The Prostate Cancer Charity reveals the results of its First National Survey

The Prostate Cancer Charity reveals the results of its First National Survey

By Martha Kerr
Many men are being told they have cancer alone, insensitively and without advice about treatment choices and their side effects, a major survey has found.

The Prostate Cancer Charity’s First National Survey asked over 1,000 men diagnosed with prostate cancer, within the last three years, about their care and found that one in five was given his diagnosis insensitively - some were even told by phone or by letter.

Over a third of men were not given access to a specialist nurse to discuss their diagnosis, 43 per cent of men were not given any written information about the disease, treatments and side effects, and nearly a quarter of men who were alone when their cancer diagnosis was broken to them, wished they had had someone with them.

The survey asked men about their experiences of the NHS, before and after diagnosis, and the support they received. The disturbing results have highlighted serious gaps in the care men with prostate cancer are given - with some men left to cope almost on their own and others fully supported by an excellent NHS team.

The Prostate Cancer Charity Chief Executive, John Neate, said: “Many men singled out doctors and nurses who gave them fantastic care but all too often the comments described men’s anger and frustration with an NHS inadequately resourced for proper prostate cancer care - preventing health professionals from giving men with prostate cancer the time, care and information they need.

“It’s disgraceful that so many men with prostate cancer still do not get appropriate care and support. One man told us how he received a letter on a Saturday telling him he had cancer, with a help number that was not available until the following Monday. Another man commented: ‘Although I had disgraceful attention, I have been lucky with no serious effects’.

“These men are not whingers with nothing better to do than complain about the NHS. They are real men, fathers, grandfathers and sons, who have been asked a range of probing questions about their care. All too often their responses are deeply distressing.

“The Government must make prostate cancer a more urgent and convincing priority and ensure that men with prostate cancer, wherever they live, are cared for with the dignity and respect that all cancer patients deserve. The Government must now seize the opportunity to make this the ‘Parliament for Prostate Cancer.’ The Prostate Cancer Charity will not tolerate men being offered a second-class experience any longer.”

The First National Survey results will be launched at the National Prostate Cancer Conference in London today. It also found that 26 per cent of men were not given the opportunity to decide which treatment was best for them, and 24 per cent of men did not feel that the hospital specialist or nurse gave them enough information about the treatment choices available.

Almost one in five men (19 per cent) was not made aware of the side effects of different prostate cancer treatments, which for many men include impotence and incontinence and can be very debilitating.

John Essex, 62, a picture restorer from Tring, Hertfordshire was diagnosed with prostate cancer in 2002.

John says: “I went to a specialist cancer centre and was amazed to find that they had no idea that hormone treatment can cause breast enlargement in men and loss of libido. My side effects were very disturbing and I felt terrible but I came up against a blank wall and couldn’t find anyone to help.

“Despite hormone treatment being one of the most common treatments for prostate cancer – it seemed to me that no-one had ever had my side-effects before and there was no-one to talk to. I felt very alone.”

Chris Hiley, author of the report and Head of Policy and Research at The Prostate Cancer Charity added: "Cancer care is not only about the headlines, firing ever more people through the door of the hospital ever more quickly, with guaranteed access to the right drugs - it’s about the right nurses in the right place with the right facilities, training and attitudes. It’s about getting multi-disciplinary teams working well and those good relationships spilling over into the patient's lap so that they get the best information and support possible.

“If you'll forgive an old-fashioned nurse a distinctly out of fashion view - it's about allowing the NHS to love its patients. Doing the right thing isn't hard, but we seem to have forgotten how to in relation to many men with prostate cancer. It’s not rocket science, but sometimes getting a man into orbit might be easier than helping him make a fully informed choice about his cancer treatment.

“We must improve all men's experiences of health care choices. Help them demand attention. Change society's views so men's entitlement to tailored health care is as respected as women's,” she added.

Source: http://www.prostate-cancer.org.uk/