Today saw the publication of Health Minister Lord Darzi’s report High Quality Care for All, containing “ambitious plans" to raise the quality of healthcare for patients right across the NHS.

According to the NHS site Our NHS, Our Future, “High Quality Care For All sets a new foundation for a health service that empowers staff and gives patients choice. It ensures that health care will be personalised and fair, include the most effective treatments within a safe system, and help patients to stay healthy.”

So far, responses to the report have varied.  In response to the recommendation that hospitals are to be fined or rewarded with financial bonuses of up to 5% of a hospital’s budget based on what patients think of the quality of their care, a post by Tom Reynolds on the very enlightening blog Random Acts of Reality notes that "Giving patients choice is a fine idea in principle, but for many of the patients that I deal with they just don't have the knowledge to make an informed choice on their treatment.”

Careworld.net, a blog aiming to “highlight the inadequacies, the poor decision making, the hypocrisy and their consequences”, points out that the reports is “silent on the issue of the NHS top down highly bureaucratic structure…” noting that  “this is an important opportunity missed.”

The Jobbing Doctor, whilst acknowledging that dissection of the review over 2-3 weeks is in order, describes it as “a sagging souffle” and “a hugely disappointing review.”  In my considered opinion, whatever the responses to the review, it at least has identified that staff must be empowered to make real changes, and so effectively address ever increasing expectations from a public who are constantly being told that the NHS is to be led by them.

The challenge now is to turn Lord Darzi's vision into reality, in a notoriously slow moving and heavily bureaucratic NHS.  Practically speaking, Patient Opinion aligns well with Darzi's key recommendations, providing support to staff by demonstrating exactly what it is patients want and need, based on their experiences, suggestions and comments and providing support to patients by helping them make informed choices about their care.

As it’s been a great week for recognition (we’re finalists in the UK Catalysts awards and the New Statesman New Media awards), maybe we can forgive Lord Darzi for choosing to mention NHS Choices but forgetting to mention Patient Opinion in his plans for a high quality NHS.

Patient Opinion is a finalist in the New Stateman's new media awards, in the "community activism" category.

Which is nice. I'll let you know next week if we won anything, or just went home with the "50p off your next purchase" tokens.

Hmmm... now where's my dinner jacket? Oh yes, at the Oxfam shop. 

Last month, Patient Opinion’s own James Munro attended NESTA’s flagship conference The Innovation Edge.  NESTA supports innovation across the UK, and have generous in providing their enthusiasm, time, expertise and funding in support of Patient Opinion’s expansion to cover mental health services across England.

James was interviewed at the event, where he spoke about Patient Opinion and more specifically, the mental health pilot with the 5 Boroughs Partnership NHS Trust in Warrington. When asked about the potential difficulties which can be experienced in making changes in a monolithic bureaucracy like the NHS, James noted that sometimes improvements at ward level were easier than making wider organisational changes.  My experiences support this – the closer you get to the frontline, the more you are likely to make a difference to patient care.

The video contains some really key messages about what Patient Opinion is doing, and emphasises that improving care should start with the patients and users of the NHS

Occasionally I realise that my Spanish O level has more uses than just helping me order tapas and beer while on holiday.  It has enabled me to read an interesting post from Javier Llinares Salas on Health 2.0. (If you don’t read Spanish you can get an idea of what’s being said by copying Javier’s post into Babelfish.) Javier talks about private web 2.0 initiatives which supplement and intend to improve the public service they focus on, which enable the public to have some control over the services they receive.  One of the examples he mentions is FixMy Street.   

Patient Opinion gets a mention from Javier, as one such tool which gives power to the patient.  For Javier, sites like Patient Opinion represent a radical change for the administration of public services, helping to move towards a truly patient-led NHS.  In his words “The revolution has begun.”  

Patient Opinion is also getting some great press from it’s inclusion in the e-Health Insider report on Web 2.0 in the health Sector, where Patient Opinion is described as

 “...a standard bearer in connecting public feedback into the development of health services”.

(thanks to Explain Health for publishing that particular quote). 

Patient Opinion is working to improve patient care through patient stories  - as Internet Artizans describe us, we are “using the web to pack a social punch”.   Others have similar thoughts about the how patient experiences might help create a better healthcare system.

Richard Smith’s article in the Guardian last month describes how an online database Cases Journal is aiming to collect information from patients about their conditions, to help others with similar conditions, or combinations of conditions, find useful information to use in conversations with their own GPs. 

Smith highlights the fact that people with 3 or more conditions (heart disease, diabetes, asthma, chronic respiratory disease, arthritis, depression etc) account for 80% of healthcare activity, but, as Smith says “randomised trials that provide the best evidence tend to leave out patients who have more than one condition in order to limit the number of variables and aid interpretation.”

