The membership of HealthWatch increased from 157 to 232 in the last 12 months. Our website, now revamped and including full text versions of all newsletters more than a year old as well as edited highlights of current newsletters, has to date received 7290 hits and receives frequent mentions in the media.
This year's AGM will take place at the Inns of Court City Yeomanry, Lincoln's Inn, Chancery Lane, WC2A 3TG beginning with reception at 6.30pm, followed by the meeting and talk by Claire Rayner. At 7.30pm the HealthWatch Annual Award for enhancing informed choice through reliable information will be presented to Mrs Rayner in recognition of her years of dedicated support of the public's right to quality health care.
One of the panel asked to comment on this predicament was Geoff Watts, vice-chairman of HealthWatch. The media have a key role in disseminating not just established views, but dissenting ones: views which, although rejected by orthodox scientific opinion, become widely known and sometimes widely accepted.
This issue includes a full report based on what Geoff Watts - himself a science and medical journalist told the meeting.
Dr Bender, a senior lecturer in biochemistry at University College London and a HealthWatch Committee member, was quoted saying that there is in fact no scientific evidence to support detox diet claims, and dismissed them as an unhealthy but persistent fad. "There is some mysticism behind the idea that stems from the fact that a lot of Eastern religions advocate fasting for cleansing the body," he said.
"But there are no health benefits from following these diets. The body is perfectly adept at ridding itself of unwanted toxins in food. On average we each consume a lethal amount of caffeine every day, but it doesn't kill us because, like all harmful dietary substances, it is broken down in the liver and excreted. No diet fad is capable of influencing a fundamental physiological process."
After this article was published in The Times Dr Bender acknowleged that average, or higher than average, consumption of coffee does not provide a lethal dose of caffeine, but considerably less. Nevertheless, the point that the liver normally breaks down potentially toxic compounds very rapidly, so that they are rendered harmless, remains valid.
The growing involvement of sponsors in medical research has led to concerns and on 15th September a group of leading international journals including the Lancet, the British Medical Journal and the Journal of the American Medical Association have published published a joint Commentary outlining those concerns.
Economic pressures, says the commentary, are creating an environment where the pharmaceutical industry, who are often sponsors of medical research, may exert control of trial design, access to raw data, and the interpretation of study findings. Research sponsors may influence decisions as to how trials are published and promoted (if the results are favourable to the sponsor), or obscured (if unfavourable).
The international committee of medical journal editors (ICMJE) has consequently strengthened its guidelines to enable editors to restrict the publication of research to studies where the scientific objectivity of the research is not compromised.
Lancet 2001; 358: 854-856.
J Occup Env Med 2001; 58: 626-30.
It will train doctors to combine conventional medicine and alternative treatments, such as homeopathy, Ayurvedic medicine and acupuncture, and will have up to 100 beds.
The proposed hospital, which is due to open in London in 2003 or early 2004, is to be overseen by Mosaraf Ali, who runs the Integrated Medical Centre (IMC) in London. He is also responsible for raising finance for its construction. Ali, who trained as a doctor in Delhi and Moscow, has a client base said to include the prince and celebrities such as Geri Halliwell and Kate Moss.
Sunday Times, August 26 2001
Opposition to those who would take astrology too seriously is reported in the newsletter for the Chronicle of Higher Education (6th September, 2001): "The Supreme Court of India has agreed to hear a petition lodged by academics seeking to quash the government's decision to allow universities to award degrees in astrology. The move comes amid increasing criticism that the government's nationalistic Hindu campaign is damaging higher education."
Pete Moore of the MJA, proposing the motion, said that it was due to the persistence of a journalist that excess mortality was exposed among Bristol babies having heart surgery. Without pressure from the media this problem would never have been thoroughly investigated, and systems would not have been set up to prevent similar events in future. Adverse events occur in about 11% of hospital patients, and about half are avoidable1. It was the duty of the media to bring these to light, and thus to counteract the tendency of the administration to cover up mistakes. He rejected the argument that exposure of medical mistakes fostered distrust of the medical profession, and cited the House of Lords Select Committee report in 2000 which showed that 89% of the public trust doctors, but only 10% trust journalists. Therefore exposure of medical mistakes was a valuable contribution from the media towards improving the performance of the health service.
