided a live search... so the idea is to have an active front end that would continously modify the search terms on the fly, it may bring the user to a thorough and demystified description of what is happening in their body and then go on to tell the user precisely what they can do to ameliorate their symptoms.
My experience of the way that reassurance works is this. If you can tell people what is actually happening to them and go on to tell them what will happen in the next week or so, as long as events follow the predicted pathway, the person is reassured. I think it is essential to do something about the wall of scepticism that the complaining statin user meets... the sense of helpless isolation and ostracism is not a good place to be when they are trying to gather sufficient strength to assist in their own recovery.
Additionally, I would want to collect and collate all documented instances of research that expose the flaws in statin therapy (including newly produced research data) so that the user could download both a complete list of references to present to their medical practitioner and the relevant .pdf files of the full text, complete with highlighted passages. That repository would have to guide the user to the most relevant documents, which I envisdage could be liniked to their initial searching criteria being held for the duration of the vist and used to keep their visit focussed on relevant (for their particular case) issues.
Needless to say, I know practically nothing of coding a website database, of the type that I think would be crucial to the service that I want to provide, however, I do know of a relative who has all of the skills I need so it may just be a question of selling the idea to him. [/ xrn crosses fingers] It should not be an impossible task to set up something that is useable within a few months.
[/xrn goes away to think]
regards,
xrn
That's a very laudable aim xrn. It's a particular concern of mine that those of us diagnosed with FH are enabled to (a) understand our condition in context of the debate and (b) determine the the degree to which we can sensibly free ourselves from statin dependency. Of course this is of little relevance to the vast majority of Spacedoc Forum visitors, hence my half-joking suggestion of a "1 in 500 Club Corner" to Fran. Also my sharing of my personal treatment experience is hopefully of interest to any "club members" like Paul who visit here. I would be willing to contribute what information I can regarding FH to your project if you consider this appropriate.
xrn:
Thanks, Brian. Since almost dipping my toes into the cesspool that is statin therapy, I have been depressed by the findings from my own cursory research of the subject. I will have this matter given suitable air-time and publicity because the drug companies are being more than a little arrogant in this matter. My first target is the Department of Health. It beggars belief that somewhere, a person in government has decided what will be good enough for the people of the UK, who are unwell and possibly suffering from multiple medical conditions... without reading any of the evidence that shows that the widespread prescribing of statins and their easy availability over the counter, are huge mistakes.
Brian:
BTW, have you read Dr Kendrick's book that was published last month? It is the most up-to-date source for layperson and professional (I have given copies to both my doctors) alike. A serious subject presented in an engaging manner.
xrn:
I had not (until today) I ordered it from Amazon yesterday, after reading your post. (thank you for the reminder) It arrived this morning and I was unable to put the book down today. It is a cogent and compelling look at what I had been uncovering in my own small review of the state of statin therapy... and it underpins precisely the issues lay behind my letters to the minister for public health. The book also had the advantage of being a humourous read while covering huge amounts of ground. It is admirable how easy Dr Kendrick has made a very complicated subject, for the lay person, and I would never have attempted such a feat. Now I can say 'yes' I have read the book from cover to cover. (I have posted a short review on the Amazon site under my handle (xrn) and I expect that to filter through their moderation system in a day or two. The book has also has prompted me to write to Dr Kendrick, to open a dialogue about some more tightly focussed campaigning. (..................................) Watch this space.
Thank you for your kind offer of help. I am currently refining my views of just what sort of web-based project I can usefully host, while my server guru updates things to be much faster and hardens the server for a more public use than it gets at the moment. *****All suggestions for a useful web-based service for statin users are welcomed.***** I have considered the value of offering a composite of experiences that are document here.
By that I mean something that can be used as say... a searchable reference work for instance, where the users can enter a symptom that they are suffering from. The symptom alone is unlikely to be of much value in helping to refine a search but if there was a relational database, with choices that guided a live search... so the idea is to have an active front end that would continously modify the search terms on the fly, it may bring the user to a thorough and demystified description of what is happening in their body and then go on to tell the user precisely what they can do to ameliorate their symptoms.
