The amazing amazing DOC

As 2010 draws to a close I find myself looking back over the last 12 months and in particular the changes to my experience of diabetes. Emotionally sensitive readers, or those who find gushing saccharine-sweet outpourings a little cloying may want to look away now.

As the year began I was just doing what I always did to keep my diabetes under control. It worked, more or less, most of the time. There were a few too many highs, a few too many lows, the constant contradictory feeling that things could be better and that things were as good as could be expected while retaining any semblance of a normal life. I think this feeling plagues many who live with diabetes. The suspicion that if you had more self control or were willing to give up treats/flexibility/various major food groups and could commit to live an identical gram-perfect life every day your control would finally be sorted. Except that you can't. And let's face it even if you did you'd be pretty miserable, or at the very least pretty difficult to be around.

So I pottered along happily enough, thinking that things were OK. In a way I suppose they were. Then in February I had my unfortunate event (apologies to Kermode and Mayo's Wittertaining podcast) which, without boring you with details involved at various points: a massive hypo, loss of speech function, a suspected stroke and a trip to A&E. Suddenly the goalposts shifted and control which was 'good enough' was no longer good enough.

At about that time we began looking around online for people writing about their life with diabetes. There were a few European blogs, seemed to be almost nothing in the UK and quite a large number in the US. So we decided to begin our own blog - somewhere to share our experiences, rant, weep and post questions. Mostly writing for ourselves, but with some small hope that our shared experiences might offer support to others living with or affected by diabetes.

Life, like drawing is often a case of 'the more you look, the more you see'. Almost as soon as we had started writing about our own experiences we began to get feedback, comments and contact from a huge network of online PWD (people with diabetes). We began to have contact with well-established blogs, busy forums and frantic tweeterers from all over the globe. Before long I came across the term DOC (the Diabetic Online Community), or to give it it's official US-style title the Awesome DOC.

Steady now. Here's where it's going to get mushy.

You guys are amazing. Absolutely, completely and staggeringly amazing. Helpful, supportive, full of empathy, encouragment and very, very funny. Wise without being pushy. Full of advice but empty of 'rules and regulations'. I learned more tips, tricks, approaches and strategies in 6 months' contact with this online community than I have in maybe 15 years of appointments with Consultants, Registrars, Diabetes Specialist Nurses and Dieticians. I have been supported by people living with all different types of diabetes and have finally began to understand a little about life with type 2. Crucially all information is always suggested from the basis that everyone is different, there is no one-size-fits-all approach which will work. No overtones of judgement. A recognition that everyone will manage in their own way, with their own targets. Their own truimphs, failures and weaknesses. That we are all struggling against this common enemy on our own unique body-shaped battleground.

It struck me earlier in the year when the kids were listening to the Glee soundtrack (don't ask me which one), that the DOC should have Bill Withers' 'Lean on Me' as its anthem (a power-chord laden reworking by Blunt Lancet, naturally)...

Sometimes in our lives we all have pain
We all have sorrow
But if we are wise
We know that there's always tomorrow

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on

If there is a load you have to bear
That you can't carry
I'm right up the road
I'll share your load
If you just call me

So just call on me brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you'd understand
We all need somebody to lean on

I still have ups and downs, hypos and hypers, but these seem fewer and further between. Thanks to the advice and support I have been given from people I have never met (nor in many cases am I ever likely to) I can honestly say that I have never felt so in control of my diabetes in all the years since diagnosis. I am not due to have an HbA1c until around April but my monthly averages for the last five months hover around 6.9mmol/l which, if the conversion formula is to be believed, equates to an HbA1c of around 5.9%. That's a full 1% drop since my last one.

So thank you all. Here's to a happy, healthy and spectacularly well controlled 2011 for everyone.

A rough start with the Accu-Chek Expert

When I look back in a few months time I suspect I will think to myself that this was just a bit of bad timing. That of course this was going to be a struggle at this time of year with the variety of 'unusual' seasonal meals adding a lot of confusion to the early days.

My first few days with the Accu-Chek Expert have not been easy. So much so that I was tempted to give the whole thing up on day 3. But the funny thing is I can feel myself wanting it to work so much. To be able to abdicate this responsibility of constantly holding all those threads in my mind. What has been injected, how long ago, what has been eaten, likely absorption curve. Level of activity, current BG level, factors which pull this way and that when trying to calculate the correct insulin dose for a meal. Wanting just enough insulin to pull sugars back from being a little high, without going too far and ending up dipping into a hypo. The relentless daily balancing act.

