Showing posts with label cgms. Show all posts
Showing posts with label cgms. Show all posts

Posted by on Saturday, 9 February 2019

T1D Rise of the Machines 2 - February 2019

Not the machines you are looking for... Public art near TechUK.
This time last week my mind was well and truly boggled by this point in the day by a torrent of information and the potential of shiny new things just around the corner (or already here). I was attending Type 1 Diabetes: Rise of the Machines #2 as a +1 of Kev Winchcombe, the #GBdoc's second favourite Nightscout Genius and holder of the Self Deprecating Diabetes Dad of the Year Award for the 9th consecutive year.

I'd heard a bit about the first Rise of the Machines last year and it sounded really interesting. The opportunity to go was actually very timely for me, because almost unbelievably this year sees the 4-year warranty expire on Threepio, my trusty and occasionally SmartGuarding MM640G insulin pump. As a result I am beginning to consider what options might present themselves for me to try next. The pace of change in diabetes technology seems so rapid at the moment that it's very hard to keep up with what has launched, versus what is being massively plugged but is still confined to the drawing board, versus what has technically launched but remains unavailable to anyone as no clinics either have them or are trained and equipped to dish them out. As an additional complication there are now various grassroots home grown combinations of different technologies that allow a degree of automation of insulin delivery (things like Loop, OpenAPS and AAPS). If you've never heard of any of this stuff prepare yourself for an impenetrable minefield of jargon, abbreviations and acronyms. Luckily for you Kev has put together a very handy dictionary of terms as part of T1resources.uk.

The main opportunities for improving T1 diabetes care are:
1. Improving the ability of a person to self-manage
2. Encouraging peer support
Everything else, whether technology, clinical, education or whatever falls into those categories

Partha Kar

After introductions from Ben Moody of TechUK and Dr Partha Kar, a packed programme of fascinating presentations followed. I took copious notes thinking I might write a detailed account, but in reality there was simply too much to cover here so you will be relieved to hear that you are only going to have to wade through what struck me as highlights.

Chris Bright
Chris Bright, semi-pro footballer and futsal supremo kicked things off with an engaging and inspiring PWD perspective. How different pieces of technology had formed part of his story with T1D, and supported him in exercise, activity and sport over the last 20 years, including the establishment of the Diabetes Football Community.

Next up were industry presentations by some familiar, and not-so-familiar names. Roche/Eversense, Abbott (Libre), Dexcom, then later Medtronic, Diabeloop and Tidepool. It was very interesting that many of the speakers from the companies lived with T1D themselves. The stories from the companies shared much in common. Technology is improving and continuing to improve. The more information (data) people have, generally the better they are able to manage their T1D. Some were able to talk about semi-automated insulin delivery and 'hybrid closed loops' which have either launched or are in the works.

Interoperability - buzz word of the day
One nice feature of the day was the round table discussions that took place after the presentation slots. The first of these involved the device manufacterer speakers who got something of a roasting from an audience which included several people who are actively trying to push the available technology to work harder, and are often frustrated by incompatibility and sandboxing where different devices are locked into their own predefined arrangements or are designed only to work within their own 'ecosystems'.

Interoperability (the ability of one device or technology to speak to a number of others) was certainly one of the buzz words of the day. The device manufacturers mentioned it, including the JDRF 'open protocol' iCGM standard which in development. But they were asked pointy questions about their 'bilateral agreements' for products in the works which will be designed to only work with devices from an agreed (and presumably negotiatied) partner manufacturer.

This is certainly well in evidence in the current market place and is all too often part of announcements about future tech. So Dexcom works with x and y, while Libre are collaborating with z, meanwhile Medtronic devices mostly try not to talk to any other devices if at all possible. While this almost certainly makes sense from a company perspective, it was a source of tangible frustration from users who might find a more open mix-and-match arrangement much more empowering.

The company speakers were clearly a bit nervy and uncomfortable committing to anything, preferring warm noises about 'taking steps' and 'working towards'. Abbott's decision to encrypt the data from its new Libre2 raised quite a few eyebrows, and when the explanation offered was that it was 'for safety reasons' one audience member described such a notion as abhorrent, "It's MY data! Give it to me."

The presentations by Medtronic, Diabeloop and Tidepool also shared many similar themes. Semi-automation of insulin delivery by smart systems that learn and continually adapt to the user's insulin needs as they ebb and flow. CGM data used to make minute-by-minute adjustments to reduce risk and severity of both hypos and highs, with the user only really needing to input carb count estimates for meals. All of these systems using their own algorithms and set-ups to attempt to increase the two emerging holy grails of T1 management 'time in range' and 'quality of life'. A technology which is both extremely easy to use day to day, but which gives improved outcomes. It was fascinating to hear the few snippets of detail that were sprinkled into the presentations - as always, I suspect the devil would be in the details, and whether or not it was possible to make any of these systems adapt to your own diabetes quirks. Tidepool's significant ongoing work to get a version of the 'open source' APS code approved for use by the FDA is very exciting - initially they appear to be partnering Omnipod as a delivery system. As for Diabeloop - the large Brexit-shaped elephant in the room was acknowledged in the subsequent discussion as they will not be able to launch in all European countries at once, and we could find ourselves rather on the back burner.

3 of the best
Clinical research and HCP perspective was offered in a round-table discussion jointly chaired by Diabetes UK and JDRF. Roman Hovorka (Cambridge), Pratik Choudhary (Kings College) and Lala Leelarathne (Manchester) shared their views on the current state of diabetes research and ongoing clinical trials from Loop and APS, to islet cell transplantation and encapsulation. The significant pace of change was clearly evident. In general the move from fingersticks to more continuous data and thereafter towards more automated insulin delivery. One of the challenges ahead would be to improve access to the emerging technologies and make that access more equitable. Additionally the challenges of accurately recording and monitoring 'quality of life' in health economic terms would become increasingly important in the future. Technology that you cannot access is little use. As is technology that is so onerous to use that it makes life miserable.

A brief break for a slightly delayed lunch allowed us all to catch up and compare notes from the morning's sessions.

Unfortunately I was not able to stay for the very last session of the day, but I was able to catch the first session after lunch which involved an overview of the currently available open source options chaired by Tim Street. One of the most emotionally charged and powerful moments of the day was presented by Jacob and his mum who had struggled through the required self-build steps in order to give her sporty teenage son the option to use a closed loop insulin pump. The brief video of Jacob's birthday morning and the look on his face where he unwrapped a box containing pump, reservoir, set, Android phone and CGM sensor caused more than one person in the room to wonder if it hadn't perhaps just got very dusty in there. Jacob's mum shared that it had been on leaving the first T1DRoM conference a year before that they had decided to take the plunge.

HBA1c graph showing the moment James starting with AAPS
James Woodman's encouraging presentation detailing his own journey towards looping left many people wondering if looping might be right for them too. While acknowledging that it looks scary and formidable from the outside, both of these stories had at their heart the sense that, "If I can do it, so can you". In James's opinion, the barrier is less about technical difficulty and more about self belief. And also, I would suggest, in securing the components and consumables needed to run the various systems.

All in all it was a very interesting day, and certainly gave me a lot to think about between now and December. But I will save those ponderings for another time.

If you'd like to watch the presentations, a video of the day has been posted on YouTube here.

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.

