Frestyle Libre available on prescription. Again.

It's with a certain sense of deja-vu that I mark World Diabetes Day this year with the news that Abbott's Freestyle Libre flash glucose monitor will become available to people with type 1 diabetes in the UK on prescription from April 2019. Cue inevitable Twitter meltdown.

Hang on... haven't we been here before?
Well yes. And no. You may remember me writing a post in September last year on this very subject.

Technically the Libre was made available on prescription on 1st November 2017, "subject to local healthcare economic approval". Prior to that 2017 announcement various Big Health and Diabetes Organisations (such as the Regional Medicines Optimisation Committee, NICE and a collaboration of Diabetes UK, ABCD, JDRF and INPUT) put together helpful documents, guidance and national position statements about what Libre was, who it might be useful for and the evidence to support its use.

What followed was an unholy scrabble of various different CCGs across the UK who either adopted Libre under RMOC criteria, published their own set of rules (which often had bizarre additional requirements that seemed to bear no relation to Libre and its use, such as blood pressure results) or denied access entirely saying that there wasn't enough evidence, or that they didn't like the colour of the packaging or any number of "Whatever we do, let's kick this can as far down the road as we can manage" strategies. And all the while those CCGs in the 'no' camp had meetings and re-reviewed the evidence that had already helpfully been reviewed for them, and invested time (and presumably money) into reinventing all the wheels they could see.

So what emerged was variously described as a 'postcode lottery', 'Libre lotto' and 'bloomin outrage' and across the country people living in the (at the last count) 51 CCGs to have said a big fat NO to prescribing Libre got together and organised themselves to petition, badger and generally make a fuss about it.

Meanwhile, in areas where Libre was more freely prescribed, the early results were overwhelmingly positive. HbA1c's tumbled, and importantly positive effects were seen at all starting points, with significant improvements being seen in those who hardly checked BG at all as well as those regularly checking 6-8 times every day.

And the results didn't begin to tail off after an initial positive surge either. As more data were added, the improvements were sustained and improved further.

Meanwhile the irrepressible, unstoppable force that is Dr Partha Kar was not for taking 'no' for an answer. If the evidence was sufficient for area A, why was it deemed insufficient for area B just down the road? Gentle pressure was applied with an NHS England behatted sledgehammer and a smile. Additionally everyone's second favourite Libre-prescribing-data-muncher Nick Cahm quickly became errant CCG's worst nightmare as he quietly and eloquently sifted through mountains of information to show how utterly nonsensical some of these local decisions were. And Diabetes UK weighed in to support and rally local people in their #fightforflash. The CCGs didn't stand a chance really.

And so today, the biggest of NHS bigwigs Simon Stevens joined in to announce that Libre will be available nationwide under RMOC guidance from April 2019:

“As the NHS prepares to put digital health and technology at the heart of our long term plan for the future, NHS England is taking important action so that regardless of where you live, if you’re a patient with Type 1 diabetes you can reap the benefits of this life improving technology.”

So who exactly will have access?
As far as I am aware this is the guidance (or something quite like it) that will be used to identify appropriate people with diabetes who will benefit from Freestyle Libre going forward:

It is recommended that Freestyle Libre® should only be used for people with Type 1 diabetes, aged four and above, attending specialist Type 1 care using multiple daily injections or insulin pump therapy, who have been assessed by the specialist clinician and deemed to meet one or more of the following:

1. Patients who undertake intensive monitoring >8 times daily
2. Those who meet the current NICE criteria for insulin pump therapy (HbA1c >8.5% (69.4mmol/mol) or disabling hypoglycemia as described in NICE TA151) where a successful trial of FreeStyle Libre® may avoid the need for pump therapy.
3. Those who have recently developed impaired awareness of hypoglycaemia. It is noted that for persistent hypoglycaemia unawareness, NICE recommend continuous glucose monitoring with alarms and Freestyle Libre does currently not have that function.
4. Frequent admissions (>2 per year) with DKA or hypoglycaemia.
5. Those who require third parties to carry out monitoring and where conventional blood testing is not possible. In addition, all patients (or carers) must be willing to undertake training in the use of Freestyle Libre® and commit to ongoing regular follow-up and monitoring (including remote follow-up where this is offered). Adjunct blood testing strips should be prescribed according to locally agreed best value guidelines with an expectation that demand/frequency of supply will be reduced.