John Garrow, from HealthWatch, opposed the motion. He said it was not true that the media were the primary monitors of health service performance: the medical profession were answerable to the criminal and civil courts and to many other regulatory bodies2. There were many examples of doctors who were struck off or suspended from the Medical Register without any contribution from the media.
In cases where the media were heavily involved there was often an unjust outcome, which was contrary to the public interest. For exmple, Dr Ken Williams was instantly sacked as chief executive of his hospital trust when the media published a photograph of bodies on the floor of the hospital chapel, but subsequently it was evident that he was set up. Prof van Velsen deserved to be struck off for his wholesale retention of body organs at Alder Hey Hospital, but the Minister so over-reacted to the media outcry that consent to autopsy is now chaotic3. Recently investigative television producers were censured for unfairness by the Broadcasting Standards Commission4. Dr Prendergast at Great Ormond Street Hospital was not using an unusual and potentially detrimental regimen to treat children with ME, as the Panorama programme suggested.
A Channel 4 News item accused one senior doctor of turning a "completely normal" 11 month old infant into a severely brain damaged child by using an "experimental treatment", but in fact this child had been extremely ill in the ITU of another hospital before she was transferred to North Staffordshire Hospital. In another story about the same "scandal" the mother of a baby who had died told Channel 4 that her consent form had been forged by the hospital doctors, and invoked patient confidentiality to prevent the hospital authorities from showing reporters the valid consent form which she had signed5. Thus, when doctors are falsely accused of wrongdoing, they may be prevented by patient confidentiality from producing evidence that would prove their innocence.
Perhaps the most striking example of the anti-social effects of media intervention is that of Dr Ludwig Gortner who was in charge of an ITU for infants in Germany. He discovered that a strain of Klebsiella was resistant to the antiseptic solution used for sterilising equipment, so the antiseptic was actually transferring infection from one baby to another. He reported this finding in the medical press, but the German tabloids felt duty to expose his mistake. His staff are now facing police prosecution, colleagues are withdrawing from collaborative research, and his unit may be forced to close6. If the media make scapegoats of doctors who frankly admit their mistakes this will not create the climate in which mistakes are admitted, which is a necessary condition if mistakes are to be avoided7.
There followed a lively discussion. Among the points made were: It was by publicising mistakes that pressure could be put on health authorities to improve the system; It was arrogant of doctors to think they understood the views of the public about the fate of their body parts; We need a stronger body than the PCC to monitor press hyperbole about medical mistakes. In a final vote equal numbers voted for or against the motion.
John Garrow
Emeritus Professor of Human Nutrition
University of London
References
There can be no denying that piles are horrid. Dinner party topic they are not, and they are way up there on the list of embarrassing medical conditions. Thus they are perfectly placed (so to speak) for the alternativists to set to work. The Observer's Barefoot Doctor (1st April 2001) is in no doubt.
He's probably right that piles (being no more than varicose veins of the back passage, and therefore likely to bulge when full of blood) are less of a problem if you stand on your head. So he suggests squeezing the anal sphincter "nine times or so" while doing head stands. Not much use when hanging onto a strap in a crowded tube train though.
But the full story involves the spleen. The spleen is actually an organ that is important in fighting certain infections and in storing blood, but Oriental medicine (which is Barefoot's authority) reckons it holds things up (piles included) against gravity. So what could be more logical than using acupuncture needles on the crown of the head "to stimulate a pull through the torso to lift the piles back up"? Probably best not to think of how long those needles would need to beÖ
A few weeks later the Barefoot Doctor advises a reader (Observer, 20 May 2001) against the habitual use of valium. Wise advice. But before we become too congratulatory, what's this next reader's problem? Someone wants to know exercises to strengthen the thyroid gland.
