Now that postings about mental health services are beginning to roll into Patient Opinion we’re starting to get into some really interesting issues. For example how to disentangle ‘paranoid ideation’ (as the psychiatrists would call it) from distressing events that really happened? Feelings of vulnerability and wondering if people are getting at us occur to everyone from time to time and for those who are acutely mentally ill these can become extreme. But some times some pretty awful things really do  happen in psychiatric wards or in the community and telling the difference between these two is never easy.  Sometimes people can be both psychiatrically very distressed and be experiencing very poor care which they have every right to complain about.  

Of course all providers of mental health struggle with similar issues when dealing with some complaints.  What is different for Patient Opinion is that published stories can be seen by anyone.  Since all we have to go on usually is the story itself we try and balance three different audiences:        

•  the needs and vulnerabilities of the service user who has posted
•   the needs of the staff and organisation
• the needs of future users of the service. They may benefit from frank disclosure of poor practice. Or be unnecessarily put off by feedback about a service that is based on delusions rather than on reality.

And keep the following principles in mind:

•  the ability of everyone, not matter how ill, to say useful things about their care
•  the need to highlight poor practice in ways that make improvement more, rather than less likely.
• our need to protect people who post stories whilst in a vulnerable state.   

In practice this means that such postings are first discussed by our editorial team which includes a GP and a mental health social worker. These are some of the most interesting and lively discussion we have as we try and balance all these rights and principles.  Quite often we edit postings (in line with our editorial policy),   aiming to focus the story on what actually happened and remove assertions about motive or beliefs about why the events happened.

Sometimes we email the service user back and say that we will publish the story but only after waiting 2 weeks and then checking back with them that they really do want their story published. This is a very productive route as often they change what they want to say over this period.

Finally we are thinking about whether for some of these stories are better suited to being shared with the Trust and the Care Quality Commission rather than publicly as these two organisations are better placed than we are to make these difficult judgement calls. Sharing them in this way could enable users’ voices to be heard whilst protecting them at vulnerable times.

But we know that we have not got all the answers. Any thoughts about how we could handle these situations better?       

Lots of organisations that we work with welcome Patient Opinion. But some see web-based feedback more as a trial than an opportunity.  Who needs web-based feedback when you've already got surveys, CQUINS, hand helds and your own internal system of PALS and complaints? The very things that appeal to patients and the public about Patient Opinion – that it is easy to use, free,  visible to everyone,  independent, impossible to control, and full of  anecdotes – are exactly the things that these trusts and managers fear.

Understandable but the problem with looking at the world (and Patient Opinion) in this way is that it assumes that because NHS organisations have been able to control feedback in the past they will still be able to do it in a world that is being re-shaped by forces much wider than the NHS, or government policy. We are used to running an NHS in which patients interact on our terms, use our complaint procedures, fill out our questionnaires – when now, out there on the web,  everyone  is already saying exactly what they think on their own terms.

Losing control of these internal procedures feels uncomfortable but actually represents a great opportunity. As a trust it means that something that was scarce and expensive – patient feedback – has suddenly become cheap and plentiful. Yes, that means news ways of working. Yes, it means that we have to respond in public rather than use complaints procedures that are bureaucratic, private and easier to control. But it also means it is now really easy  to involve every single team in the trust in hearing what patients are saying, reflecting on what it mean for good practice, and entering into a public conversations about what they are going to do to improve things.  And that has to be a change for the better.

Great to be part of the rebooting Britain release – even if I only managed to get there for the afternoon (due to having to do a surgery in the morning). And great that Patient Opinion got some good mentions from Jeremy Hunt, Lee Bryant and Charlie Leadbetter.

But was it a good day? Some people thought it didn’t reach far enough. But for me it was great to hear people like Lee holding forth on democracy. And Howard Rheingold who has been riding this territory out west for as long as anyone can remember and who signposted so much of it for so many of us.

I suppose at root the re-booting metaphor is a bit too easy to be a really useful key though. Turn off, wipe clean, switch on again is really not how humans or institutions work. A good hook to hang interesting stuff round but actually changing how the wetware works is much more interesting, absorbing and long-term than building the software and hardware.

And of course you can see Patient Opinion's contribution to the essays at The Independent.