Posted by on Sunday, 30 December 2018

Diabetes and grief

I could have redrawn this, but I copied it from this article.
Rather than hastily cobble together a half-baked 'review of the year' for the past 12 months, I've decided to write something on a topic which is more or less constantly filling all of our minds in this house at the moment. I suspect this is more of a catharsis for me, than of any use to anyone else, but writing often helps me process things, so here it is.

I've often come across the concept of a relationship between diabetes (or any long term condition) and grief. I was born in the year Elizabeth Kubler-Ross first modelled the 5 stages of grief - Denial, Anger, Bargaining, Depression, Acceptance. Anyone who has received a diagnosis of type 1 diabetes is likely to recognise all or some of those phases as you grieve for the loss of your health, perhaps for the loss of the life or career choices you once hoped for. My own experience of grieving over my type 1 diabetes is that it has actually rarely felt like grief at all. And yet I can certainly see those stages coming in unpredictable waves over the years. Not in the neat diagrammatic 'first you get this... then you move on to this...' way sometimes illustrated, but in more of a cyclic ebb and flow. Peaks and valleys. Dark and light. Some stages repeating and recurring, others barely registering.

I've lived with this 'diabetes grieving' for approaching 30 years, and once I'd seen the phases/stages model, I found it quite a helpful way to understand my erratic thinking from time to time. Over the past 12 months I've been very glad that I've had a bit of a practise at this grieving lark.

Jane
Almost exactly 12 months ago, between Christmas and New Year, Jane (my wife of 24 years and occasional co-author of this blog) fell down the stairs. She went to the Doctor's when the pain in her back wasn't seeming to get better and, along with the long queue of people who go-to-the-Dr-with-a-bad-back, went through the standard sequence of stronger painkillers, x-rays, scans, more painkillers etc. A different locum every time (at least initially), and each appointment a few weeks apart.

It never was her back.

One collapsed lung, significant weight loss and a "Hmmmm, that doesn't look right" about her pancreas later and she was diagnosed with an aggressive, terminal, pancreatic cancer in May 2018.

I first met Jane in 1993. She was working part time in a framing shop just down the road from where I was working at the time, while she was simultaneously building a career as an artist, illustrator, dressmaker and doing a little soft-furnishing on the side. She remembered me because the mount I asked for was a peculiar size - I had mis-measured it - and as if heralding our future together she gave me exactly what I asked for, before gently letting me know I’d got it wrong and sorting it out for me.

I kept popping back to the shop hoping to bump into her. Browsing the greetings cards by the door, then losing my bottle. Eventually after buying more cards than anyone could sensibly need, I plucked up enough courage to ask Jane for lunch at Pierre Victoire. We had lamb.

We went to the Odeon and saw, ‘In the Line of Fire’. Clint Eastwood, John Malkovitch and just enough exploding helicopters for a perfect romantic evening. And then we walked and talked all around the city centre and harbourside long into the night. I think I knew right then. Perhaps we both did. About two weeks later we had a faltering conversation in the car about where we thought this might be going. We realised, of course, that any talk of engagement and weddings after so short a time would seem ridiculous to everyone else. So we vowed not to speak of it again and to review how we felt in 6 months.

6 months later we got engaged and were married in November 1994.

The way Jane responded to her diagnosis and coped with the following 6 brutal months was nothing short of extraordinary. She went from "come in to find out the results of the scan" to "palliative care" in the space of about 6 minutes. She amazed me. Heroic, feisty, hilarious, determined, positive and with a level of empathy that I cannot imagine many others on the planet would have possessed. We had an amazing last summer together as a family. We wept, we laughed, we talked, we shared, we planned. We ate lots and lots of cake. We were utterly humbled by the outpouring of love and support from friends, neighbours, family and professionals around us.

Jane died in October 2018, and Christmas day this year marked exactly 2 months to the day since she died.

Jane had always joked that she'd 'go first'. And the irony of her managing to do it with something pancreas-related was not lost on either of us. We laughed. There was a lot of pitch-black humour in those last months.

