Hey guys! I finally have another cancer-related blog for you, I bet you've missed those haven't you?
We all know that cancer doesn't discriminate - it doesn't care about your age, gender, race, situation - it really doesn't give a crap. And although some cancers are more likely to affect certain people, ultimately it is a disease that can affect anybody at any time.
Many living with cancer in the Black, Asian and Minority Ethnic (BAME) community face a different reality to what I have, as a white person.
Not only do black people and other people of colour (POC) face starker stats - later diagnoses, more advanced cancers, worse prognoses. In general, BAME communities have poorer access to education about cancer (e.g. on symptoms), cancer is often a taboo subject, and POC are underrepresented in the cancer world online and elsewhere. It really is true that racism is prevalent in every area of our lives, including cancer and the NHS.
One of the biggest issues is the lack of data. The last National Cancer Intelligence Network report (July 2015) used data from 2006-2010, and the last report on ethnic groups and cancer refers to data from 2002-2006. In addition, ethnicity data is all over the place, with details not being entered correctly or completely most of the time (Race Equality Foundation, Better Health Briefing).
So, the data we do have is incomplete, but it also does not paint a positive picture of cancer in BAME people. In this blog I want to highlight some of the prominent issues faced by ethnic minorities who are affected by cancer. No matter of our race or background, we all deserve the same chances of surviving cancer, and receiving correct care, which is why we as a country need to do more to make a difference in this area.
Institutional Racism in the NHS
Institutional racism can be defined as"a form of racism that is embedded as normal practice within society or an organisation."
We all here on this blog know I am a big fan of this country's National Health Service. It gives everyone access to free, yes free, healthcare, something that so many countries still haven't managed to achieve. We are so so lucky. Without it, who knows how I'd have paid for all my scans, hospital appointments, biopsies, surgeries, therapies etc. and how I would continue to in the future.
However, the NHS suffers from institutional racism.
Racism in the NHS impacts staff as well as patients. Recent reports show a rise in racial discrimination experienced by staff of BME backgrounds in recent years. BME staff make up nearly 20% of the whole NHS workforce, the system would quite literally fall apart without them, so why isn't more being done to tackle racial discrimination against them?
Dr Amile Inusa explains the matter of racial inequalities (specifically towards black people in the NHS) beautifully on her Instagram, so please head over to @amileya to check that out (and more, she makes a lot of informative posts!).
For every £1 a black female doctor earns, a white female doctor earns £1.19 and a white male doctor makes £1.38. (NHS Pay Gap Report 2019).
Black women are 5 times more likely to die in childbirth than white women. (Mbrace-UK Report 19).
Black and ethnic minority patients report more negative experiences of cancer care than white ethnic groups. (Better Health Briefing 47).
How do any of these inequalities make sense, when the NHS was built upon people of the windrush generation? The windrush and the NHS share an anniversary! Without black people our NHS would not function.
It doesn't make sense, but it is the fact of the matter, and something that needs more focus.
There are many reasons why BME people are treated differently in the NHS, why they receive worse cancer care, why black women are more likely to die in childbirth - they all need addressing by the government.
Cancer is a Cultural Taboo
I wrote a while ago about the C-word being a taboo in my personal experience. You can read that here. Though difficult for anyone to talk about, the C-word is even more difficult to talk about among certain BAME communities. A literal taboo. So much so that some people have to hide their diagnosis from their families, and many receive their diagnosis too late because they were unable to talk about their symptoms.
Reports find that white groups were more likely to attend breast cancer screenings. There are big disparities between different communities in screening attendance. This could be down to a number of factors, including a lack of education on the importance of these screenings, feelings of shame or fear, and the effectiveness of communication from GPs.
People who do not recognise symptoms as possible cancer are more likely to wait longer than two weeks before visiting a doctor ((Race Equality Foundation). A delay in diagnosis, even for a few weeks, can result in more advanced cancers and poorer prognoses.
Saima Thompson (from the blog curryandcancer), founder of BAME Cancer Support, sadly died from lung cancer last weekend. She was a Pakistani woman who spoke openly about taboo subjects, and about living with cancer as a South Asian woman. She campaigned passionately, and did incredibly well to get the message across and unite marginalised groups with cancer, but so much more awareness still needs to be raised.
"Cancer is raceless, this is a taboo/unspoken subject like most illnesses or ailments in the South Asian community. The older generation views at times are one of judgement, pity, religion lead, some believe that illness is simply ‘gods will’, written on the walls." (Saima Thompson, CurryandCancer).
