We urge Government to back ‘hidden’ cancer in NHS plans as new stats lay bare shockingly low awareness
United Kingdom
Today (Wednesday 28th May), on World Blood Cancer Day, national charity Blood Cancer UK is urging the Government to ensure blood cancer is not left behind in the upcoming National Cancer Plan. It comes as new figures reveal that awareness of the disease is shockingly low, with people with blood cancer commenting their disease is ‘hidden’.
Yet despite research breakthroughs, last year’s UK Blood Cancer Action Plan laid bare the stark reality. While progress is being made in research and treatment, too many lives are still being lost due to inconsistent care, data gaps, and lack of long-term strategic planning.
For World Blood Cancer Day, new research* conducted by YouGov for Blood Cancer UK shows nearly twice as many people (14% of survey respondents) mistakenly believe melanoma, a form of skin cancer is a type of blood cancer, compared to those who can correctly identify an actual blood cancer - myelodysplastic syndrome (MDS) (7%).
I had no idea what MDS was"
- John Reaper, who is living with the condition
John Reaper's story
John Reaper, who lives in the village of Silsoe, Bedfordshire was diagnosed with MDS at 62 years old. He had a career that involved frequent travel, staying in hotels, and dining out regularly. When the pandemic halted his travels, he noticed gradual but significant weight loss.
"I ended up going from 85 to 75kg," attributing it to changes in his routine. He also noticed a slight rash on his chest and stomach and experienced night sweats, but didn’t think much of it. John’s wife insisted he saw a doctor. On December 2, 2021, he had a blood test. Just hours later, he received an urgent call from his doctor.
"Your counts are all wrong, and we advise you not to leave the house," Further tests confirmed the diagnosis: myelodysplastic syndrome (MDS), a type of blood cancer.
"I had no idea what MDS was", said John.
Recent research conducted for Blood Cancer UK by Supernova also found that 4 in 5 people with blood cancer consider their cancer ‘hidden’. This is despite blood cancer being the UK’s third largest cancer killer, taking away more than 15,000 lives every year.
Thankfully John’s stem cell transplant was successful, but it has not been without its challenges. He still receives regular treatment to regulate the effects of the transplant.
“For me, the key thing is facing things with the right attitude. What do I need to do to still be here. It’s my own little sacrifice. And now what can I do to give back.”
MDS is a type of blood cancer where the bone marrow does not work properly and makes faulty blood cells. Around 2,150 people are diagnosed with MDS in the UK each year.
This World Blood Cancer Day, we’re urging the Government to consider blood cancer in the National Cancer Plan, acknowledge where cancer ambitions don’t necessarily work for every cancer type and ensure those affected by blood cancer aren't left behind"
- Helen Rowntree
Blood Cancer UK’s Chief Executive, Helen Rowntree, spoke on behalf of the blood cancer community to urge the Government to make sure people like John and others less fortunate are not left behind. She said:
“Despite advances in treatment, blood cancer continues to be left behind in national cancer policy. Because of people like John who are living with the effects of this devastating disease daily we must invest in research. Ultimately, without a greater understanding of blood cancer we can’t unlock vital funding, meaning it’ll take longer to get to the day when blood cancer is beaten.
“During the COVID-19 pandemic, we saw the transformative difference it can make when blood cancer is looked at as a whole. This World Blood Cancer Day, we’re urging the Government to consider blood cancer in the National Cancer Plan, acknowledge where cancer ambitions don’t necessarily work for every type of cancer, like leukaemia, lymphoma and myeloma, and ensure those affected by blood cancer aren’t left behind. If the new National Cancer Plan is truly to be long-term and future-focused, it must give blood cancer the attention it urgently needs.”
Blood cancer is the third biggest cancer killer in the UK, yet awareness and political attention just don’t match that reality. "
- Clive Jones, MP
Clive Jones MP for Wokingham backs Blood Cancer UK's call,
“Blood cancer is the third biggest cancer killer in the UK, yet awareness and political attention just don’t match that reality. I’m proud to use my platform to push for change, and we need the National Cancer Plan to reflect the scale and urgency of the challenge faced by all those with blood cancer.”
Blood Cancer UK is calling for the National Cancer Plan to:
- Include the blood cancer workforce in future NHS planning
- Improve diagnosis targets that reflect how blood cancers are staged
- Invest in better data collection and reporting at the blood cancer level
- Ensure equitable access to treatment and clinical trials across the UK
*The YouGov data was carried out by YouGov plc on behalf of Blood Cancer UK, across April 2025 asking “Which, if any, of the following do you believe are types of blood cancer?” with a panel size of around 4,400
