Making sense out of nonsense - very long post

A forum to discuss personal experiences and share information on statins and other cholesterol lowering drugs.

Postby imanut » Thu Mar 22, 2007 8:37 am

My apologies to you, and from your comments I know you didn't take it personal. If I'd only re-read my post, I would have noticed the assumption.



gn
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Postby xrn » Thu Mar 22, 2007 9:00 am

imanut:
My apologies to you, and from your comments I know you didn't take it personal. If I'd only re-read my post, I would have noticed the assumption.

xrn:
No harm done and I dod not take it asa personal effront. ;) thanks for the apology, even though it was not necessary. The error gave me the opportunity to have a little fun (albeit at your expense) :D

Kind regards,
xrn
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Postby cjbrooksjc » Thu Mar 22, 2007 10:33 am

xrn: I understand the 'Federal' mentality and the bureaucracy(sp?) it engenders, and I expect it to buffer you effectively until an appointed official gets drawn in; it's the nature of the beast (as you kow). An old acquaintence from my business years said to me once: "When a fish stinks, it stinks from the head down!" Here's hoping you get to the 'head' soon. The Yanks are all pulling for you.

Regards,

Brooks
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Postby xrn » Thu Mar 22, 2007 4:48 pm

Brooks:
xrn: I understand the 'Federal' mentality and the bureaucracy(sp?) it engenders, and I expect it to buffer you effectively until an appointed official gets drawn in; it's the nature of the beast (as you kow). An old acquaintence from my business years said to me once: "When a fish stinks, it stinks from the head down!" Here's hoping you get to the 'head' soon. The Yanks are all pulling for you.

Regards,

Brooks

xrn:
Brooks, I am sure you are right. I have only just started to make a fuss. Right now, I have involved two section heads from different perspectives. I intend to raise the issue as a matter urgency with the head of the civil service too. There is no way that I can accept that the work of the civil service is to exclude the public away from commenting on matters germane to the government and the way it deals with the British nation.

I also will be writing to my local MP (a different political colour to the current government) just as soon as I have created enough of a paper audit trail for him to have an accessible route into the issues. He will need something tangible so that he can get his teeth into it. I am considering complaining directly to the office of the prime minister so it is also on my list of things to do. When I judge that I have been buffered enough, I will take the whole shooting match to a national newspaper and the TV.

After that I will take the issue from there... :D

Regards,
xrn
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Postby cjbrooksjc » Thu Mar 22, 2007 10:05 pm

xrn: I certainly appreciate your enthusiasm and applaud your considerable efforts to date. I've heard nothing from my US Senate request and only form responses from the Food and Drug Administration, but it's only been a few weeks. Politically, we can't add our voices to yours, but kick the ant hill anyway, we're behind you in spirit, and will continue the fight here.

Best of Luck!

Brooks
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Postby xrn » Fri Mar 23, 2007 2:06 am

Brooks:
I certainly appreciate your enthusiasm and applaud your considerable efforts to date. I've heard nothing from my US Senate request and only form responses from the Food and Drug Administration, but it's only been a few weeks. Politically, we can't add our voices to yours, but kick the ant hill anyway, we're behind you in spirit, and will continue the fight here.

Best of Luck!

Brooks[/quote]

xrn:
I have only just realised that the petition request, which I had made to the office of the prime minister, recently, was quietly buried without even so much as a nod to me to state that it could not be accepted for whatever reason. I will send them another request in the morning (modified from the previous wide ranging request to something more digestible) and I will give them one final opportunity to act in accordance with the published mechanism. The mendacity of the Blair government is staggering... especially when you consider that many of the players are trained as lawyers and so have no excuse for not understanding the term 'lie'.

I keep wondering why there is all the apparent secrecy and why simple requests for further information all appear to be off-limits to me. I'm a nobody and so my requests should not be getting flagged up (as ignore this request at all costs) for some different action. The Freedom of Information act request was dealt with in a derisory way. I was not given any information that I could not have guessed. The information was not really useable in a court of law, save for the fact it was sent by the DoH to me... as the sum total of all internal discussions relating to my e-mail requests for a dialogue with the responsible government minister.

The influence of the pharmaceutical industry is pervasive and I wonder if the obstruction, that I keep seeing, was derived from how deeply the industry has its claws stuck into health care provision at many different levels. In developed countries, it can play on public fears by creating the lies that are necessary to have every sane adult running to the medicine cabinet. In developing countries I would not put it past the pharmaceutical industry to hold out the possibility of treating major diseases (causing the most deaths) such as malaria or HIV... in return for the state sponsorship of a program that benefits the pharmaceutical industry, in order to gain a false legitimacy for their 'humanitarian' work.

