A first of its kind study, commissioned by Leukaemia UK, has revealed that a quarter (26%) of leukaemia patients in England experience avoidable delays in their diagnosis, resulting in a significant impact on patient outcomes and NHS resources.
There are currently 60,000 people in the UK with leukaemia, and half of all people diagnosed will not survive beyond five years.
The analysis examined over 12,700 cases of chronic and acute leukaemia diagnosed between April 2015 and March 2023 (excluding COVID-19 years) and identified multiple points where delays occurred.
For acute leukaemia[1], the most aggressive forms of leukaemia, these delays were largely found at the primary care level. They included a delay in escalation after presenting to a GP with symptoms (28%), a delay in escalation after multiple GP visits (21%) and a delay in escalation following an abnormal blood count (15%).
Some delays in acute leukaemia diagnosis were also flagged in secondary care, including through the emergency pathway such as A&E. Leukaemia has one of the highest rates of emergency diagnosis, with an average of 37% of cases diagnosed in an emergency setting, compared with 21% across all cancer types, according to Leukaemia UK.
The study showed that a further quarter (26%) of leukaemia patients who experienced diagnostic delays were eventually diagnosed in an emergency setting. Diagnosis through A&E can sometimes be necessary and unavoidable, but it can also reflect missed opportunities for earlier intervention.
Early intervention is especially critical for patients with acute forms of leukaemia, with the study finding that emergency setting diagnosis was associated with higher one-year mortality. In acute myeloid leukaemia (AML), one of the most aggressive and deadly leukaemia types, one-year mortality was 67% for patients diagnosed in an emergency setting, compared to 48% for those diagnosed in a non-emergently setting.
From an economic perspective, delays in the diagnostic pathway shift health care activity from planned to emergency care and result in increased costs. In AML, delays in diagnosis cost the NHS an estimated £1.7 million in avoidable healthcare activity across GP, outpatient, and hospital services in the three months before and six months after diagnosis. This is equivalent to approximately £11 million over the last five years.
Fiona Hazell, chief executive at Leukaemia UK, said: “This report shows clearly that too many people with leukaemia are slipping through the cracks in our healthcare system. This is a story that we sadly hear far too often from patients and their families, with many people reaching an avoidable crisis point.
“Every diagnosis counts but currently we are still failing too many patients. We must do better for the thousands of people diagnosed with leukaemia every year. These findings should be a wakeup call for Government that they must urgently address the needs of people with leukaemia in the upcoming National Cancer Plan.”
Tracey Palmer-Hole, who was diagnosed with AML, said: “I saw my GP several times over months with symptoms including bone pain, exhaustion, bruising and mouth ulcers. I wasn’t offered a full blood count test and was told it was rheumatoid arthritis, but the medication didn’t help. It wasn’t until I fainted and ended up in A&E two months later that I was finally diagnosed with AML.
“While the care I received was exceptional and I feel very lucky to be in remission, that is not the case for everyone with leukaemia. I fully support Leukaemia UK’s call for change – early diagnosis saves lives.”
Leukaemia UK is calling on the Government to commit to urgently tackle delays in early diagnosis in their upcoming National Cancer Plan.
The organisation is calling for the establishment of a Best Practice Timed Pathway for leukaemia patients, a commitment to faster referral for a full blood count test, clearer guidelines for escalation, and better follow-ups to help diagnose leukaemia earlier and reduce emergency diagnosis.
Leukaemia UK will also be launching a national campaign, ‘Count Us In’, focussed on highlighting delays in leukaemia diagnosis among policy makers and the importance of full blood counts as simple and affordable tests to rule in or rule out leukaemia in people with symptoms.
