Type 1 Diabetes - a 30 second guide for busy journalists and scriptwriters

Too busy even for the introduction? Click here!

OK. Enough really is enough.

Over the past 24 hours I have seen a *lot* of comment about a piece published in a major online newspaper site yesterday. It is a site that often seems to struggle to get the basics of diabetes the right way around - and it is not the only media resource to struggle, not only that, but TV and movie scriptwriters usually get it just as wrong too. I guess it's understandable... before diagnosis I knew *nothing* about T1 Diabetes either. But if you are going to write about it, it would mean an awful lot to all the people living with the condition if you could just spare 30 seconds to get your head around the basics first.

The story concerned a woman who was forced to leave a popular high street fast food outlet because staff mistook her insulin injections for drug abuse. Thankfully it was rapidly corrected by the site in question following a slew of complaints from PWD. The following snippets have been quoted elsewhere from the original version:

"Sarah P, 36, ordered a Big Mac from the fast-food chain last Friday and used her EpiPen to inject herself with insulin to increase her blood sugar level before tucking into her meal."

Type 1 diabetes accounts for ten to 15 per cent of all people with the condition and if they do not inject enough insulin through the day it can lead to a state called hypoglycemia."

I've marked the obvious errors in italics. Inaccuracies that might cause fatalities elsewhere if someone decided to be a 'have-a-go First Aid hero' are marked in bold. I am given to believe the full article contained many more.

I realise that journalists are busy people, so I've put together this 30-second guide to Type 1 Diabetes. That's a full five seconds per bullet point and five seconds to rest at the end.

1. Type 1 diabetes is an autoimmune condition unrelated to diet or lifestyle and while commonly diagnosed before the age of 18 can occur at any age of life.

2. Successful management of Type 1 involves avoiding both hypo- (rhymes with LOW) or hyperglycemia (HIGH blood glucose)

3. Insulin drives blood glucose levels down.

4. Carbohydrates (especially sweet/sugary/non-fatty foods) push blood glucose levels up.

5. Almost all 'emergency' situations the public will encounter are likely to involve LOW blood glucose, treated by a sugary drink, glucose tablets, fruit pastilles or jelly babies. Administering insulin under these circumstances is potentially fatal.

So there you go. Not too hard was it? Feel free to pop off and have a celebratory tallskinnycappufrappuwhatnot.

It's all about the balancing act to keep the little green ball in the diagram above centred between the two bars of nastiness. Too much insulin and blood glucose can fall to a level where the brain cannot function properly leading to confusion and sometimes convulsions or unconsciousness. The remedy is simply to raise blood glucose levels with something sweet. Preferably liquid. Hypoglycemia, low blood glucose (if you still don't get it, think hypo-allergenic) is usually swiftly treated by the person themselves, but if you come across a Type 1 behaving very oddly or aggressively, not making sense, slurred speech and sweating profusely - the chances are all they need is a few swigs of Lucozade and in 10 minutes they'll be as right as rain.

Hyperglycemia, high blood glucose (still struggling? think hyper-active) is usually caused by either too much food or not enough insulin. It is annoying, but does not usually present any immediate danger - apart from the fact that the T1 in question is likely to be a bit grumpier and thirstier than normal. Long term though, over several years, it can cause all sorts of nasties... blindness, amptuation, stroke, kidney failure, neuropathy and a host of other 'diabetic complications'.

Of course there's quite a bit more to it than that, and before anyone chips in, yes of course I realise that there are some very urgent medical situations that involve high blood glucose levels leading to DKA, but let's just get the basics in place first and then work from there eh?

If you are hungry for more detail you could always download the Diabetes UK "Reporting on Diabetes: A Guide for Journalists"

Annual reviews and first appointments - A guide for junior Doctors,trainee DSNs and other HCPs

To state the ridiculously obvious - Type 1 diabetes is not always very easy to live with.

The relentless requirement to monitor, juggle and account for a hundred-and-one variables (food, doses, exercise, weather, stress, hormones... you know the drill) while trying to live a relatively normal life day to day can be quite a frustrating business.

It is a great comfort to know then, that we have a number of ferociously clever and wonderfully kindly professionals that we can regularly visit who are dedicated to supporting us in our daily battles with the big D. Most of us will only get a precious few hours a year to receive this input, so it's important that we can make it count.