Posted by on Saturday, 30 December 2017

CGM, diabetes time travel, and lessons learned from go-karting

Image by 'aurorasognatrice' used under cc.
2017 is hurtling to a close, and despite my giddy optimism about having 'loads of time' over the festive break to do all sorts of things that I don't generally get around to, the days have passed in a blur of hopelessly guestimated carbs, fun, friends, family and alcoholic excess. Consequently I am once again hastily cobbling together a round-up of the year type post - you lucky lot.

Almost exactly 12 months ago I was placing my order for a transmitter and first box of sensors for my MM640G insulin pump. I'd trialled the system over the summer of 2015, and I have always opted for Medtronic pumps with the vague notion of possibly, some day, self-funding CGM - but this was the first time our family finances had permitted it. I'd been using Freestyle Libre sensors intermittently for a few years (which you can use sporadically without the additional £500 for a transmitter), so I was interested to see how occasional SmartGuard coverage worked out for me.

In the end 2017 turns out to have been by far my most sensor-filled year. I was invited to trial Medtronic's Guardian Connect in April, and was unexpectedly and very generously gifted some short-dated sensors by someone who was switching systems and could no longer use them.

I always try to get the maximum use out of every self-funded sensor I insert, and I am fortunate to be able to restart almost all of them for at least another 6 days while retaining good performance. This almost halves the cost - or more accurately for me, doubles the sensor coverage. I had hoped to spread 10 'stretched' sensors (approx £500-worth) across the year to give me somewhat less than 50% coverage, but in the end, have been able to use them continually for quite a number of months which has been a very interesting contrast to my usual pancreas impersonation guesswork. It's interesting to reflect on the changes I've noticed myself making to day-to-day management decisions, and how it has felt as an experience. Here are a few basics:
  • On the whole it has felt far easier to live with diabetes this year.
  • I've not done any complex analysis of BG results, but my basic monthly spreadsheet analysis (nerd alert) shows significantly better results.
  • My A1c has fallen by 7mmol/mol (0.5%) and my hypoglycaemia has dropped significantly
  • Sustained reduction in hypoglycaemia has really improved the reliability and timing of my warning signs.
  • For the most part I seem to be operating with around 80-85% of results in range (4-9mmol/L) - even over Christmas. This is ridiculous.
  • On average I've only been getting 1-2% of results below 3.9mmol/L, nocturnal hypoglycaemia has been almost completely eradicated and I am having days and sometimes weeks at a time with all but no readings below 4.0.
  • These are not results I can achieve without continuous data, not matter how hard I try.
  • Even with the benefit of Freestyle Libre these are results I find it impossible to achieve. The alarms of full CGM provide me with significant added benefit, especially for catching lows.
  • Occasionally life with CGM has been rage-inducingly frustrating, and alarms have sometimes driven me to distraction.
  • I've had a few duff sensors and made some very poor choices based on inaccurate sensor data.
  • Additionally, SmartGuard is a bit of a liability with an inaccurate or under-performing sensor, sometimes sending me into double figures with a cancelled basal (and sometimes half of a slowly-delivered bolus!) when I would have been fine if left well alone.
  • SmartGuard is amazing for me, but very often I can't resist overruling it, ending it early and/or adding some carbs. Sometime this works better, sometimes I suspect I create more problems for myself than is strictly necessary 
  • Additional data is a significant help to me day-to-day. I've come to rely on it and feel quite lost without it, but there are times when some of the subtle details of life with CGM have created their own challenges - which leads me to...
CGM and diabetes time travel
I've always been one for a thinly stretched analogy. I can't help myself. There are two coming up... You have been warned.

With absolutely no apologies for the shameless 'Christmas Dr Who' reference, I've also been thinking quite a lot this year about the diabetes time travel that you get involved in when tinkering with continuous data. I've considered this before in terms of the repeated half hours you can spend with diabetes waiting for various management decisions you have made to start working - periods of waiting which can seem interminable. With more time spent in CGM-land this year I've noticed additional time travelling shenanigans with the lag between 'sensor glucose' read via interstitial fluid and actual 'what's happening now' blood glucose information.

This was brought more keenly into focus with my brief dalliance with the faster-acting Fiasp. An insulin surrounded by feverish hype of very rapid action - which sadly for me rather failed to live up to expectations. But the promise of faster acting doses has occasionally made me feel the sluggishness of Novo-not-very-Rapid all the more keenly.

Mostly I find 'sensor lag' is barely noticeable, but with a whiff of irony, it is when my BG is on the low side and I'd really appreciate accurate information that this 'time travel' is most clearly noticed. Looking at a Libre or Enlite trace at those times, shows you what was happening something like 10 or 15 minutes ago. And any 'rapid' carbs you take to bring up those low levels, or turn-around a dip towards hypoglycaemia won't change your blood glucose for 10 or 15 minutes, and may not show on the eagerly-watched line for a further 10 or 15 minutes after that. More than enough time to double-treat, only to watch your levels climb into double figures a little while later.

In just the same way, when you have a trace to watch, there is a powerful urge to see a high-and-rising BG trace turn around. But correction doses for me are unlikely to show any noticeable effect before 60 minutes have passed (unless I add increased activity into the mix) - plus the mandatory 10-15 minutes, of course. And at each of these moments the graphed time-travel of results, and interminably upward direction of travel gives few clues as to when it is 'just about' to level, or begin to dive downwards. Threepio proudly suggests 'insulin on board' from which you might think I could make an educated guess (and sometimes I do luckily seem to drag some precious clues) but all too often I can find my IOB dwindling away to nothing, coping only with mis-guessed carbs, rather than the elevated BG I had hoped to squash. Other times I can bear it no longer and wade in with an additional dose, only to see my BG trace drop off a cliff and plunge downwards - awash with both insulin and various types of carbs. Which reminds me...

CGM and lessons learned from go-karting
I have only been go-karting three times I think. By which I mean the crash-helmeted-boiler-suited-whiff-of-2-stroke-engines style go-karting rather than the sliding-down-a-hill-in-a-fruit-box-with-pram-wheels-bolted-on style. I don't think it's an exaggeration to say that I'm absolutely terrible at it. I was reminded of my go-karting prowess when thinking about some of my... erm... more questionable diabetes decisions in response to a more frequent CGM data-feed. I suspect I am not the only one who has fallen foul of the double-dose and/or double-treat temptations - and for all the benefits of all that extra information, it is unmistakeably one of the risks.

The very first time I sat in a go kart, in a dimly lit, oily, industrial shed on the outskirts of our city, my driving style was essentially binary. The accelerator was either fully down or entirely untouched. The steering wheel locked at either edge or dead centre. Brakes were applied with sledgehammer-like gracelessness. As a result I kangarooed around the indoor circuit, making full use of the amply-supplied tyre walls and doughnuting my beleagured kart in furious circles. I proceeded at lightning speed from one collision to another and made very little effective progress around the twists and turns of the circuit.

This is pretty much the way I drive my diabetes when things are not going well. Frustrated by apparent lack of action of more reasonable measures I heftily over-correct with hugely inflated insulin doses or swigs of Lucozade. Lurching and stumbling from high to hypo and back again. Crash! Clonk! Screech! Everything becomes overblown and chaotic.

The second time I went karting was every bit as 'successful' as the first, but I had something of a lightbulb moment on the third occasion - which was at an outdoor circuit. For whatever reason, this time I adopted a more subtle approach. The accelerator was rapidly pressed full down at the start, then backed off in time for the first corner... rather than stamping the brakes I found myself making little feathered dabs. Steering was altogether more considered. Confidence grew. Speeds into tricky corners increased, a late firm braking followed by a hard turn of the wheel and full throttle at the mid-point of the turn allowed me to power-slide out of the corner. I was still making strong adjustments in some circumstances, but more often my choices were much more subtle, more measured.