It will be very interesting to see how this works in practice, and in particular whether this framework allows widespread adoption of Libre2 when that launches in the UK (at the same price as Libre1 apparently), which gives Libre users the option of alerts to prompt scanning when BG rises or falls to particular limits.

Roll on April!

No two days - Diabetes Week 2018

Ugh. Good morning to you too.

Apparently this week is Diabetes Week.

Me neither.

If I get the chance I will try to rattle in a post about the excellent #languagematters work that is being launched this week which hopefully will provide useful pointers to healthcare professionals and people living with diabetes who are trying to have more positive, more enabling, less stigmatising conversations.

In the meantime I have other things on my mind. Because as I posted recently on Twitter my diabetes has been behaving in a peculiarly cantaknerous way recently and I don't see why I should suffer that alone, so I'm inflicting it on you lot.

We've toyed with a few different straplines for our blog over the years, before we settled on the current one, "Because no two days with type 1 diabetes are the same. Except when they are." Which I liked because it was a) slightly annoying and b) didn't really make much sense. Both attributes shared by type 1 diabetes itself.

It is part of the unending joy of playing at being your own pancreas that you are perpetually caught in the tension between the illusion of 'diabetes maths' (deliver x units of insulin to process y grams of carbohydrate plus or minus z percent for activity/illness/alcohol/whatever) and the reality of living with a condition where the sheer bewildering number of variables that might combine, contradict, multiply or cancel each other out, when trying to calculate a precise (or sometimes wildly guessed) insulin dose, mean that it can be extremely difficult to work out why things have gone well, or not quite so well.

As a defence, some of us pancreas pretenders with a few years under our belts attempt to find some ways of reducing the number of variables without expiring from sheer boredom. It's a kind of coping strategy and it can work quite well up to a point. I have eaten pretty much the same breakfasts and lunches for more years than I care to remember. A regular rhythm with slight differences for weekdays and weekends (craziness!) but generally, more often than not, a known number of slices of a single brand of bread along with a medium-sized apple at lunchtime, and a not very adventurous range of fillings/toppings. It is functional eating. Designed to be predictable. Well tested. Evening meals I tend to eat a much wider variety.

And this regularity provides a useful touchpoint. Because as I said this strategy is only successful 'up to a point'. And that point is where something else changes. You have the normal food, you take the normal dose alongside the normal background insulin and the normal level of activity. But suddenly you see anything but normal blood glucose outcomes. If everything is changing all the time, with all sorts of different meal choices/fat contents/dose requirements, it is much harder for me to spot when my diabetes has joyfully shifted the goalposts (again!) and when I need to slightly adjust basal dose or meal/correction ratios.

I've been happily using this technique for years now. And my diabetes and I have got into a sort of gently seething stalemate. I fix the ratios/basal/correction factor. A week or two pass... a small basal tweak is required... then another... then another... And every month or three perhaps a larger overhaul might be required. The basal pattern might slightly change shape, or carb ratios and correction factors may need to be adjusted. Blood glucose normality (Ha! By which I mean the generally expected levels of BG chaos) resumes. Up a bit... Down a bit... Down a bit... Back up a bit. And so my diabetes world turns.

Something odd
More recently I have been seeing something much more unusual, unexpected and irritating going on. But such is the chaotic and fickle nature of living with type 1 diabetes, that it's taken me a while to even spot it was happening, and realise that over the past 2-3 months it has been developing into a bit of a pattern.

The perils of CGM
In a sense, I wonder if I might have spotted it sooner if I'd had less access to CGM. It sounds bizarre, but the difference for me between living with CGM and living without it is that CGM frees me from needing my diabetes to behave predictably. I am able to roll with it and adjust as I am going along much more freely. But that freedom, ironically, may come at a price. Without CGM, I need my diabetes to be much better behaved. I need to know that I can do x and (more or less) expect y to happen without watching it unfold, or being alerted if things are going off-track. I've only been wearing CGM occasionally this year, but it's probably been 50-60% of the time. And that's a lot of weeks of 'adjusting on the go'. Having run sensor-free for 2-3 weeks I realised how much I had lost my fingerstick BG mojo (especially after a full year with quite heavy CGM/Libre use in 2017).

When the weirdness started happening and I was wearing sensors I just worked around it. It has only been since running sensor-free for a few weeks that I've needed to look at the root cause to try to get things back onto an even keel when I'm not able to watch what's going on between the dots.

