Aaand relax! Thoughts on the REPOSE trial

I've been watching Twitter with some interest today, following a conversation about a recent piece of research published by top-notch diabetes Doc, Sheffield's Dr Simon Heller.

I first heard of the REPOSE study (Relative Effectiveness of Pumps Over MDI and Structured Education) in 2016 when I was able to sneak into the Diabetes UK Professional Conference, where Dr Heller published some of the early findings. It has now been formally reviewed and published in full and, as much as I am able to understand it, I find it fascinating reading.

If you are interested, you can read the study here: http://www.bmj.com/content/356/bmj.j1285

The intention of the study was to evaluate whether insulin pumps or multiple daily injections (MDI) gave the better outcomes for people living with type 1 diabetes who have received comparable training and support. Essentially they took over 300 people, spread across multiple centres almost all of whom had HbA1c results over 7.5% and offered them structured education/training in intensive insulin therapy. Of those that undertook the training (267) the study then followed 260 people over 2 years to see what changed. Of the study group, the pump vs MDI split was approx 50:50.

What did it show?
Here are some of the results that caught my eye...

• Supporting people with effective, detailed structured-education/learning/training* in the complexities of managing type 1 diabetes improves outcomes whatever method people use to deliver their insulin (* delete the phrase/s which annoy you the most)
• On average people do a little better on insulin pumps (-0.85% with pump treatment and -0.42% for MDI)
• When results are adjusted for differences which could have skewed the data, the pump 'win' was pretty modest at around an extra -0.25% (-2.7 mmol/mol) reduction in A1c for pump users vs the MDI group - the averages may, of course, hide significant individual variation
• Pump users additionally scored better for 'quality of life' and 'treatment satisfaction'

What I find interesting, reading between the lines, is that this study almost exactly replicates my own meandering journey towards insulin pump therapy. This whole blogging endeavour sprang out of a non-Wittertainment related 'unfortunate event' which acted as a catalyst for me to re-assess my own relationship with type 1. Chiefly that reassessment was that I was nothing like as good at dealing with it as I was allowing myself to think. I then went through a period of significant re-education, not by attending a formal course, but by my own experiments and learning from others living with T1D, many of whom were using updated intensive-insulin-therapy-type approaches. After much work, and many successes (including a reduction in A1c and elimination of severe hypoglycaemia) I realised that I had reached the limit of my MDI skills, and if I wanted to improve further - which in my case meant more or less maintaining HbA1c, but further reducing mild hypoglycaemia and glucose variability, then the next step for me was an insulin pump.

The small irony is that I had been offered an insulin pump repeatedly for going on 5 years at that time, but had never liked the idea. In fact, looking back, I think if I'd accepted a pump in the years before we started writing this blog, and before I had discovered the #doc - I am really not sure whether it would have done anything much for me. Or whether I would have just have tried it for a bit and then stopped using it out of frustration.

No magic bullet
One of my take-aways from the REPOSE trial is that insulin pumps (or any other diabetes technology for that matter) are never going to entirely 'fix' things. This was certainly one of the things that put me off pump therapy for years. If many of my errant results were down to 'user-errors' of judgement, I reasoned, what difference could it make whether that 2u, 3u, 4u dose was delivered by syringe, insulin pen or pump/cannula. It's pretty obvious really - or at least it should be - but a lot of the potential power and effectiveness of insulin pump therapy comes down to the way an individual thinks about their diabetes management. The techniques they use, the strategies they have been given to review and adjust on an ongoing basis. I attended a pump users event when I had only been using Artoo for a few months and was slightly shocked to meet people who had been using insulin pumps for years but had never used (or wanted to use) the combo/dual/square/extended bolus options. It may be that they didn't need to, or that they had never been shown how to. But the lack of curiosity was a genuine surprise.

