Hi ho! Hi ho! It’s back to Medtronic I go

Medtronic MM780G and Simplera Sensors
(Apple watch not included)

Hello. It’s been a while!

The embryonic posts I had in my mind about living with the Tandem tSlim never seemed to manage to make it to the top of the ‘to do’ pile, and remain unwritten - which I'm sure was a relief all round. But there’s nothing quite like a deadline to spur a (largely ex-) graphic designer into action. And tomorrow I am awaiting the delivery of my new insulin pump, as the warranty on my Tandem tSlim has elapsed. So it felt like a long overdue blog post could no longer be avoided.

Interestingly the ‘new’ pump isn’t particularly new at all. It’s the pump I rejected in favour of the tSlim 4 years ago. This might surprise some people. So why am I not sticking with the tSlim? Or joining the ever-growing horde of podders? But no, for me it’s the venerable MM780G, but with the fancy new Simplera sensors.

So Long tSlim

Confusion about my choice of ‘new’ (old) pump might be even more confusing because I have repeatedly said that I’ve never had better results than with the tSlim. My overnight readings in particular have been spectacularly good, very stable, and never required the alarm/calibration acrobatics that plagued my last days with my MM640G. Automated night mode suited me brilliantly, and I just expect to wake between 5.5-6.5mmol/L every day.

Non-shabby 90 Day Results

Control IQ added approximately 10-15% to my average ‘time in range’ which I choose to set 3.9-9.0mmol/L. My previous general 70-80% has become more like 80-95% most days. This is pretty spectacular with something as fickle, contrary, and annoying as Type 1 Diabetes.

Dexcom G6 mostly tracks my BG levels brilliantly. While I was self-funding (for approx 3 out of my 4 tSlim years) I was able to stretch most sensors to run for 20 days with a viable and solid flow of data, that I was confident to use for most corrections, alerts, and bolus calculations.

So in many ways, I am really happy with the system, and have certainly seen significant improvements from running a hybrid closed loop system. I’d really not want to go back to a pump which isn’t integrated with a sensor and making adjustments.

If anyone is considering the tSlim, I’d say go for it. It’s a very smart-looking and smart-behaving insulin pump. And it might really suit you well.

So why the switch?

Good question! With diabetes gadgets and gizmos over the years I’ve found that the devil is very much in the teeny tiny details. And that even something that’s brilliant, and well regarded, can somehow just not ‘click’ with you and your particular diabetes’ foibles.

This seems to be doubly true with algorithms.

An algorithm is based on a way they expect a person’s diabetes to behave. And how much of an adjustment that person might need to steer things in the right direction in any given set of circumstances. Your own individual diabetes may, of course, have other ideas. But commercial systems being what they are, they don’t really want to offer you much in the way of adjustment or personalisation. It is what it is.

Pretty soon after starting in the tSlim (with only Basal IQ at that stage) I observed that their predictive low-glucose suspend acted much later, and switched off much earlier than the one I’d been using on the MM640G for several years. There were a gradually phased series of basal reductions before a full suspend (really my body needs a full shut-off from the start), and the insulin resumed very soon after an up-tick in sensor values was seen. This was good in the sense that I didn’t have any of those occasional teeth-grindingly frustrating high BG alerts following an over-long suspend. But it was a bit rubbish, on balance, because only the most gentle downward-drifts were caught in time for me. Even when I activated ‘Exercise Mode’ for such strenuous exertion as wandering round to the shops.

In the old days I’d have set a Temporary Basal Rate to start things off early. But Hybrid Closed Loops don’t let your set TBRs, because... well... they are supposed to be doing all that stuff for you.

I experimented with setting essentially a fake TBR basal profile of 0.1u/hr for the 24 hours and activating that at the start of dog walks and such... But then, inevitably, I’d forget to switch back when I got home, because TBRs had always just cancelled themselves after a set time. Following an update of the Control IQ software I was able to completely suspend the pump for a defined number of minutes after which it alerts to restart. This was OK, but for reasons I cannot really understand this also silences any alarms of impending hypo/dropping BGs the pump might helpfully provide if basal-suspend isn’t enough on its own, and levels are getting a bit close to the edge.