The immediate aftermath of a death seems to involve an extraordinary amount of admin. Honestly it just keeps rolling in. Quite how some people can navigate through those hoops while also dealing with the immediacy of the loss is beyond me. It does form a half-welcome distraction at times, but really - I cannot believe that this is the best way to handle and process a situation that is affecting hundreds of families today (whichever day you are reading this post). People who might have learning difficulties or other challenges to juggle alongside the need to suddenly make dozens of appointments and complete rafts of paperwork.

And the initial weeks, turn into a month. And actually, we'd all begun our grieving with the terminal diagnosis 6 months earlier.

Almost inevitably, people have been asking me, "How are you doing" quite a bit. It's not unwelcome, but it's also not always an easy question to answer. Not always easy to say, or describe - or even understand yourself. I've come across various metaphors and illustrations of what grief is like that I've found helpful. Grief as a rollercoaster. Life growing around grief. Grief as a box-ball-and-button. And me being me, I've been trying to understand my experiences with an analogy of my own.

Original photo by Sam Howzit. Creative Commons 2.0
The Frozen River
I woke with this picture in my mind very clearly one morning. I'm not sure if it was left over from a dream, or arrived just at the moment of waking. I've thought about it often since. I am standing on the bank of a frozen river. The sun is shining, the river is vast and wide. I step out onto the surface. The sunlight catches the frozen surface glittering and shining. As I cautiously take more steps I am aware that beneath me there is a dark broiling current, swirling and eddying. At any moment I might fall through and be plunged into the inescapable blackness. As I shift weight stepping forward the ice is creaking and giving off little pings and ringing chimes. Utterly beautiful, but they only serve as a reminder of the precariously fragile nature of what separates me from the churning depths below. I cannot go back to the shore I have left - I have to keep going. I cannot clearly make out the far bank ahead of me, though I know it must be there. The ice reaches out into seemingly infinite distance with no way of telling how far I must go. Sometimes the mist blows in and the ice beneath me feels so thin, so fragile that I can barely risk it. Other times it feels more sturdy, the sun cuts through and feels warm on my face, the sparkling chiming surface transcendently beautiful. I must keep going to get to the other side. Keep focussed on taking gentle step after gentle step. Trust that the surface will keep supporting my weight. Somewhere up ahead, even though I cannot see it, will be the far bank, and warmth, and safety. I just have to keep going.

Sadness and sorrow
I've always loved carefully chosen words (not that you could tell that from my barely coherent ramblings here!). Poetry, and especially song lyrics, that express deep truths with beautiful economy and precision. Really good advertising copywriting too. Saying a lot with very little.

I had an 'Ahhhhh! Yes that's it...' moment earlier this month when I realised that what I was feeling was sorrow and not sadness. Sadness has happened too, of course. Sometimes sharply intense. Other times just gently lapping at the edges of my mind. But for me sadness has a more fleeting, temporary quality. It is the stuff that comes in waves. Sorrow is deeper, further down in the geological centre of me. A seam of it running deep, underpinning everything. No matter how enjoyable and lively my days are, how much laughter and fun I am having, there is always the sorrow running underneath. Occasionally the seam of sorrow breaks up to the surface and emerges - obliterating everything else - before eventually receding back down to the depths.

Jane always said that life comes in chapters. And 2019 will see the kids and me gingerly embarking on a new phase. I am incredibly proud of the amazing, talented young people they already are, and are continuing to become. I am staggered by their gifts, their resilience, their abilities, and their nature. The next 12 months could see some amazing changes for us all as they both launch into whole new young-adult chapters, and I know that Jane could not have been more proud of them.

Here's to an amazing, fun-filled 2019 whatever you are planning, and whatever you have to face. And thank you to everyone who has helped and supported us as a family over the past year. It means more than we can say.

Posted by on Tuesday, 18 December 2018

Rage Bolus - a Christmas classic

Disney Pixar's Inside Out. One of my absolute favourite films.
I've seen a few things about rage boluses in recent months and it did that rare thing of making me think, "I should write a post about that".

