Leading journalist Polly Toynbee was the winner of the 1998 HealthWatch Award for her outstanding contributions in informing the public throughout her career. Ms Toynbee was unable to accept the award in person at this year's Annual General Meeting, but she prepared for us the following report of her views on issues that concern HealthWatch, ranging from health screening to bogus diagnostic techniques.
Questions were put to Ms Toynbee on HealthWatch's behalf by Chairman Professor John Garrow. He began by asking whether she believed that screening programmes involving apparently healthy people do more good than harm? She replied, "As a member of the National Screening Committee, we are bombarded with requests for national screening programmes for a huge variety of ailments, some of them utterly esoteric and rare".
There are currently several hundred haphazard screening programmes in operation, done differently or not at all in different areas, many of them of deeply dubious quality or purpose, many quite expensive. It is plainly going to take time and a lot of persuasion from the centre to get people to stop doing what they have done for a long time, where there are no clear beneficial outcomes. It is much harder to stop existing screening schemes than it is to start new ones.
We started out two years ago and have now drawn up a protocol with which to judge any proposed - or existing - screening programme.
The key principles are that the screening should be for a relatively common disease, that the process should be easy to carry out, will gain public support, a high quality should be maintainable, and that there should be a clear remedy with a definite health gain if disease is detected. The test should provide an acceptable level of false positives and negatives, and people should understand that there will always be some false positives and negatives. Every programme should have a strict quality assurance and effectiveness evaluation built into it. Cost is one element in the consideration, but it is by no means the overriding one. One of the first requests we dealt with was for prostate cancer screening. A huge head of medical pressure had built up for this procedure amongst urologists. There was also quite a strong political pressure from the small but vocal nascent men's movement who felt men should have the same access to screening as women did for breast and cervical cancer. This was the first real test of our resolve to stick by the principles we had drawn up, for prostate screening failed on several counts. The most important of these was that it was still unclear whether if prostate cancer is detected, surgical intervention makes any difference to the outcome. Prostate cancer is found in a high number of older men who will outlive their disease, and surgery can damage their quality of life without offering a clear health gain.
On the other hand, we have decided to go ahead with pilot schemes to test out the effectiveness of screening for bowel cancer. Catching it early has very clear health gains in saving lives, but the pilot will show what level of compliance it gains from the public who have to take part in a test many of the squeamish may find unacceptable. In my view, the work of the committee is very thorough, properly analytical, and well aware that the anxiety which can be caused in screening programmes - and the money wasted - can end up causing the individual and the NHS more harm than good. There is a strong push for screening for every disorder, so we regard it as most important to try to educate the medical profession and the public on the principles of screening. Our work is as public as possible and all papers are available on our own web site on the Internet.
Unvalidated methods of healthcare in conventional/alternative medicine. Is this a great evil to be rooted out? If so, how? Or should we apply caveat emptor?
Personally, I am appalled at the galloping growth in belief in 'alternative' health. Alternative only means anything which hasn't been properly subjected to clinical trials. Prince Charles keeps trying to bring together orthodox and unorthodox methods. Newspapers that thirty years ago would have had no truck with this now peddle it daily on their health pages - especially the Daily Mail - alongside articles on real health care. It is strange and alarming to me that just as more people are being educated for longer, many more doing sciences at least until the age of 16, the world seems eager to abandon basic scientific methods in favour of alchemical mumbo jumbo.
As a first step, there should be a strict edict within the NHS that no unvalidated method should ever be part of the health service. (This might not include osteopathy: for all its weird underlying beliefs, there is good evidence of its efficacy, but only in the first six weeks of back pain - not for chronic long - term conditions.) If the NHS, from the department, took a firm and public stand on this, we would at least start the debate. The Department for Education should take the same view where it is creeping into university courses - usually new universities - often with sponsorship from the makers of herbal and homoeopathic remedies.
I don't think 'caveat emptor' is enough here, when so many newspapers and magazines tell people unscientific stories about miracle cures. Perhaps all remedies, and peddlers of them, should have to tell patients clearly that their quackery has not been tested scientifically. After all, some agents such as ginseng (though goodness knows why only one or two) are specifically banned under Advertising Standards rules from claiming any health - giving properties whatever. Alas, people still take it!
When a procedure is shown to be completely bogus (e.g. iridology or applied kinesiology as a method of diagnosis) this hardly affects the popular demand for it. Why is this so? Does it matter?
Why do people cling to bogus procedures? Because they want to believe in magic and miracles. And many hate and fear doctors for phobic reasons. Some people who are well want to think themselves ill, or that they are suffering from interesting allergies, to shore up their view of themselves as more interesting people. Or simply because they are emotionally in need of feeling someone is caring for them. The one bit of good the alternative practitioners may do is to take troublesome patients off the hands of hard - pressed doctors. But obviously that has risks, since some of these patients may be ill with real diseases not at first detected.
Is there inevitably a conflict between a scientific approach to medicine and a loss of the holistic approach? Does it matter?
I don't think there's any reason for the holistic idea to be exclusive to alternative practice. We all know doctors who are good scientists and horrible to patients, and vice versa. Increasingly patients won't tolerate rude and unkind doctors, and tend to walk with their feet, if they can. Amongst younger doctors these days I'm much encouraged to hear them talk a great deal about the good they can do by treating people well, listening to them and treating them as a whole person, not as a body-part.
Clearly medical schools have become far more aware of this aspect of treatment. Also, increasing use of counsellors within GP practices can do much to help.