Dex lag and alarm fatigue

Initially I was blown away by how well the Dexcom G6 tracked my BG levels. Whenever I did a ‘how are things going’ cross-check the results between fingerstick (Contour XT) and Dexcom G6 were only ever a few tenths of a mmol/L out. This gave me huge confidence. But at some stage in the first year I observed that the problems I was having with the late action of tSlim’s predictive low-glucose suspend were being compounded by a distinct lag between capillary glucose and sensor glucose. This isn’t news to me, and I understand exactly why this lag exists, but Dexcom seemed more reluctant to respond to changing values than any other sensor I had used. Almost as if part of it’s ability to match capillary glucose so well when things were stable was bound up in taking extra values and only updating sensor glucose every 5 minutes - perhaps it just waits until it's sure? For me Dexcom G6 is almost always a whole 10 minutes behind moving glucose. And when a ‘this hasn’t worked’ Control IQ alert is happening only 15 minutes before levels dip below 4.0 (and that ’15 minutes’ is what was happening 10 minutes ago) well... some of my increased number of low-level hypos were easily explained. From 1% below 4.0mmol/L to frequently more like 3 - 3.5% - still on target, but I've worked hard to restore flagging hypo awareness and this really can't help.

When is a 4.2 not a 4.2? When it's 10 minutes later

Added to that there were challenges at the other end too. I’d get told that the basal suspend wasn’t enough and to take preventative action after I was already low, and then 10-15 minutes later be told that levels hadn’t recovered, which prompted me to re-treat. Only to then discover that actually that hypo-treatment had been enough, and that the double-treatment was now gleefully pushing me into the teens. Maybe 5-minute updates 10 minutes behind reality are OK for some people - but when I really need to know how things are moving at the sharp end of hypo-dodging, they were causing me frustration and treatment errors.

The upshot was that pretty early-on I had to take the up reins of hypo-dodging myself again. I set my ‘low alert’ at 5.2mmol/L because (10 minutes behind), that gave me enough time to take action if necessary - with a sensor reading 5.2 and dropping I could easily be low 4s when the alarm sounded and need some rapid glucose to steer away from the 3s. I had the alarm repeat at 30 minute intervals, so that I’d get a reminder to recheck to see any action I’d taken had worked.

But of course it might be that I was just pootling along in the 5s. Getting little warbly nags every 30 minutes. Which was quite annoying.

Even more annoying

But nothing like as annoying as the tSlim’s attempts to actively sabotage my hypo-dodging efforts. Alongside a rapid resumption of the basal profile, the tSlim has, on multiple occasions, delivered a mini-bolus just as my levels were returning to safety after a hypo treatment(!). For meal mis-calculations, or dose-timing errors it never seemed quite so enthusiastic, or effective, at turning around a rising BG, but getting another low alert in the high-4s on a dog walk or while gardening, having successfully treated the last one - and then finding out that it was the tSlim that had caused it with a completely unnecessary mini-bolus, was the inspiration behind some particularly florid and lively outpourings of language over the past 4 years. I asked my consultant whether they knew of workaround/setting to prevent this. Alas none was available. So I had to hugely down-grade my correction factor during the likely hours of evening dog walk, which of course means Control IQ can’t work ‘properly’ during those times when dog walks have happened at other times. And again, setting or not setting ‘Exercise’ mode doesn’t seem to be the fix.

The hollow squares are tSlim autoboluses

 

Better results, but more effort

So yes, I have had better results, and the tSlim has handled many things really well for me. But the alarm fatigue has been pretty tough going. I’ve had a much higher numbers of non-severe hypos than I was used to on the MM640G, and I really miss the discovery that my pump has fixed something for me after the fact, quietly, in the background, with no alarms or notifications required.

