The Myth of ‘False Hope’

By Sophie Sabbage

As a 48 year old wife and mother with late stage cancer in my lungs, lymph nodes, bones and brain I had been quietly hoping that Lord Saatchi’s Medical Innovation Bill would make it through the House of Commons – unusual as that outcome may have been for a private member’s bill. But hey, he got it through the Lords, had The Telegraph backing his cause and won considerable support in the country, so there was some cause for excitement.

Sadly, it was not to be. Norman Lamb, the Lib Dem Health Minister, blocked it on the basis that “some highly vulnerable people, desperate for a chance of recovery or remission, could be easy prey for exploitation by the few unscrupulous practitioners who peddle false hope.” 

Margaret McCartney, a GP in Glasgow, called the bill “an open door to quackery” and claims “there are already many expensive clinics already peddling false hope in the form of unproved or disproved interventions for cancer and other serious illnesses.” [paid access article]

Discounting valid treatments

I don’t doubt there are some exploitative clinics and unscrupulous practitioners who take advantage of people’s vulnerability and fear. Of course there are. But it seems to me that my vulnerability is also being used to score political points and justify a medical perspective that too easily discounts valid treatments that don’t conform to conventional paradigms.

Michael Baum, professor emeritus of surgery and visiting professor of medical humanities, University College London states in the British Medical Journal [paid access article] that “unproved treatments already blight the lives of many; bizarre diets… deny patients the pleasure of self-indulgence in choice of food or drinks. Money can be squandered on trips to healers, and, in the desperate search for a miracle cure, patients can be denied a dignified and decent death in the comfort of their own homes and in the embrace of their families.”

I find this patronizing in the extreme, not to mention disingenuous. The first thing I did when I was diagnosed was make radical changes to my diet. This has not been easy, but I am in no doubt that the changes have helped me feel stronger and healthier than I have felt in years.

A change in diet has improved the quality of my life

I have more energy, vitality and presence of mind. Old medical problems that had persisted over many years, and may well have been contributory factors in my cancer, have all but vanished. After one month on this diet – and before I started taking the cancer inhibitor drug I am thankfully on – I stopped coughing blood and getting breathless when I walked up the stairs. I am not so naïve to think my diet will save my life, but I can certainly testify to it improving the quality of my life in very significant ways.

It is bizarre for a doctor to recommend “the pleasure of self-indulgence” to gravely ill patients. Self-indulgence is part of what makes us sick in the first place. The terrifying increase in the numbers of people getting cancer – now close to one in two – can surely be traced, at least in part, to what we have been putting in our bodies in recent decades.

To encourage self-indulgent eating is far worse that denying someone a dignified death. It is likely to accelerate their death and diminish its ‘decency’. Is this his antidote to ‘desperate searches for miracle cures’? To simply bid us ‘Bon Voyage’ with a slice of pizza and a glass of vino?

Power comes from engaging in my own treatment

 I am weary of the cynicism I encounter in physicians about the alternative and complementary things I am doing to support my wellness. I object to being called ‘desperate’ just because my choices aren’t all scientifically proven within UK guidelines. Some are just sheer common sense. At minimum I feel more empowered making them. I am not just doing what my doctors tell me. I am proactively engaging in my own treatment of my own disease, which shifts me from victim of my illness to author of my wellness – however long that may last. This does not mean I am deluded or denying the gravity of my situation. It just means I am still in charge of my life.

My diagnostician gave me a great gift when he found the first tumours and sent me off for more scans. “Don’t become a patient,” he said – advise I took deeply to heart. To be exploring all my options (as anyone with a five-year-old daughter would do when they’re told their time is up) does not make me desperate. It makes me determined, instead of defeated. It makes me creative, purposeful and brave.

I’m not interested in making political arguments or qualified to do so. But, as a patient with a terminal cancer diagnosis, I am qualified to talk about my desperation, my vulnerability and my hope. And there’s the biggest rub. The two primary arguments being posed against Saatchi’s bill, apparently on my behalf, are these:

  • Ensuring patient safety
  • Protecting patients from the creation of “false hope” (also the primary argument against many complementary treatments).

From my perspective it is cruelly ironic to be denied the opportunity of greater innovation in the name of preserving my safety. Safety from what? The certain death I am already facing? The chance I might die of something less predictable than the reliably fatal disease I already have?   The peace of mind I might be afforded by going out knowing I pooled all my creativity to stay as long as I could and my doctors picked their creative toenails before finally conceding they could do no more? What?

The future is not cast in stone

But more inhumane than this is the false concept of ‘false hope’. Either there is hope or there is none, but it can’t be false or delusory or wrong. Hope is a projection into a possible future, a feeling that something wanted, desired or longed for could perhaps become a reality. That hope may not be met, but hope itself is real. It is perhaps the most profoundly important psychological fuel for anyone diagnosed with a terminal illness. The future is not cast in stone. No one can predict with absolute certainty what is going to happen or when. Hope boots me out of bed in the morning and lifts my eyes to the sunrise. Hope carries me through my darkest days of fear and nausea and pain. Hope breathes life into my cells when I am exhausted and broken with grief.

Nothing can disappoint me more than being told I can’t be cured. The worst has already happened. I don’t just hope for a cure. I hope for more time. I hope for good times. I hope for healing of mind and spirit even if I can’t heal my body. I hope for the energy to take my daughter ice-skating. I hope to wring the last drops of joy from every moment I’m given. I hope to be well while I feel ill and to be as boldly, brilliantly, beautifully alive as possible while I walk upon this earth. Hope is how I know I’m fully alive.

Michael Baum writes, “Hope is always important, but it must not be betrayed.” So don’t betray it by calling it false. And don’t betray patients like me by forcing us into inevitabilities you cannot predict and hopelessness that will surely accelerate our demise.

Sophie Sabbage

Sophie Sabbage

Sophie Sabbage is a writer, inspirational speaker and facilitator of mindset transformation. Having led a successful consultancy called Interaction for twenty years, she has now reshaped her vocation in response to her diagnosis of stage four lung cancer in October 2014. She is now focusing her energy and talent on helping other cancer sufferers find their way through the terror and grief of their experience while radically shifting the conventional narrative about this disease. Her book ‘The Cancer Whisperer: How To Let Cancer Heal Your Life’ was published on 6 October 2015 on the Amazon Kindle platform. | sophiesabbage.com

28 Comments

  • Great post and superb insight into healthcare.
    As a doctor, I stress to my patients to be proactive and direct their care; to try different treatments and never give up.
    Hope is what motivates us and propels us forward as an optimistic species.

    Again, great article.
    Dr. Mitchell

  • what a powerful discussion of your situation, and how it is too-often NOT helped by those who arrogate to themselves the power of being our ONLY help-givers! you have my heart-felt admiration and sympathy, and my very best wishes!

  • Sophie, Thank you for sharing this with such clarity and courage. I share your views and long for a time when we can see beyond the dogma of ‘evidence’ into trusting individuals to make informed choices for themselves. Have you read Radical Remission by Dr Kelly Turner? It’s full of stories of people who held on to hope and survived against all odds.

    • Sophie Sabbage

      Thanks for the encouragement Dawn. As it happens my husband is currently reading Radical Remission – which, by the way, I also dare hope for! Sshh…

  • Poignant and perfectly posed. How I wish our almost useless medical boards and other stultified watch-dogs had not only this much insight, but half the humanity.

    Hope does spring eternal: it is insensitive health care providers who snuff out that flickering flame which for many is the powerful light at the end of the tunnel. Stories abound of impossible survivals, you would think that the wet blankets might at least might give a grudging nod to unconventional approaches. After all, they admit to having no answers!

  • I agree with everything you say. Norman Lamb would do well to remember that thousands of people wanted this bill. Hopefully the electorate will ensure he cannot make further damaging decisions.

  • A very powerful article, but I think it still does not tackle the real issue of false hope.

    Many of us are going to find ourselves with a cancer diagnosis. For many of those, it too will be terminal.

    Where should we place our hope? Whilst the feeling of hope – any hope, false or not – may well improve the quality of our lives, I will want to place my hope where my energies are best directed at achieveing something. Investing in strange diets or unproven treatments may well rob me of using to the best my precious currency of hope. As such, aligning my hope with our best knowledge of reality ensures I spend my hope well. That hope my be for myself, but I can also invest it in my loved ones.

    As such, the robbing of hope by those who have a pretence to knowledge strikes me as a particularly nasty crime. Saatchi’s Medical Innovation Bill was about denying redress to those who had been harmed by the incompetent or by the charlatan. I want confidence that those who are engaged in my treatment exist in world where their actions have consequences. Medical innovation does exist in an environment that will penalise those that who exploit hope. The Bill was completley unecessary and put people at risk of harm.

    • Editorial

      Your position would be perfectly reasonable if we lived in a world where all cancer treatments were safe and effective; if we did no sane person would spend vast sums seeking out the unproven cures that infuriate you so much.

      But we clearly don’t. In fact we live in a world where the average increase in survival time as a result of drug treatment after a cancer has spread is measured in months. It varies for different ones and there is a detailed technical debate to be had, but overall it is pretty poor – one authoritative estimate of average benefit is an additional four weeks. At least one big study found that about 4% of breast cancer patients benefited from adjuvant chemotherapy.

      Ever since Nixon’s war on cancer in the seventies we’ve been hearing that the scientists would have it cracked within the next ten years or so. In 2000 I interviewed on senior scientist who said it would have become a chronic disease by 2015. The confident prediction then was that the human genome would let us target oncogenes and therapies would be kinder and far more effective.

      Only it hasn’t happened – a bit kinder maybe, improved anti-nausea drugs- but the genetic project, on which we are still betting the farm, has run into serious problems and no lesser figure than James- DNA -Watson has raised serious doubts that it will ever deliver because of the sheer complexity of the mutations in individual cancers that increasingly sophisticated genetic tools is revealing. I’m working on a piece about where else we could be looking.

      Given these serious shortcomings it is remarkable that the cancer establishment continues to be so self-confident (arrogant?) as to not simply disapprove of anyone investigating alternatives but to take active steps to stop them. It’s clear that the patients are not satisfied since the majority of those having treatment also investigate alternatives. Very few people getting antibiotics for an infection check out alternatives because, for now, the drugs work well.

      Your are using the familiar oncologist’s rationale for this nannying- that straying patients must be protected from themselves, from false hope, from wasting their money, even – according to Baum – from denying themselves treats. Many patients would like a more adult relationship with their consultants rather than the parent child one it seems to be modeled on at the moment.

      Sure the consultants know a vast amount of biochemistry but the the patients have a detailed knowledge of how their bodies respond. By definition RCTS (assuming that they haven’t had their statistics spun as we know is deplorably common) only tell you about the average response. Nothing about how individual patients are going to respond.

      I find it puzzling how you can apparently make such a clear distinction between the hope offered by such non-standard treatments as a diets that have undoubtedly, as in Sophie’s case, make people feel healthier and empowered and the hope surrounding drugs such as Avastin.

      It was licensed on the basis that it shrank tumours a bit, even though tumour shrinkage tell you nothing about how well a patient will do. In fact there is no evidence that Avastin, which costs around 90.000 dollars a year, make patients survive longer.

      Have patients routinely been told this and if not did its prescription involve false hope?

      • As usual, you jump to conclusions Jerome. I do not mention drugs or treatments. I ask people to put their hope where we it can be aligned with our best knowledge rather than with the fantasy claims of nutritionists, vitamin pill peddlers, psychics and quacks.

        There is nothing wrong at all about using diet to feel better about life and to be in as good shape as you can. But I think it is as close to evil as you can get to promise that restrictive diets and enemas and vitamin pills and juices offer a hope and then to take money from people with cancer. That is not using food to promote wellbeing. It is a con.

        • Editorial

          Talking about drugs in the context of cancer treatment isn’t jumping to conclusions, it is inevitable. If you are a cancer patient you have a choice. Do I just follow the conventional advice which will involve drugs or do I try some other things. Things which are unlikely to cure me but which might make me feel a bit better, reduce the side effects of chemotherapy, maybe enhance it.

          So what they want to know is: what might help? In that context your technique of lumping everything non-standard together and declaring it is fraudulent and wicked and evil is just silly. There are perfectly plausible reasons why some might well help and there are some things that almost certainly don’t. But the idea it is all useless is not true and highly unlikely.

