Posted by on Thursday, 31 December 2015

Backwards, forwards and off at a tangent

Looking back
Well that's it 2015 - you've pretty much had your lot.

So this is the seemingly inevitable 'round up' type post and also a chance to *finally* get around to writing a post that I had wanted to publish in the weeks before Christmas concerning the latest tomfoolery that my diabetes has decided to subject me to.

In January this year I had my first glimpse of the MiniMed 640G at a Medtronic bloggers and advocates meeting. There was quite a lot more of this particular gizmo later in the year.

February saw me clocking up 25 years of living with type 1 diabetes. More by luck than judgement I still seem to have most body parts in relative working order and nothing to speak of has apparently shrivelled up and dropped off so far.

In March, was honoured to be invited to join a small group of bloggers and advocates at the Diabetes UK Professional Conference in London, spreading news of new research and information via Twitter and Facebook as the conference progressed.

One of the most dramatic changes I have made in my diabetes therapy in years occurred in April when Fruit Pastilles and I abruptly parted company.

Over the summer I had the opportunity of living with the MiniMed 640G with full-time sensor coverage for 9 or 10 weeks and posted my very first video blogs documenting my experience. It was the first time I trialled sensor-augmented pump therapy and the results - for me - were quite simply remarkable.

August saw the publication of new NICE guidelines for Type 1 Diabetes in Adults after years of work. It is something I am very proud to have been involved in as a member of the Guideline Development Group. It would be wonderful to think that the document might make a positive difference in some small way to at least one person living with type 1 in the UK.

In November, I chose to upgrade to the MM640G when my pump warranty ran out, though that decision is tinged with sadness as (not unexpectedly) my clinic were less than optimistic about my chances of securing NHS funding for sensor coverage any time soon.

December saw an invite to speak at the Royal College of Physicians in Edinburgh at their St Andrew's Day Symposium. An amazing experience and I was humbled to be invited. Even more encouraging were the invites that I have subsequently received to speak elsewhere. Looks like 2016 could be really exciting. I'll let you know if and when any of them happen.

Looking forward
It will be interesting to see what else the New Year has in store. I would dearly love to be invited to DPC16, but will have to see whether Diabetes UK would like me to be there. I feel very lucky to continue to be part bloggers and advocates groups for both Medtronic and Abbott and look forward to seeing what snazzy new gadgets they have in store over the next 12 months.

I find myself wondering whether I will be able to self-fund sensors for my new pump for a small part of the year (something I never quite managed on the Veo). I have been using Libre sensors intermittently through 2015 and they have been incredibly helpful - but my experience of living with SmartGuard was really something else. It seemed to be the missing part of the puzzle for me. If the transmitter cost was lower, or transmitter life-expectancy was higher it would be a no-brainer. We shall see.

Expect the unexpected
It seems like my diabetes has decided to go off at a bit of a tangent recently. It will be interesting to see if my new 'surprises' continue to occur during 2016.

About two or three months ago I started noticing something rather odd. Since 2010 I have spent quite a lot of time trying to get to know my diabetes rather better. I had always thought we were reasonably well acquainted, but looking back there were many things that I simply did not realise were happening, or put down to 'diabetes randomness'. To be fair, there are still quite a few of these, but a lot less than there once were. When my basal is set right generlly my corrections and doses can be expected to behave (with an odd wobble here or there) when faced with a number of tried and tested meal scenarios. So when everything seems to be pottering along OK one day and then goes haywire with identical breakfast and lunch choices the following day my brows knit and I begin to wonder what's up.

And I have noticed some rather odd coincidences. Well... odd in some ways, but actually quite expected from others' point of view.

All the while over the years I have been relearning my diabetes and asking questions of others, I discovered a variety of 'things' which seemed pretty common experiences for people living with type 1 diabetes that simply did not seem to happen for me, even when I looked carefully for them. Things like exercise or alcohol having an blood-glucose-lowering effect the day after the event. There are a bunch of other things too. These were things I saw being discussed on forums and social media and was always able to say, "Oh that's interesting... I don't get that at all". Except now I do. At least some times.

The exercise and alcohol ones particularly stand out to me, because they involve every T1D's second-favourite game - the ole "What shall I do now?" bedtime conundrum. Which is double the fun if you seem to have spotted a pattern. But one that only applies some of the time - Ah Diabetes! You sly old minx.

So last night, for example, I went to bed at 8.6mmol/L with 1.3u of insulin on board which *should* have been dealing with carbs I had eaten mid-late-evening. Unsure if I had the count right I had another 5 grams or so to err on the side of caution. Except that we had been out at a family event earlier in the day and I'd had rather more booze than I would normally. Not silly amounts, but *possibly* worth factoring in when living in these new 'will it..? won't it..?' times. So I also set an 80% TBR to run for 8 hours. I was fortunate to be wearing a Libre sensor for the last of its fourteen days, so I had a chance for a quick peek at 2.45am whereupon I discovered than unlike earlier over the festive break I had *not* dipped at all post-alcohol - but had risen pretty steadily into the 10s. I added another 0.8u and cancelled the TBR waking at 7.5mmol/L.

So why had I taken precautions that pushed me into double figures? Why choose 80% for the TBR? Because over the last quarter of the year I have had multiple occasions when that has been exactly the right thing to do, not only overnight, but also through to lunchtime the next day. In fact this was the situation fairly reliably when I first decided to write this post (early Autumn). It's only in more recent weeks that the edges have begun to blur again, and I am now left with uncertainty rather than An Actual Plan.

And I've had occasions over recent months where post-exercise dips a day after the event have needed exactly the same careful handling. And others, more recently, where seemingly similar exertions have needed nothing of the sort.

Not helpful.

It seems as with many things in life, the best approach to living with with type 1 diabetes can be found within the hallowed pages of Douglas Adams' trilogy in five parts:

The nearest approach the Guide makes to this matter is on page seven-thousand-and-twenty-three, which includes the words "expect the unexpected”. This advice has annoyed many Hitch-Hikers in that it is ‘A’ - glib, and ‘B’ - a contradiction in terms. In fact, the very best advice it has to offer in these situations is to be found on the cover. Where it says, in those now notoriously large and famously friendly letters, “Don’t Panic”.

The Hitch-hiker's Guide to the Galaxy (part 10), Douglas Adams

Posted by on Friday, 11 December 2015

Collecting third pancreas object (C-3PO)

On Monday this week I popped in to see the lovely LJ the DSN at my Pump Clinic to collect my new pump. We had a nice chat and ran through the set up procedure before I pottered back with a little smile on my face.

You may remember that I posted about collecting my first insulin pump on 1st November 2011. Mostly for my own amusement, I began referring to my little robot counterpart as Artoo almost immediately (R2-P2 - replacement to pancreas #2, with MDI having been replacement to pancreas #1). Insulin pumps generally have a warranty period of 4 years, and my hospital were happy to replace my old pump fairly soon after that period had passed.

I could have chosen pretty much any of the currently available insulin pumps I think, and I have been tempted by the Animas Vibe for some time, though of course, that pump is now getting rather long in the tooth. Animas are well down the road of developing their next pump, but their new offering is not supposed to launch until perhaps 2017. I'm not sure exactly what the new Animas pump will bring to the table, though some sort of insulin-adjusting CGM integration seems to be rumoured. For the Vibe though, despite the attractions of the Dexcom tie-in I was wary of some irritating details of the bolus wizard on the Vibe and was very mindful of the absence of SmartGuard and potential alarm fatigue should funds permit some CGM usage for me.

Medtronic have timelined their new 'hybrid closed loop' MM670G for a similar period, perhaps 2017-2018 (which apparently will have a souped-up version of SmartGuard that aims to counteract highs as well as lows). In the end though, given my very positive experience of the MM640G, I decided to opt for that one. After all, those tantalising shiny, new, possibilities may not actually launch until more than half way through my next pump contract.

Given the almost stifling saturation of hype surrounding the UK launch of the new Star Wars film in 7 days time, I have not been able to resist revisiting that old joke again and so 'threepio' has become my new droid companion. Apparently he has a protocol for dodging hypos as well as communicating with moisture vaporators, but unless I have an unexpected windfall of 'galactic credits', sadly that particular function will remain little more than a futuristic fairytale.