I can't remember exactly when I first came across the term 'rage bolus', but I think it was quite soon after discovering of the power of peer support and shared experience. I am almost certain that it came from that most legengary of #DOC legends, Kerri Molone Sparling's Six Until Me, and I'm pretty sure that it was Kerri who came up with the phrase originally.

If you live with diabetes and use insulin, even if you've never heard it before, you will instantly know exactly what is meant by a rage bolus. It was phrase that made me go, "Aha! Yes!! I know that thing." Type 1 diabetes can be incredibly frustrating to live with. For all the illusion of 'diabetes maths', and there is no question that sometimes carb ratios and insulin sensitivity factors can and do work (some days / most of the time / once in a blue moon), it is also absolutely the case that there's a lot more going on than food + dose = reliable results. And when things go a bit off track you can feel that you have got it wrong (and sometimes you have!). A sense of personal failure. Feeling like an idiot. So frustrating. Other times you know that you have done all the things you are supposed to do (scrupulously counted carbs in a carefully chosen, healthy meal that you've eaten many times before with reliable results) and still your BG ends up in chaos. Doubly frustrating. Or you just decided to treat yourself (after all everyone else with their functioning pancreases and none of this to worry about were having a lovely time) and then you see it all coming back to slap you in the face, even though you tried your best to work it out. Triply frustrating.

Sometimes there are only so many small, carefully-calculated, properly-spaced correction doses you can try and wait grinding your teeth and stewing in double figures for hours (or days) willing your BGs to stop inexorably rising or stubbornly unmoved before you go OH FOR GOODNESS SAKE and whack in a big ole slosh of insulin to try to get things moving downwards.

And as we approach Christmas I am aware that we are heading into 'rage bolus' season. Meals are likely to be less predictable. Less easily guessed or measured. You may have a little sniffle, or be drinking sugary alcohol, be surrounded by endless nibbles, or be less active than usual, or exposed to any number of other factors that might make decent dose-guesswork much harder.

Let me just be perfectly clear about this - rage boluses are generally a terrible idea. They almost always result in hypoglycaemia, sometimes in a really nasty and stubborn and/or scary low. And crashing from one out of range BG to another at the other end of the scale is likely to make you feel even more frustrated, annoyed and difficult to live with.

So why do we do it to ourselves?

Because, frankly, sometimes it WORKS. And like an addicted gambler feeding endless coins into our BGs fixed-odds betting terminal we have reached the end of balanced and logical assessment of likely outcomes. Sometimes high BGs are the result of a significant underestimation of carbs. Or perhaps it's a dose that hasn't absorbed properly. There are circumstances where we are in 'insulin deficit' of a number of units. And where the food already eaten is still feeding glucose into the bloodstream, and where a dose isn't likely to reach maximum effect until an hour after you grit your teeth and go for it, there can be long, long hours between a measured, cautious correction dose and seeing any effect at all.

Repeatedly, I have heard respected diabetes clinicians suggest that one of the reasons that rage boluses are a bad idea is that taking more insulin doesn't make it act more quickly, it only makes you fall further in the end which leads to likely hypoglycaemia. I think it would be much easier to resist the rage bolus urge if this was actually true. The simple, demonstrable fact is that taking a larger BG correction does make it act faster to reduce high BGs. We know this because we see it happen. And to pretend that it doesn't really isn't going to help me in a consultation. If I take a 0.5u correction dose (as suggested by my pump or smart meter) then after a reasonably predictable onset time I will have a proportion of that 0.5u available to act on my errant BG. If I take a 5u correction, after the same onset time I will have much more circulating insulin available. It may not be exactly mathematically 10x as much, but it will be more. And If I've rage-bolused before and checked after 30 minutes, then an hour, an hour and a half... I will have seen this happen.

Rage boluses do reduce high BG faster.

It's just that they also add chaos onto more chaos.