My experience of the way that reassurance works is this. If you can tell people what is actually happening to them and go on to tell them what will happen in the next week or so, as long as events follow the predicted pathway, the person is reassured. I think it is essential to do something about the wall of scepticism that the complaining statin user meets... the sense of helpless isolation and ostracism is not a good place to be when they are trying to gather sufficient strength to assist in their own recovery.
Additionally, I would want to collect and collate all documented instances of research that expose the flaws in statin therapy (including newly produced research data) so that the user could download both a complete list of references to present to their medical practitioner and the relevant .pdf files of the full text, complete with highlighted passages. That repository would have to guide the user to the most relevant documents, which I envisdage could be liniked to their initial searching criteria being held for the duration of the vist and used to keep their visit focussed on relevant (for their particular case) issues.
Needless to say, I know practically nothing of coding a website database, of the type that I think would be crucial to the service that I want to provide, however, I do know of a relative who has all of the skills I need so it may just be a question of selling the idea to him. [/ xrn crosses fingers] It should not be an impossible task to set up something that is useable within a few months.
[/xrn goes away to think]
regards,
xrn
- xrn
- Posts: 244
- Joined: Thu Dec 28, 2006 7:19 am
- Location: Bedfordshire UK
by xrn » Sat Feb 24, 2007 4:05 am
[quote="Brian C."]I'll be happy to assist in any non-technical way
Brian.[/quote]
Good to know... I am not so far from Ongar (about 46 miles) so as soon as I have put some flesh on my current ideas and looked at the feasibility, I may yet come calling.
xrn
Brian.[/quote]
Good to know... I am not so far from Ongar (about 46 miles) so as soon as I have put some flesh on my current ideas and looked at the feasibility, I may yet come calling.
xrn
- xrn
- Posts: 244
- Joined: Thu Dec 28, 2006 7:19 am
- Location: Bedfordshire UK
Reply under the UK Freedom of Information Act 2000
by xrn » Mon Mar 19, 2007 8:30 pm
I have just received a reply from the UK Department of Health which I had sought after invoking the Freedom of Information Act 2000. It was not really useful other than to inform me that the civil servant I had been dealing with had decided to tell me to go away.
I reproduce my reply below. For calrity I have kept it with this particular thread so that earlier communications can be read easily. I have changed names for Initials but other than that, there are no significant alterations. comments from those whoa re following this saga are, of course, welcome.
Dear Ms F,
I would like to register a formal complaint with you anent the handling of my original correspondence. It is now evident from the two desultory scraps of information that were supplied to me under the Freedom of Information Act 2000 (FOI Act 2000) that the dialogue that had taken place between Mr A and Mr T was extremely limited in scope.
It is difficult for me to follow what must have been the usual chain of events that followed an enquiry from a UK citizen, without knowing a little about how work is assigned and carried out within the customer service department of the Department of Health (DoH). Please forgive me if I have not fully grasped the implications carried by documentation which was sent to me by Mr F, under the terms of the FOI Act 2000.
As far as I can discern, my enquiries were not passed to the Minister for Public Health, despite my requests and in the face of the issues affecting the safety and good health of the public while notwithstanding that my own health and safety were also issues that required addressing. My first e-mail message contained a wealth of information that Mr A apparently chose to ignore. He had given me that impression because he did not address the conclusions reached by many members of the medical profession, which I had taken the time and trouble to provide to him with very clear reference citations. He certainly did not address any of my specific questions in my second e-mail message to him.
Mr A's reply had suggested to me that he was not seeking advice from any of his senior civil service colleagues before answering my list of concerns. Sadly, the information which I had requested, under the FOI Act 2000, was supplied as simple text files and the date has not been appended to either of the supplied documents, that were apparently internal communications from Mr A to Mr T, so it is impossible for me to put the communications into any useful chronological sequence. Any attempt by me to assess the chronology of events is likely to be pure guesswork.