In other, and slightly related news. I have already changed the Threepio's setup so that the homescreen displays as if I were using sensors. Partly this is because I prefer the look of the graph on it (even if the graph has almost no information to display) because of the irritating enormity of the '-.-- we have no fingerstick BG information to show you' dashed line. But also because that way I can use the graph data to track down the timing of my most recent bolus. Either as a visual ready-reckoner with the blue dot beneath the otherwise empty graph, or by drilling in to the graph view and scrolling back to see the exact time. Gathering the information this way takes only five clicks from 'standby' whereas getting the same information in the normal way from the 'status bar' takes seven.

Little things and all that.

Posted by on Thursday, 3 December 2015

Edinburgh, encouragement and a call to arms

This week I have been lucky enough to be invited to speak at the 55th St Andrew's Day Symposium, hosted by the Royal College of Physicians in Edinburgh. I was given the topic of 'apps and technology' in relation to managing a long-term condition like diabetes, but obviously - not content with that - I managed to sprinkle in a wafer-thin analogy of what living with type 1 is like, along with all sorts of stuff about the #doc and the transformative potential of online peer support communities.

I tried to cover the infuriatingly fickle nature of type 1 diabetes, mentioned a few 'old favourites' like mySugr and the Accu-Chek Expert which have helped me attempt to tame my own 'diabetes monster' and also just a few of the many other things that I know help others in different ways. Gathering data and then learning to be able to apply it to make small improvements. Not forgetting, of course, the support you can get from those facing the same battles every day, whether in terms of just keeping going when it all falls to pieces (again!), or in people sharing experiences and strategies that work for them that you can consider for your own self-management.



It seemed to go relatively well, and people were very encouraging - but the absolute stand-out for me about the whole experience were the conversations I had with some passionate diabetologists after the session had ended. I had deliberately avoided focussing too much attention on the more obvious technological advances like pumps and CGM, as I had wanted the talk to have as wide a reach as possible, and also perhaps fire the imaginations of clinicians working in other disciplines as to how they might make use of similar apps/peer support resources in their own specialism.

Speaking to those diabetes specialists afterwards was something of a call to arms. Much money is being spent on healthcare in the UK which does *not* have the ongoing quality of life benefit for individuals that sensor augmented pump therapy offers - let alone the extension of life for pump users as shown in recent research. The case was made to me that it is time the diabetes online community stopped being so darned understanding about the lack of funding for sensor-augmented pump therapy. The time for accepting defeat has passed, and as more and more data are made available from increasingly positive trials, we need to start banging the table if we are ever to move pump/CGM into the mainstream in the UK.

I got the distinct feeling that there are many clinicians who feel strongly that this is the way forward for type 1 care, but that patient voices as part of that change are crucial. Certainly the impact of patient support in Scotland's wider adoption of pump therapy in recent years sets an encouraging precedent.

Yes I *know* we go on about it all the time among ourselves (often with a resigned sigh and bit of self-funding) - but perhaps the moment has come to really start ramping up the pressure.

Disclaimer. My travel, and accommodation was paid for, but I was not paid to prepare or deliver my talk. I was also invited to attend a swanky dinner at the end of the Symposium which was lovely.

Posted by on Saturday, 14 November 2015

Tragedy, togetherness #insulin4all and WDD2015

Today is Frederick Banting's birthday and also, not quite by chance, World Diabetes Day.

I was planning to post something on the blog today, but the appalling, tragic events in Paris last night have completely taken the wind out of my sails.

It doesn't really feel the day to be marking or highlighting anything else. My heart goes out to anyone involved, however obliquely. Parisians who now live in fear as they go about their normal, everyday, uneventful lives. And also to the many hundreds of thousands of innocent people who will now live in fear of violent Islamophobic reprisals.

But life, as the say, goes on. Instead of focussing on the division, violence and horror that a tiny minority are so evidently able to inflict, I find myself trying to focus on the exact opposite.

People, on the whole, are nice.

People, generally speaking, look out for one another.

People, more often than not, want to help - even if they may not receive anything in return.

People care about each other.

Yes of course there is selfishness, self-interest and general all-round rubbishness in human experience. Yes *some* people, perhaps even quite a lot of people, are prepared to do absolutely awful things.

But not most.

Not most.

I can see this in the Diabetes Online Community all the time. People wanting to support and encourage. People wanting to help. Wanting to affirm, strengthen, build up. People wanting to understand other people's point of view. People from wildly different social, economic and cultural backgrounds wanting to improve each other's lives. People willing to give of themselves without expecting, or requiring anything back, save to be part of a bigger, wider, more connected whole.

Better together. Better. Together.

T1 International and The Pendsey Trust are an example of this - attempting to co-ordinate and bring together support for #insulin4all - tiny charities raising awareness about the lack of access to essentials (insulin, test strips, education, healthcare) that many people with type 1 diabetes face around the globe.

As difficult as it can sometimes be to manage life with type 1 diabetes in the UK, it is a complete doddle compared to countries in the world where insulin is unavailable or unaffordable. In this day and age no one should die because they cannot access the insulin they need to survive.

Posted by on Tuesday, 13 October 2015

Painting the Forth Bridge

The Forth Bridge (CC licensed)
Famously, the painting of the Forth Bridge (an enormous railway bridge across the Firth of Forth in Scotland) took so long that by the time the workers finished painting this spectacularly beautiful collection of girders, steel, bricks and sweat, it needed to be started all over again. Apparently this is no longer the case and the painting has finally stopped, at least temporarily, but bear with me here as I indulge myself in a little cliched allegory.

Painting the Forth Bridge - I wonder what it would be like to be one of those people given that task.

Perhaps a young man, in his early twenties. Suddenly, unexpectedly, given this massive undertaking. A job for life. It must surely have been a daunting prospect. But perhaps there was something of a challenge about it too. Something to get stuck into. Something to work towards. And while the tools were, at first, unfamiliar and clumsy, he was determined to see the work done. To do it the best he could. To protect this beautiful structure.

And the days turn into weeks, and the weeks turn into years. And still it goes on. It is hard work. The schedule is punishing, but it has to be done. He pushes on. The tools are more familiar now - he's actually got pretty good at this painting lark. He has picked up some tips from others who have been painting far longer than him. He can even take some of the difficult corners in his stride, the awkward spots that he could never really manage before. Occasionally a new brush or a fresh pot of paint kindles some excitement and interest. Spurs him on. Improves his technique. And then back to the graft.

And some days... some days it is just beautiful. Way up there at the top of one of the arches, alongside friends and co-workers, with the wind gently cooling his face, as the sun beats down on his shoulders. The view stretching for miles and miles. The distant thrum of locomotives passing below. The faintest call of birdsong from the marshes. When he compares his work to others' he thinks, "You know, it's not that bad." He feels lucky. Yes there is work to be done. Yes he has to be careful to keep himself safe, but in comparison to some other working conditions he knows about - he could have done much worse.

There are scary times too. When storms lash and winds howl. This work is no place for the faint-hearted then. But even then... even then there is something to push against. Something to overcome. A battle to be fought. Something almost heroic about it. Those are not the hardest times for him.

It is the grey days he fears the most. The grey, unending, energy-sapping days. Where the fog rises up and obscures everything else.

The days when his paintbrush seems to weigh even more heavily than his heart. When the neverending nature of the task overwhelms him. No matter how hard he tries, no matter what he does. He will never finish. Stroke after pointless stroke. Hour after pointless hour. And still no nearer the end. There is no end. And if he slows down, he only gets further behind. The task goes on and on. Unrelenting. Inescapable.

He has an annual performance review with the HR department. They seem happy enough with his work, but can only talk about the rust and decay that constantly threaten the bridge. The rust... the rust... always the rust. He must not let up they say. He must keep up his workload. They come down pretty hard about Health and Safety too. Apparently, though he tries to be careful and is pretty diligent with his harness, hardhat and boots, he is not doing enough. He could slip at any moment and that would be it. They don't seem to understand the reality of what it's like up there. Sometimes you have to move from point 'a' to point 'b' and it's not always possible to be fully harnessed-up in between.

