complementary, and alternative medicine: Signi cant issues. National Center for Complementary and Alternative Medicine. (2004) …
The NCI Office of Cancer Complementary and Alternative Medicine Invited Speaker Series
The State of CAM in UK Cancer Care: Advances in Research, Practice and Delivery
Dr Michelle Kohn, MB BS, BSc, MRCP UK Complementary Therapies Medical Advisor to Macmillan Cancer Relief, UK and the Department of Health, UK
The NCI Office of Cancer Complementary and Alternative Medicine Invited Speakers Series The State of Complementary and Alternative Medicine in United Kingdom Cancer Care: Advances in Research, Practice and Delivery
CONTENTS Preface3 Summary5 Slides9
Preface
The National Cancer Institutes Office of Cancer Complementary and Alternative Medicine OCCAM hosted Dr Michelle Kohn, MB BS, BSc, MRCP UK for the third in its Invited Speakers Series, on March 26, 2003 Dr Kohn is the Complementary Therapies Medical Advisor to MacMillan Cancer Relief, UK, and serves as Advisor to the Department of Health, UK Her presentation, The State of Complementary and Alternative Medicine in United
Kingdom Cancer Care: Advances in Research, Practice and Delivery, describes some of the historical development of complementary medical practices in the UK, the relationship between palliative and support care and complementary medicine, and the growing interest by cancer patients in the UK in these interventions and practices In addition, she describes UK organizations such as The National Cancer Research Institute, a collaborative body with representation from the Department of Health, Medical Research Council, Cancer Research UK, industry leaders, and several primary cancer research charities in the UK and their interest in complementary approaches She also presents information from commissioned reports, such as The 1998 Complementary Therapies in Cancer Care, which may be of interest to US researchers, practitioners and the public The video cast of Dr Kohns presentation is available through the OCCAM website at http://cancergov/cam This document is designed to provide a summary of
Dr Kohns presentation and provide the materials necessary to follow her presentation on the web cast By describing some of the latest work from the UK, we hope this presentation will stimulate similar activities in the US and abroad, encourage potential collaborative activities with our UK colleagues and continue to develop interest in cancer CAM research
Jeffrey D White, MD Director, Office of Cancer Complementary and Alternative Medicine National Cancer Institute
Wendy B Smith, MA, PhD Program Director, Research Development and Support Program Office of Cancer Complementary and Alternative Medicine National Cancer Institute
The State of CAM in UK Cancer Care: Advances in Research, Practice, and Delivery
Dr Michelle Kohn, MB BS, BSc, MRCP UK Complementary Therapies Medical Advisor to Macmillan Cancer Relief, UK and the Department of Health, UK Summary The United Kingdom did not acknowledge the practice of alternative medicine until 1858, with the advent of orthodox medicine and
the passing of the Medical Registration Act Prior to 1858, medicine was largely a free for all, characterized by open markets of herbalists, midwives, and healers, competing for custom with physicians, surgeons, and apothecaries In the early 20th century, newly enacted legislation limited the claims that non-medically qualified practitioners could make, precipitating a sharp drop in the number of alternative practitioners, who operated without a regulating body In the 1960s, the United Kingdom witnessed a resurgence in the practice of alternative medicine; primarily fuelled by consumers desire for greater control over their own well-being, and the perception that orthodox biomedicine was limited in terms of safety and efficacy The orthodox biomedical communitys response to the resurgence was initially negative For instance, a 1986 British Medical Association BMA report associated alternative approaches to healthcare with witchcraft, and described alternative healthcare as a passing fad
By the 1990s, the orthodox medical response grew more positive, exemplified by a 1993 BMA report, which coined the term complementary, and recommended training in complementary therapies for doctors and other healthcare professionals This served as a catalyst for the public to relinquish the perception of complementary and alternative care as unconventional In 1997, the Foundation for Integrated Medicine published a report on integrated healthcare, a move that challenged the previous biomedical model of healthcare and held the promise of a more unified package of care The House of Lords Select Committee report 2000 followed US protocol and adopted the term Complementary and Alternative Medicine CAM, which represented a further shift in healthcare terminology and medical culture This report also provided a classification system, which grouped therapies according to their professional regulation affiliation and evidence base The recommendations put forth by the House of Lords Select
Committee report were not met with blanket acceptance; cancer care providers were resistant to the shift in terminology and ideology Orthodox cancer care practitioners commonly accept complementary use ie alongside orthodox medical treatment, as opposed to alternative use ie in place of conventional treatment of non-orthodox medical treatments Consequently, the term CAM is used in the research literature in the UK, but there are calls for greater clarification of terminology in both practical and research settings Lessons learned from the evolution of the palliative care movement are highly applicable to the embryonic field of complementary medicine The 1950s were marked by great human suffering and pain, and antiquated methods of care There were significant breakthroughs in technology and specific treatments for disease; however, much suffering remained unaddressed In 1964, the concept of total pain was
introduced, a concept that addressed not only the physical symptoms of a disease
but associated mental distress and social and spiritual problems as well Dame Cicely Saunders was a chief advocate for providing total care, and was primarily responsible for revolutionizing the hospice movement and pioneering the introduction of palliative care practices In the post-war era, she intensively studied orthodox medicine and accumulated a wealth of research on pain and healthcare Dame Cicely created a methodology, which consisted of listening, recording, and analyzing patient experiences to attain the goal of living until you die, and almost single-handedly transformed the concept of the hospice into one of a charitable organization with a broad spiritual foundation In subsequent years, she credited the success of the hospice and the palliative care movements to the introduction of new methods to assess quality of life and spiritual and existential distress, combined with continued efforts to ensure academic validity in patient care and research By the 1980s, palliative
care practice evolved into a fusion of technological intervention and a humanist approach to healthcare The value patients place on complementary approaches to attain total care was exemplified in the Complementary Therapies in Cancer Care CTCC report1 The CTCC report also highlighted the increasingly supportive attitudes of healthcare professionals to complementary practices Surveys of health professionals revealed that the majority of those interviewed regularly volunteered information on complementary approaches and were keen to learn more The report suggested that patients were pulled towards complementary medicine by various factors, most notably because it provided them with touch, time, and talk The CTCC report demonstrated that supportive care was emerging as an integral element of the cancer treatment continuum; a trend further validated by surveys indicating that as many as one third of women with breast cancer sought out complementary resources In spite of increased support
and use of complementary healthcare, fiscal pressures in the socialized health service confounded physicians perceptions of the need for complementary practices Issues surrounding evidence, training, regulation, ethics, confidentiality, and research in a clinical setting also contributed to stagnation in the expansion of complementary healthcare promotion by physicians To respond to the public and professional demand for further information on local resources, Macmillan Cancer Relief published the Directory of Complementary Therapy Services in UK Cancer Care2 in 2002, listing complementary services available throughout the UK Services in the Directory offered over forty types of complementary healthcare therapies A full one third of the services offered complementary therapies in hospitals, another one-third in hospices, and one-fifth offered services in the voluntary sector Touch therapies and mind-body therapies were the most common therapies listed in the Directory Over 90 of the
