APPENDIX 9
Memorandum submitted by the National Association
of Laryngectomee Clubs
NALC would like to bring to the attention of
the committee our concerns that due to lack of trained staff,
premises and up to date equipment, delivery of the NHS Cancer
Plan is being compromised. This is particularly apparent in the
field of radiotherapy. We were interested to hear Dr Girling,
Medical Research Council, raise with the "Britain against
Cancer" conference their concerns that lack of radiotherapists
was negating plans for pilot research into more accurately targeted
therapy. This mirrors exactly concerns that have been raised by
professionals and patients in the Northern Cancer Network where
waiting times for radiotherapy for Head & Neck patients became
dangerously delayed, due to lack of resources.
Realising that even if funding and premises
were to be made available to improve the situation there would
be difficulties in staffing this unit, we began to ask for the
re-instatement of the School of Radiology at Northumbria University
in Newcastle to ensure staffing to recommended levels was achievable.
NALC has been frustrated in its aim by a lack of willingness by
those responsible to discuss our proposals.
NALC has seen little evidence of basic research
into all possible causes of laryngeal cancer, although we noted
Professor McVie's, at "Britain against Cancer"
response that Birmingham Network were undertaking research into
Head & Neck Cancer. Whilst we recognise the benefits obtained
by outcome and procedures research, NALC has an interest in prevention
and early detection, which, does not appear to be being researched
at the present time.
NALC feels that cancer registration should lead
to statistical research being undertaken which could assist in
plotting environmental risks, as contributory factors in laryngeal
carcinomas. Similarly there could be benefits from statistical
data to enable genetic fingerprinting of the relevant genes. NALC
is aware of the current difficulties being met as the result of
data protection legislation. This is beginning to adversely affect
levels of support that established Laryngectomees wish to give
to pre and postoperative patients. NALC recognises that if the
voluntary sector experiences difficulties in the social context,
the acute problems that may be faced as the result of medical
ethical processes may be daunting. NALC is concerned that these
problems may affect the transition arrangements required by the
Health and Social Care Act, resulting in a reduction of standards
of care particularly in the field of assessment and equipment
provision.
6 December 2001
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