He ventures to ask about a new piece of painting equipment. It would make his work much easier, and much safer. He has even tried it and has seen what a difference it makes. Unfortunately 'the management' will not provide it. It is too expensive, and they are not sure they believe the promises in the brochure. The HR department are sympathetic, naturally, but the decision is out of their hands. He knows, of course, that his equipment is pretty expensive already. It's not a surprise that the newest and fanciest stuff is out of reach. But his head and his heart feel differently about it. Part of him aches for what might have been. Part of him wishes he'd never even heard of this new stuff.

And the grey days continue. He blunders on. Barely looking at what he is doing now. So tired. So tired of it all. Sometimes he looks at his brushes with loathing. He wants to throw them over the edge. Cast them into the broiling waters below. Just watch the bridge decay and fall. The rust... the rust... To surrender the bridge to the elements.

To stop.

But he can't. He WON'T stop. He pushes down the melancholy as an act of will. He knows so many people that love this old bridge. Who rely on it. Who need it. He wants it to be there for them.

So he picks up his brush one more time.

Sighs.

And carries on.

Posted by on Wednesday, 16 September 2015

No.

Just back from my annual pump clinic. If anyone from my clinic reads this, I'm very sorry. I know I was awful. I had been building up to this for days. Weeks possibly. I already pretty much knew where it was inevitably going to go. I was ready to feel angry and disappointed before we started. You didn't deserve that.

It didn't help that we started with the 'Statins' conversation I've been expecting for several years but have, so far, been spared. It seems I've tipped over the edge of the 'how old' question even for your fairly relaxed attitude. I'm sorry that I find the whole statins/cholesterol thing such a tangled mess of claim and counter claim. I'm sorry that the research into their effectiveness (or otherwise) generally - and also in relation to type 1 is so clouded, murky and beshadowed by claims of vested interest and bias. I'm sorry that I ever read any of that stuff and couldn't just say, "Yes OK". To be honest I'm still not sure that the whole lipid/heart hypothesis isn't fundementally wrong anyway and that I have begun to suspect that the relative benefits shown in Statin studies over all those years may simply be "accurate measures for the prevailing bias". I'm sorry there is no way to accurately work out whether they would be worthwhile for me as an individual. I'm sorry I didn't, couldn't just take your word for it.

Thank you for agreeing to differ with me. And YES. I genuinely did mean that I would continue to think about this as I grow older.

I'm sorry I don't know what you mean by 'a hypo'. What number or frame of reference you wanted me to use. I'm sorry that by now (while you were still impeccably professional and cheery) you were probably wishing I would just shut up and go away.

I'm glad that you were pleased with the reductions I had seen in hypoglycaemia, particularly overnight with the combination of MM640G and CGM.

I'm sorry that it's not an option that is available to me.

I'm sorry that the CCG has approved no CGM applications on compassionate grounds in the last 2 years.

I feel sure that you would like to help more people with technology like this. I'm sorry that you are not able to.

Next year I will try to just come in, fill in my boxes on the forms, answer your questions, and then go away again.

Posted by on Saturday, 12 September 2015

64 Days with the Medtronic 640G: Ep 9 Review - the best and worst of the MM640G

Well, this is it. The last of my posts covering my time with the Medtronic MiniMed 640G. Thank you so much for bearing with me over the last few months. Normal wittering will be resumed shortly. However, as seems to be the way of things with blockbuster franchises (HA!) I have split this last episode into two parts. Part (i) covers all the little niggles and irritations I had while using the MM640G, while part (ii) looks at the things I loved, and reviews my results including reductions (if any) in hypoglycaemia and an HbA1c I had done at the end of my time using the pump. HbA1c is the test which measures how much of the glucose in your blood stream has stuck to red blood cells. It is often used as a measure of your likelihood of developing the long term complications of diabetes.

For those who really can't bear wading through all those minutes of video I will summarise the results below. The video gives a lot more detail though, and features a fluffy bunny. What's not to like?!

When it comes to the things I really liked/disliked about the MM640G you will need to bear in mind that I am comparing to a MiniMed Veo. All of the really good stuff about pumps generally - precise basal patterns, advanced dual and square wave bolus options for tricky meals, ease of use, bolus calculator, temporary basal rates, precision of doses and correction factors, blah, blah, blah... are already assumed to be present and correct. Some of the things I loved about the MM640G are precisely because they fixed annoyances I found with the Veo. But more on that later. First:

The worst of the Medtronic MiniMed 640G

Those who have read any of my reviews before will know that I can get unreasonably irritated by the slightest things. It will come as no surprise then, that while I generally loved the MM640G both with and without sensors, there were a few things about it that drove me nuts.

  1. Pump lock
    After a few minutes the pump automatically locks and most interactions require you to play an annoying 'press the right button' game. This is no good if you are in a hurry, and is not an option that can be turned off.
  2. Change of orientation
    It's now 'portrait' not 'landscape'. As someone who wears an insulin pump on my belt this is a bit awkward.
  3. Belt clip
    As I mentioned in the first of these videos, the new belt clip is hopelessly flippy-floppy and needs a much firmer spring. The inbuilt tool for opening battery cap is cool though.
  4. No small versions
    Medtronic have now abandoned plans to produce a smaller version of the pump. All MM640Gs will now have the little sticky-up bit to accept the larger reservoirs. The smaller reservoirs can still be used, but at present, with approximately 35u/day usage, the 'how full is my reservoir' icon on my status bar is pretty much permanently red.
  5. Sensor overtape irritation
    The glue used on the sensor overtapes (and also the little patch that holds the sensor down initially) caused a red rash to appear after a couple of days of wear. Initially it was only toward the end of a sensor but in the end it began pretty much at day 2. I used an alternative dressing, but even that was pretty itchy. Weird - because I don't usually react to adhesives at all.
  6. Sensor swap delays
    From start to finish swapping a sensor takes around 3 hours to begin providing new continuous data. That's a looooooong time!
  7. Occasional sensor lag
    Mostly I found the sensor accuracy was brilliant. But sometimes, particularly if I treated a low to try to fix a below target BG reading, the sensor was a little slow in responding (perhaps 30 minutes behind reality). Additionally calibrations by BG meter do not necessarily reach up to match sensor glucose and BG fingerstick value, but often end up with some odd half-way house. If the sensor glucose value had drifted a little there were even occasions where calibration triggered an 'alert before high' which was doubly annoying.
  8. Sensor Glucose Review
    The one-day graphs which allow you to flick back through previous days' results show no indication of SmartGuard interactions or insulin doses. Makes them about 10% as useful as they could have been.
  9. Home screen without sensors
    For no apparent reason, the icons in the status bar do not align neatly when using the MM640G without sensors. There's a gap where one of the sensor icons(!) would go, which makes it look untidy and poorly considered. The enormous dotted line 'we have no BG information to show you' panel where recent meter BG readings go (when not using sensors) also irritated me more than strictly necessary. Just doesn't feel like the visual look of the home screen for most UK users, who will be using the MM640G without sensors, was given enough finesse.

Watch the video

The grumbles, gripes, and irritations - everyone will have their own, I'm sure.




The best of the Medtronic MiniMed 640G

Whether you use the MM640G with sensors or not there is a LOT to like about it. There are all sorts of little, pleasing improvements in the interface and options that make a massive difference. Add the wizardry of SmartGuard into the mix and things are taken to another level - but even without there are lots of tasty treats for non-sensor users.

  1. Setting basals and temp basals
    There are now up to five basal patterns on the MM640G, and brilliantly you can copy entire patterns from one 'slot' to another to experiment with and then switch back if you need to later. The patterns also come with helpful names to keep track of which are which: Work Day, Day Off, Sick Day, Pattern 1, Pattern 2. Which pattern is set is not marked on the home screen, but thankfully setting any of them does not cause the 'alert circle' to appear like it did on the Veo.