Pattern spotting
What seems to be happening for me recently, at lunchtime and even moreso for evening meals, is that the speed of absorption of previously predictable meals has substantially changed. While I used to be able to take doses all up front with 20-30 minute delay before eating at lunchtime, and immediately before eating evening meals, I am now needing to use dual waves to substantially delay insulin delivery so that the late arriving food still has insulin available.  What had been happening was a post-meal period where an initial sharp BG rise was followed by a prolonged dip (needing multiple carb top-ups to prevent hypos while the meal dose was working at full strength) followed by a later rise into double figures as the food absorbed when the insulin was on it's way out. Many T1s will be familiar with this 'pizza effect' where the fat delays carb absorption - but suddenly I was seeing it with previously very predictable and cooperative foods.

I can't explain why this has suddenly become necessary. I'm not sure I even care to be honest. Especially since breakfast seems to have been entirely unaffected and is proceeding as it always has. Typical type 1 diabetes. It can't actually make sense. It just has to set new 'rules' for that thing, but leave that other thing as it was. And in another month? It could all change again!

The good news is that I have made some decent progress in the past few days to find a set of splits and timings of dual wave doses that seem to be working better for lunches and evenings (and reduced dose ratios to boot). I will pop a sensor to see a bit more detail in the next few days.

Hope the BG gremlins are giving you all a bit of peace.

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.

Diabetes Week 2013 - A question of research

It was great to be invited to submit a guest post for Diabetes UK's blog to mark Diabetes Week (9-15 June) this year. I'm a little late with it, so it may not make it onto their site this week, but here it is anyway.

"What aspect of your diabetes would you fund research into if you had the choice?"

Some of you may know I've been pottering off to London every so often recently as part of the Guideline Development Group that is updating the NICE Type 1 Diabetes Guidelines. I'm on the Group as one of two 'punters', part of the Patient and Public Involvement programme that seeks to include a grass-roots perspective from patients during the development of NICE guidelines. As a result I've had a bit of homework to do and have come into contact with a whole stack of research papers on all sorts of topics.

I have good reason to be thankful for NICE Guidelines. As a patient, well written guidelines give you a meaty, authoritative document to wave in front of your clinic or GP that says, "Look, this is what the NHS says is the very best way to treat my condition, and that's what I want". NICE prides itself on being 'evidence based' and looks into all sorts of different approaches/treatment options to try to evaluate the very best options in terms of efficacy, balanced with cost-effectiveness. Thankfully 'cost effective' is not a euphemism for cheap here. Even very expensive options, such as an insulin pump, can be recommended provided that the research demonstrates quantifiable benefits to the patient.

At the risk of offending researchers everywhere, to my simple mind the research papers I've been looking at seem to divide roughly into two camps. One is 'I wonder what...' and the other 'I reckon...'. The second camp also appears to include studies with a vested interest in demonstrating a particular outcome, sort of 'Can we show...'. It is a good job that published research is peer-reviewed and some considerable effort is taken to ensure that studies are designed fairly, but nevertheless there is a part of all of us, I think, that looks slightly sideways at research into how marvellous a new drug is that was paid for by the company that makes the product. NICE even have a special method for reviewing research papers to assess their reliability 'grade'.

So what of my own 'I wonder what...' question? To be honest, it's probably a bit more of an 'I reckon...', but only because of my own experience over the last few of years. I also suspect (given some of the online questionnaires I have been invited to complete recently) that there is already a growing body of work on the subject. Best of all, there is no Big Pharma organisation lurking in the shadows looking to make squillions from a new wonder drug. What would I like to see researched? It is simply this: "The use of internet forums, social media interaction and blogs (the Diabetes Online Community) for improved patient outcomes with T1 Diabetes".

Now I'm not for a minute suggesting that posting a couple of threads on a diabetes forum replaces the expertise of dedicated healthcare professionals or attending regular screening or clinic appointments, but diabetes is a frustratingly individual condition and can be quite isolating. Time and again I see new people join diabetes forums, or begin tweeting who have lived with type 1 for decades but rarely, if ever, met or compared notes with anyone else living with the condition. I'm a passionate believer in the power of peer support and have seen its transformative power at work in the lives of many individuals. Successful diabetes forums are huge resource of pooled experience, knowledge and can instantly put you in touch with approaches, techniques and suggestions from clinicians all over the world. Diabetes blog posts that mirror your own experience from another's perspective can give you a real sense of connectedness and help you realise that it is not just you. Conversely, another post might make you realise that anything is possible. Social media channels and interactions provide very genuine and in some cases almost instantaneous support and encouragement when diabetes is not 'playing nicely'.