Will evidence - based medicine destroy the efficacy of placebo treatment in situations (e.g. multiple sclerosis) in which a good placebo is the best treatment on offer?
Evidence-based medicine is the only way forward and the government's new National Institute for Clinical Effectiveness ought to do much to weed out treatments that don't work and encourage those that do. It ought, in the end, to give people more, not less, confidence in their doctors.
The placebo effect is very powerful, and good doctors know how to use it to suit each of their patients. Some patients are scientifically minded, others just want to trust their doctor blindly. Oddly, in my experience, this has nothing to do with intelligence or education, but is an attitude of mind people adopt when faced with serious illness. Some rush out to read every book, others prefer trust and hope, or simply mentally avoid it altogether. But once we elevate the placebo effect above science, all is lost.
The GM Furore: Who's the Blame?
Dr Bernard Dixon, science writer and former editor of New Scientist magazine, is the winner of this year's HealthWatch award for his many years of work in providing high quality information on scientific issues. After receiving his award at the HealthWatch Annual General Meeting in October, Dr Dixon gave HealthWatch members an illuminating and most enjoyable talk on what is possibly the most discussed yet least understood issue currently in the news.
It would be oversimplifying matters to blame the furore surrounding genetically modified foods entirely on the media. But they, along with many others, have played their part. Genetic modification is not new. The techniques were being developed twenty-five years ago when scientists voiced their concerns about possible dangers at a meeting at Pacific Grove, California. These were famously reported on in the American magazine Rolling Stone in an article entitled "Pandora's Box".
But the hysteria we have seen recently is a uniquely British phenomenon. And it was not until 10 August, 1998 that it was essentially triggered by a World in Action television programme. This described experiments in which Arpad Pusztai of the Rowett Research Institute, Aberdeen, had apparently demonstrated that mice developed stunted growth and an impaired immune response as a result of eating genetically altered raw potatoes. It seemed that Pusztai had inserted into the potatoes a gene coding for a lectin (a type of protein produced by many plants as natural insecticides). Amplified by banner headlines in newspapers and through television newscasts worldwide, World in Action's theme was the horror of "Frankenstein food".
There were, however, immediate grounds for caution over the practical significance of the Aberdeen work. Firstly, the results on potatoes were preliminary and unpublished. Secondly, even if the very worst interpretation were placed on this research, it scarcely justified the condemning of all GM food. However, the media claque which both preceded and followed the TV programme was not cautious. The Express ran a front-page splash, "Genetic crops stunt growth", accompanied by an editorial on Frankenstein food ("The latest revelations... raise the prospect that scientists might be creating something truly dreadful"). The Daily Mail's front-page story announced that the discovery undermined repeated assurances from manufacturers and governments that such foods posed no risks.
The furore quickly ended in farce. Barely three days after World in Action released its bombshell, Rowett Director Philip James announced that the experiments had not been done using genetic methodology at all, but by spiking potatoes with a lectin. Arpad Pusztai had been suspended.
The Daily Mail, to its credit, gave the same prominence to a front-page announcement that "Food scientist got it wrong" as to the original story. Other papers performed less creditably.
One clear lesson, at this stage, was that, just as scientists should not release data to the media until they have withstood appropriate critical scrutiny, so journalists need to question whether and where research claims have been published. While the refereeing process cannot guarantee absolute veracity, it undoubtedly helps to minimise error in the professional domain and needless alarm in the wider public forum.
Secondly, people commenting on genetic manipulation need to recognise that adverse effects coming to light during screening tests confirm, rather than repudiate, the effectiveness of those procedures.
With rare exceptions, this was not an impressive episode in the media coverage of science.
But then, six months later, it all erupted again. "Frankenstein food fiasco", "Shops in fear over GM food" and "Safety fears at 70 sites testing GM crops" were typical headlines on 12 February 1999. The trigger was a Guardian report that 20 scientists had supported Arpad Pusztai in stating that mice suffered adverse effects when fed on raw potatoes containing a lectin gene. Unfortunately, neither The Guardian article nor a press conference later in the day revealed precisely what Pusztai had done. Speakers said they had written a report, but it was unavailable. And-six months after the original claim-the work remained unpublished.
Such niceties did not deter the many reporters (not science correspondents) who went into overdrive in the ensuing days. "Scientists back findings of ousted expert" announced The Daily Telegraph. "Scientists are vying to produce the ultimate in Frankenstein foods-plants and animals with human genes", added The Express two days later Then The Guardian published a list of "GM foods to avoid like the plague", with names of companies, brands and products.
Absent from all of this was any recognition that the term "GM food" had three very different meanings. Not one writer, over several days, explained that a cheese, sugar or oil made by a recombinant organism differs considerably from a product such as tomato puree containing denatured DNA, and in turn from a plant containing viable genes.
Virtually no attention was given to the laborious vetting procedures of the Advisory Committee on Novel Foods and Processes. Also ignored were the committee chairman's public request for the potato/lectin results, her criticism of the way information had been released directly to the press, the Rowett Institute's rejection of the new claims as misleading and its call for open publication of the findings.
Instead of addressing reality, most otherwise serious programmes and publications took the simpler course of accelerating the bandwagon. The Sunday Times announced that "GM food is already widely available. Now scientists warn it could be a health risk"-suggesting that tomato puree or vegetarian cheese could be as dangerous to eat as raw, poisoned potatoes.
