Caring for People with Cancer

from Black and Ethnic Minority Groups

1. Introduction

Aims

Despite significant advances in improving cancer care, difficulties remain in ensuring equal and

ready access to the best information, treatment and care. In particular, people from black and

ethnic minority groups often experience distressing gaps in care. Although there is a growing

literature on the needs of patients as viewed by themselves, little research has been undertaken

on the views and experiences of those caring for them. With an interest in filling this gap, as

well as learning about potential training needs, Macmillan Cancer Relief (MCR) funded this

short study, involving discussions with a range of staff working with patients with cancer from

black and ethnic minority groups.

Methods

A qualitative approach was designed at the outset, with focus groups being seen as an ideal

medium through which to explore barriers and constraints to service provision. Initially, six

focus groups were planned to be undertaken in three areas (London, Birmingham and

Manchester), to be composed of Macmillan postholders in these areas. Following difficulties in

recruitment, only five groups were held in total: three in London and one each in Birmingham

and Manchester.

Initial recruitment was undertaken by Macmillan Cancer Relief in order to avoid divulging the

names of postholders to the research team. All postholders in the agreed areas were sent an

invitation from the Head of Education, Development and Support to take part in a group, with a

supplementary letter from the researchers with a reply slip and consent form. These comprised

about 120 in London, 70 in Birmingham and 50 in Manchester. Because of an initially limited

response, a reminder letter was sent to the postholders in Manchester. A strong response in

London meant that a third group was held there. Altogether, 44 people responded with a

willingness to take part, of whom 28 came to the meetings (others could not make the set dates

or did not attend the agreed meeting).

Of the 28 postholders taking part, 22 were nurses, with a variety of specialisms but a strong

representation from palliative care; the remainder comprised two social workers, one

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occupational therapist, one welfare rights officer, one consultant physician and one person

involved in an information project. All but three were women. Virtually all worked within the

NHS, primarily in hospitals, but two worked in the private sector. The great majority were white

(primarily British, but a few other), but there were also one person of Chinese origin, one Asian,

one black South African and one woman who was black British.

All discussions were taped and transcribed and analysed in full for key themes.

The Report

This report seeks to relay the views of nursing and other staff, set out in terms of particular

issues. It starts with the problem of language and then continues with cultural difficulties and

issues arising around racial bias. It concludes with some recommendations, as voiced by the

participants themselves. Although some of the difficulties experienced by patients are noted, the

perspective of this report is very much that of the nursing and other staff involved in the

research, rather than patients themselves.

It might be noted that, although varying somewhat by location, the participants worked with

patients from a wide range of areas. This included people from various parts of Africa (Nigeria,

Somalia and South Africa were given a particular mention), the Indian sub-continent, the

Caribbean and Eastern Europe, especially Kosovo (but Poland, Russia and Romania were also

noted). Patients from Turkey, Greece and Cyprus were also not uncommon. Some mentioned

working with patients who were Arab, Chinese, Japanese, South American and Spanish. Many,

of course, were second or third generation. A few mentioned that some of these were refugees,

asylum seekers or of ‘indeterminate status’. Various religious groups were also mentioned,

particularly Moslem, Hindu and orthodox Jews, as well as born-again Christian. Only two

participants said that they encountered very few people from black and ethnic minority groups.

Some very clear detailed messages emerged from these discussions. Perhaps the strongest was

the sense that working with patients from black and ethnic minority groups was often both a

challenge and a considerable strain for those involved. It was not only the source of a number of

practical problems but, more fundamentally, could cause them to question their assumptions

about appropriate care. They were often left with a feeling of inadequacy in fulfilling their

professional responsibilities. Further training and support would be very much welcomed.

2. Language difficulties

Some general issues

Although a number of different problems arising from working with patients from black and

ethnic minority groups were noted, the most easily explored were difficulties when a patient

could not speak English. Time and again, this created significant barriers between staff and

patients. It proved an issue throughout a patient’s experience of cancer, often beginning right at

the outset with the communication of the diagnosis but continuing during the treatment phase

and into the provision of palliative and terminal care.

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Where nurses or other staff found themselves unable to communicate directly with a patient, they

found that they needed to draw on other skills to work out how he or she was feeling (‘It’s a bit

like reading in the dark’). The principal problem seemed to be not knowing exactly what a

patient understood. It could be important to ensure, for instance, that people were aware of

potential side effects of treatment. An example here was the possibility that someone on

chemotherapy might get neutropenic sepsis in the middle of the night. On some occasions, this

could affect decisions about the timing or nature of treatment, as doctors were reluctant to give

treatment if they were uncertain that it could be given safely. There were also issues of patient

compliance, if patients did not understand fully what was wrong with them.

One nurse suggested that language difficulties sometimes meant that patients communicated the

wrong message. She noted this particularly with respect to pain, when the only pain for which

there was easy language was physical pain, but the problem might more likely be emotional.

Having an accurate awareness of the situation became particularly acute in the case of palliative

care. A number of nurses working with the dying spoke of their dilemmas in ensuring that

patients were aware of the situation, although this was not, of course, limited to those with

language difficulties. Indeed, some explicitly argued that this was not a cultural issue, but an

individual one. The nature and potential efficacy of treatment was not always fully spelled out.

Sometimes, a patient would think their prognosis was worse than it was due to assumptions

arising from the word ‘cancer’ (‘They think they’re dying and sometimes they’re not’).