Every culture has their way of dealing with things like illness and death, each with its flaws and positives. However, there are dangers when illnesses like cancer are not discussed openly, and when education on such matters is not accessible to everyone.
Leanne Pero, founder of the charity Black Women Rising, and author of self-published 'Take Control', was diagnosed with breast cancer a few years ago. In an interview about her project Black Women Rising, she said:
"I began blogging about my cancer experiences online... I was left overwhelmed by the huge outpouring of admiration from fellow BAME female cancer patients, like myself, echoing my experiences with the inadequate emotional support and referral services offered by the hospitals they were being treated at.
...
I was presented with stories from women who had been banished from their families and communities because of their cancer diagnosis. These women were told cancer ‘wasn’t a black disease’. They had family members disappear from their lives because they were too scared that they may catch it. Women had been told their cancer was a curse/ karma for bad things they had done in the past." (Leanne Pero, Period Powerful Hub).
As a result of cultural taboos and miseducation, people are suffering, and not only are they dying more, but their whole cancer experience is more traumatic than it needs to be, purely because of their race. There needs to be more safe spaces and support for everyone with cancer, which is why organisations like Black Women Rising and BAME Cancer Support are pivotal.
How Health Care Providers Contribute to the Problem
As I said previously, I have the upmost respect for anyone on the 'frontline', providing healthcare and making people better. However, a lack of understanding of the needs of people who aren't white/British among health care providers leads to health inequalities and a gap in support for those communities.
Overall, cancer awareness among general practitioners is frequently reported as poor, particularly in recognising rare cancers, cancers among the younger generation, and predictably among BAME people.
Although important, it should not be left up to patients to be educated on the symptoms of cancer - GPs and other doctors should be able to recognise them, take every case seriously, and refer correctly. The Cancer Patient Experience Survey found that "patients from ethnic groups were more likely to have visited their GP three or more times before a hospital referral was made for suspected cancer compared to white patients."
In addition, health care providers in many cases find it difficult to communicate properly with some cancer patients. There are not enough interpreters available in hospitals, and as a result patients suffer a more traumatic experience and are less able to feel involved in their treatment and care decisions.
Why Are Black People More Likely to Die from Coronavirus?
During the pandemic, it has transpired that black people are 4 times more likely to require hospital admission for Covid-19 compared to white people. There have been discussions as to whether this is down to systemic racism, socioeconomic differences, or biological differences. The truth is all probably play a part, but the social factors must not be ignored.
Can it really all be down to the fact we live in a society that favours the rich and elite?
(Hint- yes).
The UK isn't exactly doing great on the whole equality front, with our poorer communities facing more health disparities. We know that in some areas of England life expectancy is lower, but this is even worse for healthy life expectancy, (the number of years expected to be lived in good health). Between the most and least deprived areas of England the gap is around 19 years (GovUK Inequalities in health) - that's 19 whole years of someone's life they could be living either in poor or good health, dependent on where they live. Wealth and location should not impact a person's life in such a way, but they do.
Public Health England's report on the ethnic inequalities in Covid-19 has received criticism for not focusing enough on ethnicity, or providing any useful recommendations. It took too long to be released, and hasn't helped.
Yet again, as with cancer, we are seeing a lack of real care and action for the Black, Asian and Ethnic Minority groups in our society from the government during this pandemic.
Concluding Thoughts
What I have discussed in this blog is just a mere fraction of the health inequalities faced by BAME cancer patients. A severe lack of data makes implementing change that bit harder, but there is enough anecdotal and quantitative evidence to clearly illustrate the racism of our systems, and highlight the problems that need addressing.
Being a cancer patient is awful, but I can't imagine having to go through it all and have my race make my experience even worse. Feeling rejected from your community because of your diagnosis, being unable to talk openly, being unable to find prostheses or wigs suitable for your skin tone/hair type, being unable to communicate with your medical team.
I'm not saying that nothing is being done. Organisations and charities are growing and developing, and the NHS have some systems in place to tackle racism. But, more awareness needs to be raised, and far more work is needed if we're to see real change. It must not be left up to BAME groups to make the change, either, all of us in the cancer community and beyond need to made more aware of these issues and elevate Black and ethnic minority voices and matters.
If you want to find out more I would recommend clicking on some of the links throughout this blog, reading some of the reports I have mentioned, and checking out some of the people and organisations I have tagged below. You can even donate if you are able to. Do not be afraid also, to use your voice, and to always speak up on matters of racial inequalities.
Thanks for reading, and stay safe.
M x
Below I have shared some inspiring accounts and charities I follow, some of which I have done for a while, and some of which I have discovered more recently. There are so many more inspiring people to be found through these accounts so be sure to delve in deeper!
