Posted by on Tuesday, 11 February 2020

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.

Posted by on Sunday, 5 January 2020

Plus ça change

DUK Towers E1, tomorrow.
I shouldn't be writing this.

It's too late. I've been to the pub and had a couple of beers (as my Libre trace would gleefully tell you). I've just poured a rather tasty Japanese whisky.

By rights there are at least 3 blog posts that have been patiently waiting in line for me to finally get around to writing and posting them.

But tomorrow.

Tomorrow.

Tomorrow is the start of a new chapter.

Jane always liked new chapters.

Tomorrow I will be up early to breakfast, to walk the dog, and then potter to the train station to travel to a meeting at Diabetes UK's HQ in East London where I will begin a new part time digital peer support role with the UK's second favourite national diabetes charity.

I've been a volunteer moderator on the Diabetes UK sponsored forum for almost a decade, but this will be a change for me, and the first time I've been employed by anyone except me for more than 15 years. I am really looking forward to the challenge and to growing, encouraging and nurturing the peer-support interactions which I know from my own experience are SO vital, in a thriving community, over the coming years.

2020 has always felt like quite a momentous year. Perhaps because of the position in life in which I find myself. Perhaps simply because of the neatness of the numbers.

It will be very interesting to see where we are at the end of it.

Posted by on Wednesday, 31 July 2019

Diabetes days off

As we transition into holiday season, with the traditional exponential increase in holiday accommodation costs everywhere, many thoughts turn to sandy beaches and the chance to take a break from the incessant whirlwind of life for some well-earned rest and relaxation.

Except for diabetes, of course... that never gives you a day off.

Well almost never.

I was thinking about this the other day, and even tweeted my exasperation and the more-than-usually-fickleness of my diabetes of late.

I had an annual review recently, and since my pump is soon out of warranty I am casting a casual eye over the current crop. I've been very lucky to be able to run sensors with my MM640G more regularly recently and there is no doubt that the semi-automation of SmartGuard helps improve my 'time in range' stats (more on that in another post). But recently, although occasionally Threepio acts autonomously and silently to dodge some hypos, more often than not I am having to use warbling alarms to check that SmartGuard isn't just mangling a carefully judged prebolus timing, or I'm getting a notification of a 'suspend' when I've already set a 0% TBR an hour before to cope with such extreme exertions as 'walking round the corner to the shops'.

I currently seem to be extra sensitive to carbs, very sensitive to 'stacked' insulin (overlapping doses acting together), highly sensitive to any form of activity AT ALL when I have any insulin on board, and generally insulin seems to be delighting in a nothing... nothing... nothing... EVERYTHING activity curve. Or not. Depending on the day.

Without sensors I would have been completely lost.

It reminded me of previous phases in my diabetes life when my diabetes would occasionally give me a week or two off.

Let me explain...

There were times when *all* I had to do was estimate carbs in whatever I was eating and deliver the doseto my insulin:carb ratio alongside my basal pattern (and correction factor). And the doses would work. Reliably. For. A. Whole. Week!!

And if I made a small error of judgement in terms of carbs in a meal I could administer the suggested correction dose... and that would bring me to mid-range within about 3-4 hours.

Bliss!

Of course, there's still quite a lot of effort going on there. Carefully tweaked and tested insulin doses, and dose timings. Meal and activity strategies that have been tested, and food choices that have been tailored to try to reduce the bewildering number of variables that life with type 1 diabetes involves.

But when that effort actually works. For whole days, or a whole week on the trot, it genuinely felt like a holiday.

The carb counting and dosing... the fingersticks and correction factors? For me those are the easy bit. They are absorbed into the rhythm of my life so that I barely notice them any more.

What I DO notice, what I find really tough, is the constant faff of putting in all that effort. Of playing my part as carefully as I can... only to get chaotic and unpredictable results back in return. Constantly feeling like I've got it 'wrong'. That I could (should?) have done better. The silent condemnation of BG readings from doses that didn't absorb properly, misjudged exercise, or insulin requirements that seem to change at the drop of a hat.

The 'that didn't happen yesterday's

The 'what on earth went on there's

If T1D was only a bit more predictable, if it would only stick to its own rules, it would be an awful lot easier to live with.

Happy holidays everyone.

Posted by on Monday, 15 April 2019

Guest Post: From Dx to X2 (Tandem T:Slim) by Robert S

This is a guest post by Robert S who dropped me a line via FaceTwit as he had been  writing down his 'diabetes story' but didn't have a blog to share it on. Apparently he has been good enough (or mad enough?) to read my ramblings in the past and offered it as a guest post for sharing here. His story echoes much of my own, and I am very interested to read that he has chosen the Tandem T:slim X2 insulin pump out of the current offerings, as that is one I have quietly got my eye on too. Here is Robert's story. Enjoy!

