The diagnosis you fear to make and fear to miss
Author: Dr Rebecca Fisher, GP in Oxford and a Policy Fellow at the Health Foundation
It’s 11.30pm and I’m lying in bed, worrying about Pat. I left my surgery some hours ago, but I’m still thinking about our consultation, wondering whether I did the right thing.
Pat is 78 and doesn’t come to see us very often. She’d come in this time because she was ‘just not feeling right’. I’m Pat’s GP, but I’m also a policy fellow at the Health Foundation, where I’ve spent the past nine months immersed in cancer – working on our recently published report Unfinished Business.
No doctor wants to be the doctor who misses a cancer. Although a shocking one in five cancer diagnoses are made following an emergency presentation, the majority of cases are detected following referral from GPs. It’s clear that we detect too many cancers too late, when treatment is less likely to result in cure. We need to be picking up possible cancer cases quickly, but that’s often easier said than done – many patients with cancer don’t present themselves to GPs with symptoms that say, ‘I’m a cancer – refer me quickly’. Some do, and while I worry for those patients, I don’t worry that I’ve missed those cases. What keeps me up at night is cases like Pat’s.
As I listened to her story, it was clear that she didn’t have anything we’d typically call a ‘red flag’ symptom – things like a persistent cough, bleeding from the back passage or blood in her urine. But when I enquired further, she had been losing weight – over a stone in the last six weeks. Not much to go on, but unexplained weight loss can be a sign that something is amiss.
Fortunately, I’ve got a few options to investigate Pat’s case further. For patients who meet the criteria, urgent ‘two-week wait’ pathways mean that I can arrange for them to be seen by a specialist to start the process of having cancer ruled in or out within 14 days. If they don’t meet those criteria or my referral is rejected, but cancer has crossed my mind, then I can arrange tests myself. Some of those results, such as blood tests, arrive quickly, but for others, there’s a wait involved: around 6 weeks for an ultrasound scan, much longer for a routine camera test. If the patient does turn out to have cancer, I’d hugely regret the delay to diagnosis.
This is where things get tricky and GPs have tough decisions to make. All of us fear missing a case of cancer, but in some respects, the odds are stacked against us. Our consultations are short, and there’s a huge demand for appointments. In recent media interviews following the launch of Unfinished Business, I tried to stress that it’s never a waste of GPs time for people to come and see us if they’re worried they might have cancer. I could almost hear listeners shouting at their radios and TVs; they can’t get a GP appointment in the first place. I’m painfully aware of how right they are. The chronic underfunding, understaffing and under-resourcing of general practice isn’t good for patients and isn’t good for GPs either.
If we want to pick up more cancers at an early stage, we’re going to need to refer more patients for diagnostic tests. But unless hospitals have more capacity to deal with referrals, then everybody is going to be waiting longer to be seen. As some tests involve an element of risk, I’m wary of over-referring as well. I’m always aware that waiting for tests can be a worrying time for patients too – making them anxious simply to reassure myself I’m not missing something isn’t good medicine either.
So, what to do? It’s a complicated but not insurmountable problem. General practice needs to be properly funded and resourced so that we have the capacity to see the people who need to see us. GPs need help to know which patients to refer – and local referral criteria for cancer pathways need to match up with national guidelines so that GPs aren’t receiving mixed messages. As more high-quality research helps us to understand what combinations of symptoms, signs and tests can diagnose cancer, we need to make sure that GPs have access to the information, and the tests needed to translate that research in to practice. And, of course, hospitals need to be adequately resourced to meet demand on urgent referral pathways – that means not only more scanners and equipment but more staff to operate them and interpret results.
For Pat, access to faster tests and treatments can’t come soon enough. I referred her on a two-week wait pathway, and initial scans have shown a worrying area around her gall bladder. I’ve spoken with her several times since – she’s understandably finding the waiting hard. As waiting times increase for accessing cancer tests and treatments, so too does patient anxiety and fear.
Everybody knows somebody whose cancer was diagnosed too late. For me it was my Dad. 18 years and a whole lot of medical training later and I’m walking the tightrope of over-investigation and under-investigation myself. It’s a thin line and the consequences are huge. Little wonder that I’d like to work within a system that supports me to make the right decisions and offers me adequate resources to act on them.
This article was first published by the Health Foundation.