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.

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)

Thanks a bunch - Spare a Rose 2018

I'm sorry to break it to you folks, but things don't look very good for 'us lot' in the event of a zombie apocalypse. But in the world as we know it, where a life-saving medication has existed for nearly a century, it is horrendous to think that people, particularly children, might die for lack of insulin. But they do. For all our 21st Century self-congratulation about the ever-shrinking world and our technological marvellousness, access to healthcare remains far from universal - even in the allegedly 'developed' world. In poorer countries insulin may be all but impossible to acquire, or afford. And without insulin, we die.

It has been great to see quite a bit more attention given to the annual 'Spare a Rose' campaign from folks in the UK this year.

There is something so elegantly simple and profound about the 'Spare a Rose' concept. It takes a gesture of affection, a token of love, a symbol of intent - one which is so inherently transient and passing - how long to those roses last? A few days perhaps? And turns it into something genuinely powerful. Something almost heroic - saving the life of a sick child. The cost of a single rose equating to a month's worth of insulin.

Spare a Rose addresses so significant a need for people living with type 1 in some of the world's poorer countries. I think it's something everyone living with type 1 diabetes in the UK has considered, even if only in passing, at least once since their fateful diagnosis day. What if I lived somewhere else? What if insulin was very hard to get hold of? Or impossible to afford? There but for the grace of God...

I first came across the idea of Spare a Rose a few years back, and the campaign itself dates from 2013. A few of the great and the good of the #doc have enthusiastically supported the idea, particularly in the US where the idea began. The surge of attention in the UK this year is largely down to everyone's second-favourite irregular-blog-posting chucklefest Chris 'Grumpy Pumper' Aldred. Historically the UK's contribution to this particular charity pot has been rather on the small side, but I suspect, with your help dear reader, that things could be rather different this year.

'Spare a Rose' resonates, I think, because it focuses on a celebration of love. It takes the familiar commercial overindulgence and perhaps asks us to think about what it really means to express love, or care, or affection for others. Both those close to us, and also those we have never met. The idea is that you give one fewer rose to the special someone in your life, and donate that small saving to provide insulin and education for a child with type 1, living in some of the world's less resourced countries. Spare a rose, save a life. And it says something wonderful about people with diabetes coming together and connecting for the common good. Lots of people, giving not very much, all around the world, adding up to literally thousands of saved lives.

Something significantly more than the sum of its parts.

If you would like to save a child's life today, visit lifeforachildusa.org/sparearose and do something amazing.

If this subject has caught your attention and you'd like to know more about projects seeking to ensure global access to essential treatment for people living with type 1 diabetes I'd also suggest you look into #insulin4all which is an initiative of T1international.

Fiasp review, fun with 50:50, and the mystery of the missing insulin

I have been using NovoRapid for many of my 'pretending to be my pancreas' years. I had a brief dalliance with Humalog not long after we started writing this blog, but switched back to NovoRapid when I started with Artoo as my DSN had worries about accounts of Humalog crystallising in pump tubing.

One of the challenges with NovoRapid, as many users are keenly aware is that it's not very... well... rapid. NovoSluggish perhaps? NovoOhForGoodnessSakeGetAMoveOn!

When your blood glucose is stubbornly high and you dose a correction only to find it even higher an hour later it is very tempting to rage bolus it into submission with multiple additional units, only to find that you crash into low blood glucose hours later once they have all started acting together. I once wrote a post about speedboats and oil tankers outlining my frustrations around slow insulin action where everything else seems to act very fast indeed.

For those that don't know Fiasp (Faster Insulin Aspart) is the latest insulin from NovoNordisk. It is similar to NovoRapid, but has some additional ingredients that have improved the speed of onset. Official trial data shows a relatively modest improvement, but there has been much excitement in the DOC, and the early experiences shared seemed to suggest some people saw significant differences with faster action and a shorter duration.

I was keen to try Fiasp to see if I could do away with my reasonably lengthy pre-bolus at breakfast and lunch (taking insulin at least 30 minutes before beginning eating) and also to see if I could see improved/faster action of correction doses. This blog is my n=1 trial of 3 vials, I cannot say how Fiasp would work for you or anyone else, but this was what happened when I tried it.

But before we get started...
(jump to the Fiasp bit here if you're in a hurry, but you'll be missing out on some *sparkling* blogrambling)

The mystery of the missing insulin #1
When I spoke to my pump clinic about getting Fiasp they could not prescribe it because it was not yet on the hospital formulary. I had to get it from my GP who could use the PIP code to prescribe it directly. I planned to try it for 3-6 months to give me long enough to experiment with it and give it a decent go. I generally get 3 vials at a time when I order insulin. each u100 10ml insulin vial contains 1,000 units, which at my general Total Daily Dose of 30-35u should last me around a month each, more or less.

Except that they haven't.

Looking back, my insulin use has been pretty much as expected, but I used up those vials in 57 days not 90. And I am always careful to draw out every drop out of each vial, conscious of the huge privilege it is to live in a country where insulin is provided free for me by the NHS.

I had never realised before how much insulin prescribed to me goes unused. If I lived in the US with their absolutely horrendous price issues it would make a huge difference. Every set change for my insulin pump requires the tubing to be filled, and at the end of the site's life, that full tubing is discarded. I'm careful to only fill reservoirs with just enough insulin for their 3-day life, and have run them to all but empty more than once, but even then, there is a substantial measure of insulin left at the neck which you can't get to.

