Geoff Duke claims his deadly cancer was missed repeatedly when a GP refused to order him a blood test - telling him that "tests cost the NHS money".
Washington man Geoff, 50, was eventually - after switching GPs - diagnosed with myeloma. That's a lethal form of blood cancer which kills 3,000 people in the UK each year. Geoff's now in remission, but is still beholden to a cocktail of medicines, and is calling on the Government to ensure that GPs know more about myeloma.
Geoff, who is a father of four and expecting a second grandchild this year, says he had gone to the doctor repeatedly struggling with chronic back pain and issues like breathlessness. But he says his GP didn't think there was anything seriously wrong with him and it took him years and a new GP to be diagnosed. Geoff - who is a patient at Sunderland Royal and has nothing but praise for the staff there - is working with the charity Myeloma UK to raise awareness of the disease among patients and GPs.
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He told ChronicleLive: "I had lived with severe back pain going back years - and I kept seeing the doctor and telling them there was something definitely wrong here. On one occasion I'd started a job in the civil service in Newcastle and took really unwell. My back went off and I felt terrible. I had been back and forwards to this doctor for years - but he was the type of doctor who will sign you off work and that'll be that.
"I knew there was something seriously wrong with my back and I specifically asked the GP to do a blood test or a scan but I was told I was getting old, that tests cost the NHS money and that I would have to learn to live with it. I kept collapsing on the floor so paramedics were in and out. I couldn’t work. I had asked for a blood test a number of times - eventually I decided to change doctors, and because I was a new patient they wanted some routine blood tests. Within a few days they asked me to come back for another. I had three in a week.
"The new doctor said that the hospital had seen the tests and that they thought it was potentially Myeloma. From the blood test, I was in front of a cancer specialist within a week and when they went through the symptoms - severe back pain, breathless for example, I could tick them all off."
By the time Geoff was diagnosed, his cancer was quite advanced - but the option of a clinical trial meant he had an chance of extending his life as long as possible. "They said without it, I'd be looking at three years, with it, it'd be more like 10. Now we're quite a long way down the line and, fingers crossed, I'm on track to smash that."
He said that because of the nature of the illness when it was discovered, he knew he had had the cancer a long time. "If I hadn’t changed GPs and had a routine blood test done, I quite possible might not be here today – that’s the reality of it.”
Geoff - a huge music fan who still gets to gigs when he can - added he felt Myeloma was the "worst kind of cancer". "It’s prolonged, there is no cure," he said. "There’s no ringing the bell. When you relapse you go through it all over again. There’s no end game. Even when you go in remission, the underlying cancer is still there. But it didn’t have to take so long to be diagnosed.
"Yes, it’s a rare disease and not many people my age have it, but I’m part of a myeloma support group on Facebook and it’s always the same story: people are presenting with the same things – back pain and bone pain – and they’re dismissed. If my GP had just done a blood test to rule it out, I could have been treated earlier and I could have started the journey sooner. I don’t want the same thing to happen to other people."
24,000 people in the UK are diagnosed with this form of cancer each year, and despite being the third most common type of blood cancer, myeloma is especially difficult to diagnose as symptoms. This means patients experience delayed diagnoses frequently. 50% wait over five months and 34% of myeloma patients visit their GP at least three times before getting a diagnosis.
Myeloma UK has released a report highlighting that Geoff is not an isolated case - with further figures showing that, like Geoff, 49% of patients experience "avoidable, life-altering complications" because their cancer is missed. For Geoff this includes spinal fractures, while he has been lost mobility, spent time in a wheelchair and had to give up work.
The charity wants there to be targets to improve Myeloma diagnoses. Acting Director of Research and Patient Advocacy, Shelagh McKinlay, said: "We cannot allow the lives of patients like Geoff to be diminished by avoidable delays in diagnosis. The quality of life of people living with myeloma has never been more important, with advances in treatment meaning that patients are now able to live longer than ever before.
"Delayed diagnosis is well known to increase the likelihood that patients will experience two or more serious complications. Yet, there are still no specific diagnosis targets to make sure the disease is caught and treated in time and to tackle unacceptable and truly harmful delays. This is doubly unfair since we know outcomes for myeloma are already so poor."
She said the long-term impact on a patient's quality of life should be taken into account in the Government's forthcoming 10-year cancer strategy.
A Department of Health and Social Care spokesperson said: "We recognise that business as usual on cancer is not enough – that’s why we have redoubled our efforts and are developing a 10-Year Cancer Plan to set out how we will lead the world in cancer care. We are streamlining cancer diagnostic services so that people get diagnosed more quickly, including those with non-specific symptoms like those for potential blood cancer, backed by £325 million capital funding."
They also cited £2bn of funding last year and £8bn slated for the coming three years to tackle Covid-19 related backlogs - including for cancer diagnosis - and the DHSC has extended its call for evidence which will inform its cancer strategy to April 8.
