Posted by on Monday, 11 June 2018

No two days - Diabetes Week 2018

Ugh. Good morning to you too.
Apparently this week is Diabetes Week.

Me neither.

If I get the chance I will try to rattle in a post about the excellent #languagematters work that is being launched this week which hopefully will provide useful pointers to healthcare professionals and people living with diabetes who are trying to have more positive, more enabling, less stigmatising conversations.

In the meantime I have other things on my mind. Because as I posted recently on Twitter my diabetes has been behaving in a peculiarly cantaknerous way recently and I don't see why I should suffer that alone, so I'm inflicting it on you lot.

We've toyed with a few different straplines for our blog over the years, before we settled on the current one, "Because no two days with type 1 diabetes are the same. Except when they are." Which I liked because it was a) slightly annoying and b) didn't really make much sense. Both attributes shared by type 1 diabetes itself.

It is part of the unending joy of playing at being your own pancreas that you are perpetually caught in the tension between the illusion of 'diabetes maths' (deliver x units of insulin to process y grams of carbohydrate plus or minus z percent for activity/illness/alcohol/whatever) and the reality of living with a condition where the sheer bewildering number of variables that might combine, contradict, multiply or cancel each other out, when trying to calculate a precise (or sometimes wildly guessed) insulin dose, mean that it can be extremely difficult to work out why things have gone well, or not quite so well.

As a defence, some of us pancreas pretenders with a few years under our belts attempt to find some ways of reducing the number of variables without expiring from sheer boredom. It's a kind of coping strategy and it can work quite well up to a point. I have eaten pretty much the same breakfasts and lunches for more years than I care to remember. A regular rhythm with slight differences for weekdays and weekends (craziness!) but generally, more often than not, a known number of slices of a single brand of bread along with a medium-sized apple at lunchtime, and a not very adventurous range of fillings/toppings. It is functional eating. Designed to be predictable. Well tested. Evening meals I tend to eat a much wider variety.

And this regularity provides a useful touchpoint. Because as I said this strategy is only successful 'up to a point'. And that point is where something else changes. You have the normal food, you take the normal dose alongside the normal background insulin and the normal level of activity. But suddenly you see anything but normal blood glucose outcomes. If everything is changing all the time, with all sorts of different meal choices/fat contents/dose requirements, it is much harder for me to spot when my diabetes has joyfully shifted the goalposts (again!) and when I need to slightly adjust basal dose or meal/correction ratios.

I've been happily using this technique for years now. And my diabetes and I have got into a sort of gently seething stalemate. I fix the ratios/basal/correction factor. A week or two pass... a small basal tweak is required... then another... then another... And every month or three perhaps a larger overhaul might be required. The basal pattern might slightly change shape, or carb ratios and correction factors may need to be adjusted. Blood glucose normality (Ha! By which I mean the generally expected levels of BG chaos) resumes. Up a bit... Down a bit... Down a bit... Back up a bit. And so my diabetes world turns.

Something odd
More recently I have been seeing something much more unusual, unexpected and irritating going on. But such is the chaotic and fickle nature of living with type 1 diabetes, that it's taken me a while to even spot it was happening, and realise that over the past 2-3 months it has been developing into a bit of a pattern.

The perils of CGM
In a sense, I wonder if I might have spotted it sooner if I'd had less access to CGM. It sounds bizarre, but the difference for me between living with CGM and living without it is that CGM frees me from needing my diabetes to behave predictably. I am able to roll with it and adjust as I am going along much more freely. But that freedom, ironically, may come at a price. Without CGM, I need my diabetes to be much better behaved. I need to know that I can do x and (more or less) expect y to happen without watching it unfold, or being alerted if things are going off-track. I've only been wearing CGM occasionally this year, but it's probably been 50-60% of the time. And that's a lot of weeks of 'adjusting on the go'. Having run sensor-free for 2-3 weeks I realised how much I had lost my fingerstick BG mojo (especially after a full year with quite heavy CGM/Libre use in 2017).

