APPENDIX 15
Memorandum submitted by Macmillan Cancer
Relief
EXECUTIVE SUMMARY
Macmillan Cancer Relief is a national charity
that works to provide people who have cancer, and their families,
with expert nursing and medical care as well as emotional and
practical support. The charity is extensively involved in funding
and promoting evidence-based cancer care research related to the
needs of cancer patients resulting from the impact of the disease
and its treatment. It works with the NHS and others in the voluntary
and charitable sector to translate such research into practical
application.
If the Government is to deliver its pledge dramatically
to improve the overall standard and quality of cancer services
in the UK, the organisation, funding and regulation of research
into the causes, prevention and treatment of cancer must be pursued
efficiently.
Macmillan believes that scientific and technological
research alone will be insufficient to deliver meaningful changes
to patient care. Care-based research related to the needs of cancer
patients, and the development of new therapeutic interventions,
are essential complementary components. Too little attention has
been devoted to these areas in the past.
Macmillan is concerned that there is currently
a significant organisational and funding divide between scientific
research into causes, prevention and treatment on the one hand,
and identifying patient needs and developing new models of care
on the other. The latter continues to attract less attention
and funding. Moreover, research is compartmentalised and there
is little formal flow of information between research disciplines.
These factors combine to inhibit the effective
dissemination of research evidence. Surveys of Macmillan postholders
have found that grassroots staff have difficulty accessing it
and lack the necessary tools to translate findings into clinical
practice.
Macmillan therefore urges the Committee to take
full account of the totality of cancer research in its deliberations,
and to focus on the impact of such research on patients and their
quality of life.
Macmillan has a number of positive recommendations
to improve the efficacy of the UK's overall cancer research effort:
— that efforts be directed at the highest
levels to recognising and rewarding the validity of patient-led
evidence-based cancer care research;
— that mechanisms be put in place to
ensure that central support and funding is available for care-based
research;
— that structural changes be made to
encourage greater national co-ordination of cancer care research
results;
— that priority be given centrally
to research into complementary therapies within NHS research and
development programmes; and
— that greater efforts be made to capture
the experiential knowledge of practitioners in the devising, implementing
and disseminating the results of research projects.
1. INTRODUCTION
1.1 In the UK today over a million people
are living with cancer, and 40 per cent of the population will
be affected by it at some stage in their life. If current trends
continue, it is predicted that those odds will shorten, and that
by 2020 the number living with cancer will have doubled. Driven
in part by these statistics, cancer has undoubtedly been accorded
a higher political priority in the past few years than ever before.
To be in a position to respond to the increasing cancer burden,
it is vital that all those involved in research into the causes,
prevention and treatment of cancer, and in the care of patients,
work together to improve the nature, quality and accessibility
of cancer care.
1.2 Macmillan Cancer Relief is a national
charity that works to provide people who have cancer, and their
families, with expert nursing and medical care as well as emotional
and practical support. Information about the charity's work is
included at Annex I. Whilst not involved in mainstream scientific
and technological research into the causes, prevention and treatment
of cancer, Macmillan has been extensively engaged in funding and
promoting evidence-based cancer care research related to the needs
of cancer patients resulting from the impact of the disease and
its treatment. Macmillan works with the NHS and others in the
voluntary and charitable sector to translate such research into
practical application.
1.3 The charity played a crucial role in
developing the speciality of palliative medicine. Modern palliative
care began in 1967, with developments being led by the voluntary
sector, such as Macmillan specialist nurses. It was a further
20 years before palliative medicine was recognised by the Royal
College of Physicians and specialist training provided through
senior registrar posts. Macmillan pump-primed a high proportion
of these new posts, and its support ensured that the fledgling
speciality was firmly established. Today, the charity funds a
number of academic Chairs and Senior Lectureships in nursing,
medical and social work, all of which incorporate a research function.
This is complemented by the work of the Macmillan Practice Development
Units into nursing practice. Time and effort have also been invested
in promoting and disseminating such research, which has in turn
led to the implementation of new therapeutic interventions in
clinical practice, as well as new models for the provision of
cancer and palliative care.
