Select Committee on Science and Technology Appendices to the Minutes of Evidence


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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