Sometimes I will make this calculation in my head:

OK so I've currently got annoyingly high BG. I also have some insulin already on board. Along with that, I also have half a meal which I may (or may not) have hoplessly inaccurately estimated that is feeding more glucose in. Some of which will be accounted for by the dose that's already acting. Or possibly it won't. Solution? I'll dose a big ole slug of insulin in now to get things moving in the right direction over the next 2 hours, then depending on how things go I will eat some extra carbs later on to mop up the last bits of the dose.

I mean... what could possibly go wrong?

I once referred to this frustrated act-and-counteract ballet as uncertainty tennis (particularly where my guesses and second-guesses follow in double-quick time and everything overlaps far more quickly that it can possibly have had enough time to actually take effect).

Try to give yourself some head-space this Christmas. Give yourself a little more leeway. Perfection is an illusion. BG perfection doubly so. No one wants to live with a grumpy pancreas-impersonater muttering and grumbling after every meal.

And if possible try to resist the rage bolus urge. Except for the times when it works perfectly and brings you back neatly into mid-range. I mean... those are just awesome! (and incredibly unlikely)

Posted by on Wednesday, 14 November 2018

Frestyle Libre available on prescription. Again.

It's with a certain sense of deja-vu that I mark World Diabetes Day this year with the news that Abbott's Freestyle Libre flash glucose monitor will become available to people with type 1 diabetes in the UK on prescription from April 2019. Cue inevitable Twitter meltdown.

Hang on... haven't we been here before?
Well yes. And no. You may remember me writing a post in September last year on this very subject.

Technically the Libre was made available on prescription on 1st November 2017, "subject to local healthcare economic approval". Prior to that 2017 announcement various Big Health and Diabetes Organisations (such as the Regional Medicines Optimisation Committee, NICE and a collaboration of Diabetes UK, ABCD, JDRF and INPUT) put together helpful documents, guidance and national position statements about what Libre was, who it might be useful for and the evidence to support its use.

What followed was an unholy scrabble of various different CCGs across the UK who either adopted Libre under RMOC criteria, published their own set of rules (which often had bizarre additional requirements that seemed to bear no relation to Libre and its use, such as blood pressure results) or denied access entirely saying that there wasn't enough evidence, or that they didn't like the colour of the packaging or any number of "Whatever we do, let's kick this can as far down the road as we can manage" strategies. And all the while those CCGs in the 'no' camp had meetings and re-reviewed the evidence that had already helpfully been reviewed for them, and invested time (and presumably money) into reinventing all the wheels they could see.

So what emerged was variously described as a 'postcode lottery', 'Libre lotto' and 'bloomin outrage' and across the country people living in the (at the last count) 51 CCGs to have said a big fat NO to prescribing Libre got together and organised themselves to petition, badger and generally make a fuss about it.

Meanwhile, in areas where Libre was more freely prescribed, the early results were overwhelmingly positive. HbA1c's tumbled, and importantly positive effects were seen at all starting points, with significant improvements being seen in those who hardly checked BG at all as well as those regularly checking 6-8 times every day.


And the results didn't begin to tail off after an initial positive surge either. As more data were added, the improvements were sustained and improved further.

Meanwhile the irrepressible, unstoppable force that is Dr Partha Kar was not for taking 'no' for an answer. If the evidence was sufficient for area A, why was it deemed insufficient for area B just down the road? Gentle pressure was applied with an NHS England behatted sledgehammer and a smile. Additionally everyone's second favourite Libre-prescribing-data-muncher Nick Cahm quickly became errant CCG's worst nightmare as he quietly and eloquently sifted through mountains of information to show how utterly nonsensical some of these local decisions were. And Diabetes UK weighed in to support and rally local people in their #fightforflash. The CCGs didn't stand a chance really.

And so today, the biggest of NHS bigwigs Simon Stevens joined in to announce that Libre will be available nationwide under RMOC guidance from April 2019:

“As the NHS prepares to put digital health and technology at the heart of our long term plan for the future, NHS England is taking important action so that regardless of where you live, if you’re a patient with Type 1 diabetes you can reap the benefits of this life improving technology.”

