Wednesday, 24 May 2017
CAM Charities Under the Gun? - by Robin Daly, Founder of Yes to Life
As CAM therapies are generally multi-modality, and are likely to have a strong psycho-social basis born out of the therapist-patient relationship as well as a biomedical one, evidence should not be limited to measurements of outcomes based on comparing treatments with controls in randomised controlled trials (‘RCTs’). We strongly feel that the route employed to establish the efficacy for pharmaceutical medicine is almost entirely unsuited to CAM.
There are several reasons for this, but the most prominent is that using the peer-reviewed literature will, in many or even most instances, lead to dismissing a therapy due to insufficient research of the type judged to be the ‘gold standard’ for pharmaceutical medicines. The key reason for a far lower level of research is profitability. The huge investment made in drug research is with a view to generating huge profits. The ‘bar’ for medical evidence is now set so high (and by this we are referring to cost, not quality) as to effectively rule out low-cost interventions of any type. Tragically, this fact is resulting in spiraling medical costs and lack of research into cheaper effective options.
The territory of CAM is a very different one to that of orthodox medicine, in that most CAM interventions are ‘natural’ ones, often based on foods, or they are ‘bodywork’ interventions such as massage, or work in the psychological/emotional arena. In contrast, practically all orthodox medicines are synthetic toxins and all have side-effects which are well documented. With orthodox medicines there is a fine balancing act between benefits and unwanted side effects. Hence it is critically important to ascertain that the balance is towards the beneficial side and that the side effects are not, in fact, worse than the condition being treated. Relatively speaking, CAM interventions are exceptionally safe and have few undesirable side effects. *When it comes to efficacy, the evidence for CAM interventions is undoubtedly ‘variable’. However, we feel this should not be the concern of the Charity Commission. In order to ensure that a given charity is providing benefit to the public and advancing health for the public benefit, it is sufficient for the Charity Commission to know that the public are not being put at risk by a charity providing a dangerous therapy. In our view, the beneficiaries are the only people qualified to judge whether a therapy is providing them with benefit - so it’s just a matter of asking them. A further role of the Commissioners is to ensure that money given to a charity is used for the purposes declared by the charity - ‘does what it says on the tin’. Hence if a charity advertises that it supports cancer patients with a type of complementary medicine and donations are received on that basis, then donors are particularly choosing to support the offering of such therapy to people with cancer because they have reason to believe it will be of benefit to them.
Evidence-based medicine (EBM), in the arena of CAM at least, is in many ways in direct conflict with a central policy of successive governments for the past 40 years or thereabouts - that of promoting patient choice and patient-centred care. EBM has had a stranglehold over choice to such a degree that it has required policy decisions such as the mandatory introduction of Personal Health Budgets(‘PHBs’) in the face of the resistance of the medical services, in order to even begin to introduce an element of patient choice, and some personal control over healthcare. Meanwhile, charities have been one of the very few channels through which choice has been introduced over this period.
We are very supportive of the work now being undertaken by Clinical Commissioning Groups and GP’s who are delivering PHB’s to their patients. Their use of patient experience is one of the key evaluation measures to determine outcomes. Patients frequently ask their doctor how their health might be improved by interventions that are not usually available on the NHS, and can be provided by charities. For example, acupuncture for pain relief. Whilst being positive on the efficacy of such interventions, GP’s have been limited in the past to offering NHS services. PHB’s have allowed a more flexible approach so that an individual personal care plan can be designed by the patient and the GP to best suit their needs. The NHS’s recently published ‘Five Year Forward View’ adopts a more patient-centred approach. Dismissing the use of patient experience as a means for evaluation would therefore be at odds with the government’s own policy.
It should also be noted that a substantial number of cancer centres now have a CAM unit offering patients a choice of CAM therapies to relieve the enormous stresses of cancer and of going through orthodox treatments. It is our understanding that in every case it has been a charitable initiative to introduce these choices and, without continued charitable input, these would quickly disappear. With EBM as the sole guiding principle, no such development would have occurred.
The consistently rising market for CAM is evidence enough of the public’s faith in its benefits. Despite our ‘free’ healthcare service, more and more people are putting their hands in their pockets in order to escape the paternalistic style of the NHS and its narrow views on what can be described as medicine. This situation is so desperate that Macmillan (a charity which now offers CAM) is running a campaign to elevate patient experience to the same level of importance as clinical outcome. This demonstrates how patients are being excluded from the picture. EBM can prescribe a course of treatment and then also judge the outcome by its own standards, without consulting the patient at any point, or in any way.
In summary, when dealing with CAM, we strongly believe that the term ’evidence of efficacy’ should be replaced with ‘no evidence of harm’.
Our major concern is for patient choice, and therefore we feel that a ‘hands off’ approach to choice of therapy, regardless of whether they might be described as ‘complementary’ or ‘alternative’ is essential. The same safety concerns should apply to both categories, but otherwise a limiting of choice when it comes to patients deciding what is best for their own healthcare is an infringement of their human rights.
It is worth noting:
a) There is no firm dividing line between complementary and alternative. A single therapy could be used in either way. Again this is a matter of patient choice.
b) CAM is very quickly being replaced as a ‘category’ of medicine. We talk about Integrative Medicine (IM), which does include all aspects of CAM, but also includes all aspects of conventional medicine. IM can be described as ‘the practice of medicine that reaffirms the importance of the relationship between practitioner and patient, focuses on the whole person, is informed by evidence, and makes use of all the appropriate therapeutic approaches, healthcare professionals and disciplines to achieve optimal health’.
c) The same limiting of choice described above also applies to charitable donors. If the Commissioners were to limit the range of complementary therapies that charities are allowed to offer, based on EBM principles, this also limits the rights of charitable donors to support safe non-conventional ways of helping people in the most difficult circumstances.
The Commission is providing an essential service to the public in registering CAM providers as charities. The example given above of CAM units attached to cancer centres, shows clearly the role of these charities in bringing choice to patients and in filling some of the enormous and well-documented gaps in care in our NHS. It should also be noted that generally practitioners operating within such organisations often provide their services free or at very low costs. Hospices are another excellent example of charities with a heavy reliance on CAM that are providing a level of care that is widely acknowledged to be unavailable within the NHS.
If the Commissioners decide to move under the same philosophical umbrella as our health services, then clearly charities will only be able to offer the same narrow choices prescribed by the EBM system, with all its well-documented shortcomings. In short, one of the key roles of our UK charities - that of addressing some of the gaps in care of the NHS - will be diminished unacceptably, and patients will effectively be taken back several decades in terms of the care they receive. As the UK is already languishing well down the European league tables for diseases such as cancer,** it is both irrational and inhuman to consider degrading our healthcare still further by preventing charities from broadening the services available to patients in an effort to improve their situations.
The entire foundation of charitable giving comes under question when an outside body, subject to forces beyond the control of the public, dictates what a donor is allowed to support and what a beneficiary is allowed to receive, based on a questionable and unsuitable system of ‘evidence’. The reasons for the shortcomings of EBM are now well-documented***, and we are all paying the price for the lack of choice and expensive, ineffective results it often produces. As explained above, CAM doesn’t even have the same requirement for such a system. Evidence is, of course, always welcome as a guide to effectiveness for patients and practitioners, but ‘no evidence of harm’ is really the only requirement that the Commissioners need be concerned with in order to establish that the therapy or therapies are beneficial. A non-patriarchal and democratic approach by the Commissioners will ensure that donors and beneficiaries are free to judge for themselves the benefits of safe therapies.