When a woman is first diagnosed with breast cancer many things happen very quickly. Doctors and nurses can answer most questions. However, they cannot truly convey or understand what lies ahead for the newly diagnosed woman or other breast cancer survivors. A diagnosis of cancer during pregnancy is a dreadful diagnosis that many women face every year. I was diagnosed with breast cancer at the age of 35 and being a young black woman with breast cancer I did not fit the prototype of the breast cancer patient – white, middle-class, 60-year old female. As I made my journey from diagnosis to survivorship I found myself alone, confused and misinformed.
At the beginning of the journey the transition from my GP to the clinic to confirm my diagnosis was uncoordinated and very distressing made worse by the lack of information and support. Once I was diagnosed information around the type of breast cancer I had developed was not available leaving me uniformed and unable to make the right choices and decisions for me. At the time of my second diagnosis I was pregnant and bereaved with no additional support offered.
As I continued the journey from diagnosis to survivorship I discovered many more barriers that impacted me engaging effectively with the health care system, such as childcare, transportation and financial issues which were compounded by not having an extended family. During my time of need there was no one to turn to and no organisation or charity that could address my needs appropriately or with the culturally sensitivity I yearned for. After undertaking research I discovered that historically, breast cancer services were not developed and designed for younger black women. This left me very concerned that black women were not being offered the same quality of service as white women in fact they were being overlooked or grouped together with other BME groups who have different needs. I therefore wanted to develop an Afrocentric approach to breast cancer as opposed to a Eurocentric approach. I wanted to establish a centre where black women could meet and find support from their own community, that provided up-to- date, relevant information and that cared for all of a women’s needs not just the cancer itself and this is why I started Betterdays Cancer Care.
I wanted Better days Cancer Care to educate, inform and empower black women affected by breast cancer and to provide a mechanism to reclaim ownership of the black female breast, constructing and creating our own breast cancer identity led by black patients, carers and families. Today at Betterdays Cancer Care we endeavour to:
• Inform, educate and support women through our breast health promotion outreach work, website and publications designed specifically for them.
• Influence improvements in policy and practice by ensuring the views and experiences of women are heard at the highest level.
• Provide support materials for professionals responsible for their welfare and education.
• Develop innovative, collaborative projects which pilot new ways of working, disseminate best practice and encourage more joined up working across the healthcare system.
A practical example of the innovative ways that we are looking at revolutionising the way that health care is delivered is through our Patient Navigation Project. Launched in March of this year, Patient Navigation is a new person-centric approach devised by the US surgeon Harold P Freeman and introduced to the UK by Betterdays Cancer Care. As a result of the inequalities and barriers I encountered throughout my journey I began to research other models of care and Patient Navigation was consistent with the ethos of Betterdays Cancer Care in that it aims to be culturally sensitive and holistic by treating the person and not just the disease; it views the patient as an individual and not a health care statistic. Patient Navigation ensures that patients are never alone or feel abandoned by pairing women with a Patient Navigator who can guide them through the health care system. Any barriers are picked up and addressed in partnership with other agencies allowing a joint-up approach that is holistic that always had the patient at the heart of it all. Patient navigation not only saves lives but it provides a safety net for patients so that they come through their ordeal in a better frame of mind.
Betterdays Cancer Care will continue to work towards addressing the inequalities that exist in breast cancer care to give our women the best chance at survival.
I was dealing with Birth, death, breast cancer. Throughout my journey I have experienced and endured insurmountable odds near misses, and a catalogue of mistakes. It was a devastating, frightening, and isolating time compounded by conflicting information, inequalities and the fact that I didn’t meet anyone in a similar situation. I had no choice, something I didn’t want another woman to experience. I survived the demoralising ordeal and continue to campaign for better treatment across the globe. Having experienced cancer twice undergoing the treatments and side effects I know only too well the heartache that a diagnosis of cancer brings, physically, psychologically, emotionally, socially and spiritually.
Betterdays provides services so no woman need be alone. You will discover that the healing is a process. Sharing with someone who has “walked the miles” in similar shoes offers an opportunity to learn, take comfort and, perhaps, make a new friend. No matter how far these women are from their initial diagnosis and treatment, helping them helps you.