When the weirdness started happening and I was wearing sensors I just worked around it. It has only been since running sensor-free for a few weeks that I've needed to look at the root cause to try to get things back onto an even keel when I'm not able to watch what's going on between the dots.

Pattern spotting
What seems to be happening for me recently, at lunchtime and even moreso for evening meals, is that the speed of absorption of previously predictable meals has substantially changed. While I used to be able to take doses all up front with 20-30 minute delay before eating at lunchtime, and immediately before eating evening meals, I am now needing to use dual waves to substantially delay insulin delivery so that the late arriving food still has insulin available.  What had been happening was a post-meal period where an initial sharp BG rise was followed by a prolonged dip (needing multiple carb top-ups to prevent hypos while the meal dose was working at full strength) followed by a later rise into double figures as the food absorbed when the insulin was on it's way out. Many T1s will be familiar with this 'pizza effect' where the fat delays carb absorption - but suddenly I was seeing it with previously very predictable and cooperative foods.

I can't explain why this has suddenly become necessary. I'm not sure I even care to be honest. Especially since breakfast seems to have been entirely unaffected and is proceeding as it always has. Typical type 1 diabetes. It can't actually make sense. It just has to set new 'rules' for that thing, but leave that other thing as it was. And in another month? It could all change again!

The good news is that I have made some decent progress in the past few days to find a set of splits and timings of dual wave doses that seem to be working better for lunches and evenings (and reduced dose ratios to boot). I will pop a sensor to see a bit more detail in the next few days.

Hope the BG gremlins are giving you all a bit of peace.

Posted by on Tuesday, 15 May 2018

Feeling lucky at the Houses of Parliament.

Abbott's Jared Watkin, Robert Courts MP for Witney,
Lord O'Shaughnessy and some scruffbag on the end.
A week ago today I had the unexpected honour of being invited to the Houses of Parliament to a Parliamentary Reception on 'Innovation in Diabetes Care' hosted by Robert Courts, MP for Witney. Not your usual Tuesday.

Not only that, I had been asked to give a brief chat about the impact of technology on diabetes self-management.

The event was put together by everyone's second favourite flash glucose device manufacturer Abbott Diabetes Care, and it was great to bump into some familiar faces, including Diabetes UK's Chris Askew, as well as lovely folks from the Health Innovation Network, and various other luminaries, civil and public servants interested in healthcare. It's a bit unnerving to asked to speak to a room where speeches and introductions have begun "my lords, ladies and gentlemen" without that just being a jokey thing to say.

There was a buzz at the reception about access to diabetes technology, its importance and how access can be improved and made more consistent across the UK. Naturally there was mention of the emerging Libre accessibility map, but this was about more than just that one device. It was about recognising how far diabetes care has come, and the potential improvements to outcomes that have become possible.

Robert Courts, who is the MP for the constituency which is home to Abbott's shiny manufacturing plant spoke first, before handing over to Jared Watkin, the (surprisingly Welsh) president of Abbott Diabetes Care. Lord O'Shaughnessy Parliamentary Under-Secretary of State for Health later spoke about the Government's Life Sciences Industrial Strategy and promoting swifter access to breakthrough technologies.

For my own small part I opted for three 'I feel lucky's.

I feel lucky I wasn't diagnosed 70 years earlier. I was diagnosed in 1991, and it was only 70 years earlier than that good old Banting and Best made their breakthrough discovery. Now we all know that living with type 1 diabetes is fraught with tales of lost feet, fried eyes and defunct kidneys, but it really wasn't all that long ago that us pancreatically challenged types really were not expected to last very long at all.