What this has showed me though, is that if planning a lengthy trip away, I would need at least a third more insulin than I might have guessed.

Oh and one more thing before we get going...

The mythical 50:50 split and other 'rules'

Immediately before switching - NovoRapid doing very well

I knew that changing the insulin I was using would most likely involve resetting a lot of things - ratios, factors and so on. So I decided (looking back this was probably not one of my brightest moments) that it would provide me with a useful opportunity to finally experiment with that mythical 50:50 split that some Healthcare Professionals seem quite keen on where exactly half your insulin is used for basal and half for meals. Along with the 500/100 'rules' that often get mentioned to me in clinic. I have always thought these 'rules' to be useful starting points - academically interesting, but no real substitute for systematic (and repeated) self-testing of basal insulin with fasting basal tests for example. Here was a chance to see how it worked for me.

So when I switched to Fiasp, I took an average of my Total Daily Dose (TDD) over the previous 30 days and split it exactly 50:50, then set a flat basal profile to spread that much insulin over the 24 hours. Apparently in most people with a functioning pancreas, the body uses half the insulin for food and half for background. Quite how they have worked this out is beyond me. And I've always thought, "Well surely, doesn't that depend on what you are eating??". But nevertheless the 50:50 thing still floats around and some HCPs raise eyebrows when your split is more 40% basal to 60% bolus as mine is.

Part of the reason why I half-thought this might be a useful experiment (apart from my own curiosity and thinly veiled desire to prove that it was nonsense and wouldn't work for me), was that I had read accounts by a few people who had tried Fiasp already that found it had a shorter action. By boosting my basal split to half of my TDD, I reasoned I might soften that out a little. Take less insulin with each meal, but still have some being fed-in continually in the background that I could dial down with a Temporary Basal Rate during exercise/activity.

Additionally I was wearing a CGM sensor during this period, and could watch what was going on, plus I had Smartguard to catch me overnight, just in case.

The first morning of my changing-absolutely-everything Fiasp trial showed a dramatic drop overnight - caught by Smartguard and low prevented, but enough to confirm my suspicions that a significant hike in overnight basal insulin would cause me problems going forward. Undeterred, and wanting to give the experiment more of a go I adjusted the pattern to shift some of the basal insulin into the daytime and keep the pattern at 50% of my TDD.

500 and 100 rules
The other half of my Great Big Reset experiment was to use the 500 and 100 'rules'. These are a suggestion of calculating your insulin:carbohydrate and correction factors using your TDD as a starting point:

1u of insulin covers: (500 / TDD) grams of carbohydrate
1u of insulin lowers BG by: (100 / TDD) mmol/L

The correction factor always works out very similar to the one I generally find works OK for me, but the meal ratio is always a bit of a surprise. More than once in clinic when the subject of hypoglycaemia has come up a calculator has been tapped and mentions made of what my ratio 'should be' according to the 500 rule - I often use 1:10 and 1:11, the 500 rule suggests 1:15. I've always been of the opinion that if my meal ratio were 50% out, I might have noticed, but this Brave New World was an opportunity to have a go and see what happened.

'500 Rule' boluses really struggling

After a couple of days I took stock. I had been experiencing a lot of high glucose alarms and had needed to dose several extra corrections to bring my levels back into range. Hilariously when I looked at the splits between basal and bolus I noticed that the extra corrections I had needed pushed me back almost exactly to 40:60 rather than 50:50. My diabetes can be extremely stubborn sometimes.

Additionally, I soon realised that the 500 'rule' was massively messing with my attempt to aim for 50:50. Even though I was using my TDD as a starting point, I simply do not eat enough carbohydrate most days for the 500 rule to generate half my TDD. I usually eat around 130-150g of carbohydrate per day. Don't get me wrong... I'm no sandal-wearing low carb evangelist. Sometimes I can eat 120g of carbs in a single meal - but on the whole, I find around 150g is all I need, and helps keep my BG a little more stable. The 500 rule seemed to assume I would be eating 250g of carbs a day. Which I can do, but carbier days are often the less predictable ones in my experience.

So I gradually began to tweak my basal profile and opted for more of a mid-point for meal ratios, and the experiment continued. I lasted around a week before I threw the towel in. I only hit the mythic 50:50 split on one or two days (about as many as I do using my own system to be honest). Most of the days with the 500-rule-ratios involved significant corrections due to rising levels, however quickly Fiasp may have been working. And more often than not these pushed my basal:bolus split back to where it normally sits.

Finally! The Fiasp part of the Fiasp Post
If you've waded through these ramblings so far (congratulations, some sort of perseverance medal is clearly in order) you will understand why I am choosing to pretty much ignore my first week's experience with Fiasp.

Looking back at that first week though, I will just briefly mention in passing that we were away on holiday and so there were a good few treats to test Fiasp's rapid action. I was also experimenting with not pre-bolusing for breakfast or lunch. Early results were promising once I had tweaked my ratios a little. Doses for other things, like white bread, ice cream, cake, beer did seem to be starting to act more rapidly, and where I'd misjudged things and was dosing for corrections they seemed to be starting to act within 25-30 minutes rather than my expected 60 minute wait with NovoRapid before I see much BG reduction.

