Nearly 40pc of cancers are only diagnosed when patients turn up at A&E

Why nearly 40pc of cancers are only diagnosed when patients turn up at A&E: It’s a shameful statistic – especially when many of them had repeatedly sought help from doctors but their condition was missed

Today, Caron Nolan is undergoing major surgery for advanced bladder cancer. The mother of two from Bexley, Kent, is having her entire bladder and nearby lymph nodes removed, as well as her womb and fallopian tubes.

After the six-to-eight-hour operation, she will need to wear a urostomy bag — a pouch to collect urine as it drains from an opening in her abdomen.

Speaking to Good Health days before her surgery, Caron, 60, is nervous. Yet along with fear, the former fitness instructor is also experiencing another emotion: anger. 

Anger that the NHS has let her down.

For six months, her symptoms were repeatedly dismissed as ‘just an infection’ by her GP — or, rather, GPs; she rarely spoke to the same doctor twice.

It was only after becoming desperately ill in February this year that Caron, who lives with her partner, learnt what was wrong — and only then because she’d gone to A&E. She was diagnosed with squamous cell carcinoma of the bladder, an aggressive form of the disease resistant to chemotherapy.

Paul Garratt, 40, a charity worker, lives with wife Rachel, 35, a GP, in Saffron Walden, Essex. He says: ‘If I’d waited for my scan, I might not be here. Going to A&E that night saved my life’

‘At first I felt numb as it was so hard to make sense of it,’ she recalls. ‘But as it sank in, I was almost shaking with anger.

‘My GPs should have done something months ago. I must have made ten appointments between last August, when my symptoms — needing the loo urgently several times a day and night — started, and early January when I began passing blood. Now the cancer has spread. I am terrified of what the future might bring.’

It is a shockingly common story. Research published last week revealed more than a third of cancer cases in the UK are only diagnosed after the patient went to A&E with cancer-related symptoms. The UK figures are far higher than in other, comparable high-income countries such as Canada and Norway.

Furthermore, people who end up in A&E were less likely to survive, particularly if they have stomach, bowel, liver, pancreatic, lung or ovarian cancer, according to the study by the International Cancer Benchmarking Partnership and Cancer Research UK.

As these figures are pre-pandemic (the data are from 2012 to 2017), there is a real fear that the numbers will be even bleaker in the wake of the Covid restrictions on healthcare access.

Going to hospital saved my life 

Paul Garratt, 40, a charity worker, lives with wife Rachel, 35, a GP, in Saffron Walden, Essex.

I’d been feeling strange for about two weeks — bloated and uncomfortable after eating, always on my right side, under my ribcage. And for the past two years, I’d found I couldn’t put on weight like before.

The feeling under my ribs became really painful. So I went to my GP, who thought it might be my appendix or gallbladder but, after examining me, said this was unlikely.

So I was referred for a scan. This was in October 2020 — on the cusp of the second lockdown — so there was a likelihood there would be a wait, even though the scan was marked ‘urgent’.

Then, five days after seeing the GP and still with no news of my scan, I was suddenly violently sick.

I kept being sick every 20 seconds. Rachel obviously knew this was not normal and rushed me to A&E. The nurse at the door took one look at me and ushered me through.

I was given a CT scan and told there was a complete blockage in my colon, which had spread beyond my bowel wall — that’s why I was being sick — and the blockage was life-threatening.

The next morning I had surgery to remove a tumour. They hoped that would be it. But a follow-up scan a month later showed a 2 cm mass in my liver, and I had four rounds of chemotherapy and surgery. 

After another round of chemo in 2021, the doctors said they’d got it all — I now have three-monthly scans. I have no cancer and feel better than ever.

If I’d waited for my scan, I might not be here. Going to A&E that night saved my life.

UK cancer survival rates already lag behind other developed nations. In 2019 the UK was near the bottom of the league table of high-income countries for all forms of the disease — and at the bottom for stomach, colon, rectum, pancreatic and lung cancer.

How can the UK compare so badly, given we have some of the world’s leading cancer research teams as well as the latest tech? For example, Milton Keynes University Hospital has become the first in Europe to use the Versius Surgical Robotic System for major gynaecological surgery, including complex cancer cases.

The problem has many roots, but early diagnosis is a key issue.

Some forms of the disease, such as lung and ovarian cancer, can have ambiguous signs. The study found these cancers were more likely to be diagnosed in A&E, by which time the disease may be advanced, says Professor Karol Sikora, one of the UK’s leading cancer experts. But he says this is compounded by flaws in the system.

‘GPs may not see a patient’s symptoms as serious, so they might come back four times before being sent for investigation,’ he says.

‘This is a system plagued by a lack of focus on the needs of the consumer. For example, the predominant consumers of general practice are older — they may not want access by computer. But the system these days doesn’t adapt for the consumer — everything is online.’