And this is just what the Expert promises to help with. But of course it's only as good as the information it has got to go on, and at the start, unsurprisingly, this has not been quite right. To begin with, perhaps to err on the side of caution, it was suggested by the DSN to try a ratio of 1u:15g (one unit of insulin to 15g of carbs). This was based on a quick '500 rule' calculation based on my total daily dose. I suppose I wasn't expecting it to work, having worked hard for a year to tighten things up if I'd been out by 50% I suppose I would have noticed. Nevertheless I gave it a go. The following day I dropped it back a little during most of the Expert's time blocks (you can set different ratios at different times of the day). But it was still disastrous, perhaps due in part to inaccuracies in some of the other settings (expected insulin duration, expected amount of BG change per unit etc).

One of the things which surprised me is how vulnerable I was to doubting my own experience. Seeing a bolus dose suggested and thinking, "That doesn't sound right...", but then worrying that the figure I had in mind might not have been right either. Kicking myself when I soared high or crashed low thinking, "Bah! I knew that was going to happen." when in fact I could have stuck to my guns and overridden the suggestion each time.

So from a daily BG average of 5.4 (97) and 5.9 (106) which are arguably slightly on the low side in the 2 days before the Expert, I had an average of 10 (180) ouch! Then 8.2 (148), 8.7 (156), 7.2 (130) and 7.1 (128). To make sense of those numbers... if I stayed completely in the recommended range and tested before and after each meal I would get an average of 6.5 (117).

Like many diabetes things, this will take care, attention and more than a little experimentation to get right. My hope though is that I might have Colin (E decided he needed a name) as a little digital assistant every time I eat, to offer a half-decent suggestion of a bolus for whatever carbs are on my plate.

Here's hoping anyway.

Merry Christmas everyone!

Update: Accu-Chek Expert Review - one month in

New gadget - the Accu-Chek Aviva Expert

I have a meeting with a DSN tomorrow (Diabetes Specialist Nurse). A few months back they offered me a trial of the Accu-Chek Expert handset, and while that didn't quite work out, they do now have a few from the manufacturer that they are able to let people have.

From what I've been told the Expert is essentially the same as the 'brain' of the Roche insulin pumps. More than just a BG meter it allows you to input your carbs, level of activity and insulin ratios and will offer a suggested insulin dose based on the information you provide, plus an allowance for level of activity, stress etc.

It all sounds very promising and I'll be interested to see how fiddly it is to use in practice.

For the last 5 months or so I've been logging all of this information in the excellent DiabetesDiary for iPod/iPhone. It has really helped me spot patterns and thanks to its incredibly easy data entry and some nifty data views (monthly and 7 day graphs, monthly average and 7 day average graphs, min max and mean for any time of day flag etc) the Expert handset now has quite a lot to live up to in terms of usabillity and ease of use.

I'll let you know how I'm getting on when I've had a few days to play with it.

Update: Accu-Chek Expert Review - one month in

Diabetes bashing on Channel 4 News

UK diabetes forums erupted in indignation yesterday following a report on Channel 4 news.

Channel 4 News - Diabetes: the insulin investigation
While on the subject of health, I should mention that later in the programme we have a completely sensational film about diabetes and the high cost of a new form of insulin.
Diabetes already costs the NHS £9bn a year - our investigation has discovered that these new insulins - now used by millions in the UK - only offer minor benefits compared to older versions. Meanwhile they are costing us tens of millions extra annually.

The film exposes what some see as an attempt by big pharmaceuticals to transfer the world's diabetes sufferers onto an insulin which has only modest advantages for most patients - but is very profitable for the companies who make it.

I didn't see the report when it aired but thanks to the wonder of the interweb I was able to watch it today. This put me in the strange position of beginning to work out what I felt about it before I'd seen it.

Initially I wasn't sure what everyone was so upset about. But then I watched it.

The real shame is that the actual story is quite interesting. I didn't realise, for example, that there were more type 2's using insulin than type 1's (at least this is what was inferred in the report). I suppose it is possible since the number of type 2's is so much higher that even the relatively small percentage of those who use insulin therapy do indeed outnumber the total number of type 1's (who all use insulin), but it was still a surprise.

For type 2's using insulin the report suggests that many (most?) patients would get very similar results using older human insulin formulations as they do with the newer (and significantly more expensive) analogues. It was not made clear how this had been researched. If you watched very carefully, and if you already know a great deal about the subject matter you might just about have been able to glean that none of this is the fault, or choice of the patients. That it is the Big Pharma reps who stroll around hopitals wooing DSNs and diabetes clinics so that analogues become the default choice. That those specialist nurses are often far less familiar with the older formulations and do not feel confident in putting patients on them. There's no point in keeping patients, particularly diabetics, on older ineffective therapies because the short-term savings will be far outweighed by the cost in treating the diabetic complications that will follow. Similarly there is no need to prescribe insulins which cost 2 or 3 times as much if a more cost effective medicine provides the same therapeutic benefit. Which variety of insulin a patient uses should be a decided by clinical need, not some lazy default choice and certainly not purely on the encouragement of a Big Pharma rep!