services in the Directory offered touch therapies, such as aromatherapy, massage, and reflexology, while mind-body therapies, like relaxation and visualization, were offered through over 80 of services Healing and energy work,
Complementary Therapies in Cancer Care Abridged report of a study produced for Macmillan Cancer Relief, June 1999 Dr Michelle Kohn author Published by Macmillan Cancer Relief UK Directory of Complementary Therapy Services in UK Cancer Care, 2002 Published by Macmillan Cancer Relief UK
2 1
including reiki, spiritual healing and therapeutic touch, were available in over 40 of services Creative therapies, such as art therapy, were also available through over 40 of the services, while over 20 of the services offered nutritional and medicinal therapies Services listed in the Directory frequently provided complementary therapy services to orthodox healthcare providers and staff, as well as patients Encouragingly, 70 of services provided therapeutic work free of
charge to patients, orthodox healthcare providers, and staff Increased use and acceptance of complementary therapy practices and research inspired a restructuring of orthodox treatment methods for cancer The 2000 National Cancer Plan NCP defined cancer treatment as a three-part system comprising diagnosis, treatment, and newly established Supportive Care practices As a whole, complementary therapies were designated as one of eleven elements in the new supportive care model; the NCP guide will be published in 2004 In 2001, the Prince of Waless Foundation for Integrated Health and the National Council for Hospice and Specialist Palliative Care Services began a collaborative effort to establish National Guidelines for the Use of Complementary Therapies in Supportive and Palliative Care3 The Guidelines are designed to enable healthcare providers and employees to set up and maintain services The Guidelines address issues such as recruitment, configuration of teams, supervision, ethics, and
accountability, in addition to appraisals of the most commonly used therapies and clinical considerations Following the House of Lords Select Committee report 2000, the government pledged to fund research into designated priority areas to better understand CAM use In 2002, the National Health Service Research and Development Programme commissioned work to examine CAM use in patients with cancer The Programme specifically called for exploration of CAM patient populations, stages of illness from diagnosis through to palliative and terminal care, impetus for use, perceived benefits of use, and comparisons with orthodox care The National Cancer Research Institute NCRI was established to allow for proficient strategic planning relating to cancer research NCRI is a collaborative body comprised of the main funding supporters of cancer research, including the Department of Health, the Medical Research Council, Cancer Research UK, industry leaders, and several primary cancer charities, and was
based on a model developed in collaboration with colleagues in the United States Common scientific method allows for comparisons to be drawn on the types of research being conducted CAM research guided by NCRI fits into three main categories: 1 prevention, 2 treatment, 3 control, survival, and outcomes At present, government spending in the areas most applicable to CAM, those of cancer control, survival and outcomes, and cancer prevention, remains low Research activity in the UK is currently focused on complementary rather than alternative approaches, mind-body interventions and touch techniques in particular Several researchers are developing the evidence base in these areas, collaborating with orthodox and complementary practitioners, to better understand the role and value of these
National guidelines for the Use of Complementary Therapies in Supportive and Palliative Care, 2003 Published by the Prince of Waless Foundation for Integrated Health and the National Council for Hospice
and Specialist Palliative Care Services
3
practices and design trials accordingly Although there has been limited activity to date, this is more a reflection of the lack of CAM researchers, infrastructure, and funding than a lack of interest in the field Factors contributing to funding apprehension arise from a lack of effort to validate efficacy, a failure to focus on specific research questions, a lack of clarity in research goals, and insufficient understanding of how complementary mechanisms work Researchers must first focus on therapeutic relationships and develop methodological tools to accurately and appropriately measure holistic practices The future success of CAM research is contingent on patient-centered research Including people affected with cancer in CAM research, improving the evidence base, developing better methodological tools, and concentrating on areas of most concern to patients, will foster increased use of CAM practices, as well as improve orthodox care How
society integrates the interplay of technological advances, the delivery of services, and the financing of healthcare will dictate how complementary therapies can assist individuals along their cancer journey
Solomon Islands, South Pacific
The State of CAM in UK Cancer Care: Advances in Research, Practice and Delivery
10 9 11 13
Dr Michelle Kohn MB BS, BSc, MRCP UK
March 26th 2003
Collecting medicinal herbs
12
Professor Tony Dickenson and team, University College London
Detail from a 13th Century German manuscript PseudoMusa, De herba vettonica
A hydrotherapy cure
14
King George III taking the waters at Cheltenham, 1812
Gräfenberg, Germany Lithograph, c 1860
11
Professor Mike Saks Pro Vice Chancellor, University of Lincoln
A woman patient at a spa is told by her doctor that the treatment for her fertility might be helped by the presence of a diverting friend
15 17 19
16
Orthodox and Alternative Medicine Politics, Professionalization and Health Care
Lithograph by M
Stephane, c 1896
Shift in Attitudes
1986 BMA Report passing fad 1993 BMA Report Complementary medicine
The Past
18
1997 Foundation for Integrated Medicine - Integrated healthcare 2000 House of Lords Select Committee Report on CAM 2001 BMJ Integrated medicine coincided with conference at Royal College of Physicians
House of Lords Classification Table
Foundation for Integrated Medicine
Integrated Healthcare: A way forward for the next five years A discussion document, 1997
Table 111 Complementary and Alternative Medicine Disciplines as grouped by the House of Lords Science and Technology Select Committee 6th Report into Complementary and Alternative Therapies November 2000 Group 1 Professionally organised alternative therapies
Acupuncture Chiropractic Herbal medicine includes Essiac Homoeopathy Osteopathy 20
Group 2 Complementary therapies
Alexander Technique Aromatherapy Bach and other flower remedies Bodywork therapies including massage Counselling stress therapy
Hypnotherapy Meditation Reflexology Shiatsu Healing Marharishi Ayurvedic Medicine Nutritional Medicine Yoga
Group 3 Alternative disciplines
3a: Long established traditional systems of health care Anthroposophical medicine includes Iscador Ayurvedic medicine Chinese Herbal Medicine Eastern Medicine Naturopathy Traditional Chinese Medicine 3b: Other alternative disciplines Crystal therapy Dowsing Iridology Kinesiology Radionics
National Charity est 1996 by The Prince of Wales Research and development Education and training Regulation Delivery mechanisms
Re-branded as Prince of Waless Foundation for Integrated Health, 2002
21
CAM Use
Integrated medicine of today should be the medicine of the new millennium
21 22
Recent surveys Rees et al, 2000 1,023 women with breast cancer, 315 had consulted a CAM practitioner since diagnosis Lewith et al, 2002 32 of those with cancer were receiving CAM, 49 not receiving CAM would have liked to
BMJ 20 January 2001, Issue 7279
Cancer Care
in the UK: A historical perspective
23 24
The evolution of palliative care
Etching showing a couple visiting the sick in a hospice where the man attempts to feed one some nourishment
Dame Cicely Saunders OM
The past
Palliative Active Treatment Care
25
26
The present