Not for everyone, and not second best
It is all too easy inside the hothouse of the 'Twitter bubble' to let yourself believe that absolutely everyone is using an insulin pump, full time CGM, Nightscout, and open-source cloud-based Artificial Pancreas algorithm. If you understand even half of that sentence, you will know exactly what I mean. But the simple truth of REPOSE is that insulin pumps are just one option, and they will suit a particular type of person, with a particular set of approaches at a particular time in their lives. That doesn't inherently make them better or worse, and it certainly doesn't make them right for everyone all the time. I loved this post by everyone's second favourite ex-teacher-Libre-wearing-cat-loving-warm-ball-of-GBDOC-loveliness Adrian Long about his continued love of multiple daily injections. People can do brilliantly on MDI, and people can do brilliantly on insulin pumps. What matters most is the support and information/training they have been given. Diabetes is going to be infuriating, uncooperative and apparently willfully disobedient whichever insulin delivery method people use. What I need, in order to face those daily frustrations is a comprehensive set of strategies, and individually tailored personalised goals to make small incremental improvements towards better outcomes. In addition a good deal of understanding and moral/psychological support goes a long way to help.

The shiny gadget effect, sticks and carrots
I do find myself wondering about the possible catalytical nature of a new piece of diabetes technology. For some people, and I think I might be one, having a shiny new diabetes toy (or the promise of one) can re-energise them into a new, more active relationship with their diabetes management. It may also be that people who have never really fancied attending Structured Education, for a whole host of reasons, may decide to take the plunge in order to get access to the technology they are hoping will help.

I'm not altogether sure how I feel about this if I am honest.

I would hope that REPOSE leads to more individualised, supportive care, rather than people being forced to unnecessarily attend officially endorsed education courses purely to box-tick the process (and add delay into the bargain). My own journey towards pump therapy was excellent in that regard. In the pre-pump assessment I was offered the education, but in conversation it was decided that I was already using exactly the techniques and strategies that the course advocated, so that it was entirely up to me whether I thought it would be beneficial or not. I would not want people who might excel at pump therapy to be put off by a hardline education requirement... but at the same time, my own experience tells me that often you don't know what you don't know. And that many people who attend diabetes education expecting very little from it actually leave the course with their relationship with their own diabetes utterly transformed.

Worries
My slight worry in all this, is not what this study actually shows, but more how it might potentially be interpreted and skim-read - short version: pumps expensive and not much better. The current guidance over the use of insulin pumps (and when people may additionally benefit from CGM) is pretty clear cut. And yet, some people in some places find themselves having to jump through interminable hoops, or simply get enquiries brushed off for having 'too good an HbA1c'.

Insulin pump therapy really does work well for some people, but it is expensive and the 'working well' does not come automatically. What I hope comes out of all this is a greater level of support and assistance both for pump users and MDI whizzes to aim for those elusive  and aspirational treatment targets alongside a decent quality of life and an avoidance of diabetes burnout. With finite NHS resources it is only right that these therapies are used effectively, and clearly a vital component of that is the support, education and encouragement that people receive, not just initially, but on an on-going basis.

Simply blindly chucking technology at T1 is never going to work.

I'd be interested in your thoughts on this trial, and how you think it might impact you in your journey with diabetes. Please do leave a comment below.

The "I can..." of insulin pumps - Diabetes Week 2014

The theme of this year's Diabetes Week is 'I can...'. Here's a guest post I was invited to write for the Diabetes UK blog.

When I was thinking about this year's theme of 'I can' I was reminded of a conversation I had with someone last week about insulin pumps. It was something that they were being encouraged to consider, but like pretty much everyone else (myself included) their initial reaction was uncertainty. Uncertainty over being connected to something 24 hours a day. Uncertainty about relying on a fragile piece of technology to keep them alive. Uncertainty about how it would make them feel and how others might view them. Uncertainty over whether it would actually improve anything at all. In short, they didn't really think it was for them.

I know those feelings well. I had them all, and many more besides. I was 'pump averse' for many years. My clinic suggested that it might help with my recurrent hypoglycaemia, but could never really articulate how that might happen. All I could see was a big bunch of (what I thought were) downsides.

In the end, for me, it was reading the experiences of pump users online that convinced me to give it a go. The day to day nitty gritty of how it helped them. Now I'm not saying that insulin pumps are for everyone. Some people wouldn't want to touch one with a barge pole, others do just fine on Multiple Daily Injections and are completely happy as they are. But if it is something you are considering, here are a few 'I can's that an insulin pump has given me to add to your thinking:

If I want to go to bed at 5.0mmol/L, I can.
Ahhhhh basal! I have been through quite a few basal insulins in my 25 years of pancreas-impersonation. In the old days we were always advised to have a snack before bed. Why? Well because in all likelihood your basal-du-jour was going to be a bit over-enthusiastic in the early hours and could well plunge you into an overnight hypo. It was many years before I discovered 'basal testing' (systematically adjusting your basal insulin by fasting tests so that it just holds you steady) but try as I might, even with fancy schmancy analogues I could only ever get my basal 'near enough' on MDI. A bit too much here, not quite enough there... make up the differences with meal doses and guesswork. With a pump, the flexibility of multiple basal patterns which can be tweaked and changed with almost infinite precision mean that I can adjust things so that I am actually starting from a level playing field. To my mind, basal is the bedrock of my BG levels. If my basal is out, even by just a little bit, my meal doses and corrections just do not play fair. So I no longer have to worry about stocking up on carbs before bed, because my basal insulin should hold me level and when I need less insulin overnight I get less. Where I need more just before breakfast, I get more.

If I want to give a really accurate dose, I can.
My doses on MDI were often a bit 'ballpark' to be honest. I have always counted carbs and altered my doses based on what I am eating, but I usually rounded up or rounded down to make things easy. Plus I would use insulin:carbohydrate ratios that meant I didn't have to get a calculator out all the time. The Accu-chek Expert was a great tool on MDI for tweaking doses, but I was still using a 'whole unit' pen so there was a degree of rounding even then. Now I can bolus in decimal places. And those tiny tweaks of insulin here or there do seem to make a difference. True enough my carb estimates are still often done by eye, but at least one part of the puzzle is now being calculated and delivered precisely.

If I want to stop here for lunch, I can.
This was the biggest surprise for me. Rediscovering spontaneity. I began pumping with an fairly entrenched anxiety about being hooked up to something 24/7. I know almost no one who has not had that when considering an insulin pump. Many people say that within a few weeks (days for some people) they become completely at one with their new robot pancreas and never give it a second thought. I can't say that it was quite so quick for me, but certainly in less than six months I had stopped noticing being attached at all and my emerging 'unthought' behaviours (like automatically hooking it to a t-shirt when getting changed) meant I never really gave Artoo another thought. If you are newly on an insulin pump and it still feels a bit of a nuisance or 'in the way' hang in there. Where was I? Oh yes... Spontaneity. So I was well prepared to dislike being attached, but I really hadn't expected that attachment would turn out to be such a bonus. Out on a wander on holiday... get a bit distracted and it takes rather longer than anticipated... Oh this pub looks nice, shall we stop for lunch? What would have always previously been "No we can't, I didn't bring my pens with me" has simply become "Yes!". Wherever we are now I always have my 'kit' with me, and while I used to like the idea of being able to leave all this stuff on a table and just walk around 'like a normal person', personally I have come to realise that I feel much more 'normal' if I can eat whatever I fancy whenever I want to, without having to remember to bring a case full of gubbins with me everywhere.

If I want to have 20 boluses/corrections/snacks in a day, I can.
Well strictly speaking I always could have, of course. But in reality I never did. There is something so easy and effortless about push-button dosing that I am far more likely to add in a fraction of a unit here or there during a day when I recognise that I probably wouldn't have bothered to get a pen out, airshot, dial up and inject. This has increased freedom around snacks too. Where I previously found them just to be too much of a hassle on MDI, almost always resulting is a BG wobble in one direction or other (depending on whether I had bothered to bolus or not) I've had much more success with the effortless mini-doses a pump offers. It's easier, so I bother to do it.

If I want to run a marathon (or just vacuum the stairs), I can.
Again, this was something I more or less tamed with MDI, but the additional options available on a pump, like the ability to set a 'temporary basal rate' for several hours, have added considerable 'polish' to many of those day-to-day conundrums of physical activity. I am far less likely to see my BG levels dip below my target range when exercising these days and I'm buying far less Lucozade!


Just a few things of the top of my head. I'm sure most people on pumps could write their own list. Of course diabetes is still annoying and frustrating quite a lot of the time. A pump is not a magic bullet and it still involves a fair bit of faffing about. But for me having a pump has made a tighter set of BG levels more possible, with less effort and far, far fewer nasty lows.

If you are struggling with wrestling your diabetes into some sort of submission and have been offered a pump as a possible way forward I'd suggest giving it a go.

If I can do it... You can.

Pumping for two months - A little bit of everything

Artoo and I have been pottering along for almost two months now, and what with the New Year and everything it feels like about time for a bit of a catch-up. 