1.4 In particular, Macmillan aims to identify
areas in which research requires translation into practice, using
tailored posts as an intervention to facilitate this, and subsequently
evaluating and refining the intervention. This innovative approach
has since been used to develop a range of specialist nursing and
medical posts based in the community as well as hospital settings.
At the heart of Macmillan's work, therefore, are the Macmillan
doctors, nurses and other allied professionals who are employed
by the NHS but whose posts are funded for an agreed period of
time by the charity. These posts are continually changing in response
to emerging—often research-based—ideas about the treatment
and care of cancer patients.
Case Study: Research and Development of Specialist
Staff
Macmillan has been continuously developing and
refining new specialist nursing posts to meet the identified needs
of cancer patients. The charity is currently piloting a new Macmillan
Primary Care Nurse: a post which takes the lead for the development
and co-ordination of cancer within a primary setting, and which
complements and supports the work of other professionals engaged
in the delivery of palliative care. The post was initially developed
following extensive qualitative research with patients which suggested
that, although they recognised that the specialist provider of
care may change during the course of the disease, many sought
an additional single point of contact with someone with specialist
expertise throughout the course of their illness to provide meaningful
and appropriate information, and to manage the interface between
primary, secondary and tertiary care.1 An initial evaluation suggests
that this post has had a dramatic effect on patients' quality
of life and management of their disease.
The Primary Care Nurse is the latest in a long line of nursing
interventions designed to improve the care and treatment of cancer
patients. In 1975, following research which found that most GPs
and District Nurses were either unaware or ignorant of the benefits
of palliative care, Macmillan funded its very first community-based
nursing posts. These nurses worked alongside colleagues in order
to bring to their attention relevant research, and to model good
practice in relation to the care of cancer patients. The initiative
was subsequently expanded to include hospital-based posts, and
today there are nearly 2,000 specialist Macmillan nurses working
at all levels within the health service.
1.5 With the charity's historical and ongoing
involvement in evidence-based cancer care research, and in particular
the effective translation of that into clinical practice, Macmillan
has an informed perspective on a number of aspects of the Committee's
inquiry. The charity welcomes the opportunity to submit evidence
to the Committee and has focused its submission on these specific
areas.
2. THE ORGANISATION
AND CO-ORDINATION
OF CANCER
RESEARCH
2.1 With greater numbers of people living,
and living longer, with cancer, it is increasingly clear that
patient care goes beyond medical intervention. Evidence suggests
that survival and recovery rates may be significantly enhanced
when treatment is delivered via a multidisciplinary team and encompasses
care and practical and emotional support2. Ensuring the efficacy
of evidence-based research into patient care as well as that relating
to the causes, prevention and treatment of cancer will be equally
important in the longer term. Macmillan would therefore urge the
Committee to take full account of the totality of cancer research
in its deliberations, and in particular to recognise the role
that research into the management of the disease can play in improving
the patient's quality of life.
2.2 Macmillan is concerned that there is
a significant organisational and funding divide between scientific
research into causes, prevention and treatment on the one hand,
and identifying patient needs and developing new models of care
on the other. This is exacerbated by the fact that there is little
formal recognition of the validity and importance of evidence-based
cancer care research into patient needs, or of the practice-based
development of new services and standards of care to meet them.
2.3 The overall quality of life for a patient
with cancer is vitally important. It can be improved dramatically
and immediately by the provision of specialist palliative care
and support. This is particularly true of vulnerable patients
in an advanced stage of the disease for whom invasive treatment
may be inappropriate. Despite these potentially large benefits
to patients, research into service development, clinical practice
and patient care continues to be accorded far less weight in terms
of attracting either funding or academic and media attention.
As a result, the dissemination and translation of scientific research
findings into clinical practice is made more difficult, and a
vicious circle ensues.
Case Study: The Benefits of Care-Based Research
on Patient Outcomes
Cancer is a disease which particularly affects
older people, many of whom will be receiving care in nursing homes
from auxiliary as well as general nursing staff. In partnership
with the Registered Nursing Homes Association, Macmillan funded
a Palliative Care Education Pilot Project In Nursing Homes which
aimed, through the provision of specialist staff training, to
improve the palliative care of residents dying from a wide range
of diseases.3
Courses based on clinical best practice were established,
and training was found to have not only improved the care of residents,
but influenced approaches to staff working and the overall culture
of care—both significantly different from that in other
healthcare settings. Macmillan is now looking at developing measures
to improve the links between nursing homes and specialist staff,
as well as new roles to facilitate changes in the institutional
approach to cancer care and enhance staff training.
