As reported previously the NHS NATURAL HEALTH SCHOOL in Harrogate, is a service that offered a range of free complementary therapy treatments to patients and their relatives who are affected by a cancer diagnosis and are either receiving their cancer treatment at Harrogate or live in the Harrogate and Rural District.
This NHS school offered alternative treatments to cancer patients and claim that they know from experience, that when Complementary Therapies are integrated into patient care we are able to deliver safe, high quality care which fulfils the needs of even the most complex of patients.
In addition, they also ran courses for alternative practitioners. Their reflexology course, for instance, covered all of the following:
- Explore the history and origins of Reflexology
- Explore the use of various mediums used in treatment including waxes, balms, powders and oils
- Explore the philosophy of holism and its role within western bio medicine
- Reading the feet/hands and mapping the reflex points
- Relevant anatomy, physiology and pathology
- Managing a wide range of conditions
- Legal implications
- Cautions and contraindications
- Assessment and client care
- Practical reflexology skills and routines
- Treatment planning
I imagine that the initiators of the school are full of the very best, altruistic intentions. I therefore had considerable difficulties in criticising them. Yet, I do strongly feel that the NHS should be based on good evidence; and that much of the school’s offerings seemed to be the exact opposite. In fact, the NHS-label was being abused for giving undeserved credibility to outright quackery.
Therefore, I did something I do rarely: I filed an official complaint in September 2019.
What happened next?
Nothing!
I sent several reminders; and what happened then?
Almost nothing!
I got several assurances that a response was imminent.
And then I forgot all about it.
So, I was surprised to receive this email yesterday from the chief executive of the HARROGATE AND DISTRICT NHS FOUNDATION TRUST (I did not change or correct anything):
Thank you for contacting our Chair about the Natural Health School and my apologies for the extended delay in replying to you. We have reflected on the points you raised and I have set out a summary of this below in respect of the key issues.
- As a result of colleagues who set up the service having moved on to other posts outside of the Trust we have not been able to understand how the service was named. However, I agree that the terminology “NHS Natural Health School” could be interpreted in a certain way and as such we have agreed it should instead be referred to as the Natural Health School only to avoid any interpretation that it has national NHS endorsement. We will amend the information on the website and other material to reflect that the service is endorsed by the Trust.
- The service is hosted by HDFT, in that staff are employed by the Trust, but it is funded through charitable contributions. No NHS resources are used in providing the school, or the complementary therapies which are provided to patients receiving treatment at the Sir Robert Ogden Centre.
- There is no intention to assert that the services provided (ie the complementary therapies) are treatment for cancer. The ‘treatments’ referred to are complementary therapy treatments and are described as such. They are focused on wellbeing concurrently to the medical treatment of cancer, and we are satisfied that this is clear in the current description.
- Whilst recognising the differences of views on the complementary therapy treatments, the service regularly secures feedback from patients and this has been positive and as such we continue to offer it to those patients who would wish to take it up.
- The school provides training to allow participants to achieve a qualification which is awarded at level 3 by the International Therapies Examination Council.
I hope this provides clarity on the context to the service.
Best wishes
… … …
___________________________________________________________________
I find this response more than a little unsatisfactory; here are just a few points I find worth mentioning:
- As far as I can see, apart of the actual name of the school (it is now called ‘NATURAL HEALTH SCHOOL’), very little has changed. In particular, a NHS link is still implied in multiple different ways.
- To claim that ‘we have not been able to understand how the service was named’ seems like someone is taking the Mikey.
- So is the remark that ‘the terminology “NHS Natural Health School” could be interpreted in a certain way’.
- The statement ‘there is no intention to assert that the services provided (ie the complementary therapies) are treatment for cancer’ is simply untrue; symptomatic treatment of cancer is still a treatment for cancer!
- If the treatments are focussed on wellbeing, they nevertheless should be backed by evidence to show that they improve wellbeing. The label ‘complementary’ does not absolve a therapy from the need to be evidence-based.
- There may be ‘different views’ on complementary therapies; yet, there is only one set of evidence – and that fails to support several of the treatments on offer.
- Positive feedback from patients is no substitute for evidence.
I am not sure whether I should reply to the above letter. I take little pleasure in embarrassing chief excecutives.
WHAT DO YOU THINK I SHOULD DO?
177 Responses to The ‘(NHS) NATURAL HEALTH SCHOOL’ in Harrogate – an update
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Dear Prof, not only you, but all of us who value integrity and honesty in healthcare must lobby harder.
In September 2019 I wrote to my MP, Dr Sarah Wollaston, who was then the chair of the Health and Social Care Committee:
“I appreciate you have rather a lot on your plate at the moment, but could I ask you to have a look at this website which gives every appearance of being that of an NHS institution:
http://www.nhsnaturalhealthschool.co.uk.
If the National Health Service Natural Health School (NHS NHS) is entitled to use the NHS branding, there is a serious and important question as to how the NHS can endorse this range of pseudoscientific ‘therapies’, SCAMS, and quackery, whilst at the same time urging NHS staff to base their professional work on evidence of safety and effectiveness (EBM or science-based medicine).
The claims made by the NHS NHS are fatuous, misleading and harmful – even claiming to treat cancers:
“Our highly qualified therapists offer a course of FREE treatment to patients and carers affected by a cancer diagnosis following referral by their healthcare professional. The treatments currently provided include Reiki, Reflexology, Therapeutic Massage, Daoyin Tao, The Bowen Technique and Acupuncture.”
I appreciate suffering people need care and deserve support and attention, but professional integrity and honesty surely demands patients (and those who serve them professionally) are not misled – especially by the NHS.
If the pseudoscientific treatments endorsed by the NHS NHS are allowed to be incorporated into NHS care, we can all pack up and go home. And Harrogate and District NHS Foundation Trust of which the NHS NHS proudly declares itself to be part, should be exposed as being dishonest and taking advantage of the vulnerable and gullible.
Do you agree that is to be deprecated?”
Sarah replied that she had written to Professor Ian Cumming, Chief Executive Health Education England on my behalf. “I do hope this is of some help and I will keep you advised of the response…I don’t think there will be time before an election to feed this into the Health and Social Care Committee programme.”
Indeed, the election came upon us and Sarah, (by now a Liberal Democrat after being Conservative, resigning the whip to be independent and then joining the Change Party) – lost her seat.
In the interim I replied: “There is an existential threat here to the principle of the NHS encouraging evidence-based medicine, if its branding is used to promote use of therapies which are implausible and which have no evidence of beneficial effect other than as placebos.
I obviously support patients in need having counselling, but therapists associated with the NHS should act with integrity and not mislead the vulnerable and gullible into believing Reiki therapists can actually transmit energy, that needling the skin can result in benefit, that unrefined plant products can safely treat any pathological condition better than pharmaceuticals etc. The fact that the NHS NHS is a charity is irrelevant – it still preys on NHS patients.
Is that acceptable?”
Now much of the political dust has settled, I will contact Professor Cumming directly and lobby him to secure more rational (and honest) responses. And of course there are a number of other NHS institutions who associate with similar SCAMS – and certainly some NHS GPs who refer patients to such ‘services’. (GMC ethics require such GPs to accept ultimate responsibility, but they don’t!)
And all of us who are concerned at dishonesty and false claims in healthcare and the NHS in particular should lobby all authorities we can – in my case, the BMA of which I am a councillor, and all the MPs who are medically qualified. Some might take up the issue. And we can all lobby the ultimate authorities – Simon Stevens, and the Daily Mail!
Best wishes for the New Year.
May integrity prevail.
Richard
I agree, of course, we need to lobby harder for rationality and EBM. but it does not seem to lead to anything but being fobbed off by someone bar of any comprehension of the issues involved.
It is still branded on the website as `Harrogate and District NHS Foundation Trust’. So is it part of the NHS or not? I have not heard of the International Therapies Examination Council. Apparently it is funded by the Learning and Skills Council, ie your money and mine. So people are being trained in nonsense at our expense. I suggest you ask these bodies whether they validated the reflexology course on the basis of evidence for effectiveness.
It seems to me that if it is thought necessary to apply ‘complimentary’ to a treatment then this treatment cannot actually work, since if it did the term ‘complimentary’ would not be used. Now if this project was to be used to run trials of treatment that would be a different thing but this seems not to be the case.
I wonder if those who contribute to the charity that funds this really know what they are paying for..
Do you feel in any way that this organism, its name or its practices constitute a risk to the public?
yes
@ alexandre monnier
Without a doubt the school and the SCAMs it promotes/teaches present serious risks to the public. I encourage you to read and give some thought to Professor Ernst’s earlier blog post from May of last year: bit.ly/Ernst_10Dangers
I agree with you entirely – this amounts to dishonesty. They are implying that their treatments are backed by the NHS and that they have some validity whereas neither is the case.
There is a complete lack of transparency. Neither patients, nor I suspect financial donors, will likely be aware that these treatments are all SCAMs and that patients who are already ill, dome undoubtedly very ill, are being subjected to worthless and mindless “therapies” to gratify and line the pockets of deluded SCAM practitioners and being facilitated by clueless NHS administrators.
No doubt some people will appreciate the extra attention, and aromatherapy may well be pleasant as will massage and so on, but patients should not be being deceived into believing that it will in any way affect their prognosis.
The NHS ought not to be party to such deception either.
I am sure you must get fed up of banging your head against a brick wall but it is only with someone with your status and credentials continually doing so that these things will change. I am sure Richard Rawlins is right and that the ultimate arbiters may be the Daily Mail – how do you feel about approaching them?
I will think about it
thanks
@Mark Thornton
I believe you are right on two fronts.
(My experience with full-time advocacy is a 10-year stint fighting Big Tobacco in Canada.)
First, sustained effort by credible people is crucial. I know it can be disheartening and take forever—and sometimes you feel like you are talking to the wind—but there is a payoff.
Sometimes that payoff is not obvious. While advocates are always looking for big changes (tobacco use in Canada has dropped from around 34% in the mid 80s to around 15% now—fantastic!), there are often other ways the advocacy pays off at the street level and for individual people that we don’t see often enough. Those are the stories that will keep you going.
Second, don’t underestimate the power of the media to change politicians’ minds. I’ve had more than one politician tell me that once elected, their only job is to be reelected.
Two short stories about this.
1. When I was an advocate, there was a core group of about six organizations working on national tobacco control. Most of us were from fairly conservative organizations that wrote letters, met with politicians, ran anti-tobacco advertisements, penned editorials, etc. There was one group with a very strong leader, however, who would carry coffins and signs to Parliament Hill, run full-page ads tearing into politicians and, generally, do things that were very aggressive that got noticed by the media. Guess who almost single-handedly convinced governments to take action? Him.
2. I sued a provincial government some time ago because, when I was a little boy, the government agency placed me with a convicted pedophile—twice. (I was the victim, it was not my fault and I refuse to feel shame. I am not embarrassed to disclose this.)
This legal action may be more common now, but at the time, suing for damages for sexual abuse was unheard of. Seven years later, there was still no settlement. I finally wrote a nasty letter to the premier and his Attorney General threatening to go public. Two weeks later, I was told they had agreed to my demands.
All this to say that as frustrating as it may be, with Professor Ernst on the case, we are all better off.
There are many Cancer Support Centres attached to hospitals, either Macmillan or otherwise. My understanding is that all the complementary therapies on offer to the patient are agreed by the Medical Professional, ie Oncologist : that it is suitable for their individual patient, should it be chosen.
These Centres, from my observation, are tightly run and with integrity: the therapies are not the cure, but the support.
If something free is being offered to patients undergoing serious medical treatments, and they receive a benefit, why would you want it removed? Because it places them in danger of not accessing ‘proper’ medicine? Well, that’s not the case here.
I get that you sceptics have a mission to remove CAM from every corner of the globe, but really this one makes little sense, and deprives those undergoing treatment, some comfort, one that I have seen first hand. Of course, some patients are not interested in CAM and therefore don’t choose it.
These centres are regulated by the very people you validate as medical professionals. CAM is in many hospitals, and if patients benefit whilst receiving their medical treatment at the hospital, I can’t understand why you would want to remove it.
From my experience, CAM therapists are regulated and very carefully selected. And importantly, they can make a difference.
It is known that acupuncture is recommended by some medical professionals for the side effects of chemotherapy.
“you sceptics have a mission to remove CAM from every corner of the globe”
personally, I don’t want to do this at all!
in the present case, I wanted to stop an organisation using a false label [in other words stop fraud] + make sure that they use the best evidence available [there is some positive evidence for SOME CAMs, you know].
@Angela
“…you skeptics…”
I should just leave it there.
But I won’t.
“These Centres, from my observation, are tightly run and with integrity. . .”
I’m sorry, which regulatory agency are you from that oversees them all?
“CAM therapists are regulated and very carefully selected.”
Not where I come from (planet Earth.)
“It is known that acupuncture is recommended by some medical professionals for the side effects of chemotherapy.”
It is known? Really? Only to the delusional. Yes, some “medical professionals” (who aren’t professionals, really, if they believe this nonsense) may recommend it. You know that belief is not connected, in any way, to whether it works (or not), right?
Please forgive my tone. Sometimes I get tired of “you CAM apologists.”
Ron Jette – your tone is fine, it’s the contents that baffle me.
What part of planet earth do you live that gives you so much information about something you abhor?
Have you had that conversation with the consultant oncologist and told him he is delusional for recommending acupuncture to help with side effects of chemotherapy. If not, there are quite a number to choose from. So translated : you have removed the consultants’ medical status because they have recommended CAM? Ok. So what do you say to the patients who report good experience (sic) from said acupuncture?
And your insights into regulatory bodies: are based on what? Oh yes because you are from Planet Earth? Don’t advertise that magical place too much, or it could get very crowded.
Seriously??
@Angela
“These centres are regulated by the very people you validate as medical professionals. CAM is in many hospitals, and if patients benefit whilst receiving their medical treatment at the hospital”
I am afraid you are quite wrong – these centres are IN NO WAY regulated by medical professionals such as oncologists. In fact, sadly, most real medics have a very poor understanding of SCAM treatments and do not understand the harm it can do. Many mistakenly believe that modalities such as acupuncture do have a real effect when in fact this is illusory – this is because they have not looked into the facts of the matter and because of the heavy marketing of these SCAM methods.
A case in point is the recent JAMA review article of acupuncture/acupressure studies which suggested that these therapies could be useful in the treatment of cancer pain – such a prestigious journal should have done a better job of binning such a poorly researched and written article. The studies quoted were mainly poorly done and one was just a list – and we know in advance that all papers out of China on acupuncture will always be positive! In fact acupuncture studies have time and again been shown to be nothing but a THEATRICAL PLACEBO!
In addition the so-called regulatory bodies that are supposed to oversee SCAM therapies are made up of the very SCAM therapists themselves so there is no real oversight at all – Quis custodiet ipsos custodes? They make up their own rules and then are judge jury and executioners as well so there is no oversight whatsoever. Since they all buy into the same delusions it is a case of the lunatics running the asylum.
The point you are missing also is that patients and their families are BEING MISLED. They are being conned that these co-called therapies are in some way helpful when they are NOT! They are just window-dressing for the benefit of lining the pockets of the SCAM artists. In addition they are training more SCAM artists in the process so that they can in turn SCAM even more people in turn. None of this is even remotely ethical.
In addition people are being conned into donating to “charity” without understanding that their donations are being used to finance worthless therapies, while the tax-payer is funding these ITEC qualifications for magical delusional treatments. I don’t see how you can imagine that any of this is a victim-less process.
you say “From my experience, CAM therapists are regulated and very carefully selected. And importantly, they can make a difference. ”
This is the typical anecdotal nonsense that believers in magic so often parrot. what evidence do you have to support this baseless assertion? how much experience do you have exactly? what knowledge do you have of their regulation? (see my point above – their regulation is in fact incredibly lax) how do you know they are very carefully selected? are you on the selection panel? or is this just more of your imaginary SCAM idealism? perhaps you can provide evidence of this “careful selection process? What difference exactly can they make? I have pointed out that some processes may make a person “feel” better – but so can a cup of tea and a chat without all the mumbo-jumbo and the wild claims – and it’s a lot cheaper!
It is quite wrong for the NHS to be used as a prop and imprimatur for these quacks to ply their trade and to hoodwink vulnerable patients into thinking they are benefiting from these so-called remedies. The only beneficiaries are the SCAM artists who are being paid to give the treatments and the ones whose training is being sponsored.
Sadly it is people like yourself who blindly support this nonsense and who ignorantly endorse these “Alice in Wonderland” treatments with such anecdotal and imaginary testimonials as you have done, and the equally ignorant Trust Chairman who facilitate this ridiculous tomfoolery. In the 21st century you would think people would be sufficiently educated not to believe in magic and pseudoscientific piffle such as “energy treatments” “qi” “archangels” “miasms” and so on.
Scepticism is about treating claims upon the evidence and their origins and the likelihood of their being true. In addition it is not generally ethical to lie to people – claiming that therapies work when they don’t is lying. Nobody is objecting to doing something to make a person feel netter – the objection is to making false claims and to using the NHS as a backdrop to make those claims look more official and scientific.
mark thornton – ‘these centres are IN NO WAY regulated by medical professionals such as oncologists’. I have searched randomly NHS hospitals with Complementary Therapy Centres. This is the first one that said on its NHS Hospital website : ‘We offer a selection of complementary therapies to our patients with cancer and their carers under the care of The Oncology and Haematology Consultants’.
Most hospitals have such centres, some under the umbrella of Macmillan. You don’t have far to look once you search.
This blog extols the virtues of our medical professionals (mostly deserved) yet you say’ most real medics have a very poor understanding of SCAM treatments’ .Maybe as you consider yourself more knowledgeable, you should tell them they are wrong to support complementary therapies for their patients. I can’t be sure but think most hospitals have a complementary therapy centre. Multiply them by all the consultants involved, that’s quite a task.
The point I am missing is that patients and their families are BEING MISLED you tell me. Who is doing the misleading? ….. lining the pockets of SCAM artists you say. I think you will find, If you had a real interest in care and support that small donations MAY be requested after a few weeks of free treatments, These therapists give their time freely and I know that. There are good people out there and you have with your commentary denigrated not only them but also medical professionals. I know (and don’t accuse me of blindly supporting something I am ignorant of) that it is made absolutely clear within these environments that complementary therapies are a support in he knowledge of their consultants but it is not a cure.