I cannot find it just now but the web site that details the next 20 years of pharmaceutical opportunity for the industry, was a truly frightening thing to behold. There is zero interest in helping humanity and the machine just rolls ever onwards... soaking up cash. If there are populations where 20% of them require a particular drug, then the industry is exhorting its members to find yet more reasons (almost as if the industry is saying find false reasons to its membership) for selling the same drug to the other 80% who do not need it. At this point I am calling 'foul' and blowing the whistle on the game. There is no alternative but to expose the industry at every opportunity; for the money-grabbing charlatan that it is. It is not the global health of humanity that drives the pharmaceutical industry forward but its own global bank balances.

Making huge pots of money out of the sales of essential medications is (just possibly) an acceptable quid pro quo. The privilege of having an exclusive playing field, requires far more commitment, from the industry, to easing the misery of illness, than is obvious from just opening the cash registers of the global drug industry. The pharmaceutical industry is interwoven throughout all of the societies on the planet, in a way that only leads to regular abuses of its position. The time for change is long overdue.

Kind regards,
xrn
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Postby cjbrooksjc » Fri Mar 23, 2007 1:11 pm

xrn: I comisserate with your situation, and, as I said, am pulling for you. The image of dirty dollar diplomacy you raise is frightening and totally disgusting, and, If true, should incite a global inquisition. It's hard not to consider brute force under these circumstances; let's hope it never comes to that. But stocks and pillories, public flogging, branding, these are fitting punishments that we may have dismissed out-of-hand as uncivilized and harsh. Oh, yes, to be honest, considering your Tony Blair review, I must tell you I am a staunch conservative (somewhere just to the left of Louie the 16th); hence... my rather simplistic solution. However, I'm certain, when George Bush left Texas and moved to Washington, D.C., he raised the average I.Q. in both places, and it seems he has thrown a treble hook into Tony Blair as well. There's something about staunch conservatism coupled with stupidity that makes even MY eyes bug out. But, enough politics - give 'em hell, xrn... you know how it goes, right? "Never before in the course of human events have so few...

Regards

Brooks
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Postby xrn » Sun Mar 25, 2007 5:37 am

Brooks:
I comisserate with your situation, and, as I said, am pulling for you.

xrn:
Thanks for the support. :)

Brooks:
The image of dirty dollar diplomacy you raise is frightening and totally disgusting, and, If true, should incite a global inquisition.

xrn:
I believe that it would be within the gift of the World Health Organisation to open the inquisition. I am preparing some questions to address to the WHO and as soon as I have my refusal from the UK's Department of Health, I can escalate the issues.

Brooks:
It's hard not to consider brute force under these circumstances; let's hope it never comes to that. But stocks and pillories, public flogging, branding, these are fitting punishments that we may have dismissed out-of-hand as uncivilized and harsh.

xrn:
Hmmm... I hear you and can empathise with that view. I suspect that the only brute force that will be effective is to remove the right from the pharmaceutical industry (by dint of legislation) to create new compounds. Reduce their business model to one of them being restricted to manufacturing medicinal compounds. All new compounds should derive from clear clinical research.

Brooks:
Oh, yes, to be honest, considering your Tony Blair review, I must tell you I am a staunch conservative (somewhere just to the left of Louie the 16th); hence... my rather simplistic solution. However, I'm certain, when George Bush left Texas and moved to Washington, D.C., he raised the average I.Q. in both places, and it seems he has thrown a treble hook into Tony Blair as well. There's something about staunch conservatism coupled with stupidity that makes even MY eyes bug out.

Ah yes... the dictates of civilisation. Given the damage that has been inflicted by statins, I would feel justified taking a stand against the drug companies, that was further to the right than Attila the Hun. ;) We know that we have to act in a civilised way and that, sadly, has produced more damage to people. It is to be hoped that other people will make a noise too so that our collective voice will become an irresistible roar.

Brooks:
But, enough politics - give 'em hell, xrn... you know how it goes, right? "Never before in the course of human events have so few...

xrn:
One order of hell coming up... did you want the ranch dressing with your order, sir? ;)

Kind regards,
xrn
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Postby adec » Tue Mar 27, 2007 6:34 am

I think we can all make a positive impact by putting all of our heads together on this. And I really wanted to type a thoughtful reply to some of the concerns/questions posed in this thread, and just things that have been ruminating in my head on this issue. I haven't forgotten, and am hoping to get that chance soon.
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Postby xrn » Tue Mar 27, 2007 7:33 pm

I know that working together is going to provide good answers. My fear is that gaining consensus is a difficult proposition when you are 'consulting' across thousand sof miles and many different time-zones. I have no idea how one would set up a conference between minds (a sort of permanent IRC/AIM and doing nothing (while trying to make coherent judgements about what should or could be done in everyone's name) is likely to be an exercise in futility. I am both happy and willing to be proven wrong on this point

I don't know if the people who had produced the e-Petition software would be amenable to assisting with setting up a global ePetition or just a local one in the USA but if you wanted to contact them you could start here... (remove the asterisk before copying the URL.