2.4 Macmillan is concerned that cancer research
tends to be unduly compartmentalised and categorised. There are
few formal links between research disciplines or establishments,
and individual projects may be carried out almost in isolation,
categorised as "academic", "scientific and technological"
or "practice-based". In particular, there is little
flow of information and ideas between those developing new treatments
and services and those responsible for delivering them. In terms
of patient outcomes, new drugs or types of treatment are most
effective when delivered as part of an integrated package of care,
by specialist staff and in the most appropriate setting. All too
often, however, care-based cancer research is not conducted as
a complement to scientific research, but is an effort to catch
up with it.
Case Study: Co-ordination of Research—A
Better Patient Outcome
Research has consistently shown that it is important
for patients to receive treatment in buildings which provide a
high quality, supportive environment with a calm and safe atmosphere.4
Drawing on existing Macmillan expertise with in-patient facilities
and lessons learnt from the hospice movement, Macmillan carried
out a programme of research to develop a flexible model for palliative
care facilities. This was published in 1987 as "Macmillan
Green". In the continued absence of NHS facility planning
data, this remains the only specific guidance on palliative care
building, and allows facilities to be planned around a tested
set of room-level quality and space planning data to ensure that
treatment is delivered in the optimal setting.
Since 1995, Macmillan has been actively involved in planning
and developing oncology and haematology facilities. Evaluation
of early units has already greatly improved the current generation
of schemes and a similar process has now begun with patient information
and resource centres and breast care units.
2.5 Macmillan recommends that efforts should
be directed at the highest levels to recognising and rewarding
the validity of patient-led, evidence-based cancer care research.
Mechanisms should be put in place to ensure that central support
and funding is available to this research area.
2.6 Macmillan further recommends that structural
changes be made to encourage greater nationalco-ordination of
cancer care research results.
3. COMPLEMENTARY
THERAPIES
3.1 Particular problems arise in respect
of research into complementary therapies for cancer patients.
Dr Michelle Kohn has recently conducted a scoping study in this
area on behalf of Macmillan5, which has been submitted as evidence
to the House of Lords Select Committee Inquiry into complementary
and alternative medicine. It is generally agreed that research
is needed to evaluate the worth of complementary therapies in
cancer care, but the subject is currently accorded a relatively
low priority in research terms. Moreover, the study found that
there were several significant difficulties in conducting such
research which will need to be overcome.
3.2 Research into complementary therapies
is both time-consuming and expensive. To be conducted effectively,
such research requires a unique merging of different types of
specialist skills not readily available in more traditional cancer
research. Trained researchers from orthodox medicine have to be
encouraged to conduct trials, as they have access to both the
necessary infrastructure and cohort of patients. In addition,
complementary therapists must be willing to collaborate and advise
on changes to trials to accommodate the needs of therapies. For
example, trials must be designed so as to distinguish between
the effect of the therapist on a patient's well-being and the
effectiveness of the therapy.
3.3 There are also undoubted methodological
problems involved in subjecting these treatments to clinical trials6,
since many of the benefits to patients are intangible. These problems
relate in particular to the constraints put on the provision of
therapy to conform to the traditional design of clinical trials
and the nature of the control group. For example, when using acupuncture
as an aid to combat nausea in cancer patients, a non-acupuncture
point is not a suitable site for a control needle since needling
other points may also have an effect.
3.4 There is clearly a need for good-quality
studies into the efficacy of complementary therapies in cancer
care, as well as their potential benefits to patients. At present,
most research in this area is uncontrolled, using small sample
sizes and being poorly reported. The active support of research
bodies with the manpower and skills to guide such valid and effective
clinical trials will be vital if the quality of research in this
area is to be improved. This is not forthcoming at present.
3.5 Macmillan recommends that priority be
given centrally to research into complementary cancer care therapies
within NHS research and development programmes.