This is a bit like Chomsky's famous example of syntactically correct nonsense: "Colourless green ideas sleep furiously." The thyroid gland (which is on the front of the neck, just below the level of the voicebox) can be overactive or underactive, but it can't be strengthened, by exercises or by any other means. The Barefoot Doctor does not hesitate: the thyroid gland can be strengthened byÖwait for itÖshoulder stands! The logic seems to be that lying with your legs perpendicularly in the air, shoulders on the floor, and supported on your elbows increases the circulation to the thyroid. If anything, this rather uncomfortable manoeuvre (Barefoot does suggest visiting a yoga teacher first) would probably reduce the blood flow to the thyroid by engorging the veins, increasing back pressure, and slowing the flow in the arteries.
If I were Veda Shortland, who sought the advice all the way from New Zealand, I would skip the shoulder stands, and take Barefoot's final advice: consult your GP. With luck, they will first check your thyroid gland is working properly, and then explain that strengthening the thyroid is much like awakening your toenails.
Neville Goodman
Consultant Anaesthetist
Southmead Hospital, Bristol
See also the article by Neville Goodman in Newsletter no 45
I am not at all certain that the message I bring is one which many people concerned with this problem will want to hear. The reporting of contradictory opinions and the publicity given to dissident or simply ill-founded views are not problems of reporting science and medicine in particular. They are problems of reporting in general. They stem from a free press, and the nature of what our society has decided constitutes news.
So what is news? The important - yes. But also the bizarre, the secret, the sensational, the heart-breaking, the dramatic, the forbidden. Above all the exceptional. What happens all day, every day, everywhere is not news. In one sense this is a cause for rejoicing - and the reason why some peoples' wish for the media to eschew bad news reporting in favour of good is unlikely to be fulfilled. The media are less preoccupied with good news because it is not exceptional. Planes landing safely are an everyday occurrence; planes not doing so are, fortunately, the exception. The lone voice who claims a modicum of expertise and is saying something different is exceptional. That makes him or her interesting to the media.
There are also a few facts about the nature of the media that have to be borne in mind. First, on whose behalf are they operating, and in whose interests are they setting out to serve?
One question that a specialist correspondent might ask in pondering a story about, say, the opinions of a dissident researcher would be, "Are this man's views going to catch the interest of my readers and listeners?" Not, you will note, "Are these views seen as correct and rated important by doctors and scientists?" Likewise not, "Is this story important to an objective socio-political understanding of present circumstances?" but, "Will my readers and listeners think it's important?" And not only, "Do I, as a specialist correspondent, think this is important?" but also, "Can I persuade my editor that it's important?"
In short, what a majority of doctors think is right and important, and what might be good for patients, is not necessarily what's important to journalists (i.e. what gets read and listened to).
This is not to suggest that journalism should have a licence for irresponsible reporting, or that journalists shouldn't think about the consequences of what they say and write. Some do all the time, some do none of the time, and most try to most of the time. But most are working for commercial enterprises, or for organisations that have to behave broadly in this manner.
You may ask why the media can't concentrate on what is right and important, and ignore the rest. This raises certain questions: not least, who should define what is right and important. There are, of course, alternative models. So, a cautionary tale.
The old Pravda printed all news that the nomenclatura felt it good for citizens of the Soviet Union to read. Some of this was lies, but much of it (tractor outputs, speeches by minor officials, cereal production statistics, tales of devoted self-sacrifice for the good of the Party) was possibly true, though tedious to read. And there were omissions. Air disasters, for example, were seldom mentioned. Were Soviet citizens less worried about flying? If so, perhaps Pravda's reporting was good for their peace of mind. But does this justify the selection of the paper's news menu?
In short, other options are possible - but at a price.
