One of the great things about building a platform like Patient Opinion is that people are always finding wonderful new of ways to use it that we have never thought of. Like the young couple using an addiction service who had a baby just 5 weeks old. They had had a few slip ups and used a bit of this and that other than their prescribed methadone. Terrified of having positive urines and loosing their beautiful new baby they could not ask their drug workers because then the cat might have been out of the bag. But at the same time they desperately wanted help.

The answer turned out to be sharing their story on Patient Opinion. They could see that the clinic was run by  PCAS who had a great record of responding to other requests on Patient Opinion, so they posted their story anonymously but publicly. That way they could get find out whether coming clean would end up with them loosing their baby. What is more everyone else can see the response too – which may be reassuring to other mums-to-be with an addiction problem. And one more vulnerable couple and baby helped to keep going, to not give up. 

Generic responses won’t do in these circumstances. Patients and service users need to know how this clinic, this medical director would handle the situation, not what NICE or the PCT recommends. And they will use the quality of the response to decide whether it’s to be trusted or yet more corporate speak.  Of course it’s not just substance misusers. If I had to have a coronary bypass graft, I’d want to know what the surgeon's mortality rate was and how many of these operations she did per year. But being British I’d be probably be too embarrassed to ask. But I would be happy to punt the question on Patient Opinion anonymously. And may be get an answer that helps everyone using that service.  

May be confidential conversations that can only be asked in public will turn out to be really common. And important.

Today we officially launch our mental health platform. Of course, people have been sharing stories about mental health services for a long time following our pilot in the 5 Boroughs Partnership back in 2007.

We're hoping lots of people hear about what we're doing and share their story. Jason, who's just joined the Patient Opinion team, is an ex service user and volunteer at primary care addiction services in Sheffield and has an inspiring story to tell about how the independence and honesty of Patient Opinion was crucial in bringing about change in addiction services. Even we're impressed listening to him! We captured him on video and the Society Guardian went one better and put his face on page 3 yesterday. E-health insider ran a story this morning and we know many regional and local papers and radio stations are picking up on the launch today. Phil Hope, Care Services Minister offered his support saying "This partnership means every single Trust in the country can see what they are doing well and what needs to be improved, helping to drive up quality."

Through the course of this year, we've been travelling the length and breadth of England talking to staff and users about what this will mean, how we're doing everything we can to keep the system safe (on both sides) and how the system will lead to real service improvement. It was important to us that we equipped staff with the understanding and skill to communicate directly and honestly with service users, their families and carers through the website . Much more importantly, we wanted to be sure that they knew how to take the comments, suggestions and concerns they would hear and do something meaningful with them. After all, that's what we're all about - making people's experiences count. According to Maria, Head of Service at the 5 Boroughs Partnership during our pilot, the stories she received through Patient Opinion 'made issues real' and gave her the opportunity to 'facilitate some real reflection among staff'. And we have lots of examples, across mental health and acute care, where trusts have demonstrated through their responses on the site that they're truly listening and taking value from peoples stories.

From past experience we know just how honest, passionate and thoughtful people can be on Patient Opinion. We also know that sharing their stories on the site can lead to real improvements in services. What we don't know is what you think of your local mental health services so please share your story and make a difference.

We’ve long wondered whether we should allow ‘sideways’ comments on Patient Opinion. That would mean that if you saw a posting about orthopaedics in Southampton that matched your own experience in Aberdeen you’d be able add your comment to the Southampton story.  This is a classic social media approach - users comment on each other’s pages and create content in a self-generating way. It would certainly have given us many more postings and much more content so why don’t we do this?  

Up to now we have had two reasons. The first is because we built Patient Opinion to in order to help patients staff and service users to improve health services. So we wanted to keep each thread of conversation focused on what was wrong (or right) in Southampton. Allowing comments about Aberdeen might help deliver this if by linking similar problems we increased the likelihood of services in both places improving. But this seems unlikely to be the case. Even where patients  are talking about the same class of problem the answer is usually very context specific – in other words Southampton have to work out the right solution for them because, even for apparently identical problems, local answers and implementation will differ. Secondly we felt that lots of comments of ‘the same thing happened to me in my hospital’ type could turn Patient Opinion into a place to moan rather than one focused on local change. 

In the last few days three things have convinced us that we are right not to be seduced by the received social media wisdom and to stick to our current approach where single issue conversations highlight  and (hopefully) resolve particular concrete problems in specific services.First I was talking with Hugh Flouch of the excellent Networked Neighbourhood site who pointed out two things. Firstly if you allow members of the public to comment on other people's postings then things can get pretty fierce and this puts people off telling the stories they really want to tell.  After all it’s hard enough posting the story of your colonoscopy without having other members of the public comment, criticise or flame about it.Secondly have a single strand of conversation makes it much easier for the hospital to hear what’s being said. On community sites the very diversity of opinion can make it hard to tell what people want to be done differently. Finally I heard an interesting story from a mental health trust CE who said that they had had to ask the local paper to remove a story from the paper’s website. The on-line discussion itself was very positive about the trust but the fairly vigorous  hurly burly in which it was being waged on-line was clearly stressful to the people involved – many of whom had only recently left the care of the trust.   

So we’ll be sticking to single issue strands of conversation on Patient Opinion. Seems like a certain purity of purpose may be both more effective at generating local improvements and healthier for patients and staff  alike.      

The Patient Opinion team has been out and about this week – James, Kate and Miriam in Manchester with our Northwest subscribers and Paul, Tim and Amy in Maidstone and London training mental health trusts to use our new mental health services. It was great for us to meet all the people who came to these events but the high points were two barn storming presentations by people from outside the PO team.

In Manchester we had Maria talking about her experiences using Patient Opinion as head of services at 5 Boroughs Partnership Trust. Maria’s enthusiasm for the way that PO helped her track what is happening on the front line across all her busy areas of responsibility, and to use this feedback to help staff actually make the changes that service users were talking about, clearly impressed the other managers at the meeting.

Meanwhile down south Jason told the story of how as a volunteer at Sheffield’s Primary Care Addiction Services he had been helping service users get the changes they wanted. The first big issue coming up on user’s stories was frustration at not knowing how long they had to wait for their appointment – if they went out for a smoke would they miss their appointment? Why were people going in before them? Just giving out more information in reception quickly cooled the tempers that had often been fraying.  As Jason said: ‘I never lack from a cup of tea from the receptionists now!’

Once this was out of the way and users began to trust the independence of the PO service and the willingness of PCAS to listen, more interesting uses quickly emerged. Having found a way of asking questions anonymously and getting sensible answers back, service users have begun to ask the clinical questions that they have been afraid to ask. ‘We’re still users and have a young baby. How can we get help without any fear that social services will come and take our baby away?’

So what have we learnt? That you need three things to really begin to make PO fly:

·         a steady stream of postings,

·         willing and enthusiastic managers,

·         And involving lost of staff over among enough time for them to really begin to experience the power of users’ stories to help them deliver better services.

It’s also clear that using volunteers like Jason is great way to do this, especially for groups like substance misusers who are skeptical and suspicious of services. 

And if you do this, then your staff and your users will not only tell you useful things, they’ll probably start using the service in ways that you (and us at PO) never even expected.

Oh, and one last thing. If we want to really convince busy people from the service of the benefits of Patient Opinion then we’d better use as many service users and front line managers as we can to speak for us as they are so much better at convincing other managers and clinicians of the benefits of using Patient Opinion than we at PO Central will ever be! So thanks Jason and Maria!

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?