Lesley Archer, one of our Patient Representatives, tells us about how she got involved with the Secondary Breast Cancer Pledge.
The Secondary Breast Cancer Pledge is a collaborative programme developed by Breakthrough Breast Cancer and Breast Cancer Care that aims to assess the needs of people living with secondary breast cancer. Based on patient feedback we help hospitals to improve their services and importantly, the experience of patients. Lesley volunteered to be the Patient Representative for Ipswich Hospital when they undertook the Secondary Breast Cancer Pledge in 2014. Here Lesley tells her story and how she found helping make changes to hospital services.
My breast cancer journey began in 2007, at the age of 48, when I found a lump in my left breast. After a biopsy and mammogram it was confirmed that I had a malignant ductal cancer. My diagnosis was a big shock as I had not felt ill in any way. Throughout my treatment, I remained very positive and optimistic and everything went well - my mammograms for the next four years showed no sign of the disease.
Imagine my horror when on the fifth year my mammogram picked up another malignant ductal cancer, this time on the right side. I was devastated. It felt like I had won a race only to be disqualified when I went to get the medal.
Over the next 12 months I never felt happy. I began to see my breasts as “the enemy” and I knew that a double mastectomy was the only way forward for me. I don’t think anything can prepare you for the physical and emotional enormity of a mastectomy but I felt that it was the right choice, especially as a separate lobular cancer was later found during histology (when the breast tissue they removed through surgery was examined in microscopic detail).
I remember thinking that I had finally beaten the cancer, but how wrong could I be? Just three months later following an MRI for severe back and hip pain, my GP gave me the devastating news that I had secondary breast cancer in the form of extensive bone metastases. That is when the bottom really fell out of my world. All I could think about was that I was going to die. It was only the compassion and expertise of my oncologist and the cancer team at Ipswich Hospital that made me realise that although the cancer was incurable, it could be treated and I wasn’t going anywhere just yet!
Patients helping other patients
During my treatment I was sent a questionnaire by the hospital about my secondary breast cancer experience. They wanted to know how they could improve the quality of care for secondary breast cancer patients. I later found out that this initiative was driven by Breakthrough Breast Cancer and Breast Cancer Care to help create a Secondary Breast Cancer Pledge from the hospitals to all patients with the disease.
After I sent the questionnaire back, I had a phone conversation with the charities and agreed that I would like to become a Patient Representative for the Secondary Breast Cancer Service Pledge. This role would allow me to help turn mine and other patients feedback into real changes to the care the NHS provides for people with secondary breast cancer. It had not initially occurred to me to get more involved, but completing the questionnaire and talking to the lovely people at both charities made me realise that they, and the hospital, were really passionate about making improvements to patient care. I felt that maybe I could help them see things more clearly from a patient’s perspective.
I was invited to attend a training session at the hospital with representatives from both charities. The training was detailed and interesting and everyone was very welcoming and supportive which made me even more determined to help. As a Patient Representative I helped go through the answers that other patients had given on the questionnaire and drew out things that I felt could be improved. I also used my experience as a patient to suggest possible solutions.
I pulled all my ideas and feedback together and was asked to present my thoughts to hospital staff. I was pretty nervous, but all the people involved were so welcoming and genuinely interested in what I had to say. On my part it was fantastic to see just how serious and passionate they all were about improving care and it made everything seem really worthwhile.
The best thing is that I have already seen changes at the hospital as a result of my help. There have been improvements to the waiting room system at the hospital and I am aware that a booklet is being put together providing lots of information and support exclusively for secondary breast cancer patients. Hopefully all my ideas will come to fruition during the next year and I know that the hospital are very committed to making this happen. The hospital staff are as excited about the Secondary Service Pledge as I am and I’m certain they will continue to strive for improvements in the future.
Although I know there is no cure for me at this moment in time, I feel very confident that the commitment of all the hospital staff and the passion and dedication of the staff at Breakthrough Breast Cancer and Breast Cancer Care will eventually result in a cure for this devastating illness. Whatever happens, I am very proud to have played a part, however small, in the care of secondary breast cancer patients in the future.
Lesley Archer is a patient representative for the Secondary Breast Cancer Service Pledge
If you'd like to find out more about the Service Pledge, please contact Catherine Wood, Health Advocacy Manager on 020 7025 0082 or email firstname.lastname@example.org