{"id":223,"date":"2015-03-04T08:36:53","date_gmt":"2015-03-04T08:36:53","guid":{"rendered":"http:\/\/amazonnewsmedia.com\/articles\/?p=223"},"modified":"2015-05-12T16:31:23","modified_gmt":"2015-05-12T16:31:23","slug":"no-monopoly-on-false-hope","status":"publish","type":"post","link":"http:\/\/amazonnewsmedia.com\/articles\/2015\/03\/04\/no-monopoly-on-false-hope\/","title":{"rendered":"No Monopoly on False-Hope"},"content":{"rendered":"

Following my last Saatchi article<\/a> concerning the downgrading of patient voices, I received some interesting responses, some of which even acknowledged the actual question in my article, which I\u2019m not saying is an easy question.<\/p>\n

Meanwhile Saatchi\u2019s campaign has suffered from the general exploding \u201cconflict of interest\u201d wars in which mud slinging has taken over, as \u201cone another\u201d are all revealed to be brown nosed profiteers.<\/p>\n

In spite of Anti-Saatchi exploiting this mud-fest to claim superiority on ethics, not much acknowledgement has been in evidence (not that any was expected) that being afraid of losing your job isn\u2019t \u201cno evidence of legal fears\u201d, unless \u201clegal\u201d only means litigation.<\/p>\n

However, not even pedantry can change the fact that it shows fear, and certainly doesn\u2019t demonstrate the claimed \u201cno fear\u201d. All this is ignored however, as the other emotional \u201cfalse-hope\u201d trope is liberally slathered on.<\/p>\n

Meanwhile patient voices with cogent points are also peddlers, this time of anecdotes and as such, apparently, a threat in need of personal insults:<\/p>\n

\"1\"<\/a><\/p>\n

On the more relevant question of innovative treatment I also heard the view expressed that its not so much that a doc can’t prescribe an off label drug per se<\/em> but that two or three such prescriptions can result in a red light and sanctions.<\/p>\n

This means that the seemingly irrational and extreme fear exhibited by GPs throwing their hands in the air on being asked to deviate from the norm, may be exacerbated to that level by the fact that they tweaked a different drug for Mrs Jones yesterday.<\/p>\n

So the truth emerges, however slowly, that things are not simply black and white, except in some quarters obviously.<\/p>\n

The most shocking discussion was had with a friend I’ve known since the year dot, and who eventually became a consultant psychiatrist. Quite simply, this is what she said:<\/p>\n

“Doctors think they have a monopoly on prescribing – but they don’t”.<\/em><\/p>\n

Then she told me something about the vast alternative\/black market \u201cdistribution\u201d plethora of pharma drugs which may or may not be being used for anything like the purpose they were designed, a revelation which certainly put the whole debate in a different and surprising light.<\/p>\n

And that also ties back in with the false-hope trope mentioned above. Because, it turns out that just as doctors don’t have a monopoly on prescribing, \u201cquacks\u201d don’t have one on peddling false hope.<\/p>\n

That’s right, patients’ own vulnerability and fear of further debilitation and death can be exploited by anybody in a position to do so, and in spite of the above comments on prescribing, the people most likely to be in that position are, that’s right, doctors.<\/p>\n

Now the anti-Saatchi Bill crew know this obviously, but it\u2019s interesting to note that they also appear to believe that doctors in large numbers are only held in check from instantaneous quack-morph by the lack of a Saatchi Bill.<\/p>\n

When they say it’s a \u201cquacks charter\u201d, they don’t mean homeopaths: homeopaths won’t suddenly be turned into doctors by the Bill obviously. No, the concern is that many doctors themselves are quacks in disguise, and that the moment a Bill like this one is passed, they themselves will immediately turn into quack-loving dispensers of homeopathy and other dangerously misleading treatments.<\/p>\n

When considering doctors\u2019 attitudes to the Bill, its worth remembering this strongly held conviction as well as their actual lack of monopoly on prescribing in the real world. Can we then blame them, with both those things in mind, for being a bit defensive?<\/p>\n

By now, if you’ve read my earlier article, you’re probably thinking, “she\u2019s going to talk about her mother again\u201d. And yes I am, because in fact, having been denied LDN by her doctor she was also denied it by her oncologist, who didn’t even bother throwing her hands up in the air as she didn\u2019t even feel she had to give a reason.<\/p>\n

“No” she said. <\/em>
\n“Even though you have no other suggestions or options ?” I asked. <\/em>
\n“Yes”, she said.<\/em><\/p>\n

But then, oh then, the oncologist decided to offer my mother some false hope.<\/p>\n

Tarceva she said, has helped some people in prolonging their lives for some time. It can be very effective, she said, in about 7% of cases causing a temporary arrest in growth of lung tumours, as a palliative treatment.<\/p>\n

But when it turned out that mum wasn’t in that 7%, the drug was pressed on her anyway and due to her trust of doctors and her abject fear, she took it.<\/p>\n