Active Treatment Palliative Care
The evolution of palliative care Journal of the Royal Society of Medicine, Volume 94 September 2001
31
Macmillan Cancer Relief Macmillan Cancer Relief
A national cancer care charity founded in 1911 I want to see homes for cancer patients throughout the land, where attention will be provided freely or at low cost, as circumstances dictate I want also to see panels of voluntary nurses, who can be detailed off to attend to necessitous patients in their own homes Douglas Macmillan, 1931 Vision statement
27 29 31
28
Imagine a time when every person in the land has equal and ready access to the best information, treatment and care for cancer and unnecessary levels of fear are set
aside
Macmillan Cancer Relief
Macmillan Cancer Relief
A voice for life; changing perceptions
A voice for life; changing perceptions battle fight struggle struck down suffering victim stricken anguish
30
We always seem to hear the horror stories But I know what a difference it makes if youre given hope A patients view
Macmillan Cancer Relief
Macmillan Cancer Relief
A voice for life; changing perceptions Oxford English Dictionary - definition
32
A voice for life; changing perceptions Oxford English Dictionary - definition Cancer : a malignant growth or tumour in different parts of the body, that tends to spread indefinitely and to reproduce itself, also to return after removal; it eats away or corrodes the part in which it is situated, and generally ends in death As defined in 1888
Cancer : a malignant tumour or growth of body tissue that tends to spread and may recur if removed As defined in 1999
41
Complementary Therapies in Cancer Care
Nurses comments on
therapies
Therapy Aromatherapy Reflexology Massage Psychological interventions eg relaxation Healing Acupuncture Homoeopathy Comments Yes please Nice, safe, probably nonsense Very relaxing Patients can do something for themselves Its a bit over the top It seems to help with pain It interferes with medical treatment It lacks plausibility
33
34
Complementary Therapies in Cancer Care
Nursing practice survey conclusions Most nurses 97 are asked about complementary therapies
Complementary Therapies in Cancer Care
Doctors comments on therapies
Therapy Comments The patient gets extra time with someone who can listen Im happy for patients to try anything Great for muscle spasm I offer hypnotherapy its been very worthwhile Im sceptical, but if it helps, fine I practise it it helps localised pain I find the concept difficult to believe in, but I dont mind patients trying it
Most 94 volunteer information at some time
35 36
Aromatherapy Reflexology Massage Psychological interventions eg
relaxation Healing Acupuncture Homoeopathy
30 have taken courses in complementary therapies 15 practise complementary therapies Most would welcome information/education about complementary therapies 92 and information on local therapists and resources 94
Complementary Therapies in Cancer Care
Medical practice survey comments
GPs have increasingly become maligned for their communication skills Its just that we dont have time time permitting, perhaps complementary therapies would not be needed GP, Birmingham
38
Complementary Therapies in Cancer Care
Medical practice survey conclusions
Most physicians, 96 are asked about complementary therapies Most, 92 volunteer information at some time Therapies most widely offered are aromatherapy, reflexology, massage, and acupuncture 36 have taken courses in complementary therapies 20 practise complementary therapies Most would welcome information/education about complementary therapies 76 and information on local therapists and
resources 84
37
Evidence is Needed Palliative care physician, Nottingham
It keeps patients out of the surgery GP, Avon If it helps the patient, we should support it But we must not mislead patients GP, Plymouth
51
Complementary Therapies in Cancer Care
Barriers to integration
1 The role in cancer care
39 40
2 The dialogue or lack of 3 The appropriate research
Complementary Therapies in Cancer Care
Complementary Therapies in Cancer Care
Orthodox medicine push factors Failure to produce curative treatments Adverse effects of orthodox medicine Lack of time with practitioner, loss of bedside skills Dissatisfaction with the technical approach Fragmentation of care due to specialisation
Complementary therapies pull factors Media reports of dramatic improvements Belief that these therapies are natural Empowerment of patient Focus on spiritual and emotional well-being Provisions of touch, talk and time
41 43
42
Complementary Therapies in Cancer Care
Rationing
and prioritisation of services We cant pump money into massaging patients when we havent got the money to cut their tumours out Cancer surgeon How much of our resources are we prepared to put into complementary medicine compared to cancer treatments such as chemotherapy? Consultant oncologist
Complementary Therapies in Cancer Care
Rationing and prioritisation of services Maybe oncologists would reconsider giving last-ditch chemotherapy to desperately sick patients if they had something else to offer It may save money from the drug budget
44
Palliative care physician Educated middle-class women mainly use complementary therapies Such people can often afford private care Often they are the worried well Consultant oncologist
61
Complementary Therapies in Cancer Care
Rationing and prioritisation of services
Complementary Therapies in Cancer Care
Issues surrounding use Evidence Whats the evidence that being rubbed down with lavender oil is better than a day trip to France, a shampoo
and set, or giving patients gift vouchers? Cancer surgeon Training Doctors need training to have the knowledge and confidence to discuss complementary therapies with their patients Physician
The complementary therapy scheme is an essential part of the comprehensive care that should be available to all cancer patients
45 47 49
46
Consultant radiotherapist
Complementary Therapies in Cancer Care
Issues surrounding use
Complementary Therapies in Cancer Care
Future directions
Training With all the new degree courses, there will be an increase in clinical practice but do the therapists have the clinical skills? Policy maker Regulation My aromatherapist thinks it will inspire confidence if she tells me of her famous patients who come for treatments Patient
Research Regulation Education training Information Collaboration
48 50
71
I believe this directory will be of great value both to cancer patients and health professionals Professor Mike Richards National Cancer
Director Complementary therapy really can make a difference to the experience of cancer In fact it should now be an integral part of any cancer treatment service Professor Malcolm McIllmurray Macmillan Consultant in Medical Oncology Royal Lancaster Infirmary A very timely and worthwhile innovation by Macmillan to bring together this directory of complementary therapy services for people effected by cancer I am certain it will prove to be an invaluable resource Professor Jessica Corner Professor in Cancer and Palliative Care School of Nursing and Midwifery, University of Southampton
51
52
Directory of Complementary Therapy Services in UK Cancer Care Data set of 320
of centres Hospice Hospital
53
Directory of Complementary Therapy Services in UK Cancer Care
Touch and Manipulative Touch and manipulative Therapies therapies
number of centres 119 103
54
36 31 18
Mind-body therapies Mind/Body Therapies Healing Energy work Healing andand energy work
Creative Therapies Creative
therapies Medicial and Nutritional Medicinal and Therapies nutritional therapies Movement Therapies Movement therapies
Voluntary organisation/group Community Other/not specified
59
9 5
31
Other therapies Others
18
0
10
20
30
40
50
60
70
80
90
100
of centres that provide CT of centres that provide CT
Table 1: Setting for complementary therapy centre
Figure 1: Percentage of centres who provide selected complementary therapies
Directory of Complementary Therapy Services in UK Cancer Care
Figure 2: Percentage of centreswho provide Mind/B Therapies ody R elaxation
Aromotherapy
Directory of Complementary Therapy Services in UK Cancer Care
Figure 3: Percentage of centreswho provide Touch and Manipulative Therapies
C ounselling Visualisation Meditation H yponotherapy/H ypnosis
55 56
M assage Reflexology Acupuncture Shiatsu Indian Head and NeckM assage Osteopathy Cranio-SacralTherapy Chiropractic Biodynamic M assage ThaiM assage ChairM assage Bowen Technique
N
euro-Linguistic Program ming Autogenic training C olour T herapy D ream T herapy Psychotherapy 00 100 200 300 400 500 600 700 800 900 1000
