04 Sep 2022 Awareness raising

Worrying numbers of leukaemia patients are being misdiagnosed or waiting too long for a blood test, say leading UK leukaemia charities

Patients in the UK face “the luck of the draw” when presenting with leukaemia symptoms. GPs are often left without adequate support to provide blood tests or process the results – despite NICE guidelines stating that an urgent blood test should be ordered for anyone presenting with any of the symptoms of leukaemia.

Leukaemia patients are being diagnosed too late because they are not receiving a blood test at the earliest opportunity when they present with symptoms, say two leukaemia charities as they publish a new policy briefing to help healthcare chiefs improve the situation. It is World Leukaemia Day on 4th September. The charities’ Spot Leukaemia campaign is running throughout Blood Cancer Awareness Month.

27 people receive a leukaemia diagnosis every day in the UK – that’s nearly 10,000 every year. Nearly 5,000 die from the disease every year and overall survival stands at just over 50% – making it one of the most deadly forms of cancer.  Early diagnosis saves lives, with people having a lower chance of survival if diagnosed in an emergency.

Leukaemia has one of the highest rates of emergency diagnosis, with an average of 37% of all types of cases being diagnosed in an emergency setting. This means that patients are being diagnosed when it’s too late, which is linked to reduced survival.  Additionally, they are often too unwell to cope with the treatments for leukaemia, which are known to have a harsh effect on the body. The highest emergency presentation rate for any cancer type is acute lymphoblastic leukaemia (66%), the most common type of childhood cancer. 

Charities Leukaemia Care and Leukaemia UK are emphasising the importance of GPs being supported properly to ensure patients with symptoms of leukaemia receive a blood test promptly. The charities have found that patients are having to visit a medical professional multiple times before getting a blood test and subsequent diagnosis.

In many cases patients visit a GP multiple times with symptoms such as fatigue, bruising, unusual bleeding or repeated infections, before experiencing more severe symptoms and needing emergency A&E treatment.

In the charities’ recent survey of 253 leukaemia patients, only a third of patients reported being given a blood test straight away (within 48 hours) after first presenting to their GP with leukaemia symptoms. 15% of leukaemia patients said they visited their GP more than three times before they were referred to hospital. 

The diagnosis challenges facing GPs

NICE guidelines for GPs in England call for GPs to organise an urgent blood test (within 48 hours) for anyone presenting with any of the symptoms of leukaemia, including unexplained bruising, extreme fatigue, repeated infections and unexplained fever.

However, Leukaemia Care and Leukaemia UK found that 23.5% of patients with acute leukaemias said that it took 3 to 4 months after presenting to the GP with symptoms to get a blood test. Only 68% of people were given a blood test within 48 hours.

GPs face huge challenges – not only due to capacity issues but also due to the vast array of conditions, many of whose symptoms overlap, that they must try to diagnose.

Capacity issues are proving an obstacle to effective diagnosis. Some GPs have noted that staffing issues have deterred them from offering blood tests in some cases, as they know that analysing the results will take time that they simply don’t have. Leukaemia Care and Leukaemia UK spoke to GPs about the issues faced and were told that they often lack capacity to fully interpret the blood tests and that processes regarding blood test interpretation are inconsistent across the UK.

In their recent inquiry into workforce recruitment, training and retention, the Health and Social Care Select Committee, reported that the number of full-time equivalent GPs fell by more than 700 over three years to March 2022, despite a pledge to deliver 6,000 more.

It is clear that GP capacity constraints must be addressed, both through direct GP investment, and through making use of additional capacity elsewhere in the community. For leukaemia diagnosis in particular, making sure blood tests are available and offered when a patient presents with relevant symptoms, is also vital to improve early diagnosis.

Zack Pemberton-Whiteley, Chief Executive of Leukaemia Care said,

“A blood test is needed to rule out leukaemia. A full blood count (FBC) is a cheap, everyday test that can also help explore what other causes there might be for the patient’s symptoms. NICE guidelines clearly state that a full blood count is urgent when leukaemia symptoms are present, for any of these symptoms alone. It is imperative that GPs have the capacity and support to order and interpret blood tests. We are calling on the government to set out how they will increase GPs numbers, to adhere to these NICE guidelines. We also call on NHS bodies, both locally and nationally, to provide more support for GPs, such as better access to colleagues in haematology departments.”

Fiona Hazell, Chief Executive of Leukaemia UK said,

“The earlier that people are diagnosed, the greater the range of treatment options available to them. By enabling patients to have access to the best range of treatments as early as possible, early diagnosis combined with advancements in treatments thanks to research, can help to save and improve lives. A leukaemia diagnosis has a devastating impact at any stage, but by detecting it early via a blood test, the additional anxiety, complications, and potential loss of life caused by an emergency diagnosis can be avoided.

It is vitally important that the capacity for blood testing and pathology is increased to enable GPs to offer a blood test at the earliest opportunity and that there is more support for GPs to interpret the blood test results too.”

Read more in the Mail Online.

Find out more about Spot Leukaemia.

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