Hopes for the MM780G

It was the memory of weeks and weeks with no sub-4 numbers that got me wondering about returning to Medtronic, and giving their hybrid closed loop a try. The pump is the same format, and the chassis is still as clunky and grim as ever (though I’ll be glad to have a screen that’s visible in sunlight again - the tSlim is awful in daylight), but they have updated the software, so it's not exactly like going back in time 4 years.

Medtronic G3 sensors never worked well for me and needed frequent calibration, including overnight. I gather the G4s were significantly better, and I have high hopes for the new Simplera sensors that I’ll be starting on.

I know quite a few people on the MM780G, and almost without exception they seem to get on very well with it. I know there will be frustrations and annoyances - there always are. But I’m hopeful I may be able to experience some of the “spending less lime thinking about diabetes” that others mention. On the tSlim I think I’ve had to think more - constantly checking up on what it’s doing, and fixing some very silly decisions it was making from time to time.

I’ll let you know how I get on.

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.

Hybrid Closed Loop Insulin Pumps (Artificial Pancreas) - The Basics

Hello!

It's been a while eh?!

Sorry about that. Truth be told, it's all got rather busy for me, and actually since my last post in my early months on the Tandem tSlim x2, my diabetes has mercifully faded into the background a little, and while still very annoying, hasn't really given me all that much to write about.

But this week has seen the release of something really quite exciting, that I hadn't even realised was happening. It seems those smart cookies at NICE have been munching the clinical trial data and developing a Technology Appraisal for Hybrid Closed Loop insulin pumps (which is the latest bit of tech to be enthusiastically called 'the artificial pancreas', none of which so far are much like having an actual artificial pancreas, but I digress...).

NICE TA10845 is now out for consultation so that stakeholders can review it and make suggestions or ask some pointy questions before publication. It's the same process that the 2015 NICE Guidelines for Adults with T1 which I worked on went through. But what's potentially exciting about a Technology Appraisal, is that while NICE Guidelines are just that - an indication of what the evidence shows to be the better approaches - TAs potentially have more clout, and if the clinician decides that the TA recommends a treatment option for a particular person the funding has to be provided. If the draft is published in its current form it has the potential to open the door to the previously hen's teeth elusive pump-and-CGM combination to around 25% of people living with type 1 diabetes in the UK.

Of course some of these people may have little knowledge of this combination of technologies which has been around for a while, but access to which (certainly with funded CGM) has been notoriously difficult to obtain. And there's quite a bit to get your head around, because it's a combination of several different bits of diabetes kit all working together, but not completely automatically. For all the claims of 'artificial pancreas', there are still quite a few things that you need to do to as the wearer.

From my own experience, having some of my diabetes kit actively helping me out, and looking out for me has been a huge help and a massive leap forward. A hybrid closed loop can't do everything, but it really helps me smooth off the edges of my blood glucose guesswork. It gives me much more confidence, and my results have never been better. I'd find it very difficult to go back, even if (as seems likely from the draft criteria) I still need to self-fund my CGM sensors.

A year or two ago Diabetes UK were putting together an introduction to Hybrid Closed Loops, for which I recorded a bit of video. However in the end it was far too waffly for Diabetes UK to use, so they interviewed me for a few comments instead. But this recent announcement has seemed like the perfect opportunity to inflict it on the world. Sorry about that.

So here is a basic overview of what a Hybrid Closed Loop insulin pump is, how it works, and what it's actually like to live with.

Watch this a little larger on my YouTube channel.

Hype or Hope? Dexcom, Tandem tSlim review and 2020 round-up

Wait... hang on... December 31st? That can't be right! Have we actually had a year this year? And how come any of the things that happened this year seem to have happened at least 18 months ago? No time has passed. But it has passed at a snail's pace. And at the same time we've all become accustomed to living completely different lives.