00
100
200
300
400
500
600
700
800
900
1000
of of centres that provide CT centres that provide CT
of of centres that provide CT CT centres that provide
Figure 2: Percentage of centres who provide mind-body therapies
Figure 3: Percentage of centres who provide touch and manipulative therapies
81
Figure 4: Percentage of centres who provide Healing and Energy Work
Directory of Complementary Therapy Services in UK Cancer Care
F u 4 P rc n g o c n sw op v eHa ga dEe yWrk ig re : e e ta e f e tre h ro id e lin n n rg o
Directory of Complementary Therapy Services in UK Cancer Care
F u 5P ig re : ercen e o c tresw op v e M v en T erap tag f en h ro id o em t h ies Yg oa Yoga
Riki Reikie Siritu l p Spiritual Healing a
57 58
A xa d r T ch iq le n e e n ue Alexander Technique T Ci a h Taii Chi
Dance Therapy D n T e py a ce h ra Chii
Kung C K ng hu
Te pTouch h h ra u u Therapeutic e ticto c CTherapyy l h ra Crystalrysta Te p 0 0 1 0 2 0 3 0 4 0 5 0 6 0 7 0 8 0 9 0 1 0 0 0 0 0 0 0 0 0 0 0 0 fc that provide T o n s a roid CT of centrese tre th t p v eC
0 0
1 0 0
2 0 0
3 0 0
4 0 0
5 0 0
6 0 0
7 0 8 0 00
9 0 1 00 0 0
o ce tre th p v eC f n s a ro id T of centres thattprovide CT
Figure 4: Percentage of centres who provide healing and energy work
Figure 5: Percentage of centres who provide movement therapies
Directory of Complementary Therapy Services in UK Cancer Care
Directory of Complementary Therapy Services in UK Cancer Care
Rate per 100,000 cancer patients diagnosed each year 300 250 200 150 100 50 0 Wales Scotland Northern Ireland England
UK upper range Rate per 100,000 cancer patients diagnosed per year UK lower range
Art Art M usic Music
Touch and Manipulative Therapies
Medicinal and Medicial
Mind/Body Therapies
Healing and Energy work
Movement Therapies
Creative Therapies
9 10 11
12
12
Table 2: Range of therapies offered by centres in the UK
Figure 8: Number of centres offering various complementary therapies to cancer patients, their carers and staff
Nutritional Therapies
O ther therapies
59 61
60
Dramaa D ram
0 10 20 30 40 50 60 70 80 90 1 00
f vide T ofo centres tha pro C CT centres thatt provide
Figure 6: Percentage of centres who provide creative therapies
Figure 7: Rate of complementary therapy centres per 100,000 cancer patients diagnosed each year by region of the UK
Directory of Complementary Therapy Services in UK Cancer Care Number of therapies
1 2 34 56 78
Directory of Complementary Therapy Services in UK Cancer Care
Number of centres
350 300 250 200 150 100 50 0
Percent
10 22 24 20
62
Cancer patients Carers Staff
91
Complementary Therapies in Cancer Care
Complementary Therapies in Cancer Care
Summary points:
Summary points ctd
90 of centres offer a touch and manipulative therapy 80 of centres offer aromatherapy, making it the
most widely available therapy 80 provide at least one mind-body therapy 40 complementary therapies offered across the UK but one third are only available in 1 of centres
70 of centres have no charges for any
64
63 65 67
complementary therapies to patients, carers and staff 80 of centres offer services to carers 50 of centres offer at least one complementary therapy to staff
The National Cancer Plan 2000
The concept of supportive care
The Present
Introduced in the NHS Cancer Plan 2000 Acknowledged that supportive care should be provided throughout the patients and carers cancer journeys Positive concept Includes complementary therapies as one of 12 services to empower patients and their carers to develop strategies for living with cancer, and support them in the process
66
The Definition of Supportive Care
Supportive care is that which helps the patient and their family to cope with cancer and treatment of it from prediagnosis, through the process of diagnosis and
treatment, to cure, continuing illness or death and into bereavement It helps the patient to maximise the benefits of treatment and to live as well as possible with the effects of the disease It is given equal priority alongside diagnosis and treatment Developed by the National Council for Hospice and Specialist Palliative Care Services NCHSPCS 2002
The Definition of Palliative Care
Palliative care is the active holistic care of patients with advanced, progressive illness Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount The goal of palliative care is achievement of the best quality of life for patients and their families Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatment NCHSPCS 2002
68
101
The Principles of Palliative Care
Palliative care aims to:
Department of Health Delivering the NHS Cancer Plan Supportive and Palliative Care
Strategy
Guidance on improving supportive and palliative care for adults with cancer Information Communication Symptom control Specialist palliative care Terminal care Rehabilitation Psychological support Spiritual support Social support Complementary therapies User involvement Support for carers including bereavement
70
Affirm life and regard dying as a natural process Provide relief from pain and other symptoms Integrate the psychological and spiritual aspects of patient care Offer a support system to help patients live as actively as possible until death Offer a support system to help the family cope during the patients illness and in their own bereavement NCHSPCS 2002
69 71 73
Initiated by the DoH developed under the auspices of NICE
Guidelines for the use of Complementary Therapies in Supportive and Palliative Care
Guidelines for the use of Complementary Therapies in Supportive and Palliative Care
What will the guidelines cover?
The Prince of Waless
Foundation for Integrated Health The initial development of a service Management and on-going development Configuration of teams/services some examples Recruitment Volunteers Ethics and accountability
72
National Council for Hospice and Specialist Palliative Care Services NCHSPCS The scope of the guidelines Who are the guidelines for? Employers and/or providers of services
Guidelines for the use of Complementary Therapies in Supportive and Palliative Care
What will the guidelines cover? cont Supervision Most commonly used therapies: massage, acupuncture, aromatherapy, reflexology, healing, homeopathy and hypnotherapy Clinical issues: cancer, motor neurone disease, Parkinsons disease, multiple sclerosis Clinical governance Other sources of information
Research
74
111
In science you dont need to be polite, you only have to be right
75 76
we are witnessing today — a revolution in medical science whose implications far surpass even the discovery of antibiotics, the
first great technological triumph of the 21st century And every so often in the history of human endeavour there comes a breakthrough that takes humankind across a frontier and into a new era Tony Blair
Remarks on the completion of the first survey of the entire human genome project, June 26th 2000
Winston Churchill
Todays announcement represents more than just an epicmaking triumph of science and reason After all, when Galileo discovered he could use the tools of mathematics and mechanics to understand the motion of celestial bodies, he felt, in the words of one eminent researcher, that he had learned the language in which God created the universe
77 79 78
Sir Alexander Fleming at work in his laboratory at St Marys Hospital, London
Today, we are learning the language in which God created life We are gaining ever more awe for the complexity, the beauty, the wonder of Gods most divine and sacred gift Bill Clinton
Remarks from the US President on the completion of the first survey
of the entire human genome project, June 26th 2000
Periodical, Britain Today 1942
Research Capacity
80
121
An analysis of cancer research funding in the UK NCRI members
NCRI member
Association for International Cancer Research AICR
Biotechnology and Biological Sciences Research Council BBSRC
Funding agency
Charity Government Charity Charity Government Charity Charity Charity Charity Government Government Government Charity Government Charity
Website
wwwaicrorguk wwwbbscracuk wwwbreakthroughorguk wwwcancerresearchukorg wwwdohgovuk wwwdialpipexcom/lrf wwwludwiguclacuk wwwmacmillanorguk wwwmariecurieorguk wwwmrcacuk wwwrdocsan-inhsuk/rdo/ indexhtml wwwshowscotnhsuk/cso wwwtenovuscom dspacedialpipexcom/word wwwycrorguk
Breakthrough Breast Cancer Cancer Research UK Dept of Health Leukaemia Research Fund Ludwig Institute for Cancer Research Macmillan Cancer Relief Marie Curie Cancer Care Medical Research Council MRC Northern Ireland HPSS RD Scottish Executive Health Dept Tenovus
Wales Office of RD Yorkshire Cancer Research 81 82
An analysis of cancer research funding in the UK
