This Black History month, Macmillan Cancer Support is proud to celebrate its collaboration with members of the black community at Well-Versed Ink to launch the ‘Raising Your Voice’ guide to cancer patients’ rights and the treatment people should and are entitled to expect when diagnosed with cancer.
Well-Versed Ink is a poetry and storytelling group for people from the black community affected by cancer funded by Macmillan Cancer Support. Through poetry, storytelling and sharing experiences in the group, it became clear that many people felt they had been treated unfairly or would have had a better experience and greater confidence going into their treatment had they been more aware of their rights as cancer patients. And so, the ‘Raising Your Voice’ guide was born.
Claudette aka Dimple, from Romford joined the project to help find her voice through poetry and storytelling and is delighted that it led to the production of this guide to help others.
Dimple was diagnosed with colorectal cancer just after Christmas of 2015 and says:
“I went to the doctor several times before they discovered my cancer. It was slow growing, which is a good thing I suppose. I had low iron and had lost weight unexpectedly, but I had a clear blood test. The lump I had was still unexplained. It was a good job I was so persistent.
“The term the doctor used was ‘primary cancer unknown’ in other words the cancer had spread, and they didn’t know where it had started.
“The doctor that told me didn’t even ask if I had someone with me or how I would be getting home. I was just on his list for that day, and he delivered his news and carried on with it. I left the hospital in a daze; I don’t know how I functioned for the next few days.
“After weeks of tests, questions, sleepless nights, endless tears and nightmares, they found out where the cancer had spread from. I was told that I would have 6 weeks of chemotherapy with daily radiotherapy. I sat in a room signing page after page of documents that basically said that I was at risk of all of the horrible things you don’t want to think about and if that happened the hospital wasn’t liable. With the support of my Mum and my best friend I signed every page, I wanted to live, I would do anything to have some more time on this earth with my children and the people I love.
Dimple also experienced mistakes during her treatment that led to further distress and says:
“Before starting radiotherapy I had markers tattooed on my body so that they could line up the machine for treatment. One day, a student was doing my treatment and she didn’t line up the machine property and ended up treating me in the wrong area for 15 minutes (my bones). I appreciate that students have to learn, and I don’t mind them watching my treatment, but she should not have been in charge. It was all very distressing, I ended up having to make a complaint, but it was all very confusing. This guide would have been really helpful to take me through the process.
“It has taken me over 5 years to come to terms with my cancer diagnosis and what I went through, and, in some ways, I think I will always be dealing with it. As much as I have learned to live with how cancer has touched my life, it will never be the same again.”
Dimple and many members of her family have been affected by cancer over the years but have not always felt comfortable seeking support as they were unaware of their rights and the treatment they were entitled to. Many of these themes came out during the Well-Versed Ink programme where people felt that they face inequalities in health care purely because of the colour of their skin.
Dimple adds:
“I do not recognise myself on the leaflets and posters offering support to cancer patients and often feel as though the services are not for me. There is also fear about going to the doctors and a lack of trust which is generational. That’s why working with Well-Versed Ink was different as it allowed us to openly speak about the inconsistencies that the black community faces in health care and it helped that we had the support of others who felt the same.
“I am really proud to have been involved with this project – it has increased my confidence and helped me to come to terms with what I went through. I only wish that something like this had been available to me when I was first diagnosed. I feel that I have left my mark and contributed something positive out of my battle with cancer and know it will help others to navigate next steps, find information, and support at a very difficult and confusing time in their lives.
Dimple now hosts her own live talk show on Instagram – @officially_flexitarians
“I am now in remission and feel like one of the lucky ones. In the last 18 months, I have been co-hosting a live Instagram show with a difference @officially_flexitarians. We talk about everything from vegan food, travel, events, music, providing ‘edutainment’, supporting and highlighting black businesses and creatives, and discussing topics that are beneficial to our community.”
Lee Townsend, Macmillan Engagement Lead in London says:
“We are so grateful to Dimple and the other participants on the Well-Versed Ink project for getting involved in this initiative. At Macmillan we recognise that inequalities in cancer care exist within many minority and ethnic groups in the capital and evidence shows that they are more likely to have had a negative experience. We are listening to these concerns and doing our best to tackle some of these issues. We feel that the ‘Raising Your Voice’ guide is a good start although we are committed to doing more. This has been a true collaboration with the Well-Versed Ink group taking the lead and telling us the kind of support they would like to see and what would have made difference to their cancer journey. We are very proud of the result and hope the guide will make a difference to everyone at the start of cancer journey giving them confidence to ask the right questions, be aware of their rights and the treatment they should expect from the point of diagnosis.”
The guide was originally designed to ensure BAME communities and other groups are able to create a change in their treatment or care without facing discrimination or inequality and it is available for everyone to use.
