03 Jul 2025 Policy

Together we are changing lives – Here’s how your support is making it happen

At this point in our advocacy journey, we wanted to share an update to you, our supporters, on everything we’ve achieved so far and what’s next as we continue to campaign for policies that specifically support people with leukaemia.

At Leukaemia UK, our vision is to stop leukaemia devastating lives. We want to make sure that adults and children have the best quality of life possible and that survival rates for the deadliest types of leukaemia are at least doubled.

For those affected by leukaemia, the stakes couldn’t be higher. Without action, around 80% of people with acute myeloid leukaemia (AML) — including children — will die within five years. Even among those with the more treatable types of leukaemia, many are left with lifelong side effects from intensive treatments. And for people with chronic or rarer forms of leukaemia, there are significant physical and emotional challenges — as they face limited treatment options, fragmented care, and unmet holistic needs.

But here’s what your support has made possible in the last 12 months.

We’re making Leukaemia impossible to ignore

This year had brought unprecedented opportunities for change. With a new government taking office, we seized the opportunity to reshape how the political system supports the 60,000 people living with leukaemia today and the thousands more diagnosed each year. We didn’t wait for change; we drove it to ensure that leukaemia sits firmly on the political agenda.

From day one, we’ve been knocking on doors, picking up phones, and demanding meetings with political decision makers. Our team has worked tirelessly to present the compelling evidence they need to hear on how to improve survival and quality of life for people with leukaemia.

We’ve positioned ourselves as the trusted partners – offering hard-won expertise and real-world insights that reflect the daily realities of people with leukaemia and their families.

And it’s working. There’s growing awareness of the unique challenges leukaemia patients face and stronger commitments from the government to focus on early diagnosis, innovative treatment and world class clinical care for cancer patients, including leukaemia.

This is just the beginning. Every conversation, briefing and relationship brings us closer to a future leukaemia is no longer devastating lives. None of this would be without your support.

Your voices built our blueprint for change

Over 300 patient representatives and healthcare professionals helped us shape the evidence-based policy recommendations now driving our work with government. This isn’t just our wish list – it’s a mandate from the leukaemia community.

Here’s what we’re demanding:

🏛️ Accountability that matters
We’re demanding clear governance structures across Government, NHS England and local health bodies – with people appointed to oversee delivery specifically for blood cancer patients. Blood cancers are the fifth most common cancer and third largest cancer killer, yet we’re still pushing for recognition. Charities like us must have a seat at the table when national policy gets implemented.

🔬 Earlier diagnosis
We’re pushing for better access to Full Blood Count (FBC) tests, better diagnostic pathways, and targeted screening for high-risk groups (such as familial leukaemia and leukaemia due to treatment for a previous cancer).

💊 Personalised, effective treatment
One-size fits all doesn’t work. Treatments plans must be based on the latest evidence. We want genomic testing as standard with personalised treatment approaches and assigned Clinical Nurse Specialists to support every patient.

📊 Data that saves lives
We need data collection that links everything from GP visits to treatment outcomes. As well as comprehensive research datasets and proper reporting on health inequalities.

🧬Access to innovative treatments
The ability to access cutting-edge treatments like CAR-T therapy shouldn’t depend on your postcode. We’re calling for decentralised clinical trials, improved NICE processes for blood cancers, and fair access to treatment wherever you live in the UK.

📈 Proof of progress
We want regular reviews, national audits, and clear metrics to ensure promises turn into real improvements in diagnosis, treatment, and care for leukaemia patients.

This is your agenda. Built by your experiences. Powered by your support.

How we’re taking your voices straight to the top

Your voices didn’t just shape our asks – they’re powering our campaign at every level. Here’s how we’ve been advocating for you across the system:

🗳️ You made your voices heard where it counts
Over 60 of you contributed responses to the Ten-Year Health Plan and National Cancer Plan consultations. Thanks to your responses, the leukaemia community’s voice rang loud and clear in these crucial policy development processes.

🏛️ We took Parliament by storm
On World Cancer Day, we brought the reality of leukaemia straight to the heart of Westminster. Thanks to you, 53 MPs and Peers joined us in the House of Commons to hear the devastating impact of leukaemia.

The result? A commitment from the Cancer Minister to specifically address leukaemia in the National Cancer Plan. That’s not just a promise – that’s your advocacy in action.

We’ve also been championing the Rare Cancers Bill, recognising that leukaemia falls into rare disease categories that need specific policy attention and resources. Thanks to everyone who contacted their MP asking them to support this crucial Bill – your voices helped secure meaningful parliamentary support and we hope to see this become a law that will transform research for those with rare cancers, like leukaemia.

🪑We’re in the room where it happens
We’ve been building crucial relationships with Department of Health officials through strategic one-to-one meetings. We’re involved in specialist government expert groups, particularly those focused on data collection for the National Cancer Plan. Presenting detailed evidence about leukaemia gaps and providing clear solutions to drive change. Ensuring that when they measure cancer care quality, they’re actually capturing what matters for leukaemia patients.

🤝 We’re building a movement
Through partnerships with the Blood Cancer Alliance and Cancer52, we’re creating a united front that’s impossible to ignore. Demanding policies that reflect the true impact of blood cancer.

🏴🏴 We’re working for you across the UK
With healthcare devolved across the UK, we’re also campaigning in Scotland, Wales, and Northern Ireland. Developing manifestos and building partnerships with devolved administrations. With a productive collaboration with the Department of Health already secured.

The results speak for themselves:

We’ve secured a government commitment to a national cancer plan and we’ve got leukaemia firmly on the political agenda. We now need to make sure that the commitments of this plan will drive improvements for leukaemia.

But this is just the beginning. Once the National Cancer Plan is published, we will continue to work tirelessly to ensure that commitments to improve diagnosis, treatment and care for leukaemia patients become a reality.

Every day we delay action, more lives are lost to leukaemia. With 60,000 people currently living with this disease and thousands more diagnosed each year, we cannot afford to wait for change – we must demand it now.

Blood cancers like leukaemia have distinct needs that government must explicitly recognise in national policy. This means securing concrete commitments focused on three non-negotiables: earlier and better diagnosis, guaranteeing integrated, patient-centred care from day one, and setting national standards that raise the bar for leukaemia services everywhere.

The leukaemia community has spoken. Decision makers are listening. Now we must ensure they act. Because for the thousands facing a leukaemia diagnosis this year, tomorrow is too late.

Dr Georgia Papacleovoulou, Head of Policy and Advocacy