I think it's fair to say that Fiasp had its work cut out because in the months before trying it, partly powered by the occasional CGM sensors I've been running this year, NovoRapid had been unusually cooperative. Many weeks with more than 80% of sensor readings in range and with almost no minutes below 4.0mmol/L.

Faster acting
After my slight false-start and once I had my ratios and basal back to more like where I would expect them to be I began to find my feet with Fiasp. During this period, here's what I found:

• I did still need to pre-bolus, but only about half as much. Perhaps 15-20 minutes at breakfast and 10-15 minutes at lunch. Much more than that and I risked dipping low before the carbs kicked-in.
• Corrections were acting faster, just as I hoped they would. This meant that my errors were resolved more quickly
• Meals where I would not normally need to pre-bolus and where I'd expect reasonable results from an 'all up front' approach I actually needed to delay the meal insulin. Setting all or part of it as a square wave/dual wave/combo
• Smartguard occasionally mangled these square and dual waves, cutting basal insulin and stopping the remaining bolus following a small dip in BG and just as the carbs began to hit, resulting in the dose only being delivered later on when I noticed what was happening. This was intensely frustrating.
• The insulin action did seem to be shorter than NovoRapid for me, or at least the way that Fiasp makes more of the dose available sooner meant that the tail was less pronounced and I reduced my duration of insulin action to better reflect 'insulin on board'
• Breakfast was my biggest challenge. Lower carb weekday ones (15-20g carbs) were relatively OK, but bigger weekend ones (45-50g carbs) were a nightmare. At some points in the year I can find I have to add an extra mini-bolus to account for my liver dumping glucose when I crawl out from under the duvet (even though my basal pattern always kicks-up at this time), but even that tried and tested strategy didn't keep me out of the teens after breakfast at the weekends. In the end I used a surprisingly strong bolus ratio that scaled the doses upwards where I was eating more.

Fiasp performing pretty well at 3-4 weeks in.

Finding the Fiasp sweet spot
There was definitely a point, when I'd been using Fiasp for about 3-4 weeks where I began to see distinct potential. There were still some horrendous numbers to be found, but there were some great successes too. For example, a Tapas meal out one Sunday with delicious breads, patatas bravas, beers and all sorts of incalcucables that was bolused late, in a series of guesses and to correct my earlier underestimates of carbiness where I could actively see Fiasp's faster action helping me out.

It was also at this time that my results around breakfast greatly improved, which helped a lot in improving my time-in-range.

What it made me realise, I suppose, was that after something like 15 years of using NovoRapid I had memorised a lot of 'exceptions to the rules'. Little tricks and strategies that I use, almost without thinking, to work around NR's particular activity profile and my individual BG response to different foods. When switching to Fiasp, I was needing to re-invent a lot of these, and discover a whole lot of new ones. If the switch was to become permanent, it would take time to build up this knowledge.

Things improving around breakfast time with Fiasp

Increasing resistance and the mystery of the missing insulin #2
Unfortunately my successes were fairly short-lived. I can see the Standard Deviation (how spread apart my BG results were) taking a leap upwards after about 10 days of beginning to feel I was making progress. During this phase of my Fiasp experiment my basal and bolus requirements seemed to be heading inexorably upwards once again (they had kicked upward after a couple of weeks, but I'd seen that happening to others and didn't stress about it too much). At the same time I was finding my earlier shorter pre-boluses less and less effective, and had more or less reverted to exactly the timings I would use with NovoRapid. Additionally, I no longer needed to dual or square wave those well known 'all up front' meals as I had in the first few weeks.

Even more perplexingly, rather than acting more rapidly, sometimes my corrections of high BG values seemed to have no effect at all. I would be watching a sensor trace waiting for a high or rising BG to be corrected and nothing would happen. I began to throw in 2u and 3u speculative 'turnaround' corrections to try to halt a rising BG only to see it continue to rise, and where I was expecting to have to mop-up the excess insulin with carbs later, the dose seemed largely to disappear entirely.

As an example, in the image you can see my BG rising after an early evening meal. The blue dots along the bottom represent corrections. The first, before 7pm was in response to an 'alert before high' which indicated I would be rising to 11mmol/L within 30 minutes. I gave a small correction (0.7u) which aimed to take the edge off the rising BG. Over an hour later, not only had the remainder of the meal bolus not reduced my BG, but the additional correction was not doing much either. By 8.20pm or so I was getting a little frustrated and bolused 3u planning to watch and wait -  mopping up with some tasty carbs once my BG had begun to drop. In the early days of Fiasp I would have expected even a modest correction to begin to lower BG within 30-45 minutes (unless immediately after eating), but over the next hour my BG continued to rise. The two corrections already on board almost doubling my meal dose. A further small correction at around 9.20pm did finally provide some BG lowering effect and I went to bed mid-range after a small snack. For anyone wondering about the condition of the infusion set - it returned to much more expected behaviour overnight and the following morning. But it was odd events such as this that rather cast a shadow on my Fiasp experiments. I began to opt for 3u and 2u over-corrections fairly often.

I was also increasingly aware of a stinging sensation at the infusion site. Not always, and sometimes stronger than others. But many infusion sites were noticeably tender to the touch.

Losing faith with Fiasp. Averages and SD rising.

