World Diabetes Day 2023 - the road travelled

Hey there! How have you been. It's been a while eh? Sorry about that! Life, the universe, and everything. You know how it goes.

So this isn't the blog post I've been meaning to write about TBR hacks for the tSlim running Control IQ. It's not even the one about seeing if I can get funding for sensors, which I seem to be being promised, but which hasn't quite happened yet.

If those are of any interest, do let me know and I will try to get around to them. Honest!

No. Instead this is a little unexpected ponder I had earlier, when realising that it was WDD once again, as I saw lots of other more capable awareness-raising diabetes types sharing stuff on their social feeds. It came unbidden. And rather surprised me - so here it is...

"Wow. Diabetes has really changed since we started the blog!"

There. That's it. Groundbreakingly insightful as always.

But much as diabetes is still Very Annoying (TM), a bit of a drag, occasionally utterly terrifying, frequently exhausting, but on the whole relatively manageable most of the time... there have been some pretty big changes in the decade or more that I've been rambling semi-coherently on here.

Back then, Twitter (for diabetes types) was a sort of a cosy coffee shop. A place to connect with a few like-minded folk who were also, coincidentally pancreatically challenged (thanks ShootUp), and chat about something and nothing. Now it's not even Twitter any more!

Once 'low carb' to help managing T2 was viewed as some sort of crazy, lunatic idea and positively discouraged by pretty much all healthcare professionals. Now it's seen as a fairly mainstream management approach that works really well for some people, and is often mentioned by practice nurses from the very beginning. This was once unthinkable on the forums I was frequenting when I first started comparing notes with other people with diabetes. There are now whole NHS GP practices championing the approach, and even established NHS programmes to help people who want to give it a go.

When we started writing this blog, as far as the scientific and medical world was concerned T2 diabetes was an inevitably progressive condition (hardly a phrase that encourages self management!). You got it, and then it gradually got worse and worse, and needed more and more meds, until you expired either from it or from something related to it. Now thanks to the DIRECT trial, there is high quality evidence that many with T2 can get their diabetes in remission (keeping HbA1c below 48mmol/mol with no medication) though significant weight loss. And many folks who choose a low carb approach can achieve the same remission criteria too. And this that remission can be maintained for many years.

There are a bunch of fancy new insulins and meds available now too. Including some that could potentially prove complete transformative for people who struggle with overweight and obesity.

Way back in 2010, CGM was almost unheard of outside of the US. I was even invited to a thing where the company developing a product wanted to know whether or not many people in the UK had even heard of the idea. At the time the chance of getting a CGM funded in the UK was vanishingly small. But a torrent of advocacy effort, an expectation defying Prof, and a flurry of new technologies and options later, and now over 90% of people with T1 in the UK have access to funded full time CGM.

They are now embarking on the same transformation for Hybrid Closed Loops (where an insulin pump and CGM talk to each other and are able to make some gentle adjustments to help us out).

The pace of change is extraordinary. And it doesn't seem to be slowing down.

Plus in the background really quite staggering progress is being made with stem cell research and other avenues, edging ever closer to a possible cure.

I'm really hoping that some progress can be made around reducing diabetes stigma. And especially in increasing access to appropriate monitoring technology for those people with T2 who would value it and benefit from it. Possibly even a little sub-division of the T2 umbrella, so that more appropriate options can be offered to the different sub-types, rather than a blanket 'No' to so many people.

So cheers to old Fred Banting. And Charlie Best, and all the others. There really has never been a better time to have diabetes.

And maybe, just maybe, someday soon, nobody will.

Unusual suspects : age at diagnosis

A short while ago I was musing about one of the questions which form part of the scope of my little side project. It got me thinking, and in order to have a slim chance of having something to say when the subject eventually comes up for discussion I began to wonder just how old people generally are when they are diagnosed with various types of diabetes.

In the old days, of course, things were much more straightforward - even the conditions themselves were referred in terms of 'juvenile' and 'maturity' onset. But I'm forever coming across folks in forums who were diagnosed with 'type 1' (which is typically thought of as a condition that develops in childhood) well into their autumn years.

There was an obvious answer to satisfy my curiosity - just ask you lot. So I decided to conduct a quick straw poll and asked around the good people of the DOC for their age at diagnosis. Now of course this was not carried out with much, if any scientific rigour - but I find the results fascinating nonetheless.

First off I was absolutely humbled and amazed as ever by people's generosity of spirit in the DOC. Within hours of tweeting, "I'm just curious..." I'd been inundated by responses from people who had never heard of me before and my little tweet was bouncing all over the twitosphere with RT after RT. Facebookers and forum peeps waded in and before you could say, "well I wasn't expecting that" I had over 220 responses. Two hundred. And twenty. Many of the 'proper' research projects I see and read have sample populations in the 10s. People even continued to respond for a short while after I'd gathered the results in from the various places.