Such antics perplexed many scientists outside the UK (and many inside). Yet there were wider messages. One was the danger that national hysteria could not only jeopardise an entire industry in one country but create tidal waves elsewhere and indeed threaten international trade.
It is tempting to blame the media solely for Britain's GM food furore of 1998-9: there is much incriminating evidence. Yet others played significant roles, sometimes unwittingly. The furore was ignited not by a journalist but by a scientist, Arpad Pusztai. It was then supercharged by the group of 20 scientists in February 1999 whose protest, it later emerged, had been co-ordinated by Friends of the Earth.
Consider too the British Medical Association's report on The impact of Genetic Modification on Agriculture, Food and Health, issued in May 1999, and the ensuing media coverage-"Doctors on alert for GM diseases" (The Times) and "Doctors sound alarm on GM food" (The Independent).
But what did the BMA report actually say? One of its key conclusions was that "transgenic products may adversely affect people suffering from allergies. Soyabean containing genetic material from Brazil nuts cause reactions in individuals allergic to nuts". In fact, the single reference which the BMA used to back its claims was to a paper showing that an allergen from a food already known to be allergenic could be transferred into another food by genetic engineering. In other words, a screening test on a well recognised allergen, carried out specifically to exclude hazards of this sort, has been transformed in the public mind into the threat of unforeseen allergies lurking in our food. Neither the BMA report, nor any of the reports on the report, pointed out that one of the most valuable potential applications of genetic modification to food is to remove possible allergens by deleting the appropriate genes.
A quite different but nevertheless significant factor was the growing realisation that, with the increasing commercialisation of Britain's university science departments and publicly funded research institutes in recent years, it was now very difficult to find truly independent expertise for the evaluation of contentious issues such as the alleged risks associated with genetic modification.
Campaigning groups such as Greenpeace, Friends of the Earth and the Soil Association clearly played major roles too. (They might have been told that one of the principal motives for genetically modifying crop plants was to give them inbuilt resistance to attack by pests. This is far preferable to using chemical insecticides, and indeed is the very style of "biological control" which Rachel Carson advocated in Silent Spring in 1963.) So (inadvertently) did certain scientists who went over the top in dismissing public concerns as simply irrational.
Another significant voice was that of Prince Charles, who on several occasions spoke out against GM foods. A final, powerful influence was a circulation war between Britain's national newspapers, which no doubt helped to increase the temperature of sensationalism which characterised much of the media coverage.
The most regrettable feature of the UK furore over GM foods has been the pervasive insinuation that science in general is not positive but negative. Of course, the development of genetic modification, like every other discipline, will probably be accompanied by some risks-though none have come to light since the advent of recombinant DNA over a quarter of a century ago-and mistakes will be made. But given the practical fruits of scientific research in healthcare, agriculture, environmental protection and other fields, the idea that science simply creates problems which it cannot contain is absurd.
Some material adapted from: Dixon, B. What are science journalists for? Information Services & Use 1999; 19: 75-81.
The journalist and broadcaster John Diamond was the unanimous choice for this year's HealthWatch award. Diamond wrote the acclaimed book "C: Because Cowards Get Cancer Too", which records his experiences since developing cancer of the tongue. He was present to receive the award at the HealthWatch Annual General Meeting on 24th October this year and HealthWatch Committee member Geoff Watts read out John Diamond's presentation to a packed audience. This is reproduced below in full.
The other week I wrote a piece in one of the papers I write for, about alternative medicine. If any of you have read more than four newspaper pieces with my name attached to them then the chances are that one of them was about the intellectual folly which is alternative medicine. I must have written that piece a hundred times now in various forms and the routine has become pretty standard: the true nature of scientific endeavour, the infallibility of the properly designed controlled experiment, the futility of purely anecdotal evidence-well, you all know how it goes.
This time among the outraged correspondence that these pieces invariably attract was a letter from a man in Liverpool. He'd read my piece and it had upset him. For he was a practitioner in alternative medicine and knew it worked. And what's more, he said, he also knew that orthodox medicine simply didn't work. He didn't say it didn't work as well as doctors thought it did, or as well as patients were suckered into believing it would by the grasping medical establishment. No: he was quite certain. Orthodox medicine is a complete sham. It just doesn't work.
He'd included an e-mail address on the letter and-what can I tell you? I was in front of my computer screen, I was bored with whatever it was I was writing-probably yet another piece on the intellectual folly that is alternative medicine-and I e-mailed him. Getting into e-mail arguments about alternative medicine on the internet is as foolish a waste of time as-well, getting into arguments on the internet about gun control or who killed JFK or any of the other cul de sacs up which internet users regularly disappear. But nonetheless I wrote the message and, fool that I am, pressed the 'send' button.
"If orthodox medicine doesn't work," I wrote, "how come life expectancy since, say, the turn of the century has almost doubled?" In fact I wasn't quite sure of the precise figure, but if my previous arguments with alternative medicine supporters are anything to go by, nor was he. He wrote back what they always write back: the reason life expectancy has increased is because infant mortality has decreased. Take out of the equation all those babies dying before they get to their first birthday, and your average Victorian, with his homoeopathy and naturopathy and Little Liver Pills and Tiger Balm, lived just as long as your 21st century pill-popper.
Up to a point he's right, of course. One of the reasons infant mortality has decreased is because of orthodox medicine. But that's not what I wrote to him. Instead I wrote something like this: yes, infant mortality is down. But life expectancy at 20 is up too. And at 30, 40, 50 and 90. A 50-year old with access to a reasonably sober GP and a branch of Boots has a greater chance of living to 80 or 90 than his father or grandfather did. And these aren't statistics worked out by evil doctors with their axes to grind, but by actuaries who work for life insurance companies and who have to get the figures right or the insurance companies will go bust.