Calling it a day
It was about this point where I decided that Fiasp was not going to work for me. I was nearing the end of the third vial of Fiasp and needed to put my repeat prescripton request in to restock. I decided to return to NovoRapid.

I am sure I could have made it work given enough time, but I was losing trust with it and finding it not altogether reliable or predictable. This was relatively manageable when I was wearing a CGM sensor to keep track of where doses were not behaving as expected, but I generally only use sensors occasionally and I really need an insulin that I can trust while I'm not able to watch it like a hawk.

Ultimately, I had wanted to try Fiasp to reduce or remove the need for pre-boluses, and to improve the speed of action of corrections. I had seen some evidence of these early on, but not for several weeks. And those positive attributes had apparently been replaced by a less than reliable action.

I am quite disappointed if I am honest. I continue to see lots of accounts of people getting on really well with Fiasp, enjoying lightning speed and seeing significantly improved post-meal numbers. I have also seen other accounts very similar to my experience though. So it seems that Fiasp may be an insulin that just does not work well for some people.

But for me - despite all its faults, NovoRapid has brought an immediate relief and return to significantly better results. Well... for the time being at least!

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.

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.

T1 Resources - a long overdue blog post

As is almost inevitable at this time of year I've been finding myself reflecting over the last 12 months in recent days.

I'm hoping to post something as a bit of a 'look back - look forward' in the next day or two, but wanted to give this long-delayed post about T1 Resources some room of its own.

T1resources.uk is a website that acts as a gateway to rated, reviewed and reliable online resources and peer support that can help people self manage their type 1 diabetes.

Some of you may already have stumbled across what I had been describing earlier in the year as 'Project Enormous' but for those that haven't it was an idea that grew out of a conversation that a few people had at 'Talk T1' an event that Partha Kar put together in Southampton in January last year to explore new models of care for type 1 diabetes.

The idea particularly resonated with me and it was something that I wanted to be part of because it was something that Dave Sowerby and I had discussed many times before. We have both been living with type 1 diabetes for many years (he since childhood, me since my early 20s) and we found each other during the early rapid growth of what gradually became #GBdoc. Without wanting to speak for Dave, I think it's fair to say that we both had a very positive experience of meeting other people online after years of relative isolation. The sharing of experiences, insight, suggestions, the understanding of the common struggles and frustrations, along with pitch black humour had a profound affect on me. Time and time again I would say, or hear someone else say, that they learned more online in 6 months than they had in the previous 10 years at clinics. Or that they *finally* felt they had people around them who understood what they were going through, based on lived experience rather than textbook theory.

But the question always remained - how could those positive effects be spread to a wider group? As a proportion of the 400,000 or so people living with type 1 in the UK, those connecting with each other online was clearly a miniscule fraction. And part of the nature of these blossoming interactive communities is that they can at once look impenetrably complex and full of well established groups and relationships. Finding a way in can look a bit daunting - even if you know there is something there to be found.

Add to this the complexity that some stuff on the internet is really useful, helpful and good, while other stuff is, not to put too fine a point on it, utter nonsense, and the challenge becomes greater. Particularly when you hear people expressing the wish that this stuff should be available on prescription, or at the very least be suggested to those newly diagnosed by their clinic or doctor.

But how could a doctor recommend something so intangible? What if the stuff people first happened upon was hopelessly inaccurate, dangerous or just dreadfully waffly. Perish the thought - someone might stumble upon these ramblings - surely all hope would be lost!

Wouldn't it be good if there was a place where you could find the 'good stuff'. And know that it had been checked by both doctors and 'real' people with T1.

And so, some of us living with type 1 diabetes who were connected to the diabetes online community, and some visionary healthcare professionals who could see the positive impact that peer support and social media interaction might have as part of a person's diabetes toolkit got together and made it.

What is T1resources.uk?

Put simply it's a starting point. A way in. A collection of blog posts, YouTube videos, websites and all manner of other content that have been reviewed by both a person living with type 1 diabetes and a qualified HCP. These are categorised and classified to make them easy to find and should give you a decent starting point if you are looking for information about any aspect of living with type 1 diabetes. And because everyone is different and wants different things, you can filter to only see stuff in particular formats (eg blog posts or videos), or that comes from particular sources (NHS, JDRF, DUK etc). If you know of something really helpful that is not listed you can suggest it. If you think something on the site is particularly useful you can rate it (or leave a comment) so that others who visit can see what people are finding helpful. For those who are venturing into Social Media for the first time there are brief details of what each channel offers and what to expect, along with advice about staying safe when looking for healthcare information online.

The site soft-launched in September and continues to grow and develop. It is great to see more people creating accounts and expressing opinions by rating and recommending resources. I had always hoped that there would be some community involvement as part of it. Best of all the reception among healthcare professionals has been amazing. I have been fortunate enough to be invited to speak at a couple of events during the year (more on those later) and whenever I have mentioned T1resources.uk it has been warmly welcomed with people asking for cards and details to pass on to people in their clinics.

I am hoping that the site continues to help people over the coming years.

Huge thanks to Sophie Harris, Pratik Choudhary, Kev Winchcombe, Laura (Ninjabetic) Cleverly and of course Partha Kar for their help and support and without whom this project could absolutely not have happened. Would be great to hear what you all think of it.