So who exactly will have access?
As far as I am aware this is the guidance that will be used to identify appropriate people with diabetes who will benefit from Freestyle Libre going forward:

It is recommended that Freestyle Libre® should only be used for people with Type 1 diabetes, aged four and above, attending specialist Type 1 care using multiple daily injections or insulin pump therapy, who have been assessed by the specialist clinician and deemed to meet one or more of the following:

  1. Patients who undertake intensive monitoring >8 times daily
  2. Those who meet the current NICE criteria for insulin pump therapy (HbA1c >8.5% (69.4mmol/mol) or disabling hypoglycemia as described in NICE TA151) where a successful trial of FreeStyle Libre® may avoid the need for pump therapy.
  3. Those who have recently developed impaired awareness of hypoglycaemia. It is noted that for persistent hypoglycaemia unawareness, NICE recommend continuous glucose monitoring with alarms and Freestyle Libre does currently not have that function.
  4. Frequent admissions (>2 per year) with DKA or hypoglycaemia.
  5. Those who require third parties to carry out monitoring and where conventional blood testing is not possible. In addition, all patients (or carers) must be willing to undertake training in the use of Freestyle Libre® and commit to ongoing regular follow-up and monitoring (including remote follow-up where this is offered). Adjunct blood testing strips should be prescribed according to locally agreed best value guidelines with an expectation that demand/frequency of supply will be reduced.

It will be very interesting to see how this works in practice, and in particular whether this framework allows widespread adoption of Libre2 when that launches in the UK (at the same price as Libre1 apparently), which gives Libre users the option of alerts to prompt scanning when BG rises or falls to particular limits.

Roll on April!

Posted by on Saturday, 13 October 2018

European Launch of the MiniMed 670G - Switzerland

The Medtronic Mothership poised for takeoff
I was chuffed to be invited to join bloggers and diabetes advocates from Belgium, the Netherlands, Switzerland, Sweden, Finland, the UK and other places I have almost certainly forgotten for the Medtronic Diabetes Community Exchange 2018 at Medtronic's European HQ in Tolochenaz, Switzerland.

I was particularly pleased to be invited to walk in the footsteps of the legendary Alison and Tim from Shoot Up or Put Up and to needlessly and completely unnecessarily rekindle the rumours that Medtronic have an entire department dedicated to the drowning of puppies in their relentless pursuit of evil. Rumours which are, of course, entirely untrue. And completely made up by Tim. Or are they?

We arrived on Thursday afternoon and were swiftly transported to the impossibly quaint, beautiful and strangely fragrant 'Chalet Suisse' restaurant where we were treated to a slap-up meal composed of cold meats, pickles and industrial quanities of gently bubbling cheese into which we enthusiastically dunked hunks of white bread. Fluffy white bread, a vat of cheese and a little alcohol. What easier meal could there possibly be for a tableful of pancreas impersonators to contend with? As inevitably happens at these events, people with diabetes quickly feel at ease with each other and conversation flowed to a burbling soundtrack of bleeps and buzzes from various bits of diabetes kit. It was a very lovely evening. Thanks Medtronic!

All those friendly faces and barely a functioning pancreas between them.
European Launch of the MM670G
It was perhaps no surprise that Medtronic had invited us during this particular week - in which their latest hybrid closed-loop insulin pump system launched in Europe. The launch begins with the UK, the Netherlands, Belgium, Sweden, Italy and Slovenia as of 10th October, with Finland and Denmark following hot on our heels next week. I have been using Medtronic pumps for the past 7 years or so, but others around the table used other brands, pods or MDI injections.

Inevitable device timeline pic. No future dates, naturally.
The MiniMed 670G launched in the US in June 2017, and the version launching in Europe is almost exactly the same. If you are new to the snazzy concept of 'sensor augmented pumps' (and why wouldn't you be?) the basic idea is that you combine an insulin pump and CGM (continuous glucose monitor) into one device. At it's simplest, the pump acts as a receiver for the sensor glucose and allows display of current glucose values and can alert the wearer if levels are rising, falling or generally going off kilter. The really clever stuff starts to happen though, when the pump uses an algorithm to act independently on the basis of the received sensor glucose values. On my MM640G I allow Threepio to silently and automatically take action and cut off my basal insulin if my BG is predicted to fall below 3.9 within 30 minutes. This has saved me countless low level hypos whenever I have been able to afford a sensor. If you're interested in the details there's a little animation explaining how this works here.