Another factor causing problems in medical reporting stems from the nature of scientific medicine itself. New developments or changes of opinion among doctors and researchers in the light of new evidence lead to new or conflicting advice. The alleged links between coffee and pancreatic cancer, heart attacks and various other conditions; the changing fortunes of dietary fibre - once derided, now applauded; and a score of other examples.
In scientific medicine change is unavoidable. There is no fixed and final view on anything because all science is provisional. But reporting these changes often confuses the public who wrongly see the word "scientific" as meaning "definitive" rather than "the best explanation to hand". The media (often unfairly) get the blame for confusing the public when they are merely reporting these developments.
If the media have a responsibility, it is not to ignore reasoned dissident opinion, but to make clear its status. When they fail to do so, it may be that the urge not to spoil a good story is irresistible.
So what to do? One Swedish doctor/journalist (Ragnar Levi) has proposed a remedy, and written a book outlining what he thinks needs to be done. (See review in HealthWatch Newsletter issue 40, January 2001). His remedy: a journalistic equivalent of evidence based medicine. He would put the onus on journalists to act rather like the peer reviewers of medical journals.
In the meantime: a more modest proposal. We could persuade editors to take more notice of their specialist corespondents. On matters like BSE and GM foods, some specialist correspondents despair of the coverage in their own papers. That is something that can be addressed.
Geoff Watts
HealthWatch Committee Member
I have no axe to grind over pharmaceutical companies. As a journalist I merely report that experts in the field are worried about some of their practices and that good researchers have raised doubts about the safety and efficacy of their products. I contrast this with evidence from reputable sources that non-drug therapies can be both beneficial and have fewer side effects. The question then arises - why does one have millions of marketing and research support, while the other gets by on a shoestring? One obvious conclusion is that it is about money rather than science.
I'm not just name-calling. In my article I quoted some fairly damning evidence from respectable journals to show that pharmaceutical companies fudge their results when it suits them. And this practice continues. Here is the opening paragraph of a story in the Sunday Times August 12: "The world's most prominent medical journals, including The Lancet and the British Medical Journal, have joined forces to stop drug firms "cheating" on medical studies and refusing to publish bad results." This is a serious issue. If you are going to wrap yourself in the mantle of scientific respectability, in contrast to all these alternative folk, then you can't cheat (and I'm not here referring to the authors of this study personally). And if drug companies were to cheat, people would be entitled to question their results, especially when they coincide with drug company interests.
To say, in their defence, that antidepressants have saved and improved millions of lives worldwide is wild hype. There is a serious question mark hanging over the effectiveness of antidepressants and there are numerous studies which have found little difference between them and a placebo. Readers who want to take the matter further might care to look at a review by Irving Kirsch of the University of Connecticut, entitled "Listening to Prozac but hearing a placebo: a meta-analysis of antidepressant medication", published by the online journal Prevention and Treatment (Volume I, June 26 1998). There is also a damming overview of depressants in a recent book "Fragile Science: the reality behind the headlines" by Robin Baker (Macmillan). This shows, among other things, that not only are anti-depressants not demonstrably better than a talking therapy, but that no-one knows which one is suitable for which patient. Although some individual patients are undoubtedly helped, about 40% aren't. Overall, since the condition is largely self-correcting, the results of all interventions are little better than doing nothing. For anyone who remains unconvinced "The Undiscovered Mind" by John Horgan, published 1999 by Weidenfeld and Nicolson, provides even more detail on the failures of antidepressants. None of these sources, I appreciate, is the final word, but they do indicate that my rather skeptical view of antidepressants does not reflect extreme prejudice but is based on evidence.
Because there are serious doubts about the safety of the SSRIs as well. I quote from another recent newspaper report, this time the Guardian (July 10 2001). "People prescribed anti-depressant drugs like Prozac and Seroxat may be at increased risk of suicide soon after starting the medicine, the British pharmaceutical company GlaxoSmithKline has acknowledged." This refers to the recent court case which resulted in 6.4 million dollars compensation after a man on Seroxat killed his family and committed suicide. A well respected researcher, who was a witness in the case, Dr David Healy told the court how he had discovered that in the early trials of Seroxat on healthy employees 25% became "disturbingly agitated". Again not conclusive - what in these debates ever is? - but certainly enough to make it wise to question the assertion that antidepressants have saved and improved millions of lives. To suggest that the most dangerous treatment for this serious and life-threatening condition (depression) is one that doesn't work can hardly be true if the treatment itself drives a proportion of patients to suicidal rages.
Medicine Today has indeed run features on reflexology, acupuncture, xenoestrogens and Tibetan herbs - but it would be wrong to imply from this that I am an unthinking supporter of all things alternative. In fact this is not a fair representation of what the newsletter does.
The whole aim of Medicine Today is to take an evidence based approach to latest developments in medical research. The point of featuring the above subjects - a total of 5 out of 48 since our launch a year ago - was to look at what the evidence was, and provide references to the findings. Should HealthWatch readers care to subscribe, they could read about the latest studies on these therapies - positive and negative. Our coverage of non-drug therapies is more than balanced by our coverage of mainstream medicine. We have run several features about latest findings in genetics - such as how junk genes may be doing something after all and an account of the attempts to find a genetic switch for weight loss. We have also covered the latest research in developing a cancer vaccine and the search for new antibiotics.
As far as funding goes, Medicine Today is totally reliant on subscriptions and takes no advertising from either drug companies or supplement firms.
Yours sincerely
Jerome Burne
Editor, Medicine Today at www.medicine-today.co.uk
Public relations companies have mailing lists of health writers to whom they send helpful information about the activities of their clients. The HealthWatch office received such a letter from "Partners in Practice" about a survey done in conjunction with the Herbal Information Centre concerning the advice on herbal remedies given by Practice Nurses.
The surprising results were summarised thus: "Over 95% of the Practice Nurses questioned are regularly asked by patients for advice about herbal remedies. These practice nurses are able to offer such advice. The herbal remedies most often recommended by respondents were St John's Wort for mild to moderate depression (77%), garlic for heart and circulation (62%) and soya isoflavones for menopausal symptoms (56%)."
The implications of this statement (if true) are rather alarming. If 73% (0.95 x 0.77) of patients are being advised by practice nurses to take St John's Wort it is likely that some were pregnant, but these herbal remedies are contraindicated during pregnancy. There is also risk of interference with other medication1. St John's Wort decreases the effectiveness of the combined contraceptive pill, or anticoagulants, while garlic increases tendency to bleed, which is undesirable for patients due for surgery.
However, on further enquiry, it becomes clear that the situation is not as described in the press release. The questionnaire was sent out to "nearly 400 nurses", of whom only 140 replied, and of these 140 responders 95% ticked the "Yes" box in answer to the question "Do patients ever ask you about suitable supplements/herbal remedies for specific conditions?" So a more accurate summary would be: "Of the nurses surveyed 33% reported that they had been asked about supplements or herbal remedies."
The press release statement that: "These practice nurses are able to offer such advice" is even more misleading. It implies that 95% of practice nurses are competent herbalists, but none of the seven multiple-choice questions in the survey relates to the nurses' training or competence in herbal medicine. Question 3 is: "If you do not recommend herbal supplements to your patients please tell us why." This question was answered by 16% of respondents (i.e. about 23 nurses), so obviously only 84% of responders (30% of those surveyed) actually recommended herbal remedies. Of those who answered question 3, most gave the reason that they did not know enough about the products to make confident recommendations.
It is ironical that the press release comments "Patients are starting to take more interest in their own health care, and self help and herbal remedies play an important role in this." Few would deny that well-informed self-help can make a major contribution to a patient's own health care, but the same cannot be said for self-help based on misinformation.
It appears from this press release that the Herbal Information Centre is not only concerned with its stated aim: "to provide up to date, research based information on herbal medicines for journalists, health writers, health professionals and the general public." It is also concerned to help its sponsors to sell their herbal products, even if this involves a biased account of its own research.