Some nurses did feel able to find ways of communicating with patients, despite the lack of a

common language. They spoke of using touch and holding hands in an attempt to show

empathy. One spoke of learning from patients from the same culture who did speak English,

with respect to the kinds of issues raised (‘You know these other women will have those, but

can’t communicate it’). But a lack of easy communication did directly affect their ability to

build up a relationship with patients, seen as a vital part of their care, and this was the cause of

considerable concern:

‘Often, our communication is reduced to nods and smiles and some very basic

communication about the types of treatment and things – you feel they really miss

out.’ (paediatric nurse)

‘It tears you apart sometimes, because you’re not doing what you feel you should

be doing. And you are not giving an equitable service to people. It’s very, very

difficult as a health professional, when you know what you could be doing but

you can’t.’ (palliative care nurse)

Language difficulties often meant that professionals dealt with the man in a family, although

there was a need to talk directly with the woman. One nurse discovered that, for one Bengali

family, all the men went to the mosque on a Friday morning and the women met for tea. She

therefore went on home visits on a Friday, with an interpreter, and found it immensely helpful.

She was able not only to pass on information to the woman, but also to talk to friends and

relatives who added information or raised other problems. Several participants noted that

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women with apparently no English could sometimes express themselves better than expected,

when men were not around.

One clear outcome of all these difficulties was that caring for patients who did not speak English

took considerable time (‘You’ve got to have much more time allotted to care for these patients’).

Written information

Discussions of difficulties with language moved swiftly into discussions about the shortcomings

of various solutions to support the process of treatment and care. Written information was seen

as one way around the patient’s understanding, but this was not always available in the

appropriate language. Even where booklets did exist, these were not always read, as many

patients could not read in their own language:

‘People often will proudly show me those fantastic booklets full of information,

Bacup information, all sorts of things…sitting on their mantelpiece, but it’s clear

that no one’s ever opened it or read it.’ (palliative care nurse)

Working with interpreters

A lot of attention was given to the issue of working with interpreters. Some had excellent

experience in obtaining and using interpreters and were very impressed with the helpfulness and

empathy of the people involved. They noted that the interpreter made a real effort to establish a

relationship with the patient for a few minutes prior to the medical discussion. Some specialised

in medical issues. Staff often tried to keep the same interpreter for a patient, in the interests of

continuity of relationships.

But, more commonly, there were problems here. Some of these were logistical, with interpreters

needing to be booked well in advance, which was not always possible because of unforeseen

need, or simply being unobtainable. There was considerable variation in access to interpreters,

both by location and by the ethnic group of the patient (‘We can access the commoner languages,

but we do struggle with patients coming from further afield’). Some hospitals in areas with a

large ethnic minority population had their own bank of interpreters; others had to access services

from elsewhere. Interpreters’ time could also be wasted in community visits, where a patient did

not inform anyone that he or she was back in hospital, because of language difficulties.

Much more worrying, however, were problems deriving from the skills or willingness of the

interpreter to carry out their task. A few suggested that some interpreters were not too expert in

English, hampering their abilities. But the greatest problem, noted by many different

participants, was the simple unwillingness of interpreters to pass on certain messages to the

patient. This sometimes consisted of a direct statement that ‘I can’t say that to the patient’ and

sometimes of a tendency to amend the message given, adding information or changing its nature.

One participant said an interpreter told her that she had informed a patient that there was nothing

to worry about, when in fact the discussion was intended expressly to allow the patient to

articulate her worries. A number of people were concerned about this issue:

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‘Sometimes you want to tear your hair out and go “I just want you to tell them

what I’m saying. I don’t want you to give it a big spin of your own and actually

say something completely different”.’ (social worker)

These problems were particularly acute when there was a need to give a diagnosis or poor

prognosis or when a patient was close to death.

Participants were conscious that they could not really know whether their words had been passed

on in full and this, in itself, was a source of concern (‘I’m never one hundred per cent sure that

the information I’m giving is getting across in the way that I intend it to’). Some noted situations

where there was room for considerable doubt, such as when a nurse had given a long and

complex message and the interpreter used very few words in the other language. One participant

pointed out that she could gauge accuracy to some degree from the nature of the questions

coming back.

This problem was the source of considerable frustration for those involved, including a sense that

it precluded them from giving proper nursing care:

‘Honesty in caring for people is a very important part of our delivery of care –

how you can open a discussion with somebody, when they don’t know half the

facts or they’re saying things that you know are totally unrealistic?’ (palliative

care nurse)

It also raised problems in working with a family:

‘Where the interpreting isn’t happening [properly], the family start questioning

who is being honest. Is the interpreter telling them the truth or is the doctor

telling them the truth? The family have questioned me and said “Who do we

believe?” It makes me feel very uncomfortable, because I feel I’ve failed, we

haven’t done it the right way.’ (palliative care nurse)

There were also practical problems in working with interpreters. One nurse said that she used

her hands when she talked and this was not, of course, passed on in the interpretation. The same

was true of inflections in the voice. Some participants wondered how much they should say

before allowing the interpreter to translate (‘should it be one sentence at a time?’) or who they

should look at. An Asian nurse said that she understood enough of some languages to know

when the translation was good, but if she queried it, it put her into an invidious position with the

interpreter. Although some interpreters were trained in medical vocabulary, this was not

generally an issue, because nurses and others in any case tried to communicate in lay language.

Other difficulties were also noted. Sometimes, the use of an interpreter breached cultural norms,

such as where a male interpreter had to discuss intimate issues with a female patient. This could

cause problems for patient and interpreter alike. Sometimes, patients did not like to use

interpreters from their own ethnic community, because they feared that their private difficulties

would become the source of gossip (‘everybody knows everybody within the Punjabi

community’). It was not unknown for a family to turn away an interpreter for these reasons.