4. IMPLICATIONS
OF RESEARCH
FOR CANCER
PATIENTS
4.1 The objective of all types of cancer
research is to make a meaningful difference to patient outcomes,
through either the prevention or treatment of the disease. Much
scientific and technical research is, however, conducted remote
from patients, and the implications of research findings on them
are easily overlooked. Macmillan wishes to draw the Committee's
attention to the impact that the results of such research can
have on cancer patients.
4.2 Clincial trials are one obvious way
in which cancer research impacts directly on current cancer patients.
Such trials are of vital scientific importance in the development
of new treatments, but it must always be borne in mind that they
are conducted on a vulnerable group of patients, and their organisation
and conduct must be sensitively handled. The psychological effect
on cancer patients of being included in, or not being given the
opportunity of participating in, clinical trials of emerging drugs
should not be under-estimated.
4.3 Similarly, the reporting of cancer research
results in the media can have a practical impact on how patients
manage their disease. Last year, Macmillan conducted a survey
of recent press coverage of cancer. Stories of miracle cures and
wonder drugs abounded—some true, but many highly misleading.
Unrestrained or over-blown reporting of cancer research results,
particularly those relating to new "cures", can inappropriately
raise patient expectations. It can take a considerable amount
of time before scientific and technological research into the
nature and causes of particular cancers is translated into potentially
new forms of treatment or therapy. A further period of time must
elapse whilst clinical trials are carried out before these new
developments are incorporated into patient care. In light of this,
it is important that reporting on cancer research developments
is handled responsively if it is not to have a negative effect
on those people actually coping with cancer.
4.4 Macmillan calls upon all those involved
in cancer research to redouble their efforts to ensure that the
needs and concerns of cancer patients remain of paramount importance
in the handling and reporting of research projects.
5. BARRIERS TO
TAKING FORWARD
RESEARCH
5.1 Macmillan commends the Committee for
including in its terms of reference an acknowledgement of the
importance of having the necessary mechanisms in place to ensure
research findings are acted upon. It would nevertheless draw Members'
attention to the need to ensure that such findings are accessible,
widely disseminated and translated into practical application
at a grassroots level; the charity does not believe this is adequately
fulfilled at present.
5.2 Macmillan recently conducted a survey
amongst its post holders to examine their practice development
needs; the survey also highlighted a number of specific constraints
which prevent the effective application of research findings in
a clinical setting7. The survey identified a keen interest amongst
specialist nurses in learning more about research evidence, but
highlighted difficulties amongst the group both in gaining access
to such evidence and in having appropriate tools available to
evaluate its utility and effectively apply it to the work environment.
This inevitably hampers the effective translation of research
findings into practical application. Many nurses wished to learn
more about practice development and recent clinical research in
order to improve their provision of care, but lacked the necessary
time protected from their day-to-day clinical work and senior
management support to engage in this activity.
5.3 Macmillan believes these problems to
be common amongst health care professionals, and has been working
to overcome them in respect of its postholders. This is outlined
in more detail in Section 6. In general, however, Macmillan recommends
that a more systematic approach be adopted to bridge the gap between
research and practice. In particular, all research projects should
seek to capture the experiential knowledge of health care professionals.
6. MACMILLAN:
A PRACTICAL RESPONSE
6.1 In 1995, Macmillan established the first
Macmillan Practice Development Unit (MPDU) at the Institute of
Cancer Research in London to develop the practice of Macmillan
nurses; a second unit was subsequently established at Manchester
University. A total of over £1.1 million will be invested
over the course of ten years in a sustained programme of practitioner-devised
and focused research and development. A complementary Professional
Resources Programme disseminates the units' findings and supports
the ongoing training and education of staff.
6.2 The MPDUs are staffed by credible active
researchers who not only contribute to the generation of evidence,
but also act as an accessible source of help and advice on research-related
issues to Macmillan nurses and other professionals involved in
cancer care. In 1999, the Manchester Unit responded to over 100
requests from nurses and organisations concerned with cancer and
palliative care. Through the units' work, a model of research
has been developed, based on collaboration, in which the end users
of the research findings are actively involved in identifying
and designing studies, in helping to collect and evaluate data
and in disseminating research findings. This ensures that practitioners
are immediately engaged in the process of research and its subsequent
implementation into practice.