Unfortunately in the other 93%, it does nothing at all, except for the side-effects.<\/p>\n

Oh yes, the side effects, a full-body painful raw, weeping and itchy rash.<\/p>\n

So in late May 2011 mum began taking the Tarceva, and after a week was covered from head to foot, but especially on her face with a horrible itchy painful weeping rash. As we had travelled over from New Zealand and it was my birthday, Mum had arranged to have a gathering and this meant that she had to meet the family, several of them for the last time, covered in this rash while the drug did absolutely nothing at all to help her, and was known and admitted to have almost no chance of doing so.<\/p>\n

So let’s get this straight. This dying patient was not allowed a drug that was anecdotally recorded as having shrunk tumours and specifically tumours of the very type of lung cancer that she had. Meanwhile, she was given a drug known to do absolutely nothing for her, and which was highly likely to cause pain and discomfort in the last months of her life.<\/p>\n

And, as if this wasn\u2019t enough, when the rash broke out, she was told, in spite of the fact that she wasn’t in the control group, that sometimes a really bad rash meant that it was doing more good!<\/em><\/p>\n

Well having pushed it on her of course they had to say something to justify the useless, painful rash.<\/p>\n

If that\u2019s not false hope, nothing is.<\/p>\n

Over-respectful to doctors though she was, even Mum wouldn’t have taken the drug if they’d actually said “it won’t do anything but make you iller and feel miserable” because, um, she was vulnerable, not stupid.<\/p>\n

But just as with the testimony about what doctors do, the reality of magical false-hope thinking of false-hope coming from the NHS, isn\u2019t going to be accepted, because In case you haven\u2019t picked it up yet, there is an agenda<\/em> here and that is that false-hope means<\/em> \u201cby quacks\u201d, and can only mean<\/em> \u201cby quacks\u201d, and any other point of view\/patient voice has to be downgraded.<\/p>\n

False hope and quacks have to be synonymous<\/em> and anything else just can\u2019t happen.<\/p>\n

And there\u2019s no change there, because here\u2019s part of a conversation with a skeptic from three years before Saatchi\u2019s Bill about my mum\u2019s situation.<\/p>\n

\"2\"<\/a> \"3\"<\/a><\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

\"4\"<\/a><\/p>\n

\"5\"<\/a><\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

\"6\"<\/a><\/p>\n

Whatever the truth about off label drugs and doctors\u2019 fears, and whether anyone will ever admit the reality of this false-hope-peddling by doctors is anyone\u2019s guess.<\/p>\n

Aggressive denial of these gaping holes in logic, however, doesn\u2019t make them go away any more than the ridiculous “Saatchi is a PR stunt-man but we are squeaky clean”<\/em> protest, is a believable response to the toppling house of cards of pretend objectivity.<\/p>\n

From here on in, such pretentious whining isn\u2019t going to come over as anything but a resentful jibe because your current \u201cenemy\u201d happens to have more powerful connections than you – today<\/em>.<\/p>\n

What the aggressive, minimising tone towards patient voices does do is throw up worrying questions, never more relevant to the debate on the Medical Innovation Bill, regarding the trumpeting paternalistic \u201cconcern\u201d.<\/p>\n

Because aggressive downgrading and minimising of patient voices, for their own good, says less about genuine concern for patients as they actually are, and (let\u2019s whisper now) more about control.<\/p>\n","protected":false},"excerpt":{"rendered":"

Following my last Saatchi article concerning the downgrading of patient voices, I received some interesting responses, some of which even acknowledged the actual question in my article, which I\u2019m not saying is an easy question.<\/p>\n","protected":false},"author":1,"featured_media":224,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[10],"tags":[],"class_list":["post-223","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health"],"aioseo_notices":[],"_links":{"self":[{"href":"http:\/\/amazonnewsmedia.com\/articles\/wp-json\/wp\/v2\/posts\/223","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/amazonnewsmedia.com\/articles\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/amazonnewsmedia.com\/articles\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/amazonnewsmedia.com\/articles\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/amazonnewsmedia.com\/articles\/wp-json\/wp\/v2\/comments?post=223"}],"version-history":[{"count":2,"href":"http:\/\/amazonnewsmedia.com\/articles\/wp-json\/wp\/v2\/posts\/223\/revisions"}],"predecessor-version":[{"id":242,"href":"http:\/\/amazonnewsmedia.com\/articles\/wp-json\/wp\/v2\/posts\/223\/revisions\/242"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/amazonnewsmedia.com\/articles\/wp-json\/wp\/v2\/media\/224"}],"wp:attachment":[{"href":"http:\/\/amazonnewsmedia.com\/articles\/wp-json\/wp\/v2\/media?parent=223"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/amazonnewsmedia.com\/articles\/wp-json\/wp\/v2\/categories?post=223"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/amazonnewsmedia.com\/articles\/wp-json\/wp\/v2\/tags?post=223"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}