This is what I see when my diabetes management is more successful. It is when I am able to make smaller adjustments that I do better. Multiple big overlapping doses and rapid-carb 'rescues' can leave me in a flat spin and going nowhere. Smaller tweaks, spaced further apart are often significantly more successful. I have found this to be a really interesting and important thing to think about when Threepio is merrily warbling away. Those alerts can seem equally frantic, but I need to pause and consider my position on the 'circuit' of my day. Can I just coast through this corner without stamping on the brakes (adding insulin) knowing that the turn of the wheel or dab on accelerator I've already made is enough, or is this the devious hairpin and do I need full-lock and firm braking before powering-on with additional carbs to make the turn.

In general terms, when I notice that I am oversteering and stamping on the brakes and accelerator of my diabetes managment, I am trying to remind myself to make a couple of slower laps and build up to speed again more gradually with more gentle adjustments.

Widening the access to continuous data?
I was delighted to be invited by Abbott to attend DxAmsterdam in July, and then in September the eagerly awaited news was released that Libre was to be placed on the NHS tariff and could theoretically be made available on prescription, subject to local CCG decision-making (and perhaos an emerging postcode lottery). Abbott's real-world data, shared in Amsterdam, backs up my own experience of access to continuous data - that the more information I have on which to base my guesswork, the better things tend to go for me.

Diabetes still has the capacity to be hugely annoying of course, but for me - more data certainly leads to better results. Continuous data is not without its challenges, and it will be vital for people living with diabetes to be given appropriate support and help in order to make best use of the information and avoid the pitfalls. Both in terms of their support from their clinic and also perhaps, those who have made the mistakes before them and can share their experiences. It will be really interesting to see what effect wider access to these technologies delivers as access to Freestyle Libre and CGM increases in the years to come.

It remains to be seen quite how much life my transmitter has left in it. They are warrantied for just 12 months. I will continue to use Enlite sensors for as long as I can, especially since my CCG seem rather reluctant to take any decisions on the finding of any kind of sensors for anyone - however great the need. I would imagine I would be very far down any list they eventually decided to draw up. After that I'm not sure if I will revert to Freestyle Libre, spring for another Guardian transmitter or take a continuous-data break.

Wishing you all a tip-top 2018. And thanks as always for reading.

Posted by on Wednesday, 13 September 2017

Libre available on NHS - big news and bigger caveats

Last night the rumour mill reached fever pitch as Non Disclosure Agreements were stretched to their very limits. And this morning the Twitterweb was a-buzz with the news that Abbott's Freestyle Libre flash glucose monitor is to become available on the NHS from 1st November*. JDRF issued this nifty press release and everyone's second-favourite cat-loving pyjama-wearing T1 ex-schoolteacher and all-round good egg, Adrian Long, was even glimpsed on Sky News in the early morning undertaking some top Libre punditry and sharing his love of 'Libs'.

* subject to local healthcare economic approval, CCG friendliness, moon in jupiter, blah blah blah.

Of course, no sooner had the long-awaited announcement been made than people began to get a bit sniffy about it, or unbelievably optimistic - depending on their frame of mind. Either Libres were about to be handed out to everyone immediately, whether they wanted them or not; or it was going to be a postcode lottery / the end of CGM funding / a complete disaster.

The official announcement from Abbott covers the whole of the UK, including Scotland, Wales and Northern Ireland. Freestyle Libre will be on the 'drug tariff'. Which means that it will be able to be prescribed, and reimbursed by the NHS.

BUT (and depending on your point of view this might be a small niggle, or a deal breaker), this is subject to local health economy approval.

It's an important step, but it might not be the end
I think I probably come down more on the side of 'wildly optimistic' about the announcement. But the 'local health economy' / local clinical commissioning group (CCG) approval thing is a bit of a worry. Even the JDRF announcement is rather cautious, stressing how important it is that the technology actually does end up reaching people. There may still be some work to do in your area to encourage the bean counters to play fair.

Balance of costs
The cost to the NHS of one Libre sensor is going to be £35. For people using intensive insulin therapy who might be using 8 or more finger stick test strips a day, the costs more or less balance out. Assuming an average-ish strip cost to the NHS of £14.50/pot it costs the NHS about £2.32 a day for 8 strips, versus £2.50/day for Libre sensors lasting 14 days where you can be checking 15, 20, 30 times a day or more. I am reminded of the real-world data that Abbott shared recently. In general, across all their users, the more people used Libre, the better their results. Fewer hypos, fewer highs, more time in range and a lower predicted HbA1c.

Even if you are not prepared to take on the heaving behemoth that is your local CCG and try to turn them around to the idea, I can certainly imagine myself having an interesting conversation with my GP (who, of course, runs their own business) about exchanging my strips for sensors for all the added benefits that gives me. It may be that as part of that negotiation I suggest paying for my own strips for DVLA and other occasional requirements. The cost analysis undertaken by NICE for T1 demonstrates that 8-10 strips a day can be cost effective (more BG information is associated with better BG outcomes and reduced complication risk). There may be niggling details and rules about 'local formulary', but it's certainly a conversation I'd be interested in having with my GP if the local CCG drag their heels (as they have been known to do in my area).

Getting your GP and/or hospital clinic on-side and banging the table for you is a good plan too. Speak to them and get them to apply pressure to the CCG to ensure readers and sensors are listed in the local formulary (which is located at Hogwarts just down the corridor from potions and defense against the dark arts).

But what about 'proper' CGM?
Some people have worried that all these funds getting diverted to Libre will spell the end of CGM funding. Personally I don't see that happening. CGM is currently only weakly recommended in national guidance for people who have significant problems with recurrent hypoglycaemia and have lost all or almost all of their hypo warning signs. The submissions to the NHS for approval were very clear that while Libre can really help some people reduce their exposure to hypoglycaemia with extra information, they are not a substitute for CGM alarms/sensor augmented pump for those with no awareness.

Diabetes UK have put together a position statement on Flash Glucose monitoring which I was pleased to be involved in, and which I think clarifies many of the issues about the Freestyle Libre. What it is good for and who can benefit from it. Thankfully it involves people with Type 1 and Type 2 diabetes - and actually I think should be applied to anyone with any of the many types of diabetes who are intensively using insulin. The recommendations on page 4 are very interesting.

Of course some people have been able to carefully negotiate the fiery hoops to secure full or partial NHS funding for CGM in their own particular case. I'm not sure I see the availability of Libre as affecting the clinical reasons which led to their funding being granted - unless they wanted to swap of course! Freestyle Libre is not a CGM, and does not issue alarms. If those alerts are important to you, then CGM is the better option. But for others the lack of 'alarm fatigue' is a positive benefit of Libre.

Onward and upward
I am really encouraged by this announcement. It's been a long time coming and a lot of work has been done behind the scenes to get to this point. Huge thanks to Lesley and Melissa at INPUT, the team at JDRF and Diabetes UK, and not forgetting Dr Partha Kar in getting us this far.

I am absolutely convinced that Freestyle Libre has a huge potential to help thousands of people who are quietly struggling with their diabetes management. Not in extreme enough need with frequent A&E visits to attract CGM funding, but just keeping going not knowing what they don't know about their BG fluctuations. I really hope the technology can be made available so that those quiet strugglers can go from doing OK to doing really well. Can reduce their long-term complication risk and improve their quality of life.