The Common Scientific Outline CS0 groups research into 7 broad areas:
An analysis of cancer research funding in the UK
Prevention 35 Complementary and alternative prevention approaches Examples of science that would fit: Discovery, development and testing of complementary/alternative prevention approaches such as diet, herbs, supplements or other interventions which are not widely used in conventional medicine or are being applied in different ways as compared to conventional medical uses Hypnotherapy, relaxation, transcendental meditation, imagery, spiritual healing, massage, biofeedback, etc used as a preventive measure
84
Biology Aetiology Prevention Early detection, diagnosis and prognosis Treatment Cancer control, survival and outcomes research
83 85
Scientific model systems These areas are in turn, further subdivided to give a total of 38 individual CSO categories
An
analysis of cancer research funding in the UK
Treatment 56 Complementary and alternative treatment approaches Examples of science that would fit: Discovery, development and clinical application of complementary/alternative treatment approaches such as diet, herbs, supplements, natural substances or other interventions which are not widely used in conventional medicine or are being applied in different ways as compared to conventional medical uses
86
An analysis of cancer research funding in the UK
Cancer control, survival and outcomes research 68 Complementary and alternative approaches for supportive care of patients and survivors Examples of science that would fit: Hypnotherapy, relaxation, transcendental meditation, imagery, spiritual healing, massage, biofeedback, etc, as used for the supportive care of patients and survivors Discovery, development and testing of complementary/alternative approaches such as diet, herbs, supplements or other interventions that are not widely
used in conventional medicine or are being applied in different ways as compared to conventional medical uses
131
An analysis of cancer research funding in the UK
Types of research being conducted Analysis of the Cancer Research Database CRD by CSO has provided information on the balance between different types of research in the collective UK portfolio as follows [see figure 1]:
87 88
Nature Reviews Cancer 3: An analysis of cancer research funding in the UK
Biology Treatment Aetiology Early detection, diagnosis and prognosis Cancer control, survival and outcomes Scientific model systems Prevention
41 22 16 8 6 5 2
Figure 1 | Proportion of total NCRI partners spend by CSO
An analysis of cancer research funding in the UK
Some reasons given to explain differing levels of spend within the combined research portfolio are as follows: Biology
89 90
An analysis of cancer research funding in the UK
Treatment Co-ordination and networking particularly beneficial NCRI partners are
working together to ensure development of coherent national approach to clinical cancer research National networks for clinical trials have been reorganised through NCRI action NCRI action has also brought about provision of new government investment in research infrastructure within the NHS
The UK has an excellent reputation for high-quality biological research relevant to cancer This research area is fundamental to better understanding of cancer, necessary for the development of improved, rationally based treatment and prevention strategies
An analysis of cancer research funding in the UK
Cancer control, survival and outcomes research
An analysis of cancer research funding in the UK
Prevention Spend on research aimed at direct application of interventions designed to prevent cancer is low
92
Much of the research is aimed at understanding and improving those factors that affect a patients experience of cancer Type of research is probably less expensive than some other
fields of research Spend is low in this area
91
Other elements of prevention research like identification of suitable targets and preventive interventions and investigation of factors that cause cancer are well supported across several CSO categories
141
An analysis of cancer research funding in the UK
Nature Reviews Cancer 3 : An analysis of cancer research funding in the UK
Most NCRI partners predominantly fund biology, aetiology and treatment research Few focus their research activities on prevention and cancer control with the exception of Macmillan Cancer Relief, which is active only in the area of cancer control, survival and outcomes research
93 95 97
94
[The percentage of NCRI member spend by CSO is shown in figure 2]
Figure 2 | Percentage of each NCRI members spend by CSO
An analysis of cancer research funding in the UK
Disease site funding analysis 40 of the NCRI partners spend is disease specific This is compared with incidence and mortality figures
96
An
analysis of cancer research funding in the UK
There are some cancers where the relative funding is higher than the pattern of disease burden eg leukaemia, ovarian, cervical There are some where spend is significantly lower eg lung, pancreas, stomach, oesophagus and bladder
The key observations are: The relative proportion of funding of different tumour sites generally follows the increasing disease burden associated with those tumours eg breast, colon, rectal and prostate
OToole L, Nurse P and Radda G An analysis of cancer research funding in the UK Nature Reviews / Cancer February 2003, Volume 3
Cancer Research UK
Cancer Research UK
Examples of CAM research within the CR-UK portfolio Professor Leslie Walker, Institute of Rehabilitation, University of Hull School of Medicine
98
Examples of CAM research within the CR-UK portfolio Deborah Fenlon, University of Southampton, School of Nursing and Midwifery The use of relaxation therapy as an intervention for hot flushes in women
with breast cancer
A randomised controlled study of the relative psychoneuroimmunological effects of relaxation therapy and guided imagery, alone and in combination, in patients with colorectal cancer
151
Cancer Research UK
Cancer Research UK
Examples of CAM research within the CR-UK portfolio Professor Ken Fox, Department of Exercise and Health Sciences, University of Bristol Centre for Sport, Exercise Health Studentship: The role of exercise in the enhancement of quality of life and mental well-being of recovering cancer patients in the UK
Examples of CAM research within the CR-UK portfolio Professor Stephen Morley, Academic Unit of Psychiatry and Behavioural Sciences, University of Leeds School of Medicine Attention management as an adjunctive treatment for cancer pain
100
99 101 103
Cancer Research UK
Examples of CAM research within the CR-UK portfolio Dr Amanda Daley, Sheffield Hallam University
NHS Research Development Programme
Commissioning Brief
Research on the
Role of Complementary and Alternative Medicine CAM in the Care of Patients with Cancer
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Effects of exercise therapy upon quality of life in women who have had breast cancer
NHS Research Development Programme Commissioning Brief
NHS Research Development Programme Commissioning Brief
Following the House of Lords Select Committee report on CAM: The budget available is up to 300,000 Research into the CAM genre itself, including social research into the motivation of those patients seeking CAM and the usage patterns of CAM The focus is on: CAM therapies as an adjunct to conventional forms of treatment and in palliative/supportive care
104
The outputs will help to inform both the provision of integrated services within the NHS and the future research agenda for CAM in the cancer field
161
NHS Research Development Programme Commissioning Brief
Research questions Proposals should address some or all of the following areas of interest: How are perceptions of CAM treatments
influenced by personal background, sources of information, the nature and stage of the disease, the orthodox treatment received or proposed, and professionals views? How are preferences for or against CAM treatments determined? What are patients expectations of cancer care and how far and in what ways are these met by CAM therapies? Do these expectations change at successive stages of illness?
NHS Research Development Programme Commissioning Brief
Research questions
What aspects of different CAM treatments and of the therapeutic relationship are particularly valued, and how are these compared with the experience of orthodox treatments? In what way do patients interactions with orthodox and CAM practitioners differ? Are there measurable effects on quality of life among those receiving CAM treatments?