Visit: www.t1resources.uk

Dinkleflakes, diabetes, discussions and #DXStockholm

DxStockholm doesn't make sense, I'm pretty sure it doesn't actually exist. And if it *did* exist, then I'm almost certain I wouldn't make the list. It must be a particularly vivid dream, probably someone else's. I suspect Philippa's Dinkleflake-(me neither)-bacon-pancake-apple-sauce-and-double-cream breakfast is causing some sort of hallucination and I'm in it. Grand, wide, impeccable streets strewn with petals. Impossibly blue Scandinavian skies. More than two dozen storytellers with barely a beta cell between them, weaving tales in half a dozen languages. And yet, this time last week I was there.

But what is it for?

It is very easy to get cynical about these things. As a middle-aged Brit it's virtually compulsory. Any company that puts an event like this together obviously wants something. For all the compliance form-filling about not expecting anyone to write anything, surely it's just bribery plain and simple. Chuck 'em a few treats, show them some shiny new toys and let them spread the word for you through the FaceTwit-o-sphere.

Except that didn't happen.

Stockholm's 20's themed Haymarket Hotel, once a swanky department store

DxStockholm was the second of Abbott's European Blogger weekends. Last year saw one held in Berlin. There was an event in Sydney a month or two ago. I can't speak for the other events, but in Stockholm there was only one short session, led by Abbott's Principal Research Scientist Chris Thomas, that came anywhere close to mentioning product, and that was the only session where all participants were explicitly forbidden from saying anything about what they heard.

The rest of the weekend was an amazing opportunity to meet, mingle and share experiences among a group of bloggers from the UK, Germany, France, Holland, Sweden and Italy. A diverse bunch of people all at different stages of life, and at different points along their own unique diabetes journey (sorry... let's just all agree to forget that I actually used the 'J' word, apparently without irony, and never speak of it again). There was a programme of talks and interactive workshops that covered everything from personal creativity to the potential timing of being subjugated by our newly created super-intelligent hyper-machine overlords. We ate, we chatted, we shared, we learned, we laughed, we moved robot cat ears with the power of our minds.

I am hugely grateful to have been invited. Honoured doesn't begin to cover it.

DxStockholm really did feel like a genuine attempt on the part of Abbott to engage with the patient community. To support it and recognise it as a 'good thing', to encourage it and feed it. Living with a long term condition like type 1 diabetes is easier when you are walking alongside others. Where people can stand by you when you wobble, or understand the tiny, joyful victories of inexplicably well behaved BG levels after some food extravagance. The cloud of voices sharing their stories across Europe as grown enormously since we started writing this blog and I am proud to be a tiny part of that. In the same way that a building feels very different when you know that there is someone else in it - even if they are several rooms or floors away - my life with diabetes is more settled, easier to face, when I know I am connected in some abstract way with many others facing the same daily irritations, triumphs and disasters.

Abbott's theme for the weekend was 'My future, my choices', which led to a very engaging and interesting programme of content. If you'd like a really good summary of the weekend, with some cracking pictures this post by Jen Grieves is a good one. See also this, this, this or this. Honestly! Invite a bunch of bloggers to an event and suddenly you are up to your eyeballs in posts, all better than this one.

A few things that stood out to me over the weekend:
Stockholm is a really cool place. And it's always sunny. Always.

People are inherently creative, even if they don't think they are. Even the simplest snippets of conversation have a unique rhythm to them. Unique insight. Unique voice. You don't have to try too hard, or try to be like anyone else, or do what they do. You just have to be you. No-one on earth can do that like you can.

People and things.

The future is a really exciting place. Things, people and information are getting more seamlessly connected and the Next Big Thing is just around the corner. What sounded like crazy science fiction 5 years ago is happening now and will be everywhere soon. But all of this wearable technology, interconnectedness, captured data, stored knowledge and artificial intelligence has no moral compass. We will have to provide the ethical framework for this exponential future. Above all we will have to remember not to lose sight of the value of people (Dalai Lama quote in that pic rather sums this up).

BioHacking is alive and well outside the diabetes world just as it is with the #wearenotwaiting brigade. Hannes Sjoblad introduced BioHacking as 'science where n=1'. Which sounds very much like what people living with type 1 diabetes face every day. Personal experimentation, data collection and the quantified self. Being aware of what data can be collected and how it can be used for and against you.

Snapchat is apparently a thing. And I still really don't get it.

Mindfulness is relaxing, but not ideal in a warm room at the end of the day with an impromptu scooter rally collecting in the street below.

Separated at birth?

One of the funniest things in the world is waiting while a very hungry Grumpy Pumper is about to be served a handful of toasted cauliflower croutons on an enormous, elegant white soup plate before the (delicious) soup starter is poured. If you've ever wondered if that frown can get any more frowny... I can confirm the answer is a big, solid YES.

Other Europeans are amazing with languages and our laziness and lack of ability as a country makes me cringe. 