Posted by on Monday, 15 May 2017

Medtronic Guardian Connect Review - iPhone CGM in the cloud

Guardian Connect on iPhone, Guardian 2 on MM640G
and Contour Next Link 2.4
As some of you may know I've been lucky enough to be wearing Medtronic's new box of CGM tricks recently, and with nearly 4 weeks' wear under my belt and a few more days to go, it seems about time to post my thoughts about this new addition to the list of CGM options.

Ground rules
As I have been reflecting on my time using the Guardian Connect, a few things have stood out to me from the start. The first is that this is now the third continuous sensor system that I have tried. My first experience was Abbott's Libre flash glucose monitor (not strictly a CGM) and later, the MiniMed 640G sensor-augmented pump system which I trialled for 9 weeks in 2015. I mention this, because I think it has a significant effect on how I have responded to the Medtronic Guardian Connect. I am now no longer comparing 'no continuous data' to 'continuous data' which is, in itself, a huge change. Essentially you can take for granted that I am enjoying all the 'usual' benefits of access to continuous data - the ability to glance at your glucose level whenever you want to; overnight basal test type traces every morning, and trend and 'direction of travel' indicators. So what you get here is more me comparing the tiny details in user experience between the various systems, rather than being swept along by the benefits of CGM itself. I'm not sure if that makes this more or less helpful for anyone reading... but there it is.

Initial bewilderment
I don't know if you know anything about the Guardian Connect as you start reading this, or any other Medtronic diabetes technology for that matter - I mean why would you? But me... I'm on the inside, and that perhaps gave me certain expectations. I first chose a Medtronic Paradigm Veo which tantalisingly offered a 'low glucose suspend' if paired with the sensors that I never quite managed to afford. When I subsequently trialled the MM640G with it's souped-up 'predictive low glucose suspend' I think it's fair to say that for me, the results were extraordinary. Finally a piece of diabetes technology was actually proactively helping me out - dodging hypos automatically while I was blissfully unaware. So when I was first invited to trial the Guardian Connect I assumed that, of course, it would integrate with Medtronic pumps, SmartGuard and all the rest... Well... it doesn't.

So... CGM on iPhone... CGM in the cloud... sounds great! But what do you mean it doesn't link with SmartGuard? - I mean, wait... what?!
What I knew from the outset, was that the Medtronic Guardian Connect was a CGM that displayed sensor glucose readings on your iPhone, which sounds cool. And that it was Medtronic's 'CGM in the cloud' solution, which has very much been the buzzy new thing to have for a year or two. But I confess it completely threw me that this new CGM would not also communicate with my pump.

A new product line that explicitly doesn't offer the market-leading benefits of other devices in the same stable, while simultaneously offering all that trendy cloud-share-ness. Medtronic giveth, and they taketh away. Of course, Medtronic are keen to point out that the Guardian Connect was always designed as a standalone CGM (Medtronic have had a standalone Guardian CGM line for as long as I can remember). They say that this technology is intended for users of other pump brands, or people on multiple daily injections (MDI). Well... maybe. But I still find myself wondering whether a company would take this sort of decision if we were not living in a global marketplace with such complex approval mechanisms and timelines in different locations.

In a way I can sort of understand it from a technical perspective - my MM640G communicates on a completely different frequency to the bluetooth on my iPhone, so a transmitter would have to be able to send information to both devices. Would that increase transmitter size? I don't know - to be honest, I'm not really sure I care. All I know was that finding out that all the Guardian Connect iPhone-displaying-cloud-sharing juiciness came at the expense of SmartGuard was a real kicker.

The disappointment was particularly sharp when I discovered that people in the US have access to MiniMed Connect, which does link a MM530G, essentially a Veo with low glucose suspend, and transmits CGM to an app on iPhone or Android. Apparently MiniMed Connect is soon promised for the MM670G too - a newer pump than mine and not available in the UK. But all things? Approved in all markets? Available in all countries? Apparently not.

CGM displayed on your iPhone? Brilliant!
Having said all that, the idea of getting your sensor glucose sent to your iPhone is very appealing. I have very limited pocket space, and having to avoid scouring my phone screen to oblivion I need to keep keys and loose change in one pocket and my phone in another. So when using a Libre, with its separate reader, I have to squish reader and phone in the same pocket, and keep the reader in a little fluffy sock to keep them apart. Yes, you are right I am *such* a nerd. In short, having to carry a separate reader is a bit of a bind and the idea that I can use something I always carry with me anyway is hugely appealing.

Users of robot, rather than fruit-based smartphones may be wondering at this point whether Guardian Connect is available for Android? Well, at the time of writing, it isn't. And unfortunately I have no idea when, or if, an Android release might be available.

CGM in the cloud
The conspicuously 'on-trend' facility of the Guardian Connect is the way that it links to your Carelink account and can use a small slice of your phone's data connectivity to seamlessly upload your CGM data in the background. This gives you the opportunity of sharing your live CGM data with, for example, a partner, family member or housemate. This facility is particularly welcomed by parents of children with diabetes, who are able to keep an eye on things while their youngsters enjoy freedom to roam. Additionally Carelink allows you to set up text alerts, which will send an emergency message to a number or set of numbers if you do not respond to a low glucose alert. A potential lifesaver.

I think it is fair to say that personally I am not keen on Medtronic's Carelink platform. Particularly in its difficult current phase which is fraught with warnings of incompatibility if you dare to use current and up-to-date software. Medtronic promise that they are looking into upgrading their aging software, but evidence of progress or timeline remains frustratingly absent, aside from the recent release of Carelink Pro reports for everyone. The upshot of this lack of updatedness is that if you attempt to log-in to Carelink via iPhone you are greeted with a warning screen. However once you clear the warning, the live CGM data shows without problem. This easy access to sharing sensor glucose information has potentially powerful safety implications and would be a major encouragement, much as it is with Dexcom's Share, and the more homespun Nightscout options.

Getting set up
Before getting up close and personal with the new CGM technology, the first order of business was to download the Medtronic Guardian app from the App Store and hook it into my Medtronic Carelink account. For me, the next phase glamorously took place at the Diabeter clinic in Rotterdam, and involved pairing the Guardian Connect transmitter via Bluetooth to my iPhone. Screens in the Guardian app walked you through the pairing process, and an internet connection was required for the set-up. Once the ground work had been done it was simply a matter of inserting the Enlite sensor and waiting around 2 hours for the sensor to start-up. The Guardian Connect uses the same Enlite sensors as the MM640G system, but uses a completely different transmitter in order to communicate with your iPhone, iPad or iPod Touch.

Calibration 
Once the sensor has warmed-up you are prompted for a fingerstick calibration, which you enter into the app by pressing the blood-droplet 'calibration marker' top-right. This then shows a green circle around it which begins to count down, handily indicating the approximate amount of time before the next calibration is due. The precise timing being shown on the calibration entry screen itself. The calibration follows the familiar Enlite pattern of 2-6-12 hours after insertion and then approximately 12 hourly after that. The Guardian Connect also has the ability to request an additional calibration if it worries that things might be drifting slightly. My habit with Medtronic CGM has been to calibrate immediately before most meals (as long as they are not expected to be horrendously spiky ones). I find that 4 calibrations a day usually keeps an Enlite tracking very well for me. The usual guidance on calibration applies here - you should choose a time where, ideally, BG is within your target range, has been stable for 30 minutes or more and is expected to remain stable for the next 30 minutes. Avoiding calibrating when the Guardian app is showing up or down arrows really helps to keep the calibrations true. One nice thing about calibrations with Guardian Connect is that they are significantly faster than when I have used Enlite sensors with my pump. Connect calibrations are done and dusted within 5 minutes, while it can take 10-15 for my pump to finish calibrating.

