WEDNESDAY 21 JUNE 2000

MRS MARGARET O'DONOGHUE

  552. Good afternoon, ladies and gentlemen. Welcome to the Science and Technology Select Committee. This afternoon we are attempting something we have never done before. Generally when the Select Committee meets, we have one set of witnesses, sometimes two, never generally more than three and that is a rare occasion. As you will know, we are doing an inquiry at the present time into cancer research. So many people wrote to us saying they would like their views known on cancer research or they had personal experiences that they wanted to convey to us, that we decided to have an innovation this afternoon. The innovation is that we have invited 20 sets of witnesses to come to speak to us for five minutes each. May I say how very pleased we are to see you? I imagine many of you I am looking at now are witnesses; a few may be members of the public and the public are certainly welcome to take the seats at the rear if they wish to do so. Because this is a new innovation we on the Select Committee may be a little nervous and it is just possible that some of you may be a little nervous too. If you are, we are all nervous together and we shall all try this experiment together and see how it works. We are not here to trick you in any way at all. We are here to listen to you. We are here to learn your views and for you to assist us in our inquiry and our report, which will be presented to the House of Commons at the end of July. As a matter of interest, the proceedings we have undertaken so far have all been filmed by the BBC to prepare a programme for BBC2 which will be transmitted on Saturday, 29 July, a Saturday night, at the strange time of 6.40 pm. I told the BBC they are doing it when everybody is getting ready to go out for Saturday night so that no-one will watch it! We are very pleased that the BBC have taken our inquiry seriously. They have been to the United States and Canada with us, they have been to Finland with us. They have been to hospitals in this country when we have conducted our inquiry and the filming which will be going on this afternoon will also be available to the BBC for them to put into their programme. Clearly not all the 20 witnesses will be in the programme, but some of you will be, so perhaps you would like to watch that programme: BBC2, 6.40 pm, Saturday 29 July. May I just introduce people around the table with me? On my left is the Clerk of the Committee and on her left is her assistant. To our right at the table over there are our advisers, scientific and medical advisers, specialists in cancer, who help us to understand the evidence we receive, help us to think about the questions we should ask and are generally very helpful to us, bearing in mind that we are Members of Parliament and not medical specialists. It so happens, however, that all of us around the table are scientists or have degrees in technology. May I introduce the Committee Members this afternoon? On my extreme right is Dr Desmond Turner, who is a scientist, Dr Ian Gibson, scientist, Dr Brian Iddon, scientist, myself, Dr Michael Clark, scientist; all four of us have PhDs in chemistry. Dr Lynne Jones who is a biochemist and Dr Ashok Kumar who is a technologist and engineer. Although we are not medical scientists, we are scientists and we hope that gives us a better insight into the problems we are investigating. As far as the proceedings are concerned, I regret to say that I have to be very strict on five minutes per person, otherwise we shall never get through the 20 sets of witnesses. To help the witnesses, the Clerk and I have a little bleeper here and we shall at the end of four minutes turn the red "Toblerone" so you can see you only have one minute left. At the end of that one minute we shall hear a bleeper and I shall have to call you to halt. I am afraid I am going to have to be very severe, even if you are in the middle of a sentence; maybe I shall let you finish a sentence but I cannot let you finish a paragraph otherwise we shall never finish this afternoon. I hope, when you see the red lozenge go up you will begin to bring your remarks to a close. If you finish early, after three or three and a half minutes, then that would give us the opportunity as Members of Parliament from this Committee to ask you questions. We would hope to ask you very brief questions and we hope you would give us a brief answer so that we can still stay within the five minutes. If you finish early, your time will still be used on your subject because we shall ask you a question about it. That is all I can tell you by way of introduction. It is now just gone five minutes past four and we shall start with our first witness, Mrs Margaret O'Donoghue. I am so sorry you have been sitting there for such a long time while I have been talking, but we should very much like to hear from you. You are going to talk about Cancer Help and you come from Preston.
  (Mrs O'Donoghue) Yes, I do. My background is in nursing. I am actually a Director of Services of a charity, Cancer Help, a voluntary day care service. We work in collaboration with the NHS but offer complementary therapies along with that, particularly psycho-social care. We have discovered this is extremely important to the patients. Patients today are very aware of what is going on around the world. We have 500 patients visit the house monthly and most of our patients have access to the internet. It is therefore important that we have honesty and collaboration with patients. I speak from a patient's point of view. The anxiety that the patient experiences at the time of diagnosis when they are aware that the most important thing for them is that the earlier the treatment starts the better the chance of cure. It is important that patients are taken as partners in their own care. The statement I submitted alluded to that. It is impossible for patients to give informed consent if they are not treated as equal partners with honesty. They actually then become a partner in their care. With the information they are given, they then are able to make an informed consent. It is important even if we are doing trials and we are not at that time particularly aware of the outcome of the trials that we should at least be honest with the patients and give them that brief. It is then up to the patient if they decide to participate and that helps us and it relieves the anxiety and the trauma that the patient actually suffers. The majority of patients wish to be in charge of their own care and to be a participant in the treatment. Too often I hear from patients: "Do they not think I have a brain? Am I not allowed to know what is going on?". I actually had two patients on my return yesterday who said those very words to me. It is: "Why do I not get answers to my questions? I want to know what the outcomes will be". It is a desperate state. Probably when you get to the trial stage, all other treatments have failed and you have a recurrence of the disease. It is particularly important for patients to be aware of that. It is easier for the voluntary sector to be collaborative in this way because unfortunately patients who are receiving treatment within the NHS are very, very reluctant to complain. Unfortunately they feel that treatment may be denied or they may have an aggressive statement upon their notes. That too is a practical consideration, where the voluntary sector could be particularly helpful in an advocacy role with patients; and that is what we do; we work very, very closely with the NHS locally which has now established a cancer unit. I am able to call up the consultants and speak to them on behalf of the patient. Very, very often the patient then is received the same day into the unit and that is so important. I should like to leave the Committee with those thoughts and perhaps they may like to think about involving the voluntary sector in a collaborative role with the NHS on research trials.

  553. Are you saying that in the Preston and District hospitals most of the consultants are not upfront with their patients? Is that what you are saying?
  (Ms O'Donoghue) That is unfortunately the illustration that I have from patients coming to the house.

  554. Yesterday when we visited Belfast, a separate room was set aside where this kind of counselling was given actually in the area where the patients were treated. Does that happen anywhere in the Preston District?
  (Ms O'Donoghue) No. Prior to establishing the cancer unit I actually was an oncology nurse. With the visiting consultant from the Christie, we had a room where we used to take the patients and sit with them and explain what had gone on in the cubicle where they were given the diagnosis and everything else leaves the patient.

  555. Have you put this point to the oncologists at Preston?
  (Ms O'Donoghue) Yes, we actually had a room. I was part of the three-year planning for the cancer unit and I had a room set aside there. Unfortunately when the unit opened there was no community involvement with staff.

  Chairman: Thank you very much indeed. You presented your evidence very clearly and thank you for being our first witness.