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Spotting Leukaemia

Published on 07/09/17 at 11:14am

Leukaemia is a household name, but how much do we really understand about it? Not enough, says Bethany Torr, Campaigns and Advocacy Officer at Leukaemia CARE, but she and her organisation are working to change that.

Blood Cancer Awareness Month (BCAM) in September aims to raise awareness and improve understanding of blood cancers, including leukaemia, which are relatively rare. This year at Leukaemia CARE we are running our ‘Spot Leukaemia’ awareness campaign that particularly focuses on raising understanding of the disease and increasing awareness of the signs and symptoms to improve early diagnosis.

Leukaemia is word that many people have heard of but quite often do not understand. In our 2016 patient experience survey we identified that despite 83% of people having heard of leukaemia prior to diagnosis, over half of these people (68%) were not aware of what leukaemia was. Leukaemia is a cancer of blood cells and there are on average 26 cases diagnosed in the UK each day.

The biggest myth surrounding leukaemia is that it is a childhood illness and whilst it is true that leukaemia is the most common childhood cancer, in reality children represent a small proportion of all leukaemia cases. The majority (64%) of leukaemia patients are over the age of 65 years of age and 1 in 4 are aged 25 to 64 years old.

Not only is there a lack of understanding of leukaemia in the public, it was also found from the survey that many people are unaware of the signs and symptoms of leukaemia. 83% of patients stated they did not suspect cancer before diagnosis, suggesting that many people do not associate the symptoms with cancer.

The six most common symptoms reported by patients are: fatigue, shortness of breath, fever and night sweats, bruising or bleeding, joint or bone pain and sleeping problems. The issue is, many of the signs and symptoms of leukaemia are similar to those of common, unrelated conditions or they are often associated to lifestyle factors. Many leukaemia patients will report believing that their symptoms were just signs of old age or a consequence of a busy lifestyle prior to diagnosis.

Recognising that there is both a lack of understanding about leukaemia and lack of symptom awareness in the general public is important, as these could both be contributing factors to the high levels of emergency diagnosis of leukaemia. The national cancer average for diagnosis by emergency presentation is 22%. Emergency diagnosis of leukaemia on the other hand is significantly higher than this (38%), and more specifically, acute lymphoblastic leukaemia (ALL) sees the highest rates of any cancer type (64%).

Late or emergency diagnosis of leukaemia can have a significant impact on long-term survival rates, as seen across all cancer types. The National Cancer Intelligence Network routes to diagnosis data demonstrated that in acute myeloid leukaemia (AML) one year survival rates were significantly lower for patients diagnosed by emergency presentation compared to other routes. For chronic leukaemia patients, earlier diagnosis can reduce the symptoms experienced by patients and ensure greater quality of life.

We have identified, however, that the problem of late diagnosis may not only be due to the patient interval in seeking medical attention. The survey revealed that over 1 in 5 patients (22%) visited their GP three or more times before being diagnosed with leukaemia and more concerning results revealed that 24% of ALL patients and 22% of AML patients were treated for something else before being diagnosed. This demonstrates that there can also be a delay at primary healthcare level in recognising and diagnosing leukaemia.

The results from the patient experience survey have been used to inform our ‘Spot Leukaemia’ campaign for BCAM. We are working to improve understanding of what leukaemia is and ensure that both the public and GPs are aware of the signs and symptoms of leukaemia. We want to see lives saved and improved by early diagnosis.

We have developed symptoms cards that explain what leukaemia is and give the most common symptoms reported by people of different age groups. These are being shared throughout Spot Leukaemia and urge people to visit their GP if they are concerned about spotting the signs and symptoms of leukaemia.

As part of the campaign we have sent 10,000 Spot Leukaemia packs to GP practices across the UK. We are encouraging them to get involved in the campaign and take our e-learning modules developed in collaboration with the Royal College of General Practitioners. The modules are designed to improve understanding of blood cancers and support primary healthcare professionals in spotting leukaemia, ensuring that patients are sent for appropriate tests quicker.

Online, we are sharing a wide range of videos that cover what leukaemia is and the symptoms to spot from patient and healthcare professional perspectives. We are also encouraging others to get involved with ‘Spot Leukaemia’ by sharing their experience online through the hashtag #SpotLeukaemia and encouraging fundraising events and support groups to turn spotty.  

The official launch of the ‘Spot Leukaemia’ campaign, which happened on 1 September, coincided with the launch of our ‘Living with Leukaemia’ report. This report covers a full summary of results from our 2016 patient experience survey. It explores the experience of 2019 leukaemia patients, at every step of the journey from before diagnosis to treatment and beyond.

Within the report we have identified a number of themes that cover the issues highlighted by patient’s experience. This includes: the lack of understanding and awareness of leukaemia and its symptoms prior to diagnosis, used to inform our ‘Spot Leukaemia’ campaign. Others include: the differences in patient experience across different leukaemia types; problems with lack of access to clinical nurse specialists (CNS) and other support services; and missed opportunities to recruit leukaemia patients to clinical trials.

We have produced a summary of the report findings and the accompanying recommendations that we have made to improve the experience of leukaemia patients within the UK. We hope that the ‘Spot Leukaemia’ campaign will improve the experience of patients during diagnosis and our future work at Leukaemia CARE will be directed by our findings.

You can find out more about the ‘Spot Leukaemia’ campaign, ways to get involved and download the ‘Living with Leukaemia’ report at:

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