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Reaching out to black and minority ethnic communities to reduce cancer rates

Our series on how cancer affects different patient demographics looks at black and minority ethnic communities

Our series on how cancer affects different patient demographics looks at black and minority ethnic communities

Earlier this year, the Race Equality Foundation published a paper warning that understanding prevalence and experiences of black and minority ethnic (BME) people with cancer is hindered by a lack of data relating to these communities.

The author of the Better Health Briefing paper, Qulsom Fazil, lecturer in disability studies and behavioural science at the University of Birmingham, warns that healthcare providers have a poor understanding of the needs of BME communities.

She says that while there are several examples of best practice in this area, often led by the charity sector, there is a paucity of health education regarding cancer and limited awareness of the availability of support

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Our series on how cancer affects different patient demographics looks at black and minority ethnic communities


Picture: Christopher Woods

Earlier this year, the Race Equality Foundation published a paper warning that understanding prevalence and experiences of black and minority ethnic (BME) people with cancer is hindered by a lack of data relating to these communities.

The author of the Better Health Briefing paper, Qulsom Fazil, lecturer in disability studies and behavioural science at the University of Birmingham, warns that healthcare providers have a poor understanding of the needs of BME communities.

She says that while there are several examples of best practice in this area, often led by the charity sector, there is a paucity of health education regarding cancer and limited awareness of the availability of support services among BME communities.

The paper states: ‘There is clear evidence of a lack of focus, priority and urgency of the cancer needs of BME populations in NHS policy documents and in NHS cancer data collection exercises.’

Cancer care survey

Last year, NHS chief executive Simon Stevens issued an appeal for more BME people with cancer to share their experiences in a bid to improve care.

In the 2017 National Cancer Patient Experience survey, published earlier this year, 61,851 respondents identified themselves as white, compared to 456 mixed, 1,635 Asian, 934 black and 203 respondents who identified themselves in the ‘other’ category.

Black and minority ethnic statistics

  • Overall, people from Asian and mixed communities are 20%-60% less likely to get cancer than people from the white population.
  • British Asians report higher rates of depressive symptoms compared to white British people following a cancer diagnosis. 35.1% compared to 16.18%.
  • People from BME backgrounds are less likely to participate in clinical cancer trials – barriers include fear, stigma and mistrust of the healthcare system.

Source: Macmillan Cancer Support

NHS England says BME respondents reported a poorer experience of cancer care compared to white British patients.

In the survey, when asked whether they were given enough care and support from health and social services once their cancer treatment had finished, 21.9% black respondents said ‘no’ compared with 19.7% Asian and 9.6% white respondents.

Of the white respondents, 2.5% said there were more than 12 months between the first time they thought something might be wrong and then seeing their GP. This compared to 4.8% of Asian and 4.9% of black respondents.

Of those identifying themselves as ‘other’, 15.6% saw their GP five times or more about the health problem caused by cancer before they were told they needed to go to hospital compared with 11.5% black respondents, 11.1% Asian, 8.1% mixed and 6% white.

City inequality factors

Race Equality Foundation chief executive Jabeer Butt says recognising the experience of cancer in the BME community has changed over the past ten to 15 years:

‘Members of the BME population who arrived in this country after 1945 have seen a rise in cancer diagnosis – in line with the ageing process.

‘More people are seeking support. Also, another issue to consider is that BME people can often be concentrated in inner city areas and diagnosis is poorer there compared to other areas.

‘It may be due to a lack of access to primary care, but there are other factors to do with the person's knowledge of cancer, and what to do when they are starting to feel ill with which services to access.

'The NHS needs to ensure detection happens earlier'

Jabeer Butt

‘The NHS needs to ensure detection happens earlier, and when BME people are diagnosed their experience is improved at a distressing time.

‘The combination of the various factors means that by the time diagnosis takes place, the challenge of treating the cancer is higher. While the number of BME people being treated for cancer is smaller than other patient groups, their reporting of poorer experiences has been pretty consistent.’

Lucy Elliss-Brookes, head of cancer analysis at the National Cancer Registration and Analysis Service in Public Health England, maintains that cancer data is broken down by ethnicity where possible.

The Routes to Diagnosis data, which includes ethnicity data, is expected to be published in November by Public Health England,.

The data categorises the route the person with cancer follows to the point of diagnosis, in order to examine demographic, organisational, service and personal reasons for delayed diagnosis.

Cancer survival, deaths and occurrence in people from BME backgrounds

  • Asian people are between 1.5 and three times more likely to get liver cancer than the white people in England.
  • Black and Asian females over 65 years are at a higher risk of cervical cancer compared to white females in England.
  • Incidences of oral cancer among Asian people is higher than in any other ethnic group.
  • Black people in the UK are nearly twice as likely to be diagnosed with stomach cancer.
  • Breast cancer deaths in women born in West Africa and living in England and Wales are 30% higher than the average for England and Wales.

