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Paul Hodgkin: It’s a two way street now

20 Oct, 09 | by julietwalker

Paul HodgkinMedicine 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

2 Responses to “Paul Hodgkin: It’s a two way street now”

  1. Paul : I must have been on another planet for I have only just dicovered your wonderful website Paient Opinion.
    One can only agree with your statement above and endorse your noble mission but I wonder how often doctor-patients have cited or even shouted about their encounters with medical/nursin/dental fraternity.

    Unfortunately, I have been “at the receiving end “,so to speak , in the past 13 years and I now that I have discovered your forum , I don’t know where to begin.

    As a regular blogger elswhere and newspaper contributor, I am aware of the fundamentals and the pitfalls all correspondents need to be aware .

    Nevertheless, would you be kind enough to tell me your Terms and Conditions for blogging on Patient Opinion while I gather my thoughts and hunt for note books in which I have reposited my experiences as , arguably, an informed and relatively balanced observer..

  2. Now more people than ever are ‘re-turning ‘ the gaze in all sorts of ways - importantly are able to share information and opinions without being censored, ignored, vetted or vetoed by groups with vested interests in keeping the authentic voice of people silent. It is interesting to see how some groups of medics are suddenly taking an interest in ‘consulting’ with their local communities.Hopefully local people will not be duped - it may look as though equality of input is being taken seriously but often this type of activity becomes patronising, disempowering and totally tokenistic.. In a democracy one group does not ‘allow’ others to take control of their lives - it is a more a fluid exchange betwen all sorts of groupings and individualss.. Patient opinion has been in the forefront of empowering people to use their own voice - it is interesting and rather sad to realise how fearful many healthworkers have been. Using informaion available freely on the site could provide a forum for suggestions as to how to develop a more collaborative organisation where relationships are failing. Patient Opinion is of course in a powerful position itself now.it would be good to know how information about it’s activities is going to be shared/how P O is going to share information it gathers democratically with all participants. So often as organisations have grown and become reliant on funding or the goodwill of influential groups,conflicts have arisen and ideals fallen. Power and control are not easily given up……..

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