‘Had I not been pushy, it would have been stage 4’: The fight to improve outcomes for black cancer sufferers
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Getting tested for prostate cancer should’ve been easy for Paul Campbell. He wanted a check-up after seeing an advert on TV calling for men in their 40s to get thorough health checks.
He asked his GP, but was immediately questioned about why he – a man who seemed otherwise healthy – would want a check-up.
“I had to fight my ground, I had to raise my voice. And eventually, I got the test,” Mr Campbell told The Independent. He was later diagnosed with aggressive prostate cancer.
“Had I not been assertive and pushy, by the time I found out, it would have been stage 4.”
Mr Campbell was far from alone in his experience. New research from the NHS Race and Health Observatory found “alarming levels” of discrimination towards patients from ethnic minorities, and huge levels of mistrust in the NHS system.
The survey of 2,680 people found only 55 per cent trusted primary care to meet their health needs most or all of the time, while a third of South Asian participants said they either rarely or never trusted primary care to meet their health needs.
Half of the participants (51 per cent) reported some form of discrimination due to their ethnicity or other characteristics like gender or socioeconomic status, with 49 per cent of black participants and 38 per cent of Asian participants saying they felt they were treated differently.
On Friday, the NHS Race and Health Observatory roundtable brought together 20 key partners from local communities, the volunteer sector, the government and broader NHS to discuss the findings.
Professor Habib Naqvi, Chief Executive, NHS Race and Health Observatory, said: “We cannot have a two-tier NHS based upon patient ethnicity, background or circumstances. This report reflects the clear need to bring speed and urgency to reform the NHS, so that patients do not face discrimination and systemic barriers when seeking healthcare. “
These issues have a real impact on health outcomes.
Cancer Research UK inequalities lead Karis Betts said that while white people in the UK are much more likely to get cancer than people from ethnic minority communities, there was plenty of research that showed people in those communities were more likely to be diagnosed later.
“We know that a lot of ethnic minority groups are more likely to get a late-stage diagnosis,” she said.
‘Fear and mistrust’ barriers to timely care
Mr Campbell, who is now the chief executive of charity Cancer Black Care, said mistrust and systemic racism were key barriers for black people and people of colour receiving timely cancer diagnosis and appropriate treatment, as well as a lack of symptom awareness and fear that cancer was a death sentence.
“Because there’s not many black faces available in terms of medical staff, oncologists, and others aren’t culturally sensitive, that can make individuals feel misunderstood,” Mr Campbell said.
The NHS Race and Health Observatory report found there was a low level of confidence in medical advice and diagnosis of skin conditions in patients with different skin colours.
Naman Julka-Anderson, Allied Health Prof & Clinical Adviser at Macmillan Cancer Support, said this has been a historical problem in radiation therapy, where patients are told to look out for a “redness” reaction, regardless of the patient’s skin type.
“If you tell someone they’re going to go red and they’re black, firstly, they won’t believe you. They won’t feel like they’re being listened to or trusted,” he said.
Mr Julka-Anderson, who is a therapeutic radiographer, has worked through Macmillan and his own research to change that. He said updating the language around these issues can help in numerous ways.
“If it’s caught earlier, we’ll be cost-saving further down the line as well: I think that’s the impact of being inclusive,” he said.
Professor Peter Johnson, national clinical director for cancer at NHS England said working out culturally effective ways of informing people about cancer was “really important” as the service works on its National Cancer Plan.
He said further work with community alliances – which has helped boost the number of black men getting diagnosed with early-stage prostate cancer – was “critical” to cancer care in the country going forward.
“I hope that will be a big feature of our cancer plan. How we do this, not just at a national level, but a very local and a very group-specific level, helping people to be diagnosed in a timely way and accessing treatment,” Prof Johnson said.
‘Change is coming’
Mr Campbell said it was vital to break down the fear and stigma to ensure Black people and people of colour got the best possible holistic treatment, and small charities were best placed to help.
“We want to provide culturally appropriate and relevant information on all aspects of cancer care, removing fear, bitterness and any misunderstandings,” he said.
Mr Campbell, who has been speaking to MPs and ministers about how black people are disadvantaged in cancer care, said he feels positive that the government was serious about improving outcomes.
“It’s slow, but change is coming,” he said.
