Whose Diabetes is it anyway?

Whose Diabetes is it anyway?
Whose Diabetes is it anyway?

Following a manic weekend of tweeting and a number of discussions brought on as a result of my clinic appointment on Friday, a couple of questions have raised their heads relating to Diabetes care, and the one I think needs most focus is, “Whose diabetes is it anyway?”.

We’ve seen a number of groups looking at how T1 care could be improved, with the TalkT1 session a couple of weeks back, and we continually hear about the idea of “Patient-centric” care. And this is where the question comes in.

The anecdotal feedback from my appointment was that the registrar was quite surprised that I had identified issues and patterns and made changes to deal with them. If you hadn’t worked out from reading my blog, I own my diabetes and I’m very happy with this arrangement. It’s mine. I make the decisions and I feel comfortable in doing so. i often refer to it as “My Diabetes Science Experiment”. This can’t be said for everyone.

I’m sure there are a number of factors affecting this.

Firstly, there’s personality and timing. It’s often easier to stick your head in the sand and ignore it, delegating responsibility to someone that “knows more about diabetes than I do”. Simply handing data over to the healthcare professional and letting them take control and tell you what you need to do. That way, you don’t have to learn, and if things go wrong, well, it’s not your fault is it? The DSN/GP/Consultant didn’t tell you the right things to do. And early in diagnosis, this is also easy to do, with the tsunami of emotion and information washing over you.

Well I guess that’s an approach, but when you consider that you spend all your time living with it, seeing the ins and outs and feeling the results, how can you complain when the changes suggested don’t work? And given some of the nasty things that can happen to you, why would you take such a big risk?

Equally, wanting to treat yourself as an ongoing experiment isn’t always something that sits comfortably with everyone.

Is it perhaps because of the way you have been educated and interacted with Diabetes Care specialists?

A damning statistic is that of the 300,000 Type 1 diabetics in the UK, more than two thirds of us have not attended structured education. I’ll put my hand up and say I’m one of those, although I’ve undertaken the BDEC course on-line. Structured education does give you a set of tools that helps you to take responsibility for your own condition and empowers you to do it yourself.

But at the heart of this there is also the healthcare system. Many, but absolutely not all, of the interactions with diabetes HCPs come back to the paternalistic, autocratic approach whereby you are expected to turn up with data and be told what you are and are not doing right and potentially how to fix it. This is not a method by which people are empowered to take control. They are told to test, as the DSN/Consultant wants to see the numbers, but without the addition of why, and without the why, it seems like a pointless exercise.

Within this approach, I fear, is also the consideration that an HCP loses power as they lose control. Whilst empowering a person to own their own Diabetes has to be the way that it can best be managed for most, there are still HCPs who find this to be an uncomfortable truth. I know of cases where consultants have written letters to GPs stating that suitability for pumps was questionable due to the patient not wishing to have NHS staff controlling their diabetes for them! Hello? In which world do these people live? I suspect that this attitude is more pervasive than I want to believe.

I believe this is reflected in the outcomes of the National Diabetes Audits (at least up until 2013). The results for 2013-2015 are due out on Thursday, and I await them with great interest. I hope that the metrics have improved, but I do question whether there will be a difference.

But coming back to the original point of the post. Whose diabetes is it anyway? Well, it’s mine, and each and every T1’s. We own it. We manage it. It does not and should not control us, and it certainly isn’t our HCP’s, whatever they might like to think.

So what can we do about it? There’s plenty. you don’t need to ask permission. You can simply take it on yourself. Go and see you HCP and ask for education. Get them to explain why they are doing things so you can understand what is going on. Join the Diabetes.co.uk forum, join in on the many groups on Facebook and participate in the online community on Twitter, under #gbdoc and #ourD.

While it may seem scary at first, it’s yours, for life, and the sooner you get a handle on that, the sooner your life is your own and you make decisions with your diabetes, and not because of your diabetes.

As Professor Simon Heller said, “No condition demands more of the individual than Type 1 Diabetes”.

It accompanies us everywhere and we own it. So let’s all get out there and do that, living our lives and not being afraid of what we live it with. In the western world we have access to insulin and care, so we should consider ourselves fortunate that we have the ability to take control.

So whose diabetes is it anyway? It’s ours. And we shouldn’t allow anyone or anything to make us think otherwise.

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