In a 2019 report, The Marmot Review 10 Years On, renowned professor of health equity Professor Sir Michael G. Marmot wrote “There can be no more important task for those concerned with the health of the population than to reduce health inequalities. Review what can be done to reduce health inequalities and then do it. Social justice demands it.” There are so many inequalities when it comes to cancer. These inequalities affect the way people experience the diagnosis itself, treatment and post-treatment support, impacting everything from attendance at GP’s surgeries, access to diagnostics, drugs and, ultimately, survival rates.

Back in 2018, after a conversation with one of our incredible young adult ambassadors, the late and much missed Saima Thompson, Trekstock was challenged to do better when it came to challenging health inequalities. She helped open our eyes to the lack of representation and cultural awareness in the cancer space including at Trekstock, leading to our first Lifting the Lid on cancer in the BAME community, hosted at Saima’s restaurant, Masala Wala Cafe. We heard stories of just how deep-rooted the beliefs are about cancer in different communities - how the word cancer doesn't even exist in some languages so it's never even talked about, how people would not talk about their diagnosis to the way prosthetics and wigs for people of colour aren't even available on the NHS.

INEQUALITIES ARE FAR REACHING

But the issues of cancer inequality stretch beyond race and cultural barriers. Whether you've been treated rurally or in an urban place, your sexual orientation, gender identity, ethnicity, whether you're rich or poor, education, physical disability, learning difficulties and sensory impairment, language and whether you can see or whether you're deaf all play a part in your experience of cancer. And the key to ensuring the needs of these communities are being met? Data. Comprehensive good quality data is essential for enabling policy makers and healthcare professionals to identify the specific needs of different groups and respond with tailored strategies for addressing inequalities in cancer care. Lack of understanding and lack of data collection means support, awareness and education needs of these communities are not being met.

DATA RICH, INFORMATION POOR

We partnered with Toral Shah of The Urban Kitchen and gathered a group of experts to explore the lack of data within the cancer sector, examine the impact this has on patient experience and discuss what needs to change.  Brad Gudger, founder of peer support charity Alike put it succinctly when he said “if statistics are missing, that means people are missing”, but for public health consultant Edward Kunonga, the statistics aren’t missing, they’re just not being used effectively: “we collect far too much data and use very little of it. We are data rich and information poor”.

When we’re information poor, it leads to an inability to provide the right care for different communities, or tailored care not being prioritised or brought to the forefront. One size does not fit all as Stewart O'Callaghan, founder and Chief Exec of Live Through This, the UK's only LGBTIQ+ cancer charity knows all too well. He explained: “The LGBTIQ+ community are still fighting just to be seen in these data sets. In the healthcare system if you're not a data point you don't exist. If you're a trans person for example and you're going through this system, this also impacts things like screening access - are you actually able to be invited to screening? 

He added: “With people who go for cervical screening, if they're a trans man quite often when their sample is sent to the lab, the lab will just refuse it because it has a male mark on it. In my view the NHS records are not fit for purpose they categorise everything into just sex which is male and female.”

Toral agreed, stressing that the importance around sexuality and gender came back to prevention, education and awareness, adding: “if you have a prostate it doesn't matter what gender identity or sexuality you are, you just need to check it. If you have any breast tissue you need to have that checked, if you have a cervix, at some point you need to have that checked, because the incidence of cancer has not changed.”

DATA ON ATTITUDES

As far as ethnicity is concerned, Dr Adrienne Milner, an expert on race-ethic inequality stressed that it’s about data on attitudes, rather than data on patients, that is missing. She explained: “We need data on racism because race and ethnicity does not cause racial disparities - racism causes the disparities. No data is collected in the NHS on racial attitudes of clinicians because they are the decision makers, they are the ones who treat people, they are the ones who people might not even present at a clinic or for screening if they have had an experience of discrimination or they feel that they will be treated differently. I think the data that's completely absent is data on homophobic attitudes, racist attitudes, sexist attitudes of clinicians because that is where the disparities happen”. 

SOLUTIONS?

But how do we solve these problems? For Brad, it’s about using lived experiences to co-design and co-produce a system that works for people who are receiving the service and setting it up for those who intersect numerous protected characteristics: “if you make the system work for someone who is black, trans, impacted by cancer and from a low socioeconomic background - if you make it work for them, it works for everybody.”

Professor Kunonga believes the answer lies in handling the data effectively and making sense of cohorts of patients. He explained that when that happens, it’s possible to go beyond the anecdotes and begin to really understand the issues of the care pathways that are being delivered. Ideally, anecdotes and data should be combined. Toral added: “we have the heart and the stories and we have the data and the people but it has to all fit together".

Because getting people to engage with data doesn’t come without its challenges. For many within these communities, there is fear and mistrust of institutions that have failed them again and again. Dr Georgette Oni, founder of the ‘Let’s talk about…Black Women and Breast cancer’ annual conference and a breast surgical oncology specialist explained that without this trust, no change will ever happen: “​​you can have as many data as treatments as you want but if people don't engage or people don't feel safe to engage then we're not going to get any change in outcomes.”

Stewart echoed Dr Oni and called on clinicians to recognise their own implicit bias: “There's a real power imbalance here. The system has to change but also the attitudes. Clinicians have to understand they have a part to play and we all have implicit bias but when we go to work we have to overcome that and put patients needs first.”

INEQUALITIES STARE BACK

There is nowhere to hide when it comes to cancer inequalities. As far as Professor Kunonga is concerned, “when you look at health inequalities, regardless of where you look, the inequalities just stare back at you as if to say “what are you going to do about it?”” and it’s important that the onus doesn’t just fall on the patient to call out these inequalities. 

He added: “Organisations really need to continue advocacy to make sure that those of us who work in public service don't leave communities behind. Continue to challenge us to make sure that we get it right for the patients and the communities that you work for. Then I think for healthcare professionals we need to call it out when we see it. We need to ensure that we are advocates for the communities where we come from but not only communities where we’re from. If we look at all the big revolutions that have happened for marginalised communities they have not only been about marginalised communities shouting out for themselves it has also been about those people who are in privileged positions saying “this is not right”.”

SO, WHAT NEXT?

The conversation is far from over. Our work is far from done. A conversation on cancer inequality that started with our friend Saima will continue to grow and we will continue to do what we can to advocate for marginalised communities. 

In 2022, we will be launching our manifesto on cancer inequality for charities to strive to work towards together and a toolkit to help every organisation to do better. If you want to stay up to date with our work, get in touch with our Head of Programmes Jemima Reynolds. 

We will, as Michael Marmot called on us to, review what can be done to reduce health inequalities and then do everything in our power to do it. Because health inequalities are not just bad for those people who are affected by them directly. They are bad for everyone.

Watch the full discussion on cancer inequality with Toral Shah, Dr Adrienne Milner, Dr Georgette Oni, Professor Kunonga, Stewart O'Callaghan, Charlene Young and Brad Gudger here: