Not counting - the cost. An open letter to Diabetes UK.

Dear Diabetes UK

I was diagnosed with type 1 Diabetes in 1991 and joined the then British Diabetic Association almost immediately. Over the years I have come to value the support, research-funding, campaigning and much of the information that the organisation provides. However I am writing this letter because I feel there is a significant and quite dangerous problem with the advice being given to newly diagnosed type 1 and newly insulin-using type 2 diabetics in the UK. I am appealing to Diabetes UK to work with the NHS and healthcare professionals to implement new guidelines which provide essential information to new insulin users.

The problem is this: People are being prescribed basal-bolus insulin regimes without sufficient information about carbohydrate counting.

The problem does not appear to be universal. Some HCPs still do things the 'old way' and provide information about measuring the quantity of carbohydrate to match insulin doses but in a few weeks' research I have come across dozens of people, diagnosed over the last 10 or 15 years who were told little or nothing about the relationship between carbohydrate and insulin when they started a basal-bolus regime.

Some patients have muddled through, working things out for themselves, others have sought help and advice from peers or online forums. Even more worryingly, some patients report that they have asked their clinic or surgery for more detailed information only to be told that, "We don't offer carb counting here...".

This is insane. This is quite frankly, not good enough.

People are being instructed on what doses of insulin to take, and only being told to eat a diet which is low in fat, high in fibre and contains 'some' starchy carbohydrate at every meal.

When you inject a bolus dose of rapid-acting insulin the clock begins to tick. If you have not eaten enough carbohydrate within something like 30-60 minutes then your blood glucose level will begin to fall. If your level was within guidelines before the meal then the risk of hypoglycaemia becomes almost a certainty. On the other hand, of course, if your meal contains too much carbohydrate then your blood glucose level will rise steeply above and beyond the recommended limits putting you at greater risk of developing diabetic complications.

However, and this is the nub of the problem, 'not enough' and 'too much' become meaningless if the diabetic has never been instructed to measure the amount of carbohydrate they are eating. The problems are all too real, and the solution all too simple.

Every diabetic put on basal-bolus MDI (multiple daily injections) therapy must be given instruction on estimating, measuring and monitoring the amount of carbohydrate in their diet.

When I was diagnosed 20 odd years ago this was the case. I was introduced to a simplified 'exchanges' system, where fixed doses of insulin were matched with specified numbers of 10g 'exchanges' of carbohydrate at every meal. Even with that basic framework in place retaining good diabetic control is far from easy. Without, it is all but impossible. Consider this example:

Mr X, a newly diagnosed type 1 diabetic is told to administer 5 units of rapid-acting insulin to cover his evening meal and to eat low fat, high fibre diet which includes starchy carbohydrate. On Monday he has gammon, vegetables and new potatoes. On Tuesday he has soup and a wholewheat roll. Wednesday's meal is a wholewheat pasta bake. His meals, while in line with his dietary guidelines, contain approximately 50g, 35g and 70g of carbohydrate respectively, and yet he takes the same 5 units of insulin each time. One evening he is fine, another he goes hypo, another he ends up high. In 6 weeks he sees his DSN (diabetes specialist nurse) who tells him that his HbA1c is worryingly high and that he is having too many hypos. If his DSN looks at his blood glucose diary there will be a scattered pattern of highs and lows because, though the insulin doses are fixed, the carbs being eaten vary significantly and are not being measured or monitored. The amount of carbohydrate Mr X needs to match his fixed doses may be different to Mr Y. It may change over time, or if Mr X is more or less active than usual. But unless he is monitoring what he eats, he and his DSN will have no information on which to base informed changes to his regimen.

Some diabetics for whom 'MDI has failed' are put on insulin pump therapy. At which point they are automatically given instruction on carbohydrate counting, and rightly so. For many this is a lightbulb moment. But in all honesty there is little real difference in a 5 unit bolus given by pump and another by injection. Both will require a measured response in terms of carbohydrate eaten to avoid hypo- or hyperglycaemia.

