APPENDIX 51
Letter to the Clerk of the Committee from
Mr Neville Teller, Macmillan Cancer Relief
We have been following with interest the progress
of the Inquiry, and have attended a number of the oral evidence
sessions.
When we last spoke to your office, we understood
that the time constraints made it impossible to take oral evidence
from the charities engaged in providing cancer care, but that
if any areas of concern to Macmillan were not addressed, we were
invited to offer supplementary comments in advance of the Committee's
questioning of Ministers. We do, in fact, wish to take the opportunity
of commenting on two specific areas:
(a) the role of nurses and other allied professionals
in the cancer research agenda; and
(b) aspects of patient-centred cancer research.
We hope that these comments are helpful to the
Committee's future deliberations.
Role of Clinical Staff in Cancer Research Programmes
Attention has been devoted to the role of oncologists
in existing research, in particular clinical trials. Macmillan
agrees with other witnesses that at present there are inadequate
numbers of oncologists involved, and that improvement in the situation
depends both on more oncologists and the development of a necessary
infrastructure to facilitate their greater involvement. We are
concerned, however, that little attention has been devoted to
the involvement of other staff in clinical cancer research.
There are considerable manpower and resource
implications associated with a phased expansion of the clinical
trials programme, and these extend beyond the limitations of the
network of clinical oncologists. If we are to improve the level
and management of cancer trials across the UK it will be important
to ensure that sufficient number of trained specialist staff from
a broad range of disciplines are engaged in this work.
Macmillan therefore calls upon the Government
to ensure that the ongoing R&D review undertakes a structured
assessment of requirements not only for oncologists, but also
for specialist cancer nurses and other professionals allied to
medicine (PAMs).
We would also wish to draw the Committee's attention
to the findings of a recent survey of Macmillan post holders[22].
This concluded that whilst Macmillan nurses were keen to learn
more about cancer research findings and to engage directly in
practice-based cancer research activities, they were inhibited
by a lack of necessary time protected from their work, senior
management support and requisite tools. This weakness in the current
situation has serious, and adverse, implications for the translation
of technological cancer research findings into best clinical practice.
The resultant failure to engage adequate numbers of specialist
cancer nursing staff in systematic programmes of practice-based
research directly impinges on patient care.
Macmillan calls on the Government to develop
the necessary mechanisms to support the involvement of nursing
staff in research activities, and fund the better dissemination
of research findings as part of its programme of professional
development.
Patient-centred Cancer Research
During the session at which evidence was taken
from a number of cancer charities, much consideration was given
to the need for greater patient involvement, in terms both of
influencing the research agenda and of ensuring researchers have
a better understanding of patient needs. Macmillan is concerned
that no reference was made to the importance of the findings of
clinical and psychosocial research undertaken in a practice setting
in this respect.
Macmillan supports units specialising in psychosocial
and palliative oncology which provide the basis for effective
research in these fields, including examining patient involvement
in setting cancer research agendas and in determining priorities.
We endorse the comments made by CancerBACUP and Cancerlink suggesting
that these techniques would help overcome some of the identified
problems with recruitment and randomisation associated with clinical
trials. Local Calman Hine implementation groups have a role to
play in facilitating this, as do those charities, including Macmillan,
which operate drop-in centres and national helplines. What is
lacking at present is a structured and adequate means of communicating
cancer patients' views to research establishments.
Consultation with groups or individual patients
can help anticipate and address problems with recruitment and
randomisation. It can establish patients' views about appropriate
quality-of-life measures; patients' priorities may differ from
those of clinicians and may involve more complex outcome measures.
In addition, patients can be involved in the process of analysis:
once data has been subjected to initial analysis by the researchers,
the preliminary results can be disseminated to the participants
in order to check that the issues identified accord with those
that patients themselves see as important. Moreover, patients
can be involved in designing measurement tools for future research
by setting the priorities among issues identified, and by helping
with the wording of questionnaires. We trust that the Cancer Research
Funders Forum will prove a useful channel of communication in
formalising these techniques, and look to the Government to address
this issue as a matter of priority.
Another important source of information from
and about cancer patients arises from their regular interface
with doctors and nurses in a practice setting. Ongoing observation
and discussion about a patient's treatment pathway, fears and
psychosocial needs can help clinicians to identify issues of concern
and inform research priorities. For example, comments during routine
consultations with patients being treated for colorectal cancer
with chemo-radiation have revealed the need for a more sensitive
quality-of-life instrument for use in clinical trials.
In many cases the patient concerns and priorities
identified in this way through routine consultations are best
progressed through staff-initiated and staff-led studies and pilot
projects in the practice setting. This enables the development
of a rapid and effective intervention in close cooperation with
the patients themselves. As such it is attuned to their needs
and directly impacts on the management of their disease. It also
helps to encourage the modelling of good practice in a clinical
setting. Macmillan's nursing-led study into the management of
breathlessness in advanced lung cancer patients, referred to in
our written evidence, is a prime example of this.[23]
Practice-based research, though often overlooked
or viewed as less significant than clinical research into new
treatments and preventative measures, has a dramatic effect on
patients' quality of life. For this reason, as well as because
of the vital importance of effective assessment of new cancer
treatments, Macmillan believes that mechanisms should be put in
place to secure better Government funding, support and recognition
for patient-led, practice-based research.
We are concerned that these matters have not
been adequately covered in recent evidence sessions, and would
wish to draw the Committee's attention to them in advance of future
questioning of Ministers.
Please do not hesitate to contact me should
you have any queries or require any additional information.
22 Macmillan Practice Development Unit (1999): Practice
Development Needs Survey. Back
23
British Medical Journal (1999): Bredin, Corner, Krishnasamy,
Plant, Baily, A'Hearn: Multi-centre Randomised Control Trial of
Nursing Intervention for Breathlessness in Patients. Back
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