A month or so ago someone who I consider to be quite a good friend (which is odd really since our contact has only ever been of the remote and electronic variety) shared an experience of an appointment with a young and perky Registrar which, from what I can gather didn't work out too well. I think it's fair to say that my friend has now - some weeks later - just about managed to come down from apoplectic-teeth-grinding rage into the significantly calmer strangers-crossing-the-street-to-avoid-thunderously-angry-expression.

This got me thinking about what it is that we long-term pancreas-impersonators (or newly diagnosed for that matter) might hope for out of our precious appointments. If you've not done many D clinics before (or even if you've been running them for years!), here's what I would hope you would bring to the party:

Hello
First impressions count. I've met a lot of HCPs for first-time appointments and you would be surprised how many don't introduce themselves. It's a busy clinic, I realise I may never see you again, but it would be nice to know who you are.

Please, please, please just take a moment before I come in to skim read my file. If you are checking that information is up to date then be a bit careful of how you ask those questions. "So... you have type 1 diabetes?" might seem innocent enough, but some people you will be seeing might have been living with their condition for longer than you've been alive - so it's not really a question that needs to be asked. T1D isn't really something that's going to go away. Know my type. Know how long ago I was diagnosed. Know what direction (if any) my HbA1cs have been moving recently and what insulin(s) I am using. If you are checking records for accuracy and up-to-dateness, tell me that you are checking. Otherwise I'll think you are an idiot.

It isn't your fault
This is slightly unfair, but I'm afraid there's nothing to be done about that. You have no way of knowing what sort of horrendous appointments I have endured in the past (I haven't actually, but many have). The last thing we both want is for the steel shutters to come down behind my eyes and for me to descend into 'smile-and-nod' grunting, just waiting to leave - that will do neither of us any good. Here are a few of the states-of-mind in which I have arrived at appointments over the years:

• I have identified a problem or issue and I have no idea what to do about it. I'm hoping for suggestions.
• I have identified a problem or issue and I am working on it. Your suggestions might be something I've already tried and found not to work.
• I have identified a problem or issue and I think there's a gadget/change of insulin that might help.
• I know things have been going OK recently and just want my results, thanks.
• I know my results are a mess and hope I'm not going to get some kind of telling off. Don't you understand how impossibly difficult this is to do day to day?
• I'm past caring, nothing I am doing seems to make any difference and previous clinic suggestions have just made it worse - I would ask about psychological support, but what's the point?
• I don't have time for this and want it to be over as soon as possible.

You will need to develop a forensic, interview technique to glean from my merest eyebrow twitch which of those states-of-mind I am in. Alternatively - you could just come right out and ask me at the start - there's a thought. Ask open questions, be interested in the answers. Diabetes is not always textbook, you may know a lot about diabetes that I don't, but I'm the one muddling along with my diabetes 24 hours a day. As we say in the DOC - Your Diabetes May Vary. Most often I'm not expecting you (or even wanting you) to give me definitive answers, but rather to suggest strategies, principles or techniques that I can try out. And be asked about what sort of level of support and follow-up I want.

Not a number
I am not my numbers. I am not my A1c, my high this day, my low that day. These are information, but they don't define me and certainly don't necessarily represent the amount of effort I am putting in. Ask me what I'm aiming for, and why. If you think my A1c is too high or (too low) don't say anything until you've found out what I think about it. Ideally you've already picked up some story-so-far clues from my file (see 'Hello'). There is always ALWAYS something to improve. I want us to work together to make my numbers just a little bit better by the time my next appointment comes around, but I don't need telling off. Ever.

Questions, questions
Questions are your friend - I know you know this already, but it is worth restating nonetheless. Ask me what I am looking for. Find out what I am already doing (or considering starting) to try to reach my goals. That way you'll be in a better position to give me some really helpful pointers. You'll realise, of course that I may have come in with my guard up. You might have to tease the truth out of me, but asking the right questions will make us feel like more of a team - that you are on my side. Be especially careful if I have brought in any information, charts, print-outs and so on - you would be astonished how often these carefully prepared sheets are simply brushed aside. Pay them attention - ask me if there's anything I've spotted that needs looking into. If you spot what you think is a pattern, ask me whether I think it is significant and if not, why not. Sometimes type 1 diabetes is just random and frustrating, but a fresh pair of eyes and a healthy discussion about tactics and options can be just the thing to open up a new line of experimentation. Think of yourself as a top-flight Premiership football coach. Talk to me about strategy, technique and tactics rather than how far to kick the ball.

