Breast Cancer Now's Service Pledge programme helps breast care services across the country involve their patients and front-line staff in reviewing services and agreeing patient-centred improvements. Patient Advocates, who are trained volunteers that have a personal experience of breast cancer, play a key role in the Service Pledge.
They attend patient workshops to understand local patient concerns and suggestions for improvements, work with hospital staff to support discussions around patient and staff feedback and help identify suitable improvements.
Anna Sarphie is a trained biochemist and psychologist, a single parent of teenage boys and has also had breast cancer. Here she talks about how becoming a Patient Advocate for Breast Cancer Now helped something positive come out of her own experience.
I was diagnosed in 2012 with a grade 3, triple positive tumour that had spread to two lymph nodes. I’ve had surgery, chemotherapy, radiotherapy, a year of IV Herceptin, and I’m three years into a decade of Tamoxifen. Most recently I’ve had several surgeries for a double mastectomy and implant reconstruction. So I consider myself to have a relatively broad experience of breast cancer treatment – a bit of a Jack-of-all-trades perhaps.
Playing a part in improving experience of care
Having been through all of that I really felt that I wanted something positive to come out of my own experience of cancer and so it seemed the perfect opportunity when I saw a call for volunteers on Breast Cancer Now’s Facebook page.
I was immediately interested in becoming an advocate on reading that the Service Pledge aims to give patients a voice and, in doing so, improve their experience of care. This seemed to me to be an incredibly worthwhile project because when you’re a cancer patient, it is often hard to feel you have a voice or much control at all in the process.
The route to becoming an advocate was relatively simple. I had an informal phone interview, some online training and then I received a copy of the patient feedback report to read through before the patient workshop.
I have to admit that I was pretty terrified about the workshop, but I needn’t have worried. In fact, it was truly humbling and inspiring to meet all the brave women I did on that day, each with their own experiences and stories to tell. Of course, as a cancer patient I could recognise my own story in many of theirs, but as an advocate I had to try to be as objective as possible because this was their story, not mine, and I think my science background helped me be more objective.
After collating all that had been said in the workshop, we had to present what we’d learnt to the staff at the hospital.
Championing the voice of breast cancer patients
Advocate literally means ‘a person who puts forward a case on someone else’s behalf’ and that, for me, is the most important aspect of my part in the Pledge. But more than that, the responsibility of bringing their voices to the staff felt like an honour to me.
I don’t know what I was expecting from the meeting with the staff – a bit of a battle perhaps – but the response was both considered and positive. I felt that they really listened and genuinely cared.
As I’d hoped, being an advocate for the Service Pledge has certainly made something positive come out of my own experience. But more than that, it has given me my voice and my sense of control back, as much as it aims to do so for the local patients. For that I have Susanna and Breast Cancer Now, the staff at Sandwell and West Birmingham Hospitals and, most importantly, their patients to thank.
Has Anna's story inspired you? To find out more about the Service Pledge and becoming a patient advocate, take a look at our Service Pledge page.