WEDNESDAY 21 JUNE 2000

MRS MAUREEN NEWTON AND MR TOM NEWTON

  591. I now call Mrs Maureen Newton and Mr Tom Newton from Cancer Resource Store.

  (Mrs Newton) Thank you, Chairman. I have just completed a piece of research entitled The Quality, Appropriateness, Timeliness and Accessibility of Services from the Perspective of Patients with Cancer and their Carers. I should like to raise seven concerns with the Committee. I shall give a brief account from my research to illustrate how they affect people. The first is that there needs to be a more holistic view of people with cancer, rather than the narrower clinical view. Qualitative research is not prioritised. Current medical research focuses on clinical outcomes measured by tumour response, remission and the impact on survival, which does not take into account issues relating to quality of life throughout the treatment, trajectory and beyond. One patient said: "The radiotherapy was distressing. There was no assistance in coping or managing the treatment side effects, which were extensive burns requiring crutches to walk. No-one said we should be doing something. No liaison between the three groups: doctors, nurses and radiotherapy staff. I was told to expose the area and fan. It was only when I refused treatment that they brought the cancer nurse specialist who suggested a special type of dressing. That was the first night's sleep I had for weeks. Why did no-one tell me sooner?". My second point is that there should be more research on the impact of living with cancer. Many people are isolated once they leave hospital and feel let down by doctors and nurses. One patient said: "We had no district nurse, nobody. We didn't know if this was right or not. The GP said it just takes time but we had no-one else to ask. My wife had to go part time to look after me. We didn't know if we were doing right or wrong. It was a terrible time. I expected some support. The whole family went through it". His wife said: "I went to the cancer charity shop to ask if there was anyone to talk to but they only sold clothes and couldn't help me. I bought a blender but he still wouldn't eat so I bought packs of supplementary diet drinks from the chemist because I didn't know about the vitamins and I was worried". They could ill afford the £2 cost of each drink and nobody told them they were available on prescription. My third point is that we must establish what the needs are at different stages of illness and what services are in place to meet those needs. One patient comments: "The GP came out to see me. The district nurse came to take the stitches out and left a card in case I needed her in the future. It did not occur to me to ring her about my dietary problems because she came so soon after I came home and they had not developed yet". Another patient said: "I needed help with food and rent. Having to start fighting when you are at a low ebb was horrific. Sitting in the Benefits Agency was a very distressing experience; one and a half hours in a smoke filled room. I was frightened. I had just had cancer. We had never been on benefits before so we didn't know where to begin". My fourth point is that there is a need for much more patient/carer participation, but not just from the middle class pressure groups. This research has identified that many people are isolated with cancer and do not get support from any agencies, be they statutory or voluntary. Therefore their views will never be captured unless they are identified through qualitative research, for example using data from cancer registries. My fifth point is that ordinary people need empowering to give their views. One carer said: "Nobody seemed to want to know how I was. Nobody ever asked me if I was all right or if I needed anything. I didn't have one person to talk to". My sixth point is that there needs to be more focus on the important role of primary care. Some patients perceive that only the consultant can help them. One patient said: "Niggling pains are bothering me a bit but not to moan about. I won't go to the GP because I go to the hospital in December. I've had the pains since early summer". My seventh and final point is that patient education programmes are important and may help relieve pressure on other concerns. For example, the "I can cope" programme which we hope to run in the autumn may enable greater understanding of both cancer and the professional maze that patients and their families say they encounter. In addition to this we will teach strategies for communicating with professionals more effectively, particularly for those who may not easily be able to verbalise their needs in their short surgery or clinic time. Interacting and participating with professionals may effectively help people to make important choices about their treatment, management and care. It is also important to support carers and families with the information they need about the health and medication needs of the person for whom they are caring. This proactive and interactive approach may lead to a great compliance with treatment and so produce the desired improvement in clinical outcomes. However, if you are not part of a university or recognised medical research team it is highly unlikely that you can get funded. Thank you for giving me the opportunity to respond to the Committee.

  Chairman: You are most welcome and thank you for being so punctual with the evidence which you have given admirably well and the seven points will be remembered by us. Thank you very much indeed.