    Temp basals can now be set in 15 minute increments for more precision and alter up and down by 5% at a time making them much quicker and less fiddly to set.
  2. No TBR 'chime'
    Setting a Temporary Basal Rate no longer causes the pump to issue a useless wittery alert tone every hour, which means you can ACTUALLY USE THEM OVERNIGHT! In even better news - the end of a TBR is now indicated by a single beep. Brilliant!
  3. Different Alert Tones
    There are now a series of different alert tones to indicate different things. There were a few on the Veo, but so many overlapped with either 'pip-pip-pip' or 'naah-naah-naah' that I find it much easier to work out what is going on on the MM640G without having to check the pump for 'information' alerts and being alerted (ha!) to things that actually require action. The ability to increase volume has also significantly improved.
  4. No lockout during bolus delivery
    It is possible on the MM640G to do rather more things during the time while a reasonable sized bolus is being delivered - for example you can set a TBR. The Veo made you wait until the bolus had finished before allowing you to do anything (other than stop the bolus!). This meant I could group my pump interactions together and then get on with life, rather than having to wait around tutting.
  5. Screen visibility in sunlight
    Really, really good - especially compared to some other colour-screen diabetes gadgetry I have tried. Not perfect from every angle, but really easy to turn a little and see very clearly even in direct sunlight.
  6. Remote boluses from BG meter
    Not a full remote control with bolus wizard, but a really useful standby when digging your pump out from within clothing is impractical or inconvenient.
  7. Waterproof
    Now rated as IPX8 - up to 12 feet of water for up to 24 hours.
  8. SmartGuard - overnight hypoglycaemia
    Unsurprising if you have watched my Overnight Hypoglycaemia post, but SmartGuard overnight for me was a real stand-out winner. No readings at all for 9 weeks below 3.5mmol/L overnight, and hardly any below 4.0mmol/L. Some nights almost no basal insulin required, and others requiring my more 'usual' 6-7 units at night. Looking at the results it's hardly surprising I had so many problems and so much Severe Hypoglycaemia during my years on Lantus!
  9. SmartGuard - results overall
    When compared to averaged results from 10 weeks of Libre sensors (the only other 24 hour data I have) time in hypoglycaemia fell by 90% during my 9 weeks with the MiniMed 640G. At the same time my overall levels, as measured by HbA1c fell by 0.3%. And all this with less effort and very little 'alarm fatigue'.

Watch the video

Improvements to the pump (with and without sensors) and the all important results.



Conclusion

It has been a great privilege to experience the MM640G system, and for me the results were spectacularly good. The comparison with Libre data is an interesting one, particularly where hypoglycaemia is concerned. Times wearing a Libre sensor were previously my 'best ever' results-wise. The ability to spot hypos coming during the day and try to head them off (I generally scan a Libre sensor something like 30-40 times a day), plus the ability to spot low levels overnight and make hurried basal rate changes meant that I generally had fewer hypos on a Libre than I would normally. And yet when compared to these data, the MM640G system reduced my time spent in hypoglycaemia by 90%. To be clear, that means that for every 10 minutes I spent below 4.0mmol/L trying my very hardest with a Libre sensor, I would spend only one minute when using SmartGuard. That and my HbA1c dropped over the same period from 6.3% to 6.0%. 0.3% - it's not a huge margin, but those fractions are pretty tricky to shave off once you get down below 7.0 in my experience.

My only hint of melancholy about the whole experience is, of course, the eye-watering cost of full-time sensor coverage (approx £3,500 per year inc transmitter). It's not something we as a family can afford, and full time CGM on the NHS is reserved for those who really need it most - and rightly so.

It feels a little like being given a chance to live in a multi-million pound mansion and drive an Aston Martin for a few weeks to see how I like it. I may think it's brilliant - but the reality is that it's not really an option that is really open to me long-term.

I have a pump clinic coming up in a week or two and will see what they say about the results - particularly my unpredictable and occasionally lengthy periods spent below 4.0 overnight. These do nothing to help my efforts to keep my Imparired Awareness of Hypoglycaemia under control. I may ask about the possibility of part-time sensor coverage. Even a few months in a year would make a massive difference (as long as the transmitter continued to function, of course).

My Veo is nearing the end of its warranty period, so I am looking to the future. I have some thinking and some sums to do after this experience - depending on what my clinic say.

Final verdict (with sensors and SmartGuard): 5/5
Final verdict (without sensors): 4/5
Final verdict (considering self-funding sensors): 4/5*

* because of Dexcom's more 'stretchable' reputation when it comes to sensor life

Disclaimer: I was offered a trial of the Medtronic MiniMed 640G system for 64 Days with full sensor coverage so that I could share my opinion and experience good or bad. I was not paid to write this post, and if I had thought the pump was terrible I would have written that. I was encouraged (not required) to post video blogs about my experience, but Medtronic did not have any control over what I posted.

Posted by on Monday, 31 August 2015

64 Days with the Medtronic 640G: Ep 8 Fine-Tuning SmartGuard

For all the times when SmartGuard has worked brilliantly for me (and there are - too many to count), there have also been a number of situations in which it seemed to make a bit of a mess of things. Overshooting and leaving my higher than I'd like... kicking in when a hefty carb load was just about to arrive and stopping basal for that 30 minute minimum (during which time I would be having a high glucose alert)... or cancelling various parts of dual and square wave boluses which I then may not spot until slightly too late.

I'm sure each user would have their own list - but these are my own #SmartGuardFails and some of the techniques I have tried to fine-tune the alerts and levels to work around them. It's interesting how irritating these odd occasions can be, and I suspect it is only because, well for me anyway, SmartGuard has worked so *brilliantly* for so much of the time that they really stand out.

If you have any MM640G SmartGuard tips and tricks of your own (or any other comments or questions), please leave a comment below.

Posted by on Wednesday, 26 August 2015

New NICE Guidelines for Type 1 Diabetes Published (at last!)

As some of you may know, over the last three years (THREE YEARS??!?) I have been working with a wonderful group of fiercely clever and passionate people as one of two 'patient representatives' on the NICE 'Guideline Development Group' which was revising and updating the NICE Guidelines for type 1 diabetes in adults. Expert consultants, eminent physicians, nurses, pharmacists, GPs, educators, editors, along with a host of other specialists including researchers and health economists who gathered and organised an almost unimaginable quantity of research data for the group to filter through and consider.

It has been a huge privilege to work with them all, not least Professor Amiel, the chair of the group, who is a complete inspiration and quite the nicest person you could meet. We have not been permitted to mention anything much connected with the discussions until publication, but at last, today, the guideline launches here: ‘Type 1 diabetes in adults: diagnosis and management'.

Hooray!

If you have been living in a cave for the last 16 years and have never heard of the National Institute for Health and Care Excellence (NICE), they are an independent body working as part of the Department of Health who publish guidance on all manner of healthcare topics which aims to set the 'gold standard' of evidence-based care, balancing clinical outcomes, patient preference and quality of life against the cold hard reality of NHS budgets (ie Yes! You can have something expensive... but only if published research shows it's reeeeeally good for most people).

As a patient, I *love* the fact that I can have a weighty, official, authoritative document that describes what has been shown to be the very best in diabetes care. It gives me something to consult to measure my own experience in clinic, and the right kind of pointy questions to ask if I think I should be getting something that isn't being offered. Plus if I think something should be available that isn't, the documentation is so comprehensive that (if I wanted to) I can dig down into the 'linking evidence to recommendations' section to unpick the reseach and discussions that underpinned the recommendations.

NICE seems to get a hard time in the press off and on (either for denying treatment, or for recommending it) and is frequently accused of bias or an almost corrupt collusion with the pharmaceutical industry. I have to say this could not be further from my experience of the guideline development process. Each meeting included a new declaration of 'conflict of interest' and anyone with a conflict, financial or otherwise, however minor, was not permitted to contribute to the discussion or was asked to leave the meeting entirely.

I am very proud to have been part of the process, and believe that this updated guideline, if fully implemented has has enormous potential to improve the lives of adults living with type 1 diabetes in the UK.

Here are a few things I'm really pleased made it into the final version:

Structured education
Offer all adults with type 1 diabetes a structured education programme of proven benefit, for example the DAFNE (dose-adjustment for normal eating) programme. Offer this programme 6–12 months after diagnosis.

If a structured education programme has not been undertaken by an adult with type 1 diabetes by 12 months after diagnosis, offer it at any time that is clinically appropriate and suitable for the person, regardless of duration of type 1 diabetes.
My feelings about the lack of structured education formed no small part of my journey toward joining this NICE committee. Carb counting, dose adjustment, correction factors, basal testing, guidance about exercise, alcohol and sick day rules. How can people be expected to make a decent go at managing their type 1 diabetes without these skills? And yet the number of people who have ever attended such a course is pitifully small. Unless I'm mis-remembering it's something like 6.5%. Let's hope that during the life of this guideline that changes significantly.

