The Foundation for Integrated Medicine (FIM) - an initiative set up by HRH The Prince of Wales - is a charitable organisation dedicated to the integration of different systems of medicine and therapies, bringing together orthodox and non-conventional medical practitioners to discuss how this can best be achieved.
FIM has organised two conferences in the last two years, the first, held in 1998, taking an overview of the discussion document. The second, held last year, looked at the issue of Regulation for alternative and complementary medical practitioners.
The Foundation published the results of their working groups as a discussion document under the title Integrated Healthcare - A Way Forward for the Next Five Years?. Their report covered four areas; research, education, regulation and provision of services to patients.
Although the conference was for practitioners, we thought that you, as the patients, would be interested in two of the key speeches given. The first, given by FIM´s President, HRH The Prince of Wales and the other, by a Patron of the NMS, The Earl Baldwin of Bewdley. Both St James´s Palace and Lord Baldwin have kindly given us permission to publish the following presentations:
Opening the conference the Prince said he had "been immensely encouraged by the quality of responses to the discussion document and the many helpful and constructive comments that had been received. He went on to say ... "... I want to reflect on how far we have come over the last few years. I look back to the rather "lukewarm" response I received in 1983 as President of the British Medical Association when I first spoke about integration and complementary and alternative medicine. We have clearly travelled a very long way since that time. I believed then, as I do now, that the move to a more integrated provision of healthcare would ultimately benefit patients and their families. While it is very important to acknowledge that tremendous advances have been made in biological and other scientific research, and that we now have the prospect of successfully treating conditions that were previously considered incurable, it is equally clear that this is not seen as sufficient to fulfil all our healthcare needs.
The use of complementary therapies continues to grow - you will know the figures better than I do, but nearly 5 million people now use them every year and about 1 in 3 people use some form of complementary therapy during their lives.
Why is this so?
I believe it is because complementary and alternative approaches to healthcare bring a different emphasis to bear which often unlocks an individual´s inner resources to aid recovery or help to manage living with a serious chronic illness. It is also because complementary and alternative therapies often offer more effective and less intrusive ways of treating illness. This approach places at its centre the active engagement and involvement of the patient. These ways tend to be less distressing for patients, have fewer side effects and are sometimes less costly than the latest drug and surgical interventions.
To my mind, the most significant change has been the growing acceptance by sections of the orthodox medical and caring community of this approach - which combines the physical, mental and spiritual aspects of healing. It is a tremendous tribute to everyone here that there is a growing acknowledgement of this more rounded approach and we need to continue to build on this achievement.
One of the most crucial areas that will assist us in doing so is that of, Regulation. Your conference theme is "professional competence - public confidence". Regulation is one of the major objectives identified in the discussion document recommendations.
I was delighted to play a part in the campaign for the statutory regulation of osteopathy which has shown what can be achieved with a focus on the needs of patients. I was also very pleased to see during the consultation process undertaken in preparing the Discussion Document that there was considerable enthusiasm and willingness to pursue high standards of training, regulation and clinical practice within the different alternative and complementary medicine professions. This is very reassuring. However, further progress needs to be made in regulation by some therapies. People need to feel confident that the treatment they receive from any complementary practitioner will be safe. Like conventional medicine, complementary medicine is only safe if practiced by a skilled, qualified practitioner, and can be harmful in unskilled hands. The key component to increasing public confidence has to be effective regulation, which includes mechanisms for redress for patients where necessary...
... Each CAM profession needs to decide which path it wishes to follow in order to establish arrangements which can stand up to public scrutiny. This may mean difficult choices about autonomy. It will require the putting aside of differences and the development of single lead bodies within each profession. It is also important that these developments should take into account the growing trend for other practitioners, for example doctors and nurses, to acquire qualifications in CAM therapies. They should also be subject to the same standards as CAM practitioners.
An important aspect of regulation which needs to improve is to ensure that people who use your services are provided with simple information, in order to help them use services appropriately. This should include, if necessary, information on how to take forward a complaint. It is still difficult for some patients to get information about different CAM treatments. Practitioners are best placed to provide this. I believe this places an important responsibility on you and all those providing treatment to explain fully what is available...
... Integrated Healthcare is, I believe, here to stay. The public want it and need it. It is not a takeover of the orthodox by CAM or the other way around, but is rather the bringing together of the best from both for the ultimate benefit of the patient. I look forward to your continued support in making this happen.
