WEDNESDAY 21 JUNE 2000

MS GILLIAN SPEED

  574. I now call Ms Gillian Speed from the Sheffield Breast Cancer Research Fund.

  (Ms Speed) Good afternoon. The Sheffield Breast Cancer Research Fund is part of the Sheffield Breast Care Support Group. I had breast cancer six years ago which was successfully treated by surgery, chemotherapy and radiotherapy. I then went into a trial for the drug Tamoxifen, which I was to take for two years. At the end of that time my consultant suggested that I should carry on with the drug for a further three years. However, last year I developed problems with my back and tests showed that the breast cancer had returned in my spine. This was treated by radiotherapy and I was taken off Tamoxifen and prescribed a different drug, Arimidex. At present I am being treated at the Cancer Research Centre at Weston Park Hospital in Sheffield with bone-strengthening drugs to try to prevent further spread. I should like to make three points. As a patient, I have become very interested in cancer research and had not realised prior to my illness just how many different research charities there are and how many different bits of research seem to be taking place. I feel there could be great benefits to be had by bringing all these under one umbrella, both from the research point of view and also from the fund-raising side. I should like to share the concern of many of our group that cancer research appears to be very fragmented, many people doing their own different thing in different places. There seems to be a need for a more co-ordinated and well-publicised approach. However, I was actively involved in setting up The Sheffield Breast Cancer Research Fund as a way of enabling breast cancer patients in Sheffield to donate to local research. Many women want to feeL they are helping women in their own locality and to give something back for the usually excellent cancer services we have in Sheffield. Secondly, regarding clinical trials, in retrospect I am very glad that I was drawn to take Tamoxifen as my consultant has assured me that the cancer would have returned earlier if I had not been on that treatment. This shows the dilemma for patients dealing with life or death issues in their lives, being asked to make well informed and unbiased choices in their treatments. Many people offered something which may or may not help them will, like me, opt to try it, whereas others will always choose to stick with the tried and tested methods of treatment. My third and most vital point concerns the psychological impact of having cancer. I am a patient representative on the Culyer Funding Team looking at various aspects of cancer research. There seem to have been many research projects looking at the clinical aspects of cancer treatment and the effectiveness of clinical trials, but I am not aware of much research into the psychological treatment of cancer at all. My own experience was that this aspect of care was and still is sadly lacking. Eventually I suffered a period of deep depression requiring hospitalisation. Basic counselling, where I could have expressed my hidden fears to someone who was not concerned with the medical aspect of my treatment, was never offered and I continued pretending everything was all right for nearly a year after my original diagnosis. I would welcome more research into the emotional effects of being diagnosed with cancer in today's society as I feel cancer research should cover all aspects and not just the medical side, which is usually put forward by drug companies and not by users or patients. Thank you for inviting me today.

  Chairman: Thank you very much. You leave us a minute and a half for questions.

  575. You comment on the apparent fragmentation and lack of coordination in cancer research in this country which is an issue which the Committee has been very interested in. You may or not be aware that there are proposals, for instance, for a National Cancer Institute in Britain. Where do you think that could leave voluntary organisations? What is the role for charitable organisations such as yourself?
  (Ms Speed) We would raise our money and send it on to the National Cancer Institute. People have a soft spot for cancer. Some people like to give it to the local research because we know it is taking place in our city, but if that were seen to be part of a national programme of research, we would still want to raise funds for that.

  576. You would not want to earmark it for a specific type of project?
  (Ms Speed) I do not think so. Certainly our group would be interested in breast cancer research.

  577. When you receive research applications how do you go about selecting the successful ones who are going to use your money?
  (Ms Speed) We actually send it straight to the Royal Hallamshire in Sheffield because the doctor doing the research there is one of the patrons of our group and has helped set up the group and helps keep it running.

  578. Could you tell us about what you do as a patient representative on the Culyer Funding Team?
  (Ms Speed) I go to their meetings. They ask for users' views and I have found it very interesting. They are nearly all medical people on there and do not see it from the same point of view as patients do. I felt very valued there and able to express what I feel about being asked to be in a clinical trial. I have also learned a lot about ethics committees which as a patient I knew nothing about. I never thought that it went through all that.

  Chairman: Thank you very much indeed. Thank you for your evidence and thank you for coming from Sheffield to see us.