The content of the text file: DE179454... videlicet
"Hi A,
Here the case that prompted my clarication request on the statin line
S"
This communication suggests to me that Mr A was referring the second e-mail communication from me to him, to a third party, Mr T. It appears to be a referral on foot of Mr A requesting clarification (I have assumed that his spelling mistake was intended to read as 'clarification') about the DoH policy for statin prescriptions, but without a full and frank explanation of Mr A's conduct, I have little choice but to assume much.
The content of the text file: 182440... videlicet
"Hello A,
I'm set to tell him to go away (in the nicest possible terms) but would be
grateful if you could give it a quick glance.
Cheers
S"
This text message from Mr A to Mr T, appears to be a reply to the clarification that was requested from Mr T and was mentioned in DE17945. It has the appearance of Mr A having made the decision to tell me to "go away" and requesting that Mr T give the reply to me, a "quick glance". The tenor is one that suggests that Mr A saw no fault with his conduct and apparently saw no difficulty in getting Mr T to agree to the content of the newly authored "go away" communique.
I have no preconceived notions about the working relationship between the two individuals, that are named in the text documents which were sent to me under the FOI Act 2000. They appear to be on good terms with each other and I see nothing of the master/servant relationship in Mr A's communications with Mr T.
Curiously, I also see nothing of Mr T's communications to Mr A, with respect to this issue and the lack of dates notwithstanding, I wish to know why this documentation has not been not provided to me, within the very clear terms of the FOI Act 2000, which I have reluctantly had to invoke, in order to understand why my concerns were not dealt with appropriately.
I appreciate that there is a method to complain about the information supplied under the FOI Act 2000 and I will request an internal review from Ms J if I do not get to see all of the information that I have requested. It is clear that Mr T must have communicated with Mr A and that communication is relevant to my request. My question for you at this juncture is to ask you why the requested information has not been supplied?
The complaint that falls within your remit is the matter of your customer services employee, Mr A. He appeared to be arrogating the executive powers of the Minister of State for Public Health, to himself. I had guessed as much when reading his first reply and I had re-stated my concerns to him in my reply to his response to my concerns. I had specifically requested that my concerns be addressed to the Minister of State for Public Health.
It is my belief that the Minister is the only person who has the executive power to make adjustments to policies and to act in the best interests of the nation. Mr A had given me the impression, in his response to my second e-mail message, that he was being more than obstructive and what is worse, is that he seemed to be actively engaged in preventing my e-mail communications from reaching the appropriate person.
I don't hold Mr A responsible for his being ignorant of a subject that he clearly had never studied, to judge by his parroting the ill-considered conventional wisdom on statins. His crime was not to realise that his lack of knowledge was getting in the way of any objective dialogue. Not knowing is not a problem... not knowing when you don't know is a well-defined problem.
I gave most of my working life over to the work of the National Health Service and as a clinical specialist, I fully understand how national policies concerning public health are developed. I do not need to be lectured on what NICE are intending to do 6 months from now and neither do I need to be pointed to research that is deeply flawed and scientifically poor. I fully expect any civil servant, who is working within the customer services department of the DoH, to recognise when they are out of their depth and to ask for advice from a senior member of the service.
Mr A went as far as stating how the customer service centre was an integral part of the DoH and he referred to a "close liaison with Ministers on a daily basis". there has been no evidence provided to me that the issues which I had raised were discussed with the relevant minister. I now accept that fact on its face and I am left wondering why a serious issue has not been addressed to the relevant minister.
It is depressing to discover that the much vaunted, and oft touted, 'open government' that we are supposed to enjoy in the UK, has no actual basis in reality. That a concerned individual can have their serious concerns lightly brushed aside by a minor civil servant acting as customer services operative (who has somehow managed to assume far more power than he is entitled to) is a sad reflection of the sorry state that the NHS has fallen into. The constant micro-managing of precious resources by people with a little or no understanding of what it takes to deliver health care to the nation, is deeply distressing.