Doing a sort of round-up post for the year that never happened doesn't seem worthwhile. There are only so many times I can talk about avoiding a Zoom-based diabetes thing before I'm going to run out of waffle. Yes even me.

tldr; 2020 was a bit pants. But I really like the tSlim and Dex.

Tandem tSlim with Dexcom G6

Out with the old
I've been meaning to write a post or three about my experiences of the Dexcom G6 and my switch to the Tandem tSlim:x2 (and subsequent upgrade from Basal IQ to Control IQ) since the Summer, but for all sorts of reasons that series of posts never arrived. I have lots of pics of pump and graph cluttering up my phone that were apparently going to eloquently show something or other, but it's all so long ago now that I can't really remember what it was I was going to say.

I am self-funding Dexcom G6 sensors, and it was the first time I had used Dexcom. Such is the relentlessness of the positivity around Dex, that I think secretly I might have been hoping that I wouldn't find it all that special. 

I sprung for the 'starter pack' which gives an official 30-day's worth of coverage before I committed to going for the tSlim, so that if my body chemistry didn't get on with the Dex I could opt for Medtronic's MM670G (or similar) with self-funded Guardian G3 sensors. I had always got on well with Enlites and to some extent G3s too, and I was pretty sure that I would have got on well with the MM670G if that was what I'd gone for.

Inserting the Dexcom sensors was really straightforward, and initially I ran the sensors with my iPhone (not yet having taken the plunge on the pump). They restarted easily, and I didn't even have to faff about with unpeeling tapes and removing the transmitter thanks to these instructions. What really struck me though, was how well the factory calibrated G6 tracked fingerstick results from my Contour Next Link 2.4 meter (still my go-to BG meter). The first few days were uncanny. Spooky even. It didn't appear to be hype at all - generally Dexcom was reading only a few decimal points away from any fingerstick I took.

Even a Dexcom G6 lags a little now and then

Reassuringly though, I did see a characteristic post-hypo-sensor-lag on about the 3rd day, where the Dex stubbornly continued bleating about low BG for 5-10 minutes after I was back above 4. So it was a regular CGM and not witchcraft after all. It was just that it was a really good CGM for me.

Joking aside, those early excellent matched pairs (against fingerstick checks) really helped me trust it as a new bit of kit though. 

And even better, while the factory calibration is excellent for me, and I've all but given up cross-checking with fingersticks, if I *need* to recalibrate the Dexcom G6 because it has drifted a little... I can! 

After a few weeks with the Dexcom I was confident to put in my request to switch to the Tandem tSlim when the warranty ran out on Threepio.

Switching to the Tandem tSlim:x2

I affectionately called my first insulin pump robot counterpart 'Artoo' (R2P2 - replacement to my pancreas #2), and kept with the Star Wars theme with my MM640G as 'Threepio'.  This bit of kit promised to be wiser and much more autonymous though, so I've taken to calling it HAL (hybrid automated loop), though of course it would be much funnier if a certain tangerine diabetic had made that joke, [affects creepily calm synthetic robot voice] "What are you doing Dave? I'm afraid I can't let you eat that biscuit..." etc.

Staying in its box until I was trained up.

As all this was happening while the healthcare system was in some degree of chaos, and all those buzzwords like 'social distancing' were in full flow I wasn't sure how any kind of switchover was going to be able to happen - but in the end, in classic 2020 style I did my pump training via a video call having had the box of goodies delivered direct to my house.

I had a few weeks with Basal IQ before switching to the smarter Control IQ. Both worked well for me, and each have their own idiosyncracies. I have tried to do as little fiddling as possible, taking an initial 7 days to see how each got on when left to their own devices to try to learn what they are good at, and where they struggle. Also learning how to give them the right information to get the best results.

