Deep rooted health inequalities have existed in the NHS since its inception, mostly relating to deprivation. However, in the last two decades England and Wales have become more ethnically diverse and this has further widened the gap. I started taking more active interest in health inequalities in 2005 as I was recovering after a major neck operation. My own experiences have highlighted to me that while ethnic minority population is increasing, health inequalities are increasing as well whether it is participation in preventive care, accessing diagnostic services or treatment! It is most obvious in my own specialty of breast care.
While breast cancer incidence rates have been increasing in Asian women year by year in the UK mirroring the increase in incidence rates in the Indian subcontinent, poor breast cancer awareness and screening uptake rates have persisted in Asian women and they were labelled hard to reach communities! As breast cancer manifests itself more aggressively and earlier (peaking at age 45) in Asian women than in Caucasian women, they need more breast cancer awareness rather than less!
I undertook a number of small research projects which confirmed my suspicion that there are deep rooted inequalities in care of Asian women at various steps of their journey right from poor breast cancer awareness, poor breast screening uptake rates, delayed diagnosis and late presentation, poor uptake of breast reconstruction after mastectomy and overall poor breast cancer survival rates.
Launch of the Asian Breast Cancer Support:
With support of the North West SHA, my Trust and Genesis Prevention Appeal Charity, in October 2010 I organised a National Conference to identify various barriers to improving breast care of Asian women. Whilst language is an important barrier especially in first generation screening age (50-70yrs) women, cultural and social issues are equally important.
It became clear that these are deeply entrenched issues and required a multi-pronged approach to make any progress and further required active partnership between health professionals and Asian breast cancer patients, their carers and interested lay public members. This led to the launch of dedicated Asian Breast Cancer Support Group at the Nightingale Centre and Genesis Prevention Centre, University Hospital of South Manchester NHS Foundation Trust in October 2011.
We set out with very ambitious as well as challenging objectives for the Group including:
- Support: Asian breast cancer patients have unique cultural and linguistic needs. The Group provides a valuable forum for patient and carer group members to interact and share their experiences with each other. In due course of time they can provide support to newly diagnosed patients as well as survivors of breast cancer.
Partnership working between health professionals and patients/carers on the objectives below:
- Information: to consider what information is available at various steps of patient journey; whether it needs updating; translation into common Asian languages depending on the patients we serve; help develop written, audio and video materials.
- Communication: to support health professionals in communicating effectively with this group of patients eg is it meeting their needs, how we can improve it, role of interpreters and health professionals, giving patients more effective choice.
- Promote Breast Awareness: Help develop effective programme to raise breast awareness in Asian women.
- Promote Research and participation in clinical trials: Give their input to various research projects and represent interest of Asian patients, help increase participation of these patients in various research trials.
Cultural Humility Model of Cross Cultural Communication Skills Training:
It became clear to us that simply motivating patients and providing translated materials would not be enough. We will have seek change in the attitude of health care professionals and improve their cross cultural communication skills. In 2011 we started with focus groups with patients, carers and lay people on one hand and multidisciplinary health care professionals on the other hand. There was a lot of enthusiasm amongst both groups to help each other and this helped us in developing and implementing a unique Cross Cultural Communication Skills Training Programme. Patient, carer and lay group members actively help in video recorded role plays to improve cross cultural communication skills of health care professionals.
Progress so far:
Over last 7 years Group’s membership base has expanded widely and it has made considerable progress towards its objectives though there is still a lot to be done. We have helped bridge the gap between patients, carer and lay people on one hand and health care professionals on the other hand. Besides two Group meetings each year, there are several smaller focus group meetings each year debating various topical issues eg the ‘Be clear on breast cancer campaign’ in Feb 2014. Attendees come from all over England and share their experiences, new initiatives and ideas. The Group has established a large inventory of multilingual leaflets and other information for patients and carer. These are distributed more widely with help of group members and local charities. The Group members also help in various research projects and their findings are then shared with group members.
Karbani et al paper published in Asian Pacific Journal of Cancer Prevention in 2011 concluded that ‘cultural beliefs and practices accentuate difficulties in understanding breast cancer, breast screening and breast self-examination, and can prevent South Asian women from adopting preventive health practices’. Breast cancer is a major stigma in the Asian community preventing some Asian women to seek early diagnosis, treatment and follow up care.
Our Group is helping them to breach this taboo subject, speak out openly about their experiences and help improve services for other patients. In Group meetings patients, carers and interested lay people are joined by healthcare professionals and academics. Without any hierarchy, they network and share information, hear each other views, raise breast cancer awareness, help improve cultural and linguistic understanding and dampen the stigma of breast cancer in the Asian communities. The Group also help to attract patients to participate in research trials. The Group uses every possible opportunity of raising breast cancer awareness via local broadcasting channels and social media.
Two group members spoke of their experiences and the support they received from the group to Guardian in October 2013:
‘During the nine long years between her breast cancer diagnosis and the launch of an Asian breast cancer support group, 65-year-old survivor had found no adequate emotional support specifically targeted at women from her community. Likewise, 43-year-old law graduate, a mother of three, who received a diagnosis in 2011, had neither met nor been introduced to any other Asian breast cancer sufferer until the group was formed two years ago this month. Both women sensed a cultural veil of secrecy drawn over them and their illness’.
‘Both discovered tumours by self-checking. They underwent mastectomies plus chemotherapy and radiotherapies for non-genetic cancer. Admittedly, the support group arrived late in the day for one’s emotional needs, but it has given her confidence to be outspoken about her past illness.
“It has provided the opportunity for me, as a senior, to be a facilitator and offer new patients my insights into cancer – and my empathy. I’m a living example of survival. If I can make one iota of difference to just one woman’s life, I shall be grateful,” she says.’
Overall it has been an immensely satisfying experience for me. It has helped raise a lot of breast cancer awareness, improve cross cultural communication skills of health professionals and is gradually helping addressing health inequalities in breast care. It has helped me discover my own untapped strengths as well as weaknesses. It has enabled me to give back something to my own community as well as to my professional fraternity. I could not have made so much progress in such a short time without support of my Trust, in house charity Genesis Breast Cancer Prevention Appeal, regional NHS stakeholders, so many colleagues across ethnic divide who have given their time as well as helped secured funding ensuring long term continuation of our work. Finally, my deep gratitude goes to so many patients, carers and interested lay people who have shown their faith in me and supported the Group with their utmost dedication. This has helped them in some ways but more importantly have laid foundation to support our future patients and carers.
Anil Jain is a Consultant Radiologist & Founding Chair of the Asian Breast Cancer Support Group, at the Nightingale Centre and Genesis Prevention Centre, University Hospital of South Manchester NHS Foundation Trust.