"I should like to start by paying tribute to the Foundation for Integrated Medicine for the work they have done on behalf of the complementary medical community. I have attended some but not all of the previous meetings and have admired the focus and commitment that have been brought to bear. My slight concern at the absence of the less powerful players in this field is allayed by today´s conference - and with a vengeance, as I find that the lot has fallen on me to speak for the group for whom the whole edifice of medicine exists: the patients. I can best do this by talking about some of my own experiences, and relating these to today´s theme of professional competence and public confidence. This goes a bit wider than just the question of regulation.... At the end I want to put on my parliamentary hat for a few minutes and look at the same issue from the perspective of Westminster.
In every question that arises in complementary medicine I try and look at things from the patient´s viewpoint. This isn´t difficult, as I reckon I have experienced more therapies than most people; I am almost a candidate for the Guinness Book of Records. My first encounter was over 30 years ago, when I developed knee trouble from overdoing things. Orthopaedic specialists couldn´t help me: one consultant told me I was trying to do an "A-l job on C-3 knees". Three years later it was a healer in a quiet residential street in Cambridge who put me on my feet again. To this day I can recall the amazement and joy at getting out of bed the next morning, pain-free for the first time. I doubt if I would have got up Kilimanjaro at the age of 59 if it had not been for that remarkable man.
That was a one-off at the time, although it set my mind working. A few years ago, however, I ran out of medical options in a bigger way, and that was where the odyssey really began. I won´t bore you with a list of the therapies I underwent, from the more orthodox-complementary to the far outer reaches of the credible.
Let me tell a little story about research, or the lack of it. Not long ago I was present at a demonstration of applied kinesiology, a form of diagnostic muscle-testing which on this occasion was concerned with the reactions of volunteers to substances in their diet or environment. Also present was a well-known mainstream professor of sceptical inclinations. He asked some pointed questions, and they were good questions. He had taken the trouble to look up the limited literature on the subject, was unconvinced, and proposed a simple trial which could test its effectiveness. I found myself the go-between after the meeting between the professor and the therapist. Not only did the therapist show no recognition of the need to respond to this overture, on grounds both of good will and good science: he did not even reply to my letters and telephone calls. Thus was lost a good chance to learn more about a widely used diagnostic tool (which all my local osteopaths seem to use), and at the same time an enemy was needlessly made in high places.
In fairness I should acknowledge the difficulty of attracting funding for complementary medical research; the problems of overworked sole practitioners trying to do it themselves, with limited know-how; and the fears around letting the mainstream do it which owe a lot to the disastrous Bristol Cancer Help Centre study in 1990. But this doesn´t excuse the lack of research-mindedness still found in some quarters, which is an essential prerequisite for the kind of map of the territory which patients, in ever-increasing numbers, so badly need. Nor does it excuse poor communication.
Wherever I have been, almost without exception, I have been listened to. I believe complementary therapists are generally very good listeners. I think it is the quality, not the quantity, of listening that matters. For example, at the end of 10 minutes with my GP I feel thoroughly heard; by contrast, there is one complementary practitioner, whose skills I otherwise admire, with whom I don´t feel I have been heard after an hour´s consultation. But he is an exception. What worries me often is who else hears me. My wife once went to consult a lady who conducted her practice in a busy clinic with the door wide open so that anyone could hear what went on between them; what´s more, she gave my wife some fairly intimate details of a friend of hers who had also been to consult her. On more than one occasion I have heard names dropped by my therapist - "The Duke of xxxx came to see me last week with your trouble"; "You know Professor xxxx, don't you? He´s one of my patients.& It is meant to reassure, of course, but I hardly need to say that it does exactly the opposite. How do I know that people all round the country may not know things about me that I thought I was telling in confidence?
This is an ethical no-no of the first order. I hasten to say I have never met it among the major therapies, let alone among doctors. I have met it, and so have friends of mine, among the less regulated practitioners. This is a strong argument for the effective organisation of therapies, where agreed standards of training and practice can be implemented to include a culture of sound ethics from the word go. [This would include, for example, a discouragement to psychics from diagnosing your supposed problems to your face without having been asked to do so, which is something else I have come across.] I have never in fact been minded as a patient to make a formal complaint; but if I were - and people are - then every therapy needs a proper complaints procedure with disciplinary sanctions that can be applied when needed. It is a mark of professionalism, for the protection of the public, which has been slow in coming. We have first-class models under the Osteopaths and Chiropractors Acts, but you donīt need to wait for statutory regulation to get these procedures up and running. Indeed, you won't come within a mile of such regulation, or be taken seriously by Government or by your clientele who are increasingly tuned in to such requirements, until you do.