I wish to know why my concerns were never addressed to CF. I wish to know by what mechanism my concerns came to be disregarded. I wish to know by whose authority I was told to go away. I wish to know under which piece of legislation the citizenry of the UK are to be dealt with in such a cavalier fashion, by one of the servants of the people.
Yours sincerely,
I reproduce my reply below. For calrity I have kept it with this particular thread so that earlier communications can be read easily. I have changed names for Initials but other than that, there are no significant alterations. comments from those whoa re following this saga are, of course, welcome.
Dear Ms F,
I would like to register a formal complaint with you anent the handling of my original correspondence. It is now evident from the two desultory scraps of information that were supplied to me under the Freedom of Information Act 2000 (FOI Act 2000) that the dialogue that had taken place between Mr A and Mr T was extremely limited in scope.
It is difficult for me to follow what must have been the usual chain of events that followed an enquiry from a UK citizen, without knowing a little about how work is assigned and carried out within the customer service department of the Department of Health (DoH). Please forgive me if I have not fully grasped the implications carried by documentation which was sent to me by Mr F, under the terms of the FOI Act 2000.
As far as I can discern, my enquiries were not passed to the Minister for Public Health, despite my requests and in the face of the issues affecting the safety and good health of the public while notwithstanding that my own health and safety were also issues that required addressing. My first e-mail message contained a wealth of information that Mr A apparently chose to ignore. He had given me that impression because he did not address the conclusions reached by many members of the medical profession, which I had taken the time and trouble to provide to him with very clear reference citations. He certainly did not address any of my specific questions in my second e-mail message to him.
Mr A's reply had suggested to me that he was not seeking advice from any of his senior civil service colleagues before answering my list of concerns. Sadly, the information which I had requested, under the FOI Act 2000, was supplied as simple text files and the date has not been appended to either of the supplied documents, that were apparently internal communications from Mr A to Mr T, so it is impossible for me to put the communications into any useful chronological sequence. Any attempt by me to assess the chronology of events is likely to be pure guesswork.
The content of the text file: DE179454... videlicet
"Hi A,
Here the case that prompted my clarication request on the statin line
S"
This communication suggests to me that Mr A was referring the second e-mail communication from me to him, to a third party, Mr T. It appears to be a referral on foot of Mr A requesting clarification (I have assumed that his spelling mistake was intended to read as 'clarification') about the DoH policy for statin prescriptions, but without a full and frank explanation of Mr A's conduct, I have little choice but to assume much.
The content of the text file: 182440... videlicet
"Hello A,
I'm set to tell him to go away (in the nicest possible terms) but would be
grateful if you could give it a quick glance.
Cheers
S"
This text message from Mr A to Mr T, appears to be a reply to the clarification that was requested from Mr T and was mentioned in DE17945. It has the appearance of Mr A having made the decision to tell me to "go away" and requesting that Mr T give the reply to me, a "quick glance". The tenor is one that suggests that Mr A saw no fault with his conduct and apparently saw no difficulty in getting Mr T to agree to the content of the newly authored "go away" communique.
I have no preconceived notions about the working relationship between the two individuals, that are named in the text documents which were sent to me under the FOI Act 2000. They appear to be on good terms with each other and I see nothing of the master/servant relationship in Mr A's communications with Mr T.
Curiously, I also see nothing of Mr T's communications to Mr A, with respect to this issue and the lack of dates notwithstanding, I wish to know why this documentation has not been not provided to me, within the very clear terms of the FOI Act 2000, which I have reluctantly had to invoke, in order to understand why my concerns were not dealt with appropriately.
I appreciate that there is a method to complain about the information supplied under the FOI Act 2000 and I will request an internal review from Ms J if I do not get to see all of the information that I have requested. It is clear that Mr T must have communicated with Mr A and that communication is relevant to my request. My question for you at this juncture is to ask you why the requested information has not been supplied?
