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In the second of two blogs to mark 70 years of NHS Cancer Care, a nurse who is a carer for her husband looks at how the patient voice has grown over the decades and explains why hearing it is important for the future:
When I started on the wards five decades ago there were two voices; one was that of Sister, who ruled everyone on her ward with a rod of iron, and the other was that of the Consultant.
He – for it was always a man – was the voice of knowledge and authority. He told Sister what was to be done and he told the patient what he thought he should know. I hid in the sluice.
I have been nursing in the NHS for nearly 50 years and, thankfully, times have changed. We are all free to speak – but how we use that new-found voice is so important. My work with the East of England Cancer Alliance as a Patient and Public Voice Partner on the Patient Advisory Board is one of the best opportunities that I have ever had to improve care for all our patients now and in the future.
My husband has stage four multiple metastatic melanoma. I want our story to be heard but, much more importantly, I want our story to be sought out by the healthcare system. I know my opinion is shared by many and my challenge is how to be heard and valued, without being overly emotional or totally subjective.
I work alongside other people on their cancer journeys and they tell me so many accounts of care in the NHS. Many tales of exemplary care but also tales of when things could have been different. I am challenged to represent all these people in a non-judgemental and kind way.
In all my years in the NHS I have never met anyone who didn’t want the best for their patients. Occasionally, in the rush and chaos of the sheer business of a hospital, words come out in a rush, notes get lost, appointments are late and mistakes get made. Words come out wrong and patients feel hurried along and not heard.
There is no free time for clinicians to reflect and the pace is relentless. But sometimes these quick words fail to give the whole picture. Patients don’t understand, don’t feel listened to and don’t feel valued. It’s our job, as patient voices, to keep the dialogue going; to listen to the clinicians and listen to the patients and their carers, and to explain the inexplicable.
The work of the Alliance is of such enormous value. Of value in the huge clinical advances, of value in the planning of new pathways; crisp, efficient, effective, smart ways to deliver care swiftly and with kindness.
For me, the greatest value and potential for the future lies in the commitment to listen to the end user – the patient and the carer – and to act on their feedback.
- Read a cancer care blog by John Reeve – a Public and Patient Voice member of the East of England Cancer Alliance Board