If you think the NHS is a backdrop for complementary therapies, you are underestimating the NHS medical professionals, and that is what is truly sad.
@ Angela
” I can’t be sure but think most hospitals have a complementary therapy centre. ”
there you go again making totally unsubstantiated guesses – what evidence do you have for this statement? In point of fact MOST hospitals have no such thing!
” These therapists give their time freely and I know that.” – kindly provide proof!
Nowhere on the site does it say that these therapists are providing their services for free and I would find that highly unlikely – most SCAM providers are not so altruistic. Instead the programme is funded through charitable donations not just from grateful patients but also from a charity associated with the hospital – although I doubt that donors are aware that they are funding useless therapy.
In addition the therapies are used to train students in these fantasy treatments and charge exorbitant fees in the process which further goes to fund the trainers (who are doubtless getting well remunerated for their teaching duties!)
“There are good people out there and you have with your commentary denigrated not only them but also medical professionals”
Maybe in your imagination – if you have been following this blog or if you pop over to the Science Based Medicine Blog or have a look at Orac’s blog or the Quackwatch blog then you will see just how many”good people” there are in complementary medicine – it is infested with scam artists, tricksters and frauds who are peddling all sorts of worthless remedies that cannot possible work. If they worked they would be real medicine and not complimentary. No doubt there are some who are deluded rather than fraudulent but they are still misleading people. Please have a good look at these highly factual and educational resources and at the sources in the side-bar of this blog.
I have not denigrated any medical professionals. In medical school or post-grad doctors do not get much exposure to SCAMs – after all what is the point of being trained in useless therapies? However this does mean that most doctors are unaware of what many of these actually are or of how bizarre and ridiculous many of them can be. Because of the hype surrounding many of them in the media and the fact that a very small number of doctors have actually embraced a couple of these SCAMs themselves, many conventional doctors have come to believe that these things are probably harmless or may have some mild benefit so what’s the harm? Without the time or desire to investigate each SCAM for themselves these things are given a pass – especially given the vigour and marketing behind the whole SCAM machine. It is after a very lucrative market – one that is growing rapidly despite the distinct lack of evidence.
I never suggested they were marketing it as a cure but they do promote it in these situations as symptom relief when there very little evidence in most cases for any of this at all. Patients may well appreciate the extra time and fuss but they should not be misled into thinking a therapy is effective for anything in the absence of evidence.
The other objection is that by raising the profile of SCAM therapies in an NHS setting with NHS backing they are seeking to legitimize SCAM and making it appear mainstream – as you are doing by suggesting that “most hospitals have a SCAM centre.” Whenever one of these treatments is shown to work it should be incorporated into mainstream medicine and the others should be ditched – but of course they never stop using worthless treatments ever!
mark Thornton – your post is quite bizarre. Your comments are so odd, that I will just post a couple of points whilst understanding that in your mind you are completely correct about – well just about everything really. So after this I would really not waste my time trying to explain you are not the go to person to learn about NHS complementary therapy centres.
‘In point of fact MOST hospitals do not have complementary centres’ you assert. I live equidistant between 5 excellent hospitals. They all have CAM centres. That’s a fairly small part of UK – is it unusual.? No – check out random hospitals in London
and across the country : they have Complementary therapy centres. I am not sure why you are convinced they don’t exist: as I said bizarre.
I don’t know what site you are referring to, but I can categorically assure you that these therapists are voluntary: and I know because I have been involved. Granted some
Staff may be paid, but volunteers are volunteers.
However, I do know that there are two or three paid Reiki
Practitioners in UK hospitals.: a minute percentage considering the amount who volunteer across UK Hospitals and Hospices. You say you would find this highly unlikely: what evidence is that?
You have a problem with donators not being aware of what they are donating to( you evidently have very little trust in mankind). So you could, once you have established there are complementary health centres in hospitals, contact the charity and check it out, and ensure the public have all the facts.
You say complementary therapies are infested with scam artists, tricksters and frauds. I have been involved for several decades with different complementary therapies and have met the opposite of your description.
‘There you go again making totally unsubstantiated guesses’ you said. Right back at you mark thornton : you are most welcome to continue ….you have succeeded in my withdrawal from this very bizarre discourse.
@Angela
you keep making assertions based on anecdotal evidence – things based solely on your own supposed experience.
just because people in your experience are volunteers or hospitals that you have been to are a certain way is a far cry from “most” or “all” – can you not understand that?
this is a repeated pattern with SCAM – people rely upon anecdotal evidence and Chinese whispers and presume that their own experience is a universal truth.
I fail to see what is bizarre about what I have written – if you had taken up my suggestion and simply looked at the subjects linked in the side-bar of this very blog or the many many items on the blogs on SBM, Orac, Quackometer and so on you will see that there are many thousands of cases where complementary therapists have fleeced patients with dangerous and worthless so-called therapies. A very recent case involved a chiropractor and an elderly man incurring a broken neck who later died – detailed on this very blog! This should not have happened.
These sites are not of my doing – they represent many other professionals cataloguing the cataloguing the harm being done by the very sort of people that you are defending. But you prefer to rely on your “personal experience” over a wealth of contradictory evidence – which is typical of your ilk. It’s called confirmation bias.
Just have a look at these sites why don’t you? Or are you afraid of having your bubble burst?
The only bizarre thing is that people like yourself continue to believe in this tooth fairy nonsense when there is insurmountable evidence to the contrary.
@ Mark Thornton
Quackometer
I love it, that must be an FDA approved device ?
Prof Ernst yes I meant to add a sentence saying I agreed with the NHS Title point In your post being misleading.
Most of the posters here are sometimes quite vociferously anti-CAM : I thought you included: apologies if that isn’t the case.
are you sure you don’t confuse ‘anti’ with critical – and the opposite of critical is uncritical, not a good quality!
Professor Ernst – No I am not confusing Anti with critical. Good demonstrations of vociferous anti- CAM posts are by Ron Jette and mark thornton : it’s just like reading a complete deluge of BUT …..I am right and you are wrong.
No the evidence is there : there are more vociferous anti CAM posters on this blog than I have observed anywhere. It’s like a little hub, and bears little resemblance to reality.
@Angela
“….bears little resemblance to reality”.
You hit the nail on the head there. What is reality? Is it what people think they have observed, or is it the probability of what is really going on when sources of bias have been minimised? By for example carrying out well designed clinical trials.
@Angela
If you don’t understand that much of this nonsense is founded on nothing more than fairy tales, spells and the theories of long-disproven silly people, I could hardly expect you to understand anything I say.
At first, I thought you were just mis-, ill- and uninformed. I have since revised that. I see now that you are nothing more than a troll—and not even a very good one—a species I do not feed. Good day.
Ron Jette – because someone has a different view to your’s does not mean they are mis,
ill and uninformed. It means you have made an assumption based on your bias.
‘I see that you are nothing more than a troll’ that is quite funny: i assume you cherry pick and discard comments that are not only trolling but unpleasant.
‘I could hardly expect you to understand anything I say’ yes you are correct.
everyone is entitled to their own opinions, but not to their own facts [who said that?]
Give me good science and I will believe. Simple.
If a “therapy” depends on hocus-pocus, magic, incantations, implausible theories, inadequate studies, straw-man and been-here-forever arguments, red herrings, anecdotes or silliness of any kind, expect criticism. Full bore.
People shouldn’t have to suspend their critical thinking skills to buy into a medical treatment. If it really works, show me the evidence. As too many have said before me, if there is evidence, it is no longer alternative medicine. It is just medicine.
https://edzardernst.com/2019/09/does-this-new-test-of-reikis-efficacy-overturn-my-previous-assessment/#comment-116600
@Ron Jette
“People shouldn’t have to suspend their critical thinking skills to buy into a medical treatment. If it really works, show me the evidence. As too many have said before me, if there is evidence, it is no longer alternative medicine. It is just medicine.”
Soooo, Ron
What happens when patients have subjected themselves to SBM, and it doesn’t “work”. Do we also get to put to use our “critical thinking skills” ? and come to a evidence based conclusion.
@RG
Absolutely. Those critical thinking skills should tell you that if regular treatment doesn’t work, then that does NOT mean that dumb quackery such as homeopathy or reiki is a viable option – quite the contrary actually: science-based medicine is BY DEFINITION the best type of medicine that we have(*). If that doesn’t work, then you can be quite certain that nothing will work – and the best (and in fact only) remaining option is then to wait and hope that the problem resolves by itself.
And to hammer this point home even further: science-based medicine may well be the most difficult thing we humans do at the moment. Living creatures have evolved countless mechanisms to stay alive and well – and the problem is not only that we often don’t fully understand these mechanisms, but also that they tend to interfere with our attempts as humans to solve medical problems. For instance, this can make it very difficult to distinguish the effects of our interventions from things that are happening naturally. In spite of this, (regular) medical science is still making a lot of progress, because at any given time, thousands of scientists are niggling away at those mechanisms, to find out how they work.
This also means that it is ludicrous to presume that any type of unscientific fantasy ‘medicine’ dreamt up by one person such as reiki will actually work – and anyone turning to that sort of quackery for whatever reason most certainly is NOT using their critical thinking skills.
*: Because if we find a new or different treatment that proves to be better than our current standard of care for a particular condition, then that new treatment will become the new standard of care for that condition.
@ Richard Rasker on Tuesday 07 January 2020 at 19:28
Now, why is there no ‘like’ button?
@Richard Rasker
Again, I make no claims to any CAM therapies, if you can show where I have, you prove me wrong.
You hide behind the cloak of the science based medicine buzz word, as if it mystically makes your medicine treatments successful…. it does not.
I, along with millions of other are attesting that SBM fails everyday ! Why do you think patients are turning away from SBM ?
Over-promise and under deliver-medicine.
Fail fail fail
RG
“You hide behind the cloak of the science based medicine buzz word, as if it mystically makes your medicine treatments successful…. it does not.”
You need to understand probability. Science based medicine is more likely to be successful because the science tells us that. But it is not always successful. There is nothing mystical about this. In contrast, the science tells us that CAM mostly does not work. As I have said before, if you disagree then you deny science, the edifice on which modern life is built.
“Why do you think patients are turning away from SBM ?”
What evidence do you have to support this?
“Over-promise and under deliver-medicine.”
There is some truth in this. Over 40 years I have seen a lot of drugs promise much in early development and fail to cut the mustard in large trials. In contrast, acupuncture for example promises that it will `re-balance your qi’ without the slightest shred of evidence that qi exists. If you can provide evidence that CAM fulfils its promises then feel free.
@RG
Sure, that is to be expected. As I said: science-based medicine is one of the most difficult things we humans have ever done. Reaching a correct diagnosis is already rather difficult in many cases – and quite often, that is still a walk in the park compared to actually fixing the problem. So yes, failure is always an option.
However, this doesn’t change the fact that IT IS STILL THE BEST TYPE OF MEDICINE WE HAVE – BY FAR. It still cures and helps far more people than any other approach.
But if you can come up with something better, I’d be most interested (and I’m sure the scientific and medical world as well). Just don’t expect me to hold my breath.
With all due respect, but you sound like a five-year-old here (which, coincidentally, is also the approximate mental age of most believers in alternative medicine IMHO).
That might be the ideal but it is far from what happens in practice. If treatment doesn’t work it might well be that the diagnosis is wrong, or that there is something about the patient causing them to respond differently from expected, or that a different course of management might work better in that individual.
One of the worst things that can happen is that the patient is seen by the wrong specialist whose area of expertise is so narrow that he is unable to recognise that the problem lies outside his field.
Or there might be a communication problem affecting compliance with recommended or prescribed treatment.
Though I do think that many people have unrealistic expectations of what modern medicine can achieve, for instance believing that chronic disorders can be cured (if they could they wouldn’t be chronic) and becoming disillusioned when this doesn’t happen.
@Dr. JMK
Thanks for your honesty Doc
However, I don’t know about MD’s turning patients away, or notifying their patients they don’t have a viable solution… before charging for services.
@Dr Julian Money-Kyrle
You are of course absolutely right, and my statement was based on the general principle of science-based medicine, with the unspoken (and indeed highly unlikely) premise that no errors are made. Perhaps I should have made that clearer, but I decided to go for brevity here.
I know that in reality, mistakes are made all the time – and quite recently, I experienced such a mistake myself. While working, I had a sudden, peculiar loss of vision in the lower left quadrant of both eyes, so something was wrong in the visual part of my brain (without any further symptoms of a stroke). It wasn’t a black spot, but more like the blind spot we all have: a part of the field of vision that isn’t registered by the brain, but with a sort of smudged edge in my case. In particular, there was something wrong with the left side of anything I focused on: it simply didn’t exist as far as my visual cortex was concerned.
The ER neurologists couldn’t find anything wrong, but as I didn’t have any history of migraine, they figured it could well have been a TIA. So after some more (negative) tests I got prescribed anticoagulants and statins (for a slightly elevated LDL cholesterol), and was told that I had to take those for the rest of my life. Which of course is a bit of a shock, thinking of myself as a completely healthy person up until then.
But when I told my brother a few days later, he said that he had experienced the exact same thing – at least five or six times, identical every time. And his neurologist had diagnosed it as a visual migraine – so a migraine with the common visual aura symptoms, but without the usual splitting headache.
And then my father chipped in, telling us that he also had this experience a few times. And sure enough, after a bit of searching, I found a YT video that comes quite close to showing what I experienced: https://www.youtube.com/watch?v=G8P_ZTJqv8g
I consulted my GP, and we decided that it probably wasn’t a TIA after all, so I could discontinue the medication (although I hadn’t taken the statins anyway, as they only lowered the residual risk by another 15% at most).
So here’s a failure of science-based medicine right in my face – and a failure that would have made me a chronic patient, with medication for the rest of my life, completely unnecessary.
Does this mean that science-based medicine is a failure? No, of course not! Lots of people DO suffer from TIA’s, and they DO benefit from the diagnosis above, and from the medicines prescribed!
And oh, the conclusion that my neurological event was NOT a TIA was also the result of science-based medicine.
But what about the ER’s neurologists and their erroneous assessment of my situation? I personally think that they’re simply biased towards diagnosing more serious neurological problems, because that is what they see most often. Had I consulted my GP first instead of walking into the ER when it happened, things may have turned out differently.
The big question is: how could this be improved? Because a wrong diagnosis is Bad, and telling a healthy person that they should take medication for the rest of their life is even worse. Yes, I asked my GP to give feedback to the hospital’s ER neurologists, so hopefully, they will not make this same mistake again so easily. But Mistakes Will be Made – science-based medicine is one of the most difficult things we do (and I distinctly recall having said that before).
And to finish it off (and in more than one respect), let’s consider what an alternative practitioner such as a homeopath would have done in a case like this. In my case, the dumb quack would have listened to me, reassured me, charged me some $ 200 for the consultation and some sugar crumbs, and that would have been the end of it. Hooray! Homeopathy works!
But in the case of someone with an actual TIA, they would have done the exact same thing. With a 25% chance of getting a far worse CV event in the short term, instead of getting the optimal science-based treatment – and guess where those preventable CV events end up? Nope, not in the homeopath’s office …
Richard,
Coincidentally I had exactly the same symptoms myself some years ago; I remember suddenly noticing that I couldn’t see to fill in a blood test form. I immediately took myself off to see our neurologist who sent me there and then for an MRI scan and then told me that it was probably migraine. I have never had a repeat episode, though a few years later I had mutiple episodes of classical migraine aura (fortification spectra) over a period of weeks, again with no subsequent recurrence.
Certainly the consequences of failing to diagnose and treat a TIA are much more serious than overdiagnosis. However, I agree that while the ER neurologist (I would imagine a trainee rather than Consultant) could give you immediate care, long-term management should be in consultation with your GP, and in any case if the diagnosis remained TIA then it would require further investigation for treatable causes (such as carotid artery disease).
Managing these kinds of problems requires a whole system of care with the relevant teams working together. I don’t see much of that happening in alternative medicine.
Maybe you can contact the Trading Standards Office to file a complaint for deceptive marketing.
i do believe that they are misrepresenting the position they hold, however, the treatments appear to be free. The training though is not and therefore technically, if someone took a course with the intention of developing an NHS career and then discovered that this therapy was not available as a NHS treatment then they could litigate for misrep. The damages though are simply the return of funds and perhaps arguably something for the wasted time.
As most peeps who enter this circus already have their eyes fixed on juicy private clients wallets, I doubt anyone is going to sue them for this misrep.
Ultimately the patients have little rights here, a day spent having your back rubbed and someone putting warm stones on your legs may well be a bit odd in the grand scheme of your cancer treatment but its not really viably compensatable in terms of a legal action.
As its the NHS which is being plastered over the site (i note that the link from the NHS logo has been disabled) they have the right to intervene and have this removed.
All we can do is prompt them that this is an unauthorised attribution of the Trusts IP and that they should issue a cease and desist letter.
After reading all this, I struggle to understand if the issue is
1) a misleading name (incorporating the NHS logo)
2) the fact that cams are recommended by (or work alongside) the NHS in some cases – cancer is a common one
3) people who work (giving massages, acupuncture or reiki) get paid (“line their pockets” according to the author)
Personally, I find it very unsurprising that most oncology departments, around the globe, offer support from CAMs.
This is not specific to the NHS (btw Macmillan also offers this) and most staff involved in oncology know how particularly important the “psychological” wellbeing of the patient is when fighting cancer. Not only do such therapies increase your chances, but even when they do not, they at least ensure that you do not spend your last months/years in as much pain or worry as you might without such CAMs to support you.
I met many cancer experts and oncology professors in Paris when I was a child : my mom was apparently dying of some rare type of cancer called Gorham’s disease.
One of those professors, as I recall, built his entire career on the fact that he was the last person to “have a go” at the “vanishing bone” disease before my mom got better.
What struck me is how this gentle and very smart person had told me how he thought that was mostly a game of musical chairs and that truly, nobody knew why my mother’s condition had eventually improved. She was – at the time- the only survivor of this disease in the modern history of medicine.
The best medical resources in Paris had jumped on my mother’s rare exotic case… many protocols of treatment were designed and experimented.
And yet, in the end, it appeared as if the disease simply receeded (it came back and receeded again years later).
Radiotherapy, chemiotherapy, surgery… none seem to work.
Until the disease just stopped. Some bones even started recalcifying again.
They did, however, damage her thyroid with the radiotherapy so she has been taking pills ever since.
My point is : I knew what was going on in my mother’s life and I knew the barometer of her emotions, fears and hopes often resulting from her condition and apparently bearing on her condition too.