Anyone reading who has watched my transition from pump-averse to pumper might be interested in how I have found it in practice. If you have wondered whether pumping might be right for you,  but don't really like the idea, I suspect this might be doubly so. 

Before Artoo and I hooked up I had read a lot of accounts of people who almost immediately felt 'at one' with their new robot pancreas. People who almost forgot it was there pretty much from day one and while most report that it takes a bit of work to get a pump set up and working well the physical 'attachedness' side of things seems to evaporate. I wish I could say that I felt just this way, but I don't. Not quite anyway. *Almost* all the time attachedness is of little or no importance. I've had nights of uninterrupted sleep. No-one around me has batted an eyelid whenever I've  disconnected or reconnected in public (at the gym for example). Now that I've worked a way of hanging Artoo horizontally on my belt I no longer get dug/pinched in the side every so often. But in spite of all that there are still a few times every day when being attached by a short string to a lump of plastic is a tiny bit annoying. Most regularly i feel this while getting changed, but also occasionally just getting tubing caught on things. I even managed to pull a set out while hoiking up my trousers one day. Almost nothing, but I certainly couldn't say that I 'completely forgot it was there after a week'. 

On the other hand, of course, I have already realised that the 24-hour attachment also offers distinct advantages. I arrived at a meeting not long after a meal only to find that some tasty nibbles had been provided. On MDI I would have had to politely decline, but because Artoo goes everywhere with me I was able to guess the carbs, bolus, and get stuck in! And lie-ins... Aaaaaah! Lie-ins. Since moving my basal injection to the mornings I had needed to keep regular morning hours whether work day or weekend, within an hour or so. But now that my basal is automatically following a predetermined pattern I can sleep in as long as I fancy. 

One thing I hadn't quite expected was how quickly the set-changes would come around. Every two to three days sounded like almost never compared to 4-5 times every single day. In reality though they are quite a bit more of a faff than a single pen-injection. The sets hurt a bit more going in. You have to be quite careful and methodical to make sure you avoid bubbles and so on when setting up the reservoir. Added to that every single set change carries with it a 2-hour period of uncertainty, anxiety almost. Has it worked OK? Is the insulin being delivered? As advised, I make the changes before meals to ensure a proper 'test' but this also means that any slight miscalculation in the meal bolus can look like a potential dodgy insertion. I'm getting better at sensing whether sets 'feel' right in the first few minutes and I've only had one or two that I've replaced within the first hour or two, but it's not something that applies on MDI. 

One peculiar observation from the first few weeks. I know two others who started pumping at almost exactly the same time as me and all of us had the same, rather odd phenomenon in the first few weeks. People often need quite a lot less insulin when pumping, so it's usual for your team to suggest a new total daily dose, basal and bolus ratios. In the first week these new levels behaved pretty well for each of us, but then, quite suddenly at around 7-10 days we found our BG results creeping upward and each of us had to significantly change what had worked fine the week before to establish a new 'normal'. Not sure of it's just coincidence, but if you are about to start pumping it might be one to watch out for. 

And what about levels? After all that's the whole point of the exercise... During these two months I've had a bit of everything. Normality, illness, gym, no gym and of course, every diabetic's favourite mental obstacle-course... Christmas. Even in these early weeks I can see improvements. Fewer hypos and fewer and lower highs. And I have to remind myself that I am comparing with MDI results gained while using the Accu-Chek  Expert, which (once I had it set up right) provided a general 'smoothing out' from the levels I achieved before that. 

I've had some spectacular successes, and a few (largely self-inflicted) disasters too. The subtlety of delivery options is a fantastic addition to the arsenal. I still need to do a little more experimentation, but already the potential is plain to see. Most obviously, almost none of the doses I give these days are in whole units. It's always a decimal point here or there, and while my carb guestimates may be no more accurate, at least the doses are more precise so it's one error rather than two. 