I could speak about standards of competence, but that would be more from the perspective of the British Acupuncture Accreditation Board with which I was involved from its beginnings in 1989, until last Christmas. As it happens, this has not been a key issue for me as a patient. That may seem curious, but I have either gone to practitioners whose competence was not in question, or I have gone by word of mouth from people I trust, or I have gone into experimental areas where the intrinsic risks of the treatment were negligible even if the benefits were speculative. That was my free choice, and I would defend it. Also I had put a lot of background work into studying the therapies and their exponents.
For those in a different situation, which will be the great majority, the following are needed, and needed urgently: a self-regulating body for each profession or therapy, overseeing agreed standards which are independently accredited and validated, a single registering body, continuing professional development, indemnity insurance, full information for the public, together with the ethical and disciplinary requirements I have already mentioned. If I don´t elaborate on these it is partly because they don't happen to have been a major issue for me as a patient ... and because it is all set out in admirable detail on page 33 of the Foundation for Integrated Healthcare´s discussion document &A Way Forward for the Next Five Years?" which I would urge everyone involved with therapy organisations to study and if necessary re-study. It is important, it is all there, and patients need it.
At one point I was interested in the bodywork therapies. I tried to find a Gerda Boyesen practitioner. As many of you know, this may be big in Norway but it is not very big in the UK. When I got through to the headquarters I learnt that the organisation had recently split in two. This tiny therapy body had split in two! What kind of encouragement does this give to the prospective patient? I gave up at that point, reasoning that I had no way of knowing without a great deal of further spadework who was the true holder of this particular grail, and that it was hard to have confidence in an approach which made life difficult for the patient by preferring fission to fusion. That was a while ago, things may have changed, and if I do Gerda Boyesen an injustice I apologise. But the scene is familiar, isn't it? For Gerda Boyesen read any number of small therapies which seem unable to resist the temptation to divide like cells, at a time when there is a desperate need for unity.
Why, for goodness sake, are there 5 bodies listed under Radionics in the 1997 Exeter survey? Or 11 each under massage and hypnotherapy? It is no comfort to know that this happens in other countries too. One of my sadnesses is with that most powerful of treatments for chronic degenerative disease, the California-based Gerson therapy. They had hardly published a fascinating retrospective study of 153 melanoma patients in a peer-reviewed journal when disagreement over new directions in the therapy produced a division which it seems couldn´t be healed. How do patients know which facility to go to now, which regime to follow? How, when numbers were barely adequate before, will there ever be enough patients to generate statistically significant results in the future, when the two arms of the therapy are not talking to each other? I know people who have had the experience, when at their most vulnerable as patients, of having to listen to one branch of a therapy slang off its rival, making them more unhappy and confused than when they came. These things do patients no good at all, and they should not happen.
What lies behind all this? There are strongly argued views, and it is not always perversity, even if there are some overweight egos around. There is a sense in which small is beautiful: we can all understand that. And having seen, and admired, so much that is on offer among the complementary therapies, I would be the last person to want to stamp on diversity, which I believe our Western system of healthcare badly needs, not least in the field of cancer. But diversity can be attained without fragmentation, and the proliferation of small bodies is profoundly unhelpful to the advancement of natural medicine. I am not, of course, speaking of those who have worked long and hard to bring therapies together according to the criteria I outlined earlier, in or outside the Council for Complementary and Alternative Medicine or the British Complementary Medicine Association. It is those who persist in remaining unreconstructed when it's neither in their patients´ interests nor in their own to do so. Regulation is the future - it doesn´t have to be the heavy statutory kind - and a golden rule in this game is to do it yourself, with the help of your friends, before someone you donØt like does it for you. I do not believe that quackery is a major problem in complementary medicine; I have been around a lot, and I have seen almost none. The besetting sin is disorganisation.