I could see how this game of chicken and egg was very important for her chances to become healthy again and for her “life as a cancer patient” to offer more than an array of painful and/and invasive procedures.
How you survive is often as important as how long.
Those were great doctors, as well as very smart and humble human beings. What still amazes me 35 years later was hearing them confessing how little “we” (I imagine they meant “the scientific community”) understood of the human body and the nature of such diseases. The more they learnt, the more they realized how little they knew… and this is what allowed them to keep learning more: keeping an open mind.
They were fully aware of the role of CAMs in medicine, fully aware of the role the patient’s family plays, and of the famous “placebo effect” which is one formidable, most efficient – and most affordable – way of treating people.
I do agree that CAMs need to grow into a more transparent and accountable structure. More trials and experiments need to take place so that charlatans can be exposed, the public protected etc.
But perhaps we can all be careful not to toss the baby out along with the dirty bath water?
They do not. If they did we would be using them as standard treatment.
It is true that some oncology departments (including the one where I worked as an oncologist) have an association with a centre offering alternative treatments. As far as I can tell the main advantage (apart from off-loading problems that could take up precious clinic time) was that the services they offered helped restore some of the sense of control that many people lose when they receive a cancer diagnosis. Having cancer is very disruptive to normal life, with the large number of hospital appointments that it entails, major surgery, prolonged treatment with radiotherapy, chemotherapy and other modalities, many of which can make you feel unwell. You are not even in control of your own body (actually we are less in control of our own bodies than many people seem to think). Of course having somebody make a fuss of you for an hour, with aromatherapy massage, reflexology treatments or whatever can help you feel better.
This is a very rare disease (only a few hundred cases have been described in the literature) but although chemotherapy and radiotherapy have both been tried for it, among many other things (none of them very successfully as far as I can tell), it is not a cancer. It seems to be a metabolic disease characterised by abnormal bone turnover and abnormal vascular development within bone, but the tissues affected do not show the cellular characteristics of malignancy. As far as I know the cause remains unidentified.
All the uncertainties of living with such a disease and its unpredictable behaviour must have been very stressful for your mother and everyone close to her.
The thyroid is easily damaged by radiotherapy if it is included in the treatment field, and thyroid supplements have to be taken to replace the thyroxine that it can no longer make. I have, however, seen a number of patients where other doctors have diagnosed radiation damage to the thyroid when the radiotherapy was given to another part of the body entirely, which illustrates how little most doctors know about the details of cancer treatment.
The other advantage of working with such a centre is that it is easier to know what therapies patients are having. For instance, we have had a number of cases of counsellors advising patients to stop their cancer treatment on rather dubious grounds, and also of “nutritionists” giving dangerous dietary advice (please note that such nutritionists are quite different from the properly-trained dieticians that cancer centres employ). Here our working relationship meant that we were able to intervene before serious harm could be done).
I know Edzard takes the view that such non-evidence-based services should not be offered at all, as they promote the acceptance of alternative treatments generally, which can certainly be harmful for reasons which have been discussed elsewhere in this blog, and also encourage woolly thinking and a belief in what is effectively witchcraft. However, while a patient is coping with a life-changing situation and at the same time trying to take in the huge amount of information they are being given about their disease and its management it is not very fruitful to try to change their world view still further, and many such therapies do provide a useful placebo effect. It is important that they are properly supervised, however.
my view on SCAM as a supportive/palliative cancer treatment is that we have an obligation to use our scarce funds on those that have the highest chances of success, i.e the ones supported by reasonable evidence, and not waste money and effort on treatments that are unproven and implausible.
What is the actual cost to the NHS? It seems that the actual therapists are volunteers, and the center generates income through training courses and donations. It seems like this could be a win/win/win – income for the center, supervision of treatment, convenience and no cost for patients.
1) using the NHS label was dishonest and illegal
2) using bogus therapies is unethical.
1) seems easily fixed
2) “The other advantage of working with such a centre is that it is easier to know what therapies patients are having.” It would seem that a situation like this would give the treating physician more input/supervision – focusing treatments on relaxation, TLC, whatever you want to call it – and avoiding the complications that Julian was talking about.
and in what way does this justify the use of bogus treatments?
the goals are better reached with treatments that are backed up by evidence.
“…the services this centre offered (including counselling, art therapy, music therapy, access to a social worker, help claiming benefits, as well as aromatherapy, reflexology and acupunture) were by-and-large helpful, much appreciated by patients and took some of the pressure off the NHS.”
It seems like the attending physician would be capable of determining the usefulness of bogus relaxation treatments.
I totally agree. However, the centre that I was referring to is funded as a charity and does not take any money from the NHS.
why do you think that matters?
waste of scarce resources is waste, regardless of the origin of the money.
and not employing the optimal treatments is unethical.
or not?
Private individuals are free to spend their money how they wish, however unwisely, including donating to charities and causes of all kinds, whether we agree with them or not. If that means a legacy to a cats’ home then so be it.
I never suggested that the patients in question do not or should not receive optimum treatment.
However the NHS has limited resources when it comes to supporting patients in other ways (as any GP how easy it is to get a referral to psychological services within any reasonable time frame, for instance) and the services this centre offered (including counselling, art therapy, music therapy, access to a social worker, help claiming benefits, as well as aromatherapy, reflexology and acupunture) were by-and-large helpful, much appreciated by patients and took some of the pressure off the NHS. And at least we knew what was going on there.
Is this any worse than going away for a weekend at at spa, or indeed buying any of the cosmetics and other dubious products that make up 95% of the stock in a typical high-street pharmacy?
“Private individuals are free to spend their money how they wish”
sure
“including donating to charities…”
yes, but the charities have a responsibility – legal and ethical – to use the funds optimally. and paying for bogus treatments [they offered also Reiki and similar nonsense] does not meet this criterion.
Charities must also operate for the public benefit, although the Charity Commission has hardly ever enforced this.
https://majikthyse.wordpress.com/2018/12/18/the-bell-tolls-for-quack-charities/
Professor Ernst – ‘charities have a responsibility to use funds optimally and paying for bogus treatments does not meet this criterion’
it’s difficult to know what the problem is. As has been said these centres are not funded by the NHS, The patients, as has been said by someone who would know, receive optimum treatment from excellent medical professionals. These medical professionals, as I said in a previous post, oversee the complementary therapies. No patient is forced to have therapy but they are popular. It has been explained far better than I can how valuable this support system is: it’s a welcome add on to help and support patients going through a difficult time.
I have worked for organisations offering free counselling to those with life limiting conditions ( to be clear – CAM free). These organisations rely on charitable donations. The public know exactly where there donations are going, and it is exactly the same criteria for donations to Complementary therapy Centres at hospitals. These complementary therapies are not considered bogus but valuable in offering comfort to patients undergoing ‘proper’medical treatment . Why deny them this?
Again, the general public is underestimated: you appear to have the opinion that the patients expect cure to come from the complementary therapy and therefore validation for what you consider bogus treatments. . Patients going through a rough time have many thoughts that you and I can only observe. I have had Reiki clients with cancer, some even, at their end of life, and not one has expected a cure and certainly none has been promised. In fact, from memory, it wasn’t discussed: these clients came to feel better, relaxed, reenergised. I can remember when Reiki first entered hospices – many years ago : it is now in most hospices and a lot of hospitals. Professor you may think it’s nonsense but it’s not the view of many medical professionals. Have you visited these centres and gleaned first hand their positive experiences?
As I said in a previous exchange with a poster who could not grasp that these centres are across the country in most hospitals, patients gain so much from these complementary therapies. Their is much kindness and a real motivation to serve and help those in need. Complementary therapists give freely of their time to do this because from experience, I can say it’s because it’s a privilege and you receive far more than you give when you volunteer, I urge everyone to give it a try.
It saddens me, and yes I admit I feel emotional, in the knowledge that those who consider CAM bogus would deprive patients going through a challenging stage of life the option to have something pleasant, supportive: relaxing amongst the harsher reality of medical treatment.
I know it’s late, but I am beginning to think the world has gone mad: we are talking about gentle and helpful options, not sending patients off with bottles full of opioids. Is there any one on this blog who can see the true nonsense of the discussion? Oh please don’t answer: I am done with this, but thank you for the opportunity to rant my thoughts Professor. A little reminder: Kindness is everything: check out the book: ‘the boy, the mole, the fox and the horse.’ : calming late night reading.
.
“gentle and helpful options”
meaning safe and effective?
Reiki???
Yes, the world has gone mad!
Or maybe “gentle and helpful”, meaning….”gentle and helpful”.
Julian explained the “helpful” part wonderfully:
“However the NHS has limited resources when it comes to supporting patients in other ways (as any GP how easy it is to get a referral to psychological services within any reasonable time frame, for instance) and the services this centre offered (including counselling, art therapy, music therapy, access to a social worker, help claiming benefits, as well as aromatherapy, reflexology and acupunture) were by-and-large helpful, much appreciated by patients and took some of the pressure off the NHS. And at least we knew what was going on there.”
Hopefully the “gentle” part is self-explanatory.
@Angela
Perhaps the poster has read what the NHS itself has to say about this. e.g. “The availability of CAMs on the NHS is limited, and in most cases the NHS will not offer such treatments.”
“The practice of conventional medicine is regulated by laws that ensure that practitioners are properly qualified and adhere to certain standards or codes of practice. This is called statutory professional regulation. Professionals of 2 complementary and alternative treatments – osteopathy and chiropractic – are regulated in the same way. There’s no statutory professional regulation of any other CAM practitioners.”
“Some complementary and alternative medicines or treatments are based on principles and an evidence base that are not recognised by the majority of independent scientists. Others have been proven to work for a limited number of health conditions. For example, there’s evidence that osteopathy and chiropractic practices are effective for treating lower back pain. When a person uses any health treatment, including a CAM, and experiences an improvement, this may be due to the placebo effect.”
This all sounds pretty much the same as the things many people post on this blog. People who think pseudo-medicine is just that and should not be touted to people with a terminal illness even as “helpful” or “comforting”. Please desist from telling us that “most” (UK) hospitals have SCAM centres. The NHS website says very clearly that’s an untruth.
The issue with these places for me is that they operate as a vanguard for dubious medicine.
If I open a massage centre and call it the “NHS Alternative Therapy Centre” or even “The Alternative Therapy Centre” and then claim within my text that the NHS refers clients to me. It establishes a degree of credibility, lent from the NHS which otherwise I would not have had. Also, however and more dangerously, it enables people who have far more dubious views to link sCAM practices to the same now established credibility – for instance a claim such as;
“alternative medicine centers such as ours are in use across the country and are now accepting referrals from the NHS, don’t wait for your doctor to refer you, come along to one of our alternative therapy homeopathic cancer treatment days for £199.99″ or book your complete course of homeopathic cancer medicine for £4500.00”
I have represented people who have literally emptied their bank accounts for such claims made by the unscrupulous.
Ultimately, a line must be drawn between established medical treatment and alternative therapies, if there is a link between the two – no matter how tenuous, the danger is that it opens the door to every crystal waving eccentric with a half baked idea of how disease may be cured.
I appreciate that many people require comfort, however, the duty is on the vigilant to ensure that the boundaries between medical treatment and alternative treatment are never blurred.
Positive feedback is sufficient to offer placebos to patients?
It’s okay to provide scams as long as the funds are generated through a charity?
Do members of the public who contribute the funds for the Natural Health School understand that the therapies provided are simply placebos? Or do those who donate, presume or believe the pseudo-medical treatments do more than provide the comfort of the human touch?
The people who do receive more than placebo benefits are the pseudo-medical treatments’ trainers and trainees.
At least all this will now be going on without the false impression of NHS endorsement.
That is little credit to HDFT, however.
@Leigh Jackson
Let’s hope so. I just pointed out on another thread what the NHS itself has to say about pseudo-medical treatments. Most compellingly: “The availability of CAMs on the NHS is limited, and in most cases the NHS will not offer such treatments.”
Comments from people suggesting that “most” or even “many” hospitals offer SCAM with NHS support deserve to be automatically deleted.
Frank Odds – this thread is about complementary therapy centres supporting cancer patients in NHS hospitals. That is what the essence of the discussion has been about.
I am in no way suggesting CAM is offered universally in the NHS: one only has to be aware of the campaign to drive out homeopathy (even though homeopathy was a part of ‘the deal’ of the NHS at its inception) to get the drift. And yes I had read what the NHS stance is.
However, I recall saying I was equidistant to 5 hospitals with cancer support centres that offer complementary therapies. One of those is Epsom hospital that has a centre called The Butterfly Centre, another is The Royal Surrey that has the Fountain centre; as I said I then randomly looked at NHS Hospitals across the country and in every case they had a similar centre either Macmillan or other offering complementary therapies. I gave up when each hospital showed the support centres. Now right or wrong that informed me they are widespread.
Your view is your’s – I stand by my comments under ‘THE NATURAL HEALTH SCHOOL’ and complementary therapies.
Frank delete all you like : at the risk of repeating myself: I know complementary therapies are not part of mainstream NHS services.
Just to clarify – until my retirement two years ago I was a consultant oncologist at the Royal Surrey County Hospital, and the Fountain Centre is the centre that I have been discussing. This is the only such unit that I have any personal knowledge and experience of. It is physically located within the hospital next door to the cancer out-patients department at the St. Luke’s Cancer Centre with a smaller office next to the reception of the radiotherapy department. It was set up by one of our treatment radiographers, who now works full-time at the Fountain Centre, and it offers invaluable services of all kinds to St. Luke’s patients, including providing information on things such as which insurers offer cancer-friendly travel policies and helping patients claim benefits. Much of what they do is aimed at helping patients feel better about themselves at a difficult time, and while the services offered include therapies of dubious merit such as acupuncture, there is no doubt at all that patients find them helpful. Of course the placebo effect plays a large part here, but that in itself is also valuable.
In my experience how the patient feels about the team looking after them is vital. It doesn’t matter if everything is based rigorously on the most up-to-date evidence (I would hope that is true in any case) if the atmosphere is cold and uncaring. At St. Luke’s more than anywhere else I have worked the ethos is one of everybody working together to put the patient’s needs first, and the Fountain Centre is part of this.
Dr Julian – yes I was aware this was your hospital, but it was not my remit to disclose. My family and I have been served very well there across different departments and we have much admiration for the excellent staff, so I think a thank you is due for your vocation.
I try very hard in my posts to not mention personal places/ details, but it seemed with the challenging responses I was receiving whilst trying to make a point, I had no alternative. It was an attempt to add structure to my point.
Yes I agree it’s very special where all disciplines work cohesively, accountable to those in charge of the patients’ optimum care.
yes, as long as those disciplines are appropriately qualified, supervised and fit within the regulatory structure of the UK medical systems. We do not want any wand waivers or weed pushers butting in to treatment to claim that because they lease a room in the Hospital or some GP occasionally says “go and have a bit of a rub of your back down the massage centre” that this amounts to membership of the MDT.
A line needs to be drawn this side, medicine, rational, scientific not perfect, that side – promises, quackery and pseuds.
@graham
Say Graham, you got any Psychiatrists getting paid for services in the UK Medical system ?
I’m aware of the work several psychiatrists yes, all of are of course fully qualified Doctors having specialised relatively early on in their prof education, they are regulated by the GMC and are members of the Royal College System.
@graham
“all of are of course fully qualified Doctors having specialised relatively early on in their prof education”
Getting an MD education simply means they learned the required material to pass the exam. It speaks little to what they understand about the mentally ill.
Psychiatry has long been questioned to be a science based medicine.
In other words, it’s a sCAM.
you are not a scientologist by any chance, are you?
RG,
That is not true of psychiatrist training in the UK
No I am not a scientologist.
my question was supposed to be directed at RG
The benefits of kind, caring attention and psycho-social support can all be provided without the deception involved in SCAM. Acupuncture is not risk free, especially not in the immunocompromised cancer sufferer. It can be (is actually) uncomfortable, is time consuming and does involve cost, albeit limited to cheap needles, rooms and personnel. There are non-invasive non-deceptive alternatives that can provide exactly the same care as this modernised medical archeology. Craniosacral, Reiki, and related nonsense based hand waving and body fondling may lack the invasive hazards of acupuncture.but they involve doctrinal elements that are repulsive to many and a petid promise of non-existent efficacy. Not to speak of aromatherapy and herbalism (including the cannabis hype).
No one doubts the value of ancillary cancer care, what is to be discouraged is filling it with unnecessary, deceptive and potentially harmful nonsense when the so called (mislabelled) placebo effect can be achieved with simple means based on humanistic honesty and integrity.
@Bjorn
“The benefits of kind, caring attention and psycho-social support can all be provided without the deception involved in SCAM”
Ummm Bjorn
There is no such thing that I have witnessed, and I know. The psycho care here is directed at prescribing toxic meds…. for a lifetime.
That’s it.
@RG
I am really sorry to hear that you have had bad psychiatric care. I hope you are able to seek better help.
@Bjorn
By your standards, all psychiatric care is bad, because it’s based on anecdote and not science.
RG,
Psychosocial support for cancer patients does not involve psychiatrists unless there are coexisting serious mental health problems (such as acute psychosis). It does, however, involve specially trained nurses visiting the patient at home, assessing their needs and making themselves available to deal with problems. It can also involve patient support groups, and in some cases financial grants to help with such things as transport.
Bjorn,
RG has previously told us that a close relative (his son?) has schizophrenia, which psychiatrists have been unable to treat to his satisfaction. This is a devastating illness, and as I am sure you know, treatment is very unsatisfactory, limited to managing acute psychotic episodes (which do respond to drugs) and trying to prevent relapse (again using antipsychotic drugs). The drugs used are significantly toxic (causing excessive sedation and movement disorders) and do nothing to prevent the long-term deterioration characteristic of this type of disease.
The failure of treatment to meet his (probably unrealistic) expectations of what is possible here, and also with regard to his own unspecified chronic rheumatological disorder may be a factor in his taking every opportunity to prosecute his own campaign against what he seems to regard as a conspiracy driven by the pharmaceutical industry.
One curious benefit of anti-psychotic drugs is that they were partly responsible for ending the practice of lobotomy (another effective way of calming an acutely disturbed and aggressive individual). Many of them are also useful in oncology in low doses for treating nausea and vomiting.
Unfortunately mental health services in the UK (and probably elsewhere) are seriously under-resourced, as most people aren’t very interested beyond wanting to avoid having anything to do with the mentally sick, and those suffering from mental illness are not in a position to be politically effective.