*http://www.mysociety.org/2006/11/14/no10-petitions-system-goes-live/

adec, I supect that many movements are born of small acts and when enough acts have followed, then a movement with a coherent set of objectives can be given life. Right now, there are many disparate voices to bind together. We know that of the many people, who visit the Spacedoc site, a large number are likely to be affected by statins in some way and therefore we can expect that they will be sympathetic to the objective of the removal of statins from their every waking moment.

I am aware that energy depletion is one possible effect of long-term statin use and I have no problem with people who do not feel that they have enough energy or will to join in the push for better information, honesty, treatment and compensation.

Having one's life completely overturned and disrupted is reason enough to say "I don't feel I can contribute any more" but especially for those people, we have to be strong enough to put their cases for them, if they cannot do it for themselves.

There will be a myriad shades of opinion and we will learn that some will want safer statins while yet more will want no statins and there will some who would rather see statin compounds containing Q10 and... not forgetting the extremists like myself, who will settle for nothing less than the divorce of the pharmaceutical industry from all clinical research. :D

Galvanising people into action is relatively easy to think about, much easier to say than do and very much harder to bring about. Not much activity takes place in any of the very democratic institutions and I have no real bent for leading people. I am not an easy follower of trends and fashions either.

I much prefer to set my own agenda. I can see a huge need for a commonly bound group of people (perhaps drawn from the membership of these forums) that will do more than wring their collective hands or wag their collective index fingers in public. (no slight is intended to any denizen of the Spacedoc forums by this comment)

Many of the distressing histories, which I have read on this site, have affected me deeply and, for now, I believe that I may have some sort of role in trying to keep people alive to the possibilities for taking some sort (any sort) of action.

Dr Uffe Ravnskof (on my list of e-mailed recipients for receiving knowledge of my ePetition) has offered to put links to my own invitation to complete the e-Petition on both the Thincs website and his own website. So by this means... the very small waves I am attempting to create can be made into somewhat larger waves.

I only have 364 days out of 365 for the petition to run. The clock is already running and I need to use the time wisely so as to gather sufficient signatures and create the publicity that should attend such a crucial petition. It wont stop me from writing to the various public bodies, institutions and VIPs and I have no other concrete plans at this time.

As I have stated before, the power behind the interconnectedness of ordinary people, that vests with all people who use the internet, is a huge force for good. We all need to appreciate that fact and try to use it well, wisely and continuously, if we are to see the day when we can get a fair hearing for our complaints about statins.

adec, I really look forward to seeing your considered reply to the points which have been raised here and also in the earlier thread about making sense out of nonsense.

Kind regards,
xrn
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The saga continues...

Postby xrn » Sun Apr 15, 2007 4:37 am

For now, no responses to the complaints I had made to the Department of Health. My latest letter is appended below, which ought to get some response, even if it is just to tell me to go away and to accept that the matter is now closed.

Letter begins...

Having written to you on the 20th March, I would like to know if any progress has been made in respect of my formal complaint being investigated.

Nearly four weeks has passed, without any communication from you, or your department, to inform me that my complaint was received and is being investigated. If this matter has been left to languish, deliberately, kindly have the common courtesy to tell me so that I may take the action that I deem to be appropriate in these circumstances.

xrn
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statins study

Postby eml256 » Mon Apr 16, 2007 4:37 am

xrn--what is the study that Pfizer cancelled in 2006 to which you refer? may i obtain that information? madelyn
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Re: statins study

Postby xrn » Mon Apr 16, 2007 6:27 pm

eml256:
xrn--what is the study that Pfizer cancelled in 2006 to which you refer? may i obtain that information? madelyn

xrn:
Hi, eml256. Of course you can have the information, such as it is. The link to the FDA statement which was entitled 'Pfizer Stops All Torcetrapib Clinical Trials in Interest of Patient Safety" and published on December 3rd 2006, is here...

*http://www.fda.gov/bbs/topics/NEWS/2006/NEW01514.html

You will need to remove the asterisk from the front of the URL before pasting it into your web browser. Pfizer had a link from their press-room but they had taken it down fairly quickly. The URL was here...

*http://mediaroom.pfizer.com/index.php?s=press_releases&item=130

There has been no statement (or none that I can find) about what will happen next, from Pfizer, in respect of compensation payments for the deaths they have apparently caused with this new compound. Of course, I could be wrong and the matter may have already been dealt with. Removing the announcement about the trial from there own website does not inspire confidence in Pfizer. :roll:

Essentially, the new compound appeared to be killing more people than if they were just taking Atorvastatin alone. It was apparently discovered during a monthly audit by the independent monitor... who had noticed the frightening trend and the DSMB immediately notified Pfizer. So it now looks as if the great caring/sharing multinational pharmaceutical manufacturer (Pfizer) was actually unaware that its new product (the compound of Torcetrapib/Atorvastatin) was killing more people than expected.

I would have though that a company with the resources of Pfizer, would have kept a reasonably close eye on their own phase 3 clinical trial and also that Pfizer would not have expected faults in their phase 3 clinical trial process, to be picked up by an external and independent body such as the DSMB. It speaks rather loudly (to me at least) about how little effort Pfizer must be expending on patient safety.