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A number of participants were also very concerned about the impact of this work for the

interpreters involved. They were seen to work long hours and it was tiring work. Giving bad

news was not easy for trained health professionals, so there was considerable sympathy for the

interpreters who were in no way prepared for the task. Indeed, some interpreters working in a

hospital might be faced with doing so more than once in a day (‘It must be a horrendous job, if

you’re continually giving bad news’). Moreover, being around some very ill people could be

difficult, as could explaining complex intimate procedures, such as stoma care. It was likely that

interpreters had no built-in professional support, even when they were taking on difficult

problems for both patients and their family. The need for training interpreters in such

discussions and offering them some support was stressed by a number of groups. In one group,

it was suggested that there was a need for people trained both as interpreters and as counsellors.

A few people had experienced telephone interpretation, particularly for less common languages.

This was not only completely inappropriate for giving bad news, but also seen to be very

frustrating for the professionals involved (‘You’ve absolutely no idea who’s on the end of the

phone’).

In contrast to the use of professional interpreters, sometimes other people who spoke the

language were brought in to help. One participant noted that sometimes a patient would ask

someone who happened to be in the waiting room to translate, which was felt to be inappropriate

when discussing distressing issues. Occasionally, hospital staff – whether clinical or

administrative – were asked to do so, not only causing potential emotional stress but also adding

to the pressures on their workload. On the other hand, some said there was a policy that bad

news was never given unless a professional interpreter was present.

Using family members

Where there was no other interpreter, participants found that a member of the family would often

be asked to translate for the patient, which also brought considerable problems. Some of these

were practical; for instance, those working with children needed to get information to a mother

because she would be the principal carer, but it would be the father who came in for the

information.

But there were deeper problems as well. A number of participants felt it was not fair on family

members to be asked to undertake this role, especially where it was children translating for their

parents. In addition, the involvement of relatives meant that a nurse’s relationship with the

patient was always mediated by someone else. This caused real conflicts for them, especially

where the family made a decision not to tell the patient the diagnosis:

‘You want to work within the family unit, so the care can progress well, because

you want to keep everyone if possible cohesive. Your care is focused on the

patient, but the family unit is incredibly important in that.’ (palliative care nurse)

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‘I feel sometimes they’re getting a second rate service, compared to families that

have got open and honest communication going on between them. And that can

leave you in a bit of a dilemma.’ (palliative care nurse)

There was widespread concern about patients not knowing what they were being treated for.

Although this could happen with English-speaking patients, normally they would eventually ask

and the nursing staff would tell them. The language barrier, combined with protective relatives,

changed the dynamics here. One Cypriot woman, for instance, who had not been told her

diagnosis, was told by her family that she was being given a ‘special antibiotic’ rather than

chemotherapy; she went back to Cyprus and died soon after. A seriously ill man who had no

hearing and little eyesight did not even know he was having treatment, much less what it was for.

Cases of insufficient planning for children when a single parent’s death was imminent were also

cited. Some relatives also refused written information on behalf of the patient (‘My mother

wouldn’t want to read that, thank you’). For some patients, this might be a question of illiteracy,

but it was also felt to be a method of protecting them.

In some cases, nursing or other staff were kept completely away from the patient by a protective

relative. One nurse described a young Pakistani patient who had breast cancer for over six

months and had been said to be refusing treatment. Her husband insisted that she did not want to

talk with a nurse and she was never allowed to see the patient alone. A palliative care nurse

noted that relatives could readily refuse her services (‘they have the luxury of stopping you

coming if they want to, because you’re not the core primary care team’). A number of

participants had the experience of getting what one called a ‘cold and frosty’ response from

family members.

Again, these situations caused a lot of concern to the nursing and other staff involved. Although

they told relatives that, if asked, they would explain the diagnosis to the patient, in practice many

patients were never informed because of language problems. Many spoke of the sense that they

were applying double standards or colluding with relatives, which made them very

uncomfortable:

‘Once you’ve gone along the path of colluding with the family and not telling the

patient, it makes it very difficult. You can’t then dive in and tell the patient unless

they straightforwardly ask “what is wrong with me?”…. You can’t collude with

the family and be honest with the patient. The two don’t go together.’ (palliative

care nurse)

‘We hope to have a partnership with our patients, for our patients to tell us what

information they would like and at what stage. We hope not to go down the route

of a third party dictating, whether it’s a parent or a partner. You throw a very

explosive bomb in the mix with ethnic minorities, because you can buy yourself

into that trap of “well, I’m going along with what the family want” and you lose

sight of what the patient wants.’ (lead cancer nurse)

Several participants also spoke of a sense that the patients were ‘colluding with the not

knowing’, because they suspected that they gained some sense of their diagnosis from all sorts of

clues (‘Sometimes, you can just tell in their eyes that they know’).

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In some hospitals, the patient had to sign a consent form for chemotherapy and therefore had to

have some idea of what they were being given, although it was thought that relatives had signed

in some cases. Some doctors refused to do surgery where a patient did not know what it was for,

because of possible side effects. A few participants said that they had never cared for a patient

who did not know their diagnosis.

3. Cultural differences

Dealing with cultural differences seemed to be even more complex for nursing and other staff.

Although many clearly enjoyed learning about different cultures, the issues raised could also be

the source of some anxiety for them. A wide range of difficulties were recounted, ranging from

primarily practical ones to those which raised serious internal conflicts for them.

A range of issues

Participants described being confronted with many new and different ways of coping with

illness, dying or death. With experience, some of these became familiar, where there was a large

ethnic minority community in their area. It was noted that Bangladeshi people could be reluctant

to indicate pain, whereas certain others might take to their bed more readily. People from a

number of cultures, such as Chinese and Turkish, insisted on providing large amounts of food for

a patient, even when it was not appropriate for the medical condition (‘not feeding their father

was the same as killing him in their eyes; they were doing it out of love’). Some cultures were

found to engage in a lot of wailing around an ill person. One described a Philippine family’s

unwillingness to sleep in a flat where someone had died, because of a fear of ghosts.

