Deborah Evans, Managing Director of the West of England AHSN, shares her experience of interviewing people as part of the 100,000 Genomes Project.
When I first joined the NHS, in a busy District General Hospital in the South Wales Valleys in 1982, I was inspired by the way that staff were all going the extra mile to support their hospital. They were raising money, volunteering, working extra hours and generally pouring their hearts into the NHS ethos of altruism.
I’ve always thought of my time in South Wales as more of an education than a training (!) but that impressive commitment has always remained with me.
Over the last few weeks a number of us have been doing qualitative interviews with people who have experienced rare diseases or cancer, and their carers.
The idea is that through the 100,000 Genomes Project, the NHS will be the best in the world at harvesting blood and tissue samples, so that we can learn more about the human genome and benefit from wider genetic testing to directly improve services for both current and future patients.
In our telephone survey work I have heard inspiring, first-hand stories from people who, when faced with cancer or a rare familial disease, have not only coped with extraordinary life-changing challenges for themselves or their families, but still have the commitment to contribute more for other people. Sometimes they have lost their partner or experienced the long term illness and disability of a child or sibling. Sometimes our respondents are facing painful, distressing disability themselves.
It has been humbling, challenging and uplifting to talk to these people who are, nevertheless, fundraising, volunteering in outpatient clinics, working with Health Watch or even playing national and international roles in non-statutory organisations to help people they’ve never met.
Through our telephone interviews we have, as always, gathered very rich and useful insights that will help us plan our new services for the West of England Genomics Partnership.
But for me it has been much more than this. Every person I’ve spoken to has reminded me why I joined the NHS in the first place.