105 107 109
106
NHS Research Development Programme Commissioning Brief
Patient groups Groups of interest include the following: Patients receiving potentially curative treatment
which might be surgery, radiotherapy and/or chemotherapy Patients who have received potentially curative treatment and are now clinically free of disease Patients with metastatic disease who are receiving or have been recommended orthodox anti-cancer treatment Patients with advanced disease who are receiving or are candidates for palliative care
108
NHS Research Development Programme Commissioning Brief
Research methods Proposals should be supported by systematic review of the relevant literature Researchers may propose the study designs which are considered most informative in addressing the questions set out above but should include a strong qualitative component Applicants are asked to justify their proposed study methods and sampling strategy The research team will be multidisciplinary and likely to have representation from social sciences, CAM, cancer specialties, health services research and patients
NHS Research Development Programme Commissioning Brief
Grants Awarded
December 2002 1 Dr Philip Tovey Principal Research Fellow, School of Healthcare Studies, University of Leeds Professor Jessica Corner Professor in Cancer and Palliative care, School of Nursing and Midwifery, University of Southampton Dr Alison Shaw Non Clinical Lecturer Division of Primary Healthcare, University of Bristol
Marie Curie and CAM
The Marie Curie Palliative Care Research and Development Unit seeks to improve care for those affected by life-limiting illnesses Encourages carries out research into a broad spectrum of issues relating to palliative care Its work includes investigations into a wide range of subjects and issues, including aromatherapy massage, constipation in cancer patients and communication skills for healthcare professionals The unit is based at the Royal Free and UCL Medical School, London, headed by Dr Susie Wilkinson
110
2
3
171
Professor Leslie Walker The Institute of Rehabilitation The University of Hull
Professor Leslie Walker The Institute
of Rehabilitation, The University of Hull
Research The research strategy is to collaborate with clinicians and basic scientists Funded by the Medical Research Council, Cancer Research UK, the HTA Programme and the NHS RD Executive, current studies includes: Psychoneuroimmunological studies Psychosocial aspects of cancer screening The evaluation of different models of providing psychosocial care The evaluation of the effects of complementary interventions on quality of life
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112
Professor Leslie Walker The Institute of Rehabilitation, The University of Hull
Current clinical trials: A randomised, controlled, clinical trial of the effects of reflexology on quality of life including mood, adjustment, function, coping and patient satisfaction in women with early breast cancer 180 patients: 3 years commencing May 2002 A randomised, controlled trial of the relative effects of relaxation therapy and guided imagery, alone and in combination, on host defences, mood, adjustment,
quality of life and patient satisfaction in patients with colorectal cancer 180 patients: 3 years commencing January 2003 A randomised, controlled trial of reflexology versus relaxation therapy and guided imagery on host defences, mood, adjustment, quality of life and patient satisfaction in patients with advanced lung cancer 180 patients: 3 years commencing April 2003
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114
Dr Jane Maher Mount Vernon Cancer Centre, University College London
Dr Jane Maher
A common sense approach?
Dr Jane Maher
A common sense approach?
1 Reviewed which CAMs used
115 116
5 Measurement tools 6 Focus group end of pilot 7 Published regular reports 8 Co investigators Cancer Research UK randomised controlled trial
2 Identified, screened trained cohort of therapists 3 Introduced therapies one by one: context of care package 4 Focus on shared language
181
Mount Vernon Cancer Centre
What are the priorities? Data base 30,000
Psycho
117 119 121 118
Develop an evidence base for new safe
medicine Develop information for patients professionals about CAMs Improve orthodox care through learning from CAMs
Touch / talk
Crisis intervention
Information
Listening
More evidence is our only priority there is only medicine which has been adequately tested medicine which has not
Shared understanding is the priority
The real issue for conventional medicineis to learn from alternative practicesto regain the knowledge we have lost in information
120
Angell Kassirer NEJM 1998, 339:839-841 Davidoff Ann Intern Med 1998, 129:1068-1070
Dr Jane Maher
Who will fund research into areas which do not result in a profitable product? Developing the tools which measure things not serious enough to be pathological To explore the links between mind, body spirit Therapeutic relationship
Dr Jane Maher
Stamp out non-evidence based practice
By 1995 70 of cancer centres and hospices in the UK offered at least one complementary therapy Commonly aromatherapy massage Charitably
funded
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191
No evidence for it?
123 125 127
Cooke B, Ernst E Aromatherapy : a systematic review Br J Gen prac June 2000, 493-496 The reviewers conclude that the effects of aromatherapy are probably not strong enough to be useful
124
The cost of getting evidence
To demonstrate a significant increase in success rate between massage with without aromatherapy would need a sample size of over 1000
Stamping out non evidence based practice Does this mean that aromatherapy massage should cease in UK cancer centres and hospices? Andrew Vickers BJGP June 2000
A patients view
Evidence common sense
126
To be honest, I dont really care if it works for 100 other people or not, it works for me and thats enough
Some cancer centres have a hairdresser who comes round the wards it makes people feel better have we got to do a randomised trial now to prove its a good idea?
Volunteer support centre
Dr Jane Maher
Dr Jane Maher
Stamping out non-evidence based practice
128
Three
lessons Value the people skills of therapists Develop a shared language to produce high quality information design high quality studies Develop better tools to measure nonpathological distress
UK Patients will continue to receive aromatherapy massage in the UK American patients will also continue to receive multiple fractions of RT for bone metastases
201
Dr Jane Maher
Dr Jane Maher
Multiple perspectives of investigators Nurse/therapist Dr Susie Wilkinson Oncologist Dr Jane Maher Psychiatrist Professor Amanda Ramirez
Aims
129
To evaluate the effectiveness of aromatherapy massage in improving the life quality of cancer patients A multi-centre randomised study in a real life setting Clinically important outcome measures
130
CR-UK/ICRF/Marie Curie/Macmillan Cancer Relief Mount Vernon Cancer Centre Clatterbridge Cancer Centre
Dr Jane Maher
Dr Jane Maher
Multiple settings Cancer centre Radiotherapy department Hospice Cancer support and information centre
Appropriate target group Advanced but not terminal disease Measurable distress HADS/STAI
Problem : Therapies had different meanings for patients Aromatherapy - passive Need permission Not self help
Relaxation - active Dont need permission Self help
131 133
132
Walker et al, 1999
Dr Jane Maher
Lessons Long set up time Expensive 300K
134
Using traditional acupuncture for hot flushes and night sweats in women taking Tamoxifen A pilot study
de Valois B,1 Young T,1 Hunter M,2 Lucey R,1 Maher E J1
1
Multiple perspectives Multiple end points Need a common language Difficult to accrue Not all complementary therapies are the same
2
Supportive Oncology Research Team, Lynda Jackson Macmillan Centre, Mount Vernon Hospital, Rickmansworth Road, Northwood, Middlesex HA6 2RN Cancer Research UK London Psychosocial Group, Guys, Kings St Thomas School of Medicine, St Thomas Hospital, London SE1 7EH
Objective To evaluate the effectiveness and acceptability of using traditional