          For instance older people who are more likely to have cancer are also more likely to be deficient in various minerals and vitamins – B12 and D to take two examples – there’s good research on this. Fill them up with chemotherapy, which damages a range of healthy tissues and it is very likely that their mineral and vitamin supplies will be further depleted especially since they may well not be eating well. To sweepingly dismiss it as fantasy and quackery is not remotely scientific. I would be prepared to bet that good research looking assessing vitamin status in elderly patients and treating it has not been done. In the absence of good evidence you have to make a judgement and who are you or anyone else to say someone will gain no befit?

          Have you actually looked at any of the data on the considerable health problems that people have after they have finished chemo and how there are a number of trials showing that a variety of CAM type practices including mineral and vitamin supplementation can often help? This is an approach strongly supported by Macmillan nurses, so do they come on your hit list of peddlers and quacks?

          To be concerned for patient well-being is admirable, to call for better research to find out what works is sensible but to assume all and any treatment not in the BNF is evil sounds like the pronouncement of a religious fundamentalist.

          • Once again Jerome, you mischaracterise my position.

            I do not ‘lump everything together that is non-standard as fraudulent’.

            My dividing line is between claims that are made to patients that have a sound rationale and/or evidence and those claims that are irrational, pseudoscientific or otherwise undefendable. And the latter can come from quacks or ‘Big Pharma’.

            The Saatchi Bill deliberately removed liability from doctors from offering the latter when such claims could indeed harm a patient.

            I am all for non-standard approaches being offered to patients. The barriers to such new treatments tend more often to be to do with cost, or trial availability or some such other practical matter. Non-standard approaches may well indeed be valuable. The trick is to ensure that doctors can learn from any such innovation. Inclusion in trials is by far the best way to do that,

            And to answr your question. I am quite happy that people undergoing chemo often need sound advice from registered dieticians about how best to ensure their dietry needs are met. This may well include supplementation What I am very doubtfull of is the high street ‘nutritionist’ getting involved with their menu of branded and costly supplement pills behind, them, loaded with daft ideas learnt by correspondance at some dodgy college, or read from some book by someone who has read a few papers on nutirion and exptrapolated wildly into the world of so-called nutriional medicine.

          • Editorial

            I understand that you are angry about very broad brush bogey men who try to rip off vulnerable patients but your grip on the specifics of cancer drugs and their non-drug alternatives seems limited.

            I say this not to be rude but because your style seems to be to ignore specific points in response to your allegation but instead to rush on to make new ones. This makes responding fairly unrewarding

            For instance the things you object to, such as the “nasty crime” of robbing people of hope” or of people “pretending to have knowledge”, are so broad and vague that most people would agree with you. Certainly many people who go to non- standard therapists.

            When I come back with specific examples of standard treatments that seems to give false hope becasue the benefits are so small, such as such as the marginal effectiveness of adjuvant chemo or poor lack of life extension from Avastin, there is no reponse.

            Several times you laid into vitamins – you referred to “vitamin pill peddlers” and included vitamins in the “evil” list of things that promised hope. But when I pointed out benefits from vitamins and set out when and where they could be useful. you also didn’t respond

            I asked about relevance of vitamins post cancer treatment but got no response. I asked about MacMillian cancer nurses and their support for a variety of non-standard treatments including vitamins but again – no response

            I suggested patients should be treated as adults and be free to have an informed discussion and then make a decision. A freedom you are apparently opposed to granting on grounds it could give rise to false hope. You don’t respond and make no attention to deal with Molly’s very lucid response to this charge.

            I asked which were the false hope claims in mainstream treatments and give some of my candidates for being “true” hope treatments in the non-standard arena and explained why

            You did reply to this saying:
            ” I ask people to put their hope where it can be aligned with our best knowledge rather than with the fantasy claims of nutritionists, vitamin pill peddlers, psychics and quacks.”

            But that is as vague as all the rest of your points – there are big issues around how do we test mainstream treatments and how reliable the tests are and who funds the non- mainstream, but they seem way off your radar

            You did make one specific statement “My dividing line is between claims that are made to patients that have a sound rationale and/or evidence and those claims that are irrational, pseudoscientific or otherwise undefendable. And the latter can come from quacks or ‘Big Pharma’.