Organisations (Cancer and mental health charities aimed at Black and ethnic minority groups):
BME Cancer Communities
"To preserve and protect the health of people in particular but not exclusively from Black and Minority Ethnic (BME) and low-income communities living with or affected by cancer by providing and assisting in the provision of:
Culturally sensitive and appropriate practical advice, information, advocacy and support services;
Services directed to improving participation in BME cancer research and detection initiatives, and
Diversity training to improve the cultural sensitivity and service delivery of statutory bodies."
BAME Cancer Support @bamecancersupport
"A safe space online for people going through or who have gone through cancer from Black and Asian, ethnic minorities to support and discuss cancer/treatments and any cultural challenges they may be facing."
Cancer Education UK @cancer_eduk
"Charity focused on raising awareness [of cancer] within the Black, Asian, Minority Ethnic and Refugees (BAMER) and low socio-economic communities."
Black Minds Matter UK @blackmindsmatter.uk
As cancer does huge damage to mental health this charity is extremely important. "Our mission is to support in making mental health topics relevant and accessible for all black people in the UK."
Black Women Rising @blackwomenrisinguk
Founded by @leanneperoofficial (An inspiring lady who is worth a follow herself!). A safe place for Black women with cancer to find support, be empowered by like-women, and raise awareness to the issues faced by Black women with cancer.
Leanne's words: "I set up BWR in 2017 after my own battle with breast cancer at 30 years old, after realising the NHS lacked specialist support and services to black cancer patients. Many women I met during and after my treatment were either mis-diagnosed, were not being offered mental health support and generally felt excluded from communication with their consultants which has echoed the many other health inequalities amongst the bame community"
Personal Accounts (People of colour who share a bit about their cancer):
Toral was diagnosed with breast cancer at 29, but her interest in cancer started way before that. She has recently shared a whole bunch of important stats on her Instagram so please please check them out.
A conversation with her recently, as well as her account in general, inspired and motivated me to write this blog, so I owe a lot of credit to Toral! She also led me to the Race Equality Foundation Report (Better Health Briefing) that guided me through a lot of this blog. Oh, and she shares a lot of yummy recipes and knows a lot about food - so basically an all round great person to follow.
"Whilst having cancer or recurrence is a bit of a lottery, optimising my own health by focusing on a healthy diet and knowledge of how food, exercise, rest and sleep can help, along with personal development and positive mental attitude has supported my ongoing remission. This knowledge inspired me to start The Urban Kitchen, linking my passions: nutrition, science and food. I love having this opportunity to continue my learning and share my intense passion, my incredible experiences and my in depth nutrition knowledge."
Crystal @faceinosteosarcomax
Crystal was diagnosed with Osteosarcoma when she was just 18, and as a result has severe facial scarring that she wears with inspiring confidence and pride. She promotes self confidence and her message is that facial cancer should not define you! You can read and follow Crystal's blog, The Crystal Life, here.
Charlotte Crowl @charlottecrowl
Charlotte was diagnosed with cancer as a teenager, and has since written and campaigned about cancer, publishing Cancer: The Hidden Truth. She now works as a health and wellness coach but is also a big face and voice of Black Women Rising.
"I love speaking about my journey and what I do but I love listening to others journeys so much more as it allows you to look at life through their eyes. No matter how many times someone tells their story as they grow you start to hear new parts."
Kreena Dhiman @Kreenadhiman
Kreena was diagnosed with breast cancer, and blogs and writes beautifully about her experiences as an Indian woman and a mother.
"I’m very conscious that within Indian culture cancer is still hidden from the outside world. It’s perceived as something to be ashamed off. I want to do anything I can to break the taboo.
I want to encourage people from ethnic minorities to support one another more, so that when you attend a seminar or a conference, there are other Asian faces in the room. We need to be there together to show one another that we understand the cultural oddities a diagnosis can bring." (Breast Cancer Now).
Saima Thompson @saimathompson (and @masalawalacafe !)
Saima has unfortunately died since I started writing this blog and came up with this list, but she was such an inspiring lady and her work will live on so please still check out her accounts and blogs.
"My focus has been to raise awareness and connect with people from BAME backgrounds so others do not feel alone when they get the news like I did. There is a total lack of conversation around disease let alone cancer I found not just in South Asian communities but most ethnic minority backgrounds. This is due to cultural shame, taboo and lack of education, integration especially with elders. Because of the silence, the statistics are shocking and people are dying unnecessarily and being staged late in BAME communities."