Should we dismiss this as simply another example of the licence, to which advertisers feel entitled, to exaggerate somewhat the merits of the product they are promoting? But this is a somewhat different strategy: the press release tries to hijack the professional authority of Practice Nurses, whom patients trust as a source of reliable and impartial advice on health care. Their report states: "Öthe vast majority of practice nurses (are) happy to recommend herbal remediesÖ" but their survey shows that two out of three practice nurses do not even bother to return the questionnaire, despite inducements of packs of such remedies if they do so.
Professional guidance for registered nurses, midwives and health visitors is set out in a position statement by the Royal College of Nursing2. Nurses may properly use alternative therapies if they have first successfully undertaken training in the therapy, if they obtain the consent of the patient, if they are personally accountable for their professional practice, and they undertake such activities with the knowledge and approval of their employer. It is not clear if these guidelines are being observed among the 30% of practice nurses who reported that they were happy to recommend herbal remedies. Is this advice equivalent to "administration of herbal substances"? What constitutes "training" in herbal therapy? Where does responsibility lie if the general practitioners are themselves not trained in herbal therapy? What explanation should be given to the patient from whom consent is being obtained?
Even with the most conservative interpretation of the data from the survey by the Herbal Information Centre, it is evident that very many Practice Nurses are advising their patients to take herbal remedies, and it is not clear if they are qualified to do so.
John Garrow
Emeritus Professor of Human Nutrition
University of London
References
In the black corner of orthodoxy we have medical science: detached, analytical, unswayed by anecdote, tiresomely demanding a lot of nit-picking guff about objective evidence. And in the white corner, the alternative: positive, spiritual, reassuring, life-enhancing, eager to privilege individual over group experience, and a fount of never-ending good news. Snake oil was to be another round in the continuing struggle between these two positions. And the outcome of the match? We can never know, because this particular bout never went the distance.
Despite the best efforts of committees of doctors and scientists to "Copus" the public into understanding the sweet deceptions of so much that's written and broadcast about unorthodox cures, the tide flows on. It takes someone with an insight matched by communicative craft to throw up a protective dam against the nonsense - and to make the debunking a better read than the seductive but fraudulent pitch of the original.
John Diamond had the craft it takes to deliver the insight. But he died in March. The obituaries have now been filed; and none of them mentions Snake oil because the book remained unfinished. What we do now have are five complete chapters and one half written: words that whet your appetite, then leave you hungry for so much more. I described Snake oil as another bout - but not just another bout.
It was to have been a distillation of everything about the "alternativists", as John Diamond insisted on calling them, that he'd learned during the years of the cancer that finally killed him. In the chapters he'd completed we begin to learn what, in his view, distinguishes scientific medicine from the rest, what motivates alternative practitioners, and why their message is so widely and so enthusiastically received.
With characteristic invention he weaves an elaborate and initially obscure parallel between selling chairs and evaluating unorthodox remedies. If I'm an expert chair salesman, he says, and my expertise allows me to estimate that there are 2000 chairs in my salesroom but that counting them shows there are only 1700, "it must follow that counting is the wrong method to use to determine how many chairs there are." Absurd - yet analogous to the outlook of some unorthodox practitioners who are reluctant to use scientific methodology in judging their treatments because properly controlled trials never seem to give the "right" result. That is, to show they work.
Why has complementary and alternative medicine proved so popular? Some of John's explanations will come, at least to members of HealthWatch, as no surprise. Lengthy consultations with sympathetic practitioners who are interested in more than just the immediate problem, for one thing. This is not only appealing but offers powerful placebo benefits, if nothing more. What brings this and other familiar ideas alive is the author's capacity to express them in a prose so vivid, sparkling and direct that you can believe you're reading them for the first time.