Bjorn,
You listed off a bunch of non-issues. Acupuncturists (here, anyway – not sure about the UK) provide their own needles when volunteering, no promises of efficacy (re-read Angela’s comments), those “repulsed” by what you call “doctrinal elements” wouldn’t take advantage of the free services, herbalism (including the cannabis type) would be under the treating doctor’s supervision (if used at all), etc etc.
What you didn’t mention is what you’re doing on a volunteer basis for cancer patients. It would be interesting and informative to hear how medical professionals are contributing in their free time.
@DR. JMK
Thanks Doc
I appreciate your sentiments, and the fact that you have great recall to my specific misery.
And you are correct
What free time?
“What free time?”
The same mythical free time that the current volunteers have.
@Dr. JMK
OK… you got me.
Like Bjorn said, where is the “like” button ?
I am sorry if I came through offensive, RG. I really meant what I said, that I hope you will be able to get better care if you are so disappointed with what you have. I missed the part about it being your son who is the patient. I hope he gets as good care as possible.
As has been pointed out, psychiatric diseases are more often than not devastating in their chronic, destructive character-altering cruelty for which there exists no cure, only problematic palliation. When the family is not provided with proper attention, it is no wonder they fall out of faith with the care provided.
Your pervasive antipathy of medicine would perhaps not have developed if someone had sat down with you and your family and taken time to explain and discuss the nature of such diseases and established the necessary trust that is so essential in such situations? Luckily, the past decades have seen large improvements in psychiatric medical care, but these are still cruel chronic diseases.
I have seen all too many cases where my colleagues (not psychiatry) have hastily thrown a diagnosis at the patient or relatives and told them we can do this or that without giving them time, trust and truth. Such patients loose faith and hope which they may seek elsewhere. They are easy prey for purveyors of so called alternative medicine who know how to use time and establish trust but fail the truth-part and offer only costly pipe-dreams. Then when the false hope also fails it is usually too late so we hear nothing more from the patient. But those lucky enough, tell of their miraculos recovery, which they attribute not to the real treatment they had before but give all credit to whatever they happened to pick up in their desperation.
I just recently saw a case where a woman with cervical cancer had been treated with everything modern medicine has to offer, and then some novel less proven things to tp it off. It was a very difficult journey for her. She e.g. described the internal radiotherapy as pure torture. What her doctors failed was establishing trust. She had unfortunately experienced waking during an operation and the doctors embarrasingly waved that off. This traumatised her irrepairably. She finished the therapy nonetheless. When the first follow up scan was done, the doctors saw that lymph nodes were still prominent. Instead of keeping hope and explaining that this might just be the healing process, they foolishly told her it might be that the treatment had not been successful. What she heard was that all was lost and she fled into the world of woo where she mopped up everything she could find. Eventually the swollen, but healed, lymph nodes had subsided and her peddlers of play-medicine rejoiced and shouted, “we told you so!”.
Now which is more likely, that this lucky lady was cured by the cruel, difficult and side-effect-filled modern medical therapy or any of all the credulous diets, food supplements, hand waving theatricals or whatnot?
Modern medicine is neither infallible nor easy.
@ Dr Julian Money-Kyrle
Your contributions on this site are generally excellent but I must take up your point about patients finding therapies like acupuncture valuable.
I have no doubt that acupuncture is a proficient placebo, though it is not entirely without risk. There have been cases of serious adverse effects. Placebo benefit is the entire effect where the effect is beneficial, not a large part. Which is to say that it’s not the magical needles per se that provide the benefit but the whole dramatic performance created for and centred on the patient.
Well meaning, no doubt, but that is all. However warm the caring that is the only benefit. Is it really not possible to provide TLC for patients without subjecting them to preposterous shamanic nonsense like acupuncture?
That smacks not just as an evasion of duty but a perversion of it.
“However warm the caring that is the only benefit.”
Warm and caring is the whole point. Sounds like a great match.
Absolutely – a perversion is exactly what it is
There are many other things that could be offered instead of “magical nonsense” that has no basis in reality and that has been demonstrated not to work for any purpose and that involves actively deceiving patients.
Simple massage for one, basic yoga or even tai chi – as long as no specific health claims are made. Even good old tea and a chat are often very welcome as are knowledgeable support and group work. None of these require deception and ridiculous fictional “energy” sources or non-existent meridians.
This would also side-step the problem of using cancer patients as guinea-pigs to train the next generation of SCAM artists all the while giving SCAM the false legitimacy of an NHS stamp of approval and a higher profile than it deserves. This is after all the whole point of them trying to get a presence in NHS hospitals in the first place – anyone who believes it has anything to do with altruism might be interested in Tower Bridge which I currently have for sale at a knock down price.
Leigh Jackson,
What I actually said was:
I was referring to the services offered over all, not specifically acupuncture, when I mentioned the placebo effect. As far as I am aware there is no good evidence of any other effect of acupuncture, though given the ritual and invasive nature of this modality it is quite a strong placebo.
Over the years I have spent many hours with patients trying, unsuccessfully in the main, to dissuade them from pursuing alternative treatments of all kinds. The worst offenders seem to be German clinics offering dendritic cell therapy and the like, and also a particular clinic with branches in Harley Street and Kent which has somehow managed (just) to keep the right side of the law despite clearly being run by charlatans. There is a certain mindset which I have encountered time and again characterised by a deep fear of the uncertainties inherent in conventional treatment and a naive trust in the reassuring claims made by purveyors of alternatives. I think a fear of loss of control is fundamental here. As it happens I am currently in the middle of reading “Living Proof” by Michael Gearin-Tosh (recommended by RG) which gives some insight into these thought processes, although that was probably not the author’s intentions . He was an Oxford academic who was diagnosed with multiple myeloma who turned his back on conventional treatment and ultimately proved to lie on the tail of the survival curve, living another nine years before dying of an infection which would easily have been cured by antibiotics.
However, these are not the patients who seek out the Fountain Centre. Much of what they do is either of practical benefit (information etc.) or else helps the patients feel better about themselves at a difficult time. If they are determined to try acupuncture, reflexology or whatever, I would much rather it was there than through an unknown private clinic where they might be brainwashed into trying something more dangerous (such as strange diets) or abandoning conventional treatment altogether. My colleagues and I have found the total package to be useful, and where there have been problems with specific therapists our mutual relationship has been good enough that they have been willing to address them, even if that has meant keeping the aromatherapist in order to negotiate letting go a particularly daft councellor.
Would that there were unlimited resources available to the NHS (or unlimited time available in my clinics)! In any case the placebo effect, however you harness it, is an essential component of managing the symptoms of cancer and its treatment. As a clinician working in the real world you have to deal with patients with all levels of education and all sorts of strange ideas, and the aim is to get them through effective but difficult treatment in a system where they feel valued, not to upset their world view even more than it has been already by their diagnosis, and lose their trust in the process. At times it can be a tricky path to tread.
Or as a relative of mine once put it (referring to a marital dispute) “this is not the hill I wish to die on”.
@ Dr Julian Money-Kyrle
With all due respect to other contributors to the blog who have given enormously to my education in these matters, this is one of the most interesting and thought-provoking things I’ve read on this blog.
Without a doubt, advocating for science-based medicine is critical. SBM is not perfect, but when it comes to value for money or lives saved, alt-med isn’t even in the race. You remind us, however, that in the real world where medicine is practiced and sick, often desperate people are fighting for their lives, life is not so simple.
When trying to affect change in government policy or even just spread the good word, it’s important to arm yourself with the big guns of facts and science. They don’t always work, but they are critical to bring along if you stand any chance at being effective.
But those are not the only battlefields. Sometimes, advocacy happens at the bedside, where a far more delicate and nuanced approach is necessary. Not only that, but as Dr. Money-Kyrle points out, we have to remember that it is the patient at the centre of this universe.
I, for one, have to remember that.
I appreciate your thoughtful reply. I also appreciate that there must be many difficult and delicate decisions to be made to provide every patient with the most appropriate treatment within the limits of the possible in NHS medical care. It is a great responsibility for all concerned.
That said, I believe that the best way to gain and honour the trust and respect of patients is to be both caring and candid. The place of placebos in that context is a serious question. Some placebos are more egregious than others in terms of their potential to mislead patients, not simply in terms of lack of specific medical benefits, but also in terms of lack of scientific rationale to justify their use. Their only rationale is that some patients approve of them.
Traditional treatments like homeopathy and acupuncture are prime examples.
The invasive nature of acupuncture may make it a powerful placebo but it also makes it a potentially dangerous one – unlike homeopathic ultra-dilutions. Every needle carries a potential tiny risk. I take your point about having potentially dangerous CAMs performed under hospital controlled conditions. Homeopathy has now been discarded from the NHS. Why not other placebos? Homeopathy has its supporters amongst the public. There is no more evidence or science to support acupuncture than there is to support homeopathy. At least, there is barely any more.
“Medical acupuncturists” believe that the practice can help to relieve pain. They have a hand-waving “theory” as to how this may work; by which I mean that the “theory” is in fact nothing more than conjecture. The evidence is poor at best, NICE’s only recommendation being second line preventive treatment for migraine/tension type headache.
On the other hand the claimed benefits of traditional acupuncture stetch away to the horizon and the “theory” to explain how it works stretches beyond the bounds of science to disprove or confirm. “Qi” is not scientifically defined. There is as much evidence for the existence of meridians as there is for unicorns. Traditional acupuncture may be appealing to some members of the public, for whatever reason, but so is chocolate. Popularity should be neither here nor there from a medical point of view. From the caring point of view let us find ways of providing it which do not depend on and serve to prop up nonsense on stilts.
IMO medical treatment in the NHS should be compatible with science (our best understanding) and best evidence, as is the case with NICE. In addition to this ethos, hospitals should apply the values of compassion and care. Let’s treat patients as grown-ups, let’s educate as we seek to heal and care.
Having read a lot of the comments I just feel I need to say a few words , I am a qualified I.T.E.C teacher who worked in an established school in Leeds , I was approached by Leeds university hospital to treat some patients and was awarded an I.T.EC award that was received in London at the General Medical Council
Björn Geir – so there is value in ancillary cancer care? ‘ Placebo effect can be achieved with simple means’ you say.
Just curious, but once the complementary therapies are removed like acupuncture, reflexology, Reiki etc which you so despise what do you set in their place?
Just a reminder that no promise of cure is allowed in these centres; counselling is not hands on, there is no hand waving and certainly no fondling ( or one might see the blue light brigade intervening) .
Reflexology, Reiki, aromatherapy massage and similar are extremely relaxing and comforting for the patients. To provide the replacement placebo you suggest….. ?
@Angela
If you gave it some thought without automatically applying your uptightly preconceived opinion of me, you might understand that my attitude is that of critical sorrow, not contempt. But you choose to read my comment like the devil reads the bible, so it is no wonder you cannot grasp such simple concepts as the difference between temporary gratification and genuine healing built on trust and honesty. If you think that many practitioners of the theatrical pseudotherapies you mention share your credulous “no promise of cure”, you must be living in a very small bubble indeed.
Bjorn Geir ‘if you gave it some thought’ I always give it thought before responding Björn, unlike those who use this blog to denigrate those with a different view. And I certainly have no ‘uptightly preconceived opinion’ of you. After all that would be rather foolish and inappropriate.
No I was responding as succinctly as I could to your points. I have tried to share my knowledge of these support centres. My knowledge is not the all knowing kind I admit, but as far as I know these complementary therapies are administered in a safe environment overseen by the medical professionals in charge of the patients.
I read in your response the following – hand waving, fondling, doctrinal elements repulsive to many, the deception involved in SCAM ,acupuncture: the cheap needles.
‘Deceptive and potentially harmful nonsense’ you call it and I disagree..I am not the one living in a bubble : just sharing what I know, but now you are widening the subject and expecting my knowledge to include ‘no promise of cure’ for all practitioners.
I asked about placebo and you wander off in a different direction, still denigrating CAM.
You suggested the placebo affect can be ’
achieved in another way. I asked how? I am interested and there is nothing remotely personal meant. If I was you I would question who has the the uptightly preconceived opinion’.
Tediously, in a nutshell : I am commenting about complementary therapies in hospital support centres. I am not informed about all CAM practitioners and what they say ( because that would be assumption gone AWOL) but having said that , in 40 years using CAM i have had the most professional and knowledgeable practitioners, and none had not only promised cure but referred to medical professionals when they saw fit.
@Angela
1. If those practitioners were knowledgable, they wouldn’t be practitioners.
2. If they promised cures, they were offering you a cheque that their skills couldn’t cash.
Thankfully, some were at least smart enough to refer to real health professionals.
Just so you know, I fail to understand most of what you write. I suspect I am not alone.
One thing that is clear to me, however, is that you have yet to grasp the fact that anecdotes, no matter how many, are not evidence. I would suggest you put your keyboard down and go chew on that for awhile.
Ron Jette – ‘if those practitioners were knowledgeable they wouldn’t be practitioners’ i’ll pass that onto my acupuncturist: 7 years’ training and a hard worked for PhD. I assume you exclude GP’s in that statement?
‘If they promised cures…….’
No, in 40 years no one has promised me a cure.
‘’Just so you know I fail to understand most of what you write. I suspect I am not alone’. You suspect…. ok.
You don’t like anecdotes …..ok.
‘I suggest you put your keyboard down and go chew on that for a while’.
The image of chewing on a keyboard was quite funny…..so thank you for that.
@Angela
Your acupuncturist is hardly a health professional. He trained for seven years to perform the equivalent of seal tricks that do nothing to help sick people. Unless they are buoyed by him balancing a ball on his nose.
Peace out. I feed the trolls only once per day because it’s fun. After that, it becomes tedious.
Ron Jette,
“I suspect I am not alone.”
Obviously you aren’t. For some reason, the idea of folks volunteering to give cancer patients a relaxing experience without promise of a cure, etc is quite befuddling. The only two that seem to understand this are Julian and Angela – weirdly, the only two who have direct experience with it.
Maybe you should poke around the rest of Edzard’s site. Time and time again, folks come to the conclusion that these therapies are placebo, nothing more than a nice, relaxing experience. Which is exactly what they are being used for in this situation. Under the guidance of cancer centers. For free.
It’s almost as if Edzard made this post to highlight the commenters who blindly get their knickers in a twist simply with the mention of “alternative” rather than looking at the actual situation ?.
Happy chewing.
Ron Jette, Mark Thornton. Björn Geir et al – all those who are so against CAM that they use words like troll ( they used to be dolls, oh still are) and something about balancing a ball on his nose -RJ – that the seriousness of this discussion is lost. It’s too important to lose.
So because palliative care is important I hope you won’t mind one last round up.
Dr Julian ,although makes it clear his disapproval of CAM , still asserts that the patient-centred way is key to their well being. If that includes CAM support – placebo – so be it. He is the one who has been at the coal face, making decisions. We can I am sure agree on that .
Skeptics would like these support centres removed (God forbid Good Thinking target them) because they feel the NHS endorse the therapies, There are issues about donations, an inclination to think CAM therapists are doing it (even freely) to further their careers.
Advertising needs to be addressed – too many claims – I thought the nightingale collaboration has sorted that one, but evidently not.
Any which way, you guys want rid and no thought is given to the patients. Now that is heartbreaking because if you had had experience with those patients sadly at end of life or doing their best to survive, they need endless support. It’s the families too: the child who says ‘mummy is happy today because she did something nice – had a massage and it made her feel better after her chemo’ . I have had the privilege of much interaction with families/patients in this position: each is unique in response to receiving bad news : there can be anger towards those trying to support (as Dr Julian will know) but a good trained therapist is used to every emotion. CAM centres offer those therapists who not only listen but enhance patients’ lives and their families’ lives too. Shame on those who have no compassion or empathy and would remove that support.
How many of you have volunteered your time to help those struggling ? We had a large number of male volunteers, and excellent they were too. So something to think about? The NHS is struggling and you want volunteers removed because they don’t suit your criteria. Sad, sad and more sad.
There are a lot of accusations of anecdotes being meaningless : when does an anecdotes become an experience or the other way round ? On what basis are they meaningless? i keep a great book at my bedside called Man’s Search for Meaning by Viktor Frankl : it’s valuable to remind me that his story is based on experience and is not referred to as an anecdote. But also a reminder in valuing humanity. We should all be following that example not accusing those we disagree with of being trolls etc etc.
Should anyone be interested in learning more, or even being involved with, palliative care I recommend two books, both by doctors:
The first one is With the End in Mind by Kathryn Mannix – Palliative-care Consultant. And a new book by Rachel Clarke A Doctor’s Story of Love and Loss. Rachel was drawn to work in palliative care after hearing a dismissive remark about s patient by an oncologist. She writes about how she found different ways to deal with death ie in hospice setting, and how special and present end of life can be.
I won’t be posting on this again but will hold on to hope that all is not lost.
@ Bjorn Geir
absolutely – you have only got to read practice leaflets, professional websites or even practice adverts from SCAM practitioners which more often than not, in defiance of ASA guidelines and supposedly of their so-called registering bodies, contain the most arrant promise of cures for all manner of disease and impossible health promotion.
I have personally reported numerous of these to the ASA and had many taken down or altered as a result.
If they are willing to do this in a public space one can only imagine what is promised in the privacy of a consulting room. A recent advert in a local magazine offered to cure fibromyalgia/ME and a host of other ailments by channelling energy from the Archangel Michael in another Galaxy through the therapist – for a fee.
A recent search for another matter turned up dozens of “therapists” advertizing NLP and touch therapy (both well discredited) for psychiatric problems of all kinds at exorbitant fees.
Reference has been made to SCAM therapists being “professional and knowledgeable” but I would aver that most patients are not in a position to make this judgement. They will believe a convincing and seemingly sincere person with the trappings of a “therapist.” They won’t have the benefit of having 40 years of medical experience and the same period studying and investigating SCAM – and most importantly a sceptical frame of mind.
Most importantly these people will be very vulnerable, often desperate and easy prey.
They will be impressed by meaningless certificates on the wall, pseudoscientific bunkum and word-salads, and false offers of hope. Worst of all they will be encouraged by anecdotes and testimonials, the worst possible kind of “evidence.”
I find it very sad that people who ought to know better continue to defend these charlatans and encourage vulnerable desperate patients to enter their maws to be deceived and bilked all because of “blind faith” and a complete lack of critical judgement.
