Sunday, 12 April 2015

"It's not Fair"

This post takes as its title a phrase I instinctively dislike and use very sparingly: "It's not fair". It's a great song title (thank you Lily Allen), but apart from that a rather futile protest.

Very little in life is fair - as a teacher, I slap down complaints that something isn't fair with a riposte stolen from one of my own teachers years ago: "if life were fair, I'd be good looking!" That always takes the wind out of pupils' sails, and in any case as a teacher, I have always tried very hard to be fair. Apologies if you are an ex-pupil reading this and you disagree.

However, diabetes - especially Type One - isn't fair. It strikes randomly, and once the fickle finger of fate has chosen you, it is unrelenting. It never gets "better" or "worse" - it is just a question of how successful the unfortunate victim is at dealing with it. And that success or lack of it is very often beyond your control - especially, I feel,  for children, adolescents and women, for whom other unavoidable things like growing and hormones take an unwelcome delight in interfering with management of diabetes.

I don't get down about my diabetes. I am lucky that I lived 40 years without it, and have lived the subsequent 17 years in pretty good shape, all things considered, still able to live a full and active life, doing all that I want to do, within reason.

However, I did have an "it's not fair" moment this week, when on the same day, I ordered a new set of Freesyle Libre sensors (cost £101.52 inc postage - precisely 4 weeks supply) - and a repeat prescription for all my usual diabetes stuff (insulin, needles etc). I realised as I ordered the prescription that I had used virtually no test strips since I started using the Libre. I didn't need any tests strips, so an item worth just under £60 was not on my prescription: I was, in effect, saving the NHS that amount because I am spending £100 a month on a Libre.

I have started using the Libre at the same time as several fellow T1's from the GBDOC community, and I think I speak for all users of it, and indeed those who are using more expensive CGM, that the amount of information we get about our blood glucose levels is light years ahead of the "snapshot" provided by a one-off test. I don't yet feel that it has actually improved my health, but I am very sure that it is helping me better to understand the subtleties and infuriating  complexities of the relationship between food, exercise and insulin. And in so doing, I will inevitably get better at avoiding the lows, and especially the highs, which are such a threat to my long-term wellbeing. This will save the NHS money in the end.

On the right is a recent reading, showing a pretty good overnight (sorry to be smug). Taken after breakfast, it also illustrates wonderfully how injected insulin deals with what has been eaten at breakfast, and how the libre warns me that I need to be aware of a fast-falling blood glucose level and take in some more carbs before the day is much older.

So I hope that perhaps those who make decisions about what is and isn't available on prescription will give serious consideration to making the Libre - at least the sensors - a prescription item. Yes, I know the NHS is hard-pressed, but I am pretty sure that a well-observed response to Libre readings would quickly pay for itself.

Meanwhile, I will continue to generously save the NHS £60 a month by hardly using any test strips, and will spend £100 a month of my own money so that I can continue to monitor my own blood glucose better than any doctor or nurse is able to. I'm not convinced that's very fair.....

Please share this blog post if you agree.




2 comments:

  1. Hi Adrian. I recently stumbled upon your blog while browsing for pages related to the Freestyle Libre. I recently started using the Libre myself and now that I have some first-hand experience with it, I wanted to see how other people get on.

    Unlike you, I don’t intend to use the Libre as my main meter – at least, not yet. For the time being I’m sticking with my Accu-Chek Advantage Expert which is a superb meter if you make use of the data recording and bolus advising capabilities (which I do). My plan for the Libre is to use it for a couple of weeks every 1-2 months to get an idea of my overnight levels, and perhaps for special occasions such as going on holiday, where activity levels and food intake are unusual and extra monitoring is useful – especially if it’s unobtrusive.

    An observation I have made is that the Libre tends to read 1 mmol/L lower than my Accu-Chek meter. I wondered which one was more accurate so I dug out a OneTouch Verio which I had lying around (my thought was that a different manufacturer, different strips, and different software will make for a good comparison). It turns out that the OneTouch and the Accu-Chek were within 0.2-0.4 mmol/L of each other which leads me to think that it’s certainly the Libre that’s the ugly duckling (or the Cindarella, depending on your point of view). I wondered, what is your experience in this regard? Do I have a dodgy sensor? Even though there’s a 1 mmol/L gap, I find that the trend information is still incredibly useful – more useful than the point in time reading, to be honest.

    On the subject of “It’s not fair”, I’m sure you’re aware already, but if not, take a look at this petition to get the Libre on the NHS: https://you.38degrees.org.uk/petitions/freestyle-libre-on-the-nhs

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    Replies
    1. Hi Damian,

      Thanks for your comment. Lots of people look at blogs, but few comment, so it's good to get feedback.

      I agree that the Libre reads differently from a meter, and yes, usually a bit lower, which is no bad thing in that it is giving more "advanced warning" of hypo risk.

      However, for me, the real bonuses are the trend arrow (invaluable) and above all the frequency of testing. I've gone from 2-3 times a day to 15-20, and I do far more fine tuning with insulin correction doses.

      I am awaiting my next HbA1c with interest..

      Thanks again for your comments.

      Adrian


      PS I have signed the petition!

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Patience.....or patients?

It's an old joke, based like many on the rich supply of homophones in the English language: “You need patience to be a doctor” 😂😂...