            Well yes – in an ideal world. But as has already been pointed out, there are serious issues with the reliability of Randomized Controlled trials for drugs and you appear to be suggesting vitamins fall in the irrational category, since you’ve listed them twice on the evil side, when there is a strong case for their use.

            You support people getting chemo getting “sound advice from registered dietitians” but how up to speed there are you? They are probably recommending a low fat diet – not sound at all.

            You then contrast registered dietitians, who probably also believe that calories have the same effect on the body whichever macro nutrient they comes from (they don’t) with another of your straw people:

            “What I am very doubtful of is the high street ‘nutritionist’ getting involved with their menu of branded and costly supplement pills behind, them, loaded with daft ideas learnt by correspondence at some dodgy college, or read from some book by someone who has read a few papers on nutrition and extrapolated wildly into the world of so-called nutritional medicine.”

            Can’t think of anyone who would disagree. Such a fraud may exist, just as dangerous and incompetent doctors do, but they are in no way representative of people who help cancer patients using, among other things diet and supplements.

            I appreciate that you feel there is wrong being done but I can’t engage any more since you seem unwilling to advance from your starting point and the evidence you give for your central point appears very limited.

    • If you are genuinely looking with an open mind for anything that can help cancer patients then you will be cheered by the latest report (12 March 2015) from The Professional Standards Committee. As you can see you will now be able, with a clear conscience, to recommend nutritional help to patients as long as they seek out a CHNC/BANT Registered practitioner. I wonder if you will?

      Quoted from BANT.org.uk:

      Today the Professional Standards Authority published a report entitled “Accredited Registers – Ensuring that health and care practitioners are competent and safe report.” This document emphasises the fact that the traditional healthcare system is a the cusp of a dramatic change, and that practitioners of newer and/or complementary professions such as Nutritional Therapy are as competent as other traditional healthcare providers, and that they can make a difference by working together with them as part of multidisciplinary teams under NHS commissioning.

      In today’s report, Mr Cayton says that “the NHS is re-examining the way it delivers services and is exploring new models of integrated care better-suited to today” and explains that with changing times the need to deliver new, innovative ways to improve people’s health is more pressing than ever. The PSA calls for traditional health professionals like Medical Doctors and Nurses to look beyond the confines of the health and care system they’ve been used to, and to create broader multidisciplinary team that engage the 63,000 practitioners on 17 Accredited Registers covering 25 occupations, one of which is Nutritional Therapy. This will offer different approaches to care which NHS commissioners can choose with the confidence that they are competent and safe.’ Mr Cayton continued to say that “we must invest in prevention and wellbeing to deliver healthcare for the 21st Century. The complementary therapists registered with CNHC are among the health practitioners who have a key role to play in this new model.”

  • A thought: ‘He is the best physician who is the most ingenious inspirer of hope’ Samuel Taylor Coleridge 1832

  • These people are confusing hope and statistics. To tell someone thay have a 90% of survival when it is actually only 5% is a false statistic. Tell them they have a 5% chance of suvival and they can be in that 5% is hope.

    Tanya malpass.
    http://www.bobtheboblsblog.com

  • Sophie Sabbage

    I am appreciating all these comments, including the concerns that echo those who opposed the Saatchi Bill. I want to clarify that I am not opposed to orthodox medicine. I am confident it is playing a big part in keeping me alive right now.

    I simply object to the perspective that somehow, because I have cancer, I am more gullible, deluded (by ‘false hope’) or easily exploited. I have rarely been more emotionally robust and mentally vigilant. Facing death does that to you, at least in my experience.

    I don’t have a political agenda and am not taking a position. My life is on the line so I can’t afford to take sides. In fact I often find myself squished between conventional and complementary medicine as they push against each other in my name. I wish they would collaborate instead. Listen to each other. Shake hands. Find out what they could do together to save more lives.

    Now that would be a major cause for hope.

    (Love the Coleridge quote, Dr Unwin. Thank you!)

    • Hi Sophie,

      It is an interesting question as to whether people with cancer are more subject to the claims of charlatans and the deluded. People without cancer can be too, but whether or not cancer makes people more ‘vulnerable’ does not matter too much in that it is clear that many people do fall for unproven and false claims.

      And I hope you do not mind me saying that those who have fallen into the well of false hope are going to vehemently deny that they are there. Of course.

