Posted by on Monday, 31 August 2015

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

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

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

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

Posted by on Wednesday, 26 August 2015

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

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

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

Hooray!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Posted by on Sunday, 23 August 2015

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

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

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

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

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

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



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

Posted by on Monday, 17 August 2015

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

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

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

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

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


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Posted by on Tuesday, 4 August 2015

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

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

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

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

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

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

Thanks for watching!


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