Image: "Des Glaneuses", Jean-François Millet, Oil on Canvas, Musée d'Orsay, Paris

Everyone is haunted by stories of cancers that are diagnosed too late. This week guidance from NICE aimed to help with what it called ‘a symptom based approach’ for general practice in England. Promising to bring together lists of symptoms for 37 common cancers and advising doctors on when to order specific tests for different age groups and with what urgency, the guidance appeared at first sight an attempt to correct for a deficit in GP diagnostic abilities. In the accompanying press release it was suggested that better diagnosis could result in 5000 fewer deaths from cancer every year, a reduction of 50%. Like other products of evidence based medicine, the guidance promised to improve ‘consistency’ between GPs. Though starting from a deficit, it imagined the primary care doctor as ready to learn from using the guidance. And fair enough. We were told the average GP would see only 8 new cancer cases a year. In that situation it would be hard to learn from experience alone.

At second glance the document appeared much more political, as the financial implications of the guidance became clearer. GPs were not only being reminded of the different possible symptoms that might mean cancer, they were also being offered the chance to refer more quickly to specialists (within 2 weeks or even 48 hours) and have direct access to CT scans and endoscopies. This was more contentious than a simple decision aid. Though NICE said on the one hand that it was worth spending money to catch more cancers early, and on the other that early detection saved later spending on costly treatments, charities and GPs expressed doubts about whether the guidance could be implemented in the cash-strapped NHS. Dr Maureen Barker, the chair of the Royal College of General Practice was quoted by the BBC warning that hospitals might not be able to cope with demand for extra scans.

“It would be regrettable if something that was so well-intentioned resulted in patients being worse off.”

A third look, and I started to wonder about other unintended consequences that might follow from the guidance, particularly how it might be used by patients. The guidance included sections for patients describing symptoms that might indicate cancer. These worked hard to allay any anxiety that might result from more rapid investigations:

“Being referred to specialist does not mean that you have cancer. Very few people who are referred to a specialist actually have cancer. However it is important that you are checked quickly to find out. If you do have cancer, spotting it early can mean treatment is easier and more likely to be successful.”

Like Julia Lawton and colleagues in their fascinating discussion of location of care in diabetes, the authors of the NICE guidance knew that being referred out of primary care might well be read as a sign of the seriousness of a condition. This invoked a patient who was potentially anxious and needed reassurance.

But the guidance itself might also support a more assertive consumer-patient – who could attend a clinic armed with a list of relevant symptoms and ‘appropriate’ responses from the GP.

“If you have ever smoked and are 40 or over you should also be offered a chest Xray, which should be carried out within 2 weeks, to check for lung cancer or mesothelioma if you have a cough, shortness of breath or chest pain.”

“If your child or a young person has bruising that isn’t caused by anything else (such as an injury) or an unusual paleness to their skin (pallor), they should be offered a blood test, which should be done within 2 days, to check for leukaemia.”

Some of the guidance told you exactly how the doctor should start to investigate:

“If you have a skin lesion and your GP has assessed it (checking its shape, size, any change in size and any other features) or carried out a skin examination using a special magnifying tool called a dermoscope, and thinks that a type of skin cancer called melanoma might be possible, you should be offered an appointment to see a cancer specialist within 2 weeks.”

But what would happen if you took your symptom into the surgery and didn’t get the X-ray or blood test that quickly, or at all? Or if the GP failed to check the size of your mole with the appropriate tool? Though the authors thought about the dynamics of the situation in which a patient brings a symptom, they appeared not to have considered the dynamics of a clinical encounter in which that symptom is accompanied by the guidance itself and the expectations it engenders.

Though I can see that people may use NICE guidance to create pressure to increase health spending in particular areas like cancer diagnostics, I’m uncomfortable with how the guidelines might make the patients more conscious of the gap between ideal and reality. And I suspect that such acts of interference in patient/doctor relationships will create anxiety just as surely as a specialist referral.

(Such unintended consequences are just a matter for conjecture at the moment. But if anyone wants to investigate, the guideline group identified a research need in the area of ‘patient experience and patient information needs in the cancer diagnosis pathway’. They want qualitative research to investigate these areas, so hopefully someone reading can help!)