Recently, we took part in a Cancer52 led-workshop, alongside other member organisations, focussed on the huge problem of inequality in rare and less common cancers. What are the problems, how are people overcoming them, and why do we need to be talking about this, together?
The term “rare and less common cancers” refers to all cancers, except the most common four: breast, prostate, lung, bowel. Whilst tackling all cancers is essential, statistically, more people die from rare and less common cancers” (which includes head and neck).
Cancer affects everyone differently. The theme of this year’s World Cancer Day, on 4th February, highlights this, with the theme of United through Unique. While this is certainly the case, there are stark statistical facts that mean certain groups of the population are affected much more, than others.
There are three areas which heavily impact quality of care:
As a collective group of rare and less common cancer charities, we want: the best care, no matter what diagnosis, background.
In summary: cancer care is not happening equally; and we want this to change.
Individuals with non-white ethnicity, a disability, non-male gender, face greater inequalities in diagnosis, health and care. This often goes unnoticed or un-challenged due to lack of data, however, the team at Cancer52 have conducted both qualitative and quantitative data to prove it to be true.* (If you would like to find out more, please contact Cancer52).
These greater challenges create a “double disadvantage”; including issues such as financial and emotional difficulties, with BAME groups having far less positive experiences of care.
In summary: marginalised groups continue to experience negative bias in healthcare and recovery.
Another shocking and upsetting fact, is children not being listened to. Stats show that the majority of young people had to visit their GP 3 times before diagnosis. This is hugely worrying – as the time between each appointment could be weeks, or months. This has led to most only being treated as a result of being admitted as an emergency patient.
We all know how beneficial early diagnosis is – and especially in the case of a rare or less common cancer such as head and neck – when a cancer is diagnosed late, it can lead to devastating consequences, for patients and their families.
In summary: children with rare and less common cancers are not being listened to, and this is creating an emergency crisis.
So, what can be done? Below are a few ideas shared by the community of Cancer52 members.
What are we going to do? Here at Get A-Head, we are a member of Cancer52, and also the Head and Neck Cancer Coalition. We believe collaboration is key: using our joint voices to send a message to government, as well as pooling resources to create public facing campaigns.
Co-production. We are passionate about funding projects that prioritise co-production; where real patients are involved in the creation of a service. This is the key, to not only ensuring patients feel heard and supported now, but that future services, future treatments, actually work for the people who need it most.
In summary: we are focussing on collaboration as a sector, and advocating for co-production – to ensure that anyone who goes through head and neck cancer, can have the best possible experience and improved outcomes.
You can also read more in a report published by Cancer52 here: https://www.cancer52.org.uk/single-post/cancer52-health-inequalities-report