Once or twice over my time with the Guardian Connect I have been prompted for an additional calibration overnight, which was initially confusing as I knew I had calibrated at around 11pm so should have been OK until morning. I suspect these were down to a less than ideal calibration earlier, eg one with BG moving or above target range.

A note for non-CGM users 
It is probably worth noting at this point for anyone reading who is considering using CGM for the first time the whole 'accuracy' question. People spend endless hours debating relative accuracies with CGM devices, and stressing or worrying if fingerstick and BG results are not identical all the time. In many ways, this is largely a waste of effort because a continuous sensor and plasma-calibrated blood glucose test strip are measuring completely different things - so they will never, can never show the same results all the time. It takes a while for glucose concentration in the fluid between tissue cells (that sensors measure) to come into line with capillary blood glucose. The differences are most noticeable when blood glucose is changing rapidly, and I particularly notice the lag when waiting for sensor glucose to show recovery after a dip into hypoglycaemia where the sensor may be 10 minutes or more behind 'now'. So you are well advised to decide to be fairly relaxed about any differences you see - providing, of course, that in general the information is within usable parameters.

For interest I am intending to give a suggestion of how I have found the tracking of Enlite sensors matches with fingerstick BG by taking a week of paired calibration readings. I've not got time to do that today, but I will add it here as soon as I can. My general feeling is that tracking between Enlites and fingersticks with the Guardian Connect is really very good indeed. And I trust it pretty much all the time. It's interesting to note how my frequency of fingerstick testing has fallen away while wearing sensors. Many days only checking fingersticks before meals, before bed, and before driving.

Update: Calibration and tracking vs Contour Next Link 2.4 
As promised I am editing this post to include some pairs of results between Enlite sensors on the Guardian Connect and my fingerstick BG meter (the Contour Next Link 2.4 USB that connects to my pump). Out of interest I have also done a comparison between the 'calibration' pairs for one of the sensors I have been using with my MM640G using the Guardian 2 transmitter - just because I was curious to see if there was any difference. Essentially I have looked at all the fingerstick BGs over the official 6 day life of the sensor that I used for calibration and compared them to the sensor glucose reading at the time. I should stress that this is not very scientific, and mostly for my own interest. The data set is pretty small (29 pairs for the Guardian Connect and 26 pairs for the MM640G). For what they are worth, here they are:

Medtronic Guardian Connect / Enlite results compared to Contour Next Link BG meter
BG meterSensorAvg +/- %
(against BG meter reading)
Avg +/- mmol/L
(against BG meter reading)
Average8.4mmol/L8.3mmol/L7.8%0.6
SD2.82.55.7%0.4
Distribution of readings
Number of readings where sensor higher1138%
Number of readings where sensor lower1655%
Number of readings equal310%
Number of readings within 0.5mmol/L1345%

Medtronic MM640G / Guardian 2 / Enlite results compared to Contour Next Link BG meter
BG meterSensorAvg +/- %
(against BG meter reading)
Avg +/- mmol/L
(against BG meter reading)
Average7.2mmol/L7.2mmol/L7.7%0.6
SD1.51.15.7%0.5
Distribution of readings
Number of readings where sensor higher1246%
Number of readings where sensor lower1142%
Number of readings equal415%
Number of readings within 0.5mmol/L1350%

My feeling is that these results are pretty much exactly the same between the two systems, which is reassuring, especially given the more varied results I was having on the days with the Guardian Connect with a higher average and wider SD (range of results). The MARD of less than 8% difference is above the expected performance of these sensors - I have always thought I must have lucky 'body chemistry' or whatever it is that means the sensors work better for some people than others. Effectively, it shows me that most of the time either of these systems will give me a result somewhere around 0.2-1.0mmol/L different from a fingerstick BG measurement (with potentially larger differences if my BG is moving rapidly, obviously). Around half the time, where my BG is just pottering along, sensor glucose and BG fingerstick are going to be less than 0.5mmol/L apart. And that is a level of accuracy I find easy to trust, and extremely useful in informing my diabetes management day to day.


Inside the app - traces, alerts and arrows
As a full CGM, the Guardian Connect offers both a rolling view of sensor glucose and audible/vibrate alerts if sensor glucose is, or is predicted to be, outside of a range you set. Today's sensor values are plotted as a graph and are viewable in 3hr, 6hr, 12hr and 24hr versions which each allow you to swipe back through previous time periods. Holding a finger over the graph reveals a scrolling pop-up of the value at that time. Additionally you can open the 'Now' menu to look back through previous day's sensor data.

Current sensor glucose is displayed above the graph, along with the menu and calibration icons. Where sensor glucose is changing more rapidly single, double or triple up or down arrows appear alongside the current sensor glucose reading.

Helpfully, when the sensor is coming close to expiry, or is running short of battery, you are alerted by icons on the main screen. Alternatively, you can always view the current details by looking in the menu screen.

The Guardian app also allows you to log insulin doses, carbs, blood glucose readings, activity or to make notes. The interface for adding and viewing each of these is pleasingly slick, but unfortunately you are required to log each value on a separate screen which would make regular use of them rather tiresome so I can't really see myself manually logging much additional detail using the app. The ability to add notes to provide context to what you are doing could be very handy though.

I was really pleased at the configurability of the alerts with the Connect. You can set both high and low alerts, along with additional alerts which are triggered anything from 10 minutes to 1 hour before your hard limit is expected to be reached if current sensor glucose trajectory continues. You can also set alerts where glucose is falling or rising particularly quickly. Snooze time allows you to customise how frequently you will be reminded of an alert condition - high and rise alert reminders can be set between 5 minutes and 3 hours while low and fall alerts can be set between 5 minutes and 1 hour. This probably all sounds needlessly confusing and granular in detail, but one of the challenges with CGM is to get good usable prompts without feeling nagged all the time, which makes the ability to precisely tailor both the mixture of alerts and their nag-ability really important.

You are also able to set an optional alert as a reminder that calibration is coming close to being due (rushing out of the house with no BG meter when a calibration comes due could make sensor glucose unavailable).

Not only that, but any and all of these alerts can be silenced at once with a single press on the iPhone's 'Control Centre' - more on that a little later.

Widget and app frustrations
Enabling Guardian Connect in the Notification centre can give you access to both alerts and a sensor glucose 'widget' on your phone's Lock Screen. Inexplicably though, the widget for a mmol/L Guardian Connect displays sensor glucose in mg/dl in the Lock Screen widget. Thankfully, as an app, this *should* be relatively easy for Medtronic to fix, but it still looks a little messy. Until the fix, users will just have to fall back on the, 'divide by 10, divide by 2, add 10%' mental acrobatics - unless their 18x table is reeeeeally good. As an example... 250 divide by 10 is 25. Half of 25 is 12.5 and then add 10% which makes 250mg/dl roughly 13.7mmol/L. Inside the app, alert states are shown by use of a coloured overlay panel.

Another frustration I had with the app, for all its smooth animation and solid build, was the total lack of any data analysis. I'm not sure whether this is something Medtronic have slated to add in future releases, but it seemed to me to be a significant missed opportunity not to have some sort of 7, 14, 30, 90 day sensor data overviews and number crunching. Or better still a pinch of Ambulatory Glucose Profiling to help make sense of that avalanche of data.