The MiniMed 670G adds extra oomph to the mix by also having the ability to increase basal insulin where sensor glucose is rising. Gary Scheiner, who wrote 'Think Like a Pancreas' wrote a review of the MM670G after it launched in the US which has a good deal of detail if you are interested, but which also prompted several questions for me.

What I thought I knew
The MiniMed 670G uses two main targets, neither of which can be changed by the user. Overall it aims to direct your glucose value towards 120mg/dl (6.6mmol/L). Where it is taking corrective action for elevated sensor glucose, it aims towards a target of 150mg/dl (8.3mmol/L). These were the launch values in the US, and will be exactly the same for the UK version.

A number of options that experienced pump users might expect to be able to use (temporary basal rates, dual (combo) wave, and square (extended) wave boluses are unavailable in auto mode.

From what I can tell, things like differing basal patterns for weekdays/weekends do not apply in auto mode either.  Nor can you alert the system that you are about to undertake exercise in advance.

In fact there seems to be very little you can adjust and tweak in auto mode aside from insulin:carbohydrate ratios and Duration of Insulin Action. If you are planning to exercise you can temporarily set the pump to aim for the higher target, but that's about it.

All of this may fill you with dread and impending frustration. Or it may elate you with gratitude of being able to hand over responsibility almost entirely.

Users can, of course, use the pump in 'manual' mode whenever they wish. This would give them effectively the same choices/options as the MM640G, but doesn't take advantage of the additional automation on offer.

Is there anything else like this?
No. Well... not regulated, approved and currently commercially available no. But of course the MM670G is not being released into a vacuum. There are other emerging sensor augmented pumps (eg Tandem T:slim) which incorporate predictive low glucose suspend (rather like the MM640G). Alongside which there is a growing community of enthusiastic loopers who have decided #wearenotwaiting and use a variety of homespun, and significantly more tweakable, options. Of course not everyone has the confidence to build their own diabetes device - I am assured that these are no longer cobbled together from bits of string and paperclips, but nevertheless still do require careful configuration, software and in some cases additional DIY hardware. Additionally many loop solutions currently require older out of warranty insulin pumps. This may not be the case for long, nor might OpenAPS and Loop's unregulated status continue, now that Tidepool have committed to developing Loop as a supported, regulated app available for users on a range of in-warranty devices.

What I found out
It's fair to say that I was very enthusiastic about the prospect of the MiniMed 670G about a year ago. But things are moving so fast these days, that this is already beginning to feel like an older model. And as an inveterate fiddler the idea of so few settings being settable by me is a bit... well... unsettling.

What I found very interesting, was the observations Medtronic have made from 3.2 million days of data since its launch in the US. Essentially, they suggest the MiniMed 670G tends to work better in people who don't fiddle and try to come up with their own ways of working around not being able to alter settings. Often people who are new to an insulin pump, who have not already built up a library of hacks, tricks and strategies to bully their pump into doing what they want it to. People who simply give the MM670G the information it requests and heed the alarms, who keep the sensors well calibrated, and who count and supply carb information of meals and then let the pump do its thing, are the ones who tend to get the better results.

I am aware from my own relentless tweakery that at least some of it is frequently down to constant changes in insulin sensitivity and insulin need (and working around times when my pump settings aren't quite right).  I suspect that one of the main reasons behind the lack of tweakability on the MM670G is the closely guarded algorithm. This updates up to 17 different parameters at midnight every single day, based on the previous 24 hour's worth of data along with a rolling average of the previous 5-6 days. Essentially the pump is continually adapting and tailoring itself to you. So those unmovable targets may not seem to be what you have chosen, but the intention of the MiniMed 670G is to keep your BGs as stable as possible to increase your time in range, to reduce glucose variability and to reduce hypoglycaemia to almost nothing. At least... that's the idea. Medtronic are quite upfront that this is the first iteration of this algorithm, based on dozens and dozens of research papers, and that it is intentionally cautious. Other more 'aggressive' versions with greater user control are being strongly hinted at.