Case Study: Practice Development Units—Bridging
the Gap
During 1998, the MPDU conducted a pilot study
of a nurse-led clinic using non-pharmacological techniques to
manage breathlessness in advanced lung cancer—a difficult
and distressing symptom for many patients—which revealed
evidence of significant benefit. The pilot was simultaneously
replicated and disseminated by arranging for Macmillan nurses
in six centres to establish similar clinics and participate in
a multi-centre randomised controlled trial. The results were published
in the BMJ, an unusual achievement for a nursing study.
The MPDU has now invited centres to become teaching and resource
sites to demonstrate and disseminate the breathlessness management
technique throughout the NHS. It will assist in training and support,
networking practitioners and sharing good practice, as well as
further development of the technique, and is also developing innovative
dissemination materials such as an interactive web site and CD-rom.
Throughout the process of the formal clinical trials, the nurses
participating have also been studied to gain insights into the
effects of participation in research activities.
6.3 The MPDU model brings together the issues
of research evidence and the development of innovative models
of nursing practice, dissemination and utilisation8. Practitioner
involvement has helped to overcome some of the problems traditionally
associated with the practical application of clinical research.
Macmillan's Professional Resources Programme is specifically designed
to encourage this further through the proactive promotion and
dissemination of research findings, as well as continuous professional
education and training to facilitate the utilisation of research
in practice.
6.4 This year Macmillan will be launching
six research dissemination conferences around the UK in order
to engage Macmillan nurses and others collaboratively in the translation
of new research findings emerging from the work of the MPDU into
the practice setting. These are supplemented by the Macmillan
Evidence Update bulletin which is produced three times a year
and contains a selection of recently published work, often 130
references. The bulletin is sent to all postholders, and the feasibility
of library support via an inter-active website is being explored.
6.5 In 1998, Macmillan established the Macmillan
National Institute of Education (MNIE). Based on seven universities
around the UK, it will aim to ensure that Macmillan nurses and
other postholders are fully equipped for their roles by making
the results of Macmillan's own evidence-based cancer care research
readily and widely available. The MNIE therefore supports and
supplements the dissemination work of the MPDU. Proactive dissemination
of research findings is also achieved through publication in peer-reviewed
professional journals such as the Macmillan Nurse Magazine, the
Nursing Times and the International Cancer Nursing Journal. In
addition, the charity hosts regular networking and information
events as well as educative seminars to encourage the sharing
of best practice.
6.6 From its conception, Macmillan has used
education to foster best practice, and all Macmillan postholders
have a substantial education component to their role. This involves
formal and informal teaching, as well as role modelling good practice
in the clinical environment. In addition, Macmillan has set up
a network of dedicated education posts.
Case Study: Macmillan GP Facilitators
As the speciality of palliative medicine developed,
it became clear that care delivered at home and in acute hospitals
by generalists was often sub-standard. In an effort to enhance
care delivered by GPs and Primary Care Teams, Macmillan developed
a pilot role of GP Facilitator. Experienced practising GPs with
a special interest in cancer care, they spend time each week sharing
their skills and knowledge with colleagues in the community in
order to raise the overall standard of care. The facilitators
are seen as a credible and acceptable source of information, education
and advice. Meetings with practice teams in their own premises
are an effective and efficient educational activity, when in-house
arrangements for palliative care and individual cancer issues
may be discussed.
An evaluation of the project concluded that the model was
successful in enhancing care through professional education, and
evidence of change was noted. With the move towards PCT commissioning
and community-based chemotherapy, the educational role of the
GP facilitator will continue to be vital.
6.7 These initiatives help to ensure that
Macmillan postholders benefit from the most up-to-date evidence-based
research. As a result they are both better equipped for their
roles and able constantly to develop and promote evidence-based
cancer care research and practice.
6.8 Macmillan's overall approach to cancer
research and service development is perhaps best typified by its
recent work on patient information: developed in response to identified
patient needs and translating basic research into practical applications,
Macmillan's Information Service Department now resources NHS Cancer
Centres.
Case Study: Theory into Practice
"Being well informed is a vital part of
living with cancer. For me, understanding what was happening helped
me to overcome my fear and put me back in control of my life".