I feel lucky that it's 'only' diabetes. Now this, of course, is one of those phrases that you are only allowed to say if you have diabetes yourself (and even then only if you have the specific type to which you are referring). Having said that, and for all the looming spectres of physical and mental long-term complications, and the never-ending infuriating drudgery of the whole silly game I have often found myself musing that if I had been taken into a side room at the Drs on that fateful day 27 years ago and been presented with a table laid out with all manner of options, "We are sorry Mike, your number has come up and you have to have a long-term condition. Here they all are, with their pros and cons - you just have to pick one." I half wonder whether type 1 diabetes wouldn't have been a pretty good choice. You can eat pretty much what you like, within reason. You can do almost anything you want to. It doesn't stop you doing very many things that you might want to. You can actively work towards improving your situation and try to avoid the looming nasties. You can run a business. Run a marathon. Raise a family. And many people live long and healthy lives alongside it.

And I realise that much of my optimism stems from the advances in technology that I have seen over the years, and I'm thinking of technology in the broadest sense - gadgets yes like monitoring, insulins and insulin delivery, but also education and support networks.

I feel lucky that there has never been a better time to be diagnosed with type 1 diabetes. Which is probably a good thing because ever increasing numbers are joining our happy band. Even our own PM couldn't resist getting in on the fun. But the improvements in the technology and understanding we have available to us (at least available in theory) make the possibility of normal blood glucose outcomes tantalisingly close. And when you consider the emerging semi-automation of insulin delivery technologies alongside continuous glucose data, then the burden of self-management looks likely to reduce in the coming years.

I see access to technology (alongside education and support) as key in shifting the balance between the 80% of the diabetes budget currently spent on treating diabetes complications and the 20% spent on trying to keep people well. We may not be able to get those proportions to swap around, but I'd love to get things nearer 50:50 - hopefully by significantly reducing the financial and personal cost that comes when people with diabetes really struggle.

Oh and if all else fails, 'the cure' is only 10 years away too. Isn't that right Dave?

Disclaimer. Abbott Diabetes invited me to share my experiences of diabetes technology at the Parliamentary Reception, paid my travel expenses and offered a modest honorarium for my time at the event. They also laid on some tasty sandwiches and a very nice custard tart which I miraculously managed to carb-guess and SWAG bolus. I wasn't asked or paid to write this post or asked to mention any Abbott products in anything I said, which is lucky really because I pretty much didn't.

Posted by on Thursday, 22 March 2018

T1DCC at the Diabetes UK Professional Conference 2018

Last week I was able to sneak in to the halcyon halls of the Diabetes UK Professional Conference for the day.

I have been appointed as one of three PWD/people with diabetes/diabetic/lay/patient* representatives on the ABCD T1DCC. Oh yes. A PWD on the ABCD T1DCC - that's me! Diabetes is all about the abbreviations, and why bother with inclusive language when you can just spout forth with endless baffling acronyms and confuse people - that's what I say!

*whichever irritates you the least

The ABCD is the Association of British Clinical Diabetologists, and their T1DCC is the Type 1 Clinical Collaborative, which was being officially launched at a presentation on Wednesday afternoon. You can find out more about the collaborative here but essentially it is an initiative that seeks to support and improve care in type 1 diabetes, sharing best practice, guidance and support for healthcare professionals working in the UK. The T1DCC seeks to support improvement across 6 areas:
  • Pumps and technologies
  • Health care professional education, training and workforce issues
  • Patient education
  • Whole of life
  • Enabling success
  • Quality improvement
and along with two other pancreatically challenged types I am looking forward to chipping-in to the discussions and conversations as they arise.

The T1DCC presentation was divided into short sections. Chair Rob Gregory introduced the Collaborative itself. Emma Wilmot shared new downloadable Diabetes Technology Network 'best practice' guides for insulin pump therapy in adult clinics and also for inpatient settings. Anne Kilvert shared about quality improvement and the T1 Services Audit. Helen Hopkinson spoke about DAFNEplus which builds on the success of the UKs foremost educational programme for people with T1. Sophie Harris gave a presentation outlining the power of peer support networks for PWD, and how t1resources.uk can offer clinicians and PWD a set of searchable, trusted resources. Partha Kar spoke about the possibility of an emerging digital platform for T1D. The session ended with a panel discussion.