Kind regards,
xrn
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A reply from the Department of Health

Postby xrn » Sun Apr 22, 2007 5:40 am

I have finally received a replay from the Department of Health (DoH) [perhaps that should now be written as 'doh!' with apologies to Homer Simpson] ;) I have reproduced the text below...

"Thank you for your email of 16 April about your formal complaint of 20 March regarding the Department of Health's handling of your correspondence. I understand that you also requested and internal review of your Freedom of Information request and you will receive a separate reply for this. I have been asked to investigate how the department treated your concerns about statins and reply.

Firstly, I would like to apologise again for the inapproriate tone and language in Mr A's email. All staff in the Customer Service Centre have been reminded about our standards and the need to treat all correspondents with respect. You ask why your concerns were never addressed to Caroline Flint, Minister of State for Public Health and whether the information you provided about possible adverse effects of statins was handled by a member of staff with no knowledge of the subject.

I hope it is helpful if I explain why the Department responded as it did. As you will appreciate, Ms Flint and the other Health Ministers receive a large amount of correspondence, and it is simply not possible for them to reply personally to every letter. The Department has established a Customer Service Centre to answer enquiries and submissions from the public and organisations, including the NHS, on their behalf, as Mr A explained in his reply to your second email of 2 February.

Customer Service Centre staff work closely with the Department's policy teams to ensure that the information they use is up to date and, in return, provide regular feedback to Ministers and policy teams on the issues and concerns that are being raised in correspondence. The Department's role is to set broad health and social care strategy for England and it devolves a considerable amount of responsibility for implementation to local NHS organisations. In making decisions and setting policy guidelines, Ministers take advice from policy specialists within the Department and draw on the expertise and knowledge of specialist organisations such as the National Institute for Health and Clinical Effectiveness (NICE).

Clinical decisions and care plans are made by clinical practitioners on the basis of clinical need using their knowledge, experience and the best possible evidence and in discussion with their patients. The Department expects clinicians to keep up-to-date with developing medical knowledge as part of their continuing professional development and assists with this by commissioning and publicising clinical evidence, for example via the National Library for Health (NLH). This library can be viewed at *www.library.nhs.uk/. The Department also provides evidence based patient information at *www.nhsdirect.nhs.uk/. If you are unhappy with a decision or treatment made by a clinical practitioner treating you, you may wish to use the NHS complaints procedure. Details of this procedure can be found at *www.nhsdirect.uk/england/aboutTheNHS/complainCompliment.csmx.

(xrn note: all URLs have an asterisk placed in front of them to assist spacedoc in reducing SPAM)

I am aware that your intention was to clarify whether statin tretament would have an adverse impact on your health and to draw the Department's attention to your concerns about this. I would like to explain a little more about how your correspondence was treated. Staff working in the Customer Service Centre are expected to respond promptly and accurately to all correspondence and to provide as much information as possible about the context of decisions made. I hope this explains why Mr A provided information about NICE work on statins and lipid control.

To answer enquiries and respond to submissions such as yours, Customer Service Centre staff have access to records of policy decisions, including the Government's current position on statins. When necessary, they also contact the Department's relevant policy specialist to check on any recent developments, for example the reports you quoted on adverse effects related to the use of statins, that might affect the accuracy of the Department's response.

This is normally done via email or telephone call and confirmed again on our correspondence system. In this case Mr A contacted Mr T, who works in the Department's Vascular Programme Directorate, which is headed by Professor Roger Boyle CBE, National Director for Heart Disease and Stroke, in order to clarify that the information he had was up-to-date. Unfortunately, his email request for information was couched in highly informal tones and I am sorry that this has provided the impression that the Customer Service Centre does not treat correspondence with the respect it deserves.

To summarise, Mr A was responding as requested on the Minister's behalf and correctly gave the most up-to-date account of the Government's current position on the use of statins, checking his response with the relevant policy specialists. He also explained that, in determining the Government's position, Health Ministers and the Department rely on expert assessments by specialist individuals and organisations, and the Department is currently awaiting the outcome of NICE's work on lipid control. NICE operates independently of the Department, and therefore I cannot say whether their experts are reviewing the articles your (typo) have quoted.

I have checked with Mr T (No, not the one from the A Team) ;) and understand that there is no further recorded information relevant to your correspondence and FOI request. I understand that Mr T confirmed changes to Mr A's draft reply by telephone. I hope I have explained how your correspondence was handled and would like to repeat the apology offered above.

Yours sincerely"

(xrn note: I have adjusted the sentence and paragraph positions a little... to make for a more easily readable web-based letter )

I will get around to drafting a reply to this letter, shortly. Watch this space. ;)

My initial observation is that the reply fixes on how the correspondence was dealt with rather than acknowledging the possibility that all is not well with the NICE guidelines on statins. :roll:

I also note with interest that the National Institute for Clinical Excellence has transmogrified into the National Institute for Health and Clinical Effectiveness. It seems to me as if the role has changed. I would support the search for clinical excellence 100%.

