Are networked citizens impacting on health/care services and culture?

We're grateful to George Julian for this guest blog post, in the week we celebrate our 10th birthday.

Patient Opinion is 10 years old. Wow, a decade, double digits, how time flies. I’m very disappointed I won’t be there for the celebration event and gutted to miss out on the birthday cake.

I first came across Patient Opinion back in 2009. Having joined Twitter in late 2008, I was starting to build a personal network of people interested in health and social care when I came across PO. I’ve written before about Patient Opinion – Partners not pen pushers. That post ends:

“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”.

In 2008 when I first stumbled onto social media it felt like a very different space. Twitter was only a couple of years old itself and people were still finding their social media feet. I don’t remember people being as certain as they are, or bickering with others so much as discussing things and wanting to understand other perspectives. Blogs were a way to discuss and debate, to learn and think, not just to promote oneself. Before NHS organisations and staff realised they ‘should’ be on social media; it was a special time.

In that space Patient Opinion shone, as a sensible, practical use of the web and the opportunities it provided, to enable patients to provide feedback to help learn, reflect or improve things.

PO role modeled transparency rarely seen (still not seen) elsewhere within health systems and they supported patients and carers to realise their feedback had value. In those early days PO hosted a number of unconferences to bridge the online and offline worlds, offering those attending the chance to set the agenda, while sorting the logistics and crowdsourcing the food.

I’m going to discuss where we have come since then in relation to Patient Opinion and JusticeforLB.

Patient Opinion

I think PO has gone from strength to strength, those using their service have increased and there are a number of examples of people using feedback to actually make a change. There is a lot of positive.

There are some stock responses that must defeat the object of collecting patient feedback, even examples where a very small change could fix something e.g:

Feedback: Shows where the Linen and Sewing room is but not the Fracture Clinic entrance!!!

Response: Thank you for taking the time to comment. It is always good to receive feedback; we try to ensure we share examples of good practice and also that we learn from any negative experiences or suggestions.

Additionally, there are hundreds of entries in the PO database where there is no response or no-one listening and thousands where the response is ‘thank you for contacting us, we’d love to speak to you about your experience, please call…’

Not listening is a wasted opportunity. Non-responses are more infuriating due to the waste, but also because they so clearly evidence an inability to listen and care to patients. They are micro indicators of carelessness and a system so wedded to its own process that it misses what’s in front of its eyes, someone already speaking, the system just needs to learn to listen. That, or non-responses are due to an abject fear of online communications and the transparency it affords.

JusticeforLB

Over the last 18months a campaign to get #JusticeforLB has formed on- and offline. LB, Laughing Boy, was the nickname of Connor Sparrowhawk, a young man who should have been celebrating his 21st birthday this week. LB died in July 2013, drowning following an epileptic seizure while in the bath, as a result of neglect at Southern Health NHS Trust. You can read the full jury findings from LB’s inquest.

The campaign has blended the online using websites, blogs, twitter, facebook, group chats, video and animation, with offline such as a Justice Quilt, parties, fundraisers, lectures, book dedications, craftivism and good old-fashioned trips to the pub. We are an eclectic collective of disabled people, family members, carers, advocates, health and care professionals, academics and many others not so easy to label.

The mission is twofold: to secure some sort of justice and accountability for what happened to LB, and to improve the ridiculously low status of care and life opportunities for learning disabled people in the UK.

We have definitely networked a disparate group of people together and we have been told that we are having an impact and making a difference. We have had great support from other networks such as the We Nurses Learning Disability Community @WeLDNurses and from those working in education, academia, health and care. Some of the campaign ideas in the #LBBill featured in the most recent learning disability Green Paper and in the Law Commission consultation on Mental Capacity and Deprivation of Liberty.

For now, despite all the government promises, the number of people incarcerated in Assessment and Treatment Units remains steadfast. Whether any of these campaign efforts will translate into real change, in practice or culture, only time will tell.

Conclusion

I look forward to the day when the pendulum swings and stops at feedback being valued, welcomed and gathered however it suits the citizen, not in the way that makes it easiest for the system to manage their reputation. I think we’ve a long way to go to get there.

Influencing change is not easy, wherever you fit within the ecosystem. In many ways the challenge now is as great as it was ten years ago when Patient Opinion started and some groups remain woefully under-represented online, including learning disabled people.

It is no doubt a truism that we all need to work together to improve things. The beauty of networks is that they allow that to happen, on and offline. I wish Patient Opinion well for the next decade and I hope when it's 20th birthday arrives we look back wistfully at what a long time it took to build momentum, but how far we’ve since come. Together.