Medicine has always been a pretty one-way business. We know, they don’t. It is us that ask the questions, their bodies that slip under our knives. Patients of course have always had their own opinions, told their side of the story to families and friends in the pub, kept their own counsel around the factory gates and the water cooler. But mostly we have been ignorant whether they loved us or loathed us.
Today everyone has a public voice on the web, everyone can blog, or say exactly what they think of their general practice on NHS Choices. Cheap public voice on the web means that significant volumes of opinions have started flowing the other way. People, patients, carers – all can now say what they think of us publicly and for free.
When Patient Opinion (the website that I run) first went live we held our breath. No one had offered open, confidential feedback and published the results more or less in real-time on the web before. What would roll out at us over the screen? Would we be overwhelmed by the unremittingly angry as many had predicted, or go crazy with tedious hymns to angelic nurses? Four years later I am still often moved by people’s generosity – more than half of all postings are positive and only 5% hit our most critical rating. People are stunningly sensible and measured. In many thousands of postings you could count the number of obscene or racist comments that we have had to remove on one hand.
The reaction of hospitals has been more varied. Some have been puzzled, many indifferent, most conflicted. ‘Why would we want to cooperate with a website where people can just slag us off in public without us being able to control it?’ asked one Director of Nursing in a moment of off-message frankness.
Such reactions misunderstand the nature of the web: people are already blogging about your trust, or posting photos of NHS toilets on Flickr and clips of the hospital food on YouTube. Public voice has been democratised, comment is free. For the first time in history we can hear – if we choose to listen – what people think of us, how they would like their care to be different.
This can be scary because what we do to people can be grim:
he was sat in his own clothes soaked in urine, dirty cups and unfinished lunch … and a bottle of tablets [lying around], there was poo smeared on the floor on his clothes and his shoes, toilet roll with dirty toilet paper inside it…
These are stories from the heart – and all too often the pathology is us.
The regard of patients has always been important to us. Their gaze and largely unspoken perceptions part of our where our self esteem is rooted. Becoming the subject is uncomfortable. It pierces our armour, cutting straight to our primary self. Without our customary shells we scuttle for cover, reaching for defence and dismissal.
But many patients just want to share their story, to make sense of what has happened, to set it out publicly. This ability to speak even whilst ill and vulnerable has therapeutic benefits.
Our son was just twelve days old when he died. Throughout this distressing time the staff on the Neonatal Unit were outstanding. They treated him with dignity throughout his short life..… the staff made us feel that his life was as significant to them as it was to us. Nurse Jan made a print of his feet and hands and put them together in a card with some clippings of his hair. On Father’s Day there was some chocolate for me that was labelled from him
Add the promise that, by sharing what you have learnt, you might be able to help improve a small part of the world for everyone and the sick are offered that most precious thing, the possibility of themselves being needed for their insights, of giving something back to the community of the well, just at the moment when they feel at their most powerless. So we should be wary of always putting ourselves centre stage when we dip into this new stream of stories about our services. Yes, there are often things we need to hear, but the real promise of these online stories is not that they are about us, it’s that they are about them. Democratised voice gives us new versions of patient’s experience, told on their own terms. For the first time the private dialogues that patients have always had about their illness and about us are audible. As this revolution unfolds medicine is likely to become more mutual, our sense of ourselves and of our ability to heal, more explicitly bound up with these new, public conversations that we can neither control nor ignore.
Paul Hodgkin is a GP and Chief Executive Patient Opinion, a not-for-profit social enterprise