In most of these situations, the nurses and other staff took a general interest and tried to fit in.

They sought to protect the patient, where possible, for instance with respect to feeding, or other

patients around them, such as where large families in a state of emotional distress crowded into a

small bay (‘you do the best you can’). They tried to learn about the key cultural issues for their

work, such as bereavement rites for those working in terminal care, or at least how to gain access

to such information. Some spoke of having written information readily available; others noted

that their hospital chaplaincy team were very helpful in providing advice. They agreed it was

impossible to memorise all the different approaches to illness, death and dying, especially as

there was no certainty that a particular individual followed a given religious or cultural practice.

Certain situations created practical problems for staff, in terms of responding to need. A

common scenario was a bereaved Moslem widow with little or no experience of negotiating

certain day-to-day activities, such as keeping a bank account or paying bills, suddenly needing to

manage her own and her children’s lives. A social worker described one woman who had never

been out of the house without the escort of a male relative. Some effort was made to find

suitable support groups, involving women from the same background, to help in such situations.

One participant described having to arrange for a family member to come from abroad during a

long period of mourning.

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Patients with problems associated with immigration could be the source of particular difficulties.

A palliative care nurse said that they could often stop deportation as long as someone was being

treated, on the grounds that they would not get equivalent treatment in their country of origin, but

once treatment stopped, this argument no longer held. Bereavement benefits could be

particularly complex for people with polygamous marriages (‘There’s all sorts of rules about

what you can and can’t get’). Sometimes, such people had difficulties in obtaining help from a

GP.

In one group, several issues arose with respect to the use of pork products. It was noted that

some insulins came from pork, as did some salivary preparations; moreover, some dressings

were made from pig skin. Nurses needed to be aware of this; one had not been aware and was

very distressed when she learned that she had treated a patient inappropriately.

Another issue was patients who wanted to return to their country of origin when they were close

to death. This was quite a common wish, but often not properly planned for and left too late to

be a practical possibility. It was particularly difficult for nursing and other staff where the

patient was inadequately informed about the seriousness of his or her condition (‘I find that quite

difficult when my heart is saying this woman needs to be with her family, she’s not going to see

them again…’). They spoke of trying to be clear to patients of the need to move soon, but this

was not always listened to. A few experienced difficulties arising from expectations of families

that the NHS could pay for the trip (‘It is very difficult, because relatives do say some very

unpleasant things to you when they are upset’).

Coupled with a concern about the timing of patients’ going home was a deep distress about the

situations they were likely to confront. A number of nurses spoke about their sadness that such a

decision could entail a total lack of medication at the other end. One spoke of a patient returning

to Sierra Leone to see his wife and family, who would end up in a refugee camp (‘You know

that’s a brave choice, because once the medication’s run out, there won’t be any more’). One

nurse spoke of becoming ‘paternalistic’ towards patients in this situation, trying to persuade them

to stay, but others felt it was up to the patient (‘My feelings are secondary to what the patient

needs and wants’).

But a number of issues raised by cultural differences entailed some concern about their own

professional practice. Participants were very concerned not to breach cultural norms, but also

found it was easy to do so unknowingly. This could create a strain between them and the patient

or family:

‘I went into an orthodox Jewish household when I was very newly in post and

stuck my hand out to shake hands with the woman who’d opened the door. She

pulled back and said “it’s my religion, I can’t touch you”. She then spent the rest

of the time apologising and trying to check that I was all right. I was embarrassed,

really, that I’d put her in that position.’ (social worker)

More difficult still was the situation where nursing or other staff felt some disapproval of what

they saw happening with families. Their training had taught them to allow patients to experience

their situation in their own way, yet sometimes this proved very distressing. It was evident that

this was the cause of some soul searching:

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‘One of my early cases was a Somalian lady. I was there when she died – her two

daughters started wrapping her up in swaddling clothes and she was actually still

breathing and they held her nose. I thought if this is a cultural thing, I can’t do

this sort of a job, actually stopping somebody breathing when they’re still alive. I

was quite shocked.’ (community nurse)

A common problem here arose around the relationships of husbands and wives in certain

cultures. A number of different situations were recounted. Participants spoke of a husband

insisting on marital relations with a wife barely out of radiotherapy for gynaecological cancer, of

a husband severely delaying a wife’s treatment for breast cancer because, it was suspected, he

wanted her help in the house, of domestic violence occurring at the time of a wife’s

chemotherapy and of divorces instituted as a result of a wife’s mastectomy. One Pakistani

woman was sent home four days before she died and the nurse was told that the husband would

bring home a new wife. A Bengali father was reluctant for his very ill son to go to hospital, as

he said he had other things to get done, although eventually it was agreed if the boy could be

driven in the consultant’s car.

Nurses and other staff clearly found these situations difficult, as they did not want to show any

sign of disapproval, but clearly felt very uncomfortable. Moreover, some began to question what

was right:

‘What right have we got to impose our values on people? For example, for

cultures where it’s not appropriate that the female makes decisions, what right

have we got to impose that on them? In their country, they would not have a

problem with not knowing a diagnosis. We have to learn to accept that…’

(palliative care nurse)

‘This is playing devil’s advocate a bit, but there are certain principles that the

NHS tries to work on, like giving the patient the right to consent. If you’re going

to accept some of the bits that you want because you want the treatment, then you

should also be prepared to accept some of the other bits, like the fact that

professionals want a chance to speak to the patient openly about their diagnosis.’