Enough with the interminable detail already - tell us what it was like to actually use!
Yes, sorry about that. Where were we...

Well... it's interesting. And actually I have been rather surprised by the experience. I think the only way to get my head around it is to list it as a series of pros and cons.

Pro - Less to carry, and very unobtrusive
Not having to carry an extra, separate reader has major benefits in terms of pocket space. We are used to carrying phones. We are used to glancing at them. No one would have any idea that you were interacting with your diabetes, even if you respond to or check an alert. Because that is what people do all the time in the modern world. There are a variety of tones used by the app, which indicate different things going on even before you get the phone out of your pocket. I kinda wish they had made the high and low alert tones slightly more varied. They do step up and down, but there is only around a semitone between the beginning and end and a quarter tone in between those, which all happens very rapidly. Occasionally I have heard the tone, but been unable to work out whether it was rising or falling. Of course it's not a real problem as it's only a glance at the screen to confirm - but I would have preferred that fraction of a second heads-up especially in circumstances where I might not be able to get my phone out for a minute or two.

Con - Now your phone is something else
Using the Guardian Connect has required me to make some adjustments in the way I use my phone - because now it is also my CGM receiver. I generally have my phone on silent, but I soon found that the single 'buzz' vibration alerts were too easy to miss, so I needed to put my phone's sounds on. Remember the single control centre command I mentioned to (helpfully) silence all CGM alerts if ever you needed to? It's the iPhone's 'Do not disturb' setting, which I have had running automatically overnight for several years. This prevented alerts sounding for ovenight hypoglycaemia, so I've had to de-activate its schedule and now activate it manually if I need to be notification-free for a time.


Pro - Phone battery life still reasonable
I am used to getting decent battery life out of my iPhones. Something like 3 days from a single charge - I suspect this makes me something of a rarity. I don't have a lot of push data notifications going on, and I deliberately restrict many of the usual battery hogs like background app refresh and screen brightness. I was a little concerned that the drip feed of continual data might suck all the life out of my battery, but while Guardian Connect has added a not insignificant demand on battery life I am still getting at least a full 2 days out of a single charge.

Con - battery charging
Of course, the flip side is that if you do run out of battery, it's no longer just your Twitter feed that you are missing - its your CGM and alerts too. And if your phone needs charging during the day, for all the time it's connected to the power socket you need to stay within about 9 feet of it to receive CGM alerts. This makes overnight phone charging a good basic approach.

Pro - gap filling
There have been times when my own peculiar charge cycle has got the better of me, and I've had to leave my phone charging on the side while I leave the room (or even the house) to do whatever. The neat trick of the Guardian Connect is that it stores several hours of data in the sensor, so that when you finally reconnect app and sensor the gaps are automatically filled in and your data remains intact. You don't get the missing alerts, of course. But at least you can look back over what has been going on while you've been away from your phone.

Con - Alert volume
Most of the time, when inside, the alerts are plenty loud enough. But the world is a busy, noisy place, and all too easily when walking outside I have missed both noise and vibrate alert. As a consequence I have tended to use the Guardian Connect a little like a Libre when out and about. Making sure I check it relatively frequently and not assuming the audible alerts would be able to cut through the hubbub. Sadly there's no way of making only the Connect alerts loud and leaving all your others at a quieter level, so it's a bit 'all or nothing'. I suppose as a fallback you could set a shorter alert snooze time so that you would get more repeated reminders of missed alerts.

Conclusions
I've not run any kind of analysis of BG numbers or hypoglycaemia frequency between Libre, MM640G/Smartguard and fingerstick-only as part of this review - quite frankly if you've made it this far I think you deserve a medal! I may try to find time to take a look at that in coming weeks with the data that are now safely stored in Carelink.

There is an awful lot to like about the Medtronic Guardian Connect. Despite my initial bewilderment, as a standalone product I think it sits very well among the current market and there is much to recommend it.

Medtronic get a bit twitchy at the idea of people who are trialling their kit restarting sensors, but having self-funded the same Enlites that this system uses since January I have found that I can get 12-14 days out of those with little if any apparent loss of performance. For anyone considering self-funding, the ability to restart to extend sensor life can be a make or break factor and I have no reason to believe that the Guardian Connect would behave differently to the Enlite's I've been using with my MM640G. Having said that I may just have lucky body-chemistry as I know from other user-groups that some people struggle to get more than 6 days out of an Enlite - so as ever YDMV.

My few weeks with the Medtronic Guardian Connect have given me very solid CGM performance, brilliantly flexible and tailorable alerts and while lacking the automation of Smartguard I get the feeling that the Guardian Connect has really helped me to keep my BGs in range, with very few hypos, and hardly any highs.

I've enjoyed using the system, though for a number of reasons I don't think it's one for me long-term.  I hope you've found this review interesting, please share your thoughts below.

Disclaimer: Medtronic offered me a trial of the Guardian Connect on loan with enough sensors to last 30 days. I have not been asked to write this or any other post about it, and have tried to accurately portray my likes and dislikes of the system. If I had thought it was utter rubbish I would have said so.

Posted by on Sunday, 7 May 2017

Running 10Km with Type 1 Diabetes


It's a few years since I did any running with much regularity, but inspired by raising money for a good cause, I found myself pulling on my trainers again in preparation for today's 10Km road race in Bristol.

If you are tempted to give running a go, there's a lot to be said for a 10K, it's long enough to provide a challenge, but short enough to remain fun, and the training runs themselves are relatively short and can fit in around a busy life. With great programmes like 'couch to 5k' you can gradually build up to running a reasonable distance from a completely blank sheet of paper - and once you are able to run 5Km repeatedly, you can leap to 10Km almost without really noticing - you just keep going at the same steady pace for a while longer.

Signing up to take part in an organised event gives your training some focus, and can help to motivate you as the time before the event reduces. There are also plenty of excellent training plans with runs and rest days that gradually build you up to 10Km and beyond. Despite my apparent grumpiness in the video I had a blast today. The field thinned out really quickly, and I was able to drop into a pace I was comfortable with very easily. There's always a brilliant atmosphere at these events and the route was lined with people cheering you on, samba drummers and live bands dotted around to lift the spirits. Even without that there is something special about running in a large group, and people often find they are swept along and encouraged into a slightly faster time than they might have achieved if plodding along on their own. Not that times are important, of course - it's more about just getting out there, having fun, and taking part.

Distance running with type 1 diabetes takes a little extra thought, but is relatively straightforward once you have worked out your system (which you can do during your training runs). For most people the main challenge is the possibility of hypoglycaemia caused by increased insulin sensitivity and glucose uptake of the muscles. I try to eat a reasonable amount of time before the run is due to start, and reduce my meal bolus a little - knocking off 10 or 20% usually helps. Eating a good while before starting running means that most of the bolus has finished working before the race starts. Being on an insulin pump, I am able to reduce my basal (background insulin) to only 20% of its normal level half an hour before the run starts and increase it to just under 'normal' perhaps an 80% TBR for a few hours afterwards. Some people find they need to take extra precautions for 24 hours or more as the exercise can make their normal doses overreach their needs a little. I was lucky enough to be able to wear a CGM during my run today, which was a great help in keeping an eye on things, but I have run longer distance races before with occasional fingersticks on the way around.