Health and clinical effectiveness can mean much more than clinical excellence. The phrase reeks of policy adherence/compliance rather than clinical innovation... perhaps its just me but it appears as if NICE has just lost its often vaunted independence and has now become an arm of government policy execution.

More as and when...

Kind regards,
xrn
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the promised more... very long as usual :)))))))))))))))))))

Postby xrn » Tue Apr 24, 2007 6:28 pm

Hello all,
The reply to the latest exuses from the UK Department of Health is appended for your perusal... It saddens me to think it is so difficult for anyone to be taken seriously. Well, it is my belief that they cannot say that they did not know and the next step is to seek some alternative publicity.

:twisted:

Kind regards,
xrn

Dear Ms F,
Thank you for your letter dated 19th April.

["Thank you for your email of 16 April about your formal complaint of 20 March regarding the Department of Health's handling of your correspondence. I understand that you also requested and internal review of your Freedom of Information request and you will receive a separate reply for this. I have been asked to investigate how the department treated your concerns about statins and reply."]

["Firstly, I would like to apologise again for the inapproriate tone and language in Mr A's email. All staff in the Customer Service Centre have been reminded about our standards and the need to treat all correspondents with respect. You ask why your concerns were never addressed to Caroline Flint, Minister of State for Public Health and whether the information you provided about possible adverse effects of statins was handled by a member of staff with no knowledge of the subject."]

It is disappointing to find that you should be apologising to me in the first instance. I do thank you for the apology but it is shameful that you should have to provide me with an apology on behalf of one of your staff, who had failed to carry out the work to the standards that you would have expected and I would have liked to see. A little more 'civil' and a lot more 'service' would not have gone amiss. It is the very least which I would expect, in terms of the prevailing standards of decency, when members of the public are dealing with members of the Civil Service.

I was attempting to alert the Department of Health (the most appropriate agency for the government) to some potentially very serious hazards to public health. It was clear to me that Mr A had thought me some kind of madman and had pre-judged the issue to the point where he had decided to tell me to 'go away' albeit in a nice manner. By dint of whose authority (and which legislation) can a minor civil servant make a decision about matters that have implications for millions of people?

["I hope it is helpful if I explain why the Department responded as it did. As you will appreciate, Ms Flint and the other Health Ministers receive a large amount of correspondence, and it is simply not possible for them to reply personally to every letter. The Department has established a Customer Service Centre to answer enquiries and submissions from the public and organisations, including the NHS, on their behalf, as Mr A explained in his reply to your second email of 2 February."]

I had not asked for a personal reply. I was attempting to make the appropriate Minister aware of some significant issues relating to statin therapeutic solutions. I had only requested that the matter be placed before the Minister for Public Health. It was neither requested, nor was it necessary that I should have a dialogue with Caroline Flint. Making an appropriate person aware of facts and issues, that may be unknown to them, is a reasonable act in any democracy. Having my e-mail turned into some sort of private funny joke for the benefit of Messrs, A and T was not my intention, as would have been clear to any half-sensate adult, even to those who occupy positions of little responsibility.

The so-called Customer Service Centre is a misnomer. There was no service rendered to me and it is entirely wrong to label ill people as 'customers'. In a business environment it is doubtful that Mr A would have retained his position. As far as I can tell, there was no intention to pass my e-mail to the Minister and there was also no intention to discuss the matter with the Minister. I believe that no attempt was made to make Caroline Flint aware of the dialogue I was having with her inept proxy, Mr A.

["Customer Service Centre staff work closely with the Department's policy teams to ensure that the information they use is up to date and, in return, provide regular feedback to Ministers and policy teams on the issues and concerns that are being raised in correspondence. The Department's role is to set broad health and social care strategy for England and it devolves a considerable amount of responsibility for implementation to local NHS organisations. In making decisions and setting policy guidelines, Ministers take advice from policy specialists within the Department and draw on the expertise and knowledge of specialist organisations such as the National Institute for Health and Clinical Effectiveness (NICE)."]

The regular feedback to Ministers would be very useful. I would like to know what is the frequency of this regular feedback. If Mr A's contact with Mr T was typical of the Customer Service Section working closely with one of the Department's Policy Teams, then words fail me. Permit me to remind you of the written evidence (as supplied to me under the Freedom of Information Act 2000, and this was apparently the only evidence in existence) of the close working relationship between the Customer Services Department, Mr A and the Policy Team Member, Mr T...

The content of the text file: DE179454... videlicet
"Hi Alan,
Here the case that prompted my clarication request on the statin line
Steve"

The content of the text file: 182440... videlicet
"Hello Alan,
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
Steve"

I would have to say that this informal exchange does not pass muster as the evidence of one section working closely with another, within the same organisation. Rather... it appears to be an informal chat (with very little of the actual work being allowed to intrude on the obviously friendly relationship) between these two employees. On the basis of this exchange, it is stretching the boundaries of reality to cite this particular evidence; as an example of the close working relationship between two sections of the Department. It is merely an unproductive exchange between two employees, who appear to be intent on taking the opportunity to idle away some time.