There ought to be tougher regulation to prevent the worst excesses of these practices and much more honest appraisals on the NHS website making clear how useless most of these practices have repeatedly been shown to be.
BTW have you seen the December “A Synthesis of Systematic Reviews” on Acupuncture for Chronic Pain from Leeds? Lot of hand-waving but tl;dr there is still no real evidence that acupuncture is much use for anything much, or any better than sham acupuncture/placebo for chronic pain. But they just don’t give up do they?
@ Angela
I fail to see what the gender of the volunteers has got to do with anything.
You miss the point – it is PRECISELY because we ARE thinking of the patients that we are concerned about these SCAM artists practising on them and making false claims about symptom relief or whatever and deceiving vulnerable people and their families.
I have also made the point about the underlying aim which is always to raise the profile of SCAM with the blessing of the NHS so that more and more people will drink the Koolaid and start to believe the “fairy magic” and start handing over their hard-earned cash for this witch-craft and bottled water.
Have you really still not learnt why anecdotes are useless as any kind of evidence? They are just stories, biased and with N = 1 – unreliable chinese whispers.
Here is what Logic of Science has to say about anecdotes:
“In summary, using anecdotes as evidence of causation commits a logical fallacy, which means that anecdotal arguments must be rejected. Further, anecdotes don’t give you a fair representation of the effects of X on Y, nor do they account for potential confounding factors. Therefore, anecdotes are worthless as evidence. They simply cannot demonstrate causal relationships. if you want to know whether or not X causes Y, the one and only way to do it is by conducting large, properly controlled studies that account for confounding variables. Nothing else will suffice. It doesn’t matter if you have “seen it work,” it doesn’t matter if something has been used for centuries, and it doesn’t matter if a symptom has been reported in a database like VAERS or printed on a package insert. Unless proper scientific testing has shown that X causes Y, you cannot conclude that there is a causal relationship between the two.”
Anecdotal evidence cherry picks the best stories. You don’t hear about all of the unsuccessful cases because people are less likely to talk about them.
For the anecdotal evidence, the individuals may have been cherry-picked for their stories, or perhaps they came forward with the stories on their own initiative. Either way, their results are not typical. Unfortunately, our minds are wired to deceive us. We tend to place a higher weight on dramatic, personal stories and to create causal connections. To get the true picture, you have to go beyond a handful of impressive stories and get the larger context that a representative sample provides. That is why the Randomised controlled trial was invented – QED.
But sure – you carry on believing all the anecdotes and great testimonial you hear saying that homeopathic water cures in-growing toenails or whatever – you do understand that nearly all these SCAMs were just made up out of thin air right? That hardly any of these guys had any kind of understanding of how the human body works or how electricity or “quantum whatever” works or physiology or biochemistry or pretty much anything else? That nobody has ever found a meridian or qi and that homeopaths can’t identify what’s in their little bottles once you remove the label and that chiropractors can’t agree on where the subluxation is if you give them the X=rays “blind?
My favourite is the 11yo girl who debunked the nonsense that is “therapeutic touch” by a simple but devastating method 20 years ago – not that is stopped true believers peddling it. spoiler – it doesn’t work!
So no – anecdotes are useless as evidence – they may be a very moving story of one person’s experience, but they do not mean that X works for anything. Humans are very easily swayed by their experience – and by the post hoc ergo propter hoc fallacy – surely with all your “experience” you must be aware of this??? Not to mention confirmation bias and all the other logical fallacies we are all subject to – that’s why we invented “science” to make sure all these are accounted for and eliminated. Human interest anecdotes just muddy the waters and and prejudice people’s minds getting them to believe things on an emotional basis that just aren’t TRUE!
If we believed anecdotes we’d still believe in the four humours, witchcraft, a flat earth, hobgoblins, blood-letting, leeches, burying cats at cross-roads and god knows what else!
The plural of anecdote is NOT data.
mark,
“I fail to see what the gender of the volunteers has got to do with anything.”
Angela’s comment was to you, Ron, and Bjorn. She’s assuming you are all male. And you are free to volunteer.
“You miss the point…etc etc”
The point is that the cancer patient will be sent, if they want to, for a nice relaxing experience as a break from their treatment. From what I hear, cancer treatment can be quite taxing. That’s all anecdote, though – maybe there’s data out there that definitively proves whether or not cancer treatment is stressful on the patient.
Either way, I think the patient is fully capable of determining for themselves whether or not their experience at the centers are relaxing. It’s not rocket science.
I know you are being ironic here, but for the record I think you will find that most studies evaluating cancer treatment consider these issues, usually through standardised and validated quality of life assessments, even if the primary end point is something along the lines of overall survival or objective tumour response.
I am quite sure that in most cases, just the knowledge of carrying cancer in the body is stressful, let alone treatments.
I would agree with you, but not as stressful as the possibility that you might have cancer without knowing for certain.
Julian,
That wasn’t meant to be ironic – I would hope that cancer treatment studies consider these issues and factor the results into a patient’s treatment plan.
In terms of Edzard’s post, it seems that the patients already have a treatment plan, and the center(s) are being utilized under the guidance of their plans. At that point, the value of a relaxing experience should be pretty easy for the patient or their doctor to evaluate – and adapt the plan if needed.
When I said “From what I hear, cancer treatment can be quite taxing”, I meant that quite literally. Anecdotes from friends, family, and clients…and all of them appreciate people like Angela and the help they provide more than you can image.
Or maybe you can imagine.
@ jm
thank you for translating – I find most of Angela’s comments ambiguous and impenetrable as well as being beside the point.
the point has already been well made that most conventional docs don’t actually have a lot of “free time” between actual real work treating patients with science based medicine and keeping up with the literature and training in stuff that actually works. Keeping up to date with 200 year old magic is a little less arduous.
So in the main they can be forgiven (whether male or female) for not spending what little is left on deceiving their patients that SCAM acupuncture/aromatherapy/reiki or whatever might alleviate the nausea/anorexia or other symptoms from the nasty chemotherapy etc.
To repeat myself yet again – the objection is not to giving someone a nice massage or a head rub or some other non-deceptive soothing relaxing treatment. The objection is to cloaking the “therapy” in some mystic nonsense such as aromatherapy/reiki etc and claiming that a specific tincture/essence/energy/qi or (other non-existent force that has never been shown to exist) will be used to relieve the patient of their side-effects either of the cancer or of the treatment.
Nearly all of these SCAM therapies are based on “magic” and pseudoscience and have been clearly demonstrated NOT to work – so their practitioners are practising deceit on vulnerable people. Why is it so difficult to understand this simple point? I gave the clear example of therapeutic touch being debunked by an 11yo girl 20 years ago – YET it is still being practised unashamedly by SCAM artists today. Old woo never dies.
Nobody is denying that having cancer is stressful – this is simply whatabouterism. But someone saying aromatherapy “helped them” IS an anecdote and is NOT evidence of anything. A standard non-deceptive massage would do the job just as well.
Every day the postman comes to my door and my dog barks and the postman goes away. My dog is firmly convinced HIS barking makes the postie retreat – it works every time! He doesn’t realize he would go regardless. Classic post hoc fallacy.
So it’s not about whether patients find the therapy relaxing – it’s about whether they are BEING DECEIVED into thinking SCAM therapies have special properties rather than the placebo effects of the non-specific properties of “caring” interventions of hands-on therapies and mystic woo or the theatrical placebos involved.
Why is this so difficult to understand? Why not provide the caring intervention WITHOUT the deception and the pseudoscience if they REALLY cared?
Instead of all the anecdotes which are all just chinese whispers and “my second cousin once lived next door to a guy who once had a girl-friend whose grandmother knew a guy who……..” and only relate to extreme stories because these are the only ones worth re-telling – why don’t these people produce REAL scientific studies that prove these things work.
Studies as simple as the 11yo girl did………oh, I forgot – real studies always tend to show they DON’T.
mark,
The point has also been made that nobody has free time. But, there’s no need for “keeping up to date with 200 year old magic”. I’m sure there are ways you could help without having to learn reiki or reflexology.
“But someone saying aromatherapy “helped them” IS an anecdote and is NOT evidence of anything.
That’s not what’s happening. Angela has tried to explain to you you (several times) that no claims are being made whatsoever. You keep going on and on about a non-issue.
“oh, I forgot – real studies always tend to show they DON’T.”
Real studies seem to conclude that these things are pretty safe, and nothing more than a nice relaxing experience. Which is (literally) just what the doctor ordered.
Thats what the problem is though, the doctor has not “ordered” it or “referred” them for treatment. If that has happened then FTP proceedings loom for that doc.
There is no referral from a NHS doctor to a centre for treatment. There may well be standard letter stating something along the lines of “why not get yourself booked in for a bit of a rub at the x centre” but It will not say “I refer this patient to you for a long session of whispering and hocus-pocus as an adjuvant to his surgery”. We must be clear.
I have no quarrel with the former but the latter crosses a boundary.
graham,
This is from their site: “Our highly qualified therapists offer a course of FREE treatment to patients and carers affected by a cancer diagnosis following referral by their healthcare professional. ”
Problem solved.
From the Ogden site.
“A referral from a healthcare professional involved in your care is required to access a course of complementary therapy treatment. Each session includes a full consultation with our therapist to ensure the most appropriate therapy for you. The treatments offered are”
I object to this being a referral, such language implies a professional relationship between treating clinicians. It isn’t its a nice rub, or a needling or a weird pinch.
I don’t believe it’s a problem, I believe that it should be labelled properly so that the people who believe in this hocus pocus don’t utilise this as a gateway for spreading the lie that they practice real Medicine.
graham,
First you said “Thats what the problem is though, the doctor has not “ordered” it or “referred” them for treatment.”
A little over six hours later (after finding out that the doctor has, in fact, referred them for treatment) …”I object to this being a referral”.
Are you sure that the labeling is what you object to?
Jm,
I dont believe the doctor has referred them, the earlier post makes this clear, its the site itself that indicates the patients have to be referred.
In reality I dont believe that this is a referral. It may well be for insurance purposes (if they have any) that the patient has to come to them via a doctor who has confirmed that they are fit for a session but that is not a referral.
Yes, the label is the problem, that exchange that takes place between qualified pro’s is terminology consistent with medical practice. A GP may refer to a surgeon, a surgeon may refer to an oncologist, a oncologist may refer to a radiologist, none of them may refer to a Reiki healer.
I may also add that from a medico – legal standpoint, refusing a professional referral may have implications when assessing whether the patient is actively contributing towards self recovery or is not cooperating. Non cooperation can have ramifications on future treatment. A refusal to see a therapist for a placebo does not have that impact.
They may say, “a lot of patients gain benefit from a relaxing session of having a Millennial wave their hands about over them while chanting about energy” or “get yourself a good massage” (I see nothing wrong with that by the way). Describing this a referral confers a credibility that does not really exist.
The site implies that only a doctor can refer, however, what is missing here is the fuller text which should read something like
“anyone can access these alternative therapies, they are available across the community for a fee, however, if you want to access them free at our centre then you have to have a doctor has to approve that fee remission”
You see the difference, I have not changed my mind in 6 hours. I have reacted to the absurd suggestion that a self respecting doctor would consider this a referral – no doctor, in my opinion, fit for practice, would consider referring a patient as a serious treatment option.
I am not aware of any evidence or rationale that indicates less hazard from acupincture or other SCAM, when offered free of charge.
graham,
“I dont believe the doctor has referred them”
Referrals aren’t a belief system. And when talking about cancer patients, they’re pretty important.
“They may say…“get yourself a good massage” (I see nothing wrong with that by the way).”
Massage (like the other therapies mentioned) is a pretty broad category of bodywork. Not all massage types would be appropriate, and that will vary depending on the type of cancer.
Not all cancer patients will disclose that they are being treated for cancer…for whatever reason. Immunocompromised patients have different needs than the ‘general public’ – and centers like the one in question are geared toward those needs.
Massage (and the other therapies) aren’t appropriate at all stages duing cancer treatment. Ideally the treating doctor knows that, and advises their patient accordingly.
Etc, etc, etc.
So a referal from the cancer patient’s doctor isn’t just a belief system, legal documentation, or insurance paperwork – it’s important enough that all of the “alternative” practitioners I know won’t see cancer patients without one.
Comment threads like this one are pretty important, too. Too many therapists blindly assume that a doctor’s referral is an informed one, and proceed accordingly. More therapists need to be aware of the fantasy world that some doctors live in (chanting, hand waving, magic) – and do a better job of making sure the the referring doc isn’t some whackaloon flippantly saying “go get yourself a good massage (or acupuncture, reiki, etc)”.
I have my doubts that Bjorn is a doctor (or a practicing one, anyway). But his comment “I am not aware of any evidence or rationale that indicates less hazard from acupincture or other SCAM, when offered free of charge.” is important. Nothing is without risk – but the risks from the mentioned therapies are easily managed, particularly when coodinating with the treating physician.
Hopefully you’re not a doctor. If you are, hopefully you don’t see cancer patients.
Just as a matter of information – the Fountain Centre has already been mentioned here several times. Their website mentions several SCAM therapies as well as other options. It includes the scammiest of all homeopathy. Various claims are made – let’s just take acupuncture…..
Fountain Centre
“Acupuncture is a traditional Chinese technique which uses fine needles to balance the body’s energy flow and can help provide relief from many symptoms. Find out more on the British Acupuncture Council website”
(see right there – there is zero evidence it balances this mythical energy flow but THERE IS A STRAIGHT OUT CLAIM THAT IT CAN PROVIDE RELIEF FROM MANY SYMPTOMS.)
They then provide a direct hyperlink to the site of the British Acupuncture Council who helpfully provide a list of factoids of conditions from Acne to Vertigo for which they believe acupuncture to be helpful (and for which there is no compelling evidence in fact.)
The site then goes on to list some of the symptoms:
“Cancer and the treatments for cancer are associated with various symptoms. Fatigue is the most common symptom reported by survivors of cancer (Johnston 2007). Forty percent of people with early or intermediate stage cancer, and 90% with advanced cancer, have moderate to severe pain; up to 70% of those with cancer pain do not receive adequate pain relief (Paley 2011).
(There are many conventional options for adequate pain relief and there ought to be no reason for cancer patients to suffer unnecessarily. There is no evidence that acupuncture is helpful in this situation.)
“Hot flushes are common in women with a history of breast cancer but, while hormonal therapies are known to reduce these symptoms, they are not recommended for these women due to their potential unwanted effects (Rada 2010).”
(Hormone therapy is by no means the only option here so this is misleading. Acupuncture has not been demonstrated to be a useful alternative.)
“More than 70% of seriously ill patients with cancer suffer from xerostomia and the associated problems of swallowing, chewing and speaking (Meidell 2009). Leukopenia and neutropenia are common side effects during cancer treatment (Lu 2007). Many patients undergoing chemotherapy experience nausea and vomiting (Gralla 1999; Hesketh 1998). The symptoms can be severe, impairing a patient’s quality of life (Osoba 1997), causing emotional distress (Love 1989), and aggravating cancer-related symptoms such as cachexia, lethargy and weakness (Griffin 1996; Roscoe 2000).”
(These effects can indeed be miserable but there are many options available – acupuncture has not been demonstrated to have effects greater than placebo in well conducted studies.)
Their own so-called “evidence” is full of weasel words like these:
“The review found there was a shortage of good quality trials”
“Two small randomised controlled trials showed that acupuncture may be more effective than sham acupuncture….. but further data is needed to make a convincing case.”
“though the studies were of poor quality”
“provide mixed results from which it is hard to draw definite conclusions.”
“the results were promising but very much preliminary.”
Bear in mind that these poor studies with equivocal results WERE THE VERY BEST THAT THEY COULD DIG UP TO PUT ON DISPLAY ON THEIR FLAG SHIP WEBSITE! The great mass of the rest of acupuncture studies are even worse showing no difference between sham and “real” acupuncture, demonstrating that it doesn’t matter where you stick the needles, if you just “prick” the skin with toothpicks rather than pierce it with needles, or even if you use a smoke and mirrors approach and stick the needles in a dummy plastic arm making the patient believe that are receiving acupuncture instead.
In other words demonstrating that acupuncture = non-specific placebo effect.
To paraphrase Ben Goldacre – if there are shortcomings with symptom relief using conventional medicine then these need to be addressed – but that does not mean we should turn to quackery.
Problems with aircraft design does not mean we should invest in flying carpets!
Clear claims are being made that SCAM is aimed at relief of specific symptoms of cancer or cancer treatment on the basis of highly questionable or zero evidence just as I stated.
mark,
And? The center(s) offer a nice relaxing experience – support for the stress of cancer treatment, for both patients and their caretakers. Volunteers provide these services for free, and patients are there only with their doctor’s referal.
Does evidence determine a patient’s treatment plan, or is it a tool amongst other tools to determine a patient’s treatment plan?
Why do you suppose doctors are referring cancer patients to the center(s)? Why do you think you have a better understanding of the situation than the patients’ doctors?
While I agree with what you are saying, I think you are underestimating the size of the problem of chemotherapy-related nausea and vomiting, and perhaps misunderstanding its nature. I have been dealing this since I first started working in oncology in the 1980’s, before we had such drugs as ondansetron, granisetron etc. and almost all of our patients had to be admitted and rendered almost unconscious in order to give them chemotherapy at all. There is a huge functional overlay here, and some people are determined to vomit no matter what you give them (probably because what they have been told about oncology treatment is 30 – 40 years out of date). If you don’t get their antiemetic regimen right first time around then you will have a hard time getting them through their treatment; it is not simply a matter of alleviating unpleasant symptoms. Some individuals will simply refuse to complete the course, and somebody vomiting at home runs the risk of kidney failure and worse if dehydration interferes with the elimination of toxic drugs.
Once anybody has had the experience of being sick with chemotherapy then increasing their antiemetics is seldom effective. The initial problem may have been cisplatin stimulating the CTZ (chemoreceptor trigger zone) in the brain, but the psyche is quite capable of keeping the VC (vomiting centre) activated on its own.
ANYTHING that helps here is very welcome, and usually the two approaches that work are:
1. Alleviating anxiety (lorazepam (Ativan) as a premed is helpful in many cases, but so is massage and being fussed over, and being physically removed from the environment where treatment is to take place)
2. Any other mumbo-jumbo that the patient believes in, regardless of what it is, provided that it doesn’t pose a worse hazard
Actually in practice the people who refuse to complete the course are usually young men with testicular cancer who haven’t seen enough of life yet to realise that they are mortal, and don’t like to be bossed around. Unfortunatley these are the ones in whom chemotherapy makes the difference between rapid death and another 50 years or more of healthy life. Most people with cancer will put up with anything, though I believe that they shouldn’t have to if it can be avoided.