      The Saatchi Bill was bad law because it removed redress from patients and families who had been harmed by negligence or quackery. It is as simple as that. Although plain quackery was a fear here, the far bigger worry was that Pharma itself would see the Saatchi regime as being a lot more friendly to it where private doctors could offer the latest unproven’wonder’ drugs without worrying about licensing and trials and evidence. And if those drugs harmed patients then so what? All the risks under the Saatchi Bill would have been dumped on the patient. Some may have taken those risks. Many would have been harmed. Better that those risks are shared by responsible health practitioners who can help patients navigate through the bewildering claims that are bombarded at people with ‘nothing to lose’.

      • Andy,

        What you seem to fail to realise, is that many people have come to realise just how flawed medical science is – and how it adheres to ideas that have long been dis-proven. Indeed this entire website is devoted to this subject.

        It might be worth reading the other articles on this site (mostly on subjects other than cancer), and then thinking if you still feel the same about the medical establishment.

        • David – I fully accepty that medicine is an imperfect human activity. And especially our ability to treat many cancers falls far short of what we would wish. But to then discard reason and evidence and embrace psuedoscience and irrationality, such as the idea that ‘food is medicine’ is obviously not the answer.

          By promulgating such nonsense, those that do are indeed very guilty of instilling the type of false hope that I argue is a an appalling abuse of people who are ill.

        • I must admit, it is become a common theme on this thread for people to put words into my mouth and assume what I believe.

          Perhaps we can get back to the main theme of this post – does ‘false hope’ exist?

          Could anyone who does not believe this, answer the following:

          1) Do people make claims about cures for cancer that cannot be substantiated by reason or good evidence?
          2) Could be people be harmed by such claims?

          If so, should we not as a society endeavour to expose those that make such claims?

          • Andy,

            I think the problem that is being discussed generally on this site is that “reason and evidence” (your phrase) is concentrated in the hands of a very few people – often in receipt of grants from big pharma.

            I got interested in all this after I got a pretty nasty reaction to statins. Anyone can be unlucky and suffer an unusual side effect if they take a drug, but what amazed me was that simply chatting with others of my age, I heard of many similar stories – in other words, these drugs cause lots of problems.

            It turns out that much of the evidence regarding statin trials is held under non-disclosure agreement by Professor Sir Rory Collins – critics can’t see the evidence that was formally collected, and are told that people attribute the pains of getting older to statins! In other words, the formal evidence in this field is utterly skewed for profit.

            This is a disastrous state of affairs, and I am sure it is not confined to one area of medicine. Given that, it would seem better to let those who wish explore alternatives – particularly if they are not related to big pharma.

            If you no longer believe in truth coming from on high, the concept of “false hope” reduces to mere uncertainty.

    • A great article Sophie, I concur with you entirely…as a health professional, an alternative healer, someone who has worked with death and dying and someone who was diagnosed with cancer I understand your objection re gullibility and ‘false hope’ The use of chemotherapy, in particular for those with advanced and end stage illness is in my expereince often mis-sold… people who have been told they are for palliative care often misunderstand the use of ‘chemo’ as they associate chemo with cure..and hence develop false hope… I wonder what would happen if people were offered the cost of the chemo agents to spend on anything they wished to enhance their quality of life..and the quality of their dying… this could well not only give them ‘hope’, but would empower them in making choices that they felt were right for them…

  • May I just remind everyone here of the standard social media advice: “Do not feed the troll”?

    I would not be so critical of Dr Margaret McCartney. Here, for example, was her BMJ article ‘Statins for all?’ three years ago: http://www.bmj.com/content/345/bmj.e6044?ijkey=6b50516a719daf12f465057b3d1322a0d510808d&keytype2=tf_ipsecsha . If ever any supposed medical treatment has given people false hope, it has to be statins: the promise of a heart-disease-free future. All based on the highly questionable statistical manoeuvre of ‘relative risk’ – something which makes the outcome exponentially sensitive to small changes in the observations.

    Billions of pounds later, with many millions of people suffering adverse effects which it now turns out nobody took the trouble to investigate, are we without heart disease? No. Especially if you look at the heart operation statistics and not just heart disease mortality … .

