Our Action Plan at a glance

To beat blood cancer within a generation, we set out to understand the experiences of those who have received a diagnosis of blood cancer and been through treatments, as well as the experiences of those working with people affected by blood cancer. To do this, we brought together a diverse taskforce with representation from across the four nations of the UK and commissioned new blood cancer data.

You can read our full report in English or in Welsh.

The research we commissioned analysed blood cancer survival in the UK in comparison to other countries with similar health and wealth systems. Shockingly, it told us that:

• More than one million years of life have been lost to blood cancer over a decade.
• The likelihood of someone surviving their blood cancer depends on their background, education and where they live.
• For each blood cancer type, UK survival rates trail behind those of comparable nations with similar wealth and healthcare systems.

We've produced 17 recommendations for governments, the NHS, charities, the pharmaceutical industry and others to improve treatment and care in the UK. Our recommendations focus around workforce future-proofing, swifter diagnosis of blood cancer, the best care for blood cancer patients, equal access to trials and treatments, and data sharing.

Staffing shortages and low morale means that too many skilled professionals are leaving the workforce, while too few are being encouraged to join it. We want to see a properly resourced blood cancer workforce, and suggest:

1. Guidelines for clear and safe staffing levels to deliver the best possible care are included in future NHS workforce plans.
2. A programme that provides continuous support for Clinical Nurse Specialists (who are the back-bone of blood cancer care), and an increase in recruitment numbers.
3. More opportunities and protected time for clinicians to take part in research.

One in three people visit their GP three or more times before being diagnosed, and too many are diagnosed in A&E. Certain groups of people are also more susceptible to developing blood cancer and we should be doing more for them. To overcome these challenges, we want the NHS to:

1. Help people from ethnic minorities, lower income backgrounds, and remote areas get faster blood cancer diagnoses by tackling the challenges they face.
2. Create urgent referral pathways for patients with unclear blood cancer symptoms to avoid misdiagnosis.
3. Set up screening programmes to identify blood cancer early in people who are more likely to get it.
4. Ensure healthcare professionals follow specialist diagnositc guidelines across the UK.

Getting the right blood cancer care can be hard, depending on where you live. Some hospitals have cutting-edge facilities, but others don't. This means patients might have to travel far or even miss out on the cutting edge treatments. To guarantee that everyone with blood cancer only receives the best treatment and care, we want the NHS to:

1. Research the obstacles people face when trying to access blood cancer care, and suggest ways to make it easier.
2. Encourage blood cancer teams to direct people with blood cancer towards our support services like ours, to help patients learn how to monitor their condition and enable them to take an active role in their care.
3. Look into how problems with sharing patient information in the NHS can affect blood cancer treatment and care and find ways to fix them.

We know that there’s inconsistent awareness of clinical trials among blood cancer teams, and this is disproportionately affecting those from ethnic minorities. In the absence of a public database of open trials, we have stepped into the gap by providing a Clinical Trial Support Service. And when it comes to treatment, we know that even when drugs are approved, they aren't always used. To address this, we want to see:

1. Targeted support for pharmaceutical companies that makes it easier for them to set up clinical trials.
2. Strategies that will boost clinical trial participation through addressing barriers for underrepresented groups.
3. More efficient UK drug and treatment approval processes that ensure access to cutting-edge treatments.
4. Investigation of why some NHS approved drugs are hard to access, so everyone can get their recommended treatment.
5. Minimum care standards to guarantee clinical excellence and equal access to approved treatments, including remote and at-home care.

We want data to be collected on blood cancer in a way that will advance the field. Currently, the way we indicate someone has blood cancer in medical records is inconsistent and this can lead to serious errors. During the pandemic, we saw groups of people with blood cancer being left off the eligibility list for Covid-19 treatments. This is putting lives at risk and makes the data we have unreliable. To address this, we want to see:

1. National blood cancer data collected, analysed and reported on in a consistent way across the UK.
2. Blood cancer to be classified in the same way as solid tumours – as a distinct category, alongside the specific type, to produce a more accurate understanding of how many people are affected.