The irony, he says, is that in the UK, we used to pride ourselves on the two-week wait referral system to ensure patients with suspected cancer symptoms were seen by a specialist within a fortnight.

‘I was on the committee that designed it, and I know it was launched with the best intentions. But it doesn’t work — partly due to a lack of diagnostic capacity — with relatively few people diagnosed in this way.

I wish I’d kept a diary of my symptoms

Janet Peacock, 61, a nurse, lives with her husband David, an accountant, in Truro, Cornwall, and has four children.

During a training exercise in January 2020, a student measured my blood oxygen level at 93. A healthy level is between 95 and 100. It is a real red flag and can mean something is seriously wrong but I stupidly told the students it was probably a mistake.

I’ve since gone over why I dismissed it. I thought I was too busy. I’ve seen so many timewasters in the NHS that it has pushed me the other way, to ignore signs.

It wasn’t even my first symptom. I’d had consistent pain in my left leg for months, which radiated from my bottom. My GP said it sounded like sciatica and recommended painkillers, which I’d been taking anyway.

Then I started suffering from bloating and by May 2020, my oxygen levels fell as low as 88. This time my GP sent me for an X-ray, which showed pleural effusion, where the lining of the lung had filled with fluid. I blamed a flu I had months earlier and went home, but within days was back in A&E.

Doctors said they wanted to do a CA125 test to measure a protein that can indicate ovarian cancer. A healthy reading should be 35 — mine was over 700. Days later, on my 60th birthday, I got my diagnosis of ovarian cancer. My breathlessness and pain were caused by the 5 cm x 6 cm tumour. It was Stage 4, having spread beyond the ovaries, and incurable.

I had surgery in July 2020 to remove my ovaries and tumour, followed by chemotherapy. But the cancer returned within months and I’m now on a drug called niraparib, a tablet that slows cancer growth.

I don’t blame my GP. The situation was dire due to Covid and I ignored my symptoms.

I don’t know how long I have left. Most people in my situation live for two years. My goal is to have another Christmas.

If I’d kept a symptom diary, I could have put two and two together and who knows where I would be right now.

Targetovariancancer.org.uk

‘In France and Germany, if patients think they have cancer symptoms the GP isn’t necessarily the key person. They can choose a specialist themselves or set up a scan without going through a GP.’

France, Germany and Italy also have ‘one-stop shops’ in community settings where checks and tests can be done under one roof.

In fact, the NHS has plans to replace the two-week referral system with a ‘faster diagnostics standard’, where urgently referred patients should be diagnosed or cancer ruled out within 28 days.

Professor Sikora thinks that it will be challenging to meet even that deadline.

Some blame lies with lack of awareness about symptoms, such as for, say, ovarian cancer. GPs and patients may put symptoms such as a bloated abdomen down to irritable bowel syndrome (IBS).

‘Yet IBS should be a diagnosis of exclusion,’ says Professor Gareth Evans, a cancer specialist at Manchester University who specialises in genetic risk, especially in breast and ovarian cancer. ‘In cases of persistent bloating, IBS should never be diagnosed until other causes such as ovarian cancer have been excluded through tests.’

General practice is also being blamed. ‘The problem is GPs are overworked and have to get patients out quickly,’ adds Christopher Eden, a professor of urology at Surrey University.

‘And patients may see a different GP each visit. The majority of people with, say, persistent urinary symptoms will have an infection — but it is also a cancer symptom. But if the patient is seeing a different GP each time, the easy thing to do is to prescribe antibiotics, and if the patient comes back it’s another GP’s problem. Whereas 20 years ago you saw the same person and they’d see this as a red flag.’

An aggravating feature is getting to see a GP. Pre-pandemic, around eight in ten GP appointments were face-to-face. It is now only 61 per cent. As Professor Sikora says ‘you can’t diagnose cancer on the phone’.

Official figures suggest there were between 240,000 and 740,000 ‘missing’ urgent GP referrals for suspected cancer from March 2020 to September 2021, and between 35,000 and 60,000 fewer people started treatment for cancer than would have been expected.

Caron’s symptoms began last August when she started urinating more frequently.

If the GP had sent her for scans sooner, they may have found the tumour

Abigail Solieri, 33, an events director, lives with husband Chris, a digital marketing consultant, and their daughters — Arianna, six, Mya, three, Zara, one, and three-week-old Raya — in Herts.

Last July Arianna complained of upper back pain. Our GP suggested seeing an osteopath, who diagnosed muscle tightness. It wasn’t severe so we agreed it was down to her new bed.

The pain subsided but returned months later in the lower back. Arianna was at a party but wasn’t joining the other children on the bouncy castle because of pain. I called 111 who said they’d call back — it took 18 hours and in the meantime I’d taken her to A&E as she was screaming with pain.

A urine sample showed traces of blood. But one doctor thought it was OK and said: ‘I don’t know what you expect me to do?’