There is a new breed of Healthcare Professional learning to embrace and value these resources, and it would be nice for them to have some good hard research numbers to back up their enthusiasm. Hopefully we can move away from the time when HCPs never looked at online diabetes resources and suggested that their patients never read them.

If you are living with type 1 diabetes you are not alone. There are 1,000s of others facing the same daily battles and together we can make each other's days just that little bit easier.

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.

Scapegoats, Lobbyists and the Perfect Storm

Apologies for the recent flurry of posts. It's been one of those weeks! Last night I watched the first of the BBC's 3-part documentary 'The Men Who Made Us Fat' (available for the next three weeks on BBC iPlayer).

I had been eagerly awaiting the programme since reading an article in the Guardian that someone tweeted a link to (thanks Louise!).

I was not disappointed.

It makes me wonder if this is the year that people will look back on in the future as a real turning point in the public's understanding of the obesity crisis. This programme, the article and several others in the media in recent weeks are finally focussing on factors other than saturated fat when talking about problems with the modern western diet.

The programme focusses on the decisions made in the US in the 1970s which profoundly affect the current mainstream thinking on dietary health and what we eat today. Decisions which in the end seem far more based on economics and agriculture than health. I can't pretend to be any kind of expert on these things, having only a passing interest, but it was amazing for me to listen to a programe that (for once) did not just bang on about fat in the diet when talking about the western world's weight problems. Unsurprisingly Ancel Keys influence on the subject was covered. He, famously, took against saturated fat. According to the programme, on a trip to the UK in the 1950s he began to believe that saturated fat was at the root of the major health issue of the time - heart disease (cue grainy black and white pictures of toothy children scoffing fish and chips). He then set about proving his theory.

I have heard the name Ancel Keys many times before. I have seen his work vilified and passionately defended on several diabetes forums. Sadly, in the end I don't think it matters what he actually said or wrote at all. His proposals seemed to be based on a mediterranean-style diet with plenty of fresh veg and olive oil and only moderate carb intake. What happened is that when it came to the question, "What is causing all this heart disease, fat or sugar?" the incredibly powerful industry lobbyists had their scapegoat. Saturated fat became the enemy. There was no 'saturated fat' lobby. No specific industry to protect or promote. The incredibly powerful Sugar Association in the US (powerful enough it seems, to prevent the World Health Organisation from setting a maximum limit on recommended sugar consumption), and the political might of the US agricultural industry swept everything before them. The portions got bigger... The stuff we ate got sweeter (sometimes with lovely shiny 'low fat' labels)... The snacks were more relentlessly available... and our self control was, frankly, not up to it.

I'm not (quite) cynical enough believe that the soft drinks/processed food industry chose the cheaper corn syrup/glucose-fructose syrup/HFCS as sweetener of choice knowing that it turned off leptin, the chemical in your brain that tells you when you've had enough to eat. I don't think the fast food giants and food manufacturers cared about anything other than increasing their market share and selling more and increasingly refined and processed products. Having said that, it was with horrifying inevitability that the spokesperson for the US soft drinks industry said that she did not believe her industry's products had anything to do with the crisis in the western world's waistlines (despite being the single largest source of calories in the US diet).

For the last 40 years we have been told that fat is the enemy, saturated fat in particular. Carbs are good. Fat is evil. Attention is now finally veering towards sugar. And if you consider the 'Tsunami' of glucose that hits the bloodstream when eating sugary foods to be a bad thing, then perhaps it is worth reflecting that many of the things I have been told are 'starchy' and 'slow release' have proved anything but under examination from my blood glucose meter (even with the benefit of modern 'fast acting' analogue insulins to tame them).

I'm not some kind of be-sandalled ultra low carb evangelist. To be honest I have profound reservations about the extremes of viewpoint in any kind of discussion. But in a world where people with type 2 diabetes (essentially an intolerance to carbohydrate) are continually told that they must base every single meal they eat on the very substance which most rapidly raises blood glucose and threatens to fry their eyes, feet and kidneys it was refreshing to watch a programme that raised serious questions about our addiction to carbs in general and sugar in particular. At the risk of sounding like my parents - once again it seems that 'moderation' is the blindingly obvious, crushingly simple answer.