Julian – Emily Rosa was only 9!
https://en.wikipedia.org/wiki/Emily_Rosa
Les,
I remember reading a post about Emily Rose recently but I can’t find it in this thread and I think it must have been elsewhere, possibly posted by a different Julian (in most situations I am the only Julian but it is easy to forget that there are a few others knocking about).
mark Thornton – I was going to ignore your comment but then coincidentally today I heard that a dear friend has been diagnosed with cancer and will have chemotherapy until
September.
She has alongside her medical treatment been offered Acupuncture and Craniosacral Therapy at The Fountain Centre ( the one that Dr Julian has knowledge of). They also offer a wig service.
Forgive me if your post pales to insignificance.
@ Angela
sorry to hear about your friend – but as usual your comment is irrelevant and fully whatabouterism.
you seem to have serious problems with any kind of critical thinking and rational thought
Acupuncture has been repeatedly debunked as having any clinical usefulness for any condition. It is pure theatrical placebo.
Craniosacral therapy is pure humbug – is is totally implausible and scientifically and medically impossible on any front. The cranial sutures will be fully opposed and nearly fused in any adult – there is no possibility of “manipulating” them and anyone who thinks they can is self-deluding.
From this very blog: “The notion that CST is associated with more than non-specific effects is not based on evidence from rigorous RCTs.”
The “pulses” they believe they feel are from heartbeat and respiration. It is not possible to manipulate CSF through the adult skull. From Quackwatch:
” cranial therapy is silly. Its underlying theory is false, it has no therapeutic value, and its safety is questionable. ”
Please spare your friend if you really value her as a friend and value her clinical care – she does not deserve to have this ridiculous and totally disproven and medically impossible therapy imposed upon her. Neither does she deserve to have repeated needling for absolutely no proven gain beyond that of placebo.
I say this not because I have any skin in the game but because I have studied CAM for 40+ years and have seen the implausible and medically impossible and disproven therapies being touted over and over again. I have always carefully examined the evidence very carefully before disregarding the claims of any SCAM.
You seem to regard yourself as some kind of expert – but in fact you are far too gullible and uncritical in your assessments and way too swayed by simple anecdotes.
That you regard my careful exposition about the significance of not trusting anecdotes over scientific data and then announce it insignificant because your friend just diagnosed has chosen to have SCAM adjuncts……..???????
WTF? As always your thinking is irrelevant, irrational and totally beside the point. Just what exactly do you believe your remarks prove?
Your friend’s preferences are yet another anecdote, and while I am sure they are very personal and moving they are not evidence of anything. A million such anecdotes are still not evidence – please go back and read my previous post – it explains why. Your recent experience does NOT make what I said irrelevant – what is irrelevant is your disordered thinking, irrationality, non-critical thought processes and inability to process what you are reading here. You have very rigid thinking and seem incapable of processing new information – it doesn’t matter how many experiences you personally have had with SCAM – it doesn’t count as evidence.
It doesn’t matter how many of your friends use SCAM – science isn’t a popularity contest.
I hope your friend gets good proper medical treatment and recovers soon.
Angela,
I am sorry to hear about your friend. I like to think that she will be in the very best hands at St. Luke’s, and I was very happy to be treated their myself until my disease reached the point where it required specialist facilities that Guildford did not have, when they referred me to the Royal Marsden Hospital.
With regard to whether or not she chooses to have acupunture and craniosacral therapy at the Fountain Centre, this is something that she would be best off discussing with her own Consultant. As you know I do not believe in the effectiveness of these therapies myself, and I am a little surprised that she has been offered them at this point. If she has been told that they will help get her through side-effects of treatment which she has not yet had, that raises the question that these interventions are being used much more freely now than they were when I was still working in Guildford three years ago, which might be a cause for concern. However, I don’t know all the details and I don’t want to over-interpret what I don’t know.
If the opportunity arises, please ask her to pass on my best wishes to Charlotte at the Fountain Centre, and to everybody at St. Luke’s.
Dr Julian – thank you for your comments. I am a little in the dark myself of the actual process./sequence of treatments.
Whilst I posted what I heard, I do know that there have been many months of differing diagnoses leading to the chemotherapy treatment.
I think I understand your point, however from four or five different cancer sufferers in different parts of the country I have heard that their consultants have suggested acupuncture to help with chemotherapy side effects.
I have had a few friends treated at St Luke’s- they consider themselves fortunate to have such an excellent medical team. I wish you well in your treatment at The Royal Marsden.
If a consultant offered me acupuncture I would have no confidence in them.
I don’t want a consultant offering me placebos!
If you can’t do anything Doc just tell me, for pity’s sake!
mark thornton – just to clarify from my last post in case you consider it ambiguous:
You are against complementary therapy centres in hospitals. You are against CAM. I think you are ok with cancer patients having support as long as it’s not CAM.
I am stating the obvious but do you realise I am not important enough to help you? I have spoken about what I know, not the belts and braces and inception of these centres. I have no influence one way or another. If you don’t like it, go to the powers that be, and desist from haranguing those who cannot help you.
I stand by my view that support centres enhance patients ‘ treatments and experiences. And long may they continue.
support, like treatment, can and should be evidence-based
Taking my cue from Edzard’s comment.
Checking NICE for use of acupuncture in cancer treatment is not very reassuring.
Take “Bladder cancer: diagnosis and management” (NICE guideline [NG2]Published date: February 2015) as an example.
https://www.nice.org.uk/guidance/ng2/chapter/1-Recommendations#specialist-palliative-care-for-people-with-incurable-bladder-cancer
Section 1.8.4 refers to NICE guideline: Improving supportive and palliative care for adults with cancer – Cancer service guideline [CSG4]Published date: March 2004
In turn this guideline refers to a study which found a benefit for acupoint stimulation for chemotherapy induced nausea and vomiting: Richardson, M.A., Ezzo, J., Vickers, A., Allen, C., Lao, L., Zhang, G., Ramirez, J. Acupoint stimulation for chemotherapy induced nausea and vomiting. Alternative Therapies in Health and Medicine 7: 3, S28. 2001.
That review was subequently updated a number of times but was withdrawn from the Cochrane Library in 2014 when it failed to update.
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD002285.pub3/information#versionTable
NICE in this instance refers to out of date evidence.
In truth, it could be much worse than out of date evidence.
Examples of reasons for withdrawing a Cochrane Review:
Serious error in a Cochrane Review.
Following the conclusions of the published review could result in harm to patients or populations of interest (other than known adverse effects); and/or there are factual errors in describing one or more included studies that risk misinforming implementation or investment decisions about an intervention; and/or the reported treatment effect is inconsistent with the real effect shown in the reported data.
Confirmed serious error in a Cochrane Review as a direct result of the retraction of an included study.
This could occur if studies included in a Cochrane Review are retracted from publication, and an analysis shows that the removal of the retracted studies from the analyses in the Cochrane Review could lead to a serious error (defined above).
Scientific misconduct in the Cochrane Review.
This could refer to fraud or other scientific misconduct in the preparation of the review.
Serious breach of Cochrane’s conflict of interest policy.
A ruling by Cochrane’s Funding Arbiters that a Cochrane Review has seriously breached Cochrane’s conflict of interest policy.
https://documentation.cochrane.org/display/EPPR/Withdrawing+published+Cochrane+Reviews
My previous two posts appear to demolish the claim that acupuncture is known to help with chemotherapy induced nausea and vomiting unless other evidence exists unknown to NICE.
mark thornton – you continue to bang the same drum. You are not reading my comments. You are repeating the same old, same old.
With respect, this is not contributing to your cause. From what I can gather you are 100% against complementary therapies: your call and I don’t have a problem with that. After all you are in good company on this blog: that’s its essence – you know the anti CAM thing, SCAM thing. You have got the picture.
Now, although I am a proponent of CAM and have used it successfully for 40 years, this actually isn’t what our discourse is about.
You have chosen to engage with me under the heading ‘natural health school’ . I have given my experiences and the little knowledge I have about complementary therapy centres attached to hospitals. . Not once have I denigrated medical professionals: in fact I value them ( did you miss that bit or is that why you deem me impenetrable and ambiguous? – I am drawing on psychology knowledge now) – you know ‘how can she believe in conventional medicine and CAM simultaneously ?’ Well there are many of us who do. ‘You seem to regard yourself as some kind of expert’ An expert on what exactly? I wish I had more expertise with regard to medical knowledge, I wish I had the ability and time to help those in need more, I can assure you I am a long way from being an expert but I am expert enough to know you would rather use unkind words in the heat of the moment than actually read what I am saying.
I do think you need to calm down – it’s not pleasant reading. ……’what exactly do you think your remarks prove?’ Etc etc. I am not trying to prove anything. This is a blog, and sometimes like now I feel like giving up, because your assumptions are meaningless in the context of the subject.
You say the comment about my friend is irrelevant (in the context of the subject it is so relevant) ‘your friend’s preferences are yet another anecdote……they are not evidence of anything’. it’s not often I feel impatient but you are very trying. I had no say in my friend’s preferences : I know the hospital, and without doubt she will be receiving optimum treatment from the best oncologists. She was offered CAM alongside. Now whether you like it or not acupuncture is considered helpful with chemotherapy side effects. I didn’t know her situation until afterwards: she didn’t have any input from me – this is all within hospital setting. You give me too much credit. My guess is she will continue CAM if it helps: she has the choice. I have no idea how that translates to being anecdotal.
You said you have studied CAM for 40 years and then say: ‘from Quackwatch cranial therapy is silly’. Is that meant to be influential and scientific?
I don’t like your choice of words in your responses so have your platform, I won’t engage with you again because of your personal assumptions and frankly rudeness.
However, one last suggestion. You are so vociferously against the centres offering CAM, you need to find another avenue to vent your feelings. Remember, I didn’t create them: you need to physically visit these places, speak to the good doctors, volunteers and patients. I sincerely hope that helps.
@Angela
your thinking is so befuddled I wonder you can negotiate your way through breakfast.
I do read your comments but you make no case – instead you just rant about anecdotes and expect these to make some kind of evidence – as I keep explaining to you ad nauseam – they don’t!
There is an over-abundance of SCIENTIFIC EVIDENCE that neither acupuncture nor craniosacral therapy is of any use whatsoever in the treatment of chemotherapy side-effects or much else. But you would prefer (because of an inability to think in a critical fashion) to use anecdotes and “believe” in these magic treatments so that your friend and others can endure unnecessary discomfort and pain and false hope to gain at the very best a possible placebo effect gained under DECEPTIVE PRACTICES which the therapists KNOW TO BE DECEPTIVE and for which they KNOW THERE IS NO GOOD EVIDENCE!
I consider that I am an expert as it happens – I have been practising medicine for over 40 years and as previously mentioned have been studying SCAM practices and reading trials and reviews and other literature all that time as well as many of the blogs that closely watch the pseudoscientific community. You obviously don’t read my carefully phrased comments!
You seem to believe that being a skectic is CAM bashing – it is not. It is merely being a critical thinker and adopting a scientific approach to new information. It is the opposite to taking a gullible approach and believing everything that SCAM artists would have you believe, especially when most of what they say is highly implausible, scientifically improbable and often medically impossible.
At the end of the day I could find more entertaining things to do than reading yet another acupuncture study or a sad case of someone who died because he abandoned chemotherapy in favour of Tong Ren (really it’s a thing – look it up.) But if I can persuade just one person to stick with real therapy instead of abandoning it in favour of this lunacy my efforts will have been worth it. I can’t do that unless I have researched it in depth.
I think you need to question your own motives for pushing this nonsense and for your own uncritical faith in fairy magic.
Mark Thornton – ‘ your thinking is so befuddled I wonder you can negotiate your way through breakfast’ Well there’s a nice mature accusation. And you are a doctor? I am so fortunate in that the medical professionals I have met do not have your vocabulary. I find myself looking at the inaccuracies pointed in my direction. Does it ever occur to you that it is non-constructive in your mission?
I have never put forward my ‘anecdotes’ as evidence. ‘So that your friend and others can endure unnecessary discomfort and pain……’ that’s a strange accusation. And not a little insulting.
I wish for my friend and others suffering: the best medical care and support. I was not privy to her medical team discussion. I have no view, because unlike you I believe people do the best they can with what is on offer in difficult circumstances. If that includes CAM, that is their choice. When I work I abide by the rules, and I take that ethos to friends and family and community. I have two friends undergoing immunotherapy ( so I do understand just a little when Dr Julian describes his feelings.) Neither of those friends believe in CAM; we don’t discuss it and I would never encourage it. Each to their own is my motto : yet you insist on being completely irrational and assumptive about my motivation on this blog.
You have 40 years’ experience – in medicine? – and I have 40 years’ experience using and practising CAM. You say you are an expert, you accuse me of thinking I am an expert and I assure you I am no expert. Tedious isn’t it? If you are the critical thinker, I think the process sometimes lets you down.
You shout about deceptive practices and therapists know they are deceptive. How do you know? Have you observed such in these centres? I observe kindness, true support, non judgement : there is no doubt that these centres are an enhancement to proper medical treatment, under the medical team protocol.
‘If I can persuade just one person to stick with real therapy instead of abandoning it in favour of lunacy……’ now I assume you are talking about something outside of these centres. The centres offer support not a replacement for conventional medicine. You have got in a frenzy it seems about acupuncture helping with chemotherapy side effects. You think somehow I am advocating it to the detriment of patients. It has merely been that I have been told by various sources, that some oncologists suggest it. Please do not put me (in your mind) at a level of influence: it would be a big mistake : I have none and I would not want it. And I am not a acupuncturist, though I am grateful for mine.
‘I think you need to question your own motives for pushing this nonsense….’ Do you mean because I have commented on a thread ‘natural health school’?
So we conclude we are going around in circles: you know that inane ‘you said, I said’. So I thought with my psychotherapist hat on I would look
at our discourse objectively. Not easy I know, but here goes ( and forever after I shall not respond to you)
So active listening is key with clients. ( you know that thing where what is unsaid is often more important than the spoken word. So real listening is key to helping; not making decisions for your client but reflecting, nudging, paraphrasing so they can see what they need to get through a difficulty – whatever it is.
I think you mark thornton, have a hatred of CAM and CAM therapists. Let’s leave aside the science. I am sorry but however much you point me towards an organisation called quack…. something I can’t take it seriously because of the quack : my issue, maybe one day….
I bring you back to the cogent point / subject of this thread which is CAM centres However much it has been advised that you visit these places, talk to those with influence (after all they have been in place for many years, long before they have been pulled apart in this blog)
You as a doctor are in a position to plead to the powers that be and discuss your issues ( remember I am trying to be objective)
So I ask why are you targetting and insulting one person who does not have influence to change the very issue you are cross about. Because that person has chosen to share her quite limited knowledge of these centres? She has seen how beneficial they are? That CAM is completely supportive and not a replacement for medical care? Because being a proponent of CAM makes her gullible, a bad person?…….and on and on till the Psychotherapist says ‘ ok you don’t like (we try not to use the word hate) CAM and you have spent many years studying it and consider you are the expert. However, it’s not really dealing with your issue is it? A projection going on? How about if you think about what it is you want to change ……and go for it, but be clear who your ‘go to’ person is to achieve the change you so need.
Respectfully, mark Thornton, however much you want to accuse me of silly things, I can’t help you. Hopefully that’s clear enough (for me anyway,) so that we can drop our particular nonsensical exchange once and for all.
@ Angela
you keep saying over and over at various points to different people “this is my last word” but then you keep on coming back for another last word…….
“and I have 40 years’ experience using and practising CAM. ”
and yet instead of any kind of evidence all you have ever furnished is one anecdote after another, or your friend’s CHOICE of therapy as yet more proof of something or other.
You have no idea how any of this works or how a logical or scientific argument works.
You believe in CST which is one of the most ridiculous of ridiculous and impossible therapies.
You wander off into irrelevant and perplexing rabbit holes.
How I choose to engage with people on a blog about SCAM has got nothing to do with how I relate to people I see in a clinic.
It would help a great deal if your powers of comprehension were more fully developed – I have stated previously that I am not anti-SCAM – I evaluate every modality on an individual basis and the same with any individual practitioner. That is far more reasonable that the blind faith and uncritical acceptance that you and other followers have – an almost religious belief that is not subject to reason.
You admit that you will not even look at any of the websites I have recommended for you – afraid to have your faith questioned!
I do not have the time to engage with you further. You seem to lack the capacity to understand critical argument or to question your quasi-religiouis beliefs, and you will not explore any other knowledge that might question your strongly held views. You might like to dwell on why your beliefs are that fragile.
Your attempts at remote psychanalysis of me are hilarious – you might want to start a little closer to home.
@ Angela
btw – I explained to you in great detail WHY craniosacral therapy is medically and scientifically IMPOSSIBLE and why it is also contrary to the laws of physics – yet all you could grasp from that explanation is the phrase ‘from Quackwatch cranial therapy is silly’. You chose to ignore completely the entire rest of my careful explanation.
Do you understand why others grow so exasperated with your limited ability to understand simply stated arguments? The rest of what I said WAS indeed scientific and perfectly factual yet you deliberately chose to ignore it – as per usual!
Quackwatch is a site I have referred you to before. If you had bothered to visit it you would have learned that it is a highly respected site run by Dr Stephen Barratt who is a highly respected physician who has kept the site going for many many years in the face of bitter opposition and at great personal and financial cost.
He has exposed countless highly dubious health practices, health frauds and scams and has links to a wide variety of highly dubious and downright scary practices. He also reports on doctors who engage in questionable activities – his mission is to inform and protect the public. To quote from the site’s banner:
“Quackwatch is now an international network of people who are concerned about health-related frauds, myths, fads, fallacies, and misconduct. Its primary focus is on quackery-related information that is difficult or impossible to get elsewhere. To help visitors with special areas of interest, Dr. Barrett maintains 23 additional sites for autism, chiropractic, dentistry, multilevel marketing, and many other hot topics. Our Internet Health Pilot site provides links to hundreds of reliable health sites. Our Casewatch site contains a large library of legal cases, licensing board actions, government sanctions, and regulatory actions against questionable medical products. All of these can be accessed through the “Visit Our Affiliated Sites” drop-down menu above.”