Type 1 diabetes likes nothing more that to bring you down to earth with a bump. On Friday, as I landed in Stockholm and stood to move from my seat I happened to notice a young girl in the row behind with a familiar-shaped disc on the back of her arm. It turned out to be one of the German bloggers Lisa - the very first person I met at #DxStockholm. We got chatting and ended up sharing a taxi to the hotel with a few others on the same flight. My German stretches about as far as "Lumpi ist mein hund", "ich bin zwölf jahre alt" and "sprechen sie Englisch" but we all managed to chat away in the taxi thanks to their rather better command of English. Just before breakfast on Sunday morning as people were gathering and chatting away, Lisa suddenly collapsed. A rapid and unexpected crash into hypoglycaemia really knocked her for six and she slumped by the buffet table. Of course, there are few places you could be where you would get more immediate and knowledgeable help, and Lisa was on the way to recovery before the paramedics arrived. But it served as a bit of a reality check to all of us. These events lurk in the corners of each of our lives and while we sometimes splash our insulin around with casual abandon, there is a real and present danger quietly hovering in the background. But even these events are part of our stories. The highs and lows of a life with type 1 diabetes.

As a community we are better together. Different voices, different experiences, different perspectives, different needs and hopes and aims. But all fundamentally connected by our wonky pancreases and our dark sense of humour. Put two or three people with diabetes in a room and they can talk for hours - even if none of them speak the same language.

Huge thanks to Abbott for the opportunity of taking part in #DxStockholm. It was an honour to meet so many amazing bloggers from all over Europe and to feel connected to a wider world.

Obligatory #DxStockholm Group Shot

More about #DxStockholm
A Storify summary by Eglantine LeRoi
Our future, our choices… and our f**king disease by Antje

Googlytranslatable posts...
Abbott DxStockholm by Lisa (including an account of *that* hypo)
About dextrose lulls exit row and more by Sarah
DxStockholm by Sofia

Disclaimer. Abbott Diabetes sponsored my attendance at #DxStockholm and paid for travel, accommodation and organised the event itself. They also treated us to a smashing dinner at Kung Carls Bakficka restaurant on Saturday night and provided a beautiful cookbook on swedish cuisine. I have not been asked, or paid to attend, write about or publicise the event - frankly I think they have been more than generous!

Normal service will be resumed as soon as possible

Apologies for the interruption - the fluffy four-footed addition to our household has made finding time for blogging very difficult in recent months. Which is unfortunate really, because I have at least three or four posts waiting in the wings that I would really like to put together!

We picked up our young Clumberdoodle pup at the beginning of April and time has absolutely flown by since. For a couple of months before Marvin's arrival we were busily DIYing and generally attempting to puppy-proof (ha!) the house and garden a little. It's all been a bit of a blur to be honest and reminded Jane and I of a heady combination of those weeks with a newborn babe, mixed in with a good dollop of toddler mischief and a hint of teenage experimentation and boundary-pushing. Fortunately Marvin is a dog who likes a nap, and can be persuaded to do pretty much anything for the promise of a bit of chicken or nibble of Schmacko.

Around the middle of March I was chuffed to be invited by the wonderful Dr May Ng to speak at the North West Children and Young People's Network Education Day - if you'd like to get a glimpse of what went on I put together a Storify of the tweets. Alternatively, everyone's favourite Diabetes Dad, Kev Winchcombe wrote a great, but altogether far too modest blog post about the day. His talk was far more packed with laughs and interesting detail about diagnosis, transition, DIY APS and Nightscout than my blathering about spurious similarities between daily management of type 1 diabetes and Scalextric!

In the coming months I am really hoping to post a follow up to my reflections on DPC2016 detailing what I picked up from Iain Cranston's fantastic presentation on interpreting CGM data and Ambulatory Glucose Profile reports.

Additionally I have seen a number of conflicting reports/research about cholesterol and Statins in recent weeks and I'd really like to post something about that - if only to be able to process it a little myself.

Thirdly, I am honoured to have been invited by Abbott to attend an event in Stockholm in June called 'Dx' which looks to be really very interesting indeed.

Lastly I have been quietly working with a few other DOC legends (quite how I managed to scrape into their hallowed company is beyond me) on something I am only half-jokingly calling "Project Enormous". We hope that soon - perhaps in the next month or two - it will reach the point where we can release it into the wild and see if it has any 'legs', and lives up to the promise of the idea.

Exciting times.

Hope your BGs play fair in the meantime and thanks, as ever, for reading.

Disclaimer. For my attendance at the North West Diabetes Network Education Day my travel and accommodation expenses were generously paid, but no speaker's fees were offered or received.

Diabetes UK Professional Conference 2016 - Education, Individualisation and steps in the right direction

Between Wednesday and Friday last week I found myself in sunny Glasgow immersed in the insanely intense experience that is the annual Diabetes UK Professional Conference. I had been lucky enough to attend last year as one of Diabetes UK's bloggers and tweeters. This year Diabetes UK wisely ran a competition to throw the net a little wider for patients interested in attending the event and spreading the word. Thankfully they had the good sense to ignore my application and selected five people who did a significantly better job of sharing the content of the conference with the #doc (Diabetes Online Community) than I did last year. Hats off (alphabetically) to Andy, Bob, Charlotte, Ellie and Helen - you did an amazing job. In particular, Andy Broomhead has really put the work in covering many sessions of the conference in a series of excellent blog posts. Ignore this turgid waffle and go and read them instead - they are far better.

Undeterred by not making the cut with DUK, I contacted the lovely folks at Abbott Diabetes to ask whether they would be prepared to sponsor any patient attendance to the conference. I was delighted when they said that this was going to be a possibility, and was subsequently asked if I would be prepared to share some thoughts of my experience as a patient who has used Freestyle Libre off and on for a year or two.