["Clinical decisions and care plans are made by clinical practitioners on the basis of clinical need using their knowledge, experience and the best possible evidence and in discussion with their patients. The Department expects clinicians to keep up-to-date with developing medical knowledge as part of their continuing professional development and assists with this by commissioning and publicising clinical evidence, for example via the National Library for Health (NLH). This library can be viewed at *www.library.nhs.uk/. The Department also provides evidence based patient information at *www.nhsdirect.nhs.uk/. If you are unhappy with a decision or treatment made by a clinical practitioner treating you, you may wish to use the NHS complaints procedure. Details of this procedure can be found at *www.nhsdirect.uk/england/aboutTheNHS/complainCompliment.csmx."]

I beg to differ. Clinical decisions and care plans are made by clinical practitioners on the basis of clinical need (and in the case of General Practitioners) their contract of employment (now including QOF criteria) and the needs of the government as expressed through National Guidelines in written policies and soon too be those expressed by NICE, who appear to have changed their name from the National Institute for Clinical Excellence (suggesting a search for excellence in clinical practice) to the more pedestrian sounding National Institute for Health and Clinical Effectiveness. (suggesting that their much vaunted independence has been lost and they are now a formally incorporated arm of the executive). Indeed, the National Policy on Statins mentions on page 23, that in 2007, after NICE have reported on statins, that their guidelines will be the ones that will be followed nationally.

As for complaining about my GP, what use will that serve? He was only following government's imprecations and because he is human, I presume that the additional QOF points are sufficient inducement to prescribe me a medication that I must take for life, irrespective of any risks that may bring to me. I understood from Mr A that the UK's national guidelines on statin therapy, are based on the often cited Framingham study. More than 22 years of data was gathered from that particular community. The conclusion was that high cholesterol was a significant factor in causing heart disease.

Last night, I had discovered a newspaper clipping from Framingham. It is taken from 'The News, Framingham-Natick' and dated October 30th 1970. It is headed "Findings of the Framingham Diet Study Clarified".

"Although there is no discernible relationship between reported diet intake and serum cholesterol levels in the Framingham Diet study group, it is incorrect to interpret this finding to mean that diet has no connection with blood cholesterol", Dr William B Kannel, director of the Framingham heart study has stated.

That was from the director of the Framingham study! I put it to you, Ms F, that if there was no discernible relationship been reported diet intake and serum cholesterol, after testing the citizens of Framingham for 22 years, then regardless of what Dr Kannel wanted to think, that relationship could not have existed. The clipping goes on to reveal more of this psuedo-scientific claptrap, that even my 7 year old son would have no difficulty in seeing the flaws of reason.

Should you be inclined to take this matter more seriously than Mr A, at your request, I will be happy to forward you a copy of the clipping, with my own typed transcription of the faded text. I am seriously trying to alert the Department of Health (generally) and the Minister for Public Health (specifically) that the whole Cholesterol Hyposthesis is wrongheaded and to keep lowering cholesterol levels and raising statin prescriptions is an ill-considered policy that will bring harm and havoc to the lives of millions.

["I am aware that your intention was to clarify whether statin treatment would have an adverse impact on your health and to draw the Department's attention to your concerns about this. I would like to explain a little more about how your correspondence was treated. Staff working in the Customer Service Centre are expected to respond promptly and accurately to all correspondence and to provide as much information as possible about the context of decisions made. I hope this explains why Mr A provided information about NICE work on statins and lipid control."]

If this was just about me and my health, I would say, "fair enough", that is life and I would just get on with making decisions for myself. As a citizen of the UK, I have a duty to act responsibly and... I should also have a care to my fellow citizens and my country. It misses the point to see these concerns as exclusively mine and concerning just my health. I am more than able to care for my own health and I do not need the guidance of medical practitioners, who appear to be lining their own pockets with QOF money, to tell me how to live. Mr A responded, as I had expected when I first opened the dialogue with the Department. His second response was not the response of a responsible person. You may well judge that he followed the Departmental diktat to the letter, but he did not act responsibly.

["To answer enquiries and respond to submissions such as yours, Customer Service Centre staff have access to records of policy decisions, including the Government's current position on statins. When necessary, they also contact the Department's relevant policy specialist to check on any recent developments, for example the reports you quoted on adverse effects related to the use of statins, that might affect the accuracy of the Department's response."]

What you say, Ms F, sounds and reads as utterly reasonable. In the face of being told to 'go away' by Mr A, I submit that a substantial procedural irregularity must have ensued.