I had expected dual and square waves to be useful for 'tricky' meals, but I hadn't realised how handy they would be at other times. If I'm at the lower end of my range before eating I can just ease the dose in (or just a part of it) over 30 minutes to take the edge off. I'm getting better at remembering TBRs (temporary basal rates) too. I always knew these would be brilliant, but as my experience grows I've seen afternoons playing in the band (with a heady mix of physical effort followed a while later by bursts of stress and adrenaline) that I know from experience would have meant a hypo/high shuffle on MDI pass with bewilderingly serene BGs. Only a couple of days ago we ventured to Bristol's new 'all you can eat' world food market for a leisurely, and not insubstantial, slap-up food fest. Duals and squares (and a few good guesses) left me scratching my head when the awaited BG carnage failed to arrive. 

I've had disasters along the way. For every success there have been wrong guesses and hasty corrections needed. I think it's quite funny, given that it looks like Artoo may well give me my best year of control for a very long time in 2012 that my very first test of the year (at 0.58 this morning) was 17.8 (320). 

Ah well... What's life without a few ups and downs. 

Look sir, droids!

Not very long ago (yesterday in fact) in a clinic not very far away... the adventure began.

Perhaps it is because I was eight years old in 1977? Perhaps it's because Dave and I have both been wrestling with the idea of turning to the 'dark side' for quite a while now?

For twenty odd years I have been using daily injections as a replacement to my pancreas. As recently as a year ago I was absolutely certain that despite the hype, an insulin pump was not for me. Pumping had been first suggested to me in perhaps 2002 or 2003 and I really couldn't see the appeal. All the carb guesswork, differing levels of activity and million-other variables would still be there messing things up, after all. The consultant who suggested it could not explain to me why it seemed to work better, just that it did. Over the last two years I have worked, noted, tweaked, experimented and focussed on improving my control as never before. But as good as things ever got on MDI it was still not good enough. In the weeks running up to my Annual Review the choices seemed pretty clear. A small change (to a different background insulin) on MDI, or a big change to pump therapy to see if it would work as well for me as it seems to for everyone else. Whatever I did with MDI, the hypo-squashing, control-improving, BG stability promise of the pump would still be there. It was time to try Replacement To Pancreas #2 (r2-p2).

So I'm typing this with a little robot counterpart attached to me. 'Artoo' and I have a long way to go.

First impressions are pretty good. Though to be honest since I have nothing to compare it with, how can I know? The first cannula I inserted (with the help of the lovely LJ, the DSN in charge of pumps at the hospital I go to) went in fairly painlessly with Medtronics spring-loaded Quick-Set gizmo. I was told that they often itched a bit for the first hour, but that it should settle. Four hours later it was itching like crazy, especially when I fake-bolused some saline through it. I'm not sure I had expected to constantly feel the presence of a set. And of course it may just be that, given that these are the first few hours, I am just hyper-aware of everything and that it is just all in my mind. Nevertheless, having read the first chapters of John Walsh's brilliant Pumping Insulin, and given that my week on saline is in part about experimentation, I decided to replace it in case something had gone wrong with the initial insertion.

The second try went pretty much the same as the first. Stung a little to start with - like an MDI injection where you nick a capillary except that it goes on feeling like that rather than going away in ten minutes or so. I've stuck with this one to see how things progress. I know different sets suit different people, it may just be that 9mm Quick-Sets are too long and 6mm would be better - or that I don't get on with the adhesive... or something else entirely.

I think that's the thing that is striking me most. This is a Paradigm-shift (ho ho!). It's absolutely like being diagnosed again. I have no experience to tell me whether this or that 'feels' right or wrong. Whether this sensation is fine, or a signal that something needs to be looked at.

It makes me very glad I have a week on saline to just get my head around the mechanics of it.

I've at least two more set-changes to go before I go back to the hospital to get started on insulin. I'm going to experiment with a shorter Quick-Set and a Sihouette to see how I get on with those.

If you are a veteran pumper with pearls of wisdom, or a wrestling with your own decision about pumping it would be great to have your comments.

UPDATE: WDD 2011 and some pumping firsts

D Art Day 2011 : The path of least resistance

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September the 1st is Diabetes Art Day, the brainchild of blogger, art therapist and all round good egg Lee Ann Thill. It's an chance for the DOC to get creative and try to say something about living with diabetes in a slightly different way.

I really wasn't expecting to be able to take part, but while watching telly a couple of nights ago I began scribbling something that sort of represents how I've been feeling for a week or two, and so - here it is. As I said in my last post, my Annual Review is coming up, and I've finally decided (I think) that I'm going to ask about pump therapy.

