Analysis

Cancer care: how can nurses help reduce inequalities faced by BAME patients?

Cancer patient experience research commissioned by NHS England reveals ‘deeply disturbing’ findings

Cancer patient experience research commissioned by NHS England reveals deeply disturbing findings

  • Cancer patient experience survey shows disparities according to ethnicity
  • Black and Asian patients were more likely to feel only partially involved in care decisions
  • Advice on how nurses can help drive improvements by understanding the barriers
Picture: Alamy

A national survey of people with cancer has revealed deeply disturbing findings from some black and Asian respondents, a leading charity says.

The results of the latest annual National Cancer Patient Experience Survey , which looks at peoples experience of cancer care, reveals that black and Asian people were more likely to say their treatment options were only partially explained or not at

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Cancer patient experience research commissioned by NHS England reveals ‘deeply disturbing’ findings

  • Cancer patient experience survey shows disparities according to ethnicity
  • Black and Asian patients were more likely to feel only partially involved in care decisions
  • Advice on how nurses can help drive improvements by understanding the barriers
Picture: Alamy

A national survey of people with cancer has revealed ‘deeply disturbing’ findings from some black and Asian respondents, a leading charity says.

The results of the latest annual National Cancer Patient Experience Survey, which looks at people’s experience of cancer care, reveals that black and Asian people were more likely to say their treatment options were only partially explained or not at all.

They were also more likely to report being only partially involved in treatment and care decisions.

‘Most alarming is the breadth of disparities across the survey’

‘It is hugely concerning,’ says Macmillan Cancer Support head of policy Sara Bainbridge.

Results from the survey, commissioned by NHS England, are on the whole positive, with the almost 60,000 people who responded rating their care as 8.8 out of 10.

Yet beneath the surface the findings highlight inequalities.

‘Most alarming is the breadth of disparities across the survey,’ says Ms Bainbridge, pointing out that there are statistically significant differences for three quarters of the 61 questions.

Picture: iStock

Disparity in scores by ethnicity for many of the survey questions in the 2019 poll has been highlighted in previous CPES reports.

‘We need all healthcare professionals in cancer care to work hard to understand the reasons, so that action can be taken to address them,’ says Ms Bainbridge.

If anything, the impact of COVID-19 on cancer services – NHS England data show a 20% fall in people starting cancer treatment at the peak of the pandemic in April compared with the same month in 2019 – strengthens the case to urgently tackle inequalities, she says.

2.4 million people

in the UK were waiting for cancer screening, tests or treatment as of 1 June 2020
Source: Cancer Research UK

‘It’s all the more vital now that this is something that’s taken seriously.’

Personalised care is important for everyone

Macmillan says anyone diagnosed with cancer must be included in detailed conversations about their treatment with healthcare practitioners, with everyone playing an active role in making decisions about their care, regardless of their background.

Tailoring advice to the individual is key, the charity says.

‘Personalised care is important for everyone, because each person’s cancer diagnosis and experience are different,’ says Ms Bainbridge. ‘It’s crucial that those working in cancer services and health professionals are aware of this disparity in patient experience, bearing this in mind when asking about holistic needs, creating a care plan or offering information and support.’

What the National Cancer Patient Experience survey found

Now in its ninth year, the National Cancer Patient Experience Survey is designed to monitor patient experience of cancer care, provide information to drive local improvements in quality, assist commissioners and providers of cancer care, and inform the work of the various charities and groups supporting people with cancer.

Overall, there are statistically significant differences in responses by ethnicity for three quarters of the questions in the survey.

59,369 responses

were analysed in the 2019 National Cancer Patient Experience Survey

How patient experience differed between ethnicities

Results from the survey, based on responses from 59,369 people, showed:

  • People with cancer who are black or Asian are more likely than those who are white to say their treatment options were explained only partially or not at all before they started treatment – 15% of white respondents said this compared with 18% of black respondents and 20% of Asian respondents
  • People with cancer who are black or Asian are more likely than those who are white to say they were only partially involved in decisions about their care and treatment – 18% of white respondents said this compared with 26% of Asian respondents and 27% of black respondents
  • Asian respondents scored the lowest on 15 questions, including length of wait for diagnostic tests, if possible treatment side effects were explained in a way they could understand, and being able to contact their clinical nurse specialist
  • Black respondents scored lowest on five questions, including if they felt they were given enough care and support from health and social care services during and after their treatment

(Source: National Cancer Patient Experience Survey 2019)

Cancer nurse specialists in particular can play a pivotal role in driving improvements. ‘It’s key they understand what the barriers are to people from black, Asian and minority ethnic (BAME) communities in their area in accessing and taking up support and services,’ says Ms Bainbridge.