A consequence of the 'machine learning' of the pump adapting to you as an individual though, is that it does take a few days of sensor wear for auto mode to become available (48 hours from midnight following sensor start). I'm not exactly sure how that would impact occasional-sensor-users like me, who cannot afford full-time coverage, but it's clear that only a portion of each sensor for me would be auto-able. In theory sensors can be restarted just as they can on earlier enlite-using pumps (sorry Medtronic!), but this newer pump uses Guardian 3 sensor technology, and because the MiniMed 670G has more control over insulin delivery it makes more checks that the sensor data being received is of high enough quality. Without having used it, it's impossible to tell whether it would get twitchy and drop restarted sensors earlier than I am used to.

Case study
It was a delight to meet Rob Howe a Texan ex-pro basketball player and MiniMed 670G user. Tall, slim, athletic, and with that easy, effortless charm that seems to be the gift of so many Americans. He shared his experiences and took part in a Facebook Live broadcast after which we were able to ask more questions.

Rob was an enthusiastic MM670G poster-boy, and having moved from MDI/CGM to an insulin pump with an impressive HbA1c of around 6.2% (44mmol/mol) he was obviously no slouch when it comes to BG juggling.

When asked about changes he had noticed during his year on the pump, one of the most striking was that his regular weekly order of two 1 gallon containers of orange juice he kept in his fridge to treat overnight hypos started to go off before he could use them. They simply weren't needed any more. As a basketball player and all around active type, he also seems to have put the MM670G through its paces exercise-wise, from high intensity BG boosting sprints/weights to longer distance runs of 6-10 miles. Rob was able to keep the pump connected throughout exercise and allowed it to manage his activity, with great success it would seem. Initially Rob said his HbA1c rose a little, perhaps up to the mid 6's (48mmol/mol), but seems to have settled back to the low 6s since. So while the fixed settings on the MM670G algorigthm seem to target an HbA1c of approx 6.7% (50mmol/mol), it looks as though, once again, Your Diabetes May Vary.

What next?
It will be fascinating to see more accounts from real users 'in the wild' across Europe. Several people in the group were about to start with MM670G in November. There was an extended discussion during the end of the afternoon where bloggers raised concerns and questions. There are plans to subtly alter the materials and structure of the MM6xx cases to help avoid those battery compartment cracks (which in turn will mean Medtronic don't have to replace those pumps), plus small alterations to clips, and clip rails. Medtronic are planning a version of the MiniMed 670G which will be able to communicate to phone via Bluetooth. It is notoriously difficult to predict how long it might take to get devices through regulatory approval (and goodness knows what additional chaos Brexit might add to the mix for us in the UK), but reading between the carefully veiled lines it seemed that they were hoping it might be in the next year or two. No promises etc etc. Perhaps even more interestingly... this version of the MM6xx series would have the ability to receive updated software/firmware after distribution. This is something that Medtronic have been inching towards for some time, and could significantly accelerate the takeup of new and better pump versions where the hardware is essentially identical, and it is only the algorithm which needs updating.

One thing is for certain. The rate of change in diabetes devices doesn't look to be slowing down any time soon.

Disclaimer. Medtronic Diabetes invited me to attend the MiniMed 670G European launch in Switzerland. They paid for my economy travel, transfers, accommodation, the welcome meal and lunch at their offices. I wasn't asked or paid to write this blog post or any other social media posts connected to the event. They also included a nifty little Medtronic branded battery power pack thing in a 'welcome' bag. Oh and a pen too.

Posted by on Friday, 5 October 2018

Fight For Flash in Bristol - Diabetes UK

The last remaining island of 'NO!' in the South West
It was great to get together with 30 or so people with diabetes and DUK folks last night in Bristol to consider how to challenge the local behemoth BNSSG CCG (Bristol, North Somerset, South Gloucestershire) to rethink its current 'flat no' position on prescription of Freestyle Libre in the city and surrounds of Bristol.

