When our much missed friend Saima Thompson (pictured above at a Trekstock Lifting the Lid event) challenged us to do better when it came to the inequalities faced by some people with cancer, we don't think she could have envisaged the conversations she was going to start. TBH, neither did we. But this week, we're incredibly proud to be part of a new report from Cancer 52, aiming to tackle inequalities around rare and less common cancers.

Because when we think about inequalities and cancer, it's easy to only think in terms of protected characteristics. It's easy to scratch the surface, to only tick the boxes, to only show up for the work in a superficial way and pat yourself on the back for a job well done. But we know there's more work to do. 


Understanding the issues around rare and less common cancers is a key part of this. The stark reality is that those with rare and less common cancers are currently more likely to die than those with the four more common cancers (breast, prostate, lung and bowel). And our community of people diagnosed with cancer in their 20s or 30s (which is an inequality itself) is made up of those with every variation of the disease. They can experience inequalities, due to their sex, ethnicity, age, sexual orientation, socioeconomic group or where they live or the type of cancer that they have. There's often a place where these things intersect too, creating bigger challenges for communities to access the care they need.

When it comes to rare cancers, the inequalities start at the awareness stage and run right through cancer experiences. 64% of our community is made up of those with rarer cancers or less common cancers and their health can suffer as a result. Some folk may have less awareness of cancer and its symptoms, especially when it's a rarer type, and find it harder to spot when something's wrong. At diagnosis, those with less common cancers often visit their GP several times before they're referred. Accessing diagnostics can be tricky too. Some communities face longer wait times than their white peers and some with rarer cancers experience poorer care. Younger people are less likely to be diagnosed at an early stage, which is why we joined Cancer52.


For us, there's a massive conversation to be had about what happens if treatment ends too. What's the cost to quality of life? People can be left with ongoing needs when they're living with and beyond cancer, especially around mental and emotional wellbeing. The levels of support across the country can vary massively. And if support's there? It's not usually age appropriate. For those diagnosed when they're younger it doesn't cover the things that matter most - menopause, work, sex? Often not covered by a widely stretched NHS. Things you know we're passionate about effecting change around.

In 2021, we brought experts together to talk about institutional inequalities when it came to data collection, analysis and how cancer care is built around a white, cisgender, able-bodied centric narrative, and is not accessible or catering to everyone. The report from Cancer52 shows that this care needs to be switched up to address inequalities around cancer type too.


There's been a patchy focus on inequalities in cancer at national level. To get the best outcomes for people with rarer cancers, including those in their 20s and 30s, we're joining with Cancer52 to call for a greater focus on all cancer inequalities at a national level. Recommendations for this include:

  • A National Cancer Inequalities Oversight Group to work with stakeholders from across the cancer community and have ownership and responsibility for improving cancer inequalities.
  • Targeted action created in partnership with the NHS and the rare and less common cancer community to identify gaps for individual cancers due to inequalities and what action is needed to close these gaps.
  • More comprehensive data collection. Data is only routinely collected and reported based on age and sex.
  • A better understanding of patient experience and quality of life. People from all backgrounds should be encouraged to complete the Cancer Patient Experience Survey and Quality of Life Metric so data shows the experiences of all groups.

Everyone diagnosed cancer must get the best possible diagnosis, treatment and care, no matter who they are, where they live, or what type of cancer they're diagnosed with. More research is needed into the inequalities that exist for rare and less common cancers. We need better data and more transparency to tackle the problems faced by communities like ours.

We'll keep doing everything we can to make sure everyone who's diagnosed with cancer can access the best care possible, for the best outcomes possible.

Read the Cancer52 report in full (it's well worth it)