Never assume I know something
You may be up to speed with all the latest diabetes management techniques and fully immersed in decades of diabetes research. As a long-in-the-tooth patient, you would be forgiven for believing that with all my years of experience I am bound to have come across all this knowledge already. Carb counting... basal testing... dawn phenomenon... difficult foods... correction and insulin:carbohydrate ratios... I may know about these, but ask a carefully phrased question to assess my current approach to challenging day-to-day management situations in order to fill in any blanks I may have in technique and understanding. Once again the questions are crucial - otherwise we are into dangerous chicken-ovulation-inhalation territory.

Never assume I know nothing
Obvious really. But few things will sour our fledgling relationship quicker than you assuming that I have no idea what I'm doing. You never know... I might be one of those people who has read many of the academic research papers that are freely available online these days. I might have spent time keeping up with developments in technology, treatment and even the minutiae of NHS funding options because this stuff really matters to me. I may even have some interesting opinions - it won't hurt to ask.

Never assume. Anything.
That's your 2 second 'lift test' right there. If this is the only bit of this post that you remember, then we'll get along fine.

What about anyone else? Any hints and tips for HCPs for the perfect first appointment? As ever, comments welcome below.

mySugr Review - The best Diabetes logging app ever?

When we began this blog almost exactly three and a half years ago (crikey!) I had just made two important and, in their own small way, utterly life-changing discoveries.

One was that I wasn't anything like as good at managing my diabetes as I liked to think I was. And the other, and perhaps more important, was the extraordinary power, knowledge, support and cameraderie of the DOC hive mind. At that stage I felt that my control was 'as good as could be expected' and that diabetes was just pretty random every now and again. Years later I now understand both of those statements to be completely true, but in a very different way - and with the benefit of signficantly better control and confidence in handling my diabetes.

One of the main changes I made at that time, and perhaps the one that transformed my self-management more than any other, was to start testing more frequently, and to record the results more systematically. This information then enabled me to spot patterns in the apparent 'randomness' and apply the knowledge & experience of the DOC to experiment with the whole 'pretending to be my pancreas' business. Identify a problem... find out what others do... experiment... try something else... develop a strategy... test... review... adjust. None of that would be possible for me without a decent feed of data to try to keep track of the million and one variables.

At first I used the ever-faithful pen and paper route, which is fine in its way, but doesn't really let you do anything with the information you are so carefully collecting. Shortly afterwards I started using different apps on iPod Touch and later iPhone (other smartphones are available etc...). I must have tried the best part of a dozen apps in quick succession before settling on one which allowed me to log and track everything I wanted to without making me want to chew off my own fingers in the process. A couple of years ago I saw a mention by Mike Young of Diabetes in Spain about an app he was using called mySugr so I had a look. I've been using it ever since. Recently they launched a major upgrade as v2.0 and to my mind mySugr has now become something really rather special.

Overview
Well let's see...

Fast/easy data entry? Yup.
Pretty graphs? Absolutely!
Useful averages over different time frames? All present and correct.
Additional analysis like SD and number of high/low readings? Correctamundo.
Suitable for pump users? Certainly.
Export data in a variety of formats? Of course!
Fun? Yes!

Erm.... what?

This I think was the biggest difference I found when I first started using mySugr. The team behind it (which includes quite a high proportion of T1s) understand that logging, while potentially *very* useful is not the most fun to be had. Underpinning all mySugr's seriousness and analytical clout is a healthy dose of wit and charm. When you first set the app up you choose a name for your diabetes monster and every time you make an entry you go some way to taming it day by day. They turn diabetes logging into a sort of game, scoring points with every entry made. This may not appeal to you from the outside, but there is something inexplicably smile-inducing about the animated gurgling reactions of your monster when you make an entry - especially one that is above or below your ideal range, which is exactly when I need distraction most.