(FB-cancer patient).
Macmillan undertakes regular surveys to identify patient
needs and, as a direct result of this qualitative work, in 1997
it decided to develop a dedicated strategy to help people affected
by cancer get better information and support9. Focus group research
with patients, and discussions with charity colleagues and post
holders, helped to identify the type of information and support
required, and an innovative new support mechanism—the Macmillan
Information Line—was established. The first Cancer Guide
was published and distributed with government support.
In addition, an Information Service Department was set up
to support work with the NHS Cancer Services on patient information.
There are four key aspects to its work:
—information consultancy to help cancer
care providers think through the need for a service, as well as
expert resources to develop and set up a service plan, including
staffing, finance, building and marketing requirements;
—to assure the quality of cancer information services, the
Quality Programme sets out a model service, as well as providing
a tool kit to audit and measure success;
—a directory of patient cancer information materials, as
well as a guide for staff, have been produced in partnership with
the Centre for Health Information and Quality;
—a primary care programme is testing templates for the delivery
of patient cancer information in a primary care setting.
7. CONCLUSION
7.1 If the Government is to deliver its
pledge dramatically to improve the overall standard and quality
of cancer services in the UK, the organisation, funding and regulation
of research into the causes, prevention and treatment of cancer
must be pursued efficiently. Political, academic and media attention
is quite rightly focused on these aspects of cancer research,
and the Select Committee's investigation will be a welcome contribution
to the debate.
7.2 Whilst recognising the vital importance
of scientific and technological research in this context, Macmillan
believes that, on its own, it is insufficient to deliver meaningful
changes to patient care. Care-based research and practice development
is an essential complementary component. It is this area that
has traditionally been overlooked, and now needs to be addressed.
7.3 Macmillan has been extensively engaged
in funding and promoting evidence-based cancer care research related
to the needs of patients resulting from the impact of the disease
and its treatment, as well as ensuring its effective translation
into clinical practice. It stands ready to assist in efforts to
improve the UK's overall cancer research effort.
8. SUMMARY OF
RECOMMENDATIONS
8.1 Macmillan recommends:
— that efforts be directed at the highest
levels to recognising and rewarding the validity of patient-led
evidence-based cancer care research;
— that mechanisms be put in place to
ensure that central support and funding is available to this research
area;
— that structural changes be made to
encourage greater national co-ordination of cancer care research
results;
— that priority be given centrally
to research into complementary therapies within NHS research and
development programmes; and,
— that greater efforts be made to capture
the experiential knowledge of practitioners in the devising, implementing
and disseminating of the results of research projects.
8.2 Macmillan further calls upon all those
involved in cancer research to redouble their efforts to ensure
that the needs and concerns of cancer patients remain of paramount
importance in the handling and reporting of research projects.
7 March 2000
REFERENCE
1 Mori/Macmillan (1995), (1999) Patient
Survey
2 NHS Guidelines on Commissioning Cancer
(COG Guidelines)
3 Macmillan Cancer Relief/The Wolfson Foundation
(2000): Evaluation of the Palliative Care Education Pilot Project
in Nursing Homes
Froggart Hasnip, Smith (1998): Education for
Staff in Nursing Homes. Nursing Times 94(22):61
Froggat Hasnip, Smith (2000): The Challenge
of End of Life Care. Elderly Care 12 (2)
4 Evaluation Study (1999): The Macmillan
Unit, Royal Lancaster Infirmary. Medical Architecture Research
Unit Southbank University (unpublished)
Evaluation Study (1999): Woodlands Macmillan
Centre, Hinchbrook Hospital. Medical Architecture Research Unit
Southbank University (unpublished)
5 Kohn: Complementary Therapies in Cancer
Care (forthcoming)
6 Vincent & Furnham (1999): Complementary
Medicine, State of the Evidence, Journal of the Royal Society
of Medicine 92 (170-177)
7 Macmillan Practice Development Unit (1999):
Practice Development Needs Survey. Report to Macmillan Cancer
Relief
8 Macmillan Practice Development Unit (1999)
Progress Report Year 2. Report to Macmillan Cancer Relief
9 Mori/Macmillan (1995), (1999) Patient
Survey.
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