I'll give the man his due. He was, by his lights at least, honest with me, for his next message said "Oh. I didn't know that. Look, let me get back to you." Yes, I thought. A result! For the first time in years of arguing the toss with these people, I've made a conversion.
His next message arrived the next day. He was grudging. He didn't know where I'd got my figures from, but he supposed I must be right. Nonetheless, he was sticking by his original statement: orthodox medicine doesn't work and alternative medicine does.
I, he said, was a case in point. I had cancer. The doctors had tried to cure me and had failed. On the other hand his mother had been diagnosed with cancer a couple of years earlier. She, like me, had been a scoffer, a cynic, an unbeliever and had put her faith in the wretched medical con-artists. But after a while he had persuaded her to take Essiac.
Essiac, some of you will know, is an ancient herbal remedy used by Native Americans in Canada to cure cancer, and was rediscovered by a Canadian nurse some time in the 30s. There's no evidence that cancerous Native Americans lived longer in Canada than anywhere else, but Canadian alternativists rather like having their very own national alternative remedy, and the stuff is now touted all over the place as a miracle cure. I don't have to tell you that it isn't, of course; or that every properly controlled study of Essiac has shown that patients might as well drink Tizer for all the good it does.
But this man had fed his mother Essiac and she had-well, since you ask, she'd died ten months later. And this proved Essiac worked? Yes, he said. Because the doctors had only given his mother two months to live. Now as it happens this is one of the things that alternativists are always telling me about in their success stories: "The doctors said the patient would be dead in two months, or a year or two years," they say, "but he took-insert name of alternative remedy-and lived twice as long". In fact doctors very rarely give a precise sell-by date for cancer. Until the very end is nigh, they can usually only ever give a ball park figure. But when doctors say "I'm sorry, we can't be precise. It might be a year, it might be as soon as a couple of months", what people hear, understandably enough, is "You'll be dead in two months." Believe me, I know. Before I had my last bout of chemotherapy I was forever telling people I had three months to live, because that was the worst-case scenario. That was over a year ago, and here I am talking to you tonight. Well, not talking to you exactly, but you know what I mean.
Anyway, the reason his mother had died wasn't because Essiac didn't work but because she'd taken it the wrong way. She had swigged it and she should have sipped it.
I know: the man sounds mad. But I promise you, I've had this conversation, or one like it, with dozens of people like him who make their livings passing on information like this to anyone who pays them: from people with vague symptoms their GPs have got bored trying to treat, to terminal cancer patients desperate for something, anything, to give them some hope.
And the thing about these people is they tell lies. They may not think they're telling lies, but that's what it comes down to. Those of us who doubt the efficacy of alternative medicine tend not to point this out; after all alternative practitioners are usually kind and gentle people who like to think they have their patients' best interests at heart. Saying a homoeopath tells lies is rather like saying that the tooth fairy sniffs glue. But they do. I keep on getting messages, for instance, from men and women who want me to try one or other of their cures, and who tell me a story which goes like this: "I had a patient/friend/client who had been given two months to live and sent home to die because the doctors said there was nothing they could do about the tumour on her liver/lung/brain. Together, though, we worked out a regime of coffee enemas/organic grape juice/zinc-and-aspirin (and I promise you, all of those cures come straight from my e-mail in-box) and what do you know? The next scan showed the tumour had shrunk by half." Which does, indeed, sound miraculous. But then you say to yourself, hang on: what are the doctors doing scanning the patient if she's been sent home to die? Even the best-equipped hospitals tend not to give expensive scans to patients whose time is up. And so after a bit of gentle prodding it turns out that actually the patient has been sent home, but comes in every day for some radiotherapy. Or is on chemotherapy. And, OK, the doctors didn't actually say that the patient was terminal, but ...
If orthodox doctors tried to get away with that sort of nonsense they'd be kicked out of the business in five minutes flat. But the alternativists do it all the time.
But then it occurred to me. Although my Liverpool correspondent was a resolute and unabashed alternativist and I'm a steely-hearted and over-rational supporter of the orthodoxy, we do share a single belief which is this: we both agree that it's possible, under certain circumstances, to alter the outcome of some illnesses by introducing some sort of specific preparation into the sufferer's system.
That basic agreement established, there are two differences between us. I think that the best way of determining what works and what doesn't is to try it out under controlled conditions. If you give Essiac to 100 patients with the same sort of cancer and they die as quickly as 100 patients not fed Essiac, then you can be pretty certain that Essiac doesn't work. Simple. But he doesn't believe that. His is an act of faith-a faith based on rumour, speculation, misheard anecdotage and all the rest of it.
