“I didn’t go to the GP because I didn’t want to bother anyone”

As a new report reveals black people are receiving cancer diagnoses seven months later than their white peers, Hana Rajabally talks to a north London patient about her experience.

Black people receive a cancer diagnosis seven months after their white counterparts, on average, a study by a biopharmaceutical company found.

Bristol Meyers Squibb (BMS), a global company that researches, develops and delivers innovative medicines to help patients overcome serious illnesses, and cancer charity Shine Cancer Support commissioned polling company YouGov to survey 1,002 people diagnosed with cancer in the UK based on their experience.

The result of the survey called a report 1,000 votes, not 1shows that people from minority ethnic backgrounds experience an average delay of one year between seeing the first symptoms and receiving a cancer diagnosis, double the average for white people (11.9 months versus 4.9 months), highlighting the inequality in cancer diagnosis in the UK. .

The report is part of a new campaign by BMS which aims to understand and tackle the many possible reasons for inequalities in the UK’s cancer experiences, which could include low awareness of cancer and its associated symptoms and challenges in accessing services.

Precious, 45, a British woman of Nigerian descent living in north London, was diagnosed with chronic myeloid leukemia (CML) in June 2012, aged 33, six months after showing the first symptoms in December 2011.

Precious said: “At first I didn’t want to go to the GP because I didn’t want to bother anyone. I didn’t know about the symptoms of cancer either, so I stayed on it for a long time.”

None of Precious’ friends or family could connect the dots as they were unaware of the symptoms of cancer as cancer was never talked about in her family and was considered “shameful” in her culture.

When Precious finally went to her family doctor, she says her doctor was dismissive and told her it was just stress.

“I felt I had to assume his authority”

Walking out of the GP surgery, Precious burst into tears because she knew something was wrong with her, but she wasn’t being taken seriously.

Reflecting on how she was treated by her family doctor, Precious noted, “I felt I had to submit to his authority as a medical professional.”

But to confirm her instinct, Precious passed out in a tube station just a week after her visit to the GP.

Precious was then brought to A&E where she was diagnosed with chronic myeloid leukemia (CML) cancer, after which she did not leave hospital for six months.

Precious said Barnett Post about some negative experiences he had while receiving treatment for CML in 2012.

One night in the hospital, Precious needed a scan because she had really bad stomach pains. The nurse who performed the scan was a Nigerian woman and Precious said she was happy to be cared for by a member of her community.

However, while the nurse was doing the scan, she asked Precious if she had been to Nigeria recently. Precious replied that she had visited earlier that year in February, but was shocked to hear the nurse’s response.

“Did you steal someone’s husband?”

“She asked me, ‘Did you steal someone’s husband or someone’s money at home?’ This could be why you have cancer.

“Hearing that was very upsetting, especially coming from someone who works in a hospital,” Precious said.

On another occasion, another nurse brought Precious a piece of paper with the cancer death rate printed on it and told her to tell her family that she was dying and that she didn’t have much time left in this world.

Although she never complained about the first incident, Precious filed a complaint against the nurse in the latter incident because she caused her so much distress, even though she initially did not want to file a complaint.

Precious explained that there is a large culture of shame in many ethnic minority cultures, meaning that those with cancer are often made to feel responsible for their illness or that they are being punished in some way for something they have done. This is due to a lack of education about how cancer develops in the body.

Precious experienced this culture of shame in her own circle of friends and family, as well as in the hospital, and at first did not want to tell those close to her about her diagnosis because of the stigma associated with cancer in her culture.

“Let’s not fight about it”

Once she was successfully treated and declared cancer-free, Precious found that friends and family did not want to talk about her experience of having cancer, with someone very close to her telling her: “It’s over now, stop we talk This one.”

Having loved ones dismiss her cancer experience was very painful for Precious, as she noted Barnet Post: “I struggled with depression for a very long time. At first I wanted to hide.”