An extra motivation for people in taking on these challenges is often fund-raising, and I was really happy to be able to raise a little money to support 'Love Running' help both Syrian refugee children, and people in Bristol who are struggling with addiction, poverty, homelessness, and social exclusion. My fundraising page is still open for a week or two, and if you had a few quid to spare I'd really appreciate a donation, no matter how small. Make a donation.

Even more though, I hope you are encouraged to take the plunge and try adding a little activity into your life with T1. Whether through a big organised event like a 10k or half marathon, or something lower key like a 5k Park Run. Alternatively simply running, walking, swimming, hiking, dancing, climbing, a team sport, or whatever takes your fancy. With a little extra preparation there's no reason why type 1 diabetes should stop you.

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Posted by on Friday, 5 May 2017

Video: Inserting an Enlite sensor with One-press inserter for Medtronic Guardian Connect

I am a couple of weeks in to my trial of the new Medtronic Guardian Connect and I'm busily making notes to bore you all senseless with my thoughts about it at some point over the next couple of weeks, but thought I could grab the moment yesterday to shoot a short video showing sensor insertion for Enlites with the new 'One-press' serter.

Guardian Connect is a new 'standalone' CGM from Medtronic which is primarily intended for people on multiple daily injections, or who use other brands of insulin pump (as a standalone system it does not communicate with any of their insulin pumps or integrate with their 'low glucose suspend' Smartguard technology). I'll talk a bit more about this later when I post my review - there are other options available elsewhere in the world, but for us in Europe, the Connect system does not communicate with Medtronic insulin pumps, at least not yet.

Following in the footsteps of Dexcom's G5 and Dexcom Share, one cool feature of Medtronic's Guardian Connect is that rather than using a separate handset, the CGM information is displayed on your iPhone. Guardian Connect also uploads your data automatically to the Carelink cloud in real-time, which offers the ability to share your CGM data with a partner/spouse/parent/friend/random stranger. You can also set Carelink to issue SMS text alerts to particular people if the sensor detects low glucose levels and you do not respond to the alert within a given time. This sharing of CGM data can provide a valuable safety net for people who live alone, or for parents of a child with diabetes. At the time of writing I am not aware of an Android version, so Medtronic's Guardian Connect currently requires you to have an iOS device.

Just to warn you about the video - I wear the sensors in my abdomen, so you will have to prepare yourself for copious footage of my belly. Not so much NFSW as NSFA (not suitable for anywhere).

Don't say you haven't been warned.



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Disclaimer: Medtronic offered me a trial of the Guardian Connect on loan with enough sensors to last 30 days. I have not been asked to write this or any other post about it, and reserve the right to say that I like it if I do, and to gripe about anything that frustrates me. Tinkety tonk old fruit etc.

Posted by on Friday, 28 April 2017

Guardian Connect in Amsterdam and #TADtalk2017


Last weekend was a crazy whirlwind of diabetes-based shenanigans! I was already looking forward to #TADtalk2017, 'Talking about diabetes' having missed the first one last year I made sure I reserved my place as soon as I was able. It looked like a brilliant chance get inspired by some fantastic speakers and to meet in actual real-life with many people that I have 'known' for years, but only as 32px square avatars and 140 character encouragements. Plus a chance to catch up again with some of the others in the #doc that I've already had the good fortune to meet up with. Altogether, not one to be missed!

Then, out of the blue I received an invitation to attend Medtronic's second 'Diabetes Community Exchange', which was to be held in Amsterdam over the same weekend. Fortunately I was able to go to the main part of MDCE, on Friday and return early Saturday morning just in time for #TADtalk2017.

I am planning to post a more detailed account of my experiences with Guardian Connect, as I'm only a week in. But so far, so interesting. It's a standalone CGM, that does not link with any current UK Medtronic pump, but what it does offer is the display of your sensor glucose readings directly on your iPhone in the Guardian app, along with an automated upload to Carelink in the cloud, which means you can grant access to your BG data to partner/parent/friends/family, who can make sure you are safe.

For now though I just wanted to post a brief video montage of my weekend to give you a flavour of what went on, including a fascinating trip to the Diabeter Clinic in Rotterdam, where we went to get kitted up with our Guardian Exchange CGM.

Diabeter
Diabeter is a specialist independent diabetes clinic which has been running since the 1970s. Their headquarters is in Rotterdam, with 4 centres in total. Diabeter is recognised as a top centre for diabetes care and research. Medtronic acquired the clinic in 2015, but I'm not sure what if any influence they have over its running - Diabeter certainly retains its clinical, brand and therapy independence.

We were able to have a brief tour while we were there and the friendly and genial Dr Aanstoot talked us through some of the innovative approaches that define the Diabeter style.

I was really impressed by the patient focus in everything they do. And in their adoption of new technologies and ways of delivering care, including a weekly 'Facebook Live' question-and-answer broadcast which is being enthusiastically adopted. The look and feel of the place if very much 'non-medical' and could be a smart advertising agency office, or cool apartment depending on where you look. Light, airy and a great sense of space and calm.

Increasingly they find that people with diabetes increasingly value ad-hoc contact via video call or telephone in preference to regular calendared appointments, though you can also go in for a conventional face-to-face meetings if that is your thing. They have their own data management system which can accept information from any of the 'usual' upload systems (Diasend, Carelink etc) and which then crunches your data into something usable and understandable. And once you have got used to the reports, they always stay the same - even if you change your diabetes technology. The reporting system can analyse your data and alert you if it spots patterns that may need your attention, or flag things up so that the clinic can approach you with a, "How are things going?" conversation - again this is a preference you can agree with the clinic.

It was great to hear that they have an experienced diabetes-specialist psychologist on hand if you need that support too.

There were lots of small details which stood out, including this in one of the 'family rooms'. "We use round tables" said Dr Aanstoot gesturing in through the glass-partitioned doorway. "Much less confrontational. We don't want to be Dr on one side telling you what to do, with the family on the other. We want to be working together."

Catching up and first impressions
It was a great opportunity to be among a group of diabetes bloggers from all over Europe, and as far away as Dubai. Both people living with diabetes and a parent of a T1 child. Sara, from Sweden, who manades her diabetes with MDI had been wearing the Guardian Connect since February. A couple of others, myself included, were wearing MM640G with Enlite sensors and were watching to see how the traces compared. For others, this seemed to be their first experience of continuous glucose monitoring. We had dinner and chatted long into the night, as people with diabetes often do. It was perhaps a slight error of judgement to find myself drinking Talisker with Kevin from Belgium, along with Bastian and Richard of #DEdoc fame until passed midnight and with a 5.20am taxi ahead of me - but I was glad to be able to make the most of my short time in Amsterdam.
Pictured: Lovely Medtronic and Diabeter peeps, plus Kevin (Belgium), Sofiane (Switzerland), Sara (Sweden), Mel (UK), Lisanne (Netherlands), Christophe (France), Richard (Germany), Oscar (Spain), Abdullah (Dubai), Bastian (Germany), Dr Aanstoot (Diabeter) and Angel (Spain).

The Medtronic Diabetes Community Exchange event continued on Saturday, but Melanie Gray (Stephenson) and I had to bid a sad farewell as we hurried back for TADtalk in London. Though it has to be said that Mel made a considerably better choice for return flight time, and was able to stay for breakfast at the hotel.

Huge thanks to Mireille (sp??) and Aurelia (sp?!) and the others from Medtronic  and Diabeter whose names I cannot remember (sorry!) for making the event so enjoyable and informative. It was an honour and a pleasure to be there.