The other difference is probably more telling. If you were to ask most alternativists they'd probably tell you that one of the big differences between their art and our science is that the medical establishment is so very sure of itself. It's closed minded. It knows it's right. But in fact that's the very opposite of the truth. Although we patients demand certainty of our doctors because we prefer certainty in our lives, medical science is as much about not knowing as it is about knowing. An experiment, by definition, is about what you don't know, about what you want to find out. It's the alternativists who are so certain of their beliefs that so many of them don't think it's necessary to submit them to proper scrutiny. Not that they dismiss experiment out of hand. Look through the alternativist's web sites and they have one thing in common: the slightest hint of experimental success is enough to support a vast body of alternative belief; the slightest hint of experimental failure is enough to demolish an equally vast body of established orthodox belief. To be more specific: I've been told scores of times that the Thalidomide case demonstrates how much nonsense orthodox medicine is (and it's interesting that 30 years after the discovery of Thalidomide's dangers, the alternativists still use it as their prime example of orthodox failure). Because Thalidomide was bad medicine it follows that all orthodox medicine is bad. You then go on to challenge them about homoeopathy and they'll tell you that the meta-research published by the EU last year showed that there are statistically significant results showing that homoeopathy has a benefit for hay fever sufferers and people with sore limbs. And on that tiny shred of evidence they start telling me about the wonders homeopathy can work in cases of cancer and heart disease.
It's nonsense. And much of it is offensive and dangerous nonsense too. And for as long as I can, and as long as I can sweet-talk indulgent editors, I hope I'll get the chance to say so again and again.
All of which is an unforgivably long way round of telling you how very honoured I am by this award, above any of them. Yes, I was grateful and usually pretty surprised to win prizes for my journalism and for the book. But to be told that I've done something to help people-too confused by the welter of nonsense about medicine they read in the papers to approach their illnesses rationally-to help them think twice about the claims made for the untested and the impossible...well as far as I'm concerned, that's something worth doing. Thank you.
John Diamond died on March 2nd 2001
Claire Rayner, who honored us by accepting the 2001 HealthWatch Award at the 1st November AGM, has picked up a few ideas in some fifty plus years of working in and around the NHS. It occurs to her that a question rarely asked is 'What are patients for?' In her presentation she entertained those present with her own answers to this question.
From whose point of view are we to look for the answer? That of the patient? Or that of the doctor? Or, since we have a highly politicised NHS, that of the politician? Clearly, it will have to be from all three. And I shall begin with that of the patient.
The most pressing is of course:
Curing: Above all else we seek relief from our symptoms and the banishment of fear of future symptoms. There are some unfortunate people, however, who have a desperate need for the attention of doctors and who are happiest when they have a few (preferably not too disagreeable) symptoms of sufficient medical interest to keep doctors hovering at their sides. These are the ones who want most of all:
Looking after while being cured: Regression into a state of juvenile dependency is a common part of being ill, be it physically or mentally. So, we need to have someone who makes us feel safe and cared for well within reach all through the illness stage and afterwards too if we can get it. Meeting your doctor in the supermarket and having him say, "And how's the old trouble then?" makes you feel important and valued, unless of course the old trouble is something mildly embarrassing like an addiction to masturbating while wearing scarlet panties.
One reason for wanting the doctor there during illness is to be:
Listened to at a time of stress: human beings have a deep need to talk about it, to anyone and indeed everyone who will listen, as anyone who has ever worked in an A & E department knows well. But it is not only after trauma that this need exists. Those who live in constant pain or discomfort need others to know how much they suffer. They may in consequence be shunned by their nearest and dearest, which means that finding someone else to listen to necessary outpourings of distress becomes very important indeed.
A caveat must be entered for some patients: the inarticulate, those who are overawed by doctors and those who simply don't have the language with which to express their needs for a listener. They are the patients who reckon their medical attendants are for:
Being psychic: some patients don't give you vital information about themselves and their condition, but instead look at you trustingly, sure that you will understand anyway and know exactly what they mean when they respond to your question about their pain by telling you it started in the middle of Mary's wedding reception.
And as if listening to patients wasn't enough for a busy practitioner, patients also believe that they are for:
Explaining to: how some clinicians must yearn for those fabled days when a doctor could pat a patient's shoulder or head and say; "Don't you worry your head about any of this, we're here to do the worrying and the thinking, you're here to hrrmph...get better." Well, those days are indeed long gone and not a moment too soon from a patient's point of view. We want to know, in every detail, what our symptoms mean, what signs you have observed in examining us and what they mean, what the latest treatment is for our condition, its safety rate, its failure rate and all other available evidence for its efficacy. And even those of us who are totally unable to comprehend such things as risk /benefit ratios (after all many of us buy a lottery ticket at fourteen million to one odds every week) we still want to be told. And told over and over again in order to take it in properly.
For being encouraged: being ill and getting over it does take a certain amount of patient as well as medical effort. They want - indeed, need - their doctors and other attendants to tell them at frequent intervals how well they are doing, how brave they are being, how hard they are trying, how patient and sensible they are, with always the underlying implication that this patient is and always will be the doctor's all time favourite. There is a particular group which needs this encouragement badly, wanting:
To be cared for however unlovable: as a young nurse the hardest lesson I had to learn was how to show all patients equal concern and interest, even the ones who stank, who coughed and spat revoltingly, who were triply incontinent (triply inasmuch as they always seemed to produce their most malodorous releases of flatus when I was tending to them) and who had eyes that were full of greenish exudates. I also had to learn how not to retch when they vomited or when they coughed and spat. Only those of us who have had need of this medical/nursing ability to dissemble can know how important it is. And now, to go from the truly sublime to the very irritating indeed, patients are for:
Requiring signatures on passport applications and similar extremely annoying trivia: There are GPs I have heard of who demand sizeable fees for appending their scribbles to the backs of ghastly passport photos and suchlike and I can't blame them. But I beg you not to blame the patients who make the requests. Attack instead the bureaucracy that demands it.