mySugr allows you to log all the things you would expect - BG (in mmol/L or mg/dl), carbs (in exchanges/CPs or grams), meal boluses, exercise/activity, basal dose for those on pens/syringes and temporary basal rates/duration for pumpers. Naturally you can also make copious notes alongside your entries which I find essential in terms of interpreting the data later. In addition you can also capture photos of meals and even add the geographical location at which the entries were made which is a nice touch. Entries can be tagged with one or more predetermined icons which range from the inevitable 'breakfast' and 'sport' to more emotional options like 'stress' or 'chilling' adding further detail to records. A very useful 'search' option allows you to quickly scan back through months worth of entries to find what you last tried for 'pizza' or 'chinese takeaway' then jump to those records to see how it went and what you might try this time.

mySugr operates on a 'freemium' basis. The fundementals of the app are available absolutely free of charge, but full functionality (eg photos with records) requires a 'pro' subscription. When you install the app you get all the bells and whistles for a few weeks. Following that you can just use the (excellent) core functions, pay a small monthly fee to upgrade to pro, or complete motivational 'challenges' to earn days of pro subscription for free by logging several entries per day or exercising. EDIT: As of January 2014 mySugr seem to be moving away from a subscription-for-pro set up towards a single payment model.

The data analysis on offer in mySugr is excellent. The home screen (above) gives you a general overview of how things are faring over the last week/24 hours in different ways. The graph itself recolours to give you instant feedback if things are altogether too high/low (red) or a bit marginal (amber). There is a logbook screen with pleasingly swooshy draggable graph and table of entries that allows you to quickly scan back through previous week/month - the graph dragging side to side as the table of entries scrolls up and down. A separate analysis screen allows you to see 7-day, 14-day and month-by-month changes in average BG and crucially the SD of those entries (how closely grouped or wildly scattered they are). Dig a little deeper and you'll see a summary of numbers of high/low readings, tags, photos and other useful detail to help you work out what has been going on. If you enjoy your own number crunching and/or want to amaze and impress your clinic with how marvellously you are getting on you can choose between different .csv formats for Excel or export your data as a slick PDF report.

mySugr is registered as a 'medical device' and CE marked (I think it is perhaps the only logging app to have achieved this). Data storage is safe and secure and the entries are seamlessly uploaded and synced in the background. I experimented early on with this and if no data connection is available mySugr will just wait patiently without pestering you until a connection becomes available. If you own more than one device you can log from whichever is closest to you at the time and the data will stay in sync on all of them.

What? No niggly complaints?
If you've read a review here before you will no doubt be waiting for the 'but...' followed by a long list of things I really hate about mySugr. Well it surprises me as much as it might you that I can hardly think of *anything* I would change about the app. I would love to be able to edit the preconfigured list of 'tags', either to just hide the ones I'll never use, or preferably to allow me to customise the text myself. The options they have are decent enough, customisation would be perfect - I gather this is on the 'wish list' for future versions. There seems to be a slight glitch with data export for Excel in that dates are coming through as text rather than an Excel-friendly timestamp. This has almost no relevance to any other user I'm sure, but it makes some of my occasional attempts at analysis/graphing in Excel go a bit wonky. I'm going to drop them a line about that, and it's just the sort of thing they fix in one of their version updates. (Edit: as expected, this has now been fixed!)

So I quite like it then?
I noticed something a few weeks ago that really surprised me. The way mySugr helps me keep track of my readings actually helps me improve them in a way no other app has done before. There is a sort of 'sliding scale' of reward and motivation going on that on one level just lets me know if things are slipping a little, but then - even when they are pretty much perfect manages to encourage me to keep trying harder. That's not a bad effort for some lines of code, comedy noises and a sprinkling of funky graphics. In general terms the BG average and SD over 24 hours 7 days, 14 days or month-so-far offer me a ready reckoner of how well (or badly!) any time period is going. I have a tendency to think 'things have been terrible for ages' so it can be encouraging to look back a few days and see that results were not so bad after all and a little basal testing will probably fix things.