Access to test strips
Support adults with type 1 diabetes to test at least 4 times a day, and up to 10 times a day if any of the following apply:
  • the desired target for blood glucose control, measured by HbA1c level (see recommendation 1.6.6), is not achieved
  • the frequency of hypoglycaemic episodes increases
  • there is a legal requirement to do so (such as before driving, in line with the Driver and Vehicle Licensing Agency [DVLA] At a glance guide to the current medical standards of fitness to drive)
  • during periods of illness
  • before, during and after sport
  • when planning pregnancy, during pregnancy and while breastfeeding (see the NICE guideline on diabetes in pregnancy)
  • if there is a need to know blood glucose levels more than 4 times a day for other reasons (for example, impaired awareness of hypoglycaemia, high-risk activities).
'Proper' testing frequencies of up to 10x a day (and making use of the results) shown to be more effective AND cost-effective. No more shocked looks permitted from non-specialist Drs or nurses suggesting a couple of times a week should be fine.

HbA1c Target
Support adults with type 1 diabetes to aim for a target HbA1c level of 48 mmol/mol (6.5%) or lower, to minimise the risk of long-term vascular complications.

Agree an individualised HbA1c target with each adult with type 1 diabetes, taking into account factors such as the person’s daily activities, aspirations, likelihood of complications, comorbidities, occupation and history of hypoglycaemia.
I've written about this before. Personally, as a patient, I am really pleased with the balance between these recommendations. Don't tell me to be happy with an A1c approaching 8% if there is real evidence that lower is better to guard against long-term complications. Don't tell people who have no problematic hypoglycaemia that their A1c is 'too low' because it's in the 6s (can't get used to the new numbers yet, sorry!). On the flip side, treat me as an individual, don't label me as a failure because you have a magic number in your head that I am working toward, but I'm not there yet.

Not exactly 'CGM for all', but...
Consider real-time continuous glucose monitoring for adults with type 1 diabetes who are willing to commit to using it at least 70% of the time and to calibrate it as needed, and who have any of the following despite optimised use of insulin therapy and conventional blood glucose monitoring:
  • More than 1 episode a year of severe hypoglycaemia with no obviously preventable precipitating cause.
  • Complete loss of awareness of hypoglycaemia.
  • Frequent (more than 2 episodes a week) asymptomatic hypoglycaemia that is causing problems with daily activities.
  • Extreme fear of hypoglycaemia.
  • Hyperglycaemia (HbA1c level of 75 mmol/litre [9%] or higher) that persists despite testing at least 10 times a day (see recommendations 1.6.11 and 1.6.12). Continue real-time continuous glucose monitoring only if HbA1c can be sustained at or below 53 mmol/mol (7%) and/or there has been a fall in HbA1c of 27 mmol/mol (2.5%) or more.
'Consider' is NICEspeak for a much weaker recommendation. It should be on the table, but it's not for everyone. The evidence for effectiveness of CGM was just not compelling enough to do anything else at it's current eye-watering pricetag. To be honest I was shocked at how weak it was, given the experience of people I know who self-fund CGM. Continuous Glucose Monitoring it seems just doesn't do well enough in Randomised Controlled Trials. But at least, here, it *might* be available on the NHS to the people who really need it.

And finally
It was great to see bi-modal (mixed) insulins being given the heave-ho, unless people really wanted to use them. From now on people should be able to start off on a proper flexible MDI regimen from the outset, along with some good education and support.

It was also really heartening to see how NICE reacted to the subject of language. The editors were updating the old recommendations for clarity and new styling (for example 'adult with type 1 diabetes' rather than 'diabetic' or 'patient'). I raised the question of the word control which is a difficult term for some people. Personally I cannot 'control' my diabetes - I do not have the ability to affect all the variables. At best I can limit some, and try to react to, or work around the others. I don't control my diabetes, I manage it. Because of the timing of the discussion, it was not possible given the time-restrictions to change the terminology used in the full guideline (though discussions will be had within NICE for future versions). I was very pleased though that for the 'Information for the Public' version, the phrase 'diabetes control' has been replaced.

What do you think? Will the new NICE guideline make any difference to you? Were you even aware that there was one to cover type 1 diabetes? Let me know in the comments below.

Posted by on Sunday, 23 August 2015

64 Days with the Medtronic 640G: Ep 7 Overnight Hypoglycaemia

Those of you who can remember way back when this blog started (if you even exist, you have my undying affection for your extraordinary stickability) may recall that we were prompted to start writing a blog about my diabetes as a family after a particularly nasty overnight hypo. It was the beginning of me realising that I was *nothing* like as good at the whole 'pretending to be my own pancreas' lark as I had managed to convince myself that I was. I began to realise how much I didn't know, and that one event led me to connect with literally thousands of others wrestling their own diabetes into submission every day. My life, and particularly my diabetes management are very much the better for it.

Overnight hypos have been a bit of a recurring theme throughout my 25 years of living with type 1 diabetes. I am lucky in that I have never needed paramedic callouts, but there were many times along the way when Jane had to step in at breakfast time to 'bring me round' in the years before we started writing this blog. I look back at those early posts and am bewildered and ashamed that it took me quite so long to realise how much effect this was having on everybody else in the family. How unfair it was on them. At the time though, I guess I had convinced myself that my management was 'as good as could be expected'. I knew I was having 'A few too many highs... a few too many lows'. But doesn't everyone?

If you are the sort of person who approaches anywhere near 8 hours a night when you live with type 1 diabetes, you are spending fully a third of every day in the land of nod. That is an awful lot of time for things to go wrong - especially if your basal insulin dose is not adjusted correctly* or your requirements have moved since you last checked. You may be lucky enough to get clanging warning signs when you dip below 4.0mmol/L - enough to wake you up and sort yourself out. But you can't rely on them. And the more and longer the periods you spend below 4 during the night, the more of a hammering your hypo awareness will take and the less you will feel them. A classic vicious circle.

I am coming toward the end of my 64 days with the MiniMed 640G now (Medtronic have kindly allowed me to keep hold of their toy for a little while longer as there are a couple more posts I'd like to put together). Today seemed like a good opportunity to gather some of the snippets of video that I've been filming since the beginning and edit them into a 'SmartGuard vs Overnight Hypoglycaemia' post. Has Smartguard made any difference? Has my overnight hypoglycaemia reduced at all?

Watch the video below to find out what has been happening over the last 9 weeks. As always, I'd love to hear your comments or any questions, please leave them below or post on my Youtube channel.



*During the video, I mention how important I have found the concept of basal testing over the last few years, both on MDI (multiple daily injections) and also on a pump. Systematically testing and adjusting my basal insulin on an ongoing basis helps me to keep my meal doses and corrections working more or less as I expect them to (ha!). It was one of the most significant 'new concepts' I discovered when I first started comparing notes with other people with type 1 diabetes online. If you'd like to know more read this post by Gary Scheiner (Think Like a Pancreas) which explains the principle. It is written for pump users, but would be easy to adapt for once- or twice-daily basal insulin injection on MDI.

Posted by on Monday, 17 August 2015

64 Days with the Medtronic 640G: Ep 6 Ordering supplies online

In some ways one of the nicest additions to my general 'managing diabetes malarky' over the past 12 months or so has not really been anything to do with managing blood glucose levels or complicated diabetes technology at all. It has been a very simple addition to my routine in that Medtronic, as of the middle of last year, became the first and only UK insulin pump company to set up an online 'e-shop' for re-ordering pump supplies. This means I can place an order for new infusion sets, reservoirs and other gubbins 24 hours a day, 7 days a week. Best of all the process is nicely streamlined, so it only takes me a handful of 'clicks' to place an order, which is then usually delivered in approximately 3-5 working days. I never had a real problem with phoning the orderline and speaking to the (always very helpful and lovely) staff at the other end... But the e-shop is just completely effortless and means I can place an order whenever I want to.

I'm not the most organised of people, and can easily get distracted when intending to re-order my supplies, then forget all about it. n fact I try to re-order deliberately early jyst to make sure I don't get caught out. So it's a great help to me that I can go online and place an order whenever I think about it, rather than having to wait until a customer-care phoneline is open and try again.