There is another thing that patients believe that they are for, and it is one that exercises greatly the minds of many of us. We are for:
Escorting through death: I, like a great many other patients, would like to be sure that all medical staff at all levels would, when the time comes for the inevitable ending of a life, make every effort to provide supportive, dignity-protecting and genuine care. Sadly, all too often hospital-based medics step back, leaving it to the family to cope with what time a GP has to spare them and, if they are lucky, the care of a specialist nurse. Old people tend to be the most neglected in this way, in my experience. Though I have at this point to express a deep and undying gratitude to a geriatrician who recently treated an elderly relative. He saw him at home at frequent intervals as well as in hospital, and continued to care for him, even though there was no doubt that that his death was inevitable. There is a great deal that can be done for a patient even after a disease process has triumphed and is galloping full tilt for the finish, and he did it. Of course, this geriatrician did what all patients want all of their carers to do at all times because patients are for:
Being kind to: There is not the least doubt in my mind that a doctor or other health worker could get away with literally murder, as long as he or she did it with kindness, warmth and an air of sympathy. Dr Shipman had many patients who even after he was found out commented on what a nice kind chap he had always been. And many are the so-called alternative practitioners who offer nonsensical nostra and pseudo-scientific chatter and then pocket comfortable sums and get away with it on account of being "ever so kind". Patients given even the most skimmed a portion of the milk of human kindness will forgive almost anything.
There, then, are the ten things patients think they are for. We must now turn the mirror the other way and look to see what doctors think patients are for.
So, as far as doctors are concerned, patients are for:
Curing the patients' reasons for wanting this are obvious. What are clinicians'?
Well, one has to assume that it was what he or she came into the profession to do. It must come as a shock to those eager students when they are told by their teachers at the start of their careers that cure is a word to be used very sparingly. Speak of giving relief, speak of amelioration, speak of repairs, but be very, very careful about discussing cures - they are few and far between and if you offer one and can't deliver patients will never forgive you. And the next one?
Being grateful: Having someone look at you with swimming eyes filled with something akin to worship because you've done a competent job, as you were trained to do, can be embarrassing at one level, but deeply, gloriously satisfying on another.
Nurses get a very large dollop of gratitude if they do their job even half well. I had a letter only last week from a middle aged woman I had nursed when she was a child back in the fifties. I confess to having no memory of her at all but she listed all sorts of things about her memories of me that made my day. Indeed, I think perhaps it's made my year.
Those are the lofty uses for patients, now its time for the mundane. They are for:
Making a living: This one is not as high on the list in the UK as it is elsewhere, notably in the USA. I have met a great many US doctors and they have all been, without exception, extremely comfortably off merging into downright rich. Swimming pools to die for. On both sides of the Atlantic, this use of patients moves on to another level when it is time to use them for:
Building a career. A modest living can be made in the UK with the most basic of medical qualifications and top-up education of the sort now demanded, but if you really want to Get On, papers are required. Published Papers.
Often, of course, patients are for:
Providing teaching material: Medicine is an art and craft as much as a science, because the objects of the practice of medicine are sentient human beings; all of them different, all with assortments of symptoms instead of nice tidy syndromes, all with their own special complications of gender, age, race, social class, degree of poverty and all the other imponderables that go to make us all so fascinating. The only way a doctor or a nurse or a physio or any other therapist can learn their job is by putting their hands on people and using their own eyes to look at them, their own ears to hear them and, a sometimes neglected but in my experience very important aid, their own noses to smell them. This use of the honest-to-goodness ailing person leads on to another. Patients are for:
Being research animals: A rather odd looking doctor used to come sometimes to the men's medical ward at the Royal Northern Hospital where I trained as a nurse in the fifties and ponder over those of our patients who had carcinomatosis and were there waiting to die, and to some of them he would administer some muddy brown liquid from a bottle he carried in his hip pocket.
He had this crazy notion, sister told us with a sniff, that it might be possible to treat cancer with drugs. We thought he was barmy. I stopped him one day and asked him what he was doing.
"Experimenting on 'em." he said, with commendable directness. "Is that right when they're so ill?" I asked. He clearly thought I was the one who was barmy. "What possible use are they to anyone else but me in that state?" he said and left me gaping. Next day I was transferred to theatres, I remember, and glad to get there.
I do not suggest that researchers are quite so cavalier these days. But I do know that medicine and its practitioners still need to use human beings for research as they set about their vital business of pushing forward the frontiers of medicine. One problem with research is of course that it is even more likely, if badly organised, than other forms of medical practice to lead to one of the most unpleasant uses of patients:
For being sued by on the whole, British patients are not particularly litigious, usually wanting simply an explanation, an assurance it won't happen again to any other patient and an apology when things go wrong. Evidence shows, however, that some of us are looking more sharply across the Atlantic than usual, especially now the legal concept of fighting a case on a "no-win, no-fee" basis has arrived here.
In case you feel I am being too cynical, do let me agree that one of the most important uses of a patient from the point of view of good, caring, well-balanced and well-disposed clinicians is as an:
Object of altruism. To this day many people - and I here include patients as well as doctors and all other health workers - feel a deep and genuine drive to take care of others, to minister to their needs to relieve pain and misery of all possible kinds, to do what Florence Nightingale, now slowly toppling off her pedestal, once described as the core of nursing. To comfort always. I have to admit, however, that altruism may come mixed with other motives. One of them may be the need to find a way of:
Escaping from real life Hospitals, surgeries, operating theatres and clinics are intensely exciting and romantic and diverting places when they're not being exhausting, disgusting, dangerous, frightening and sickening, that is. For people who lack the social skills needed to build satisfying personal relationships, being with colleagues and, above all, patients can be very comforting. Patients ask a lot of you, of course, but not as much as a lover or a child of your own might demand. I have to say I have met many nurses and doctors and others during my many years hanging around hospitals who fit into that category all too neatly.