The complaint that falls within your remit is the matter of your customer services employee, Mr A. He appeared to be arrogating the executive powers of the Minister of State for Public Health, to himself. I had guessed as much when reading his first reply and I had re-stated my concerns to him in my reply to his response to my concerns. I had specifically requested that my concerns be addressed to the Minister of State for Public Health.
It is my belief that the Minister is the only person who has the executive power to make adjustments to policies and to act in the best interests of the nation. Mr A had given me the impression, in his response to my second e-mail message, that he was being more than obstructive and what is worse, is that he seemed to be actively engaged in preventing my e-mail communications from reaching the appropriate person.
I don't hold Mr A responsible for his being ignorant of a subject that he clearly had never studied, to judge by his parroting the ill-considered conventional wisdom on statins. His crime was not to realise that his lack of knowledge was getting in the way of any objective dialogue. Not knowing is not a problem... not knowing when you don't know is a well-defined problem.
I gave most of my working life over to the work of the National Health Service and as a clinical specialist, I fully understand how national policies concerning public health are developed. I do not need to be lectured on what NICE are intending to do 6 months from now and neither do I need to be pointed to research that is deeply flawed and scientifically poor. I fully expect any civil servant, who is working within the customer services department of the DoH, to recognise when they are out of their depth and to ask for advice from a senior member of the service.
Mr A went as far as stating how the customer service centre was an integral part of the DoH and he referred to a "close liaison with Ministers on a daily basis". there has been no evidence provided to me that the issues which I had raised were discussed with the relevant minister. I now accept that fact on its face and I am left wondering why a serious issue has not been addressed to the relevant minister.
It is depressing to discover that the much vaunted, and oft touted, 'open government' that we are supposed to enjoy in the UK, has no actual basis in reality. That a concerned individual can have their serious concerns lightly brushed aside by a minor civil servant acting as customer services operative (who has somehow managed to assume far more power than he is entitled to) is a sad reflection of the sorry state that the NHS has fallen into. The constant micro-managing of precious resources by people with a little or no understanding of what it takes to deliver health care to the nation, is deeply distressing.
I wish to know why my concerns were never addressed to CF. I wish to know by what mechanism my concerns came to be disregarded. I wish to know by whose authority I was told to go away. I wish to know under which piece of legislation the citizenry of the UK are to be dealt with in such a cavalier fashion, by one of the servants of the people.
Yours sincerely,
- xrn
- Posts: 244
- Joined: Thu Dec 28, 2006 7:19 am
- Location: Bedfordshire UK
by cjbrooksjc » Mon Mar 19, 2007 11:35 pm
xrn: Good effort! Here's hoping you get a meaningful reply, but I smell hubris and the stale aroma of ensconsed administrivia. UK or US they are much the same collection of self-confident gerbils.
Here we call it the Peter principle: People are left in the promotion cycle until they reach their utmost level of incompetence; there they are allowed to remain, happily mishandling events. And, with 9 to 5 hours, a nice retirement package, good job benefits, and job security, why wouldn't they be happy...
Best of Luck,
Brooks
no...I don't know who Peter was.
Here we call it the Peter principle: People are left in the promotion cycle until they reach their utmost level of incompetence; there they are allowed to remain, happily mishandling events. And, with 9 to 5 hours, a nice retirement package, good job benefits, and job security, why wouldn't they be happy...
Best of Luck,
Brooks
no...I don't know who Peter was.
- cjbrooksjc
- Posts: 1188
- Joined: Wed Dec 13, 2006 11:28 am
- Location: Texas
note to xrn
by imanut » Wed Mar 21, 2007 1:11 pm
First off, I've been a reader of this forum for a period of time now. Never joined as my story is quite similar to others. Onset was so vague, and so weird that I just blew it off. Finally the docs decided I was becoming paralyzed and needed a cervical fusion. Then that was called off, and they took tests for 10 months, and finally an expert decided that I had CIDP. This, after inquiring of 4 doctors whether the zocor had any bearing on the exact issues that I had mirroring the black box warning. Finally, after quitting zocor, cold turkey, I could walk again. However, like others, the docs totally denounced any connection to zocor--hence, according to the docs, I have CIDP.