You can probably sense my uncertainty about my decision in the drawing. Essentially I see two ways forward. One way ('Switch to Levemir') might offer a slight improvement to control with the inconvenience of an additional time-fixed basal dose every day. No problem most of the time, but on occasional nights out/parties/holiday travelling possibly slightly 'in the way'. I'd also have the hassle of sorting out my new basal pattern(s), of course. Lots of testing and tweaking for a good few months. So minor improvement, but still a bit of a faff.

The other way forward is to switch to pump therapy. A full explanation of what I'm feeling about this, or expecting from will have to wait until later, but in summary: potentially major benefits, but much more of a faff.

All you dear pumping friends who have been telling me for the past few years how great pumping is and how you'd never go back despite its shortcomings have got me to a point where I at least feel I need to ask the question. You never know they may just say I'm not eligible for funding (HbA1c too good, hypos not bad enough, wrong hat size, moon in jupiter...).

But at least I'm going to ask.

There is a bright light ahead, but I'm feeling a bit lost about it and I don't know (can't know at this point) which the 'best' way forward is. 'The path of least resistance' is to go back the way I came and choose nothing. But I'd rather walk towards the light.

Update: Reviewing my review

Changes, uncertainty and what to do next

I had my appointment through for my Annual Review a few days ago (due early April). A change of staff at the clinic has meant that they have got rather behind. A week or so ago I called to see how things were going and I was offered an appointment in a cancellation slot. As a result I guess I'm feeling that this appointment represents my 'chance' to make some changes that I've been mulling over and I want to make the best of it.

For many years I just attended my annual reviews in a smile and nod frame of mind. If I mentioned a problem, whatever response I got was either something I had tried myself and knew didn't work, or seemed to relate to an entirely different set of circumstances. These days I like to go armed with a few thoughts, questions and, sometimes, requests for new things. This is easy enough when you have heard of a thing that seems to solve, very neatly, a problem you are having. When I had a period of time struggling to remember whether I'd injected or not, a pen which recorded doses and timings automatically was an ideal solution.

So ever since my appointment came through I have been wondering what to do next. There have been whole weeks recently where I've been grin-inducingly happy about my levels. Weeks with no hypos at all. Weeks with very tight control and few if any results outside my target range. Periods where I have felt that I'm winning.

But the weeks when it is not like that suggest that it can be even better.

I've been wondering about my basal for almost all of the time we have been writing this blog. If you are a regular reader, you must be sick of it. The problem is that sometimes it works brilliantly. And sometimes it doesn't. There is an alternative analogue basal (Levemir) about which I have heard Very Good Things for a long time. One of the apparent benefits of Levemir is that it is more responsive to change than Lantus, which can take a day or two to settle into a dose change. Another factor is that it can work well split into two doses. I tried this with Lantus but it didn't work for me. A person's basal requirement is unlikely to be exactly uniform throughout the whole 24 hours. The opportunity to have 2 phases of basal insulin, perhaps one with a bit more, one with a bit less, combined with the rise-and-fall activity profile of the insulin itself gives you a few more options. The job of basal insulin is to hold you steady while your liver is deciding whether to trickle a bit more or a bit less glucose out at that time of day.

Of course the most flexible, tweakable and tailorable basal pattern would be achieved with a pump. To be honest the most flexible, tweakable and tailorable delivery of any insulin would be a pump. About a year ago I wrote a post about not wanting one. In the 12 months since, I've changed my mind perhaps 100 times about whether pumping is right for me. That's before we even get to the question of whether or not any funding-application I made would be supported.

In the last few weeks it's been going round and round in my head again. Benefit. Drawback. Benefit. Drawback. I think I'm now prepared to accept that the fear of 'attachedness' would come to nothing. Everyone seems to have it beforehand, and no one seems to care after about a week. At least not enough for it to detract from the positives they are experiencing. But I still do have genuine concerns over delivery failure and finding good spots for an infusion site (one side of my abdomen is a bit dodgy absorption-wise with some lipohypertrophy from years of lazy overuse).

At the end of the day it feels like any change in regimen has a benefit vs hassle balance that needs to be weighed. If I went Levemir I'd be adding an extra basal injection at some point in the evening. Mostly this would be fine, but some nights it could get right in the way. And any change of insulin would require a fair bit of faffing about getting the doses and timings right. I could, unlike Lantus, get access to a 0.5unit delivery device which recent experience suggests could be well worth having.