(social worker)

Yet another difficulty arising around cultural differences was the need for caution in making

assumptions about what any one individual would want. Participants had found that, whatever

the particular religion or culture, individual families could have their own way of approaching

matters of illness, dying or bereavement:

‘I went on a couple of courses and you had the cultural liaison person saying if

you’re a Muslim, this is what you do, if you’re a Hindi, this is what you do….And

in reality, they bend the rules, just as much as any Catholic would bend the rules.’

(colorectal nurse)

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Participants agreed there was the need to avoid making assumptions, but to constantly ask what

was appropriate. This could give the patient or family the opportunity to indicate the extent to

which they followed particular practices:

‘Ask as you go in [to someone’s house]. Never just take it for granted that

because they are of that religion that that’s what’s going to happen. Feel your

way. You’re being courteous by saying “Am I doing the right thing here? Stop

me if I’m doing it wrong. Let’s do this together”.’ (paediatric nurse)

Attitudes to illness and dying also caused difficulties for nursing and other staff. A number

spoke of working with Africans who were born-again Christians, who refused to consider the

possibility of dying because they believed that God would not let them die (‘Any discussion

about anything else might be a sign that their faith isn’t strong enough’). Although this was

clearly seen as their prerogative, it was difficult to witness as the patients involved tended not to

make appropriate provision for their families. Indeed, sometimes families, if living elsewhere,

might not even know that the patient was ill. There was a related problem arising around

orthodox Jews, who could not be deemed to be dying, because they believed that only God could

determine when they would die. This meant that they or their family might refuse palliative care.

Nurses and other staff expressed a range of emotional responses to these situations, including

anger, frustration and sadness. But what was common was how difficult is was for them to cope

at times. There was a fear of antagonising a patient and losing trust, while at the same time a

concern to be true to their nursing principles:

‘You need a psychological distance, because you act in one way, which is being

outwardly nice and dealing with it, but inwardly you do feel quite uncomfortable

about it. Your thoughts and your actions don’t match at all – and that can become

very uncomfortable if you have to do that for a long time or you have to do it

repeatedly.’ (head and neck cancer nurse)

There was a particular issue of how much they should collude with a belief system that interfered

with a patient being given proper treatment, involving a conflict between being supportive of the

patient’s emotional needs and being responsive to physical ones. One nurse described working

at length with an orthodox Jewish husband who opposed the provision of palliative care, but who

relented in his wife’s last days:

‘It was helpful for me to be involved because he needed me at the end, but at the

beginning he hated seeing me and his kids. He didn’t want to be anywhere near

me, because I was completely the opposite to his beliefs.’ (palliative care nurse)

But the internal dilemma for nurses was considerable:

‘A typical situation is some African or Caribbean woman, told she’s got breast

cancer, decides that she’s not going to have any treatment because she believes in

God. She goes and comes back later with advanced disease, which was

completely preventable if she’d had routine post-operative chemo or radiotherapy.

Obviously, to the patient you’re as pleasant, kind and supportive as can be, but I

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do not ever think “oh, that’s all right” or “it’s just their way”. I just think that’s

nuts . It has no sense. It’s kind of wilfully obtuse.’ (breast care nurse)

‘You don’t want to actually upset them by going against their beliefs, so you try

and understand where they’re coming from, but it can be that you’re in a situation

where you’re working completely against your own principles of how you would

generally nurse, which can be quite difficult.’ (palliative care nurse)

One nurse spoke of being very unsupported by others in her hospital, because she had told an

orthodox Jewish man he was dying and the family were very distressed.

The involvement of ethnic minority staff

Some nursing and other staff thought that looking after patients from ethnic minorities would be

easier for someone from the same background and talked of the need to recruit more widely. But

others argued that this assumption was not necessarily correct. Staff from the same background

might even more easily make cultural assumptions. Moreover, patients from certain ethnic

minority groups often did not wish to be cared for by someone from their community, because of

the fear of gossip within it, in much the same way as they were cautious about interpreters. This

was highlighted by a Chinese nurse who had found herself in exactly this situation; she had

arranged for a Chinese carer for a patient (‘Although I’m from the same culture and speak her

dialect, I got it wrong – from then on, I learned I mustn’t assume’).

Although there was thought to be a growing ethnic diversity amongst staff, it was felt that there

were many gaps; indeed, it was noted that Asian girls were discouraged from becoming nurses

by their families. Black nurses were said to be under-represented in palliative care. Attracting

young people to nursing at all was felt to be a serious problem and many nurses did not wish to

work within cancer care. A few people thought that racism was an issue with respect to job

advancement.

4. Issues of Racial Bias In addition to language and cultural differences, some patients from black and ethnic minority

groups might suffer problems arising from racial discrimination. The focus group participants

were asked to explore the extent to which they might feel an element of conscious or

unconscious bias towards such patients.

Racial attitudes among staff

Most of those taking part in the discussions were certain that there was no element of racial or

other bias in their own work with black and ethnic minority groups (or, conversely, white people,

where the participants were themselves from other groups). Indeed, one participant noted that it

would be impossible to work in her area with such a prejudice:

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‘Where we work, you wouldn’t be able to do the job if you were racist, because

30 per cent of your workload is dealing with people from ethnic minorities. You’d

chew yourself up so much that you would have to leave that environment.’

