My brave, bionic boy

At our first visit to the GP, post diagnosis of type one diabetes, to get our repeat prescription confirmed, the GP told my newly diagnosed 8 year old that:

  1. The test strips we were prescribed in hospital were too expensive and he had to use cheaper ones;
  2. He shouldn’t be testing more than a couple of times a day anyway; and
  3. His fingers would turn to mush.

The first two points were clinically incorrect to the point of being life threatening.  But I will concede the third one.

So today was a huge day in our house.  My brave boy has become semi bionic with a Libre sensor in his arm. This enables him to swipe a reader over his arm to find out his blood glucose level, saving some of the 12 blood finger prick tests he does daily.  More importantly for us, it may allow him to sleep through his 11 pm and 3 am blood tests as the swiping is painless, giving him the first full night’s sleep he has had since diagnosis nearly six months ago.

IMG_0036
Sensor with camo rock tape!

The Libre isn’t available on the NHS, so we’ve funded it ourselves.  The reader at just over £100 is reasonable.  The sensors, which last us to two weeks, are around £55, so a minimum cost of £110 a month.  To allow an exhausted child to sleep, that’s worth it to us.  Last Monday, watching him hacking at his calloused fingers desperately trying to draw blood for 20 minutes after a freezing rugby match cut the circulation to his capillaries, I looked forward to this moment.

It’s our fourth go at inserting the sensor: the first three were faulty.  Despite drawing blood from his fingers so often, and injecting himself five or more times a day without fuss, sensor insertion was terrifying for my son, recalling the cannula insertion at diagnosis. Delays in replacements have allowed our anxiety to build for a month.  Unable to believe the failure rate, I started to doubt myself and my ability to follow the process properly. Never have I felt so alone. Because the NHS doesn’t fund the sensors, there is no medical support.  Neither my son nor I are quitters (we have the “dog with bone” gene), but we would have given up if my plea for help on the internet hadn’t been answered by a very kind Libre-using soul who sat with us through this fourth attempt.

The JDRF estimates that 99 per cent of diabetes care is self management.  We currently have one fifteen minute appointment every three months – a paltry 0.01 per cent of time we live with Type One.  We also have telephone or text contact with our specialist nurse every month or so, when I get really, really stuck. He is amazing, but his time is incredibly precious as he deals with the newly diagnosed and trains schools as well as supporting the 200 plus children with diabetes in our area.  We choose responsibly our calls on it.

This sensor, if it works, will save the NHS money, not only in test strips (I’m expecting a thank you card from that GP).  Because it provides better data it should help with the ongoing battle of blood sugar management, potentially reducing or delaying complications that contribute to the big, fat NHS diabetes bill you may have read about.

But for us, today, we’re not thinking about the money we’ve paid out or the costs we’ve saved the NHS.  We’re thinking about the kindness of relative strangers who pick up the pieces when no other help is available.  And most of all:

we’re imagining the dreams of a little boy who sleeps for the first time in half a year.

 

 

Please sign this petition https://you.38degrees.org.uk/petitions/freestyle-libre-on-the-nhs if you support cost-neutral improved care for people with diabetes.

 

 

7 thoughts on “My brave, bionic boy

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  1. Its pathetic that we are made to feel guilty for using the supplies that keep us alive. In Australia, the government subsidises the equivalent of 4-5 test strips a day. Thanks for writing about the Libre. I’ve heard of it, but haven’t seen too much written about it.

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    1. Thanks Frank. That’s a ridiculous small number when you are administering insulin at least 4 times a day, driving a car, engaging in exercise, going to sleep – all those little luxuries!! Lots of people are excited about the Libre here although there have been massive supply issues. We went on a waiting list with Abbott in August I think and received our first (dodgy) sensors just before Christmas.

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  2. It really is a lottery as to where you live, in 18 years of ordering for my son, I can change meters, operate different meters therefore requesting different makes of strips at one time,my son tests at least 6 times a day, and I was only questioned once, a letter in response regarding the necessity to test regularly etc and no more was said. I was told many years ago by Diabetes UK – put everything in writing.

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