Prompted by the
threat of legal action by a charity, The Good Thinking Society (http://goodthinkingsociety.org/),
the Charity Commission is currently holding a review into the use and promotion
of complementary and alternative medicine (‘CAM’) by charities.
This is a
calculated action by a small group who have set themselves up as ‘acting for
the public benefit’ to attempt to get charitable status withdrawn from many of
the hundreds of charities which are providing a service outside the NHS, by offering
patients the opportunity of receiving CAM therapies to relieve their suffering
in some way. The drive of the action is to attempt to impose the flawed and
inappropriate Evidence Based Medicine (‘EBM’) model onto charity regulation, so
as to restrict charitable support of health to the same narrow mandate as our
National Health Service, which could reasonably be characterised as ‘corporate
medicine’. It’s important to note that these charities often obtain public
support precisely because they offer CAM therapies, and the patients who
receive the therapies have chosen them for themselves. Interested parties
were invited to submit material to the Charity Commission to assist it in
coming to a decision on whether to continue to allow that such charities are
acting in the public benefit.
Yes to Life chose
to contribute to the consultation process and the following responses have been
extracted from our submission:
What level and
nature of evidence should the Commission require to establish the beneficial
impact of CAM therapies?
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’.
How, if at all,
should the Commission’s approach be different in respect of CAM organisations
which only use or promote therapies which are complementary, rather than
alternative, to conventional treatments?
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.
Do you have any
other comments about the Commission’s approach to registering CAM organisations
as charities?
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.
References:
The re-purposing of old drugs for cancer is making headline news this year. So is this really ‘new’? Is it even ‘newsworthy’? Or is it simply yet another of those endless ‘cancer breakthrough’ stories so beloved of the media?