acupuncture to manage hot flushes and night sweats experienced by women taking Tamoxifen as an adjuvant treatment for breast cancer
211
Dr Elizabeth Thompson
Consultant Homeopathic Physician and Honorary Senior Lecturer in Palliative care Bristol Homeopathic Hospital
4
Dr Elizabeth Thompson
Research projects investigation levels of psychiatric morbidity and coping strategies in cancer patients using CAM Plan to take part in multi-centred trial with TRAUMEEL stomatitis for adults undergoing BMT Plan to conduct RCT with iscador re supporting immune function and QoL
1 Homeopathic approach to symptom control in the cancer patient 2 Clinical Trials Steering Group and Regional Complementary Therapy Research Group 3 Association of Palliative Medicine Task Group for Complementary Therapies reviewing holistic tools to create a handbook of tools
136
135 137 139
5 MD thesis RCT of women with breast cancer and menopausal symptoms using homeopathy Assessment of symptom control, mood
disturbance and QoL 6 Homeopathic consultation the process
Dr Elizabeth Thompson A Nutraceutical Approach to Glioma Management
References: The Homeopathic Approach to the Treatment of Symptoms of Oestrogen Withdrawal in the Breast Cancer Patient A Prospective Observational Study
138
Thompson EA Reilly D accepted for publication Homeopathy Feb 2003
A Pilot Randomised Placebo-Controlled Trial of Homeopathy in the Management of Menopausal Symptoms in Breast Cancer Survivors
Thompson E, Douglas D, Norrie J, Reilly D Oral presentation 8th International Conference of CAM, Exeter University Homeopathy in cancer careBr Homeopath J 2000 Apr;892:61-2
Dr Bali Rooprai /Professor Geoffrey Pilkington Institute of Psychiatry, Kings College, London
Dr Bali Rooprai /Professor Geoffrey Pilkington
Dr Bali Rooprai /Professor Geoffrey Pilkington
Research plan to study the effects of citrus flavonoids on gliomas Effects of citrus flavonoids on parameters of brain tumour invasion in cell cultures
derived from adult paediatric brain tumour biopsies Tissue Culture Dr Bali Rooprai Miss Maria Christidou Blood-Brain Barrier Animal and Human Dr David Dexter Miss Maria Christidou
Citrus flavonoids:
Several reports suggest that citrus flavonoids have antiinvasive, anti-proliferative and anti-angiogenic effects in other cancers No reports of effects of citrus flavonoids in brain tumours apart from our studies
140
221
Dr Bali Rooprai /Professor Geoffrey Pilkington
Protocols used to study the Effects of Citrus Flavonoids on Gliomas Viability assays Flow cytometry Collaboration with Dr Davies, Cancer Research UK
141 142
Dr Bali Rooprai /Professor Geoffrey Pilkington
Cumulative results
CITRUS FLAVONOIDS Tangeretin/nobiletin - downregulation of Proteases MMPs mediating invasion ISOFLAVONES Soya/Red Clover - upregulation of NCAMs reduction of cell motility RED GRAPE SEED EXTRACT - downregulation of CD44 upregulation of NCAMs - Angiogenesis ? CHOKEBERRY EXTRACT - downregulation
of MMPs CD44 LYCOPENE Tomatoes - reduction of motility SELENIUM - induction of apoptosis
Time lapse video microscopy Collaboration with Dr Zicha, Cancer Research UK Blood-Brain-Barrier Collaboration with Neurosurgeons at Kings College Hospital Gene expression of degradative enzymes proteases Collaboration with Prof Edwards- University of East Anglia
Dr Bali Rooprai /Professor Geoffrey Pilkington
Clinical trial: Nutraceutical Approach to Glioma Management
Tangeretin [citrus flavonoids] 200 mg/day Isoflavones red clover/soya 350 mg/day
Dr Bali Rooprai /Professor Geoffrey Pilkington
Clinical trial: nutraceutical approach to glioma management Ethical approval obtained from Kings College Hospital in November 2000
144
143 145
Have to activate trial within 3 years
Red grape seed 300 mg x twice daily Chokeberry extract flavonoids /lectins 200 mg/day Selenium 200 g/day
Negotiated with all suppliers for flavonoids from USA and Israel for the trial There is NO FUNDING to
activate the trial yet
Lycopene tomato 25 mg/day
Dr Jacqueline Filshie Consultant in Anaesthesia Pain Management Royal Marsden Hospital, London and Surrey Honorary Senior Lecturer, Institute of Cancer Research The Use of Acupuncture in Symptom Management in Palliative Care
Dr Jacqueline Filshie
146
Breast Pain
231
Dr Jacqueline Filshie
Breast Pain
Radionecrotic Ulcers
67 patients Average pain Worst pain Distress levels Interference with lifestyle Pain behaviour Anxiety Depression
age n56
Timescale one month
improvement p0001 improvement p0001 improvement p0001 improvement p0001 improvement p0001 marginal fall significant fall p005 Filshie, 1997
147 149 151
148
Dr Jacqueline Filshie
Dr Jacqueline Filshie
Advanced cancer related breathlessness Pilot study 20 patients Subjective improvement of breathlessness Borg VAS Objective improvement of breathlessness Respiratory rate Profound sense of relaxation
P0005 P 002
150
Advanced cancer related breathlessness
P0005
Limited duration 14/20 marked symptomatic relief from treatment Filshie et al, 1996
Dr Jacqueline Filshie
Dr Jacqueline Filshie
Acupuncture can mask cancer and serious problems, therefore should be given or supervised by a physician with knowledge about the clinical stage and treatment
152
An energetic diagnosis alone may be risky in these patients The British Medical Acupuncture Society has made the whole safety issue of AIM available free of charge via its website: wwwmedical-acupuncturecouk
Anxiety, sickness and dyspnoea - indwelling ASAD points
241
Funders of Research in CAM
NHS RD Programme within both the Health Technology Assessment Programme and Regional Programmes The UK Research Councils
CAM Research - General
153 155 157
154
Other medical research charities some with a specific interest in CAM Commercial and industrial sources Also, university based institutions and centres within departments of medicine, hospital sites, primary care, private
institutions
Dr George Lewith University of Southampton Complementary Medicine Research Unit
Randomised controlled trials investigating the use of acupuncture in disabling breathlessness in submission to Thorax A survey of the use of complementary medicine within the cancer care directorate in Southampton University Hospitals Trust Complementary Therapies in Medicine, 2002 An investigation using qualitative techniques into the drivers behind CAM use in cancer and palliative care Department of Health grant involving cooperation between the School of Medicine and the School of Nursing and Midwifery, University of Southampton
156
Professor Edzard Ernst edzardernst@pmsacuk
Peninsula Medical School
The School of Integrated Health at the University of Westminster
The largest higher education provider of CAM professional training in the UK Students can study CAM from undergraduate through to PhD level
158
Clinical training is based within the University training clinic and
placements with other health care providers, for example hospices Research initiatives within the School include assessing the production and safety of plant-based interventions, and the development of a clinical governance framework for CAM practitioners working in primary care http://wwwwminacuk/sih/
Dr Adrian White
251
Research Council for Complementary Medicine RCCM
The aims: Facilitation of appropriate research Foster a network of researchers Complementary and Alternative Medicine Researcher Network CAMRN and promote, undertake, commission and facilitate research
Research Council for Complementary Medicine RCCM
Exploration of the relationship between CAM and conventional medicine Dissemination To collect, review and disseminate research-based information about CAM treatments and philosophies, to provide the public, government organisations, researchers and practitioners with an evidence-base
160
159 161 163
http://wwwrccmorguk
Research Council for Complementary Medicine
RCCM
Database of research citations in CAM This Centralised Information System in Complementary Medicine CISCOM contains over 83,000 records and applies a specialist thesaurus in order to index and retrieve the citations More than 3,500 of these records relate to CAM research in cancer