I have no idea why it was thought better to give people less information to help them manage their diabetes. If you go back 15 years or so it seems everyone on insulin was taught the importance of counting carbs. When I was told by my own DSN that "we don't really do exchanges any more" I wondered what had replaced it. It horrifies me to think that what replaced a simple understandable framework was, in some cases, nothing. This can only have lead to poorer control, worsening HbA1c results and, by extension, more hospitalisations due to hypoglycaemia and a higher likelihood of patients developing costly (in all senses of the word) diabetic complications.

To advise people to take insulin without educating them about measuring the carbohydrate they need to eat in response is madness bordering on the negligent.

I urge Diabetes UK to work with the NHS and the government to ensure that every diabetic treated with insulin is given a simple framework of education, perhaps as little as a 10 minute consultation, that will help them understand the fundamental relationship between insulin doses, grams of carbohydrate and blood glucose levels.

Yours sincerely
Mike K

cc Dawn Primarolo MP Bristol South; Paul Burstow MP Minister of State for Care Services (inc Diabetes); The Editor, Balance Magazine

Update: If you reading this post has made you interested in carb counting yourself and your care team do not offer it, you might want to look at the Bournemouth (BDEC) online carb-counting course.

Update: The carb counting black hole

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.

Going on holiday

We've just returned from a great two weeks away. This year we gave the kids the choice of three different holidays. Options included a fortnight by a beach, a short break in Switzerland, but the winner was a combo of a week in Ironbridge in Shropshire, followed by a week in the Lake District.

Holidays are always a bit of a juggling act diabetes-wise. You are completely out of routine, you eat out far more often, wine flows, ice creams and treats beckon.

Thankfully Lantus continued to behave itself back in its morning slot. Staying in the UK meant there were no pesky time-zone issues, though I did have to gradually shift my injection time to suit our more relaxed holiday breakfast timing. Thankfully my first blood test of the day was pretty much spot-on most days. I even managed a little experimentation with post-breakfast spikes. I've settled on a new slightly higher insulin:carb ratio taken 20-30 minutes before breakfast, depending on my fbg (pre-breakfast) level. An hour or two after breakfast was mostly in the 8-10mmol/l region which compared to some recent disastrous readings felt pretty good.

The other thing about holidays is all that great wandering about you can do. Ironbridge is absolutely packed with things to look around, and it's almost impossible to visit the Lakes without doing some kind of walking about. The benefit of this, of course, is that you can sneak an occasional ice cream or cake to keep your levels up, without having to worry about injecting. Either that or I just gradually worked my way through a pocketed packet of Fruit Pastilles during the day. At Blist's Hill (the Victorian Town museum close to Ironbridge) I even managed to win a Sherbert Fountain by knocking it off a shelf with a pop-gun at the Victorian funfair. Initially I was a bit disappointed that these now come in a plastic tube, rather than wrapped in yellow paper, but the benefit was it lasted in my pocket until a wander around Ambleside and Skelwith Force.

I'd forgotten all about Sherbert Fountains... Hypo prevention has rarely been so much fun. It was like being 8 again.

Lantus problems and going round in circles

And on and on and on...

When we began writing about our experiences of living with Diabetes it was, at least in part, in response to a nasty overnight hypo brought on (I suspect) by the action of Lantus glargine. From some reading I have done since it appears I am not alone in this. That there are other people with diabetes using Lantus and injecting their dose at night time (recommended by the manufacturer and for most people the best option) who find they sometimes go low overnight, or wake up low in the morning.

One of the difficulties in managing diabetes with MDI (multiple daily injection) basal-bolus is that if you don't get your basal (background) dose correct then everything else becomes incredibly difficult to manage. You have no firm footing on which to start your day.