However, my reason for finally joining, not to rehash an old diatribe about the symptoms, nor the stupidity of doctors, was simply to express my admiration for the talent, time, and lucidity of argument that "xrn" was able to express in her letters to the UK government. Quite impressive ! I would have sworn you were an English major instead of a medical person. I fear, though, that the UK is about as permeable as the US government, and the doctor profession in rooting out issues. Even here, where a class action lawsuit was brought againt Lipitor (?)-----in the paper one day---------------and never heard about again.
Again, my compliments "xrn", a huge thank you,-------------
gn
However, my reason for finally joining, not to rehash an old diatribe about the symptoms, nor the stupidity of doctors, was simply to express my admiration for the talent, time, and lucidity of argument that "xrn" was able to express in her letters to the UK government. Quite impressive ! I would have sworn you were an English major instead of a medical person. I fear, though, that the UK is about as permeable as the US government, and the doctor profession in rooting out issues. Even here, where a class action lawsuit was brought againt Lipitor (?)-----in the paper one day---------------and never heard about again.
Again, my compliments "xrn", a huge thank you,-------------
gn
- imanut
- Posts: 14
- Joined: Tue Mar 20, 2007 5:16 pm
by xrn » Thu Mar 22, 2007 5:44 am
Brooks:
Good effort! Here's hoping you get a meaningful reply, but I smell hubris and the stale aroma of ensconsed administrivia. UK or US they are much the same collection of self-confident gerbils.
xrn:
Hmmm... I suspect that this comment is an unjust slighting of gerbils.
There is no doubt that I am currently getting the standard civil servant handoff but it wont last. It is just one of the many hoops to jump through before my concerns are taken seriously.
What is now happening is that the dialogue is being dragged into a wider arena and the evidence that the government were informed about the dangers of statins gets harder to bury, with every passing e-mail. Ultimately, after a few more exchanges like these, there will be a sheaf of documentation to send to an interested newspaper or TV company.
As I have stated elsewhere, this is a long haul and I do not expect any rapid solutions. I am big enough and ugly enough to make as much civilised noise as the issue will take and, with any luck, my experiences will encourage others to make a start on making some civilised noise to their respective government departments. In the final analysis, I want the World Health Organisation to take the matter on and produce the data that we believe will become obvious, with the proviso that it is truly impartial research that is carried out.
Brooks:
Here we call it the Peter principle: People are left in the promotion cycle until they reach their utmost level of incompetence; there they are allowed to remain, happily mishandling events. And, with 9 to 5 hours, a nice retirement package, good job benefits, and job security, why wouldn't they be happy...
Best of Luck,
Brooks
no...I don't know who Peter was.
xrn:
I suppose many people are in a position that they did not want to occupy but are having to man because their bosses told them to do it. If we had less of a bullying culture and treated people as human beings rather than as units of work, it could change. I believe that I have had a pre-digested answer from a minor civil servant, who is in no position to deviate from his standard operational procedures.
One could argue that he is merely a minion (and he is destined to remain so) because he is incapable of independent analysis, thought and action. I presume that when my original e-mail crossed his desk, he was just required to put it into the box labelled "for standard reply number 347" and I have serious doubts that he even read it. He probably would not have been expecting my reply to that sorry standard screed and when he got it, he had asked a friend to look at his reply (when he had already decided to tell me to go away) so that he could later point to some notional internal consultation, if he happened to find himself in the soft and smelly. (as has proven to be the case... but I don't accept that he was being prescient; rather that his conduct is derived from a 'cover your a$$' kind of mentality. As an aside... I just cannot work with people who will not be self-responsible for their own bahaviour.