There remains one final use of patients by doctors in particular and it is one that was expressed most neatly by a surgeon I knew well, for whose theatre cases I regularly acted as scrub nurse. He was MacNeill Love and he would tell each new houseman the same thing on his first day.
"Young man, a surgeon's career is in three stages. The first is to get on. The second is to get honour. And the third is to get honest."
I end by offering you, as I promised I would, the Politician's answer to the question "What Are Patients For?" I will list them while making no attempt to qualify them in any way. I rather doubt I need to. You will know the detail perfectly well:
For winning votes
For losing votes
For lying to (about waiting lists, quality control - "of course we don't allow post code prescribing" - and practically everything else
For appearing to spend money on while doing nothing of the sort
For counting and recounting in order to obfuscate true facts (see "for lying to" above)
For whipping the opposition at all times
For blaming ("you dare to ask doctors for antibiotics, you miss your appointments, you use the Internet!") and being the cause of all NHS problems in general
For sucking up to come election time
Screening for Breast Cancer: A cruel deception
"For every complex problem there's a simple solution; and it's wrong"
Why do I have a problem with screening and why do I appear to be out of step with the agents of the State? This question really bothers me. I have devoted my professional life to women's health, I come from a family with a bad history of breast cancer, I've studied the disease for the best part of 30 years and still I don't get it! Perhaps it's because I have an unusual perspective on the subject?
For example unlike those who deliver the screening programme I am at the sharp end, picking up the pieces after a screen detected abnormality drives an innocent woman crazy with fear. I'm also fairly numerate having been the principal investigator of many multi-centre randomized trials of the treatment of breast cancer. Finally I was responsible for setting up one of the first screening centres in the UK following the Forrest Report in 1987. This centre at Butterfly Walk, Camberwell, South East London not only serves the local population but acted as the training centre for the whole of the SE of England. I know a bit about screening, so why my problem?
Public perception of risk
Each year we enjoy breast cancer awareness month or what I choose to call "Black October". Each October women are advised to practice breast self examination (a thoroughly discredited practice ) and are reminded that their risk of developing the disease is 1 in 11. This number is true only if a woman outlives all competing risks to reach the age of 85 with 25 out of 26 women dying of other causes. It is essential therefore that both doctors and the lay public understand the risk of developing breast cancer in the age groups invited for screening and understand the expectation of life after the diagnosis of breast cancer in the absence of screening in order to appreciate the absolute value of submitting themselves to screening.
However before we get into that I wish to describe some of the biases inherent in mammographic screening which support my somewhat counter-intuitive view that screening ain't all that it's cracked up to be.
Biases in Screening
Lead Time Bias: Say you get on a train to Edinburgh that crashes at Newcastle, then the duration of your fatal journey depends on your departure point. If you leave from Milton Keynes the journey lasts two and a half hours whereas if you leave from Kings Cross it is three hours... but you still die at the same time. In other words merely shifting the period of observation of breast cancer to the left might extend survival from the point of diagnosis without necessarily extending the duration of your life.
Length bias: If you were to trawl the sea for fish with a slow boat you'd catch the slow fish but miss those who can outswim your trawler. In other words if you trawl the female population for breast cancer at intervals you will catch the slow growing cancers that might be cured if allowed to grow to a clinically detectable stage whilst missing the rapidly growing cancers that appear in the intervals between screening and are probably the ones that will kill you in any case.
Class bias: Not all women invited for screening are "compliant" and graciously accept your invitation. The affluent upper classes who are health conscious tend to accept, whilst the poorer-educated lower classes may ignore your invitation or never get it in the first place because they maybe of no fixed abode. Futhermore we know that the outcome of treatment, stage for stage, is better amongst the better off so the apparent benefit of screening might just be a surrogate for class.
To get round these biases in order to truly assess the value of screening it is necessary to carry out randomized trials in whole populations with the outcome measure being breast cancer mortality. At the same time for all we know the intervention and its consequences might indirectly impact unfavourably on other causes of death. Ideally therefore the trials should be sufficiently well powered to look at all causes of death.
The trials of screening and relative risk reductions
There have been eight randomized or quasi-randomized trials of population mammographic screening for breast cancer and a number of observational studies which I will choose to ignore because of the biases described above. In addition there have been a number of attempts to conduct a meta-analysis of all these studies to improve the precision of the estimate. Finally there was the 2001 Cochrane review1, which attempted to weight the studies for quality before providing a summary statistic. Let us first dispose of the latter. This provoked the editor of the Lancet, Richard Horton to state, "At present there is no reliable evidence from large randomized trials to support mammography programmes". This then provoked the screening enthusiast to cry foul!
Whatever the merits or flaws in the Cochrane review there are a number of unassailable facts that emerge. The Canadian study, that produced a negative result, was the only one with individual randomization with informed consent. The HIP study New York, which produced the most favourable result, excluded 336 subjects in the control arm because of a past history of breast cancer compared with 853 in the screened population. The Edinburgh trial, which randomized according to postal district, ended up with huge imbalances in socio-economic factors favoring those invited for screening. Finally the largest effects were seen in the trials with the worst equipment and the longest screening intervals.
We therefore start off with the concern that screening has no proven effect.
