Bursting the bubble – by Andy Broomhead
A couple of weekends ago I volunteered at one of the Diabetes UK ‘Big Conversation’ events in Leeds. The discussions I was part of had a lot of key themes; access to consistent and quality care, desire for more education and support (for individuals and healthcare professionals alike) and the ongoing stigma associated with diabetes.
Two things struck me in particular. Firstly that everyone there had a desire to be engaged with their care – some people had travelled miles to come and give up their Saturday to talk about their experiences with diabetes. The second thing was a little more sobering – for all that desire, there were a few who had never been given the fundamental basics to be able to confidently self manage their diabetes.
Living in a bubble
I’ll be the first to admit that I live in a bit of a bubble when it comes to good practice and diabetes management – social media quickly has that effect on you. That said, I’m almost 15 years into this journey and I’ve probably only had a decent handle on it for about four years. I wrote previously about the idea that the gap between those engaged and those disengaged is at risk of widening as we further develop technology and new approaches and innovation in diabetes management. But what about those who want to be engaged but don’t know how?
I spoke to two or three people who knew what HbA1c was (but weren’t actually sure of the abbreviation). I spoke to people who knew they had that test, but never got their result, and I spoke to people who knew the test, knew their result, but had no context to understand whether it was ‘good’ or ‘bad’ (their words not mine).
So what does this all mean? For me, it says that there are probably a lot of people desperate to know more about their condition but don’t get told enough early on in their diagnosis to understand, or that people don’t have enough confidence to be able to question those providing them their healthcare.
This latter point came up in discussion too. The idea that people probably felt more confident to challenge a nurse, dietician or physio than a doctor was mentioned a few times.
Do we do enough?
I’d like to think in terms of being clear about what care people should be getting, we do a pretty good job of that at Diabetes UK with the 15 Healthcare Essentials. Do we reach enough people with that campaign message? I don’t know for sure, but with 4.5 million people with diabetes in the UK, I suspect there will always be more people to reach.
So how do we do more to give people the confidence to have a direct conversation with their healthcare professionals? Do we need to do more to turn knowledge into action? Turn those passive healthcare recipients into an army of active ones?
For many of us the very notion of even needing to think about this is alien. Of course we should know what our HbA1c result is, how it compares to last time and what we can do to try and make any changes to it for the next time we have it checked. But our Twitter bubble isn’t representative of the wider UK diabetes population. The few thousand of us talking about our diabetes in our virtual community is brilliant (and has made a huge difference to our self care), but simply doesn’t reflect the real world experience of the millions with diabetes.
For many, it seems the desire to know more about their diabetes is outweighed by the lack of confidence or knowledge in how to know more.
The answer isn’t an easy one and whilst a broad brush approach may help a lot of people, the complexity around engaging different communities up and down the UK persists. As I wrote previously, I think the responsibility lies with all of us to do what we can when we can.
There’s definitely hope though
I’ll finish on a positive – a microcosm of what we all can do. On Saturday someone talked about how their GP practice isn’t great at dispensing prescriptions or any context in terms of diabetes test results. A few members of our table started talking about switching GP, signposting to hospital diabetes services in this person’s area and giving them the kind of questions they needed to ask. I don’t know whether that person went away and acted on all those notes this week, but I really hope they did.