I have been informed that the erring civil servant has been "spoken to", presumably about his attitude not being consonant with the ethos of the Depart of Health. I think that is complete and utter nonsense. He should not be censured... because he has no authority to change any of his department's working practices - he is just an expendable drone and we all know that responsibility without authority is the most useless form of responsibility.
What should have happened (in my opinion) is that his section head should have been keel-hauled for overseeing lazy practices that stifle creativity and are always inimical to good work (and in this case) the stated ethos of the customer services department of a huge and very significant government department. I also object to being called a 'customer' because people who become ill do not go out and shop for their particular medical condition (save only by the most tenuous of connections that will often be completely bereft of a moral base) so ill people cannot be called customers in my book.
Kind regards,
xrn
Good effort! Here's hoping you get a meaningful reply, but I smell hubris and the stale aroma of ensconsed administrivia. UK or US they are much the same collection of self-confident gerbils.
xrn:
Hmmm... I suspect that this comment is an unjust slighting of gerbils.
There is no doubt that I am currently getting the standard civil servant handoff but it wont last. It is just one of the many hoops to jump through before my concerns are taken seriously.
What is now happening is that the dialogue is being dragged into a wider arena and the evidence that the government were informed about the dangers of statins gets harder to bury, with every passing e-mail. Ultimately, after a few more exchanges like these, there will be a sheaf of documentation to send to an interested newspaper or TV company.
As I have stated elsewhere, this is a long haul and I do not expect any rapid solutions. I am big enough and ugly enough to make as much civilised noise as the issue will take and, with any luck, my experiences will encourage others to make a start on making some civilised noise to their respective government departments. In the final analysis, I want the World Health Organisation to take the matter on and produce the data that we believe will become obvious, with the proviso that it is truly impartial research that is carried out.
Brooks:
Here we call it the Peter principle: People are left in the promotion cycle until they reach their utmost level of incompetence; there they are allowed to remain, happily mishandling events. And, with 9 to 5 hours, a nice retirement package, good job benefits, and job security, why wouldn't they be happy...
Best of Luck,
Brooks
no...I don't know who Peter was.
xrn:
I suppose many people are in a position that they did not want to occupy but are having to man because their bosses told them to do it. If we had less of a bullying culture and treated people as human beings rather than as units of work, it could change. I believe that I have had a pre-digested answer from a minor civil servant, who is in no position to deviate from his standard operational procedures.
One could argue that he is merely a minion (and he is destined to remain so) because he is incapable of independent analysis, thought and action. I presume that when my original e-mail crossed his desk, he was just required to put it into the box labelled "for standard reply number 347" and I have serious doubts that he even read it. He probably would not have been expecting my reply to that sorry standard screed and when he got it, he had asked a friend to look at his reply (when he had already decided to tell me to go away) so that he could later point to some notional internal consultation, if he happened to find himself in the soft and smelly. (as has proven to be the case... but I don't accept that he was being prescient; rather that his conduct is derived from a 'cover your a$$' kind of mentality. As an aside... I just cannot work with people who will not be self-responsible for their own bahaviour.
I have been informed that the erring civil servant has been "spoken to", presumably about his attitude not being consonant with the ethos of the Depart of Health. I think that is complete and utter nonsense. He should not be censured... because he has no authority to change any of his department's working practices - he is just an expendable drone and we all know that responsibility without authority is the most useless form of responsibility.
What should have happened (in my opinion) is that his section head should have been keel-hauled for overseeing lazy practices that stifle creativity and are always inimical to good work (and in this case) the stated ethos of the customer services department of a huge and very significant government department. I also object to being called a 'customer' because people who become ill do not go out and shop for their particular medical condition (save only by the most tenuous of connections that will often be completely bereft of a moral base) so ill people cannot be called customers in my book.
