Patient Opinion – partners not pen pushers

Last week there was a little storm brewing in my twitter stream. Patient Opinion, who have been an active participant on social media and have been using it to power good for a number of years, were suddenly inundated with concerns for their future. Tim Kelsey, the National Director for Patients and Information at NHS England had given an interview to The Guardian re-launching plans for NHS Care Connect.

Paul Hodgkin, the founding father of Patient Opinion has written an incredibly informative and dignified response, setting out what has happened so far and their plans moving ahead. It’s worth reading that as context to my thoughts…..but do come back!

I should start with a disclaimer. I’m an unashamed Patient Opinion fan girl, I’m invested in them, their work and their ideology. If I was feeling melodramatic I’d tell you that three years ago Patient Opinion changed my life! In fact given there is so much confusion and bold claims and aspirations coming from the NHS England camp, I’ll stick with that statement. I had the privilege of attending an unconference organised by Patient Opinion and heard a descriptor of an angry patient that was a little too close to home. Up until that point I wasn’t aware that I was so angry, but really it’s no surprise. My Dad was diagnosed with cholangiocarcinoma (bile duct cancer) six years ago, and he experienced the very best and some not so great treatment from the NHS. He died last year having lived far longer than anyone expected. This post isn’t about Dad or his care though, it’s about what Patient Opinion did for me.

1. They allowed me to realise that I was angry and hurting

I was angry at life, at cancer, at myself for wasting so much of my teenage years bickering with my Dad. I was angry with the ‘system’ being understaffed, the overworked staff who made mistakes through little fault of their own, the mush that was passed off as food. I was (and if I’m honest probably still am) angry with the junior doctor who with all due respect-ed me (needless to say there was no respect to that statement) and tried to send my Dad home with antibiotics during the swine flu outbreak because he didn’t want Dad spreading his germs having scored high enough on his checklist that he was certain he had swine flu…..one day I’ll write that blog post, safe to say a second opinion found Dad had septicaemia that required two weeks of intravenous antibiotics to shift. Hearing someone outside of the NHS talk about angry patients was like a penny dropping for me; I had to stop being angry and start working to improve things.

2. They convinced me of the value of story 

I’m a researcher. I like data. Evidence. Anecdote, story and narrative just doesn’t cut the mustard….or so I thought three years ago. My write up from that conference was quite clear about this:

Stories are everywhere; we all know that they’re a good idea, we know they’re the secret to winning hearts and minds and that without them we can kiss goodbye to any real behavior change. Let’s take that as a given. What I desperately wanted to know, and the nut I failed to crack today but hope to muse over further in the next few months, was how do we use stories and, most importantly, how do we know they’re effective in making changes? This is really a question of how do we apply them to instigate change, not why should we use them, or whether they are valid….

Except what Patient Opinion are able to evidence is *real* change. A quick click here will take you to their website where you can transparently see the changes made as a result of the stories shared. Evidence not anecdote.

3. They inspired me to share my story 

One of the biggest challenges of cholangiocarcinoma is how rare it is (1,000 new cases in the UK each year and 2,500 in the US and an annual incidence rate of 1-2 cases per 100,000 people in the Western World). That means with all the will in the world the NHS isn’t too familiar with it; we were exceptionally lucky that my Dad lived an hour or so from our regional specialist at Derriford, but there aren’t many people who know an awful lot about it. There certainly isn’t much information online about it, relative to most cancers or illnesses anyhow. I started blogging in earnest after that Patient Opinion conference because it felt like some small action I could take, to share my experience and hopefully provide something of use to other people – something I’ve had repeatedly confirmed in recent months. I doubt I’d have done that if it wasn’t for Patient Opinion and the catalyst they provided, for us all to work together to improve things.

4. They engage(d) me

The thing is Patient Opinion is a social enterprise, and they really take the social element to heart. They’re not a feedback mechanism per se, they’re not a bunch of faceless bureaucrats trouble shooting the NHS, they’re way more personal and social than that. A quick scan of the Care Connect NHS twitter feed will reveal absolutely zero of their 51 tweets or RTs being from anyone except someone related to themselves or their pilot sites. That’s 51 tweets in 4 months by the way, and part of the rationale for the pilot is to test multiple mechanisms for engagement! It must be hard to have to field so much confusion and energy (positive and negative) following one press article….and yet Patient Opinion haven’t stopped fielding it, have responded to tweets and have blogged – Care Connect have posted one bland statement and RT’d Tim Kelsey:

Patient Opinion lives and breathes it’s punters. In my experience it’s like a virtual family that all are welcome to join (or not if you’d rather). It’s social, predominantly social. They’ve been on twitter a lot longer admittedly, but 18k tweets ahead of Care Connect NHS and a truly engaged approach suggests that maybe Care Connect NHS should be listening to Patient Opinion and its customers and supporters, rather than talking. Patient Opinion were the first people to truly change the way that feedback for the NHS was collected, and have steadfastly stuck to their values. They’ve been co-productive and patient centred since 2005, way before it became fashionable or the NHS caught up. They have done the ground work, they have systems and customers in place. It baffles me as to why NHS England would seek to replicate or duplicate that for themselves instead of investing in systems that work.

5. They travelled a journey with me

The most important thing that Patient Opinion did went way beyond what any feedback mechanism could or should. I felt like Patient Opinion travelled a journey with me. I felt like I had a conduit for my feedback if I needed it, and an ally for my attempts to improve things. I seriously hope that Tim Kelsey and his colleagues do what they can to learn from Patient Opinion, and do all they can not to undermine them and their sustainability. Life is confusing enough when you’re attempting to navigate the NHS, the work from Patient Opinion over the last eight years to build their brand, profile, model and approach is more valuable than we probably realise, the last thing anyone needs is confusion about how or where to feed back or feed forward. I’m really looking forward to some clarity on this.