Aiming for amber
For about a quarter of this year things were not going well for me diabetes-wise. Looking back it wasn't a disaster (see previous para) but every month I'd hope for a better average, lower SD, fewer highs and fewer hypos only to find that the results would be slightly worse not better than the previous month's. Despite the fact that I felt like I was trying harder. This is not particularly encouraging... But following my annual Pump Clinic at the end of June where I made some small basal and ratio tweaks things all seemed to slot into place. Day after day with bewilderingly good levels. I felt like I was winning. Even when we were away on holiday (a notoriously chaotic experience for my BG in previous years) I pushed to maintain this success*. Why? Well during this period I began to notice the 'high/low' marker on mySugr's home screen (see the big picture above) was no longer it's customary Red. Quite often it was Amber. Once or twice it was even Green! So in a rolling 7-day period I would find myself pushing to avoid a high or low reading that day, because if I could make it with a 'no hitter' then tomorrow the wobbles from this time last week would disappear and I'd be in amber again. I was playing my diabetes like a game.

The fact that my logging app was providing that motivation should make the folks at mySugr very pleased indeed.

mySugr is available for iOS devices in the App store and an Android version is currently in 'beta test'.

Final score: 5/5

* Fear not. Normality is resuming this week... along with some set failures and hilariously jaggedy mySugr graphs that well and truly revoke my #teamsmug membership.

Disclosure: I wasn't paid to write this review and I have no commercial interest in mySugr at all. I was lucky enough to be one of the beta-testing volunteers for 2.0 and have spoken to Frederik a couple of times but that's it.

All supporters need support.

Mine is a supporters voice. As Mike's wife I would like to say I am there to support him in all that he needs. I try; though I freely admit to getting as fed up of diabetes as everyone else, I am not a particularly patient person. Anyway, I think the point is that I try. I'm pretty sure we all want to try, all us supporters; but it is not straight forward.

I recently met with a friend who was diagnosed with diabetes over ten years ago. I visited him in hospital, he had pneumonia along with a heap of complications which sounded suspiciously diabetes related. I asked him whether he had type 1 or type 2. He said, "I don't know." I'm not sure how well I hid my shock, I was pretty much lost for words. My friend lives with his mother. He was diagnosed when he was thirty. He is not adept at communication.

I also know his mother, who I am sure has all the feelings that any mother has when they find out their son has diabetes. I know from Mike's mum that that can include guilt, fear, and the desire to wrap in cotton wool and never let out of her sight ever again. My friend, unlike Mike, did not talk to his mother, and his mother, unlike Mike's, did not like to push for answers to the thousand questions simultaneously forming in her head. She has had to cope alone. She hasn't felt able to admit that her son's inability to communicate has left her at a loss as to how to support him. So what she does is try to look after him. She makes sure he always has a good big bowl of cereal for breakfast, and that there is always a choice of puddings on hand after his evening meal. He happily tucks in. The only piece of advice from a dietitian she has ever been present to hear is that a combination of grapes and banana is a really bad idea.

As the mother of a diabetic diagnosed in adulthood, she has never received any support. Mike's mum was in the same position, but blessed with Mike and then of course I came along and took him off her hands, again with no support and it is scary, but Mike helped me through. I am aware that Mike and my friend are at opposite ends of the communicative spectrum, most people must be somewhere in the middle. Mike is on his way to a long, healthy life, I wouldn't be surprised if he outlived me (my family have a history of heart disease). My friend is on his way to dialysis, losing his sight, losing his feet and dying before his mother. I believe his control would be greatly improved if his mother had been offered support. My guess is that most adult diabetics don't live alone, that many don't cook their own meals, so the responsibility for the control of their condition does not fall entirely in their hands. It can and should be shared.

All supporters need support.

Diabetes Week - Artificial Pancreas Project

It's Diabetes Week in the UK this week and after my rather forlorn post about the apparent disappearance of C8 medisensors non-invasive CGM last week I was pleased to read this little update on the Artificial Pancreas Project (APP) from Diabetes UK today.

It's still reasonably early days, and to my mind we are still quite a way off a 'real' management solution, but step by step people are cautiously being allowed to hand over the reins overnight to an automated system in their own home rather than under strict lab conditions with technicians standing by the bedside clutching Lucozade and NovoPens.

For those of you who have *no* idea what I am going on about, the Artificial Pancreas Project is seeking to 'close the loop' between two clever bits of diabetes kit. A Continuous Glucose Monitor (CGM) that can measure glucose levels and an insulin pump that can provide varying doses of insulin. In fact most people who happen to see my pump tend to assume that we are there already, and assume that a pump will just somehow 'know' how much insulin is needed and provide it automatically. Sadly it's not quite that easy, and while an insulin pump is a brilliant therapy option it does still require a fair amount of effort, guesswork and to be honest more than a little luck in balancing all of the hundreds of variables involved in day-to-day BG tomfoolery.