And so it was that I hopped on a plane early Wednesday morning and was able to make the opening sessions of the conference in the architecturally-spectacular SECC in Glasgow. The Diabetes UK Professional Conference really is quite hard to describe. At least this year I was a bit more mentally prepare for its scale. There are upwards of 3,000 people from all over the world who specialise in diabetes, and everywhere you look people are making connections, comparing notes, absorbing new research and knowledge and generally seeking to see, or create, or develop better diabetes care. The programme is so packed full of sessions and opportunities that however much you try to cram in you are left with the feeling that you have missed out on really good stuff. Additionally, having been to a few events over the last year or two I am beginning to find the concourse a more hazardous environment - particularly if timings between sessions are tight. It's all too easy to bump into someone you've met before and grabbing a 'quick five minute' catch-up can leave you scurrying to your next session and having to creep in at the back with the apologetic shrug of a guilty latecomer.

I cannot possibly do justice to all the excellent sessions that I saw over the three days, so instead here are a few edited highlights.

Overall themes that struck me: Education; individualisation of care; leveraging (ugh! sorry) apps and technology; empowering and engaging young people; treating people, not numbers.

New outcome trials in type 1 diabetes
The opening plenary session on the first day included three talks, one of which was Simon Heller presenting results from the REPOSE trial (The Relative Effectiveness of Pumps over MDI and Structured Education for Type-1 diabetes) which is due for publication very soon. Essentially, REPOSE has shown that pumps, on their own, make less difference than might be supposed. Yes they *are* more flexible, yes they *are* more precise and offer additional techniques and possibilities such as extended boluses and temporary basal rates - but as Simon Heller said, "You can't take someone with a high HbA1c and say, 'You need a pump, that will fix it', because it simply isn't true." His argument was that as good as the technology is, people need a lot more help, support and training in managing their own diabetes in order for that technology to work well. People can do very well on pumps, people can do very well on MDI - but it is the help and support they have received in making better decisions that will make the biggest difference. It also makes me wonder whether, for some people, approval for pump therapy forms a sort of catalyst to re-examining their day-to-day management strategies. And what T1 care really needs in the UK is more engaged, better supported and individually encouraged patients who are equipped to wrestle their own particular diabetes monster as best they can.

Everyone's second-favourite rabble-rousing superstar endo Partha Kar summed this up quite nicely in his round-up blog post:.

It isn't about the latest super insulin, it isn't about the flashy technology, it isn't about the "cloud", it isn't about Apps or offering education programmes... it's only about one thing- YOUR ability as a professional to engage and communicate with the patient- move away from the "how's your blood sugars?" to "how are you"... till that day, we will not be able to improve outcomes - however much resource we magic up.

Colin Dayan then spoke about peptide immunotherapy (more on that later) followed by Rob Andrews and Parth Narendran presenting results from the EXTOD trial (exercise in type one diabetes). One result of the trial that really struck me was that when polled the majority of HCPs felt confident to advise around exercise and type 1. However when those same professionals were tested with a detailed questionnaire, they were often not able to give reliable information in response to the questions. EXTOD.org is a resource that aims to offer good information for heathcare professionals and to support patients with type 1 seeking to exercise.

Apps and web-based technology: fad or future for diabetes care?
A topic quite close to my heart this one. I was gutted to miss Nick Oliver sharing about automated dose adjustment (that bloomin' concourse again!) but hugely encouraged to hear from patients and HCPs at both Kings (Geraldine Gallen, Imogen Lee) and Newham (Mark Norman, Shanti Vijayaraghavan) about their experiences of 'virtual clinics' using Skype and other web-based technologies to support people with diabetes wherever and whenever they need it. A more flexible, less attendance-at-clinic-based-approach improved engagement, patient satisfaction and outcomes, particularly with young people. To be honest it sounded very like being connected to the #DOC, but with added 'doctoriness'.

Lastly Andy McQueen and Deborah Wake went on to describe the successful 'My Diabetes, My Way' project in Scotland.

Glucose Monitoring in Diabetes
Another selection of three talks. Andrew Farmer spoke about self-monitoring in type 2 diabetes. Unfortunately his studies always seem to come down on the side of 'no' for the general T2 population, and always talk about 'adherence to diet' rather than transforming your diet by 'eating to your meter'. Interestingly David Owens who chaired the session asked "is there a group of patients outside the guidelines who are willing to use SMBG to change their behaviour?" to which Prof Farmer did concede, "there is no evidence at a population level, but if someone says it really helps - then it is open to try it out". Sadly I was right at the very back of the auditorium, too far away from the microphone and wasn't able to ask about Dr Farmer's reaction to Jane Speight's interesting paper on the STEP study which concludes that structured testing for T2s not on meds can be very beneficial. This certainly seems to be borne out by experiences of people I see on diabetes forums who are able to reduce or eliminate medication using SMBG to define a diet that their body is able to metabolise properly by experimentation rather than guesswork or 'adherence' to what someone else says they should be eating.

The session on deciphering CGM data by Iain Cranston was probably my favourite of the whole conference. I'd like to go into that in rather more detail so I'll cover it in a separate post.

Finally for that session Lalantha Leelarathna spoke about emerging technologies, bolus calculators, Libre, CGM and encouraging results from sensor augmented pump and artificial pancreas trials.