I think the late-at-night injection timing is suggested because it puts Lantus's onset period (perhaps an hour two until full strength) at a time when you have finished eating for the day and are usually if not actually asleep, then pretty much at rest. When I moved my injection to the morning, though my overnight levels were suddenly very steady and reliable, I had problems with high blood glucose spikes after breakfast. In response I began to split the dose, morning and evening, having a little just before bed, and the rest at breakfast. My hope was that this would spread the activity more evenly over the day. Sadly though, after a few months I can see that this has caused more problems, and not really solved anything. I found I was waking up low again, or waking slightly clammy having gone hypo overnight. On several occasions my liver then took matters into its own hands and began dumping glucagon into my bloodstream as it's own emergency measure. I would wake high, inject rapid-acting insulin and wait until my levels dropped before eating breakfast. After 2 hours or so I would give in, my levels still stubbornly high, eat a fraction of my usual breakfast and wait to see how things were going at lunch. Not only that but if the smaller Lantus dose didn't send me hypo overnight, then it had run out of steam by breakfast anyway and I was heading for spike central again after breakfast. Smaller doses you see, tend to act over a shorter time. With no Lantus hanging around, and anything from 15-45 minutes for Humalog to get going even a fairly low GI breakfast was going to cause problems. What my neice might describe as an #epicfail.

So I've gone back to Lantus in the morning. Suppertime and pre-breakfast readings are more constant. The post-breakfast problem still exists, of course, but at least I've lost the overnight hypo and liver-dump double whammy. Last time I didn't spend much time experimenting with the timing of my breakfast bolus (rapid-acting) doses. My hope is that with enough time between injecting and eating I might be able to stay out of the teens between breakfast and lunch.

Maybe.

Walking the line (or why I don't like Mondays)

The other day I was reading on a forum where a fellow type 1 diabetic was struggling with a GP who was unhappy that they were testing too often.

Testing too often...

Someone else's GP had made a suggestion that anything more than two or three times a day was really a bit much. Actually I think they had talked their GP up from a prescription of 50 strips for 2 months. That's not much more than once a day. And certainly doesn't seem to acknowledge the DVLA guidelines for testing before (and every two hours during) any driven journey.

Sometimes it seems GPs just don't understand what it's like to live with diabetes day to day. Here's how it feels:

In the southwest of the UK there is the busy 'North Devon Link Road', for much of its length overtaking is forbidden by a pair of white lines down the middle just a few inches apart. Being a diabetic is like being asked to walk along that line. Blindfold. And backwards. As it twists and turns you'll have to avoid straying into the surging hypo-traffic rushing up on you from behind, or the thundering diabetic-complication lorries bearing down on you from ahead. A few times a day you are allowed to peep out from under the blindfold to see where you are and make a correction. Though if you look more than 6 or 7 times a day your GP may well say that you are looking a bit too often, and they have read a report that said it makes your walk more difficult. You just need to try a bit harder. Or you are trying a bit too hard. You should try walking a bit more towards the lorry side for a while. In fact what you really want to be able to do is to cut some little holes in the blindfold. But unfortunately those CGMS scissors are far too expensive. If you are lucky you might get one for a week, but if it's an old pair the doctor would look though the holes at the end of the week, then sew them up again.

Sometimes for all of us the road is wigglier than others. The traffic is especially heavy. The strategies and methods you usually rely on don't seem to work at all. Or work way too much. The road-walking equivalent of a dizzy spell.

The current cloud on my weekly horizon is Mondays. I seem to need a different set of insulin:carb ratios to avoid drifting teen-wards all day. Especially bad in the mornings, by evening meal while trying to correct I can overdo it and then drift low. Monday is the day furthest from a usual gym session, which might have something to do with it - exercise has a knock on effect for me for quite some time. I'm still having a tricky time of things working out what the current Monday ratio needs to be. I could tell you what it was a few months ago, but that doesn't work at the moment.

And that dear GPs is why we need to test so often. Very sorry if that is slightly financially inconvenient for you.