TADtalk2017
I was really looking forward to TADtalk, having seen such inspiring coverage on social media last year. Suffice to say it more than lived up to my expectations. Brainchild of Dr Partha Kar, Dr Catherine Peters and Prof Peter Hindmarsh that sprang out of a conversation in the back of a taxi, TADtalk (Talking About Diabetes) brings together inspirational speakers who share their experience and insight into meeting and overcoming the challenges that living with type 1 diabetes can bring. The talks themselves are videoed and distributed freely, as were last years, so do go and check them out.

This year's TAD Talk was smoothly hosted by safe pair of hands and everyone's second favourite T1 newsreader, Stephen Dixon, and the avalanche of tweets was storified by Diabetes UK. The glowing lineup of speakers included Sir Bruce Keogh, Miss Jen Greaves, Gavin 'Diathlete' Griffiths, #gbdoc's cat lover of choice Adrian Long, Roddy 'insane artic marathon challenge' Riddle, Mel 'international athlete' Grey, and not forgetting 'head of all the nurses and under-the-radar T1' Jane Cummings. There are some great blog posts that describe TADtalk2017 in more detail. See type1bri.com, type1adventures, Mel Stephenson, Adrian Long, and circles-of-blue for examples.
My overriding impression in the train on the way back was one of being uplifted, supported and encouraged. Having a whispered conversation with Mel Stephenson and top Jelly-Baby organiser @type1hurdles all the way back, having only met earlier that day.

Everyone involved should feel rightly proud. And if you get an opportunity to go to one, I would thoroughly recommend it.

Watch my weekend fly by


See more video noodlings on my Youtube thinghy.

Disclaimer: Medtronic paid my travel and accommodation to attend MDCE, and laid on a tasty dinner in the evening. I was also offered a free trial of the Guardian Connect for a month. I have not been paid to write this post or any post, and any opinions on what is good or bad about the technology are mine and mine alone.

Posted by on Sunday, 1 January 2017

Nothing like as '2016' as it seemed

Parliament (or possibly Hogwarts?) - one of a number
of inexplicable invitations in 2016
When I was imagining writing this post, the inevitable looking back over the last 12 months, I thought it would start 'last December' but as is the way of things these days, I have missed that particuar deadline and now I have to start with the significantly more cumbersome 'in December 2015', or possibly 'a little over 12 months ago'. It's a good job you are not here for the quality of the writing - or the frequency of postings for that matter. Whatever the reason for your stumbling across these witterings I'd like to say a massive THANK YOU for reading, commenting and all the encouragement you offer though FaceTwit and all those other new-fangled Social Medias. Genuinely, sincerely - thank you.

2016 was, by many people's reckoning, a bit of a git of a year. There were some things that happened that many people would have preferred had not, choices were made that left some people feeling distinctly 'Huh?!' or occasionally 'Oh NOOOOOOOOOO!!!!' and death seemed to be stalking around picking off an extraordinarily large number of beautiful, creative and talented people to such an extent that it is really hard to remember more than a few of them without feeling slightly overwhelmed. Humanity's ability to be generally awful to each other seemed to be conspicuously in evidence and even the weather and the stability of the earth's crust itself appeared to want to get in on the act.

And yet, when I look back over things closer to home, I realise that we as a family had a pretty great year while all of that was going on. Our eldest left to study away from home, found some great housemates and is having a wonderfully creative time. Our yougest embarked on a new adventure, effectively the next stage of their life, and is exhibiting extraordinary maturity and creativity. And we added a new hairy member to our househood who ensures, as has been remarked upon, that at least once every single day, each of us breaks into a massive grin and/or hysterical laughter.

Early last December (except-that-technically-it-wasn't-because-December-finished-yesterday-so-I-missed-it-by-one-day-but-anyway-you-know-what-I-mean-because-December-2015-sounds-too-long-ago) I took up an invitation to speak at the Royal College of Physicians in Edinburgh. This was the first time I had been asked to speak to healthcare professionals and share my 'grass roots' experience of living with type 1 diabetes, and it was as rewarding as it was utterly terrifying. In January I was invited to talk about what it had been like contributing as a lay member of the Guideline Development Group for the updated NICE guidelines for type 1 diabetes in adults at Partha Kar's #talkT1 event which later gave rise to t1resources.uk. In March I received sponsorship to attend the Diabetes UK Professional Conference where I spoke about my experiene of using the Freestyle Libre glucose monitoring system and a few days later was invited by the wonderful May Ng's to speak at the Children and Young People's North West Network Education Day in Leigh. June saw me invited by Abbott to join bloggers from across Europe at DxStockholm for a hugely inspiring weekend. More invitations followed to present to parents or children with diabetes at the CYP East Midlands Network Day and to healthcare professionals at the Yorkshire and Humber CYP Diabetes Network. In the meantime a funding application was granted for a clinical trial of a new intervention to tackle problematic hypoglycaemia for which I have been asked to assist with patient involvement (much more on that later). Along with some really interesting and useful meetings as part of the Medtronic 'Bloggers and Advocates' group I was also invited to share my experiences of hypoglycaemia as part of their excellent Hypo Heroes campaign for World Diabetes Day 2016. There was also an entirely unexpected invite to a meal at the Houses of Parliament, but to be honest I have a suspicion I may have dreamed that one. I mean... what would I be doing at the Houses of Pariament?!

The growth and launch of T1resources.uk from an embyronic 'wouldn't this be a good thing' idea to actually seeing the site filling out and gaining traffic has been a particular joy of 2016 - and seems to be one that will continue to grow in value and presence during the next 12 months.

Diabetes-wise 2016 has not been without its struggles for me. While all those 'peaks' and moments of excitement were going on, sometimes it felt like I was living in a very deep and shadowy chasm, perhaps largely of my own making. But more recently (and particularly following my most recent Pump Clinic appointment where some of you wisely advised me to opt for 'painful honesty' with my team) I have felt more myself about my T1. While it is still intensely irritating at times, I feel considerably more on top of things than I have for a good long while. And improvements in BG levels? Well those too may come in time.

Looking forward it is hard to know quite what to expect from 2017.

I have made one small, but potentially quite significant decision though. For the last two years I have occasionally used Abbott's Freestyle Libre to either see me through particularly chaotic periods of blood glucose (Christmas, birthday, summer holiday... that sort of thing), or to act as an opportunity for a reset when things have drifted somewhat. All of the extra data make it slightly easier for me to separate wood from trees and to tweak basal profiles and/or meal and correction ratios.

For 2017 however, while I may still occasionally use the Libre I have decided divert some family funds and to finally invest in the transmitter and charger to allow me to occasionally use CGM with my MM640G. If I can manage to stretch sensor-life to 10 or 12 days then the ongoing sensor costs are not dissimilar to Libre and, of course, come with the added benefit of SmartGuard, which worked so well for me before. I will only know whether this level of occasional use will be of any benefit to me if I try it (research data shows that better outcomes come for those who can use for 70% of the time - which is sadly significantly outside our funding ability). The cost of the transmitter is an eye-watering £500 and it is only warrantied for 12 months' use. Nevertheless the system was so effective for me when I used it before that I am keen to see if I can replicate some of the same effect with an odd sensor every so often. And, of course, whether the CGM data will allow the same 'reset' opportunity that I currently gain from a fortnight of Libre wear every month or two. My hope is that the transmitter will continue to function beyond the 12 month warranty if I treat it gently and talk to it soothingly every so often.

Time, and subsequent blog posts here, will tell.