Switching to pumping, of course would involve faffing of a whole different order of magnitude. But the potential benefits that I've read about so often still shine out from behind the wall of uncertainty and concern in my head.

I just don't know.

Update: D-Art Day : The path of least resistance

My pump problem and CGMS envy

I've been considering writing a post about this for weeks, well months really if I'm honest. I've kept putting it off partly because I keep finding out new things which change how I feel; and partly because what I want to write doesn't feel very current, very 'now'. It's not a view I read other people expressing. But I can put it off no longer - I just have to put something down, and if I change my view tomorrow, well you can all have a good laugh.

I don't want an insulin pump. There. I said it.

Now don't get me wrong, I don't think MDI (multiple daily injections) is a perfect system, far from it - it's just that I don't think pumping is perfect either. Swapping a set of difficulties I have come to know and understand for a completely different set that I see pumpers experiencing (or not mentioning) doesn't entirely feel like the brave new world the pump-evangelists keep telling me it is.

I do know that pumping has demonstrable benefits for many people with diabetes. I do know that pumping is the current 'new and exciting' insulin therapy. Pumping is cool. But that's not enough for me. Not yet anyway.

For those who have no idea what I'm talking about, an insulin pump is a smallish electronic device, similar in size to a mobile phone but around twice as thick. Within it there is a reservoir of insulin attached to an 'infusion set' - a length of plastic tubing (cannula) connected to a longish needle (by MDI standards) surrounded by a big sticky pad. The pump itself often has some electronic wizardry built into it to help you work out how much insulin you might need for a meal. You fill the reservoir, prime the set, insert the needle and away you go. No more troublesome injections. Insulin at the push of a button. And no more need for different types of insulin either. The 'basal' delivery is taken care of by a programmable trickle of insulin. One type of insulin is all you need.

The ability to trickle is, I think, the pump's big win. In terms of insulin delivery they are incredibly subtle devices. Injection pens tend to come in 2 unit, 1 unit or half unit increments. With a pump you can specify increments of 1/40th of a unit, depending on the model. The onboard electronics also allow you to set up very finely-tuned basal (background) insulin delivery profiles. A little more here, a little less there. Carefully balanced to match what your body needs during a 24 hour period. By contrast one or two injections of long-acting insulin a day with an allegedly (though not genuinely) flat activity profile seems preposterously crude, even to me. Going to be a little more active tomorrow? Just reduce your pump's basal profile by 5-10%, or set up a temporary basal rate. Boluses for meals are similarly flexible. The onboard calculator will suggest a dose based on your estimate of carbs in the meal against whatever insulin ratio you have set for that time of day and however much 'active' insulin you have on board already. More in the mornings... less in the evenings... fractional adjustments 1.275u:10g rather than the generous rounding up and down that I go for to make the maths easy.

Alison from diabetes blog 'Shoot Up or Put Up' makes a very good case. Her HbA1c (a test to indicate overall control) has never looked better.

So, you say, this all sounds very marvellous. Why am I not banging the table demanding one? Why, when pumps were first suggested to me by a consultant something like 5 years ago did I start down my pump-averse road? Why am I being so bloomin stubborn?

Well I'm not sure I absolutely know myself to be honest. But,

I hear of pumpers who say they would never go back to MDI.
I hear of pumpers who go back to MDI.
I hear of pumpers whose HbA1c levels are utterly transformed
I hear of pumpers whose HbA1c's stay pretty much the same
I hear people on MDI who swing crazily from high to hypo being recommended pumps
I hear people on pumps who swing crazily from high to hypo

and
I hear of pumpers whose kinked infusion set sends their levels through the roof (one teenage boy hospitalised overnight with borderline DKA, many others seeing levels I have never reached on MDI)
I hear of pumpers complain of infected infusion sites seeping yellow pus (sorry about that)
I hear of pumpers dropping their pumps and/or snagging their cannulas on door handles (ouch)
I hear of pumpers who find the sticky pads intended to hold the infusion set in position keep falling off

and
As a pumper I'd still have to estimate the carbs in each meal (and I'd get it wrong just as often)
I'd still have to make a guess as to how much I'd been more (or less) active than usual in tweaking bolus doses
I'd still be affected (or not) by heat
I'd still have changes in my basal requirements that need to be evaluated and adjusted for
I'd still have to work out if my liver was up to any fun and games, dropping in a little surprise blood sugar to keep me on my toes

In addition to all this I'd have to be attached to it. All the time. 24 hours a day.