If you won´t take it from a patient, then hear it from a legislator. MPs and Peers do not always have facts and figures at their finger-tips when debating specialist subjects. They do their best, and a few become masters of detail, but the field is wide and parliamentarians rely heavily on outside bodies for their briefings. When the Health Bill came recently to the Lords I had paperwork from the BMA, the dentists, the midwives, to name only those I can immediately remember. I´d have given anything for a succinct, briefing paper on the implications for complementary medicine of the new proposals, particularly those relating to possible future state registration. I was caught on the hop, as one sometimes is, with no time to get on top of the issues in the way I would have liked. But of course there was no briefing, because there is no organisation which can give such a briefing, whether from individual therapies or - which would have been ideal - from the perspective of complementary medicine as a whole.
All the mainstream modalities were spoken for during the passage of the Bill: a number of them even have their own parliamentary offices whose sole job is to keep in touch with MPs and Peers and see that their profession's case never goes by default. Complementary medicine´s case always goes by default, except where one or two of us in Westminster happen to be on the ball and have the time and knowledge to make a constructive contribution. I shudder to think of the opportunities we have missed. The situation is no easier in the Parliamentary Group for Alternative & Complementary Medicine, which I have jointly chaired for the last seven years: it´s the very devil trying to deal with the current threats to herbs and supplements without solid back-up from an organised constituency. People outside the movement, and many inside as well, have no idea what a disadvantage this lack of an infrastructure places on the complementary therapies and their patients.
Not long ago I wanted to say something publicly about the work being done with people with AIDS. Again, there was no central source of information, and the best I could do was get on to a practitioner I had heard of who was known to be doing some good things in this field. He was reluctant to ring me back. When eventually we did talk, I got the impression that he felt he had better things to do than brief some parliamentarian he had never met. Of course his patients should take priority. But everyone's patients will be helped in the long run if the news of how they are benefiting can be channelled in a systematic way to people who can make this known on a wider canvas. As my colleague from the Commons, David Tredinnick, is fond of saying, &Give us the bullets and we will fire them". In spite of constant appeals for likely parliamentary questions on themes of concern to practitioners, we get virtually no ammunition. (The Minister may be grateful for that!) This is partly because individuals are not yet geared to looking forward and outward from their practices, but principally because there is no organisation or culture which makes it easy to do so. I acknowledge the difficulties, which are not only of finance but also of finding the people to do the administrative and committee work to make the show run. I know this is not what most people become reflexologists or yoga teachers to do. But it has to be done, and the sooner the better. I remember Sir Norman Lindop, our adviser on the British Acupuncture Accreditation Board, telling us quite early on that the process of regulation would involve money and bureaucracy, and that there was no way round it. This may not sound attractive: but is there any other realistic way? To stay in the backwoods, unregarded, unrepresented, unable to produce evidence for what you do, which is the only way you will ultimately be accepted and break out of the enclave of small-time private medicine, while others take their place in the sun? If you have something of value to offer patients, then for heavens´ sake take the route that will promote its acceptance and future development. I happen to have a friend in the audience today called Tina, who has herself had a remarkable journey through the world of unconventional cancer treatments. Does anyone remember what ØTina´ stood for in the politics of the '80s? "There Is No Alternative". It would be good if all therapists made this their watchword on their journey towards better organisation.
I will finish in the guise in which I began. We patients need a map, and this calls for therapists who see and act on the need for audit, research, and information generally. We need to be confident of the professional ethics, as well as the competence, of the practitioners we visit. And for this we need to be met with a degree of organisation and unity which are still seriously lacking.&
The first point for a patient in my position, and it is an obvious one, is that there was no map of the territory. I had to seek my own salvation. GPs then knew next to nothing about complementary therapies, and there was no central source within the therapies which I could turn to either. There still isnīt. Although a bit more is known about the relative as well as the absolute effectiveness of homoeopathy, acupuncture, cranial osteopathy and the Alexander technique for a given condition, we are still years away from the kind of research base which can reliably guide a patient´s choices. Those who still see no point in research or audit should bear this in mind. Mine was an expensive journey, in money and time. Most practitioners were convinced they could help me (though cures were never promised), but their optimism was seldom borne out in practice. But even without the last word in clinical research, many therapies could do more to produce sober, factual information about what a patient can expect, and it would be a great help if this could also be held somewhere centrally. More than a year ago the Minister said she would consider whether her Department might co-operate in this.