Why did it take two years to diagnose my leukaemia? Joel Atkinson, 31, suffered night sweats, fatigue and back pain which doctors blamed on arthritis… but the truth was far worse
- Leukaemia patients are being misdiagnosed or waiting too long for a blood test
- Many are suffering worse illness or may even die after missing early intervention
- Some 5,000 Britons each year are killed by Leukaemia – a form of blood cancer
- Symptomatic patients should receive a £2.65 blood test within 48 hours
Leukaemia patients are being misdiagnosed or waiting too long for a simple yet vital blood test that can flag up the disease – meaning that many suffer worse illness, and may even die when treatment given earlier could have saved them.
In light of the worrying new research, two of Britain’s leading blood cancer charities today issue a plea to health chiefs and policymakers to tackle the problem and reduce the grim toll of an illness that kills 5,000 Britons every year.
According to official NHS guidance, anyone visiting their GP with tell-tale symptoms such as persistent fatigue, fever, bruising or bleeding and recurrent infections should be referred for a ‘very urgent’ full blood count within 48 hours – a test that costs the NHS as little as £2.65.
But data shared exclusively with The Mail on Sunday suggests just a third of patients are picked up straight away, and a quarter go for up to four months and see a GP multiple times before being given the test. In this time, the condition can worsen to the point that it’s untreatable.
In one shocking case, a 31-year-old electrician went undiagnosed for almost two years.
-Father-of-one Joel Atkinson, from Bishop’s Stortford in Hertfordshire, pictured with his partner Amy Claire, was hit with severe shoulder and back discomfort in late 2019, which was initially put down to a stressful job and, later, arthritis
As his health deteriorated, he spoke to doctors and NHS 111, and visited A&E ‘countless’ times, suffering crushing fatigue, night sweats and excruciating pain. Yet it was only after collapsing at home and being rushed by ambulance to hospital and then into intensive care that he was finally diagnosed with leukaemia. (Pictured: Amy Claire and Joel Atkinson with daughter Isla)
Father-of-one Joel Atkinson, from Bishop’s Stortford in Hertfordshire, was hit with severe shoulder and back discomfort in late 2019, which was initially put down to a stressful job and, later, arthritis.
As his health deteriorated, he spoke to doctors and NHS 111, and visited A&E ‘countless’ times, suffering crushing fatigue, night sweats and excruciating pain. Yet it was only after collapsing at home and being rushed by ambulance to hospital and then into intensive care that he was finally diagnosed with leukaemia.
Other sufferers told similarly disturbing stories of missed opportunities and delays. Julia Jones, 74, from Preston, says she ‘knew something was seriously wrong’ but was told by her GP that the constant tiredness she was feeling was her age, and that the tennis ball-sized lump under her right arm was ‘just raised glands’.
Eighteen months later a routine mammogram picked up a lump in her breast and she was referred for an examination and biopsy.
Retired teacher Julia says: ‘When I raised my arm, the doctor saw the old lump – he looked horrified.’
Further investigations revealed that she had chronic lymphocytic leukaemia, an incurable form of the disease.
‘It was more than frustrating – I’d found the first lump more than a year before my diagnosis and had seen the GP three times. The breast lump was also related to the leukaemia. I was never given a blood test to check the cause of my symptoms.’
Meanwhile, 68-year-old Vivien Martin from Herefordshire dropped three stone ‘without trying’ over two months – and so was sent by her GP for investigations for ovarian and bowel cancer. When these tests came back negative, the doctor wrote ‘unexplained weight loss’ on her notes. Only after she insisted on a blood test, after four months, was her leukaemia discovered.
Vivien, who is about to start a new round of treatment to control her condition, says: ‘I’m not pushy and I wouldn’t normally question a doctor’s opinion, but something made me question it that time and I’ll always be glad that I did.’
A full blood count involves the number and appearance of the different blood cells in a sample being checked in a laboratory. If abnormalities are seen, further investigations can confirm a diagnosis.
And timing is of the essence, warns consultant haematologist Professor Antonio Pagliuca, an expert in blood cancers at King’s College Hospital, London. He says: ‘Leukaemia can develop rapidly. Patients can go from the early stages to advanced disease in a few months. A cure is more likely if it’s caught earlier, whereas later on people can be so ill they might not be able to cope with aggressive treatment. As it is, people may be dying unnecessarily, when a full blood count given earlier could have saved their life. It’s a simple test – it’s cheap, any lab can do it, and the results can be available the same day.’
According to the most recent NHS data, 75 per cent of all cancers are picked up by GPs within one or two appointments. But ‘capacity pressures’ and ‘staffing issues’ were sometimes stopping them from ordering full blood counts, even when they are aware they should, claim leukaemia campaigners.
Although the test itself is quick to carry out, a doctor must be available to interpret the results.
Charities Leukaemia UK and Leukaemia Care are now working together to turn the tide.
Julia Jones, 74, from Preston, says she ‘knew something was seriously wrong’ but was told by her GP that the constant tiredness she was feeling was her age, and that the tennis ball-sized lump under her right arm was ‘just raised glands’ – which turned out to be leukaemia
Their Spot Leukaemia campaign, being launched tomorrow, aims to encourage doctors and the public to be more aware of the signs and symptoms of the disease, which can also include unexplained joint or bone pain, night sweats, unusually pale skin and petechiae – tiny red, brown or purple pinprick-like marks caused by bleeding under the skin.
