Friday 24 January 2020

Miss you like Crazy: Come back Libre!

Some say “familiarity breeds contempt” whilst others say “absence makes the heart grow fonder”: most proverbs have a converse version, and we all choose the one that best suits our argument or the moment.

This isn’t, however, a post about relationships.

It’s about diabetes technology, specifically the problem that has compelled me and many others like me to live without our life-changing FreeStyleLibre blood glucose monitors in recent days, because of supply chain problems in NHS prescription supplies to pharmacies here in the UK. I am missing my Libre sensors, and their absence has certainly made my heart grow fonder for them.

What’s the problem? Well, if you live with diabetes and use social media, you’ll know that since Christmas there’s been a significant problem with the supply of sensors, the prescribed and disposable element of a system which has in recent years revolutionised the way in which people with Type 1 Diabetes monitor the all-important levels of sugar in their blood. 

Much has been written about this device, and a campaign in the past two years led by an alliance of patients, doctors and diabetes charities succeeded in making it available to eligible patients on the NHS; many had previously been funding their own sensors at a cost of approximately £100 per month.

In case you don’t know, FreeStyle Libre is a device which enables us to see at a glance the level of glucose in our blood, thanks to a tiny filament which sits under the skin, constantly measuring interstitial fluid, which reflects closely the level of glucose in the blood. The two main advantages are that the device involves no invasive pricking of the fingers to draw blood, and perhaps most significantly, that it enables the user to see a “trend arrow” indicating whether the level of glucose is rising or falling. This is essential and potentially life-saving information.

Like many people living with Type 1 Diabetes, I had quickly become used to this device, having self-funded for 4 years then secured eligibility for prescription in April of last year. I wrote about it more than once on my blog, and played a small part in the campaign to get NHS approval for prescription of sensors, extolling its virtues on TV, radio, in parliament and to local healthcare providers. I was determined to do my bit to ensure that access to this in many ways quite simple piece of technology was available to the widest number of possible beneficiaries, and the progress made over 2019 was remarkable, thanks in particular to the efforts of Partha Kar as a professional and Nick Cahm as a tenacious amateur

So by the end of 2019, all seemed well, and many of us had become used to collecting our little yellow boxes of sensors from the pharmacy, along with our needles, insulin and other diabetes supplies.

Then suddenly, it all went wrong! Soon after Christmas, reports of severe delays and then non-availability came flooding in on social media, and I am fairly typical of the current situation as of Jan 24th 2020: I ordered new sensors (we are allowed two at a time, one month’s supply) on January 5th, and I’m still waiting, after 3 weeks.

Now in the grand scheme of things, it’s no hardship, and certainly not worth some of the anger and vitriol that has been apparent on social media. But then again, people feel the need to spill anger and vitriol about lots of things these days.

Of course it’s no big deal, and certainly not a matter of life and death. Before I or anyone else starts feeling too sorry for themselves, we should all take a moment to reflect on the good fortune that we enjoy in living under the care of the NHS, as opposed to in the USA, where even insulin costs are obscenely high, or in some countries where insulin is unavailable for some. A good moment to plug the charity Life For a Child and their "Spare a Rose" campaign - please donate if you can.

However, having said that, going without a luxury makes one very aware of how quickly a luxury becomes a necessity. Have you tried being without a mobile phone for a day or two? Or having to hand wash the dishes when your dishwasher breaks down? Or you clothes when the washing machine packs up?

FreeStyle Libre is much the same: my few days without a working sensor have reminded me that merely knowing the level of my blood sugar is a very inadequate substitute for knowing its direction of travel. And that trying to do a finger prick test at 2am when half asleep is difficult. Or that doing a finger prick test at any time is painful, messy and inconvenient.

But above all, that testing only a handful of times daily is hopelessly inadequate. The NHS criteria state that Libre should be available for anyone "needing" to test more than 8 times daily. 8 now seems totally inadequate, and I have badly missed the ability casually to check at any moment of the day or night. I fail to see how anyone with T1D can feel really confident if their last test was several hours ago.

And yet for 18 years, that was how I lived, and not that many years previously - as Peter Davies has so effectively reminded us - all you had was a urine test strip which told you *roughly* what your BG was several hours ago.

So my time without Libre has served to renew my conviction that where Type 1 Diabetes is concerned, the ability easily to know what’s going on with one’s blood sugar, and to learn from and react effectively and flexibly to that information, is the key to living well. I hope that once the current supply issues are ironed out, we will soon see Libre (or other similar low-cost monitoring systems) available to many more who would benefit. And surely that means the overwhelming majority of people with Type 1, and for that matter Type 2.

Meanwhile, dear Libre, I Miss you like Crazy.

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