If your name's not on the list, you're not coming in
As is customary with the Diabetes UK Professional Conference there was a good deal of difficulty with being allowed in as a mere person with diabetes (which is always put down to some obscure rule about pharma being explicitly forbidden to advertise directly to members of the public, which tickled me as I saw this pharmaceutical advert on the way to the conference). However the PWD reps were allowed to attend as we were listed as 'speakers' at the presentation, so I was able to arrive a little early and managed to get to see some excellent sessions.

Widening access
To their credit, Diabetes UK did try something radically different this year in terms of widening access to some of the conference content to non-professionals. An extra 'Insider' day of the conference was added on the Saturday, which was only open to people affected by diabetes and condensed some of the main conference sessions from the previous 3 days. Everyone's second favourite Nightscout-Guru-Diabetes-Dad, Kev Winchcombe has written a rather good post about the Insider day. DUK also invited a couple of familiar PWD peeps to tweet from the main conference itself, so more of the content was shared, which I for one was very glad about. The lovely Ros from Type 1 Adventures writes about her take on the main conference and Insider event here.

Other stuff from the day
As with previous times when I have managed to attend the DUK Professional Conference, the day was an absolute whirlwind of fascinating sessions, with hastily grabbed coffees and chances to bump into familiar faces.

Psychological support
It was heartening to see the profile of psychological support being raised this year. The first session I caught was entitled 'Weaving psychological principles into routine care' with Debbie Cooke, Christel Hendrieckx, Jen Nash, Lisa Newson and Cathy Lloyd speaking about the pivotal importance of psychological support for people with long term conditions. There are downloadable resources from the Australian Centre for Behavioural Research in Diabetes (both for HCPs and people with diabetes) which are well worth checking out.

The discussion also extended to the language used in clinical interactions and looked to the #languagematters work underway nationally in the UK. 


Beyond A1c
A fascinating session about HbA1c, glucose variability, continuous data and 'time in range' which matched much of my lived experience. The suggestion from US clinician Ann Peters was that while HbA1c is still a useful research measure, it is increasingly being eclipsed by the usefulness and richness of continuous data. The same HbA1c can hide a multitude of different experiences of diabetes, and even significant challenges such as Severe Hypoglycaemia cannot effectively be predicted by A1c alone -  severe hypos can happen across a range of A1c's and have more to do with glucose variability than whether your HbA1c is above or below 7%.

Emma Wilmot's part of this session focussed on improving access to technology. She began with a slightly shocking statistic that the average UK HbA1c for someone with T1D is as high as the 'control' arm of the celebrated DCCT trial (1983-1993), which is still relied upon to show the benefits of intensive glucose therapy. For all the years that have past, fancy insulins that have been released, and technology that has begun to be adopted, on average people with type 1 diabetes in the UK are still only achieving those 'non-intensive' outcomes, with all the increased likelihood of diabetes complications as a result.

It was also heartening to hear in this session that our concept of what is meant by 'normal' blood glucose may be changing. When you are pretending to be your own pancreas it is easy to assume that 'nonnys' always exclusively live between 4.0 and 7.0mmol/L no matter what they do and what they eat. But as more people without diabetes are wearing continuous glucose monitors for a variety of different reasons it is becoming clear that even when you have a fully functioning pancreas there can still be quite significant glucose variation.

Inspired
Once again I left the Diabetes Professional Conference exhausted and genuinely inspired by the passion of healthcare professionals, researchers and academics.

It was wonderful to see an emphasis on person-first care, tailored to each individual. A desire to see the right technology used in the right way for the right people. To treat the whole person, body and mind to support them towards better self-care and better outcomes. It is clear that there is much left to be done, but the desire to make better progress is tangible.

Managing diabetes is a tricky old business, but these people really do care and really are seeking to improve outcomes for all of us pancreatically challenged types.

Disclaimer. Diabetes UK supplied me with a free one-day pass to the conference as a speaker. The T1DCC kindly paid for my train ticket which was very nice of them. I was not asked to, or paid to write this post. Your diabetes may vary. Blood sugar can go down as well as up.

Posted by on Saturday, 10 February 2018

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.