But of course you are such an expert in your own mind you never bothered to follow up any of the links I suggested to you. You should have garnered from my simple explanation that CST is complete nonsense, but you ought to take it from a respected authority that if Dr Stephen Barratt says it is “silly” then it really is.
But of course with all your “anecdotes” in your mind that outweighs my clinical knowledge, my careful medical and scientific explanation and the expert opinion of Dr Stephen Barratt who is an expert in these matters. Who are we to contradict your anecdotal “expert opinion” when you can’t be bothered to read a simple paragraph of explanation or link to a website of expert evidence. You just “know” that this nonsense “works” because of course it does in spite of all the evidence to the contrary.
You just keep sticking your fingers in your ears and going “nah nah di nah nah” and I’m sure it will all work out fine – but it won’t change any of the facts.
If you persist is living in an echo chamber where everybody “believes in magic” then your preconceptions won’t be challenged. Try some critical thinking outside your comfort zone on Quackwatch or Science Based Medicine or the side-bar of this blog and have your beliefs challenged if you dare,
Something tells me they are far too fragile for you expose them to the cold light of day.
Professor – well if anyone is in a good position to do something about it, it’s surely you.
> 1000 papers in the peer-reviewed literature
> 50 books
> 600 lectures
_______________________________
is that enough for you?
I am now retired
@Angela
Professor Ernst has accomplished more in retirement than many accomplish in a career.
@ jm
” I’m sure there are ways you could help without having to learn reiki or reflexology.”
my point quite clearly is that keeping up with “real medicine” is quite clearly a lot more time-consuming than keeping up to date with homeopathy, reiki or any other pseudoscientific crap which is made up as you go along – that surely ought to be obvious – no?
“That’s not what’s happening. Angela has tried to explain to you you (several times) that no claims are being made whatsoever. You keep going on and on about a non-issue.”
Not so – Angela has repeatedly said there is “no promise of cure” – there IS quite obviously implied promise of alleviation of SIDE-EFFECTS from chemo/ stress etc. She has said so. There is therefore deception involved.
“Real studies seem to conclude that these things are pretty safe, and nothing more than a nice relaxing experience. Which is (literally) just what the doctor ordered.”
Acupuncture has repeatedly been shown to cause infections, pneumothorax etc – it may be rare but side-effects from a treatment with no known benefits is a very poor cost/benefit ratio.
You both keep MISSING THE POINT about deceiving patients – it is WRONG TO LIE TO PATIENTS. Telling them you are going to stick needles in their “meridians” to “unblock their “qi” in order to “alleviate their nausea” IS JUST PLAIN WRONG when you know that there is not ONE SINGLE TEENY WEENY BIT OF EVIDENCE ANYWHERE that meridians exist. And that although we can get the electric potential of cardiac and brain cells etc nobody has ever been able to find this amazing “qi” energy thingy that is so amazingly important that it needs unblocking all the time.
Oh and where are all the RCTs that show that sticking little needles in people will get rid of their nausea – where did you say they were? Oh, they don’t have any? Oh, right – but they’re just gonna stick those needles in people anyhow? Right. Great idea.
There is next to no evidence for any of this nonsense. My point is why not just do nice stuff like I have said before WITHOUT ALL THE HAND-WAVING PSEUDOSCIENTIFIC CRAP AND THE FALSE PROMISES. Do nice massages, soothing music, support groups, information, nice smelly candles, whatever – but leave out all the BS.
Where’s the problem with that?
Why are you two so insistent on carrying a flag for these charlatans?
mark,
“my point quite clearly is that keeping up with “real medicine”… that surely ought to be obvious – no?”
It should be obvious that other things than “keeping up to date with homeopathy…” take up peoples’ time. Everyone has the same amount of time. I hope you don’t think your time is more valuable than anyone else’s…
You said “Acupuncture has repeatedly been shown to cause infections, pneumothorax etc –“…and then you talk about deception. You seem pretty emphatic that deception is…bad.
The center Edzard links to focuses on auricular acupuncture. Show me “one single teeny weeny bit of evidence anywhere” of pheumothorax from auricular acupuncture…and I’ll believe you aren’t being a bit deceptive here.
“My point is why not just do nice stuff like I have said before…”
Why not? Go for it. I’m sure they’d love to have you volunteer at the center. I’m sure the patients would appreciate it too.
“Why are you two so insistent on carrying a flag for these charlatans?”
A better question would be – why do you suppose doctors are referring cancer patients to the center(s)? An even better question would be – why do you think you have a better understanding of the situation than the patients’ doctors?
@jm
“It should be obvious that other things than “keeping up to date with homeopathy…” take up peoples’ time. Everyone has the same amount of time. I hope you don’t think your time is more valuable than anyone else’s…”
real medicine time vs homeopathy time? it’s ought to be obvious there’s no contest – of course one is more valuable than the other!
reality vs quackery.
but once again you deliberately distort my meaning. There are constantly ongoing major advances in conventional medicine – just look at how things have progressed over the past 50 years. Homeopathy has made no significant advances in the past 200 years – it’s still the same old quackery. My point ought to have been pretty obvious – keeping up to date with homeopathy involves negligible effort whereas doing so with conventional medicine requires prodigious effort.
You could put “Major advances in Reiki in the last 50 years” on the back of a postage stamp with plenty of room to spare – and it’s the same for the rest of these made up pseudosciences.
“and then you talk about deception. You seem pretty emphatic that deception is…bad.”
ahem, well – yes, actually. Lying to patients is generally considered pretty bad form. It’s UNETHICAL. It’s often FRAUDULENT. It’s DECEPTION. Under what circumstances do you consider it is ok to lie to patients?
Real doctors operate to ethical standards and there would be very few situations in which it would be considered ok to LIE to a patient – but of course SCAM artists generally operate to a much lower standard of ethics (as apparently do you) and consider deception to be quite ok.
Your moral standards are obviously quite a bit lower than mine.
Auricular acupuncture is based on an even more ridiculous theory than its predecessor and there is no basis for it whatsoever. It is just as likely to cause infection, more likely to cause bleeding etc. The preposterous idea that parts of the ear correspond to parts of the body has never been even remotely correlated in any way so it is a deceptive practice.
Once again you are deliberately misinterpreting my words – do you have comprehension issues or do you delight in being deliberately obtuse?
“Why not? Go for it. I’m sure they’d love to have you volunteer at the center. I’m sure the patients would appreciate it too. ”
yet again your deliberate obtuseness is to the fore. the point, as you well should know, is that these SCAM artists could provide soothing treatments without all the hand-waving claims to relieve symptoms – and THAT IS WHAT I EXPLAINED CLEARLY.
So why don’t you stop deliberately twisting my words into your own deliberately obtuse versions and read what is written? Your duplicity and attempts to try to be clever are rather pathetic and are failing at every level. You would do better to come up with an original argument than to twist someone else’s words – but I guess you don’t have any.
““Why are you two so insistent on carrying a flag for these charlatans?”
but you don’t answer the question do you? as above you don’t have any original thoughts. you seem to know precious little about the subject but just make snide little remarks imagining yourself to be a clever little fellow when in fact you have an empty deck.
In answer to your question (you either haven’t been reading my earlier responses or you have problems with memory retention) I have been researching and studying SCAM for over 40 years) I know a considerable amount about SCAM and nearly ALL of it is based on pure pseodoscience and DECEPTION. When it seems to work it is nearly due to the placebo effect.
You on the other hand seem to be a blind fan and defender of SCAM with little actual knowledge of it – I suggest you pay a visit to the Quackwatch website and educate yourself with a few hours of the appalling SCAMS perpetrated on the unwary by the unscrupulous. You might even learn a little of the art of critical thinking and have some of the smugness removed from your persona.
mark,
“but once again you deliberately distort my meaning”
Actually, you are distorting my meaning. People spend time on all kinds of things – family, friends, work, etc. Nobody’s time is more valuable than anyone else’s. Nobody has “free time”. Do you really think your time keeping up with real medicine is more important than my neighbor’s time spending time with his kids?
“Your moral standards are obviously quite a bit lower than mine.”
Obviously not. You’re trying to scare people with pneumothorax from auricular acupuncture. That’s unethical, fraudulent, and deceptive.
“So why don’t you stop deliberately twisting my words into your own deliberately obtuse versions and read what is written?”
Take your own advice. I said you can volunteer at the center. Play some music, spend time with the patients, help the staff clean. You don’t have to do reiki – the center needs help in all areas.
“You on the other hand seem to be a blind fan and defender of SCAM”
Nope. I’m assuming that if the treating doctor is referring a patient to the center(s), they have their reasons. I think they know their patients, and treatment plans, better than you do.
@jm
once again you are being deliberately obtuse – or are you really this dumb?
“Nobody’s time is more valuable than anyone else’s. Nobody has “free time””
I explained my meaning VERY clear in my last reply – go read it.
““Your moral standards are obviously quite a bit lower than mine.””
“Obviously not. You’re trying to scare people with pneumothorax from auricular acupuncture. That’s unethical, fraudulent, and deceptive.”
ditto
I never said this and you know it. Auricular acupuncture is even more humbug than the other kind
You are the one who said it was ok to LIE to patients
Don’t you ever get tired of twisting other people’s words – it’s a particular vile form of scummery.
“Take your own advice. I said you can volunteer at the center. Play some music, spend time with the patients, help the staff clean. You don’t have to do reiki – the center needs help in all areas.”
I already work a 100+ hour week – exactly when do you propose I might “volunteer? Much of the work I do already is unpaid – I do need to sleep occasionally, and my family appreciates seeing me from to time. I already most of my time with patients and their relatives or in the hospital in one function or another.
I don’t need advice from the likes of you on how to spend what little time I get away from the hospital, and you being so patronising and fatuous is particularly ridiculous. You seem to be egregiously uninformed on this subject yet you are so willing to make snarky and sarcastic comments that just exhibit further your ignorance.
You never bring anything original or illuminating to the subject – just snark and twisting of others comments. You seem unable to understand what has been said previously – I suggest you go back and read the previous comments before you comment further – it will save you further embarrassment.
btw auricular “acupuncture was a European invention of the 20th century. It is no real relation of the Chinese version and comes of the ludicrous belief that the auricle resembles a “homunculus”. It is pure pseudoscience although I don’t suppose that that will stop people such as yourself believing in it. There’s one born every minute as P T Barnum used to say.
@jm
“You on the other hand seem to be a blind fan and defender of SCAM”
Nope. I’m assuming that if the treating doctor is referring a patient to the center(s), they have their reasons. I think they know their patients, and treatment plans, better than you do.”
Not much of a critical thinker are you? Just expect everyone else to do it for you eh?
Well have a look at some of these if it’s not too much trouble for you – all you have to do is to click on the link – scientific information at your fingertips:
https://sciencebasedmedicine.org/more-evidence-that-acupuncture-doesnt-work-for-chronic-pain/
https://sciencebasedmedicine.org/do-acupuncture-points-exist-can-acupuncturists-find-them/
https://sciencebasedmedicine.org/australia-ends-insurance-subsidies-for-naturopathy-homeopathy-and-more/
https://sciencebasedmedicine.org/essential-oils-in-the-ambulance/
https://sciencebasedmedicine.org/reiki-fraudulent-misrepresentation-revisited/
https://sciencebasedmedicine.org/chiropractic-pediatrics-delayed-referral-misdiagnosis-adverse-events-and-ineffective-treatments/
https://sciencebasedmedicine.org/category/homeopathy/
sometimes one has to do a little reading and thinking for oneself and not take things on blind faith
one has to go to an authoritative source and not be so smug and dismissive and be so certain that the hand-waving and make-believe magic people know what they’re doing
SCAM artists are getting these clinics in NHS hospitals because they also provide some other useful services as well – so sometimes the powers that be put up with the downsides and sometimes they don’t realize what those downsides are. Not everyone is fully genned up on the negatives of SCAM.
I keep saying read the right hand bar of this web site – done that yet?
They use the NHS so that families of cancer patients and hospital visitors/outpatients etc see the SCAM clinic and think that these things must be ok if the NHS uses them – so maybe they’ll give it a try for their back pain or whatever. It gives them a legitimacy they don’t deserve.
Remember it’s nearly ALL pseudoscience.
It doesn’t help that people like you accept it all uncritically and give it all a pass.
They do it for free here – a loss leader – but they charge a lot in the community.
That’s how they make it all back – it’s like free advertising for them! People are so easily led!
But you believe whatever you want to believe – it’s funny how SCAM becomes like a religion to some people. They can’t bear to have it challenged – they want to BELIEVE it’s true no matter what.
Doesn’t matter what you believe – it’s still pseudoscience make-believe.
mark,
“I never said this and you know it.”
Of course you did:
“Acupuncture has repeatedly been shown to cause infections, pneumothorax etc – it may be rare but side-effects from a treatment with no known benefits is a very poor cost/benefit ratio.”
We’re talking about acupuncture at centers like the Ogden Center (and centers like it). They primarily do auricular acupuncture. Sometimes they’ll branch out to hands, forearms, and lower legs, too. But mostly ears. So why do you bring up pneumothorax – if not to be deceptive? Pneumothorax from a needle in the ear isn’t ‘rare’ – it’s impossible.
“I already work a 100+ hour week …”
And every volunteer has a similar story.
“btw auricular acupuncture…”
And yet, no threat of pneumothorax.
I doubt it. Most doctors in the UK work well beyond their contracted hours for no additional pay. It is very disruptive to marriage and family life in general, not to mention the effects on the doctor’s own health.
Julian,
Similarly, everyone else has things that take up all of their time. Not just doctors in the UK.
mark,
“And? The center(s) offer a nice relaxing experience – support for the stress of cancer treatment, for both patients and their caretakers. Volunteers provide these services for free, and patients are there only with their doctor’s referal.
Does evidence determine a patient’s treatment plan, or is it a tool amongst other tools to determine a patient’s treatment plan?”
Treatment should always be evidence based whenever possible. In the absence of evidence there should at least be a clear rationale for the treatment – i.e. that it is plausible, scientifically likely to be helpful or have some other evidentiary basis.
Using treatments based on magic, or “made-up” treatments do not meet these criteria.
I realize this may be difficult to understand for “believers in woo” like yourself, but making stuff up like the inventors of chiropractic or reiki does not make them likely to work, does not give them a basis in evidence and there is no plausible science behind them.
You may not feel there is anything wrong with making stuff up and then lying to patients that it will get rid of their cancer symptoms – but people with ethics and morals may take a different view.
“…but people with ethics and morals…”
People with ethics and morals would either trust that the treating physician is working in the best interest of their patient, or intervene. If you think the physicians are doing harm to their patients by referring them to the center(s), the moral and ethical thing to do would be to use the proper channels to fix the situation.
Have you done that? Or are you really not that concerned?
@jm
“and then you talk about deception. You seem pretty emphatic that deception is…bad.”
“…but people with ethics and morals…”
People with ethics and morals would either trust that the treating physician is working in the best interest of their patient, or intervene”
there you go again either being deliberately obtuse or trying to put a deliberate spin on what someone else has said – you obviously take a particular delight in trying to be deceptive.
Having ethics and morals of one’s own HAS GOT NOTHING WHATSOEVER TO DO WITH TAKING ON TRUST THE BEHAVIOUR OR INTENT OF ANYONE ELSE whosoever they may be. These are personal qualities. Trusting other people is an entirely different matter and would depend on other factors such as their qualifications, standing in the community, personal history and so on. It would also depend upon personal knowledge of the individual and so on – many many factors.
This twisted thinking and inverted value set is so typical of CAM aficionados – a quality you share with Angela. Perhaps if you could get your thinking straight you might be able to see through the quackery and the hand-waving that is SCAM.
As to making personal inquiries or intervening – how much time do you think a person has? You are already making ludicrous suggestions about me volunteering for CAM sessions. With full time sessions and the time I already do that is unpaid + committees + research + admin + meetings + travel + CPD etc etc I already do a 100 hour week so I don’t know where you imagine I would find time to volunteer for anything.
But even here you display your muddled thinking. If I DID have free time to donate it would make far more sense to donate my most valuable commodity – my medical skilled time – rather than volunteering to do massages or waving around scented candles or whatever which I should probably do rather badly. Cost/benefit ratio would dictate that it would be far more advantageous to donate something far more valuable and at which I am far more skilled – but in your muddled thinking you would have me doing some silly mindless SCAM therapy instead. Not clever.
But in any event you have already clearly demonstrated that you have no respect for ethics or morals as you believe that it is perfectly fine for these people to LIE to patients with no scruples WHATSOEVER.
Before you start twisting my words again as you always do – be clear – we are talking about what you have clearly stated here – THAT YOU HAVE NO PROBLEM WITH PATIENTS BEING DECEIVED.
I believe that this is wrong, unethical and immoral except in the most exceptional circumstances. But it is not my job to police this anywhere else but within my immediate purlieu.
I am getting a little tired of your vacuous and twisted comments and you never have anything original to bring to the topic. If all you can do is twist someone else’s words and make daft suggestions it might be better for all to say nothing at all.
mark,
You said,
“I believe that this is wrong, unethical and immoral except in the most exceptional circumstances. But it is not my job to police this anywhere else but within my immediate purlieu.”
and of course,
“As to making personal inquiries or intervening – how much time do you think a person has?”
In a previous post, Edzard claims that one of the points in the AMA Principles of Ethics is “A physician shall uphold the standards of professionalism, be honest in all professional interactions, and strive to report physicians deficient in character or competence, or engaging in fraud or deception, to appropriate entities.”
Edzard’s comment on that was “Treating patients with unproven therapies in the absence of fully informed consent is arguably unprofessional, dishonest and deceptive.”
Maybe Edzard is mistaken. Maybe it doesn’t apply in England. Maybe “strive” means the principles only apply if you have enough time. Maybe you could clear this up for me…but it certainly appears that you have time to complain about deception – but not enough time to report to appropriate entities.
Dr Julian -‘ and every volunteer has a similar story ‘ you say ‘ I doubt it.’ I have worked with volunteers who have worked their ‘normal job six days a week and volunteered for a few hours on their day off. Volunteering is very much like that : if you really are drawn to doing it you find away.
But the point is that its not about a competition of working hours ( we would all have a story : I recall in the 70’s and then 80’s first the miners’ strike and then the Falklands War, working with admirals, engineers etc through the night, having worked a full day, there was no choice) it is about the fact that mark thornton abhors these centres and instead of as jm suggests: he does’ something about it’, he continues to beat the drum of criticising those that have no influence, when as a doctor he may have.