The event was organised by local legend and all round good egg Sandra Tweddell, who works and campaigns tirelessly to improve the lives, opportunities and experiences of PWD. Sandra called on the wonderful folks from the South West office of Diabetes UK who set up and supported the event.

Bristol's expansive CCG extends to areas around the city, and depending on which of the maps I found online are the most up to date is either one of the last or absolutely the last CCG in the South West to approve Freestyle Libre for prescription. The CCG initially dismissed Libre despite strong support from local specialist diabetes Consultants and DSNs who submitted a very strong case document outlining the potential benefits and cost savings, and national position statements from RMOC, Diabetes UK and the Association of British Clinical Diabetologists.

It is slightly irritating that Bristol suggests 'lack of evidence' as one of their main reasons for denying access to Libre since it was only this year that Bristol finally stopped supplying homeopathic treatment on the NHS. One of the last areas in the country to stop funding a treatment for which there appears to be absolutely no robust scientific evidence at all. Their other, and cynically I might suggest more pressing reason, is a substantial budget deficit. An eyewatering £58 million black (or possibly red?) hole in their finances which is inevitably applying significant pressure on their committees to not pay for anything they absolutely don't have to. It is also striking that while Bristol has internationally recognised specialists and expertise in diabetes research, some of the outcomes for treatment leave a lot to be desired - our record for lower limb amputations ranks as one of the worst in the country, for example. 80% of the UK entire budget spent on diabetes goes on treating complications of living with diabetes. When it goes wrong, we are very expensive to treat.

Dividing into small groups to brainstorm.
The event attracted a wide variety of people, from those diagnosed 40+ years ago, to others with less than 12 months of pancreas impersonation under their belts. After a brief introduction by Diabetes UK's Stefan, we gathered in small groups to brainstorm ideas on 3 different questions: Why do we think the CCG is denying Freestyle Libre in the area? What could we do to convince the CCG to change their minds? and Who could help the campaign?

An absolute torrent of ideas followed. The CCG's position seems fairly entrenched at present and revolves around a perceived lack of evidence, very real financial constraints and perhaps a lack of understanding of the nature of diabetes and how a piece of monitoring technology genuinely can help. Encouragingly discussions inside the CCG are still ongoing (perhaps they are already feeling the pressure) and Diabetes UK is meeting with them later this month. We seem surrounded by people who can help to remove the postcode lottery - several of whom are in positions of significant influence. Everyone's second favourite NHS England Associate National Clinical Director for Diabetes, Partha Kar is making 'gloves off' murmerings where CCGs are resisting Libre and maintaining the postcode lottery, while Keith Vaz and the APPG are mustering Parliamentary support.

As Libre has rolled out across the country and clinicians have begun to share the transformation in quality of life and hard-data outcomes that Libre is bringing to their patients, there surely will come a point where these can no longer be dismissed as merely 'anecdotal'. We were keen to find out exactly what was 'lacking' about the evidence that the CCG had already reviewed, and specifically what sort of evidence they were looking for.

It was great to see the enthusiasm in the room. A real desire to challenge the decision, to clarify the potential benefits to the correct population of PWD (and the potential cost-savings that can result both in the short, medium and long terms). Added to which the annoucement of a CE mark for Abbott's shiny new Libre2 at EASD this week which offers the option of alerts and alarms that many Libre users have been wanting for so long. And the current news seems to be that Libre2 sensors and its reader will cost exactly the same as Libre1.

The meeting closed with commitments to keep up the pressure, write to MPs, involve the local press, liaise with local HCPs and specialists. There are plans to gather more information and case studies of the benefits & cost savings other areas are experiencing (particularly where these include substantial short-term savings eg for hypoglycaemia and DKA admissions). There was also a genuine desire to try to get in front of the CCG in person and/or as a group. I may have accidentally suggested going mob-handed to the CCG AGM or a similar public meeting dressed as Jelly Babies. A Flashmob, if you will.

Watch this space.