In the exhibition hall
Later in the afternoon I gave the first of my 10 minute talks about the ups and downs of juggling type 1 and how I have been using the Freestyle Libre as an occasional part of my toolkit for the past few years. Slightly unnerving just having to start talking on the Abbott stand with people milling about, but just as they had for the brilliant Peter Hammond, people soon began to stop and listen to my rather less edifying wittering and a small crowd formed.

One other intriguing discovery on day one was a stand for a new blood glucose monitor (the Keya Smart), due to launch in the Summer (the UK being first in the world) which simultaneously measures blood glucose and ketones on the same strip from the same sample. Cynically I have to say I assumed that the strips would be priced perhaps halfway between 'normal' BG strips and the significantly more expensive blood ketone strips. However, the people on the stand suggested approximately £15 a pot - which is fairly average among BG strips. I'm not one who seems to struggle with ketones, and I am quite content with urine strips, but the possibility of ketone monitoring alongside each BG test could be hugely reassuring for anyone who has struggled with DKA. The meter offers a traffic-light style readout through green, amber and red to alert you if ketones are present and worsening - so you can instantly tell if you BG is simply annoyingly high or if you need to be taking more drastic action/considering A&E. It will be interesting to see if the product lives up to the hype when it launches.

Day two

Immune Pathways in Type 1 Diabetes: will they lead to a cure?

Mark Peakman's mind-bending Dorothy Hodgkin Lecture picked up where Colin Dayan had left off. All I can say is that it made a great deal of sense at the time, but really the science is way beyond me. It seems they can already identify people who will go on to develop Type 1 Diabetes at some point with some certainty, even in infancy. The tantalising possibility is to use peptide immunotherapy to alter the errant immune system action and prevent the onset of type 1. The signs are very encouraging, but (almost inevitably) still at a very early stage.

Hypoglycaemia

Chaired by Pratik Choudhary and Jackie Elliott, these 6 short talks covered many aspects of hypoglycaemia, brain function, risk, inpatient experience and models of care. One extraordinary and very unexpected statistic related to the average age of people admitted to hospital with Severe Hypoglycaemia. I would have assumed that the challenge lay primarily with children, or perhaps young people and teens. However the data presented clearly showed that the distribution is shifted towards elderly patients, often those living alone. I can't imagine how frightening this would be. However a new model of care developed in the East of England, including a 'single point of contact' had made significant progress in reducing repeat-caller rates and with increased referral to education has provide significant savings both in terms of money (more than enough to pay for itself), but more importantly the major cost in terms of quality of life.

Individualising targets in diabetes: NICE or not NICE?
Of course I was not able to resist this discussion about the role of NICE guidance in informing diabetes care. Chaired by Nicola Milne and Paul Newman, four speakers offered their opinion on the role of NICE guidance. Laura (ninjabetic1) gave a wonderful patient perspective covering structured education, test strip allowances, targets and inpatient care. Many good things in the guidance, but how many are being done? Whether the new tighter HbA1c guidance to avoid complications might induce feelings of judgement and failure.

Brian Frier from Edinburgh then gave some harrowing accounts of people being treated to inappropriate glycaemic targets. Chasing potential long-term benefits for the avoidance of complications in elderly patients gradually introducing treatment on top of treatment until they ran the risk of falls or injury related to hypoglycaemia. QoF came under a good deal of scrutiny, particularly in the way it discourages individualisation of care.

David Millar-Jones, a GP from south Wales dissected whether the type 2 guidance was fit for purpose. The published version had come a long way from the initial consultation draft he said, but there were still question marks over whether it could be easily used in real-world practice clinics.

Lastly Partha Kar offered his thoughts on whether the Type 1 guidance was realistic, or simply a utopian fantasy. He made it clear that he felt that the guidance itself was excellent, but asked the more difficult question of what the outcome of the publication was likely to be, particularly in the light of less-than-rosy National Diabetes Audit reports for Type 1. Whether the guideline production machine was actually able to achieve much in the cash-strapped reality of the 21st Century NHS.

This was probably one of the most lively sessions I attended with many questions and comments being made at the end of each of the talks. We were fortunate that Stephanie Amiel the hugely respected chair of the Type 1 guideline development group was there to clarify one or two points. And I may have accidentally stood up at the end to offer a few thoughts of my own, and to confess to the lower A1c target which was, after all, mostly my fault.

Summary
There was much to be encouraged about during the conference. A genuine desire to see diabetes outcomes improve, to share and promote better ways of doing things and to make tangible progress towards more people living better with diabetes.

Here are a few quotes that really resonated with me during the three days.

All in all a fantastic time and lovely to be able to meet up with so many faces old and new. Lis, Laura, Sandie, Charlotte, Ellie, Helen, Emma, Sophie, Dani, Hannah, Jackie, Becky, Stephanie, Andy, Bob, Peter H, Partha, Pratik, Pete D, Kris, Jonathan, Neil, Sacha, Sheldon and many more I know I have forgotten. Here are a few of us gathered in the bar of the Crowne Plaza on Thursday evening.

Disclaimer. Abbott Diabetes kindly paid for my travel, accommodation and entry to the conference. They also paid a modest honorarium to cover the time taken to prepare and deliver my short talks. I was not asked to say anything in particular and if I thought the Libre was terrible I would have said so. I have not been paid to write this post or any Tweets relating to the conference. The chance, as they say, would be a fine thing.