While I recognise that I was asking a particularly skewed demographic, I found it interesting that after logging 70 or 80 anonymised responses into a spreadsheet the proportions of people in the different age groups remained almost entirely unchanged right up until that 221st person chipped in. So while I completely accept the limitations of the survey I do wonder whether it isn't that far off the real picture.

So what did I discover?
The first and perhaps most surprising thing I discovered was that members of the DOC are much more likely to be type 1. I'm not absolutely sure why this is - perhaps because the management of type 2 is often downplayed by healthcare professionals and people are (mistakenly) led to believe that type 2 is somehow 'less serious'. People with type 1 it seems are more likely to feel like they are struggling and to seek help and support online. So while in the UK population type 1's make up only 10% of diabetics, in my survey they represent 72% of responses!

Oldest and youngest
Of the type 1's the age at diagnosis ranged from just a few months old right up to 66. Type 2's were similarly stereotype-defying ranging from 17 up to 66 again. The average age for diagnosis with type 1 was 18, while the average age for type 2 diagnosis was 45. I didn't specifically ask the question, but at least a dozen people volunteered the information that they had first been diagnosed as type 2 and later reclassified as type 1 or LADA. The average age for the first diagnosis in this group was 35. It would seem that if you are diagnosed with diabetes in your 30s then you stand the highest chance of your Dr putting a tick in the wrong box, and if the treatment you are receiving isn't working despite your best efforts it might be worth asking for some more tests!

Just the facts ma'am
For those who fancy poring over the numbers/proportions for themselves here are the basic analysis tables that Excel squirted out:

	Type 1	Type 2	Total
Number	158	63	221
Average Dx Age	18	45
Dx uncertainty/change	12
Avg Age at initial Dx if changed	35
By age group	Type 1	Type 2	T1 %	T2 %
<= 17	90	0	57%	0%
18-34	47	7	30%	15%
35-44	14	24	9%	38%
45-64	5	29	3%	38%
65+	2	3	1%	5%

So while, as you might expect, over 50% of T1s are diagnosed by the age of 18, almost half of them aren't. Coupled with which the number of people diagnosed with type 2 in their 20s - early 30s is a pretty meagre 15%, with the several of those being later reclassified). One T1 respondent mentioned that at 18 they were told they were 'too old' to be type 1. For another this happened in their mid-20s.

It would seem that getting diagnosed at an unusual age is, well... er... not that unusual.

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!)

Owning your targets

I replied to a forum thread today, and only as I was posting did it strike me that I've completely changed the way I view my blood glucose target range in the last year or so. A mother with a teenage type 1 diabetic daughter was expressing concern about the extra fingerstick blood glucose tests, basal testing etc that would be part and parcel of her move to pump therapy. She then said she had to text to remind her daughter to do a test, and text back the results. It made me wonder how that felt for a young person. Whether they would feel that the tests were for them at all.

And then I realised that was exactly how I had felt about these things too.

The recommended levels for adults with type 1 diabetes in the UK are 4-7 mmol/L (72-126mg/dl) before meals and less than 9mmol/L (162mg/dl) by two hours after meals. This is, frankly, a tiny target to try to hit. To be honest the permitted percentage of inaccuracy on a BG meter is 10%. So the meter itself is only accurate to one sixth of the target range some of the time. I've had 20-odd years of consultants telling me that I was 'doing fine', but 'should try to have not quite so many highs and avoid those lows'. I've always just smiled through gritted teeth at such comments. "There speaks a person" I would say to myself, "who has never tried to guestimate the carb load and absorption rate of a meal, and tried to match it precisely with the activity profile of an insulin injection, taking into account any abnormal activity level during the day." If they wanted me to hit their stupid target, they should have made the darned thing a bit bigger.

In a small, but incredibly crucial way though, my mindset has changed. The shift was so slight I only noticed it when trying to look at the same issue from someone else's point of view. The range, is still as tiny, but it is now my range. Whereas before I would grumpily think, "well that's just impossible... I'll aim for 4-12, but for you to ask me to do any more than that is just unreasonable" I now see 4-9 as my target for me.

I've never tested so much in all my 20 years with diabetes as I have over the last 14 months. I've never voluntarily gone without so many meals to check on my basal insulin's activity. In all likelihood I would not be doing so without meeting other diabetics online. Diabetics who hit their own tiny target ranges. Not every day, but often enough to prove that it is at least possible.

Once you understand that the target (whatever you decide that it is) is your own, all the effort required to aim for it, and let's not pretend that is isn't a LOT of effort, somehow becomes much easier.



Edit: Just re-visiting this post after several years and I have realised that in the time in between I have altered and changed my targets on more than one occasion. And this is fine too. Currently I'm finding 4-10 gives me less opportunity to berate myself over high readings with an additional soft lower limit of 5 which I will treat as if low to give myself a little more wiggle room. What's important is that I feel these are what I have decided to do for me. Not some impossible nonsense handed down from on high.

The amazing amazing DOC

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Diabetes bashing on Channel 4 News

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Now that really would save the NHS some cash.

Curious? You can watch the report here.