There are other benefits for registering with Medtronic's e-shop too. Registered users get access to an online e-support newsletters 'MiniMed Care Connect', with hints and tips covering things like sick day rules, sport/exercise, back-to-school suggestions and generally getting the most of your insulin pump. There are also promotions and cost-savings available to registered users including a soon-to-launch 'loyalty scheme' which offers reductions in the cost of Enlite sensors for those who are self-funding. More on that as details emerge...

In the meantime, here's a quick video of the process:


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Posted by on Tuesday, 4 August 2015

64 Days with the Medtronic 640G: Ep 5 Changing Infusion Set

I don't know... You wait weeks and there are no turgid video blog posts from me that you need to avoid, and then suddenly two come along within the space of a week.

For this latest episode as part of my 64 days with the MiniMed 640G, I thought I would run through the process of changing infusion set including a walkthrough of the MM640G pump screens. Don't be put off by the hefty 17 minute running time - it's a LOT quicker to do when you aren't waffling on and explaining things as you go.

For what they are worth, I've included some of the little hints and tips I've picked up over the last few years which seem to reduce the number of bubbles I get in the reservior/tubing (everyone's second favourite insulin pump nuisance). This isn't advice you understand, and check with your healthcare providers blah blah blah, but personally I seem to get very few problems with bubbles these days and if any of it gives you some ideas to experiment with for your own set changes then great (but on your own head be it).

The only thing I did not explain very clearly in the video is the importance of using room-temperature insulin. Bizzarely, oxygen is more soluble in colder liquids, so if you fill perfectly and bubble-free with insulin straight from the fridge you can find that you get bubbles emerging from the insulin inside the sealed reservior, after filling, as the insulin warms up. Not helpful.

Anyhow - here it is. Enjoy. And do leave any comments, questions or set-changing tips of your own for me below.

Thanks for watching!


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For an alternative video detailing a set change using Medtronic QuickSets check out this great post by Dave Sowerby.

Posted by on Sunday, 2 August 2015

64 Days with the Medtronic 640G: Ep 4 SmartGuard vs Mountain

We have just returned from a wonderful holiday among the Black Mountains, Brecon Beacons and Cambrian Mountains in the middle of Wales. The weather was as mixed as you might expect, but we did grab the opportunity of one of several gloriously sunny days to walk the popular path up Corn Du and Pen Y Fan which the walking guide proclaims to be 'the highest peaks in southern Britain' (presumably Snowdon counts as ooop North).

It seemed like a reasonable 'test case' for SmartGuard and exercise for me. Things were a little complicated by a fairly active morning with a fairly hefty Temporary Basal Rate which I had slightly overdone so as to be confident to drive, meaning that I approached lunchtime in pretty much double figures (180ish for US readers). Often I would choose to reduce my pre-exercise meal bolus a little, because I tend to get very sensitive to any active insulin once I start moving. I didn't want to do that this time though as I was fairly high to start with and in some dim corner of my mind there is something squirreled away about exercising at high levels being Not The Best Idea.

So there you go... the scene is set, the reality TV style 'manufactured peril' is in place (Solemn face to camera... 'But exercising at those levels, and with all that insulin on board - just what will happen')...

Let the drama unfold.

Oh, and as if that were not enough excitement, you may notice I am sporting an impromptu 'holiday beard' in this video. Feel free to express your opinion, hilarity or horror at this unexpected turn of events by voting #beardyes or #beardno in the comments.

Thanks, as ever, for watching.

Any questions or comments, please leave them below.


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Posted by on Friday, 17 July 2015

64 Days with the Medtronic 640G: Ep 3 What is SmartGuard?

Here's another little update on my time with the Medtronic MiniMed 640G. This time it's a look at what SmartGuard is and how it works. When someone first tried to explain how SmartGuard worked to me I can remember it felt bewilderingly complicated, with all sorts of levels and numbers flying around. Actually once you have got your head around it, I have found it relatively simple - so I'm trying to explain it here with a little animated diagram that tries to work through an example of how and when Smartguard is activated, and what it does.

It should be remembered, of course, that for all it's magic, SmartGuard is not supposed to replace hypo-treatment entirely. Unfortunately for all the over-enthusiastic media hype about the 'Artificial Pancreas' when the MM640G launched, we are nothing like there yet. SmartGuard is a useful step in the right direction, but a full AP it ain't. For starters, there are many situations in which stopping your basal insulin will simply not act quickly enough, or have enough impact, to head off an impending low. And there are other situations where SmartGuard might be triggered for all the right reasons, but not actually have been needed and you end up higher than you'd like because of it.

I'll cover some of those situations in more detail in another blog - but for now, let's focus on those gentle (or not so gentle) drifts below 4.0 which SmartGuard effortlessly squashes without bothering you with any irritating alarms.

When it works well, it genuinely feels like you have a little 'diabetes helper' by your side, actively looking out for you. Not something I have ever felt about any other piece of diabetes technology.

If you have any questions or comments, please do leave them below. I'd love to hear what you think.


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Posted by on Wednesday, 15 July 2015

#135shoes - 108 unnecessary amputations a week

Diabetes UK have been working on their 'Putting Feet First' campaign for some time now, but today is the day they are really trying to hit hard with it. They are staging an event in Westminster featuring 135 shoes scattered across a lawn, each bearing a note of the impact that amputation, or living with the threat of amputation can bring. The statistic is horrifying, but even more gut-wrenching is the byline. Eighty percent of these amputations could have been prevented. Eighty percent. It strikes a particular chord with me as I am aware that Bristol, where I live, has a particularly high rate of amputations compared to the national average.

Having lived with diabetes for over 25 years I have spent quite a lot of time trying not to think about complications, but if you are lucky enough to still have all ten toes attached, just think for a moment about the impact on your every day life of losing one or both of your feet. Of the additional challenges that would come with a million every day moments. Stairs, nipping to the shops, running for the bus, running for pleasure, sports, shoes, paddling in the ocean, walking the dog... And for 108 of those 135 people, this devastating event might have been prevented.

Many of the people who live very real and very human lives behind this cold, hard statistic will be living with Type 2 Diabetes. They will be used to having people assume that this is all their own fault. That they should be ashamed of themselves. That they have only themselves to blame. Because type 2 is a 'lifestyle' disease, right? "Too many cakes and not enough exercise you poor, waddling excuse for a human being". Blah blah blah. So on top of the physical trauma and day to day difficulties faced, they will be heaped upon with guilt for the enormous cost of their treatment to the tax payer. What remains of their self esteem crushed beneath the weight of media, public and family opinion and in some cases even a medical profession that seems to overtly judge them as failures.

But is it really as simple as that? And even if you think it is, what fruit does that mindset bear?

Personally I don't believe that it is. There is a lot in this article, You did NOT eat your way to type 2 diabetes, that makes a lot of sense to me. Now that's not to say that I dismiss the concept of personal responsibility entirely. Of course not. If some people had made changes perhaps they could have dodged their diabetes diagnosis. But it just seems to me that many (most?) people who live with Type 2 diabetes were doing pretty much what everyone else was doing, it was just that their metabolisms weren't up to dealing with the semi-toxic combination of a modern Western diet and a massively wealthy and profit-hungry food industry.

But getting a diagnosis of diabetes (of either type!) surely should not inevitably lead to 135 people each week undergoing expensive life-altering surgery. Our understanding of managing long term conditions, like diabetes, seems to be improving year on year, and yet many of the outcome measures seem to be  getting steadily worse.

How can we change the balance so that there are only 81 shoes on the lawn?