On MDI I can leave my diabetic gubbins on the table between doses. Walk around like a normal person, well almost. Not so on a pump. The trickle of insulin needs to keep coming. And if you temporarily take it off to nip into the shower, or whatever, then you need to put in an estimated correction dose when you reconnect. With a pump all your eggs are in one basket. And you need to keep that basket with you. Which brings me to...

You have to carry it somewhere. I only ever have things in the front pockets of jeans, can't abide sitting, or leaning on anything in a back pocket. Women pumpers clip to their bras (apparently), but for me I suppose it would have to be clipped to the waist band like an 80s style pager. I have visions of a pump yoyoing around my knees as I break into a run, late for another appointment.

Night time would be even worse I suspect. I'm what you might call an 'active' sleeper, in that I roll around quite a bit (steady on there). Ellen seems to have taken after me in this respect and has been known to tie a duvet in a knot inside the cover. Quite a skill I'm sure you'd agree, but all my rolling around is not really pump-friendly. I'm not sure what I'd do with a pump overnight... gaffer-tape it to my chest maybe?

Not dropping it when you are getting changed.... Trips to the gym and getting all hot and sweaty... Swimming... Attempting to squeeze into a wetsuit for some holiday surfing... Crawling about in awkward spaces for DIY purposes... Bedroom antics...

I am told that these things are not a problem. That after a week or so you don't even think about it, but they weigh surprisingly heavily on me whenever I consider the potentially life transforming benefits of a pump. They also seem to get mentioned when people explain their return to MDI.

And then there are CGMSs.

Many, but not all pumps come with an added box of tricks. A CGMS (Continuous Glucose Monitoring System). Without one I suspect my overall control might get a little better, but not much. But I am absolutely convinced that a CGMS would make an enormous difference to my control. The system involves placing a small sensor under the skin which communicates wirelessly with a monitor (sometimes integrated into the pump itself, sometimes a separate unit). The CGMS records glucose levels every 15 minutes or so. Rather than the blood plasma used in fingerstick tests, CGMS systems are measuring the glucose level in interstitial fluid, so the results lag 10 or 15 minutes behind 'actual' blood glucose levels. Users tend to continue to use traditional meters to calibrate the CGMS and check results a few times a day. Crucially though, because the monitoring is constant, you get not only an indicative one-off level, but almost as important, you get information about whether you are stable, or rising, or falling and at what rate. You can be alerted when you hit a predefined level and make a decision on what measures to take based on how quickly things are moving and in what direction.

No more correcting for hypos that never were. No more suddenly discovering you've massively spiked after a meal and have been in the teens for hours. Alarms that alert you if your levels drop at night. More information. All the time.

And because a CGMS is wireless, you can keep the device itself wherever is convenient. Bedside table, coat pocket. There's no piece of string joining you to it and getting tangled up on things.

Both pumps and CGMS are expensive therapies. The devices themselves and their durables (infusion sets, wireless sensors) are both costly. But so is any treatment for diabetic complications you could mention. I know of a number of pumpers in the UK who benefit from a CGMS as part of their pump but no one, NO ONE, who has a CGMS as part of MDI therapy. If you are lucky you might be able to borrow one for a few days. Probably one of the old skool ones which store the results and have to be 'downloaded' at the end of your allotted time for your Diabetic team to pore over. And this is despite the fact that 2003 research suggests that a CGMS is as effective in reducing HbA1c and numbers of hypos for MDI users as for pumpers:

We found no difference in low subcutaneous glucose frequency between the 2 treatment arms, nor between MDI and continuous subcutaneous insulin infusion users.

And more recently from a 2008 study:

People of all ages - adults, teenagers, and children - who use CGM devices regularly (at least 6 days per week) can see positive results in managing their diabetes... Even people who already have their diabetes in control - meeting the recommended standards for long-term blood sugar tests - see improvements by using CGM devices

I don't know why it is that you can have 2 expensive treatment options (pump and CGMS combo) on the NHS, or just a pump, but not a CGMS on its own.

But I'm going to ask.