Kind regards,
xrn
- xrn
- Posts: 244
- Joined: Thu Dec 28, 2006 7:19 am
- Location: Bedfordshire UK
Re: note to xrn
by xrn » Thu Mar 22, 2007 6:11 am
imanut:
However, my reason for finally joining, not to rehash an old diatribe about the symptoms, nor the stupidity of doctors, was simply to express my admiration for the talent, time, and lucidity of argument that "xrn" was able to express in ***[her]*** letters to the UK government.
xrn:
Hello, imanut. I suspect that my wife would want to know what I am doing dressing up in her clothes and pretending to be female, when I know that she is not around.
imanut:
Quite impressive ! I would have sworn you were an English major instead of a medical person.
xrn:
Thanks for the compliment.
I am not an English major or any other kind of major. I am completely self-taught, which will possibly explain some of my more archaic usages (old books and traditions) I have learned that people don't ever listen to angry rants. I partially blame Microsoftâ„¢ and Wordâ„¢ for a change in today's standards of writing... the constant flagging up of passive/neutral language... as being a grammatical error, has served to create an environment that has fostered language use that is often combative. I am interested in opening a dialogue and if I start using emotionally loaded language, I fear that it will only close the mind of the reader.
imanut:
I fear, though, that the UK is about as permeable as the US government, and the doctor profession in rooting out issues. Even here, where a class action lawsuit was brought againt Lipitor (?)-----in the paper one day---------------and never heard about again.
xrn:
I believe (perhaps naively) both in the rule of law and that civility is the way to open closed doors. I don't want to shout from the rooftops just yet because that will clearly be counterproductive at this early stage in any putative dialogue, which I may eventually get to participate in with the responsible government Minister for Public Health.
I am not surprised that the Lipitor class action suit should fall off the front pages. News relies on fresh stories by the minute and long-running arguments will not be considered (by any right-minded editor) to be news. People will not usually report on lengthy ongoing legal proceedings until a decision has been reached... and then the interest is usually for how much damages were paid and what was the legal rationale behind a particular judgement.
imanut:
Again, my compliments "xrn", a huge thank you,-------------
xrn:
/xrn bows low (should that have been curtseys?)
Kind regards,
xrn
However, my reason for finally joining, not to rehash an old diatribe about the symptoms, nor the stupidity of doctors, was simply to express my admiration for the talent, time, and lucidity of argument that "xrn" was able to express in ***[her]*** letters to the UK government.
xrn:
Hello, imanut. I suspect that my wife would want to know what I am doing dressing up in her clothes and pretending to be female, when I know that she is not around.
imanut:
Quite impressive ! I would have sworn you were an English major instead of a medical person.
xrn:
Thanks for the compliment.
I am not an English major or any other kind of major. I am completely self-taught, which will possibly explain some of my more archaic usages (old books and traditions)
I have learned that people don't ever listen to angry rants. I partially blame Microsoftâ„¢ and Wordâ„¢ for a change in today's standards of writing... the constant flagging up of passive/neutral language... as being a grammatical error, has served to create an environment that has fostered language use that is often combative. I am interested in opening a dialogue and if I start using emotionally loaded language, I fear that it will only close the mind of the reader.
imanut:
I fear, though, that the UK is about as permeable as the US government, and the doctor profession in rooting out issues. Even here, where a class action lawsuit was brought againt Lipitor (?)-----in the paper one day---------------and never heard about again.
xrn:
I believe (perhaps naively) both in the rule of law and that civility is the way to open closed doors. I don't want to shout from the rooftops just yet because that will clearly be counterproductive at this early stage in any putative dialogue, which I may eventually get to participate in with the responsible government Minister for Public Health.
I am not surprised that the Lipitor class action suit should fall off the front pages. News relies on fresh stories by the minute and long-running arguments will not be considered (by any right-minded editor) to be news. People will not usually report on lengthy ongoing legal proceedings until a decision has been reached... and then the interest is usually for how much damages were paid and what was the legal rationale behind a particular judgement.
imanut:
Again, my compliments "xrn", a huge thank you,-------------
xrn:
/xrn bows low (should that have been curtseys?)
Kind regards,
xrn
- xrn
- Posts: 244
- Joined: Thu Dec 28, 2006 7:19 am
- Location: Bedfordshire UK
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