(colorectal nurse)

A small number admitted, however, that they did feel differently towards some groups in their

day-to-day life:

‘Whilst I try not to think of myself as racist, I know that I’ve been brought up

through a very white middle class family, gone to white middle class schools and

had very very few black friends. I just try and put the patient centrally and remove

that out of them, but if we’re being honest, it’s very hard.’ (lead cancer nurse)

‘There’s a much more conscious element in work to be looking for [prejudice]

within colleagues or within myself, but I am aware of it outside of work. I hope I

don’t act on it, but I know that there are occasions when it’s there.’ (occupational

therapist)

Moreover, a number of participants did feel some element of negativity when faced with new

patients from some ethnic minority groups, based not on racial prejudice but on their experience

that such patients would be difficult to manage. In some cases, this related to the need to work

with the man, rather than the woman (‘I do think “oh, no, not again” – I guess that’s prejudice,

because that tends to come within a race-coded context’). This also arose from language

difficulties, requiring more meetings to sort out misunderstandings, as well as from some

patients’ unrealistic expectations of what the NHS could provide. The latter could range from

major issues, such as good housing, to more minor ones, such as providing double glazing or

central heating. In consequence, they often took much more time and could involve more

complex dealings with various agencies:

‘You are aware that if you have somebody from an ethnic minority, it’s going to

be much more difficult to ensure that they get the proper level of care that you

want them to have, because of the language difficulties and so on.’ (consultant

physician)

‘It’s not racism, but sometimes my heart does sink when they say this guy’s been

in the country from Nigeria for about six months. I think I just cannot go through

another immigration saga. It’s just so time consuming and you sometimes get two

or three people on your caseload at the same time. It’s so challenging trying to

make people understand what you can and can’t do for them. For each of them,

you’re spending a whole day saying “no, I can’t get you a house and bring your

wife and children over”.’ (social worker)

Communication problems were also very tiring. A few admitted, with some sense of distress,

that this could affect their dealings with patients and their willingness to give them time:

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‘I’ve found myself avoiding or limiting the time I spend with people, if I find the

relation quite a difficult one, because of communication problems. I find it quite

a painful experience. Maybe it’s my inadequacies, but we don’t have the backup

to work on those inadequacies. I do feel that when I’m in that frame of mind, my

patient does suffer.’ (breast care nurse)

It was agreed that such reluctance to put in time might be perceived by the patient or family as

racial prejudice, but it was not felt to be due to such a cause.

Moreover, it was agreed that professionals did not always like all their patients, whatever their

racial or ethnic background, and this could cause unequal treatment. This might be an issue of

pre-judgement based on certain characteristics, for instance a black nurse who admitted she had

problems reaching out to upper class white patients, or it might simply be a clash of

personalities. Nevertheless, it was seen as important to be alert to the issue:

‘I think bias is out there all the time and all of us have it. It’s a constant struggle

to try to just be very aware of one’s own biases and how it is influencing how we

communicate with anybody.’ (social worker)

‘There are some patients you simply don’t like. There are some people that you

have to drag yourself to go and see. I think that being aware of that – and trying

to make sure that you don’t disadvantage somebody because of that – is terribly

important. I don’t think it’s applied to race.’ (lung cancer nurse)

A few participants were conscious that some black and ethnic minority patients perceived that

they were not getting the best treatment and would ask whether it was because of their race.

Although this was also asked by white English patients, for instance whether they would get

better treatment in America, it was seen to be a more common question amongst ethnic minority

patients. An occasional patient would claim direct prejudice on the part of a doctor or other

clinician (‘You just try to smooth everything over and go through all the appropriate channels,

but you don’t know, really’). And some participants could see that doctors could be very

dismissive toward patients, more so to those from an ethnic minority background, possibly

without realising it.

One participant admitted that she had an inability to remember some patients from different

backgrounds, arising partly from recognition difficulties. When one Asian patient returned, she

was embarrassed to find that she could not remember her or the family (‘That was awful, but I do

find it hard to recognise differences in people’s faces; they’re much more covered and you don’t

get differences in their hair’).

Racial attitudes among patients

The reverse issue – of racism among patients towards staff or other patients – was widely

acknowledged to be a problem. This was usually prejudice among white patients against black

and ethnic minority groups, but it was sometimes more complex. West Indian patients might not

want an African nurse, for instance, or even one from another part of the Caribbean. One nurse

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commented that some of these conflicts were not surprising, given the number of people at war

with one another in their own countries.

Sometimes, this was simply a question of the occasional offhand remark (‘Some people have no

inhibitions about what they say to you’). Handling this situation could be a problem, because of

the need to maintain a relationship with them:

‘You go to the bedside to talk to a family about whatever’s concerning them and

sometimes they want to complain about how they’ve had to sit opposite this

“Paki”, or whatever. I actually find that very hard, because you want to be that

family’s advocate and yet absolutely you’re not going to go along with that.’

(palliative care nurse)

Some tried to ignore such remarks or say that they do not want to pursue the conversation.

But there were also examples of patients not wanting to be treated by black nurses or other

workers. This tended to be dealt with more directly; one black nurse described an incident of

this kind:

‘I went in and I said “I’m really sorry, but there’s only us here. You can transfer

to another ward, but I don’t think you’ll find any ward that hasn’t got a black

nurse on and we need to look after you. You can discharge yourself, that’s quite

within your rights and I’ll get the doctor down.” He stayed.’ (breast care nurse)

She tried to speak to such patients as little as possible, both not to aggravate the situation and

because she did not want to display her true feelings (‘because I have a job to do’). She noted

that she had experienced very few incidents of this kind in many years of nursing.

White staff also found such situations difficult; indeed, they often had to parry such requests, as

patients felt more able to be open with them. One white participant, both of whose parents were

immigrants from Europe, said that she felt particularly offended by anti-immigrant remarks, yet

did not have the support that would be available to staff from black and ethnic minority groups.