Part of the problem with the APP of course is that the technologies involved are improving, but still rather less than perfect. Continuous Glucose Monitors make an estimate of blood glucose levels based on glucose concentration in interstitial fluid (the stuff sloshing around between cells in tissue). This tends to lag a bit behind actual BG values, and those lucky enough to have access to CGM will know that what you are really getting is 'trend' information rather than the accuracy* of blood-based fingersticks. CGM manuals/marketing are usually pretty clear that any doses/corrections made should be done after confirming results with a fingerstick test. But the closed loop system needs to use this very same stream of trend information in order to make dosing decisions.

Currently the human trials of the APP are showing relatively promising results for looking after things overnight. To know that you had a smart system carefully tweaking your levels while you slumbered would be fantastic, but of course a full Artificial Pancreas would have to go much further and tackle the thorny issue of mealtimes. Personally I think we are a looooong way off that. For one thing current 'rapid' analogue insulins are hopelessly inadequate for the task. They take far too long to get going (1 hour for corrections to start taking effect anyone?) and act over far too long a time period to give a bunch of electronics, however smart, the ability to take over entirely.

What I would hope for instead is a commercially viable 'smart pump' which combines much of the effort and user knowledge/experience that currently goes into effective pump use, but with automated AP trickery to take the edges off the errors and irritations of daily pancreas impersonation. A system whereby you would bolus for meals, set TBRs for activity and generally do the basics, but the pump would be constantly monitoring how things were going and have the ability to tweak things and make corrections to keep things on a more even keel.

Now that really would be something.




* It should be noted, of course, that fingerstick BG tests in themselves are not particularly accurate and only really serve as a general guide as to what is going on.

Has the light gone out on C8 Medisensors optical CGM?

Someone left a comment earlier today asking if I knew any more information about the C8 Medisensors non-invasive CGM, which was given CE mark approval late last year. Some of you may remember me getting quite excited about it after having seen the device in action.

At that stage, the general expectation seemed to be a European launch in the Spring of this year. In January I got wind that the launch had been put back slightly to allow for 'further enhancements' to be made prior to the launch in mid-2013.

I've had a little look around the internet, but all I can find are reports/stories from late last year. Trying to look up the C8 folks I met via LinkedIn suggests that they stopped working for the company in January this year. It seems that at about the same time John Kaiser took over reins at the company - so what happened then?

With an increasing sense of doom, I realised that their website seems to have gone offline in the past few months too.

To be honest, I'm gutted.

Just wondering if anyone knows what the story is? I really believe that their non-invasive CGM, if it lived up to the promise shown, genuinely had the ability to completely change the landscape of diabetes care across Europe, and CGM pricing/availability in particular. £2000 for 4 years, rather than £3000-£4000 every year would put self-funded CGM within the grasp of many more people in the UK. A currently frustrated and untapped market.

I can't have been the only one waiting for lauch with one hand reaching for my wallet.

Anyone from C8 Medisensors out there?

Splish splash - aquapac insulin pump case

The sun is shining... thoughts turn to Summer holidays.

This year we will be returning to Cornwall, to the very same place we stayed a few years ago. When we were there before the girls and I quite fancied a little gentle sea-kayak pottering in the wide open bay on our doorstep but never quite managed to bump into the kayak hire people who seemed to have a rather relaxed approach to timekeeping (and attendance in general). This year we are hoping to give it another go.

The last time we were there I was on MDI, but this time, of course, I have Artoo to think about.

I don't suppose we will be out for very long so I could just detach and leave the pump on the shore. I suspect there will be enough activity involved in paddling to make hypos more of an issue than raging highs, so the lack of basal for an hour or so would probably not be much of a problem. But... what if something happened. The last thing I'd want if anything untoward were to occur would be to be bobbing about awaiting rescue with the added 'excitement' of being just a few hours from DKA once my last bit of basal runs out.

Having asked around I've had very good reports of the Aquapac waterproof pump case, so I've decided to order one. The case is clear so I will be able to check on how Artoo is doing and it's waterproof enough to cope with anything from a bit of gentle splashing to some full-on dunking - for a short while at least!

All we have to do now is hope the kayak hire people actually turn up!