Research Council for Complementary Medicine RCCM
The development of a database of CAM in cancer care is underway Funded by the UK Department of Health This development includes the synthesis, through a systematic review and appraisal process, of the research literature relating to 10 CAM therapies and their use in cancer Undertaken in association with the School of Integrated Health at the University of Westminster -Dr Janet Richardson wwwrccmorguk
162 164
Building CAM Research Capacity
Jos Kleijnen
261
Department of Health
Strategy to Develop CAM Research Capacity
Department of Health
Strategy to Develop CAM Research Capacity The structure of the capacity building initiative will comprise four
elements:
an environment that supports and values the development of research skills and experience, enables access to research training opportunities and resources to undertake research activity, provides secure and attractive career pathways and encourages the development of high quality research projects Professor Cliff Bailey NHS Research Capacity Development Programme
1 Identification of host academic institutions, with a demonstrable track record of appropriate research activity and collaboration with CAM organisations, to provide methodological advice, skills development and research support 2 Personal award schemes at postdoctoral and training fellowship levels 3 Establishment of a commissioning mechanism 4 Development of a research support network
165 167 169
166
Wellcome Trust
Funding of research in CAM 4 major panels, each with their own scientific remit neurosciences, infection and immunity, physiology and pharmacology and molecular and cell CAM research must fall
within the biomedical remit and the science is judged by peers must be of sufficiently high quality to avoid bias, scientific officers go to great lengths to select referees with the necessary expertise to peer review proposals
Wellcome Trust
Funding of research in CAM CAM is reviewed through the panel system enhances its credibility among other areas of science rather than being viewed as a second rate science
168
Majority of funded research is in counselling and nutrition The Trusts History of Medicine Programme offers opportunities to explore the development and understanding of CAM therapies by exploring the cultural, social and economic contexts of these areas
Issues in CAM Research
Issues in CAM Research
Safety Efficacy Effectiveness Cost effectiveness
The role Plausibility Pseudoscience
Funding Prioritising
Trial design Outcome measures Measuring tools
170
Placebo response Therapeutic relationship
CAM vs orthodox practitioners perspectives Shared language
Dialogue
271
Addressing Safety
Plausibility
Pet Diagnostics
171 172
Can canines detect cancer?
Church J and Williams H Another sniffer dog for the clinic? Lancet 2001 Sept 15; 3589285: 9300
Trial Design
The reasonable man adapts himself to the world: the unreasonable man persists in trying to adapt the world to himself Therefore all progress depends on the unreasonable man George Bernard Shaw
173
174
Challenges of dealing with alien language
Dealing with claims
The human body is an electromagnet, producing a radiating energy field aura affected by incoming energy channelled through the healer
the essential oil germanium is very effective for menopausal problems, diabetes, blood disorders, throat infections applications from frostbite to infertility
175
176
Worwood VA, The Fragrant Pharmacy 1991 : 25
281
Collaboration
Oxford English dictionary definition Consort traitorously with the enemy
The Therapeutic Relationship
177 179 181
178
OR
Work jointly with each
other
180
A visit from the doctor
Print, by Thomas Rowlandson, Smith, RAL, Bath, London, Batsford, 1944
The consultation, or last hope
Engraving, May 12, 1808, by Thomas Rowlandson
182
A gouty patient in his room full of unproductive doctors
Coloured etching by Thomas Rowlandson, 1808
The Therapeutic Relationship
291
The Therapeutic Relationship
183
184
BMJ 28th September 2002 Issue: 7366
Courtesy of The Advertising Archives
Measurement Tools
Dr Charlotte Paterson
Measure Yourself Concerns and Wellbeing MYCAW
Follow up form self completion version
Developing a tool to measure holistic practice: a missing dimension in outcomes measurement within complementary therapies
185 186
Todays date Look overleaf at the concerns that you wrote down before please do not change these On this side of the form, circle a number to show how severe each of those concerns or problems is now: Concern or problem 1: 0 1 2 Not bothering me at all Concern or problem 2: 0 1 Not bothering me
at all 2 3 4 5 6 bothers me greatly 6 bothers me greatly
Long AF, Mercer G, Hughes K Health Care Practice RD Unit, University of Salford, UK
3
4
5
Dr Charlotte Paterson
Wellbeing: How would you rate your general feeling of wellbeing now ? How do you feel in yourself? 0 1 As good as it could be
187
Spirituality and Clinical Care
2
3
4
5
6 As bad as it could be
188
Other things affecting your health The treatment that you have received here may not be the only thing affecting your concern or problem If there is anything else which you think is important, such as changes which you have made yourself, or other things happening in your life, please write it here What has been most important for you? Reflecting on your time with this Centre, what were the most important aspects for you? write overleaf if you need more space Thank you for completing this form
BMJ 21st December 2002 Vol 325 Issue: 7378
301
Rosetta Life
Rosetta Life is an artist-led organisation enabling
people with life threatening illnesses and their families to explore their experiences through video, photography, drama, poetry, fiction and other art forms
Patient Centred Research
189
190
We have now received funding to work in partnership with a network of hospices creating a shared website for palliative care users served by multi-media arts centres at each site
Macmillan Cancer Relief
Macmillan Cancer Relief
Developing a research programme
User involvement in shaping the agenda Ensuring people affected by cancer are involved in research
Improving the evidence base Involving people affected by cancer in research Ensuring that research in areas prioritised by people affected by cancer are taken forward Influencing the research priorities of other funders
191 193
192
CancerVOICES, is a well established and widely respected network of over 400 user representatives The CancerVOICES Reference Group will act as key advisors on the development of the research
strategy
Macmillan Cancer Relief
Complementary Therapy in Cancer Charity Group
The User Involvement Programme has been established as one of Macmillans five key service programmes for 2002 and beyond
Macmillan Cancer Relief Prince of Waless Foundation for Integrated Health Marie Curie Cancer Care Breakthrough Breast Cancer Bristol Cancer Help Centre
194
Collaborative Group supported by HRH the Prince of Wales to promote and encourage research in the field
311
Issues in CAM Research
The Future
Safety Efficacy Effectiveness Cost effectiveness
The role Plausibility Pseudoscience
Funding Prioritising
Trial design Outcome measures Measuring tools
195 197 199
196
Placebo response Therapeutic relationship
CAM vs orthodox practitioners perspectives Shared language Dialogue
Delivering Care
How complementary therapies can help patients during their cancer journey
Conveying the patients voice
Technology Delivery Finance Society
Its acupuncture thats helped me to
cope with the chemo Maggie on the reduction in nausea she experiences since she started having acupuncture before each chemotherapy treatment Ive learnt to carry on the relaxation at home too I sleep better and dont get so worked up Arthur, who attends a weekly relaxation group Massage simply makes me feel better and more able to cope Rose, whose husband has cancer
198
Dr Michelle Kohn
MB BS, BSc, MRCP UK
Complementary Therapies Medical Advisor to Macmillan Cancer Relief UK and Advisor to the Department of Health UK
NCIs - OCCAM March 26th 2003
321
Source:chirohealth.org