However, twelve years on from her first diagnosis in A&E, Precious is now a passionate advocate for those living with cancer within the black and Asian population.

Over the past five years, she has worked with a number of major cancer charities to help empower cancer patients and encourage them to get the help they need, particularly for those from cultures that are often silent about cancer.

“What drives me is awareness”

Precious said: “What drove me is awareness. When I looked through the hospital cancer brochures, everyone was white. It makes people think, so black people aren’t affected by it. The stuff around cancer doesn’t reflect other communities and I don’t know if doctors can provide the help they need.”

Precious encourages others to talk about their own experiences to help ‘demystify’ cancer and the shame associated with it in many ethnic minority cultures.

The 1,000 Voices, Not 1 report found a number of factors that may contribute to the significant discrepancy in diagnosis rates between white and POC cancer patients, including that people from ethnic minority groups were more likely to attribute their symptoms to others conditions compared to white individuals (51% vs 31%).

Another factor related to concerns about work and finances, with a higher proportion of people from ethnic minority groups having difficulty seeing a GP compared to white people, both in terms of getting an appointment – ​​including because of long waiting times and few places available – (25% vs 16%) and in being able to make time for it because of work (18% vs 4%). The report found that 35% of respondents from an ethnic minority background were worried about being able to pay their utility bills after a cancer diagnosis, while only 20% of their white peers had the same concerns.

Similarly, 36% of respondents from an ethnic minority background worried about having to dip into savings, while this was only a concern for 16% of white cancer patients surveyed. While a quarter of ethnic minority respondents worried about having to stop working after being diagnosed with cancer, only 10% of white respondents had the same concern.

Precious’ personal experience with cancer reflects a similar story. Unable to work for long periods of time due to cancer and receiving treatment, Precious was forced to work on benefits and at one point went into debt.

The report also found that patients with a poorer understanding of cancer before diagnosis were significantly more likely to need two or three appointments before referral compared to those with a good understanding of cancer before diagnosis, which means that lack of education about cancer also contributed. to delays in diagnosis rates.

While these factors are all potential reasons why cancer diagnosis for ethnic minority populations is so delayed compared to white cancer patients, what is clear is that the longer it takes to get a cancer diagnosis, the the more difficult it is to treat and the greater. the risk of death.

Global data suggests that every month is delayed between cancer diagnosis and treatment

can increase the risk of death by around 10%, meaning that long delays in cancer diagnosis can have a negative impact on the livelihoods of ethnic minority populations living with cancer.

So although it’s been twelve years since Precious was diagnosed with CML, the 1000 voices not one report sadly shows that inequalities in cancer diagnosis between different ethnic groups in the UK is a huge problem.

“No need to feel shame”

Precious said: “What makes me sad is that we’re having this conversation in 2024.”

Speaking about the launch of the report and the campaign, Dr Robert Braun, Head of Hematology-Oncology at Bristol Meyers Squibb UK and Ireland Barnett Post: “The first step in the Cancer Equals campaign is to raise awareness of the issue of inequalities in cancer diagnosis between ethnic minority and white cancer patients in the UK.”

“The report shows that there is a seven-month delay in black people receiving cancer diagnoses compared to their white peers, which is shocking.”

“As a leading player in cancer care, we feel it is our corporate responsibility to address these issues. We encourage everyone to read the report and get involved in the campaign.”

Precious urges anyone who feels unwell to make sure they see a doctor.

She said: “If you don’t feel well, you know your body better than anyone. No need to feel ashamed. You don’t bother the NHS if you’re stupid.”

Even though Precious went through many negative experiences during her cancer treatment, the isolation she felt encouraged her to join various charity groups to meet other people living with cancer, to bond over the common experience .

Precious told the Barnet Post: “One of the best things that has happened to me after all of this is being part of a lifelong community and making great friends who understand the experience.”

If you would like to find out more about the Cancer Equals campaign, visit cancerequals.co.uk.

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