Here are a few thoughts from my unqualified, unmedical viewpoint:

  1. Get your feet checked every year
    This is for us lot with diabetes really. Foot checks are supposed to be part of your annual review every year. Go to your appointment and make sure you get your pulses and sensitivity checked. If there are any problems you want them spotted early.
  2. Stop telling people that diabetes is inevitably progressive
    This is less a factor for us living with Type 1, but many with Type 2 are set up to fail from the outset - if something is inevitable, why bother putting in effort to prevent it? Effective managment of diabetes is a relentless slog, we need to be encouraged that the effort is worth it. Don't blame people if they need more or different medication as time goes on, but never make them feel like it is not worth trying, that there is nothing they can do. Focus more on the positive benefits of effective management in the short and long term.
  3. Stop telling people that type 2 is 'mild'
    Incredibly this still seems to be suggested to some people. That type 2 is not really very serious and doesn't need much attention paid to it. I much prefer the quote about diabetes and tigers: "Living with diabetes is like living with a tiger. If you feed it, groom it, never turn your back on it; you can live with a tiger. If you neglect it; it'll pounce on you and rip you to shreds."
  4. Start telling people to watch their carbs
    Diabetes is a long term condition. People were diagnosed with it years ago, and told the information that was felt appropriate then. Some years ago people diagnosed with type 2 diabetes often significantly increased their 'starchy carb' intake on the advice of their healthcare professionals. Almost all sources now seem to acknowledge that moderating carbohydrate intake - and not just sugar, ALL carbohydrate - is beneficial for people with diabetes. Now I'm not going to open the low-carb can of worms here, because what I am talking about is really more to do with better BG outcomes than any arbitrary label you might place on a number of grams of carb a day that you might feel works for you. Which leads me nicely on to...
  5. Allow motivated patients to check their Blood Glucose
    The vast majority of people living with diabetes in the UK have type 2. And the vast majority of them are told, time and time again, that they do not need to test their blood glucose levels. That the 6-monthly HbA1c test is enough. I could write a long and ranty post about how we seem to have got ourselves into this mess (including the Farmer et al study that is still used as an official reason why SMBG - self monitoring of blood glucose - for type 2 is not recommended) but I would rather talk about the motivated people I see on diabetes forums. They fund their own strips because their surgery won't. They test before and an hour or two after eating something (whenever they generally get their highest reading). They look at the results and the quantities and types of foods eaten and make adjustments. They use the very pre- and post-meal target values that are in the same NICE guideline that denys them access to SMBG. And as a result? They are able to actively tailor their diet to suit their own diabetes, many are able to reduce or emilinate medication and their HbA1cs usually fall well outside of the 'danger zone'. And if they can do it... so can hundreds and thousands more if given the right testing framework, simple guidance and 6 month's or a year's worth of strips for that intensive early testing.

Well done to Diabetes UK for highlighting this important topic. I hope some action can be taken to reduce the enormous, unnecessary, financial and personal cost behind these statistics.

Posted by on Thursday, 9 July 2015

64 Days with the Medtronic 640G: Ep 2 The first 28 days' results

I wasn't expecting to be posting this blog today (well it seems like it'll be tomorrow by the time it has uploaded, but it's still today as I'm typing this). I had a vague plan that I'd do an introductory blog, and then move on to explain what SmartGuard was and how it worked. But today marks 4 weeks since I have been living with the MiniMed 640G and having looked at the results so far to say I am impressed is an understatement.

Ever since diagnosis, if I'm honest, I have preferred to run on the low side rather than on the high side. Lows were quick to sort out and usually involved eating something sweet and tasty, while highs took much longer to come down and, while they did not make me feel particularly grim like they do for many people, they also carried with them the spectre of all those diabetes nasties waiting in the wings. Blindness, kidney failure and amputation vs fruit pastilles seemed an easy choice to make.

Of course running on the low side and 'preferring' hypos is not a brilliant plan. My hypo awareness began to take rather a dent and I spent many years with significant hypo unawareness and the severe hypos that go with it, especially overnight. Looking back I am ashamed that I did not realise the pressure and stress that this placed on my whole family and especially Jane.

Pretty much since we began writing this blog I began to try to reduce my incidence of hypoglycaemia and regain my warning signs, and generally wrestle my diabetes into behaving itself a little better. I have put quite a bit of work in and learned a lot. Thankfully I have not had an episode of Severe Hypoglycaemia for something like 3 or 4 years now - long enough ago that I can't remember anyway. But for all the success there have remained a stubborn few dips under 4 (which may or may not be hypos depending on your definition) that I have been unable to tame.

This video blog examines what effect SmartGuard has had to my results in these first 4 weeks.


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Posted by on Friday, 3 July 2015

64 Days with the Medtronic 640G: Ep 1 Introduction. Comparing the MM640G with Paradigm Veo

Following on from my early preview of the MiniMed 640G insulin pump, I have been invited by the fine folks at Medtronic to spend 64 days with their new box of tricks, and to share my experiences through the slightly scary and unfamiliar medium of video blogging.

It's what all the cool kids are up to (apparently).

For this first installment I have tried to do a little compare and contrast between the Medtronic Veo and the new MiniMed 640G. Just a few things that have struck me during my first couple of weeks of use really. I'm not yet going to mention Smartguard and compare that feature to the Veo's Low Glucose Suspend, partly because I think that Smartguard deserves a vlog all of its own, but mostly because I have never used sensors with my Veo so have nothing to usefully compare.

I am hoping to post a video every week or so over the 64 day period, but I have quickly come to realise that this video blogging lark is nothing like as easy as everyone makes it look, so you may have to bear with me on timings. I'll announce any new episodes here and on Twitter, naturally, but if you are really keen I suppose you could always subscribe to what is now laughably described as my YouTube Channel.

In the meantime you can find some more, rather more coherent information on the MiniMed 640G here.

And please do check out the video blogs of other MM640G users too.

Leave any comments or questions here or on YouTube and I'll do my best to answer them.


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Posted by on Thursday, 4 June 2015

Release your inner diabetes Hobbit - Guest post for Diabetes UK

My diabetes, yesterday.
Last weekend we finally got around to watching the last part of Peter Jackson's mammoth 'Hobbit' trilogy "The Hobbit: Battle, battle and a bit more battle" on one of those newfangled instant video services (pauses to wistfully remember trawling the aisles of tiny, ramshackle video rental shops all those decades ago). During one of the epic-wide-shot-sweeps across the thundering conflict there emerge, through dust and fracturing hillsides, several enormous, lumbering cave trolls - staggering about, squashing people and generally getting in the way.

They reminded me more than a little of my diabetes.

Except that my diabetes doesn't often wear a little wooden backpack-style platform of Orcs throwing rocks. Although some days...

I think it was the thick-headed stagger of them that made me draw the comparison. The turgid movement. The stupidity and utter disregard for anyone or anything around them. Yup, my diabetes can be all of those things. Slow, stubborn and very hard to work around.

The heroes of the film, by contrast, are tiny, fleet of foot and scamper around very nimbly. Dancing and chasing in and out, between legs and around corners, while the grunting Diabetes Troll laboriously lifts its impossibly-heavy hammer for another ill-aimed swipe.

But there is obvious peril here. Running rings around the hapless troll is all very well, but unless you keep your wits about you, and ideally keep your distance from the 'complications' hammer sooner or later you run the risk of getting squashed.

Mercifully, diabetes complications are pretty slow moving for the most part. And an occasional out-of-range reading here or there does not necessarily mean that our kidneys pack up immediately or our eyes are instantly fried [Good job too looking at my BG results this week!]. But there is a danger in that. It is all too easy to become a little complacent. Doing something now that (you hope) will reduce the chances of *something* not happening 5, 10 or 20 years from now is not a brilliant action-reward feedback loop. What someone once described as, "We work hard so that nothing happens... We hope that all of that "something" we do leads to nothing - Nothing is a pretty lousy reward".

All that effort and nothing to show for it. Are we doing enough? Do we need to do more? And we can't rely on our feelings to measure these things. There are no pain-measuring nerve endings in many of the places that our Diabetes Troll might be taking a swing at. And the swing itself might be so slow as to be almost unnoticeable until it's right there upon you.

And that is why the 15 Healthcare Essentials recommended by Diabetes UK are SO important. The first 9 or 10 represent really important annual checks which allow you to keep an eye on your Diabetes Troll. And if you discover that you are straying a little too close for comfort, having these checks done every year allows you to take action early to reduce your risk of getting squished. Between 10 and 15 there are really important parts of your care package which will allow you to improve your hammer-dodging skills, brush up on your swordplay and make sure your mind, as well as your body are ready for the fight.