Source: Macmillan Cancer Support

 

Analysis before design

Barry Quinn, Macmillan director of nursing for cancer at Barts Health NHS Trust, has been working in the cancer sector for three decades across London and agrees that the current healthcare model as a whole doesn’t always ‘lend itself to equality and diversity’.


Barry Quinn

He says that equality and diversity in healthcare requires health professionals to listen to the individual and to respond to their needs and concerns.

‘Health and social care plans are often designed to adapt it to suit people from BME backgrounds and cultures afterwards, but before the plan is designed we need to meet, listen, learn and respond.

‘The traditional model of asking users to be engaged to design healthcare services may not work for less visible groups, the challenge is for us as the decision-makers to come out of the hospital and traditional healthcare settings and to meet others in the heart of their local community.

‘It might be uncomfortable for some doctors and nurses to step away from the hierarchy model of medicine and the healthcare system, but it’s ultimately about person-centred care.

'I have met some people from a variety of BME backgrounds and cultures who say they are not likely to go to the doctor unless they are at crisis point and it is really necessary.

‘I would urge nurses not to ever generalise – if they hear the concerns of the individual, whatever their background – and listen and learn – we may be better able to support people through their treatment.’

Heather Nelson is chief executive of the Black Health Initiative, set up in 2013 as a community engagement organisation working towards equality of access to health and social care.

She says the charity started BME Cancer Voice in 2014 and has been working nationally in various cities across the UK to support those affected by cancer by setting up ‘culturally appropriate’ support groups.


The Men at Risk billboard posters appearing across the country from Prostate Cancer UK

Ms Nelson explains how the language nurses and other health professionals use when talking to someone from a BME background is important.

‘They need to be clear and consistent about what they are calling cancer. For example, someone may be told they have a tumour, but they don’t equate it with cancer or they may not understand the word malignancy. Awareness of taboo subjects either real or perceived is key, some people really don’t even want to use the word cancer because to them it equates death.

‘BME people are not a homogenous group. The issues a South Asian woman may face may be different to those of a Chinese man or a Caribbean woman. Just because you know about one group doesn’t mean you know about them all.

‘Some patients from BME backgrounds may be viewed as aggressive, but it is just their way of talking using their hands. Cultural awareness from health professionals is good, but behaving towards patients in a culturally appropriate way is better.’

Getting the message across the families

Orin Lewis is co-founder and chief executive of ACLT, a charity that help patients and families living with blood cancer and illnesses where a matched donor is required to save a life.

‘Getting to the initial diagnosis and starting line can be quite fractious for some BME families, but like their white counterparts it’s a world nobody wants to be in'

Orin Lewis, co-founder of ACLT

How nurses can improve cancer care for BME people

  • Be aware of possible language barriers and the need for a translator. If appropriate, ask patients if they need someone familiar with them or a notepad to write information down.
  • Be culturally aware – lack of cultural awareness is often quoted as a reason for worse access to diagnostic and cancer care in BME communities.
  • Communicate in a way that is understandable.
  • Avoid generalisations and stereotyping around lifestyle and spiritual preferences.

Source: Macmillan Cancer Support/Black Health Initiative

Mr Lewis and Beverley De-Gale founded the charity in 1996 after finding out their six-year-old son Daniel needed a stem cell transplant in order to win his battle against acute leukaemia.

In 1999, Daniel De-Gale became the first black individual in the UK to receive a stem cell transplant from an unrelated donor.

However due to complications with his health, he passed away from multiple organ failure in 2008 at the age of 21.

Mr Lewis says: ‘We try to bring together clinicians and patients in a harmonious way and encourage clinicians to appreciate the patient beyond simply their physical needs.

‘With blood cancers we work hard to ensure families from BME backgrounds understand the process and the terminology involved.

‘Getting to the initial diagnosis and starting line can be quite fractious for some BME families, but like their white counterparts it’s a world nobody wants to be in.

 ‘However, once they are there, if the clinicians can try to understand and appreciate any cultural or religious differences then we know that care can be excellent whatever the background of the patient.’

Stronger Knowing More campaign


Sophie Smith

One in four black men will get prostate cancer at some point in their lives. Black men are more likely to get prostate cancer than other men in the UK, who have a one in eight chance of getting prostate cancer.

Last year, Prostate Cancer UK launched the Stronger Knowing More campaign, in a bid to make sure black men know their risk of prostate cancer and what to do about it.

Prostate Cancer UK specialist nurse Sophie Smith says: ‘Knowing the risk is the most important and best line of defence for prostate cancer a man can have. Since we started the campaign the specialist nursing team, which has 12 members, has noticed an increase in black men asking about the risk.

'The team has been attending events where the black community might be just to talk to men about their risk and open up that conversation.

‘We’re continuing to raise our profile through social media campaigns, some men are conservative about talking about 'private and personal things', but it is important to let them know their risk and how treatable prostate cancer can be at an early stage.’

 

Further information

How cancer affects different patient demographics – collection of previous articles in this Cancer Nursing Practice series

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