This is where patient experience comes in.  The idea is that you can search the Cases Journal database, find a story which is similar to your own, and then have some "evidence" for helping you and your doctor to decide what to do.

When all we rely on is targets, numbers, stats and “quantifiable” evidence, we sometimes lose sight of the information which can help us make choices about complex situations.  We can learn so much from experiences, in terms of understanding the human side of any situation, to add and compliment the scientific knowledge we already have.

Just like Patient Opinion, Cases Journal is using the real experiences of patients to improve care, and contributing to sites like these can help you make real difference to your own and others lives.

Interesting, inspiring - and perhaps also a little depressing - to read the interview with Liz Miller in this week's Society Guardian.

Liz Miller is a doctor (previously a neurosurgeon, now an occupational health physician) who has campaigned on mental health issues since her own diagnosis with bipolar disorder (manic depression) 10 or so years ago.

She describes the pervasive sense of denial in the medical establishment about the possibility that doctors may need support: "'Doctors don't have mental health problems", she was told.

Depressing, then, that there is still so much denial and stigma around the problems of mood, meaning and thinking that so many of us face. But inspiring that, little by little, courageous people like Liz and others continue to tell their stories and in doing so speak up for us all, and continue to push back the boundaries of what can be said, and talked about.

All very well of course but patients are rarely in a position have the NHS ‘handed back’ to them. They’re ill, vulnerable and frankly got more important things to do. And leaving it all with the docs still less the managers doesn’t seem like the right answer either.

So what’s to do?

Well at least part of the answer has to be to get with the web. The internet may be revolutionising banking and tearing the travel and music industries to bits, but so far the NHS — that great dowager duchess of the public services — has sailed on relatively unperturbed.

At Patient Opinion we’ve managed to learn that personal stories can have a real impact.  Just by sharing experiences, NHS organisations can be encouraged to make positive changes like providing information for maternity patients and acknowledgement of concerns.

The Archers gets five million listeners every episode.   In January, 12.5m viewers tuned into Coronation Street as Vera Duckworth bid farewell to the soap.  We love our soaps but patient’s real life stories can be just as dramatic.  What’s more - unlike Eastenders  - it’s all true. The effect of stories like this can be profound.

Illness is often a search not just for diagnosis and treatment but for meaning – what does my life mean now I’ve got cancer? What did I do to deserve multiple sclerosis? Why did my heart attack me?  That’s why there are so many great self help sites, where you can share what it feels like to find your self with diagnoses like Diabetes, Parkinsonism, Hepatitis and a thousand others.  But another way to discover the meaning lying behind the story of your illness is the ability to help others in the same situation. And this is where Patient Opinion comes in because stories don’t just help us, they also help staff to understand the changes that need to be made to help every patient get the service they need. 

With a patient’s story, staff can clearly see how they can help patients have a better experience.   Patient’s stories are the perfect starting point for any discussion about how they can make changes for the better, as Rotherham Acute Trust recognised when they read this story from one of their patients. 

This particular story is now a focus for discussions within the hospital, for raising awareness about the emotional nature of patient’s experiences, as well as their practical needs.  It will help staff to understand the human elements of care, and act as a catalyst for improvements.

From time to time (well, about every half an hour) we sit around the PO office throwing around ideas about how our site needs to develop now. What's the next leap forwards?

One idea that comes up a lot goes something like: "Wouldn't it be great if people could use the site to find other people who face the same challenges/have the same condition/live nearby/use the same hospital?"

And it is a great idea. And I suppose, because of the enormous myFace hype, everyone thinks everything has to be a social network.

But the last time we had this conversation, I realised something: that doesn't really excite me. I can see how helpful it can be to find other "people like me" and support one another. But somehow, I don't want to build one myself.

What did excite me was when we went to the HQ of Which? in London a few months ago. In their reception they have a big slogan on the wall that says something like "The aim of Which? is to make consumers as powerful as the organisations they have to deal with".

Now that does excite me. For me, the aim of Patient Opinion is to help the voices of patients and service users become as powerful as those of NHS organisations. After all, it is our NHS, and it means a lot to us.

Working in the NHS its often hard to see that some things are getting better. And then along comes a posting that shows you just how much things have changed. For most of the 25 years that I have worked as a GP miscarriage has been a condition that was commonly trivialised by doctors and nurses as "Oh, its just a miscarriage". But this  moving story shows how attitudes - at least in some units - have changed for the better. Which also says volumes about the work of the Miscarriage Association too.

Paul

Chief Executive, Patient Opinion (and part-time GP!)