WEDNESDAY 21 JUNE 2000

MS VIVIEN REED AND MS JEAN FRASER

  568. I now call Ms Vivien Reed and Ms Jean Fraser of the National Association of Laryngectomee Clubs. Thank you very much indeed. We look forward to your evidence.

  (Ms Reed) 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. The National Association of Laryngectomee Clubs 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.
  (Ms Fraser) NALC feels that clearer indications of the numbers involved should be sought. Patients are told that a primary care practitioner would only see a patient with laryngeal cancer once in every 13 years in general practice. 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, pinpoint areas of concern. Research based on these findings could then be used as 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 which we enclosed in your pack, to enable GPs to have the then latest information on symptoms. We have included up-to-date symptoms in Appendix A. NALC feels that it is urgent that research is undertaken to ascertain whether patients in categories listed in Appendix B could be considered at high risk and whether screening should be introduced for those patients from those categories. Treatment in the United Kingdom following early diagnosis mainly focuses on radiotherapy. Whilst NALC is aware of the benefits achieved by pinpointed targeting of tumours and the use of chemotherapy, we would welcome alternative treatments, especially those ensuring larynx preservation. At the recent Voice 2000 conference in Newcastle Professor Hirano of Kuwana University in Japan was able to demonstrate the benefits 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; ninety-year-old laryngectomees are not unknown. With more research into 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 communication and a greater public awareness of neck breather resuscitation, laryngectomees' lives would be vastly improved. NALC is very 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. I know I do not sound like a patient; my husband is at the back and I am reading his words.

  569. Thank you very much indeed. Could you just tell us when your association was founded, how national it is and the number of members it has?
  (Ms Reed) It was founded in 1976. We are an associated charity of Macmillan Cancer Relief and they provide about 95 per cent of our funding; the other 5 per cent is reliant on public donations. We have 97 clubs situated throughout the UK; that includes Scotland, Ireland and Wales. We have about 5,000 members who are not only patients but also from professional bodies as well.

  Chairman: That is such a good answer everyone will think I gave you that question before you came! Thank you very much indeed for your evidence.