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Turning the tables: when a cancer patient contributes to staff training

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Jamie Spencer

Development Co-ordinator, Macmillan Cancer Relief, Nottingham

When I developed testicular cancer in 1995, it opened the doors to a whole new range of experiences that I had certainly not been planning on at the age of 26.

When I developed testicular cancer in 1995, it opened the doors to a whole new range of experiences that I had certainly not been planning on at the age of 26.



From the moment you walk into the hospital as a patient, you enter the world of health professionals, and leave your own world behind. I often wonder why it is assumed that once we step through those doors we become an ‘expert patient’. We do not: we become isolated, fearful and have no understanding of what is about to happen.



I have had many different experiences since my cancer diagnosis. Some I would rather forget, but even these have been put to good use.



When I felt the time was right for me, I became involved in a training course that was being run at the hospital where I’d had treatment. The oncology foundation programme is for nurses and other health professionals who want to gain further knowledge about cancer and may want to take their career along this route in the future. I was involved in a question-and-answer session.



I told the participants in the programme about the treatment I had received and experienced from the time that I first stepped through the doors of the hospital - from receiving the bad news and each subsequent visit, to getting good news six months later.



I described how the bad news had been given to me: a surgeon stood at the foot of my bed, shook his head and tutted before abruptly informing me I had cancer. This approach shocked many of the nurses I was addressing. They thought this sort of poor communication didn’t happen any more.



As cancer patients, we are aware that much of what needs to be communicated cannot be altered to a great extent. However, things can be done differently to lessen the impact.



The same can be applied to the everyday care of a cancer patient. For example, during my chemotherapy I became very sick and the smell of food made me ill. After treatment I could not eat for the rest of the day. Whenever I was in a side room, the staff would shut my door if possible to stop the smell of meals drifting in. This small gesture made life a little easier.



I have run a section of the oncology programme for six years, and have received positive evaluation. The nurses say it is an invaluable part of the course.



In October last year another cancer patient and I took part in the programme from start to finish for the first time. Judging from the feedback, this went well. We were able to give another perspective - the patient’s - to almost everything being said, and we all found this useful.



We hope we have encouraged the nurses we met to broaden their thinking about patients and how they feel. We also hope their working practices may change so that we can all be treated as equals through being given clear choices on treatments and care, being asked our views, being kept informed and being supported.



During the eight years since my diagnosis, my life has turned around and I have become heavily involved with the wider cancer arena.



Although I qualified as a quantity surveyor, I have recently become involved as a volunteer with work carried out by CancerVOICES, a joint initiative by Macmillan Cancer Relief and the Department of Health. The scheme helps people with cancer to gain Course facilitator and build their knowledge through education about the NHS and cancer services.



It was then fantastic to apply for, and be offered, a post with Macmillan Cancer Relief. I started this year as a development co-ordinator for the East Midlands and Northern Region, working with and helping to support self-help groups, Cancer networks and CancerVOICES.



Despite the shock and fear associated with developing cancer, being able to communicate with health professionals about the patient experience made it possible to turn this into a positive experience, of benefit to staff and other patients, as well as myself.



- The Nottingham City Hospital Oncology Foundation Programme provides training for nurses and other health-care professionals working with cancer patients. The course lasts 12 weeks and covers subjects ranging from cell biology and the principles of screening to breaking bad news and the social, psychological, economic and spiritual implications of a cancer diagnosis. If you would like more information on the programme, email course facilitator Alison Freemantle at:
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