13 Mar 2024 Policy

Leukaemia UK launches manifesto to demand better for those affected by leukaemia

Leukaemia UK has today launched its manifesto to demand better for those affected by leukaemia.   

The manifesto calls on the next government to save and improve the lives of those with leukaemia by publishing a Cancer Strategy in its first year. The charity has identified four priorities for this, which reflect the experiences of nearly 300 people affected by leukaemia. 

Fiona Hazell, chief executive of Leukaemia UK, said: “Every day 27 people in the UK are diagnosed with leukaemia. Leukaemia is also the most common cancer among children, making up almost a third of childhood cancers. Yet despite this, leukaemia has been neglected by successive governments, and as a result survival rates remain low – acute myeloid leukaemia (AML), for example, has a five-year survival rate of around 14%, compared to an average of 55% across all cancers in England.” 

The four priorities highlighted with Leukaemia UK’s manifesto are: 

• Priority 1: Invest in cutting-edge leukaemia research to benefit all patients through leveraging the unique opportunities that the UK offers across NHS, academia, industry and the charity sector. Four in ten patients with leukaemia are not informed about the benefits of patient participation in research, with one in two not offered any opportunities to do so.   

• Priority 2: Improve early diagnosis of leukaemia through investing in early detection strategies for those at risk and through fostering an environment where people with symptoms can have full blood tests faster. Delays in diagnosing leukaemia risk lives – only a third of people diagnosed with leukaemia receive timely blood tests, with 37% of leukaemia patients diagnosed through emergency presentations, contributing to poor survival.  

• Priority 3: Ensure access to kinder, more effective treatment and care for all leukaemia patients and families through offering a holistic needs assessment to everyone at the point of diagnosis and post-treatment. A holistic needs assessment at diagnosis and post-treatment is key to address the unique emotional and physical needs people with leukaemia face because of gruelling long-term treatment – however only 9% are offered one.   

• Priority 4: Publish more and better health data and undertake clinical audits to improve quality of diagnosis, treatment and care of leukaemia. Current limitations in leukaemia health data obstruct our understanding of patient outcomes and hinder improvements in diagnosis, treatment, and care. Leukaemia-dedicated health service reviews and national clinical audits do not exist for leukaemia like they do for most cancers.    

The manifesto is being supported by Jake Andrade, 21, from Suffolk. Jake was diagnosed with leukaemia at 13 and then again at 19. Jake said:

“If I relapse again there are no more treatments they can give me. People like me, who can’t handle any more intensive therapy, need new, less harmful, more effective treatments. They could well save and improve the lives of many people.”  

Fiona Hazell continued: “As Jake’s experience shows, while organisations like Leukaemia UK are making a real impact in accelerating progress through research, there is still much to be done to improve both survival rates and quality of life for those affected by leukaemia and to bring them more in line with other types of cancer.   

“This year sees a once in a generation opportunity where we have the power to harness the life-changing potential of research, data and technology to change the future for leukaemia patients. We must demand better to stop the devastation it causes to tens of thousands of families across the UK every year.”

Leukaemia UK is urging people to demand better for those affected by leukaemia by signing an open letter to political party leaders asking them to implement its manifesto.

Sign the open letter.