Select Committee on Science and Technology Minutes of Evidence

Memorandum submitted by the National Association of Laryngectomee Clubs

  Head and neck cancer has a huge impact on quality of life. Although advances in surgical technique are improving functional outcomes, mortality has not improved for decades.

  NALC is aware that Laryngeal Cancer is seen by many as a lifestyle disease, and is concerned that research indicates little funding being available for head and neck as a whole, this would indicate that head and neck cancer has a "low medical and cultural status in society". Progress in reducing the numbers of head and neck cancer cases and improving quality of life for survivors is surely dependent on research into all possible causes of laryngeal cancer. Clearly, a large amount of research into new more effective therapies is required.

  NALC is concerned: that alongside the high profile anti-smoking information, research based information is not available into other probable causes. NALC feels that information directed to primary care practitioners, and the general public, should contain that evidence to ensure that improved rates of early diagnosis occur. NALC's sincere hope is that head and neck research will be given equity with the more high profile cancers, leading directly to preventative measures directed at reducing laryngeal cancer numbers, or better outcomes as the result of earlier diagnosis.

  NALC feels that clearer indications of the numbers involved should be sought with laryngeal cancer once in every 13 years, however, recent research would indicate that the overall picture of numbers and thus demographic mapping is a good deal less clear. It would also seem logical to patients to include other Primary Care practitioners in any awareness campaign. NALC also feels that statistical evidence and mapping of cases could if used effectively to pinpoint areas of concern. Research based on these findings could then be a positive base on which to base case reduction proposals.

  NALC some years ago leafleted all GP practices in the United Kingdom with the green leaflet, to enable GP's to have the then latest information on symptoms. Annex A lists symptoms considered important today.

  NALC feels that it is urgent that research is undertaken to ascertain whether patients in categories listed in Annex B could be considered at high risk, and whether screening should be introduced for patients from these categories.

  Treatment in the United Kingdom, following early diagnosis mainly focuses on radiotherapy, whilst NALC is aware of the benefits achieved by pin pointed targeting of tumours and the use of chemotherapy, we would welcome alternative treatments especially those ensuring larynx preservation.

  Recently Professor Hirano was able to demonstrate to the Voice 2000 conference, the benefits that lasers used in conjunction with cold knife surgery may provide, especially were the cancer to return. At present further treatment of carcinomas in an already irradiated area is not possible.

  Laryngeal Cancer is a survivable cancer, 90 year old Laryngectomees are not unknown, with more research into the causes, and the use of that knowledge to aid prevention, together with the introduction of more advanced techniques in treatment it should be possible to achieve not only a noticeable reduction in the number of cases but perhaps more importantly a vastly enhanced quality of life for survivors.

  Were additional resources to be made available for:

    —  more advanced "alternative means of communications"; and

    —  a greater public awareness of neck breather resuscitation, Laryngectomees lives would be vastly improved.

  NALC is grateful for the opportunity afforded by the committee to provide evidence of cancer treatment for Laryngeal Cancer in the United Kingdom, from the patients perspective.

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