["This is normally done via email or telephone call and confirmed again on our correspondence system. In this case Mr Acontacted Mr T, who works in the Department's Vascular Programme Directorate, which is headed by Professor Roger Boyle CBE, National Director for Heart Disease and Stroke, in order to clarify that the information he had was up-to-date. Unfortunately, his email request for information was couched in highly informal tones and I am sorry that this has provided the impression that the Customer Service Centre does not treat correspondence with the respect it deserves."]

It would be tedious for you, Ms F, if I were to repeat what I have already said above. Suffice it to say that I am no nearer to having my concerns heard by the Minister of State for Public Health. I had written to Caroline Flint, initially, on January 21st and if I was writing to advise the Department of some terrible new fatal condition that was contagious, it would appear that it would have been useless. I am no further forward now than I was when I had first written to the Minister. I find that to be a lamentable and rather tardy state of affairs.

["To summarise, Mr A was responding as requested on the Minister's behalf and correctly gave the most up-to-date account of the Government's current position on the use of statins, checking his response with the relevant policy specialists. He also explained that, in determining the Government's position, Health Ministers and the Department rely on expert assessments by specialist individuals and organisations, and the Department is currently awaiting the outcome of NICE's work on lipid control. NICE operates independently of the Department, and therefore I cannot say whether their experts are reviewing the articles you have quoted."]

In other words, Mr A made the decision to tell me to 'go away' because he was aware that the Department were awaiting the outcome of the NICE report on lipid control and because that was due to be published in December 2007, he saw no reason for any material to be passed to the Minister for Public Health and accordingly, Mr A thought that he could tell me to 'go away' with impunity. I am astonished that the Department of Health would tolerate such a lacklustre and egregious performance from a member of its own permanent staff.

["I have checked with Mr T and understand that there is no further recorded information relevant to your correspondence and FOI request. I understand that Mr T confirmed changes to Mr A''s draft reply by telephone. I hope I have explained how your correspondence was handled and would like to repeat the apology offered above."]

Thank you for your apology. I understand that nothing further has been recorded. It is to be expected and it confirms that my communication was not taken seriously by Mr A, Mr T or the Department of Health. I have tried my level best to inform the most appropriate people that statins are a disaster that is happening now. The prescription of statins has reached epidemic proportions and, speaking in general terms, they are not helping the people who are receiving them. The population of the UK are in a unique situation in that health care is provided for free, at the point of delivery. With that service comes the issue of accepting and trusting what the assigned medical personnel have to to say and do. We have no option but to trust the medics and the government and in this particular case the authorities have got it wildly wrong.

yours sincerely,
Jeff Cable
xrn
 
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Postby cjbrooksjc » Tue Apr 24, 2007 8:24 pm

xrn: I truly don't know where you find the time and energy to pursue this issue through your Gov't'l departments in this fashion, but I applaud your efforts and your ability to maintain a (seemingly) civil demeanor. My wife had to deal with US Immigration to get a copy of her citizenship papers, and it quite nearly drove the both of us NUTS, and it took TWO YEARS!! At least the British Gov't. seems willing to correspond, albeit in typical concentric fashion. I offer my encouragement; that's all I have to offer at this point.

Best Regards,

Brooks
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Postby xrn » Wed Apr 25, 2007 4:45 am

Brooks:
I truly don't know where you find the time and energy to pursue this issue through your Gov't'l departments in this fashion, but I applaud your efforts and your ability to maintain a (seemingly) civil demeanor. My wife had to deal with US Immigration to get a copy of her citizenship papers, and it quite nearly drove the both of us NUTS, and it took TWO YEARS!! At least the British Gov't. seems willing to correspond, albeit in typical concentric fashion. I offer my encouragement; that's all I have to offer at this point.

Best Regards,

Brooks

xrn:
Hi Brooks. Did you enjoy the ball game that you went to? BTW, if you could give the new website the once over, I would value your impression and opinion. (it is only 144k of code so it should not take too long) ;)

I discovered one faulty URL link that was taking the observer to the wrong document and I have fixed that last night. I seem to be unable to see the wood for trees and would really value an external viewpoint on the site and see if it throws up any more errors that may be lurking there. (it is hard to destroy that which we build)

In this particular instance, I have now lost interest in following this case up with the department of health. Anything less than compliance will mean that I can go on to use alternative means of getting attention with a clear conscience. The audit trail is now complete, as far as I can tell. Being civil (on the surface) is far more effective than ranting, which tends to turn people against you, even if you have a valid cause. ;)

I understand the whole citizenship/passport issue very well. My wife is Japanese and she came to the UK on a very expensive fiancee visa because we had intended to marry. We married within the regulation 6 month period and made all of the required decalrations about not asking the state for any kind of assistance and then it took a full 8 months, to get her passport back out of the passport office here. She was effectively imprisoned in this country, against her wishes, due to some moderately spectacular incompetence on behalf of the immigration authorites here. :roll:

Kind regards,
xrn
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Postby cjbrooksjc » Wed Apr 25, 2007 12:31 pm

xrn: Yes, the ball game was terrific; thanks for asking. It was what, in America, is referred to as a Farm Club game, 'AA' rated (top rating for a farm club is AAA). It's where potential big-leagers are tested and then "Called up" to "The Show"; like the movie Bull Durham. It's a lot more personal than a big stadium. Great time!

