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Providing support to anyone affected by blood cancer
This September, we have gone spotty with the launch of our ‘Spot Leukaemia’ Campaign for Blood Cancer Awareness Month.
The ‘Spot Leukaemia’ campaign is all about increasing understanding of leukaemia and raising awareness of the signs and symptoms to both the public and healthcare professionals. We hope to see lives saved and improved through early diagnosis of leukaemia.
The high proportion of leukaemia patients being diagnosed upon emergency presentation compared to the national cancer average, 38% vs 22% respectively, highlights the huge problem of late leukaemia diagnosis. This problem is made only clearer upon the recognition that the highest rate of emergency diagnoses of any cancer is seen in acute lymphoblastic leukaemia (ALL), with 64% of patients being diagnosed by an emergency presentation between 2006 and 2013.
Tackling this problem of late leukaemia diagnosis through the ‘Spot Leukaemia’ campaign is hugely important. Emergency diagnosis indicates that the leukaemia has progressed, which has an effect on the success of treatment. Patients who are diagnosed and treated earlier have significantly higher long-term survival rates and are more likely to have a better quality of life.
Our 2016 patient experience survey revealed both lack of understanding of leukaemia and lack of symptom awareness as potential causes to the patient delay in leukaemia diagnosis. While 83% of patients had heard of leukaemia prior to diagnosis, 68% of these people didn’t know anything about it.
Further findings revealed that 83% of people did not suspect cancer before their leukaemia diagnosis. This suggests that many people fail to relate their symptoms to cancer and may explain why as many as 1 in 10 chronic leukaemia patients experience symptoms for over a year before visiting their GP.
These findings have been used to inform and direct the ‘Spot Leukaemia’ campaign for raising public awareness. We want people to become more aware of what leukaemia is and ensure that people are better equipped to spot the symptoms of leukaemia across different age groups, urging them to visit their GP if they are concerned.
The second delay to leukaemia diagnosis is often observed at primary healthcare level. On average, a GP may encounter just one leukaemia case every four or five years, demonstrating how rare leukaemia is. The rarity of it and its symptoms that are similar to common, unrelated problems can mean that there is often a delay in GPs spotting and diagnosing leukaemia.
In our survey, around 13% of all leukaemia patients were treated for something else before being diagnosed, and 1 in 5 patients visited their GP three or more times with symptoms before diagnosis. This highlighted the importance of also targeting the ‘Spot Leukaemia’ awareness campaign at healthcare professionals.
We developed an eLearning tool in collaboration with the Royal College of General Practitioners (RCGP). The training modules are designed to support GPs and equip them with the knowledge to spot the signs and symptoms of blood cancer earlier, as well as refer patients for appropriate specialist tests and treatment if a blood cancer is suspected.
For ‘Spot Leukaemia’, we have sent 10,000 packs to GP surgeries across England containing the symptoms cards, an eLearning tool flyer, ‘Spot Leukaemia’ poster and flyer. The packs will help point primary healthcare professionals to the online training modules and help them to get involved in supporting and promoting ‘Spot Leukaemia’ within their surgeries.
We want to see the lives of patients both saved and improved by early diagnosis. Raising public awareness and GP awareness of leukaemia and its symptoms through the ‘Spot Leukaemia’ campaign can help to achieve this.
· Distributing leukaemia symptoms cards – The symptoms cards explain the different types of leukaemia and give an indication of the most common symptoms reported by patients of different age groups.
· Online patient videos – Covering their leukaemia journey, the six most common leukaemia symptoms, the different types of leukaemia, and how people of different age groups are affected.
· Social media campaign – Social media has gone spotty, with the #SpotLeukaemia hashtag, Facebook page and photo frames, and Twitter. We are sharing what Leukaemia CARE and others are doing throughout ‘Spot Leukaemia’. Get involved and share your leukaemia experience!
· Spotty events – Fundraising events and more are turning spotty with special #SpotLeukaemia merchandise, including car stickers, balloons and awareness ribbons.