09 Jul 2024

A new era for the UK must bring real and recognisable change for people with leukaemia

The swearing in of our newly elected MPs, and the start of a Labour government administration, marks a fresh chapter in UK politics. We welcome Sir Keir Starmer as our new Prime Minister. There’s no denying that this Government now faces a huge challenge to deliver on their pre-election promises and tackle the issues most important to voters. It’s essential that health, healthcare and the much-needed rejuvenation of the NHS are top priorities. Change may well have been a buzzword but now it’s time for more than that – we need commitment, action, and progress. 

We know that one in two people in the UK will develop some form of cancer in their lifetime. Yet the focus tends to be on the most common cancers such as breast, lung, prostate and bowel – solid cancers with comparatively high survival rates and good treatment options, including surgery. But what about the other cancer types, like blood cancer, which is the UK’s fifth most common cancer but the third biggest killer in adults?   

Every day, 27 people in the UK are diagnosed with leukaemia [1], a type of blood cancer, amounting to almost 10,000 new cases per year. Roughly 60,000 people in the UK are currently living with leukaemia – almost all the population of the seaside town of Margate. Ironically, many breakthroughs in leukaemia research have led to developments in other types of cancer but treatment options for leukaemia are still limited and its survival rate is lagging. The most common form of acute leukaemia in adults, acute myeloid leukaemia (AML), has a dire five-year survival rate of just 13.6%, compared to the 55% average five-year survival rate for all cancers.   

Leukaemia is complex and can be a very aggressive cancer type, so quality of life for those diagnosed is often poor [2]. Our own research has illustrated how a leukaemia diagnosis and treatment can negatively impact a person’s physical and mental health and financial stability. Those diagnosed battle with issues such as a reduction in income for those unable to work, stress and anxiety, increased costs for gas, electricity and travel to hospital appointments, and a weakened immune system restricting where they can safely go.  

“People who have leukaemia and their families are robbed of any normal life as they often struggle with the changes such a significant diagnosis brings to their everyday routines.”

In 2024, this simply isn’t good enough. We cannot afford for blood cancers, including leukaemia, to be neglected any longer. Now is the time for our new Prime Minister and his government to commit to and publish a fully funded cancer strategy within the first year of administration. This strategy should be informed by those affected by leukaemia, other blood cancers and health experts to ensure that the needs of the nation’s people are recognised and acted upon. A National Blood Cancer Committee, accountable to the new Government, should ensure that this strategy prioritises people with blood cancer, including leukaemia.   

As leukaemia is the most common childhood cancer, this Committee should closely collaborate with the recently created Children and Young People Cancer Taskforce to ensure improvements in leukaemia diagnosis and care span every generation.  

The National Cancer Strategy and Committee accountable to the Government must look at every aspect of what it means to be affected by leukaemia. As with many types of cancer, early diagnosis is key to support long-term survival through effective and timely treatment and ensuring the best possible quality of life for those affected. Unlike many cancers, there is a relatively cheap and simple full blood test that already exists to detect or even rule out leukaemia. Yet people with symptoms are all too often denied such a vital test and end up being diagnosed at A&E – 37% of those with leukaemia were diagnosed in an emergency setting, compared to 21% for more common cancers.

In addition, more people with leukaemia have repeated GP appointments before being diagnosed than any other cancer. What’s even more concerning is that, in recent years, things have been getting worse. Take AML as an example – between 2013 and 2020 in England, the number of people being diagnosed with AML in A&E increased by 10%, whereas the number diagnosed by their GP has reduced by more than half. 

An effective route to diagnosis that ensures referral for a full blood test within 48 hours would not only reduce the distress of an already difficult diagnosis but would also save the NHS money. This is arguably more important than ever at a time when the NHS and the cancer care it provides are beyond crisis point. 

It’s not just the bumpy route to diagnosis which needs addressing. Development of and access to new kinder, more effective treatments should be a priority to increase the chances of surviving this devastating disease and living well. As part of NHS reform, we would like to see the new Parliament immediately take on Labour’s life sciences plan to ensure there are more clinical trials, a robust drug appraisal system and a sustainable workforce. This is so that medicines reach the people who need them and that they are also supported with unavoidable side-effects.  

“Research unearths the solutions, but this means nothing if it is not backed by the political ambition and commitment to get innovation out of the laboratory and into the hands of people who need it.”

Living with leukaemia is hard in a myriad of ways. That’s why every person affected by the disease needs to have a Holistic Needs Assessment (HNA) at the point of diagnosis so care – in whatever form is needed – is available from the very beginning. This will give them the best chance to both survive and enjoy a real quality of life.   

At Leukaemia UK, we will not stop until those in power ensure that people with leukaemia are diagnosed as early as possible, have access to kinder and more effective treatments and receive vital ongoing support. We will continue collaborating with our partners and peers including the Blood Cancer Alliance, Cancer52 and We3Can to help our united voices be heard. We also want to collaboratively work with all the political parties and leaders to improve the lives of people with leukaemia.  

So, our message to those who have the power to drive change is – will you work with us and commit to prioritising the needs of those living with leukaemia both now and in the future? Because, if you will, together, we really can stop leukaemia devastating lives. 

Fiona Hazell, Leukaemia UK Chief Executive

References

1 – Hamilton W. Leukaemia diagnosis and primary care. Br J Gen Pract. 2024 Jan 25;74(739):54-55. doi: 10.3399/bjgp24X736149. PMID: 38272696; PMCID: PMC10824351.  

2 – Niedzwiedz CL, Knifton L, Robb KA, Katikireddi SV, Smith DJ. Depression and anxiety among people living with and beyond cancer: a growing clinical and research priority. BMC Cancer. 2019 Oct 11;19(1):943. doi: 10.1186/s12885-019-6181-4. PMID: 31604468; PMCID: PMC6788022. Accessed 12/06/2024 

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