A number of participants thought that sexism was a much more common issue than racism,

particularly among men from certain ethnic backgrounds. They were conscious of being

stereotyped by families (‘When you go into a house, you feel they look at you and think “oh,

you’re a bit young, you’re female and you’re white”’). In one case, inappropriate sexual

advances were noted; the issue was discussed very firmly with the patient, who was told he

would have to go elsewhere if these continued. Patients, particularly from certain ethnic

backgrounds, did ask for nurses of the same gender.

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5. Recommendations

This research was initiated in part because of an interest in education, training and support needs,

so considerable attention was given to this issue during the discussions. Other recommendations

raised are also explored here.

Training

Only a minority of the participants had experienced any training in working with black and

ethnic minority groups and those who had done so had mixed views about whether it had been

helpful. There was relatively little enthusiasm for courses which tried to detail the practices of

particular groups. Such information, for instance about handling a body after death, was not only

dry (‘It quickly gets very boring – you stop concentrating after the first two’) but also difficult to

memorise (‘You come away knowing that one religion has five K’s, but you’ve no idea which

one’).

Not only was it impossible to learn all the details of the many different cultures with which they

might come into contact, but more importantly, this could not help with their interactions with

any one individual. Training should help staff to take into account the extent to which people

could differ in their views from their wider group:

‘What we need to remember is every family is different. It doesn’t matter about

their colour, their religion, anything else. If you treat your family as an individual

family and respect their wishes, you can’t go wrong – that is the message that you

need. You don’t need to have vast cultural training to do that.’ (palliative care

nurse)

It was noted that people coming from second or third generation families often picked up

different attitudes, while retaining some of the practices of the initial culture. Participants

wanted to learn the skills to help them to cope with the diversity they saw in practice:

‘The skill is to learn to listen to what the person and their family say to you.

Because two Muslim families in the same week might want to do something

completely different to each other. People are infinitely variable.…Often, it’s

more giving people permission to do what they feel is right, which isn’t always

what their ethnic group feels is right.’ (palliative care nurse)

‘What you don’t want for a family from any culture is to add to the distress that

they already have by doing something inadvertently that they would see as really

quite nasty. When you’re actually with the patient, how does that bear to what

you’re doing?’ (palliative care nurse)

There was general enthusiasm for the provision of more training, if geared to helping them to

think about their own feelings, attitudes and assumptions. One participant said that the most

useful training she had undertaken was advanced counselling, as this had taught her to listen to

what people were trying to say, and several spoke of the need for more communication training.

Others expressed the need for such help:

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‘There are quite a lot of seminars and study days about the very concrete things

around disposal of bodies etc, whereas there’s nothing much to help you about the

consent issues, the communication issues, the surviving and living with it…’

(breast care nurse)

‘Having a base line knowledge is very important. To be courteous and to be

dignified and know that those are the things that we feel that we want to do for

people.’ (paediatric nurse)

Some additional matters that might be explored included legal issues for patients who had an

uncertain or illegal status in Britain, issues around benefits, advocacy and the support available

within their communities. Another need was training in how to help people from ethnic minority

groups to be more forceful in their dealings with doctors.

Regarding the timing of training, this should be provided during basic training, but it should also

be reinforced by short sessions subsequently, for regular reflection:

‘It’s about continuing to update oneself – to go back and review in both a very

formalised way as well as an informal one. Where am I in this process? What

have I learnt? Where do I still feel very uncomfortable or lack confidence? Where

am I going now? I think it’s a constant thing.’ (social worker)

‘It just makes you more aware and it highlights your own practice. It makes you

think about things more…and adjust your care accordingly.’ (head and neck

cancer nurse)

It was suggested that the NHS tended to plan very formal and long-term training courses,

whereas one or two day courses could be much more flexible and stimulating. These should

involve teaching by members of different ethnic minority communities, preferably including

actual patients with cancer (‘They really know the issues’). If such courses were provided to

practising nursing and other staff, it would feel more real. In one group, it was argued that an

induction course for new nurses should include more attention to black and ethnic minority

issues, including opportunities to get to know key local people (‘The people you have to fight for

– not somebody that’s got loads of letters after their name’).

Particular attention was given to the potential usefulness of training videos. This idea was

generally welcomed as a start, especially as a mechanism for enabling people from ethnic

minority groups to convey particular situations. Few thought that videos on their own would be

sufficient. A number of participants thought that videos should be seen primarily as a stimulus

to group discussion, preferably with a facilitator (‘You can see the difference of people’s

opinions about the same thing’). Some suggested it would need to be supplemented with written

material. Videos should not be simply handed to staff to watch on their own. It was also

stressed that the videos should be made by people with a genuine understanding of the issues;

one nurse from an ethnic minority was distinctly unimpressed with a video ostensibly about her

population.

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One group had used a video on multi-cultural care in their area, with people from different

religious groups describing their needs with respect to illness, dying and bereavement.

A few participants were doubtful that they would learn much from any form of training. They

tended to argue that experience was the best guide:

‘My ongoing education is from the patients I’m working with. You pick it up

more from that. So, it’s basic training at the beginning, so you know the range of

possibilities to be aware of, but then it’s mentally happening in your own mind,

that there’s always infinitely more to learn.’ (paediatric nurse)

Some participants felt they would benefit from training in working with interpreters. One

participant had done a half day training course on this and had found it very useful. Issues that

were raised tended to be highly practical, such as how to make it easier for the interpreter to

translate, where to put eye contact and how to arrange the room.

It was also noted that interpreters themselves might benefit from some very basic nursing or

medical training. Equally, they needed an ability to gauge the level at which information should

be pitched for a patient (‘That’s where nuances get lost, the emphasis gets lost’). It was

suggested that interpreters needed to understand their own cultural beliefs and assumptions, for

instance what was understood by the term ‘treatment’ and its relationship to ‘cure’ (‘There’s

more to interpreting than just repeating the words in a different language’). Interpreters could

also benefit from support, where they were undertaking difficult tasks, such as breaking bad

news. On a different point, one person suggested that baseline criteria for interpreters should be

developed, including the ability to write in their own language as well as speak it, and

competency in English.