Angela,
“the point is that its not about a competition of working hours…”
I always find it irritating when people think their time is more valuable than anyone else’s. But it seems that mark (and some others) are simply avoiding the main point – cancer patients at the Ogden Center are only there because of a doctor’s referral.
mark can go on an on and on about studies and evidence…but that’s not really relevant here. The relevant part is that doctors are recommending services (that mark finds “unethical, deceptive, and immoral”) at the center as part of their patients’ treatments.
mark is obligated to report the report those physicians “deficient in character or competence, or engaging in fraud or deception” to appropriate entities.
Dr Thornton,
I am afraid I am going to have to draw on my own experience here, which by its nature is anecdotal, with all the shortcomings that this has as evidence. While I was in practice for thirty years, you still have over a decade on me. Nevertheless, you will know that, while the body of evidence provides are framework, and it is essential to keep up-to-date with it, every day in clinical practice you are faced with decisions where the data you would like to base them on simply aren’t there, and you have to draw on your training, your experience and the expertise of your colleagues, and to listen to everybody else involved, whether it is the multidisciplinary team, the relatives or the patient themselves.
Cancer patients come with all levels of education, pre-conceived ideas and awkward relatives; about the only thing they have in common is a fear of what is going to happen to them. It was my practice to spend a lot of time explaining what was wrong with them, what the treatment involved and what it was expected to achieve. I would watch their reactions carefully to judge their understanding, fully aware that many people don’t know what a cancer cell is (or any kind of cell), most people have no understanding of percentages, and most patients’ expectations of how they will fare is rather different from their oncologist’s. Of course the specialist nurses and the availability of printed information was very helpful here. Receiving a diagnosis of cancer fundamentally alters the way we see the world, and it can take a long time to adjust (most of this happens after treatment is finished and the patient will perceive themself as being left to get on with it, without the support of the team looking after them). I have always found that being honest and straightforward works better than beating about the bush; there is no way of wrapping up bad news to take the sting out of it, and everything is easier if you are all talking about the same thing. Unfortunately not everybody uses the same language (for instance doctors trained overseas whose first language is not English will know medical terms but not the vernacular understood by patients); many times I have seen two doctors giving what they thought was the same explanation, which the patient came away confused at what they understood as two contradictory accounts.
Given all this, if the patient believes that various types of woo are going to help them, my position was that my main responsibility was to stop them doing anything that was going to harm them or compromise their management (weird diets are a common problem here). It was not to try to re-educate them in the scientific method or to cover major failings in their education. This is difficult to achieve in any case, and one of the aims of Professor Ernst’s blog (and perhaps my reason for posting here – I feel fundamentally disturbed when people hold false beliefs), but that was not the appropriate setting.
I posted a length explanation of the problems of managing chemotherapy-related nausea and vomiting a couple of days ago. I hope it made sense because I was quite groggy from 10mg of IV chlorphenamine and feeling unwell from the daratumumab infusion I was having at the time, but writing took my mind off how I was feeling (worse than usual, for some reason). The main point that I was trying to make is that success depends critically on the patient’s expectations, their beliefs and their trust in the team. You have to work with them, and you have to harness the placebo effect wherever you can. Chemotherapy-induced emesis is not like a cardiac arrythmia that responds in a predictable way to beta-blockers. Whilst I am aware that placebos still work even if you tell the patient that is what they are, believe me, everybody will have a much easier time if you nod and agree that something the patient has suggested might be worth trying than if you launch into a length explanation of why it can’t. And I admit that I am guilty of suggesting to some of my patients that they might want to try ginger biscuits or wearing Sea Bands (elasticated wrist bands with a plastic pebble pressing on an acupunture point supposedly connected with vomiting – I would be interested to hear Graham’s take on the medicolegal implications). At least having something that they can do themselves restores some of the sense of control which is completely lost when you become a cancer patient.
In any case I find it hard to believe that in over forty years of practice you have never (knowingly) utilised the therapeutic effect of placebo, unless I have misunderstood and you are a pathologist.
Thats a very interesting question Dr, ultimately I suppose it raises the issue of patient expectation and reliance on consequential advice. If the “advice” is something like
“look patient, chemo is going to make you feel very nauseous, the reason for that is the process is essentially damaging by nature and the body has primitive means of dealing with what it thinks is sickness and infection that involves temperature control, , diarrhoea and vomiting. Now dealing with those things is going to be tough on you – many people find comfort in wearing copper bands on the wrist, eating ginger biscuits, drinking mint tea or even other things like acupuncture etc – and if that helps you then thats all brilliant, be aware though ultimately its whats going on in your mind that is helping you and many people simply find a brisk walk and a plain diet is best, everything is hot snot as far as I’m concerned”.
over time and over the course of a busy practice this becomes:
“try a ginger biscuit or a minty tea, try acupuncture if you want, it helps some people”
this then becomes:
“try the happy hippy rub club on level 4”
which is still much more respectable than
“I’m sending you to the Fountains centre for a dose of homeopathic medicine”.
As I read somewhere in this increasingly long thread, if there is an issue with medicine, medicine should address it, it should not refer to magic (my paraphrasing).
In the examples given I could not take issue with the behavior demonstrated and I doubt any ftp panel would pay it the slightest attention, however, the presence of and system of referrals to a Alternative Centre is fertile ground for a future problem.
The gullible in our communities require protection, even from themselves, the sick are often gullible as a consequence of their increasing desperation with a rampant disease, we have a duty to protect them. I dont doubt the fountain centre and others of its ilk is staffed by responsible enough types however, the existence of this centre and others is problematic, for out there, in the big world there are filthy corrupt individuals who know the money to be made from quackery and they will utilise the credibility of this centre for their own purposes.
I’m afraid you cannot, in my view, have the one without the other and so we must try and stamp out the lot.
@Graham
Do you have an address for the Happy Hippy Rub Club? Asking for a friend.
@Julian
I prefer to call it the consequences of care based on good medical practice.
jm – yes I completely agree with your post. At the risk of causing once again mark Thornton’s (and some other sceptics’) ire, here is an update on my friend’s experience at the Fountain Centre at The Royal Surrey. She starts her high dose of chemotherapy in a few days’ time – she is likely to lose her hair immediately, so is considering ‘cold cap’ treatment(this is very distressing for her). She is in a state of acute anxiety and stress. She has already received acupuncture and counselling; in her words: ‘ the counsellor completely understood me, I could cry, I could talk about issues that I can’t with my family, I was heard and I was validated; it was invaluable’ .
If anyone describes this as an anecdote or accuses me of wanting, because I support these centres, of deception or wanting patients to be hurt, I suggest you read this experience with fresh eyes and put your usual crassness and accusations where they belong . The CAM centre is offering comfort through a heinous experience for patients who choose it under the direction of the medical professionals. I whole heartedly, for one, hope these centres endure.
Dr Julian: I recall your comment that maybe the protocols are different to when you worked there: maybe my friend’s experience clarifies that a little.
One point of information – high-dose chemotherapy refers to doses which completely destroy the bone marrow, which then needs to be replaced either by a transplant or by stem cells. The Royal Surrey doesn’t have the facilities to deliver this type of treatment and refers all patients to the Royal Marsden (this is the reason they referred me in the first place). Otherwise chemotherapy is given in standard doses calculated according to surface area and kidney function, with adjustments during the course depending on how the body is handling it. This has to be pretty exact – too much and the toxicity is enormously increased, too little and in doesn’t do anything.
Cold caps are uncomfortable, and they also cool the body, so that you feel very cold for the few hours they are in place. For chemotherapy which is cleared rapidly from the body (most but not all types) they are effective in preventing hair loss. Not all chemotherapy causes hair loss, but for those drugs that do it generally falls out completely 2 – 3 weeks after the first dose. It does grow back, however, and in my case it came back curly, which I loved (it has grown straight again now).
Counselling, of course, is something that is normally available on the NHS, though it is rather hard to access as mental health services are chronically underfunded. Although there is an NHS psychology service available to cancer patients in Guildford, this is very limited and they tend to see people with complex pre-existing issues (and only take referrals through the palliative care team). Unfortunately there is very little regulation of counsellors, and only a minimum amount of training required, so while some are excellent, others are truly terrible. This is not helped by the fact that most people have no idea what the difference is between a psychiatrist, a clinical psychologist, a counselling psychologist, a psychotherapist, a psychoanalist and a counsellor (or indeed between a radiographer, a radiologist and a radiotherapist).
I am afraid that as far as scientific evidence goes, your friend’s experience would still be anecdotal. In fact there is very little hard evidence available at all to say whether and to what extent counselling is effective, particularly in the long term, and for what problems, or other psychological interventions for that matter (the one exception being cognitive behavioural therapy). In the wider context of psychology, many important studies which have strongly influenced the whole development of psychology as a science are now being called into question because of flaws in their methodology and the lack of reproducibility in their results. But that is a different topic altogether.
Dr Julian – thank you for taking the time to elaborate on chemotherapy. Of course, I only know what I heard, one reason there was so much distress is the ‘cold cap’ treatment and the associated discomfort. Losing one’s hair can be traumatic for many people.
Whatever your view on counselling is , the point I tried to make is that my friend benefitted from off loading her fears and anxieties to the counsellor. As you say there are many disciplines within psychotherapy, but none that I am aware of that require minimal training. In the cash strapped NHS CBT appears to be the one offered; and that appears to be outsourced and often online. It’s not the same as having that proverbial shoulder to cry on, which is what cancer patients find beneficial.
Counselling has been denigrated by another poster: accusations of dodgy characters. Yet if patients need this service, surely it can only help the patient’s experience. Some people do question whether counselling is effective. My view is it definitely is when clients present with insurmountable problems (they think) and then clarity appears. End of life counselling charities are invaluable. We must never demean the art of truly listening.
In exemplifying my friend’s experience on this blog I had hoped it would be read in the context of CAM centres attached to hospitals. I am not a medical expert: the recurrent theme on this thread is one of berating CAM, and now indeed psychotherapy, when it seems the cogency lies in abhorrence by some posters of the centres existing; they spend time on this blog dismissing CAM when they need to contact the directors of these centres to proffer their concerns. jm and I have more than once suggested this.
I have great respect for all you contribute here : one of the reasons I originally engaged with this blog was to learn. You provide a lot of information, and sadly most other sceptics of CAM have reinforced my sense of there is no right way, but many, and the majority of people do their best in the trying and challenging circumstances of maintaining good health.
I consider acupuncture to be nothing more than psychotherapy with needles. However, the risk of something going wrong (needless needles) may be very small but it is real, and many claims are made for it which are not supported by evidence. It relies on magical thinking. It’s fraud is what it is. If your friend feels she benefitted from it that does not justify it. There are honest ways of offering compassionate support.
Counselling as a profession is wide open to dodgy characters. Anyone can set up shop as a counsellor. That said, a caring and honest person can be a great help in time of trouble. It’s a terrible fact that mental health is only now getting the attention that it should.
I think “under the direction” is not an appropriate description. “With the agreement” would be more apt.
Who accused you of wanting to hurt patients, by the way? That would be a crass accusation if not true.
Leigh,
“It’s fraud is what it is.”
If that’s true, the referring physicians should be reported to appropriate entities. Is that happening?
Leigh Jackson – you consider acupuncture to be nothing more than psychotherapy with needles. Well, it seems the goalposts are forever changing. I wonder what psychotherapists think about using needles?
If as you purport fraud is happening, it does need dealing with : but that has been the theme of this thread: numerous accusations aimed at those commenters who have no power to help.
If my friend benefitted from it, she certainly does not have to justify anything: to me or to you; she has enough going on I would imagine without giving any detrimental or otherwise thought towards therapies that are helping.
So the counselling profession are open to dodgy characters.? It’s my ball park area, and I haven’t encountered anyone ‘dodgy’ . I have seen it’s a vocation and there are varying roles and skills within. One could say the same of most disciplines.
Respectfully, it’s a play on words regarding : under direction or with agreement. Whatever suits you. However, we are talking about CAM centres attached to cancer units. I think it’s unlikely the medical professional team are in the dark about their patient’s use (if desired)of CAM.
You and others speak of these Centres as if they are the worst scenario for patients. You can contact those accountable/ managing the service. Don’t target the patients or the therapists, go to the top, have your say. Meanwhile, I for one am a little comforted that my friend and other patients are offered a support network alongside their medical treatment.
@angela
Doesn’t matter how many times you tell the story, how loudly you tell it, how sad it is, how many or which words you use or how many times I “read this experience with fresh eyes,” it’s still an anecdote, Angela.
Start by accepting some of the basic rules of the game and you might not get as much pushback.
(Okay, trolls, time to to get all crazy-eyed and offended because I called it a game and I don’t take it seriously or some such nonsense. To do this is to use your time-honoured tactic of distraction. Ready? Set. Go!)
So Angela, if you or your friends believe you may be helped in any way whatsoever by acupuncture, homeopathy, balancing an egg on your head whilst standing on one leg reciting the Lords Prayer backwards, etc, feel free to do so. Feel free to believe and do whatever you like as long as it doesn’t physically harm you or prevent you from following doctors’ orders. Placebo, do you see? Chemo plus placebo and the greatest of these is… ?
Studies claiming that honest placebos “work” are dishonest. Trial subjects are primed beforehand to believe placebos work. You only have to befuddle a few natural doubters’ minds to skew your results.
I’m a bit puzzled here. Are you saying that placebos work by some other mechanism that what is usually referred to as the placebo effect?
Or are you saying that the studies showing that there is still a placebo effect even when the patient knows that they are not receiving an active treatment are dishonest? If so, could you provide an example of such a dishonest study to support your contention?
I guess Leigh is referring to the work of Ted Kaptchuck, who did some experiments with the intention of demonstrating that the placebo effect could provide benefit even if the subjects knew they were receiving an inert substance.
It turns out that the design of these experiments was fundamentally flawed. The first problem was that the subjects were recruited via advertising in which the purpose was revealed. This introduced a bias of selecting “willing” individuals. Secondly, the participants were “primed” by telling them that research indicated that an inert placebo drug would help. Thus they were led to believe that even if the “drug” was said to be ineffective/inert, it could help them.
I am recalling this from memory before turning off the light, so I might not be presenting the details in fully accurate detail. But this is the gist of the problems with Kaptchuck’s experiment. The priming was so effective that some subjects asked to continue to use the placebo as they thought it helped with their problem, which was long standing pain if my recollection serves me right.
I do not think the term “dishonest” applies here as I believe Mr. Kaptchuk did not deliberately fix the game. Rather one may apply Hanlon’s razor, which states that one should…
“Never attribute to malice that which can be adequately explained by stupidity”
Your reply had not gone up when I made my reply but glad to see you up to date on this whole power of the placebo trope. As I say in my reply I was speaking somewhat rhetorically, even provocatively, so not unhappy to have generated a response. Kaptchuk has a somewhat exotic CV and strikes me as being a man with a mission. He’s definitely not stupid.
@Leigh
As you realise, I did not say he was stupid and I would not use that word to describe Mr. Kaptchuk’s qualities. But it is the word used in Hanlon’s razor, which applies well to the case.
Anyway, as can be read on Wikipedia, Mr. Kaptchuk is basically educated in oriental medical archeology and has worked as an acupuncturist. He has made a name of himself as a scientist and researcher in placebo studies. He has done some very interesting work along with Dr. Hróbjartsson and others in this field. I consider the “open placebo” studies to be Mr. Kaptchuk’s low water, so to speak.
It is worth noting that Dr. Hróbjartsson did very important work on placebo with Dr. Peter Gøtsche, which concluded that placebos have surprisingly little effect. More relevant references can be found in the wikipedia pages I link to above.
To describe Kaptchuk’s published studies as experimental or innovative in their methodology would be one way of putting it. Less generously one might ask whether he is unconsciously or consciously biased.
I first heard of Peter Gøtzsche through his placebo study. Kaptchuk would never make such a hugely naive blunder as agreeing to speak at an antivax shindig. Public relations is one of his fortes.
Both of them have passed across Orac’s radar.
Oh yes, I might add that I attempted to read Kaptchuk’s “The Web That Has No Weaver”.
Dreadful, though Angela might like it.
A brief demonstration of how profoundly flawed Kaptchuk’s method is.
How to present an “honest placebo”?
1. This is a placebo. It is proven to be very powerful. You don’t have to believe it for it to work.
2. This is a placebo. It is an inert pill made of nothing but sugar.
Would you get the same result using the two different descriptions?
Which is the more honest description?
“Honest placebos” work is a meme deriving from a few studies by Ted Kaptchuk in the USA. The claim got a lot of publicitiy after his first study where he claimed to have shown that the placebo effect is found even when people know that is what they are taking. Dishonest is a strong word here, I chose the phrase partly on rhetorical grounds. Exactly what Kaptchuk’s intentions are I can’t know. However, I am suspicious.
The studies in question are very questionable in their method. As I say, the study participants were groomed beforehand by being told that placebos have been proved to be very powerful and will work even if you don’t believe it. There’s a whole lot of overt suggestion going on. Recruitment was also highly suggestive in form.
Perhaps I can link you to another medical blogger of a sceptical frame of mind who has called out Kaptchuk on his claims. Respectful Insolence is the blog of Orac – his real identity is not too hard to find onsite.
https://respectfulinsolence.com/2016/12/20/does-thinking-make-it-so-the-placebo-myth-rears-its-ugly-head-again/
Leigh,
Thank-you for answering my query. I was not aware of the specifics of Kaptchuk’s work, nor of his methodological shortcomings. I will take what you say about him in good faith and I stand corrected.
It seemed very plausible to me that the placebo effect would still hold even when the subjects are informed that this is what they were getting, particularly as people are so irrational in their beliefs and how they come to hold them. However, without data the question remains unsettled. It is not even clear to me how one would design a trial to test it. I don’t think it would be a remarkable result to find that some placebos are stronger than others, or that this is affected by priming.
I am not aware of anyone else attempting to square this particular circle than Kaptchuk, although others have been involved in his open label placebo trials. It’s astonishing how quickly the meme has spread. The media do so love this kind of story.
Apologies my award was presented at The Royal medical institute .
Where is this “Royal medical institute”? A google search reveals ones in Pakistan, Turkey and the UAE.
It was actually The Royal society of medicine which I believe is Wimpole street London , had to do a bit of googling myself .