Patient Opinion's mission is to carry the experiences of patients and carers into the heart of health services, where they can make a real difference both to how staff feel about their work, and to the services they provide every day.

Sometimes our progress feels painfully slow, but this week two things really lifted my spirits - and then something else brought me straight back down to earth.

The first lift came from Devon, where the Royal Devon and Exeter Foundation Trust is just getting underway with Patient Opinion. Instead of just setting up one or two staff to receive all our email alerts, they've decided to set the ball rolling right across the surgical directorate.

So that's 80 senior members of staff at the trust, new to Patient Opinion, and all standing by and waiting to hear from their patients and carers. Impressive commitment to the new world of social media!

The second lift was from the other end of the country, where we saw this exchange follow feedback about the Scottish Ambulance Service.

After an unhappy experience in the ambulance and A&E, the patient posted their concerns on Patient Opinion. The service was able to respond online, reassuring the patient that raising these issues would not compromise their care - which is, of course, one of the most important barriers to honest feedback.

The patient was reassured, and has since met with the service face to face, posting on Patient Opinion that: "I felt comfortable and free to say what I needed to and I feel very validated and understood."

I love this story not just for the happy ending, but because it shows how conversations which can't begin in person can begin online, continue face-to-face, and finish up online again.

So what brought me down? A call to Patient Opinion from someone with a serious long-term condition, a longstanding user of services at a well known teaching hospital. The patient had had a poor experience at one of the hospital's clinics. They sent in a written complaint, but received no response, so after a month they posted their story on Patient Opinion.

It wasn't long before the phone rang. It was a member of staff at the hospital, who refused to give their name. The patient was told: "Withdraw your complaint, or we will withdraw care."

We still have some way to go, it seems, before some health service staff see patient experience as a gift from which they can learn.

This morning, the NHS Information Centre released a report on complaints data from across the NHS.

No major news in terms of the number of complaints, a 2.4% decrease when comparing to the previous year and a 0.5% increase when comparing the 352 trusts that supplied data for both years. But there lies the more significant news.

There are 11 trusts that have chosen not to submit their complaints data for both the 2009-2010 report and the 2010-2011 report. Disappointingly this year, 18 further trusts who submitted their data in 2009-2010 withheld their information this time round. This means that of the 137 FTs, 29 have not submitted their complaints data.

We’re disappointed by this. Quite apart from the fact that the Government’s Transparency Agenda calls for all patient feedback to be public, patients have demanded for a long time that the NHS be more honest and open in it’s communication. If the health service really is dedicated to transparency and accountability then there must be a system in place to ensure that the public can see patient feedback across all trusts, and not just those that choose to release it.

It's very difficult to see how these trusts are taking complaints seriously when they refuse to be open about their patients’ concerns. This data also fails to provide the full picture of patient experience, as it only includes written complaints and not the growing trend towards online feedback.

There’s been some significant criticism across the national press and from patient organisations today towards the FTs that have decided to ‘opt out’ of this complaints report, so we’ll be very interested to hear the reaction of the trusts over the next week.

We hope that the ever increasing pressure from patients will encourage the trusts who have shied away from transparency to truly understand the need to be accountable to the people they serve.

Today's Daily Mail coverage, with Paul's comment

Today's Daily Telegraph coverage, with Paul's comment

Today a damming report was issued by the NHS Ombudsman in which it pulled no punches in its opinion of the standards of NHS care for the elderly. The report outlined 10 particular cases where it said that the complaints it received were "harrowing" and the ultimate conclusion was that many of the elderly were denied the "most basic" of human needs. Ms Abraham, the reports publisher, warned that these were not simply isolated one off cases and that the NHS required a deep reform of its attitudes regarding the care of the elderly. Should you wish to view the full report is available here:>>>>

Part of this reform, in her opinion was the requirement for a more consistent approach to complaints handling. She was critical of the fact that it required great tenacity to see a complaint either through the system, or ultimately to the Ombudsmen. The first stage of any complaint is generally channelled through the local health trust or the GP practice.  She acknowledged that this often leads to a dead end and that many simply gave up on their complaint. "it's just so extraordinary when you think of so many organisations who would think that that kind of feedback was gold dust when it comes to improving their services." She often heard complainants who simply said "It's not worth speaking up, nothing ever changes"

At Patient Opinion we are all aware that the more independent opinion is deemed to be - the more valuable (and more likely it is to be taken seriously) it is to all concerned. Earlier today in a routine check on our web statistics I noticed a particular visit from a NHS trust using the search string "XXXX (the name of the hospital) complaints". Being somewhat curious I followed the link from the web tracker and saw exactly what pages were being visited. The hospital representative was of course checking out stories of their own hospital on the Patient Opinion site. It would be correct to say that of the stories posted on our site not all were complimentary. In fact, more than 50% of the most recent stories were all concerns that were critical. I decided to follow through and visit the hospitals own site and took a glance at the feedback / stories page. The trust painted a very rosy picture with not one of the stories critical - yet switch to our site and you saw a very different view from the patients and users of the services at this hospital.

Now I suppose it would be somewhat odd for hospitals and trusts to allow the posting of critical stories on their own website, perhaps a bit like a turkey voting for Xmas! Then of course one would wonder if patients and relatives would be reluctant and wary of posting negative experiences direct on a trust or hospital website, according to Ms Abrahams they probably wouldn't consider it worthwhile! That is where services like Patient Opinions' or even NHS Choices, to a lesser extent, come into their own as it encourages people to leave feedback anonymously with no interaction with the hospital required.

Now the purpose here is to not necessarily play on negatives, in fact a large majority of stories on Patient Opinion are indeed "thankyou" and "well dones", it is important for the health service to know when it is performing well, just as much as when it isn't. However to gain a true and rounded view of a hospital one does need to escape from the official line and here is of course the value of independently categorised feedback and opinion.

Perhaps Ms Abraham might like to give us a call!

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.

The call went out last Friday – and  lo! The site was up and running 28 hours later thanks to some great work by the direct.gov team. Eat your heart out Connecting for Health.