For those outside the Tandem bubble (seriously 2020? another word you've mangled?!), Basal IQ is Tandem's 'predictive low glucose suspend' algorithm, which stops basal insulin in order to try to reduce risk of hypos. Basal IQ is a little more responsive I feel than Smartguard on my MM640G. In that it can turn on and off more quickly, and doesn't have a minumim duration or enforced gap after it has completed. There was a major irritation for me when running the Basal IQ algorithm in that the tSlim moaned at you if you set a 0% TBR, though ot was more than happy to set one itself. Indeed, the tSlim got very grumpy if a TBR was set that was less than 50% of your lowest basal rate. A degree of warbling which was as unwanted as it was unnecessary.

This irritation was short lived though, as I soon upgraded to Control IQ. One of the nice things about the tSlim is that you can plug it into a computer and upgrade the software on the pump. Which means that if they release fancier, smarter, or even just mildly less irritating versions of the pump software, then you don't have to wait until 4 years have passed to take advantage. All I need now is to find the email address of the person to send my Helpful Suggestions to, for inclusion in the next release 😉

Conclusions

I guess I've been on the tSlim a little short of 6 months now, and I can honestly say that I am really glad I made the switch. I loved the MM640G, but the clunkiness of the Medtronic chassis, and some of the million-presses-UX-interface-tedium was wearing me down. Plus the newer G3 sensors were a bit more flaky and prone to overnight calibration requests for me. There are things about the tSlim I would hope would improve - not least the reservoir filling, which is every bit as fiddly as people say. Their reservoirs really need re-engineering so that the 'white dot' behaves more reliably (tSlim users will know what I mean). 

And what of results? Well I've not really that the nerd-energy for much actual data comparison, but going on gut feeling I would estimate that the tSlim has bumped my TIR (time spent between 4.0 and 9mmol/L) by somewhere between 5% and 15%. What used to be a really good week of results is rapidly becoming pretty normal. Control IQ still needs watching as it often responds a little later than I need, and it's not perhaps as 'hands off' as I was hoping it might be, but Control IQ really nails the little adjustments for me. It struggles with circumstances which are a bit wobblier, but it seems very good at optimising gentle drifts. Overnight with Sleep Mode has been spectacularly good. Almost no alarms, and almost always waking in the 5s to 7s.

Gotta be happy with 28/30 days above 80% TIR

It will be really interesting to see if this has had any kind of effect on my HbA1c, but to be honest, I increasingly find A1c a poor proxy for how I feel my diabetes management is going from month to month. It may still be seen as an important stat as far as research goes, but I'd far rather focus on the ebb, flow, and varying proportions of BG values that lie behind it. But that's another post I'll probably never get around to writing...

Here's hoping for a peaceful, healthy, happy and significantly more stable 2021 for us all.

Hot and Cold

Some musings on the joys, oddities, encouragement and occasional knock-backs of invites to diabetes events...

Lanyards, obviously. 

Apologies for the radio silence of late. I meant to write this post months ago, but somehow never quite managed to grab the time for it. Initially I had planned several posts each detailing different events and experiences, all fascinating and full of wit and laugh out loud anecdote, but eventually they all began to coalesce around a single theme of confused grumpiness, so that’s what you are getting instead.

I was lucky enough to be invited to a number of diabetes events in 2019. It’s always an honour and a privilege to receive an invitation, and in no way do I want this post to read as my being in any way ungrateful, or my taking those invites for granted. Because I absolutely do not. I am fully aware of my rare position of being offered an invite - a seat at the table - and it is not something I take lightly. At all.

Sometimes I was invited by device manufacturers, other times by pharmaceutical companies, or diabetes charities, or healthcare professionals and researchers. Sometimes I was invited to speak, other times I was invited to listen, or perhaps to participate in discussion and conversation on some diabetes-related topic or other. My travel (and accommodation if needed) was paid for by the inviting organisation, and the events are always fascinating with much for me to learn and take away. Sometimes they were in the UK, but my travel and attendance at EASD in Barcelona formed part of my year - a first for me, and every bit as enormous, interesting and ever-so-slightly overwhelming as I had imagined it might be. Except perhaps more so. (EASD is the European mega-conference for those working in the field of diabetes, it is mindbogglingly big).