    In any case, here is the letter I wrote last month the Chair of the Commons Health Select Committee calling for a formal investigation: http://innereye.eu/obhiblog/wp-content/uploads/2015/02/Letter_Wollaston_Feb_2015.pdf . No reply so far, although Dr Wollaston’s office confirmed that the letter had been received and passed on to the Select Committee for reply.

    Unfortunately, cancer is not the only major disease where this myth that non-drug treatments offer ‘false hope’ pops up. I’ve experienced it with dementia (hence the title of our film: ‘You must be nuts! – the business of dementia’ but see also http://livingwelldementia.org/2015/03/13/englands-future-strategy-for-dementia-offers-hope-if-articulated-and-implemented-properly/) and here’s what has been happening with diabetes: http://sugarfreekaren.com/2015/03/14/jason-fung-towards-a-cure-for-type-2-diabetes-at-the-old-mutual-health-convention/ .

    Let me propose a hypothetical commercial strategy:
    1) create the impression that a disease is unavoidable ‘fact of life’, terminal and incurable (with a pill)
    2) celebrate ways to detect the disease early (to lead to perpetual prescription of a pill/surgery/invasive treatment which may treat symptom of disease but not the cause of the disease itself)
    3) undermine the credibility of real, cheap, non-invasive treatments through criticisms of ‘false hope’, ‘no evidence’, character assassination, etc (ie denounce the competition)
    4) build community of ‘friends’ of disease (eg sponsor a charity or members of its scientific panel) to reinforce all of the above … and make sure no positive research is done about the cheap competition.

    Is there anything in the current UK health framework which prevented the application of such a commercial strategy to, for example, the major modern diseases? After all I have seen through dealing with my father’s struggle with dementia, my hypothesis is that the answer is ‘No’. [NB In the years the Thalidomide scandal, it would have been 'Yes' - but then my mother used to work for the now-disbanded Committee on the Safety of Medicines.]

    I look forward to any evidence which will disprove my hypothesis.

    I’m not convinced that the Saatchi Bill would have tackled the underlying cause of this particular disease. However, maybe a formal investigation into how ‘Yes’ changed to ‘No’ and a regulatory overhaul would? Perhaps this would answer Dr McCartney’s call for a revolution in health care: http://www.bmj.com/content/350/bmj.h1331 ?

  • Maybe my hypothetical commercial strategy above is not so far-fetched!

    See this report of a presentation by UK cardiologist Dr Aseem Malhotra: http://sugarfreekaren.com/2015/03/07/dr-aseem-malhotra-the-impact-of-dietary-changes-in-the-context-of-modern-medicine-at-the-old-mutual-health-convention/ .

    “There is an epidemic of misinformation among doctors and patients. There are seven sins that contribute to this lack of knowledge:

    - Biased funding of research (research funded because it is likely to be profitable, not because it is likely to be beneficial for patients)

    - Biased reporting in medical journals

    - Biased patient pamphlets

    - Biased reporting in the media

    - Commercial conflicts of interest

    - Defensive medicine
    We have medical curricula that fail to teach doctors how to comprehend and communicate health statistics. There is statistical and health illiteracy amongst doctors and patients. There are many ways of presenting a benefit while hiding risk. Using relative risks as opposed to absolute risks is a common way of misleading the public without actually lying, which overestimates the benefits of medical intervention.

    - There are also financial conflicts of interest and a culture of more treatment is better”

  • Sophie,
    Thank you. You say it like it is and it was a privilege to read.

  • Sophie
    Hope is never ‘false’ to those who hold on to it, only to others looking on from outside. You are quite right it may turn out to be unfulfilled but only the future will reveal that. I don’t know if you are familiar with Victor Frankl’s book ‘Man’s search for meaning’ but I find the following quote very powerful:
    “everything can be taken from a man but one thing: the last of the human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way”.
    Frankl’s experiences in the concentration camps led him to believe that those who are most likely to survive any horrors are those who have a why, a reason to stay alive, unfinished business – a meaning; not simply the fittest and strongest.
    I wish you all success with your way and your hope.

  • Heart felt, honest and full of wisdom….great post. I’m following your journey Sophie and you inspire me daily to be real, vulnerable and open to what life is offering. Lots of love cxx

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