Carrol May Nelson
Original: May 2012
Updated: December 2013
This pilot research project was funded by the National Cancer Action Team and it was undertaken in the Borough of Trafford to find out the impact of cancer amongst the Asian and African-Caribbean communities. The study took place during the year 2011 with some follow-up work during 2012.
Throughout this study common themes were identified. Results were consistent whether they participants contributed through one to one interview and questionnaire, focus group or through workshop discussion. Some of the major findings are:
There is a distinct lack of cancer awareness in the black and minority ethnic community in Trafford. Participants confirmed that they would have benefited from cancer awareness sessions. They displayed a clearer understanding of services and the importance of routine screening leading to their diagnosis. Lack of awareness made patients frightened. “I thought I was going to die. I did not even know that you could get cancer of parts of the body. I thought you had it everywhere. I was preparing to say good bye to my family and wondering how they would cope. The ‘big c’ destroyed me. Then I had surgery and the cancer of my throat is now gone. I did not know that you could get better.”
Quoted from a 58 year old male from Pakistan
Support Service & Pathway Awareness
There is a lack of knowledge about procedures and pathways. Half of interviewed participants were not aware of their right to a second opinion. Just under a third of participants attended a
GP appointment three or more times before a referral was made for further investigation. Also,m that there was a lack of awareness of cancer support services. Popular belief amongst
participants was that during their cancer journey they have been misinformed in relation to treatment, and contradictions made by cancer staff in relation to diagnosis and information.
They felt strongly about the lack of support available or offered for family and children of patients. Often services are not culturally appropriate and some staff are not culturally aware.
“My husband had difficulty coming to terms with my diagnosis at the time. My best friend helped me to communicate with him and I found out he was frightened and thought I was going to die. Support for partners and family members is crucial to enable them to explore their fears. They are often more frightened than the person who has been diagnosed. This should be looked into. Cancer support provided must include the whole family of the diagnosed person”
Quoted from a 56 year old African-Caribbean female
GP and Health Professional Interaction
When interacting with health professionals, most of the issues and negative experiences arise during contact with GPs. A recurring theme throughout the study was people feeling
they are not being listened to when approaching them with differences in their body.
When treated in hospital, African-Caribbean female participants had positive experiences during treatment. Asian female participants felt underrepresented and spoke of cultural
differences between themselves and health professionals, who made them feel uneasy.
Relationship between many people and their GPs are difficult leading to frustration and poor relationships which are lacking in trust which in turn is having the effect of some patients not attending appointments because of a fear of rejection or being dismissed out of hand. Once in hospital or clinics though the tension is reduced and experience with health professionals is better.
Many of the respondents rely on and rarely leave the local community and showed some misgivings about travelling to hospitals or clinics out of the area. News can and does travel through the community and the effect of someone’s poor experience is likely to affect others when making the decision to attend appointments or screenings with consultants. Many people are scared and unsure of authority of professionals and may neglect to attend very important appointments which could effectively go towards preventing illness.
Cultural & Language Barriers
There is a cultural barrier that affects the likelihood of a good experience within healthcare settings. A lack of Black female doctors and a feeling of being in a minority on a ward has a dramatic effect on the experience of treatment and affects the likelihood of receiving treatment or presenting to a hospital. It is felt that many professionals do not understand or are not aware of someone cultural or religious needs. The issue of dress and gender was reoccurring and contributed to a negative view of how patients are seen and treated. Language was also a subject raised by respondents. For many, English is not their first language. If they were unable to read the letter then they rely on someone to do it for them and to explain it to them. Literature available from GP surgeries and community centres is not considered to be aimed at BME communities. There are real issues with communication. If someone believes they will not be able to communicate easily with health professionals, it creates further barriers to good quality care and encourages non-engagement.
Support Service Awareness
There is a distinct lack in awareness of support service for BME carers. This was most evident during workshops where Macmillan Trafford was introduced to the participants. For many it was the first time that they had come into contact with the support service and for others the first time that they had become aware of the organisation.
Role as a “Carer”
Some did not see themselves as carers. The fulfilment of a duty to care for someone overrode being classified as a carer. This had an effect on someone who was likely to look for support and help. Participants who cared for spouses or parents were less likely to label themselves as carers and therefore did not feel seek further support.
Involved in Care
A third of participants noted that they felt they were not included when it came to the discussion of care for someone with cancer. Their interaction with GPs when attending appointments with those whom they care for was often poor, with half claiming they had little confidence when it came to primary care.
There is a general feeling that information about cancer was not easy to come by and therefore not as accessible as it should be despite the amount of literature that is in their GP surgeries or health centres. Much of this information is seen as not relevant to them so they do not gather it. Carers currently access the most of their information from community groups. They also access local libraries, the television or a family member or friend.
BME representatives in services
There was a consensus that there is a lack of BME workers within health and support services; and having access to a BME worker can have a positive effect in understanding of needs, similarities in belief systems and reassurance of not being discriminated against. Carers felt more reassured and confident in talking to staff of the same cultural heritage.
“My mother was treated in an undignified manner whilst in hospital before she died…we were scared to leave her without a relative and used to take turns…it was a very stressful time but we did not receive any support or guidance. My mother was often left in an undignified manner with caused distress to the family…I remember getting some grace when one evening an African Caribbean Nurse came to me and said ‘it’s ok you can go home and get some rest…I’ll be looking after your mother this evening’…I felt so relieved as I knew that because she was Caribbean she would understand my mum’s needs…that was the first night that I slept soundly in weeks…”
Story of a young carer
The following recommendations have emerged:
1. Cancer Awareness and Education
More education of cancer, its effects and support services available.
Much more marketing that emphasises the survival of the disease.
2. GP Interaction & Accountability
More equality in the service delivered by GPs and their accountability.
More BME professionals.
3. Services Awareness and Support
Targeted awareness-raising of cancer services and support available to BME users.
Local engagement with community and faith groups to improve service.
4. Cultural Awareness
Better use of community groups to deliver service and/or awareness.
Community champions specifically trained and be recognised and trusted in their community.
5. Information Delivery
Information in different languages placed in community places and GP surgeries.
Use of the local media such as community radio station, audio and visuals.
NHS providers to engage more with their local BME communities regards service changes
To download the complete report please click HERE