Patient awareness

When it comes to cancer, why do the British present late? Is it fear of the unknown - the doctors, the treatments, the imagined (or real) pain, not wanting to worry loved ones?


Patient awareness is a very big deal. Over the last 20 years many once taboo subjects have been brought into the public arena, with some positive health benefits such as mental health, testicular cancer, female genital mutilation. Angelina Jolie has recently contributed by opening up the discussion on breast cancer risks and prophylactic mastectomy and has received well-deserved plaudits for so doing.

Every month seems to have several key topics to promote. June is home to Motor Neurone, Homeopathy and Glaucoma Awareness weeks, as well as Cervical Cancer Screening (9-15th). Two events in the last week have made me think about patient awareness of health issues, particularly in relation to cancer.

Last week our locality protected learning time focused on 'Cancer' and this was reinforced when I was interviewed this morning by a journalism student about the Cervical Screening Programme. I had thought the message was reaching the target audience, but the budding journalist at 21 felt she didn't know very much about it. So if well motivated, educationally able, English-speaking and relatively affluent women don't know, what hope for everyone else?

The great news from the PLT was that, as an area, we're pretty good at spotting those red flags and sending them in. An RCGP-backed audit showed that 60% of all cancer diagnoses in our locality come through the two-week urgent referral channel (compared to a national 47% average). Only 10% came through A&E. But the big disconnect for me (most likely because I am a medic) is the people who suspect they may have something wrong, but don't even come through the door.

Celebrity news stories, screening and advertising campaigns have all helped, but still UK figures lag behind Europe. The medical oncologist presenting at the meeting revealed that if the patients who died within 12 months of their diagnosis (those, who have presumably presented very late) were discounted from the statistics, our survival figures would match those in Europe. So why do the British present late? Is it fear of the unknown - the doctors, the treatments, the imagined (or real) pain, not wanting to worry loved ones? I have seen suggestions that it's part of our island or wartime culture - stiff upper lip, don't be any trouble to anyone, sort of thing. I don't believe it is anything that simple. The Inverse care law would also imply those who need screening most (deprived areas, poor education attainment or learning disabilities, higher risks) will access it less and research bears this out.

However, I want to suggest another possible contributing factor; that British culture does not support us dealing positively with death. Witness the furore around the Liverpool Care Pathway and the right-to-die debates. To many, hearing that 'you have cancer' sounds like a death sentence, one they do not wish to face. We in the UK are not brought up being comfortable with bad news and this begins right from childhood. A fact brought home to me when reading the amusing and thought-provoking 'French children don't throw food' recently. The author, Pamela Druckerman, noted that French story books for children rarely have a happy ending and conflicts aren't easily resolved. Compare that to English-speaking books, where 'and they lived happily ever after' is common.

Perhaps people do not come because they do not want to have their worst fears confirmed. They would rather cling to the hope that they are wrong, and will live happily ever after, after all.

This month SIGN released guidance on follow-up of survivors of childhood cancer and we have updated our articles on leukaemia, as a consequence. We also produced new articles on Clinical Commissioning Groups and QOF indicators for 2013-14. A full list of our updated content is available at http://patient.info/content-updates.