Thank you for giving me the opportunity to present evidence to the above Committee on 21 June 2000, at the extra oral evidence session. My background is in community nursing first as a District Nurse then as a Macmillan Nurse. In 1990, I developed the concept for the first nurse-led community Cancer Information Centre of its type in the UK. I acquired the funding to pilot this in 1992 and the services at the Cancer Resource Store are the result of all the lessons learnt.

  We have relocated, thanks to a recent grant from the National Lottery Charities Board, to the city centre of Liverpool, where we will be accessible to many more people. We will be providing professional guidance on cancer care, information, clarification, education and support to people affected by cancer.

  I have just completed a major piece of research into the real needs of patients and carers, which has been submitted for a Master of Philosophy degree, June 2000 entitled:

"The Quality, Appropriateness, Timeliness & Accessibility of Services From The Perspective of Patients with Cancer and Their Carers".

  The nature of the concerns I wish to raise with the Committee are:

1.  There needs to be a more holistic view of people with cancer rather than the narrower clinical view.

2.  More research on the impact of living with cancer.

3.  Establishing what the needs are at different stages of illness and what services are in place to meet those needs.

4.  There is a need for much more patient/carer participation but not just from the middle class pressure groups.

5.  Ordinary people need empowering to give their views.

6.  Needs to be more focus on the important role of Primary Care.

7.  Patient education programmes are important may help the pressure on the above.

  I will give a brief account from my research to illustrate how they affect people.

1.  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 the most distressing, 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 (Jelonet). That was the first nights sleep I had had for weeks. Why did no one tell me sooner?"

  Or for those people who survive and live with the fear and uncertainty of recurrence,

  Expressed by another patient who said:

"Suppose it comes back. I think they should give you scans after so many months, they say its all clear but there is no way they could know that because I don't go for any kind of scan".

2.  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. Nobody told them they were available on prescription.

3.  ESTABLISHING WHAT THE NEEDS ARE AT DIFFERENT STAGES OF ILLNESS AND WHAT SERVICES ARE IN PLACE TO MEET THOSE NEEDS

  One patient commented:

"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 in the benefits system so we didn't know where to begin".

4.  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 using random data from cancer registries.

5.  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 alright or if I needed anything. I didn't have one person to talk to".

  Another carer said:

"I went to see a psychologist who said my angry feelings were normal, before that I thought I was just wicked".

6.  NEEDS TO BE MORE FOCUS ON THE IMPORTANT ROLE OF PRIMARY CARE

  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 clinic in December. I've had the pains since early summer".

  Another said:

"The GP was great but it's a surgery and time. It would have taken too long to sit there and pour out all sorts; he had already given us a half-hour when he was referring my husband to hospital. All I really want was his support to stay off work; I didn't have a place for me to talk".

  Another said:

"I haven't seen him (GP) since the operation two years ago".

7.  PATIENT EDUCATION PROGRAMMES ARE IMPORTANT AND MAY HELP RELIEVE THE PRESSURE ON THE ABOVE CONCERNS

  Education Programmes for example the "I can cope" programme which may enable a greater understanding of cancer and the professional maze that patients and their families encounter. In addition to this, strategies for communicating with professional more effectively particularly in the short clinic time. Education programmes may also provide much needed support and guidance at different stages of illness and enable people to feel in control.

  I hope I have demonstrated that "Qualitative Research" is essential particularly in examining daily living activities and quality of life if we are to support patients and their carers appropriately. 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.

20 June 2000