Let's leave that for a moment and consider the more optimistic estimates produced by two overview analyses, Kerlikowske et al in 1995 and the US preventive services task force 2002. Neither could show a significant advantage for women under the age of 50 (in fact the latest result from the Canadian trial for the over 50 group actually showed a detriment for the first 10 years!) whereas their estimates for the under 50 age group varied between a hazard ratio of 0.76 (i.e. a relative risk reduction of 24%) and a hazard ratio of 0.84 (i.e. relative risk reduction of 16%) for breast cancer specific mortality. It is worth noting that most promotional material for screening includes a statement to the effect that screening will reduce the woman's risk of dying of breast cancer by 25%.
Let us now compute what that means in absolute terms so that an individual woman can work out her chances of benefit following a decade of mammographic screening. I can promise you that the numbers I describe are not in dispute but simply not offered up to the lay public.
The risk of a woman aged 50-60 for developing breast cancer is 2/1,000 a year or 2% over a decade(20 out of 1,000). The anticipated 10 year survival for clinically detected breast cancer in the absence of screening today is about 75%. Therefore we can expect 5 deaths per thousand women from breast cancer over this period (75% of 20). The relative risk reduction for screening applies to these 5 women. From the above overviews a realistic estimate would be the saving of 1 life (a relative risk reduction of between 16 and 24%). Therefore one in a thousand women stand to benefit from a decade of screening whilst 999 have to share the cost and by this I don't mean financial cost but the price in terms of "side effects".
This is what is meant by, "framing the result". Each year I play a little game with the senior postgraduate students at a course for specialists in breast cancer run by the Royal College of Surgeons of England. I tell them that there are two potentially effective screening tools for prostate cancer - one which will reduce their chances of dying from the disease by 20-30% whilst the other will save one life after 10,000 years of person screening. As a consumer or as a public health official which would you buy into? They all vote for the first and none vote for the second; yet if applied to breast cancer, they are the same. To continue marketing screening in terms of relative risk reduction in breast cancer mortality is disingenuous in the extreme.
The down side of screening
Of course if screening were as innocent an intervention as wearing seat belts or fluoridization of the water supply, then apart from opportunity costs, there wouldn't be a problem. However screening is by no means an innocent activity.
Like any other imperfect screening tool there has to be a balance between sensitivity and specificity. Sensitivity is a measure of the ability to detect those cancers present in the population whereas specificity is a measure of the accuracy of the screening tool. These two measures tend to pull in opposite directions. For 100% sensitivity i.e. not missing a single cancer, specificity will fall and many women with benign changes on mammography will be recalled for biopsy. There always has to be a delicate balance between these opposing needs, to catch all the cancers whilst protecting women without cancer from false alarms and unnecessary invasive procedures. Even at its best for every cancer detected another woman will have a false alarm. Whereas at its worst, fuelled by a fear of litigation, the cumulative risk of a false alarm over a decade of screening is around 40%.
All this unnecessary surgery has its morbidity but also tends to throw up pathology of borderline significance. The lay public can be forgiven in thinking that a pathologist can make a clear distinction between cancer and non-cancer, but sadly that is not the case. There is a whole spectrum of abnormalities ranging from epithelial hyperplasia with or without atypia, lobular carcinoma in situ, low grade duct carcinoma in situ (DCIS), high grade DCIS, micro invasive DCIS and tubular carcinoma of uncertain significance and unknown natural history. A conservative estimate would suggest that fewer than half of these would threaten a woman's life if left undetected and yet they account for 20% of "cancers" detected at screening. Furthermore many of these cases have field changes that affect the whole breast leading to a mastectomy for what might be a non-progressive condition. As a result the screening programme cannot claim that there is a net reduction of the mastectomy rate in the population, the opposite might be the truth.
Next there is the issue of "lead time". If the woman with the screen detected cancer is either doomed to die or at the other extreme diagnosed with a cancer that would have been curable even if left to develop to the point of clinical diagnosis, she will live as a "breast cancer patient" for one or two years longer than needs be.
Finally women invited for screening should be aware that the detection of DCIS with all the uncertainties described above might have an effect on the premiums for their health or life insurance. In fact I would go further and advise women intending to accept the summons for screening, at the same time they are buying a house, to postpone the event until after they've negotiated their mortgage.
Where do we go from here?
I believe that to carry on complacently now that we know the full costs and benefits of screening is NOT an option, so what should be done? In an ideal world I would recommend that we shut down the service and divert the resources (opportunity costs) to other issues to preserve the health of women. This might include improving the clinical care of women with symptomatic breast cancer as for example getting rid of the 12 week waiting list in some parts of our country for postoperative radiotherapy. We could also fund first class breast cancer research with the £50,000,000 a year so released. The promise of improved treatments holds more than improved screening which has nowhere to go.
Prevention of heart disease and osteoporosis would save more lives than the prevention of breast cancer yet the strategies could well be the same with the use of selective oestrogen response modifiers (SERMS).
However I see this as politically inexpedient so the best I could hope for here might be a shift in the screening window, to the 55-69 age group where sensitivity and specificity might be improved.
Finally if nothing else I believe there is an ethical imperative to offer women full informed consent with the risk and benefits spelled out in terms that don't patronize or deceive them. If after that the women vote with their feet - so be it.
Professor Emeritus of Surgery at University College London
Olzen O, Gøtzsche PC. Cochrane review on screening for breast cancer with mammography. Lancet 2001; 358: 1340 - 2.