4% of respondents

identified as being of black, Asian or mixed ethnicity, 89% said they were white and the rest didn’t say
Source: National Cancer Patient Experience Survey 2019

Another charity, Prostate Cancer UK, would like to see more focus on risk factors in public health messaging and programmes to raise awareness, rather than concentrating primarily on symptoms.

Importance of understanding the risk factors

Laura James, who leads a specialist nurse team as the charity’s head of clinical services, says: ‘Black men have an increased risk of prostate cancer, but awareness remains lower in their community.’

One in four black men will get prostate cancer in their lifetime, compared with one in eight for others.

When the disease is at an early stage, often there are no symptoms. ‘That’s why it’s so important to understand the risk factors,’ says Ms James.

Case study: a feeling of being missed out

Sonia Sharma

When Sonia Sharma’s father was diagnosed with prostate cancer the family was given written information.

‘I’m reading the literature and it’s telling me that white men are less susceptible and black men are more and I thought: “What about Asians?” We’re a massive demographic but we were not mentioned,’ she recalls.

The feeling of being missed out added to her family’s difficulties in coping with an upsetting and worrying diagnosis, she believes.

‘From the outset, it felt like a black hole’

‘We were receiving all of this information that didn’t relate to us. From the outset, it felt like a black hole. It was very frightening,’ says Ms Sharma.

‘We felt very alone. We didn’t know anyone who’d had prostate cancer and it’s not spoken about. Before it happened to my dad, I knew nothing about it.’

Following her father’s death in June 2019 she contacted the charity Prostate Cancer UK, with the aim of trying to raise awareness among the Asian community and opening up discussion.

‘I want more of a feeling of inclusion, so people know they’re not alone,’ says Ms Sharma. ‘There are others in a similar boat, but they’re just not speaking about their experiences – and that’s why we don’t know about it.’

‘We weren’t given the resources to make us feel included’

Throughout her father’s treatment she felt information was lacking. ‘I’m not sure whether it was to do with our ethnicity or that the centre itself wasn’t running as efficiently as it should have been,’ says Ms Sharma.

‘But ethnicity definitely comes into play when we weren’t given a sense of community or the resources to make us feel included. They didn’t think about this at all – it was completely off their agenda.’

Information specifically targeted for an Asian audience would have helped, she believes. ‘It’s become one of the most prevalent cancers in the UK, so why are we not talking about it? It’s frustrating,’ says Ms Sharma. ‘I never thought it could happen to us, but it did.’

‘We want people to be advocates for themselves’

She agrees that black men tend to report generally poorer experiences of care and treatment. ‘It can flow through the whole pathway, from conversations at the beginning about whether or not treatment has been fully explained, to later interactions and experiences.’

Improving the involvement of people from BAME backgrounds in their care begins with developing patients’ own knowledge and understanding of their condition, she believes.

‘We want people to be advocates for themselves,’ says Ms James. ‘It’s about making the time to explain why they need treatment, then they feel more confident to ask questions. For a lot of people, nurses are the gateway to knowledge.’

Case study: ‘The doctor was dismissive of me’

When Paul Campbell was diagnosed with prostate cancer last year he wanted to have a general anaesthetic for a biopsy procedure. Having never had an operation before, he felt nervous.

Paul Campbell

‘But when I turned up I was told: “We only do local anaesthetic here and that’s the only option.” It felt like a put up or shut up kind of situation,’ he recalls.

‘They didn’t understand that over the previous weeks in my head I’d prepared for general and then the goalposts were being moved. I felt bullied in terms of treatment options. The doctor started talking over me and then he went into the corridor outside and spoke about me to his colleagues. I followed him and said: “Why are you doing this? You’re supposed to be talking to me.”’

Eventually staff agreed he could have a general anaesthetic. ‘If I hadn’t pushed, I’d have been stuck with a decision someone else made,’ says Mr Campbell. ‘As a black man, I’ve faced many challenges over the years. He was dismissive of me, but I was confident enough to speak up for myself. I did it not just for me, but for those who can’t speak for themselves.’

A few years earlier he’d had to push to get a men’s over-forties health check-up at his GP surgery, following the advice of adverts on TV. ‘They point-blank refused at first,’ says Mr Campbell. ‘There was no reason why. It was a government campaign.’

As a result he discovered he was diabetic, with regular blood tests eventually uncovering an elevated level of prostate-specific antigen (PSA). ‘I had no symptoms, so if I hadn’t been pushy in those situations I’d never have known,’ he says.

While evidence clearly shows an elevated risk of prostate cancer for black men, he feels information wasn’t targeted towards his community. ‘In my circle, where I go, what I read or download, it just wasn’t there,’ he says.

Since his own diagnosis, aged 49, he has encouraged other family members to seek check-ups, with several discovering they also have prostate cancer. ‘I’ve become passionate about talking about it.’


Further information

NHS, Picker (2020) National Cancer Patient Experience Survey 2019

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