In one group, it was suggested that health care professionals should be trained in conversation in

a few other languages; one nurse was actually studying Urdu at night class.

One group suggested that material on working with black and ethnic minority groups might be

added to written material already provided by Macmillan Cancer Relief. There was praise for a

folder of material provided, referred to as a ‘newcomers pack’, seen as comprehensive and easy

to use. But this did not include any information on this subject. It was proposed that this might

include local contact points for assistance in this area. Several noted that Macmillan Cancer

Relief had produced a black and ethnic minority directory. There was also praise for booklets

prepared for patients from some ethnic minority groups and a suggestion that these might be

expanded to more languages.

Support

Despite the many difficulties noted, most participants did feel that they had adequate support

mechanisms. They spoke of regular clinical supervision, as well as opportunities to share

problems within their team:

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‘I get what I need. It’s coming back into the office, having had a horrendous time

with somebody, and being able to then say “that was just awful”. That immediate

support I can get either from immediate colleagues or seek it out if I feel I need

to.’ (occupational therapist)

‘The unit has a ward meeting about every three weeks for communicating

information. And there’s often spontaneous group discussions in the office, if

there’s anything particularly difficult going on’ (palliative care nurse)

This was more of a problem for those who worked in a small hospital on their own; a few

participants in this situation felt they could benefit from more support. In one area, some had set

up their own support forum for exactly this purpose.

Changing Local Practice

There were surprisingly few recommendations for changing practice, aside from additional

training. So much of what participants did had to be attuned to the particular individual that they

could not easily see how changes of policy could be a help. Some spoke of the need for all

health professionals to be ‘working to the same framework’; a particular issue here was different

modes of working between doctors and nurses (‘There will be a discussion with the doctor and

then the nurse will come along and isn’t aware of what’s been said’).

In one area, where there were too few qualified interpreters, it was argued that they should be

pro-active in pressing for more (‘If we shouted enough about interpreters, we would get them’).

Additional issues for Macmillan Cancer Relief

Some concern was expressed that Macmillan Cancer Relief’s own image was not one of cultural

diversity. In several groups, it was suggested that it was a ‘very white middle class

organisation’:

‘At the end of the day, they’re very twee and middle class, sitting in their shiny

offices. That is just what comes over. They’re affluent, they’ve got loads of

money and they’re condescending.’ (palliative care nurse)

It was suggested that more effort should be made to find postholders from a range of

backgrounds:

‘I’ve had dealings with Macmillan for many years and I would ask how many

ethnic minority nurses have they appointed? I think you can count them on your

own hands….Macmillan are talking about doing this ethnic minority thing, but

you need to look at yourselves first.’ (palliative care nurse)

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Although it was accepted that there was a general paucity of nurses from certain backgrounds, and

that ethnic minorities were well represented in some areas, this was seen as an issue which

Macmillan Cancer Relief should confront.

In one group, it was suggested that Macmillan Cancer Relief should employ a new form of

specialist staff in the form of specialist interpreters or trainers from different ethnic minority

backgrounds. These would help other postholders to overcome some of the barriers discussed and

familiarise them with certain key issues. They might work a telephone helpline, so that

postholders could phone them with a query. One participant noted that Macmillan had just

introduced an ethnic outreach liaison worker in their area, who could help in this way.

Another recommendation to Macmillan Cancer Relief was that it should be more pro-active in

pressing for changes in health care provision to address the issue of accessibility for people from

black and ethnic minority groups. This might be through various other organisations, such as the

Royal College of Nursing, or at local level through contacts with cancer networks. There was

also seen to be a need for such work at more grassroots level. It was noted that CancerLink did a

lot of good work in this area and hoped that this would continue, despite its merger with

Macmillan Cancer Relief. It was also argued that Macmillan Cancer Relief needed to be more

open to new ways of presenting information for people from black and ethnic minority groups.

Their established ‘house style’ was not always compatible with accessibility to certain

populations.

On the positive side, a number of participants commented on the helpfulness of material provided

by Macmillan Cancer Relief as well as the support provided to them, especially at the outset.

There was also support for the current project:

‘I’m very glad to see that it’s on Macmillan’s agenda in terms of research. I think

there should be more of it – not research for research’s sake, but targeted research

projects that come up with ideas and strategies for dealing with it.’ (social worker)

‘It’s good that it’s actually asking us on the shop floor. It’s trying to connect with

these people rather than it being assumed.’ (paediatric nurse)

6. Concluding Reflections

This report has noted a series of issues affecting staff working with patients from black and ethnic

minority groups. The fact that it has this perspective is in no way meant to disparage the very real

difficulties experienced by patients themselves. They, too, may feel great frustration over an

inability to communicate because of a lack of English, an irritation that staff do not understand

their culture or explicit or implicit racism from staff or other patients. But this report is not about

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their difficulties – it is expressly addressed to the problems of nursing and other staff working

with them.

What seems striking from this research are the very real difficulties arising for staff in the course

of caring for patients from black and ethnic minority groups. The terms ‘uncomfortable’ and

‘difficult’ arise regularly in their comments, but others are also suggestive of emotion and

reflection: ‘challenging’, ‘painful’ and ‘inadequacy’ to name a few. Working with patients from

black and ethnic minority groups is not simply a technical problem of finding means of

communicating when language is an issue. Where cultural dilemmas emerge, there can be a

genuine challenge to a professional’s sense of appropriate professional practices. This suggests

that both training and support may need to be considered in some depth.