Leukaemia UK chief Fiona Hazell said: ‘We know that early diagnosis can save lives. The sooner leukaemia patients are picked up through a full blood count, the sooner they can get treated. The longer the wait, the more poorly they become and the fewer options there are.’
Roughly 28 people are given the news they have leukaemia every day in the UK – more than 10,000 a year. The disease affects the bone marrow and lymphatic system, part of the immune system, triggering production of large numbers of abnormal white blood cells.
Normally these fight infections, but cancerous white blood cells don’t function properly, leaving patients vulnerable to bugs most people would easily shrug off.
They can also ‘crowd out’ red blood cells, vital for carrying oxygen around the body, and platelets, which help the blood clot. As a result, anaemia – which causes breathlessness and fatigue – and internal bleeding are common complications of the disease. There are a number of types of leukaemia, and they affect all ages, including babies and children. However, most cases are seen in middle-aged and older people.
Only half of patients survive more than five years, making it among the deadliest of cancers.
Overall, a third of patients are diagnosed when they become extremely unwell and are admitted to hospital in a crisis. For certain types of leukaemia, this figure rises to two-thirds. At this stage they are often too unwell to cope with treatments, which can be aggressive.
The age and health of patients is also key – older and more frail patients are less likely to bounce back. But overall, those diagnosed early have a 50 per cent chance of surviving the disease, while those who are picked up at later stages face a poor prognosis.
For example, only 34 per cent of people with acute myeloid leukaemia, the most common form of the disease, who are diagnosed after an emergency admission survive for a year.
Prof Pagliuca says: ‘If leukaemia is picked up earlier, there’s a five to ten per cent greater chance of survival. But often the first time we see a patient is when they’ve suffered significant medical issues, such as catastrophic bleeding or a severe infection.
‘In these cases, we have to treat those problems before we can do anything about the cancer, and some patients don’t recover.
‘This may be due to some patients brushing off their symptoms and not going to the doctor. But we know others do see the GP and are not picked up, when it would have been simple to order a full blood count.’
This was certainly the case for Joel Atkinson. He recalls waking up one morning in September 2019 with pain in his shoulder: ‘It was excruciating – a sharp but constant pain that was so bad I could barely move my arm. I went to the doctor, who said it was tendonitis and that it wouldn’t last long.’
Joel found the pain would go away then return. ‘Later it travelled to my lower back. I had to go to A&E more than once because it got so bad. It was so confusing, because I didn’t remember injuring myself. I was also constantly exhausted and had terrible night sweats.’
After a year, hoping to get another opinion, Joel decided to move to a different GP surgery.
At this stage he was referred to a rheumatologist and given arthritis drugs. His journalist wife Amy, 29, says: ‘Joel was booked in for an MRI scan to check the condition of his joints, but because of the pandemic this was delayed for five months.’ In July he had the scan. On the day he was due to go and collect the results, Amy went into their bedroom to find Joel in agony. ‘His lips had gone blue,’ she recalls, still clearly shaken.
He was rushed into intensive care where he was treated for sepsis – a life-threatening immune system reaction to an infection. Only after this was he finally diagnosed with acute lymphoblastic leukaemia.
The MRI scan results showed there was no problem with Joel’s joints but there were lesions in the bone marrow inside his spine, which is a sign of leukaemia.
‘That’s why he had been suffering back pain,’ says Amy. ‘It was a shock, because up to that point everyone had been telling us he had arthritis. It was terrifying – and I was also angry. We felt so let down.’
Defying all odds, Joel recovered from the sepsis and was out of intensive care after two days. In September he started chemotherapy – and developed near-fatal sepsis again.
‘I was sedated, so I don’t really remember much of it,’ says Joel.
Amy, however, recalls it vividly: ‘It was the most traumatic thing ever, seeing the person you love the most go through that. But I had this stubborn belief that everything would be OK.’
Incredibly, Joel pulled through again – and it turned out that round of chemo had been a success. It had cleared the cancer, and he is still in remission.
Now Joel and Amy, who have a daughter, Isla, five, are committed to raising awareness about the condition that nearly killed him. ‘I had all the symptoms,’ he says. ‘I’m fit and play football, but I was so exhausted I couldn’t walk up the stairs at times. I was having night sweats that drenched the bed and lost a lot of weight. I’d told my doctors all of this.’
Amy continues: ‘It’s important all GP get better support and training to help them spot the signs.’
Professor Martin Marshall, Chair of the Royal College of General Practitioners, said a problem faced by GPs is that leukaemia symptoms can be similar to those of more common and less serious conditions: ‘An average full-time GP may see one new case of blood cancer a year and will make around 8,000 patient contacts,’ he says.
‘We need to increase the cancer workforce across the NHS, including in primary care.’
Leukaemia Care chief executive Zack Pemberton-Whiteley says the charities want both patients and GPs to be more aware of the symptoms: ‘A full blood count is needed to rule out leukaemia and can also help explore what other causes there might be for the patient’s symptoms. NICE [the National Institute for Health and Care Excellence] guidelines clearly state that a full blood count is urgent when leukaemia symptoms are present, for any of these symptoms alone.’
l September is Blood Cancer Awareness Month. For more information visit leukaemiacare.org.uk and leukaemiauk.org.uk.
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