I know diabetes, and not much else. I have a few other health conditions that are no more than niggling, requiring minimal effort and engagement with healthcare professional. But they still do need some sort of attention and treatment. The stark difference between that treatment and the treatment for diabetes is that I never have to jump through hoops to get treatment for them. 

The other day, I had to go and have imaging on my elbow because said elbow hurts, the doctor thinks it’s tennis elbow which is now being referred to as latte elbow around here because the last time I picked up a tennis racket, Yannick Noah was ranked in the top 10. 

I went to the GP, told him what was wrong, and he wrote a referral straight away for an ultrasound and Xray and sent me on my way. Three days later, I had the scans done and today I’m waiting for a telehealth appointment to discuss treatment. There was no ‘let’s wait and see’ if it gets worse.

Diabetes seems to be a lot about waiting and seeing. Or use of arbitrary numbers to determine if something can be used. Or bargaining: you may have <x device/treatment>, but you must do <y intervention> first, even if <y intervention> is not want the PWD is remotely interested in. 

When I wanted to start on a pump twenty years ago, I had to go doctor shopping until I could find a doctor who would agree to filling out the requisite forms so my private health insurance would cover the cost of the pump. This was twenty years ago, and while pumps had already been around for a number of years by then, there really weren’t all that many Australians using them, so finding an endo comfortable with the whole thing was not easy.

My first endo told me I hadn’t had diabetes long enough to consider using a pump. Subsequent shopped doctors told me a) my diabetes wasn’t serious enough to warrant a pump, b) my A1c wasn’t high enough to use a pump, and c) my A1c was too low to use a pump. 

It took a while before I found a doctor whose response to my ‘I want to use an insulin pump’ was ‘Sure, where do I sign?’

When CGM came out I’d already found myself the sort of doctor who was more than happy to be guided by what I wanted, because she understood that I knew my diabetes best and therefore was the best person to decide what I wanted in my management arsenal. She’s still my doctor. There’s a reason for that!

Last week, I tweeted this:

Click to go to Twitter to read replies

The replies and discussion that this tweet started are really not a great snapshot of person-led care. In fact, it’s more like example after example of PWD being told no for not especially great reasons. 

It seems that there are two main barriers which are intertwined in some ways. 

The first is that HCPs continue to act as gatekeepers of diabetes technologies, deciding who is allowed to access what particular devices and when that can happen. This is problematic and harks back to a time when people with diabetes were mere patients, gratefully accepting what care was doled out to us without question. 

Some might think that this sort of archaic attitude is no longer around, but a glance through the replies shows that, sadly, that isn’t the case. 

The other barrier seems to be a whole heap of rules that seem to have no purpose other than expecting the person with diabetes meet them before they are deemed worthy of whatever it is they want. 

Some of the rules seems arbitrary, others probably come from a sensible place, but are not what person-centred care is about. Many don’t seem to be based in any kind of evidence at all. Regardless, all they do is promote a one size fits all process that must be met before a PWD can proceed, verifying our merit along the way.  

The very idea that we need to prove ourselves worthy of a diabetes treatment is offensive. We didn’t need to prove ourselves worthy to be diagnosed with diabetes, so why should we need to do so to have access to the technologies that are there to help us manage it? Why should we need to have diabetes for a certain about of time first, or do an education course that is not necessarily directly related to what we are searching for, or reach a certain A1c to earn our right to access and utilise a piece of diabetes tech?

(There is a third barrier unique to US DOC friends, and that is insurance requirements…. I don’t know all that much about insurance in the US, but I guess it is HCPs employed by, or advising the insurance who set up the ridiculous hurdles and hoops people with diabetes are expected to navigate.)

Now, obviously, there is the (not by any means insignificant) issue of cost. I understand that there is never an endless pot of cash to support people with diabetes. But even in places where there is funding available, or cost is to the individual – not the health system – there are still barriers in place. 

Living with diabetes is a constant, tough gig. If we are searching for something to help us through, and we have made the decision that we want to try something new, surely the role of our HCPs is to work with us rather than stand in our way. The holy grail for so many people with diabetes that I speak to is to make diabetes easier. And yet, all these barriers just make it more difficult. That hardly seems fair. 

More on this:

Damned if we do; damned if we don’t

Who’s in charge around here?

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