There's no shortage of metaphors to describe life with Type One diabetes, so no shortage of song titles for my diabetes-related posts. It's all about balance, so let's say this one is all about trying to Ride my Seesaw, and the Moody Blues had a song for that. Click on the above title, for one of those "so uncool it's cool" videos.
I sometimes think it has all been said already about Flash Glucose monitoring, but I hope that this post might just help those working in CCGs around the UK in their deliberations on whether to approve access to FreeStyleLibre sensors on the NHS for people living with Type One Diabetes.
In personal terms, I live in an area where a policy is “under review” and I am cautiously more optimistic of a positive outcome having had the opportunity to put the case to the CCG at a public meeting a few weeks ago.
But in less selfish terms, I was dismayed last week when a good friend of mine from the diabetes community (living in West London) told me that she had been informed by her GP that she would no longer be prescribed FreeStyleLibre sensors, because they are “too expensive”. The woman concerned is herself a Type One who cares for her 5 year old daughter who is also Type One, and she had initially been prescribed sensors for herself and her daughter.
In other areas of the UK, she and her daughter would both be eligible for sensors on the NHS and would be benefiting from more frequent, non-invasive testing, more detailed information about the direction of travel of blood sugar levels and graphical data enabling her better to manage her and her child's sugar levels, thereby reducing the risk of serious and costly complications in the future. And equally importantly in my view, doing so with less mental and emotional strain. All at a cost to the NHS which is very modest compared to that used for many commonly prescribed drugs and treatments for other medical conditions.
So why does this matter? Are we being treated unfairly or are we, as a BBC journalist who interviewed me recently put it “just after the latest gizmo”?
Well, I have been a self-funding FreeStyleLibre user for over three years, and this past week, a little bit of Libre-assisted self-management on my part brought the issue into focus for me, making me realise how hugely beneficial even this relatively unsophisticated piece of kit can be. It enables us to keep blood sugar levels close to the desirable range and more importantly to prevent longer term average levels from creeping upwards, causing the sort of insidious damage which can and does lead to serious complications.
Let me explain: I had a very busy two months in May and June, returning to my former place of work for a stint as an exam invigilator along with a number of one-off events including a five day visit to France leading a twin town delegation (driving there and back) and a two day filming assignment in London for a forthcoming appearance on BBC TV's “Pointless”. During this time, I must confess that my diabetes management reverted somewhat to the strategy that I used throughout most of the first sixteen years of living with the condition: I allowed my BG levels to err on the high side, aware that this would minimise the risk of inconvenient, embarrassing or even dangerous hypos.
This is a perfectly reasonable strategy given that I was appearing in a primetime TV quiz show, driving a 1000 mile round trip and invigilating public examinations at various times, but it is frightening how quickly a bit of neglect of tight control pushes averages up. Without FreestyleLibre and its detailed feedback, the upwards creep of averages would probably have gone unnoticed until an HbA1c result at a clinic review. And of course subtle damage is already under way whenever blood sugars are out of range for any length of time.
But for those like me who can use it wisely without becoming over-obsessed with every twist and turn of blood sugar, the FreestyleLibre is an invaluable source of information, a sort of Dia-Jiminy Cricket who can act as a conscience if things are going astray. A week or so ago, I looked at my average BG and noted that it had crept up to 8.9, having typically been around 7 since I started on FreeStyle Libre 3 years ago.
So last week, which was significantly less busy than the previous few, I resolved to improve things. I decided just to keep a closer eye on things, to check levels a little more frequently and to react to them with correction bolus doses or snacks. Nothing clever, no elaborate calculations: just a common-sense response to some easily interpreted data presented on my phone screen.
And guess what, in just one week, things got better. Look at these screen shots, firstly this one showing the 90 day average, with the tell-tale orange bars reflecting those higher-than-desirable levels of recent busy weeks:
And secondly this one showing the results of my week of more intensive checking and reacting, with the green bars showing a significant improvement and the average at 6.7, down from 8.4:
Could this have been achieved with conventional finger prick testing? Theoretically yes, but in practice no. The ease of frequent testing, the instantly available average data, the trend arrow to enable safe and effective reactions to impending highs and lows are just not possible without a FreetyleLibre. And yes, the inner child who is never far from the surface in this 60-year-old me, rather enjoys the reward of seeing those green bars, like getting merit stickers from a teacher. I'm easily pleased and amused.
But perhaps most significantly, it’s the fact that it helps me to self-manage my short and long-term well-being. And if it’s cost that is causing some CCGs to either refuse to prescribe, or to impose ridiculously narrow criteria, then they should perhaps consider that helping and encouraging people with Type One diabetes to self-manage their condition with the help of a relatively cheap piece of technology is a very sound cost-saving investment.