Hot
Almost without exception my attendance at events is surrounded by enthusiastic comments about the importance of hearing the ‘authentic voice’, the lived experience; the punter’s-eye viewpoint. Having people with diabetes at these events seems broadly welcomed and encouraged by most healthcare professionals. Many say how important it is. How vital to hear from and connect to people who live with Diabetes day to day, to hear their experiences, and to listen to their stories. When I’ve been asked to speak, the feedback forms have been overwhelmingly positive, almost to the point of embarrassment. Clinicians anonymously feeding back that they are intending to change their clinical practice because of the experiences and thoughts they have heard from people living with diabetes. “Best talk of the day”, “So important”, “Much to take away from this”... the welcome could not be warmer.

When I was appointed to be one of the ‘lay’ members of the NICE Guideline Development Group for T1 in Adults, we had training and support to help us unpick the clinical data that we would be asked to review. It was made very clear from the outset that our voices and contributions, though entirely without medical qualification, were felt to be just as important as anyone else’s on the panel. We were actively encouraged to speak up, and to ask questions - even if we suspected everyone else probably knew the answer... partly because sometimes they didn’t, and would be very glad we had asked for an acronym to be spelled out or some terminology or other explained. We were told how important our participation was felt to be. And to their huge credit, the clinicians and researchers around the table never once gave me the impression that they wished I would shut up, no matter how much they may have been thinking it privately.

Increasingly it seems research projects and clinical trials are being put together with PPI inbuilt from the ground up . (PPI being ‘patient and public involvement’ - are we allowed to say ‘patient’ this week?). It appears that in some cases, perhaps even many or most cases, funding for research and interventions depends upon clinicians and researchers ensuring that the ‘patient and public’ voice is represented, and that there are non-medical people involved in the review, and design of studies and materials.

And I think all of this is a good thing. Nothing about us without us.

But...

From the very first ‘big thing’ I went to (Diabetes UK Professional Conference if I remember rightly), it was clear from the outset that we PWD didn’t belong.

Cold
“It’s the regulations I’m afraid...” “Nothing we can do...”

My first visit to the annual DUK professional conference involved me being ‘co-opted’ as a blogger onto the Press Team. As a person with diabetes I was not allowed to be there. I was not welcome.

Mostly this is because of fearsome pharma regulations, which forbid the advertising of almost all pharmaceuticals directly to the general public (hay fever and headache tablets etc aside). Significant fines and penalties hang like a Sword of Damocles above the quivering pharma multinationals who cower beneath it. If you happen to live with T1 diabetes and also be a journalist... or work for a pharmaceutical company... or a diabetes charity... or a device manufacturer... you appear to be immune to the devastating potential impact of walking past a poster for a new T2 medication. But as a mere PWD mortal? Perish the thought.

And this strikes me as a little odd. Because. The internet.

In a world in which I can look up published research papers on Pubmed, or any number of research outlets,  I wonder how damaging it really is for me to see those research results presented and explained, along with lots of context and clarification at a conference. I wonder how much difference there is between reading a article by a journalist about a new medication, thinking it sounds promising, and then asking your clinic about it, versus seeing a poster in an exhibition hall as you walk through to get a coffee. At EASD, while I could attend sessions, there were large ‘no entry’ posters at the entrance to the exhibition hall forbidding my entry.

And these regulations are clearly terrifying. At one event I attended last year as a guest speaker, to give my experience and thoughts on diabetes appointments (a blog I really must get around to writing) I was not even allowed to go and choose my own lunch. Some exhibitors, getting wind of my attendance had made the organisers agree *in writing* that I would be chaperoned from the moment I arrived in my car. I had to wait in the reception area, and be taken to a special side room, accompanied at all times. Then someone went to choose a few things for my lunch (because the exhibitors were in the same space as the food). And when I had finished my talk, I was accompanied straight back to my car and I drove away. No time to chat to clinicians. No way to hear anything else. This sounds comedically extreme (and in fact it was) but I’ve heard from others who have been asked to speak and who have been similarly chaperoned, lest their eyes should wander or they stumble upon a discarded leaflet for PintoDactoTrophomax10 and expire from the shock.

