I am a kidney cancer patient and co-founder and Secretary of Kidney Cancer UK, an organisation set up in January of this year to support kidney cancer patients and carers. One of our main aims is to collect and make available reliable information about the nature of the disease and treatment options. Sadly, many patients are not provided with such information by their local hospitals. At worst, some patients are simply told that there is nothing that can be done about kidney cancer once it has metastasised. Because there are only a few kidney cancer specialists in the UK, many patients do not have the opportunity to see an expert. In some cases they are never told about, let alone offered, access to promising clinical trials and innovative treatments. This was my own experience when I was diagnosed in September 1998, and that is why I have spent the last 19 months doing my own extensive research on kidney cancer and its treatment.

  There are two major problems with kidney cancer. The first is late diagnosis. I myself went to see several GPs over a period of four years with persistent physical symptoms, but had no investigative tests for cancer. By the time I was diagnosed, after blood loss in my urine, a tumour of about seven cms in diameter was discovered on my left kidney and I was also found to have a large number of lung metastases. My experience is fairly typical of kidney cancer patients. Therefore, there is an urgent need to apply scientific knowledge more effectively to the early diagnosis of kidney cancer. If kidney cancer is detected before it metastasises, there is a real chance that the patient can be cured.

  The second problem is that kidney cancer does not respond well to conventional cancer treatments, and therefore more research is needed into innovative approaches, especially immunotherapy. After a patient has had his or her kidney and primary tumour removed by surgery, it is often necessary to deal with metastases that have appeared in other parts of the body. In general, chemotherapy and radiotherapy have little impact on metastatic kidney cancer. This means that if doctors do not have the knowledge or resources to apply biological therapies, the prognosis for any kidney cancer patient with metastases is poor. Relatively few such patients survive more than five years and many die within the first year or two.

  In previous evidence to this committee, Professor Peter Selby expressed the hope that in the next ten years there will be more research into biological cancer therapies, including the use of vaccines. I would like to endorse this statement. The development of scientific knowledge in these areas and its translation into clinical practice will undoubtedly be of benefit not only to kidney cancer patients but also to other cancer patients for whom conventional treatments prove ineffective or inappropriate. The concept of stimulating the patient's own immune system to recognise and eliminate cancer cells—or at least to inhibit the further progression of the disease—has a long history, and if we could follow through this approach to fruition it would reduce our dependency on the use of chemotherapy and radiotherapy, with all their unpleasant and potentially harmful side effects. Let me stress again that for patients with metastatic kidney cancer, immunotherapy offers the only hope of long-term survival. However, access to immunotherapy, including vaccine treatment, is still very limited in this country.

  The UKCCCR renal cancer group has expressed concern that many patients who would qualify for clinical trials are not given the necessary information and support to join those trials. I have to say that in some cases, the doctors themselves do not seem to have this information. This is why, increasingly, patients like myself are doing their own research and presenting their doctors with information that they have obtained from libraries and the Internet. Because kidney cancer is one of the rarer forms of cancer, the average UK hospital does not see many kidney cancer patients each year, and most oncologists dealing with kidney cancer combine this specialisation with the treatment of other forms of cancer. They simply do not have the time, resources or support staff to devote themselves to kidney cancer research, and they do not see enough patients to develop their practical understanding of the disease. The main conclusion I draw from this is that for many kidney cancer patients, going to their local hospital will not lead them to the best information or the best treatment. What we need is a small number of centres of excellence for the treatment of kidney cancer, and a system that ensures that all patients can gain access to these centres.

  I have raised a number of important questions to which I hope the committee will give serious attention. I am grateful for the opportunity you have given me this afternoon to discuss the concerns of kidney cancer patients with you. On behalf of Kidney Cancer UK, I have also prepared a file of relevant information and research papers that I believe you will find helpful.