The next day she could barely walk. I took her to an urgent care unit where staff said she might have a kidney infection. I feel so angry and frustrated now for not demanding more tests.

We went to the GP the next day who sent us to the hospital. But they tried to say they couldn’t X-ray her: I was adamant and they did X-ray her pelvis, but not her back. If they had, we might have seen the tumour earlier.

At one point, A&E staff suspected sepsis and gave her antibiotics, but still sent us home.

Days later we were back in A&E. Her infection markers had doubled and she was vomiting. An ultrasound revealed she had a tumour on her left kidney.

It was neuroblastoma, a cancer that had spread to her bones, eye sockets and legs.

Arianna finished chemo in February, then had a stem cell harvest and is having more chemo before surgery, which will be risky as the tumour is wrapped around an artery. Even then there’s a high chance of relapse so we’re trying to raise funds for a vaccine that’s available in the U.S.

We call Arianna Wonder Woman because she’s an absolute trouper despite what she’s going through. But I’m angry that no one realised something was seriously wrong sooner. If the GP had referred us for blood tests or a scan the cancer might not have spread.

I should not have had to go to A&E eight times. We could have saved her so much pain.

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To see a GP, she had to fill in a form online. During a call from one doctor hours later, she was advised to come to the practice and provide a urine sample. A week later Caron received a call from a different doctor, diagnosing a urinary tract infection and a prescription for antibiotics was dispatched.

When the drugs didn’t help, Carol contacted the surgery again — and again, she was asked to do a urine test and told she had an infection. It was a situation which would be repeated several times over the following five months.

Caron says: ‘I never saw a GP in person. So I was never examined.’

In January she started passing blood — her GP again asked her to provide a sample and told her that it was an infection.

Professor Eden says ‘a standard infection should respond to antibiotics’. That it didn’t in Caron’s case, along with the blood in her urine, should have been a red flag.

Weeks later, Caron developed severe flu-like symptoms. Applying for an appointment online, she was told a call from a GP was scheduled for Monday but if she deteriorated, she should go to A&E. ‘That’s exactly what I did,’ Caron recalls.

She began vomiting and underwent blood tests and a scan which revealed a mass on her bladder.

‘I couldn’t stop vomiting and couldn’t eat,’ she says. ‘Then, to top it all I got Covid.’ This meant the surgery she needed to remove the cancer was delayed.

For Gordon Jayson, a consultant medical oncologist at the Christie hospital and a professor of medical oncology at the University of Manchester, cases such as Caron’s show that ‘a lack of opportunities to see a GP has allowed a disease like cancer to progress’.

But it’s wrong to blame individual GPs, he says. ‘I don’t think GPs are slacking — they are at their wits’ end. It’s important patients flag any symptoms that are getting worse, though clearly not all will be confident enough to do so.’

Professor Sikora suggests what is needed is a cancer ‘hotline’, where staff would use a computer algorithm to refer people directly to diagnostic centres, with the results going to a relevant hospital specialist.

‘That way you bypass the delay at GP level. We wouldn’t do more tests, we’d just do them quickly.’

The difficulty is a shortage of staff. Last week the Health and Social Care Committee said staffing shortfalls are ‘jeopardising’ progress on diagnosing cancer early.

Another route to faster diagnosis is through setting up NHS Community Diagnostic Hubs across the country — ‘one-stop shops’.

Professor Sikora is medical director of Rutherford Cancer Centres, a group of private cancer care centres which has built one such diagnostic hub in Taunton with Somerset NHS Foundation Trust.

At this centre everything is done in one morning. ‘Investigation is completed in a few hours so people can be reassured or be channelled elsewhere,’ he says.

Would introducing screening for

more cancers help? It was hoped, for example, that a blood test for CA125, a protein linked to ovarian cancer, might work as a screening tool. But a study by University College London found cases detected earlier were still hard to treat.

Otherwise, it is down to a public health campaign to raise awareness about symptoms, suggests Georgios Lyratzopoulos, a professor of cancer epidemiology at University College London who led the latest research.

‘We need to keep providing information on signs of cancer,’ he says. And to encourage people not to feel shy about symptoms — a 2019 BUPA survey found that a fifth of UK adults have put off seeking medical advice around ’embarrassing’ cancer symptoms.

For people like Caron, change can’t happen soon enough.

‘Until my symptoms began I was fit and healthy,’ she said. ‘I needed a doctor to talk to me, examine me and refer me for tests. It should not have taken so long to get diagnosed.’

Professor Martin Marshall, Chair of the Royal College of GPs, told Good Health: ‘The challenge is striking the balance of ensuring patients get the care they need, without overloading onward specialist services.’

And as many cancer symptoms are similar to other conditions, he adds: ‘having sufficient time with patients is vital’.

Interviews by Julie Cook and Jill Foster

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