I am sure the regulations were put in place for very good reasons (witness the bother we are currently in, with antibiotics after overuse driven in part by people going to their GP and demanding them for a viral infection). But really? I genuinely don’t believe they are fit for purpose any more.

How often do we see a news story about some new drug or therapy that has been deemed insufficiently effective for widespread use (or too expensive... or both). And parents and supporters are campaigning for access for little Johnny, or attempting to fly overseas to acquire the treatment there.

The law is an ass, so they say. And this pharma law seems doubly so. It is a hindrance. And it’s not doing the job it is meant to do.

But the thing that I find most troubling about this particular regulation in terms of diabetes, and my own experience of self management is the subtext of it.

Essentially, in a sense you could read it as saying, “You are unqualified. You are not trusted. You cannot make this decision. You are incapable of understanding the complexities of the issues involved. Keep quiet and do as you are told.” I know it isn’t actually saying that. But I think also... in some ways, it is.

To their credit, Diabetes UK have tried to improve access for PWD to new research and created the ‘Insider Day’ - a one-day version of their Professional Conference specifically aimed at people with diabetes, where some of the content from the main conference can be shared in a way that satisfies the rules. But does this (as great as it is) create a two tier ‘dumbing down’ structure? A watering down to make things more palatable and easier to digest? Conference Lite.

Spoiling it
The other slightly odd thing about getting some of these invites, particularly to the larger events, and where I have been asked to speak, is that some HCPs really wish we PWD weren’t there and would go away and leave them alone. Anonymous feedback forms (you do realise we get those to read afterwards, right?) which are completed with the apparent intention of reflecting this opinion back to organising committees... are also read by the people that give the talks. Some HCPs have suggested in the clearest possible terms that they thought my contribution added absolutely no value at all to the event, and they would much prefer it if I had not been invited to witter on inanely at them. I am not quoting, you understand... but the sentiment was pretty much there.

I completely understand the opinion of some HCPs that they would prefer their ‘own space’, and sometimes I see exactly the same wish expressed by people with diabetes about meetings or online spaces. Some people’s preference is to have a place where they can be, and share, and exchange thoughts with just their peers present. With no need to accommodate the sensibilities of others. I can see that sometimes you just want to have natural (unguarded?) interactions with your own. To kick back and not have to worry about minding your Ps and Qs lest someone gets the hump. Even the most supportive and passionate advocates of PWD involvement have been known to express this desire.

So I do understand it. But also I genuinely value an open interchange between n=1 lived experience and profound clinical and specialist expertise. I think that while there is a desire for PWD involvement in the conversation, being chaperoned, excluded, not trusted, and made to feel uncomfortable isn’t very helpful for anyone. I think we have much to learn from each other. I’ve seen some conference presentations that have made my head spin with the complexity of it. I’ve not understood all of it by any means, but when something is well presented, even if way above my understanding, I absorb the main thrust of the content, and find I remember it and can apply some of the complex physiology (or whatever) to my lived experience.

I also think being in a mixed environment helps to create and maintain respect (though sometimes this seems spectacularly absent in online spaces). I think sharing spaces can create empathy and understanding. It’s not like we are on ‘different sides’ right? Clinicians, researchers and industry want us to have better outcomes, and that’s exactly what we want too.

I do believe it is possible for both clinicians and PWD to express their authentic, honest experiences, and also maintain respect, and behave with kindness and courtesy.

I look forward to a time when the regulations change, and involvement (or exclusion) is done more openly and intentionally, not under the veil of what seems to me to be a rather outdated rule book.

I’d love to hear your thoughts.