"In times of change the learners will inherit the earth while the knowers will find themselves beautifully equipped to deal with a world that no longer exists."- Eric Hoffer

One of the goals of the NHS Future Forum was to put accountability and patient involvement at the forefront of how hospitals and trusts operate.

The web has already transformed the business world, changing our relationship with sectors such as music, journalism, advertising and retailing and it’s just begun to have a similarly transformative effect on healthcare.

Fifteen years ago the only way to publicly raise concerns about local health services was to get a letter or story published in a newspaper.

The web has changed all that. Everyone from the high street retailer to the local hospital can be held accountable in a public, on the Internet. Through social media anyone can blog, tweet, or post a photo of a dirty ward on Flickr.

All this shifts power away from institutions and towards citizens – but having a voice is not the same as being heard. Without engaging busy staff, the angry just shout louder while the quiet folk leave.

This puts the onus squarely on health services to proactively interact with patients in an authentic and engaging way, and with the wealth of tools available thanks to the internet and rise of social media, there is no way they can shun this responsibility, while maintaining public credibility. 

We all know that the experience of being a patient is central to understanding the effectiveness of services, and how they can be improved. And the web is becoming a vital tool for listening to patients.

On Patient Opinion we ask patients and carers to share their stories of recent health care experiences with other people. We publish them for anyone to read and learn from. We tag the stories, and link them to the relevant part of the NHS system so that health care providers and commissioners can easily find feedback about their own local services.

The health service can register for free with Patient Opinion, to be alerted to relevant stories and if they want respond public, and even showing when a service improvement has been made as a result of a story.

When a patient shares their story online, there are no pre-set questions, so they can talk about what is important to them. This freedom is not allowed in the standard patient satisfaction survey, and allows patients to raise issues of which staff may be entirely unaware.

As a case in point, the following posting was contributed by a man on an orthopaedic ward in Northampton Hospital:

“I liked the love, care and attention of every member of staff, it was terrific.

“What needs improvement are the toilet seats. Those on the wheelchairs and those fitted to the home toilet, they are useless. They are only made for women, men cannot sit and urinate and open their bowels as men’s genitals will not sit inside the opening. This means one has to [sit down to use the toilet], then stand and turn to urinate. With a knee/hip replacement operation it becomes like mission impossible. I spoke to eight other men who agreed.”

Five top tips, to help health services make the most of online feedback

This article was first published by the Health Service Journal on 15th Spetember 2011

So the CQC find that in one in five hospitals the care of the elderly is poor. No surprise there given the stories we are often told on Patient Opinion. So will the Health and Social care Bill that squeaked through the Lords yesterday make any difference?

If we set aside all the organisational turmoil of making the changes (a big set aside I grant you) will the reforms once fully in place make any difference?

Our guess here at Patient Opinion is sadly, probably not. We don’t doubt the sincerity of the Secretary of State in wanting to put the patient squarely at the centre of things but the NHS still wants to do this on its own terms. Look at its behaviour – even in the way it seeks to put patients centre stage – it’s still deeply focused on its own needs: You answer the questions that we put in our questionnaires. We look at the results and if you’re lucky you might see the occasional change.

Nothing wrong with this except it is the NHS itself and its own needs that are taking centre stage, not the patients’. Out there people want be part of a conversation as they are on FaceBook and Twitter and they really don’t see themselves as feedback fodder any more.

So what would make a difference to how we care for elderly people? Saying ‘Lessons will be learnt’ is no longer adequate. Indeed after so many inquires and debacles the next politician who says this kind of thing (no matter if it is true) is likely to be lynched by the media.

What we need to do is to make the desire to listen a reality, and for the first time ever we can move beyond platitudes and start to do this in ways that give the patient’s side of the conversation real power. The next time there is something like the CQC report telling us of yet another dreary failure, the response from Andrew Lansley should now be: ‘You’re right. We messed up. We know we need to listen. And we understand that you may not trust us to right now. So we want you to tell us what you think of the NHS, good and bad, in public, confidentially via independent sites like Patient Opinion. And we guarantee to reply, in public to every single story.’

Now that really would signal a sea-change in the scale, transparency and power of the patient voice.

 Here at Patient Opinion we often feature in not only the national / local press but also in the online press. Press coverage is vital to assist us with getting our message across and  ensuring enough people know about us to join the conversation about standards of health care.

We are planning to expand our press coverage / reach over the coming months and hope that you will notice our increased profile. Part of our planned press expansion is to feature regularly in the excellent local press here in Sheffield, Rotherham and Doncaster. We recently featured in the Sheffield Star (June 2nd) who covered our expansion into Scotland as part of the Better Together Pilot Scheme for NHS Scotland.

Since the publication of our report "In their own words" we have featured on the Radio 4 programme You & Yours, Talksports Matt Horde show, the Daily Mail, The Guardian and the Sunday Mirror. Watch out for us appearing in the national media very soon.

Further information on some of the coverage we have received is detailed on our website. Should you wish to feature anything from our site or have any other media requests then please familiarise yourself with our press policy visit here>>>> first and then contact our media officer Kate Ebbutt for further information.

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!