Sadly, I suspect almost no one understood this from the report. Especially if they have heard or read pretty much anything else about diabetes in the last few years in the media. Because there is a very real, very big problem with the way matters concerning diabetes is reported in this country. In my experience the thrust of pretty much every article is in one of two directions.

1. Diabetes is very, very expensive to treat and it is costing the NHS (and that means you dear reader) an absolute arm and a leg in taxes.
2. Diabetes is caused by eating too much sugar and/or fat. People who get it are fat, lazy and only have themselves to blame. Now see point 1.
   

Occasionally the journos might throw in some other snippet about it being 'cured' by eating your own earwax or something similarly ludicrous, but by and large it seems to be either 1 or 2 or a combination of the two. And the more exaggerated and terrible they can make the story the better.

So it is into this terribly mis-informed world that yesterday's news report lands. Did they take the opportunity to explain some of the complexities of the condition? No. Did they carefully explain which of the many types of diabetes were affected? Not really. The focus was unnecessary cost and unless you know different already you would assume that the problem lies with every diabetic. Indeed many outraged comments from diabetics suggest that even those 'in the know' were mightily confused.

It didn't help that they began with a headline figure of the £9 billion. That is a whole lot of NHS money, and it goes on treating diabetes in the UK. Having got the really juicy, scarily big number out there they then threw about lots of other costs and figures. £300 million a year on insulin, and later £250 million potential saving. What? You could save almost the entire cost? Ah no! Sorry, you weren't listening carefully... the £250 million was over 5 years. So that's £50 million a year. Still not to be sniffed at, but sensationalist journalism and quite misleading.

Part of the problem, of course is that nothing about diabetes is easy.

The media don't understand it. They don't feel the need to understand it. It's a Big Problem and rather than take the trouble to research it properly they can stick with what they know (see points 1 and 2 above).

It seems to me that diabetes is an umbrella term for perhaps dozens of different disorders - Type 1, LADA, MODY, Gestational, Double and of course Type 2 the media's favourite Big Target. Some types quite are closely related, others very, very different and I've read that Type 2 is really just another umbrella term for a very large number of sub-types. The reporting, though, only ever talks about 'diabetes' as if it were some sort of indivisible whole. There was a passing mention of type 2 last night (about halfway through) but no explanation as to what that meant, or how and when a person with type 2 might be put on insulin. There was no clear explanation given about when the more expensive insulins are particularly effective and well worth the extra cost. Again and again different talking heads just repeated that 'the old stuff is just as good, and it's so much cheaper!'. Particularly misleading was the repeated blurry white-room shot (sourced from an image library by the look of it) with several young twentysomethings injecting into their abdomens. A group of people who seemed pretty much your archetypal type 1's to me, illustrating a report about insulin therapy in type 2.

The tragedy is that, from my type 1 perspective there seems to be a significant problem with the way type 2 diabetes is treated in the UK. Many of the type 2's in question will now be using insulin because their diabetes has progressed through treatment by diet and exercise, then oral medications and finally to insulin. They will probably have been refused prescriptions for blood glucose strips by their GP (even though the NICE guidelines mentioned in the report support SMBG - Self Monitoring of Blood Glucose in motivated individuals). Many will have been told they don't need to test, an annual HbA1c is enough. Without the ability to monitor what happens to their blood glucose levels when they follow the dietary advice they are given they will not have known how catastrophic it can be. In it's most extreme form "eat lots of starchy carbs with every meal" I have heard accounts from type 2's who actually began to eat more carbohydrate after diagnosis believing it will keep them healthy. More carbohydrate = higher blood glucose = more damage and excess glucose stored as fat.

Now if the £50 million a year saving was reinvested in test strips for type 2's. And proper education was put in place to help individuals establish the level and types of carbohydrate that their bodies can tolerate (because every diabetic is different), perhaps the 'inevitable' progression towards insulin, for some at least would be slowed. Maybe for others it would be reversed. I have heard of many type 2 diabetics who have moderated their carbohydrate intake by self-funded SMBG and have been able to reduce and then stop oral meds altogether. And at least one who appears to have recovered normal pancreatic function almost entirely.

Now that really would save the NHS some cash.

Curious? You can watch the report here.