I did look at your new site and will do so again with an eye for complications/contradictons in the urls and data. I found the site easy to navigate and informative. Most of the url information (when last I looked) was relatively UK-specific, and I didn't spend too much time with the content. I'll look again tonight. Be aware, I am what is/was known as a Big Iron guy; so, some of the nuances of PC and internet offerings elude me... But, I'll do my best.

Ah, yes, Public Service. How in God's name do you think they came up with THAT misnomer. I can't imagine a word less descriptive of their ultimate result. It's fascinating how predictably incompetent they ALL seem to be; like attracts like; I suppose.

I'll let you know what I see; if anything.

Regards,

Brooks
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Postby xrn » Thu Apr 26, 2007 2:53 am

Brooks:
Yes, the ball game was terrific; thanks for asking. It was what, in America, is referred to as a Farm Club game, 'AA' rated (top rating for a farm club is AAA). It's where potential big-leagers are tested and then "Called up" to "The Show"; like the movie Bull Durham. It's a lot more personal than a big stadium. Great time!

xrn:
It sounds like a great way to spend some time. I know nothing of baseball, other than in my schooldays, we used to play a variant called 'softball' and I was happy to participate but I was really rubbish at the game. No hand-eye coordination and having to wield a bat that was about twice my size. :D

I have spent some time in Vancouver, where I was treated by a friend to a ticket for a Canucks game, and it was my very first visit to an Ice Hockey game. I was impressed! It was very civilised and there was a great atmosphere. Midway through the game, I got to eat a great meal, in a nice restaurant, at the stadium. Since then, I have often wondered why our soccer games cannot mirror such a pleasant environment.

Brooks:
I did look at your new site and will do so again with an eye for complications/contradictons in the urls and data. I found the site easy to navigate and informative. Most of the url information (when last I looked) was relatively UK-specific, and I didn't spend too much time with the content. I'll look again tonight. Be aware, I am what is/was known as a Big Iron guy; so, some of the nuances of PC and internet offerings elude me... But, I'll do my best.

xrn:
The UK-specific stuff is just the beginning and when I was planning the site, it was the stuff I knew best. I am currently sifting through what is literally hundreds of scientific papers in order to arrange them and simplify them. There will be the much more global content soon and it will far outweigh the local UK content.

I am particularly interested in things like font size and choice of colours, because having to read through vast amounts of information and needing to squint to see it, struck me as not very helpful for many people who may not be computer literate and may be old enough to have visual problems. Brian has been sending me stuff and this morning I see an e-mail that has suggested some really worthwhile inclusions. I am really grateful for the help but I have just discovered that it makes for much more work rather than reduces it. ;)

This is a far larger job than I had first imagined it to be and creating a meaningful site is now a priority for me. My first hurdle was getting over the ridiculous restrictions that the medical academic community place on their perals of wisdom. For the life of me, I just don't understand, and I cannot find any justification for the reasons, why scientific and medical knowledge cannot be made public.

For now, I have managed to gain some limited access to information and I am working on the issue of getting better access. It is no surprise to me that many ordinary people have no idea about where the truth of these issues really lies.

Brooks:
Ah, yes, Public Service. How in God's name do you think they came up with THAT misnomer. I can't imagine a word less descriptive of their ultimate result. It's fascinating how predictably incompetent they ALL seem to be; like attracts like; I suppose.

I'll let you know what I see; if anything.

xrn:
I was once in a position where I had to deal with several members of the CIA. (Ronald Reagan's trip to Ireland) I was running the emergency room that was nearest to the place where Mr Reagan was to visit. (Ashford Castle, Cong, co. Mayo.These Ivy League guys had all presented me with business cards that were embossed with the legend 'CIA, Presidential Protection Division' and most of them seemed to be called 'Chuck'. They struck me as hugely efficient... at the time.

On duty in my ER, sitting quietly, cleaning their weapons. We had guys with sniper weapons camped out on the roof of the hospital, all week. They had even set up a telephone (in the ER) that was a direct line to the White House. I was invited to check the credentials, with the White House, as each man turned up for duty. Heady days back then... I had spoken with the people who had actually spoken with the President. :)

Kind regards,
xrn
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Postby Brian C. » Thu Apr 26, 2007 5:40 am

xrn: For the life of me, I just don't understand, and I cannot find any justification for the reasons, why scientific and medical knowledge cannot be made public.


In the words of that great Oirishman, Mr George Bernard Shaw :

"All professions are conspiracies against the laity" (The Doctor's Dilemma)

My endocrinologist confessed he had to agree :)

I think that quote should be in a prominent place xrn
Perhaps on every page....

Brian.
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