Not that all the arguments are familiar. Modern technology, he argues, is largely incomprehensible to the amateur. There's too much of it to get to grips with, and anyway it's too complicated. The CD player, the computer, the fax, the modem - they all work. And if they don't you unplug them, throw them out, and plug in a new one. "But the new medicine is something else. It has all the attributes of the new technology - complicated science, high cost, long-term development - but it doesn't work. Or at least it doesn't work as well as the rest of the new scienceÖIt has nasty side effects or works only for a short while or doesn't work at all. It betrays our trust in it: every time we think we have TB licked it comes back in a new form and licks us right back again."
Contrast that with the alternative. "When an iridologist tells us the story of the discovery of his science it's one we can understand only too easily. It reads like a fairy story: boy finds owl with broken leg; owl has big spot in its iris; boy heals broken leg, spot goes away; boy goes on to discover that by studying spots in the iris he can diagnose all illnesses. What's to understand?" In a world growing less comprehensible, alternative medicine harks back to an older, simpler knowledge.
The full title of the book is Snake oil and other preoccupations. These latter comprise 70 or so of John's published columns and articles. Some are about his illness; others feature anger, animal experiments, Judge Pickles, British hotels, the many varieties of mineral water, and the meaning of life. A piece on the proliferation of yoghurt flavours - it describes blind tastings carried out with the help of neighbours - demonstrates that while his background was in the humanities he could think like a scientist.
The unfinished Chapter Six of Snake oil - it was as far as he had got - ends with the words "Let me explain". Then nothing. How much we needed those explanations. And how sorely their absence - and that of their author - will be felt.
Geoff Watts
See also the letter from David Crosby in Newsletter no 45
This is the plan: you first choose your illness (at this early stage, the only illnesses available are hypertension and prostate troubles) and then from the list on the left you simply home in on what you want to know. The clinical information is explained simply but authoritatively (the information on the prostate cancer site has been prepared by CancerBACUP) and covers all aspects of the condition, diagnosis and treatment. There are also links to support groups and other reliable sources of medical information - nothing new here.
But where DIPEx is new and exciting is that it is building up a database of patient's own experiences with the diseases in question. Questions like, "How is this illness going to change my life?", "How will it affect my relationship with my family, friends and colleagues?", "What will it be like having this operation or taking these drugs?" and "Will I still be able to do the things I used to do?" will be answered by real people from their own personal experiences and available to web-users through on-line video clips, voice recordings or written. These, too, are accessed simply by clicking on the list on the left.
DIPEx is a not-for-profit organisation and is in the process of registering as a charity. Access to the website is free and there are plans also for it to be available on DVD at public libraries, support groups, GP's surgeries, and hospital outpatient departments. The project has been funded by the Department of Health, Macmillan cancer relief, the Citrina Foundation, the Consumers Association and the Lord Ashdown.
After visiting the site my only - admittedly niggardly - criticism is that one needs special software in order to view the video and audio clips. The home page includes handy buttons inviting you to download "free" plug-ins that will let you enjoy the filmed introductions by personalities such as Jon Snow and our own Geoff Watts. I saw these buttons and thought, I've been here before. As I expected, the buttons propel you out of the excellent DIPEx site and into a parallel universe of techno- jargon. When you eventually identify the item you need to download you push the button only to discover that your system is now tied into a process that will take some time. Later, on returning to your desk with a cup of tea and a biscuit, you find that your connection has failed with the software only halfway loaded. A cynic might muse that it is no coincidence that one of the first conditions to appear on the site is hypertension.
Technophobic grouches aside, the DIPEx site is a brilliant idea wonderfully executed. This is going to be a constantly available source of support for anyone whose life is touched by an illness and a highly accessible resource for the training of doctors, nurses and other health professionals and health workers. We look forward to watching its progress as it enlarges its range of illnesses and gathers more material from patients.
DIPEx are currently interviewing patients with bowel cancer and breast cancer, and will soon start interviews with men who have had testicular cancer. As funding becomes available they plan to include experiences of all the main illnesses.
Visit the site at http://www.dipex.org.
Mandy Payne