15 Healthcare Essentials Checklist

  1. Get your HbA1c measured at least once a year
  2. Have your blood pressure measured and recorded at least once a year
  3. Have your blood fats (such as cholesterol) measured every year
  4. Have your eyes screened for signs of retinopathy every year
  5. Have your feet checked every year
  6. Have your kidney function monitored annually, including having your urine tested for protein
  7. Have your weight checked
  8. Get support if you are a smoker
  9. Receive care planning to meet your individual needs
  10. Attend an education course to help you understand and manage your diabetes
  11. Receive care from a specialist paediatric team if you are a child or young person
  12. Receive high quality care if admitted to hospital
  13. Get information and specialist care if you are planning to have a baby
  14. See specialist diabetes healthcare professionals to help you manage your diabetes
  15. Get emotional and psychological support

Around 80% of the budget spent on treating diabetes in the UK goes on sorting out complications. Just think about that for a moment. 80p out of every pound. All the cost of medications, test strips and fancy diabetes gadgetry are utterly Hobbit-like when set against the monstrous scale of the cost of helping those for whom things have not worked out so well.

The vast majority (around 90%) of people living with either type 1 or type 2 diabetes have never been offered or have never attended a structured education course which could give them the skills to live better with diabetes every day.

Way less than half of the people living with Type 1 in the UK are getting the checks that they should every year. The actual figure, according to the National Diabetes Audit is just over 40%.

People are not finding out early enough that their eyes, kidneys or nerves are starting to show a little wear and tear. It is never too late to make improvements to your own diabetes management, or get the right treatment and support. Many, many people have used information from their 15 Essential Healthcare Checks to dodge the hammer-blow and nimbly dart out of reach of the troll's swing. Early warnings are just that. Improve your diabetes management and in many cases those early signs can be stopped in their tracks - sometimes they can disappear altogether.

If you live with diabetes, or know someone who does - make sure you read that list and make those appointments. Being told, 'It's all looking fine' does not make these visits a complete waste of time. It's an important annual opportunity to make sure you are staying one step ahead of the trolls.

See also: 15 checks, diabetes audits and prawns

Posted by on Wednesday, 20 May 2015

Gimme 5 - a new hypo strategy

It is. Is it? Isn't it?
Here is a conversation I have had at pretty much every annual review I have ever had for my diabetes:

HCP: How many hypos are you having?
Me: Well... erm... that kinda depends on what you mean
HCP: What?
Me: On how you define 'hypo'. What you mean by it. What number or experience you use.
HCP: Erm... well... I... er...

You might think that it is a fairly simple question. Anything below 4.0mmol/L right? "Four is the floor" and all that.

Except that in the US it would be below 70mg/dl (3.9mmol/L) not below 72mg/dl (4.0mmol/L) - so suddenly there are a whole bunch of results that don't 'count' if you live over the pond just to make the US version a round number.

The matter is even more complicated by inherent meter inaccuracy. I have to say I trust my current Contour Next USB more than any other I have ever owned. Previously if I wasn't sure of a result I would immediately retest and could get a new result perhaps a mmol/L or two different in either direction. With my Contour Next USB, double checked results are more often than not *exactly* the same, or at most within a few decimal places. But this aside, ALL blood glucose meters are only legally required to work to within +/- 20% of a lab value. As I have pointed out before this can mean that your 4.0 (72) reads anywhere between 3.2 (58) and 4.8 (86). So which of those sub-4s would you count if some of them might be over 4 with a different strip or from a different finger? I can't spend my whole life (and all my test strips) triple-checking everything and taking the mean value...

But even if we set aside the imperfections in the data feed and assume that all the numbers are the actual numbers, it still isn't that simple. Particularly if, like me, you have ever experienced a degree of hypoglycaemia unawareness. Because you, dear non-diabetic reader, could be quite happily pottering along right now with a plamsa glucose concentration of 3.8mmol/L and no warning signs, and no one would care a hoot. For me and rest of the pancreatically-challenged horde though... things are different. If we don't get clanging warning signs at every 3.9 there is a breed of healthcare professional that will believe you are a danger to yourself, society at large and will be lucky to make it down the stairs without collapsing into a coma.

Don't get me wrong. I do not underestimate the severity of Impaired Awareness of Hypoglycaemia. Far from it. I have lived with it, and through it, and (particularly if associated with Severe Hypoglycaemia as it so often is) it is miserable for you, your family and everyone you are close to.

But if people without diabetes can be 3.8 and not hypo... then... well... er... Are we pancreas impersonators supposed to perform better than a fully-functioning non-D?!

Added to this - some guidance describes treating levels below 4.0mmol/L to avoid hypoglycaemia. From this standpoint 3.x-3.9mmol/L could be seen as offering a sort of 'buffer zone', a tiny whisker of breathing room before things might start getting messy. But 3.what?

This study suggests that most non-diabetic people will begin to experience some early warning signs in the region of 3.6-3.9mmol/L

While this study puts the level at which the brain begins to malfunction as 3.0mmol/L. And this, after all, is what we are actually trying to avoid at the end of the day.

But you don't have to have lived with diabetes for very long before you realise that the more 3.7's you have, the harder they are to spot. And the more likely you are to start getting 3.2s. And so on... and so on...


Plus ca change
And so it goes... I have some sub-4s, I try to have fewer. Some months it works. Other months it doesn't. Sometimes people are advised to 'run a bit higher' for a while (though there is little evidence that this relaxing of targets actually works to be honest). And I'm always caught by not really knowing how important a handful of readings between 3.5 and 4.0mmol/L are in the absence of Severe Hypoglycaemia and with relatively reliable warning signs that usually kick-in around 3.0-3.5mmol/L. And yet some clinic appointments make me feel like an abject failure for missing a 3.8 here or there. And the lower your HbA1c, the more twitchy your clinic tends to be about how many 'hypos' you are having - the very people who will be asked about your fitness to drive, for example. It's a quandary.


New strategy... Gimme 5
So as of this month, I have decided to try something new. I have been treating 5.0 as if it were 4.0. Any reading below 5.0 I have been treating as if hypo with fast-acting carbs (I have never been a follow-up carb person). And anything below 5.5 I have been treating more moderately with a smaller amount of fast carbs and/or a short sharp TBR - say 30-60 minutes dropped down to 10%.

Results so far are fairly encouraging. As an approach it certainly hasn't resulted in the general hike in BG averages that I have seen previously when trying to get rid of a few more of those pesky dips below 4. Hard to be sure and I'd have to run the system for a few more months but my best guess is that I might have lost perhaps 25-40% of sub-4 readings so far.

What do you think? Am I the only one who drives themselves nuts over this? How do you go about hypo-busting?

Posted by on Sunday, 19 April 2015

Diabetes breakups

I'm sorry. I wish it hadn't come to this, but I'm afraid it's over between us.

I don't know why you are looking so surprised - you must have known this was coming after how things have been between us over the last few weeks.

We've been inseparable for so long now. Hardly a day has gone by in the last 5 years when I've been apart from you. All those times we've shared. All those adventures. All those scrapes we have got through together. And now it's come to this.

I know the polite thing to say is that this is down to me, but we both know that isn't the case here. It's not me, it's you. You've changed - and not in a good way. It's not just me that thinks so. Our friends have noticed the change in you too. And I'm afraid I can't go on living with you like this. You have let me down, when I needed you most. And then when I forgave you and tried to go on as before - you just went and let me down again, and again. And now I hardly even recognise you. I just don't know who you are any more.

Maybe you are looking for someone else? Someone with deeper pockets maybe? I hope you'll find someone for your future, but I know for certain that it isn't me - not while you are behaving like this.

And it breaks my heart, because we have been in this together for so long. Perhaps I came to rely on you too much? There were times when I thought I could accomplish anything as long as you were by my side. But now? Now I'm just waiting to be let down. Waiting to be abandoned. I can't trust you - and I can't be with someone that I can't trust.

I'm not angry I'm disappointed. And angry.

So I'm sorry, but I've found someone else.


For those who have *no* idea what I am going on about... after many years of faithful togetherness it seems that Fruit Pastilles (my pocket-based hypo remedy of choice) have changed their formulation. Over the last fortnight I've had to ditch large parts of several packets which became an unusable gooey mess covered in irremovable tinfoil, occasionally plastered to the inside of my jeans pocket. Nice. The worst discovery was during a training run for my forthcoming 10km road race in support of INPUT. Feeling a bit low and discovering half the remaining pastilles rendered useless 5km from home put me in a pretty tight spot for my run back.