The next edition of the programme considers ballooning portion sizes. I can't wait!

Are you 'Type 1 Aware'?

As part of Diabetes Week in the UK, D charity heavyweights Diabetes UK and JDRF have launched a brilliant video which asks the question 'Are you Type 1 Aware'? It focusses mainly on those who develop type 1 diabetes in childhood and clearly explains the very obvious symptoms which are all too easy to ignore and/or be dismissed by busy GPs as parent paranoia. Having been diagnosed in early adult hood I know myself that it was several months of feeling really rotten before I finally decided I should go and get myself checked out by a GP.

Alarmingly some of the parents in the video share how close to death their children were before they were finally properly diagnosed.

Please share this video with your family, friends, parents, teachers and anyone you know who works with children or young people. You could save a life.

Watch the video on You Tube: www.youtube.com/watch?v=tYlQTylh_0M

More information on the symptoms of type 1 diabetes: www.jdrf.org.uk/type1aware

Family support for T2s

Way back when this blog was just beginning Jane wrote about the lack of support offered to families and partners of adult diabetics. Quite rightly there seems to be support available for parents of children with diabetes, but for those diagnosed in adulthood there seems little in place in terms of help and education unless partners, spouses or carers are able to push their way into appointments with the patient.

It seems that bastion of high street chemistry Boots is trying to change that, at least for the families of people living with type 2 diabetes. Research undertaken by Boots and supported by, among others, Dr Katharine Barnard, Health Psychologist and Senior Research Fellow at the University of Southampton suggests that families could be pivotal in supporting and motivating someone with type 2 diabetes, who at the very least should have access to good information about how their diabetes is treated and what sort of checks they should be receiving.

With 80% of the NHS’s 9.8 billion annual UK diabetes bill being spent on treating complications*, mobilising the wealth of latent support represented by these willing family members could prove a powerful weapon in better management of Type 2 Diabetes and in improving lives. Eight in 10 (81%) family members say they’d use extra support if it were available which is why Boots UK has launched a new Diabetes Information Service that not only provides support for people living with the condition, but also valuable advice and guidance for their families to help them start having better conversations.

* largely preventable

I get a bit nervous when these kinds of organisations start wanting to dish out advice to people with type 2 diabetes. Partly because I see so many people on internet forums who have a terrible time coping with their type 2 based on some of the questionable advice they get from their healthcare professionals! There was also a fairly disastrous campaign by Lloyds recently which provoked quite a lot of disquiet among diabetics by failing (as is often the case) to properly differentiate between types of diabetes.

I really hope this initiative goes well. A family which understands the crucial role carbohydrates play in the management of type 2 diabetes is less likely to say, "Oh surely that won't matter?". A family that understands how difficult type 2 can be to control is less likely to think, "It's only diabetes, just take a tablet and carry on as before". A family which all eats the same diet together make it easier for the person with diabetes to stay on the wagon. A family that understands the potential consequences of poor control will be better at motivating their loved through the dark days.

I haven't had a chance to see the Diabetes Information Pack, and have only briefly looked at the the information on the Boots WebMD website. Thankfully I didn't see much evidence of the usual "people with type 2 diabetes must eat lots of starchy carbs" nonsense, but I can't guarantee it isn't there lurking in the shadows so be wary. Encouragingly they also suggested that self-testing is important in the management of everyone with diabetes (well they do sell the equipment after all). If only we could get GPs around the country to feel the same way.

If you have a family member with type 2 diabetes how able do you feel to offer support? Comments please!

Disclosure: I was sent 'press release' information about Boots new Diabetes Information Service, but was not paid to write this post (I wish!)

Making Connections - Diabetes Week guest post on DUK Blog

I was delighted to be asked to write a guest post for the Diabetes UK blog as part of Diabetes Week 2012. Diabetes UK’s theme this year is ‘Make a Connection’ – here are two takes on that:

1. Making connections is the worst thing about diabetes

Diabetes is, for want of a better word, *incredibly* annoying.

I can’t really comment on the vagaries of type 2 – though I have read enough comments from people trying to wrestle their type 2 control into submission to realise that it is at least as contrary and inconsistent as type 1. Let’s be honest, there are days when type 1 diabetes can seem to be deliberately out to get you. Some days it just seems to get it into its head to ‘go off on one’ and there is simply no reasoning with it. Confusion and contradiction abound.

