APPENDIX 6
Memorandum submitted by the Christie Hospital,
NHS Trust
THE RESEARCH
BASE, REVIEW
AND FUNDING
OF THE
NHS CANCER PLAN
AND ITS
DELIVERY TO
DATE
It is too early to comment about the delivery
of the National Cancer Plan. Certainly as far as research is concerned
most of the Networks are only just beginning to take shape, with
key individuals being recruited.
In the broader context it would appear that
the first tranche of money £255 million, has already been
distributed to the Regional Health Authorities as part of the
extra £580 million devoted for delivery of a National Cancer
Plan. A large amount of this money has gone towards funding of
new drugs such as Taxanes, Fludarabine, Herceptin and the tyrosine
kinase inhibitor STI 571 or Glivec. The remaining proportion of
money has only translated into modest increases in staffing numbers
and there certainly is no discernible improvement in service.
The funding for new drugs has continued on a postcode basis despite
this being counter to the main philosophy of the National Cancer
Plan.
The money was given to individual health authorities
ahead of establishment of Networks in a number of areas, ahead
of publication of core guidelines for management of specific tumour
groups and ahead of establishment of research networks. It is
my view that this premature release of money resulted in an ad
hoc use of the money without due attention to the most important
endpoints in cancer which are quality of life and survival of
patients. This devolution of responsibility for implementation
of the Cancer Plan to health authorities without appropriate guidelines
and prior to the setting up of robust networks has resulted in
arbitrary decision making and persistence of postcode prescribing
habits. For example in Manchester, Herceptin (antibody against
the therapy of breast cancer) was only funded by Manchester Health
Authority after patient groups took this story to the press. Manchester
Health Authority refused to fund Herceptin despite NICE approval
and ultimately the Regional Health Authority had to force them
to do so. I can see a similar situation developing for the new
anti leukaemia drug Glivec.
A further problem in the implementation of the
National Cancer Plan is the imminent dissolution of Regional Health
Authorities. Who will actually implement the Cancer Plan, the
PCTs or the new Strategic Health Authorities? This has not yet
been clearly defined. This area of uncertainty at a time of great
change within the National Health Service and Cancer does not
bode well.
My own view is that aspects of the National
Cancer Plan are excellent. Establishment of core guideline, network
structures and key positions should have preceded release of large
tranches of money. The first tranche of money is now probably
"lost", but one would hope that the next release of
money will occur when guidelines and appropriate people are in
place to actually deliver.
PROGRESS IN
DEVELOPING THE
VIRTUAL NATIONAL
CANCER RESEARCH
INSTITUTE, ITS
PRODUCTIVITY AND
RELATIONSHIP WITH
THE CANCER
RESEARCH FUNDERS'
FORUM.
Again it is too early to define the productivity
of the National Cancer Research Institute. Certainly the establishment
of the National Cancer Research Institute and establishment of
National Translational Research centres is highly positive. How
this will interact with the Cancer Research Funders' Forum is
difficult to say. As you know the merger between the CRC and the
ICRF will have a major impact on cancer research funding.
THE ISSUE
OF CANCER
REGISTRATION AND
ITS IMPLICATION
FOR DATA
PROTECTION, GIVEN
RECENT DEVELOPMENTS
WITH THE
GMC AND THE
HEALTH AND
SOCIAL CARE
ACT.
Cancer registries are central to assessing the
outcomes of the National Cancer Plan: the productivity of any
research Institute and whether we are improving survival in all
tumour groups. It is necessary for Cancer registries to maintain
robust databases. Presumably these registries can prevent identification
of individual patients; it is my view that they should be exempt
from the Data Protection Act. In particular, if we as practising
health workers were to ask for consent from every patient for
registering them it would take a considerable amount of effort
and time and require a large amount of investment. I however wholeheartedly
support the need for consent as far as human tissue is stored
and utilised. It must be pointed out that without establishing
appropriate cancer registries or tissue banks in the UK will not
be able to audit outcomes, identity areas, which require improvement.
We will not be able to take advantage of the opportunities offered
by a revolution in human genomics, without high quality tissue
banks.
THE NEW
CANCER RESEARCH
NETWORKS
Again it is too early to comment on these as
they are very much in their infancy. The fact is that Cancer Networks
in the Northwest have yet to be fully established. I think they
are an excellent idea, however I am unclear in my own mind what
the right balance between centralised clinical research (at the
cancer centre) or devolution it to the Cancer units. There is
no doubt that participation of patients in cancer trials improves
outcomes. To undertake clinical trials however, requires a number
of resources including research nurses, data managers and clerical
staff. We need these individuals not only to gain informed consent,
obtain ethics committee approval but also fill in data sheet forms
to evaluate outcomes. A Cancer centre such as the Christie, treating
large numbers of patients, with a core staff experienced in undertaking
research trials can fulfil these activities efficiently. However,
a Cancer unit seeing small numbers of patients would still have
to deploy core infrastructure staff to undertake research activities.
This may not be cost effective. The correct balance between the
Centre and units will be key to the success of any research network.
My own view is that for the purposes of Ethics committee approval
the whole Network should be seen as one. Once responsible investigating
physicians have been identified Research nurses and data managers
should go up from the Centre to the Unit to assist in implementing
clinical trials and gathering data. This will require a degree
of co-operation and flexibility.
Dr Raj Chopra
Senior Lecturer in Haematology/Oncology
3 December 2001
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