It doesn’t help that on other days, weeks even, it can seem to be entirely reliable and meekly obedient. Behaving the way the doctors say it should. Ratios and factors all present and correct.

It doesn’t even help that of all the chronic conditions, diabetes is one of the most livable-with. If I was going to have to have a chronic condition, diabetes would be pretty high up the list of ones I’d choose.

I can remember comments I got from friends and colleagues in the years soon after diagnosis, “Oooh, I could NEVER inject myself! I don’t know how you can...” – as if that were the hard part! The injections, the testing, the clinic appointments… These are all minor inconveniences. Even carb counting is easy enough and becomes second nature after a short while.

The really tricky thing about living with diabetes is the number of variables involved in the day-to-day running of things – and all the inter-related connections between them. Whenever my levels go all over the place there always seem to be 101 possible causes, lots of head scratching and false-starts before things settle again. Only to go out of kilter a few weeks later.

The body is amazingly good at controlling blood glucose levels. Really, spectacularly good. Most ordinary people wandering about have NO idea of the complex goings-on inside them. The ebb and flow of hormones keeping blood glucose levels within a tiny range no matter what they eat or what they do. It’s only when you suddenly have to start playing at being your own pancreas that you realise how amazing the body is.

The difficulty for us, of course, is that the body is SO good, that it’s a pretty tough act to follow. If the body usually kept blood glucose levels somewhere between 2-20mmol/L we’d all be laughing . But there’s a lot to juggle when you are trying to ‘do it yourself’ and live up to the body’s high standards. The grams of carb eaten... The dose of insulin for those carbs... The likely speed of absorption of the carbs... Likewise the likely absorption profile of the insulin. Not to mention the background insulin required to cover output from the liver, or for that matter, the liver suddenly deciding that this hour, or day, or week needs far more (or less) glucose than normal. Activity? Illness? Stress? Ambient temperature? It’s a wonder we ever get a decent level.

It’s worth remembering that when you are having a bad week. Playing at being your own pancreas is a big ask. We won’t always have all the information. What worked brilliantly last month won’t necessarily work as well this week (because this week is, of course, slightly different in a million seemingly inconsequential ways).

There is never going to be a ‘right’, only ever a ‘right for now’. The best we can do is keep on testing, writing things down, looking for patterns and chasing the moving goalposts.

2. Making connections is the best thing about diabetes

Diabetes is, for want of a better word, *incredibly* annoying.

It can also feel like quite a lonely place to be. For perhaps 18 years I lived my diabetic life supported by friends and family, but without really knowing anyone else with diabetes. I’d met only a handful of people with type 1 in my life, and stumbled across a few more with type 2, but none of their experiences seemed to relate to a diabetes that was anything like mine.

After a while the suggestions and comments from my clinic team were all very well, but they didn’t seem to fit with what I was experiencing – or worse still, were things I’d already tried and knew didn’t work for me. I was having a few too many highs, a few too many lows (but then doesn’t everyone?). My HbA1c was OK-ish. I didn’t seem to be frying my eyes too rapidly. I supposed I convinced myself that this was as good as could be expected.

But then a few years back I had an unusually nasty hypo (long story, short trip to A&E). Suddenly my understanding changed. Good enough was no longer good enough. We began to write this blog as a family, to begin to think about diabetes in a slightly more ‘front of mind’ way.

I began testing far more frequently, writing everything down, looking for patterns. I began to look around for other people to compare notes with. Found and read some amazing blogs written by people with diabetes from all over the world. Joined forums where I could ask questions, read experiences, or just generally rant and moan about the silliness of it all.

There is nothing like making connections with other people who instantly ‘get it’.

There is no question you can ask that will be considered too silly or too obvious.

There is nothing like reading a post written by someone on the other side of the world who is able to express exactly how you feel about a shared experience.

There is nothing like sharing one of your experiences, only to give someone else a ‘lightbulb moment’ over something they have been struggling with for years.

There is nothing like sitting around a table at a social event and having everyone pull out a BG meter before eating.

Making connections gives you access to the latest thinking and approaches from clinics all around the country (or all over the world).

Making connections makes you feel less alone.

Making connections makes diabetes easier to live with.

There are hundreds of people all over the world (and just around the corner) who know what it’s like to face what you are facing every day. Who can encourage you and support you. Who can make your diabetes easier to manage.

Go and make some connections of your own.