Tandem T:slim X2
My Diabetes Story, by Robert S

I was diagnosed in 1994 at the age of 38, about 10 years after my older sister who had (eventually) been diagnosed at a similar age. I was given a number of very vague, unhelpful leaflets & sent on my way.

I spent the next few years religiously taking insulin as instructed but with pretty poor results.

Diabetes clinics were a trial for me, with many 'must do betters' but precious little advice on how to achieve this. Several times I was mistaken for type 2 & had some very odd conversations. I probably presented as typical type 2, middle aged and overweight, and most people at the clinic were type 2. However they clearly hadn't read my notes which didn't inspire confidence.

I was divorced during this period so I was very much dealing with it on my own.

The internet arrived & eventually I discovered diabetes forums. Wow, what a revelation! There were other people having the same problems as me. A LOT of people! Bad news for them but a great relief that it wasn't just me.

Importantly some of these people were working to improve their diabetes & describing how.

At the time of my diagnosis carbohydrate 'exchanges' seemed to be going out of favour but for me, at least, carb counting was a very vague concept.

The forums prompted me to do the online carb counting course set up by Bournemouth Diabetes & Endocrinology Centre (BDEC). It didn't solve all my problems but for the first time I felt I had a method for moving forward.

By this time I had moved from 'Humulin I' & 'Humulin S' to a basal/bolus regime, which also helped.

My GP surgery contacted me suggesting that they monitor my diabetes now they had a Diabetes Nurse. Being rather disillusioned by my experiences in the clinic system I accepted.

I enjoy programming & wrote software for my phone to record everything & do some basic dosage computations. My HbA1c had never been really terrible, usually in the low 8s (8% or 64mmol/mol, Ed), but I honestly don't know how. Some hard work got it down to the mid 7s (7.5% or 59mmol/mol, Ed).

So the situation had improved somewhat & I felt more in control.

Sadly, another event encouraged my efforts, as my sister died from diabetic complications at the age of 64.

From the beginning hypos were an almost daily event. The worst being overnight. I've always had good hypo warnings, but at night hypos tend to progress further & I would wake up soaked in sweat.

By 2013 though, the overnight hypos seemed to be worse. I discussed it with the diabetes nurse at my GP practice but the best advice was always eat some supper & don't go to bed below 8mmol/L. I was already doing this.

I'd read about Continuous Glucose Monitors (CGMs) which looked very interesting, but were way too expensive for me and, I noted, you still needed to do finger sticks.

Things came to a head on Boxing Day night 2013. I was away staying (alone) in a hotel & I woke up with a hypo around 1:30. Dragged myself out of bed managed to force a some glucose tablets & a biscuit down me & fell asleep. The next thing I knew I was waking curled up in a ball under the duvet, sweating yet shivering to the point where my teeth were chattering continuously. The worst thing was that I couldn't move to do anything about it. Eventually I fell asleep wondering if I'd wake up.

I decided to self fund a Dexcom G4, at least for a while. By the end of January 2014 I was wearing my first CGM. I watched it obsessively. On the second day I attended a graduation ceremony and was offered a glass of Bucks Fizz & a blueberry muffin. I thought I was being sensible & only ate about a third of the muffin & bolused for it. The effect on my blood sugars was fascinating. I watched as the graph went up, & up & up. I don't remember how high but it was an eye opener.

Initially it was more about the alarms which warned me in time to stop low blood sugars. Still annoying at night but I no longer woke up sweating.

I began to learn from the readings. The first big thing I noticed was a fairly consistent dip in my blood sugars around 1:30 to 2:30 in the morning. This made it difficult get my overnight average to a sensible level & went some way to explaining the nocturnal hypos. I tried varying the time that I was injecting my basal (Lantus) moving it from evening to morning, or splitting the dose. Nothing was really satisfactory.

Someone in the DOC (Diabetes Online Community) suggested changing my basal insulin. After chatting to my GP I moved to Levemir. I had a lot of trouble sorting out the dose, being quite worried that I had to take so much more than I had of Lantus. It was a split dosage & gradual adjustments left morning/evening doses very different, but, it was working. I saw some fairly horizontal overnight graphs, something I'd never ever seen before.

This encouraged me & I also made other adjustments; splitting boluses for some meals, not being afraid to do corrections between meals & so on.

Nothing was perfect but I did feel more 'in control'. Things still went wrong but when they did I was confident I could put it right. My HbA1c went below 7% (53mmol/mol) for the first time.

Using online instructions I built a box of electronics which allowed my Dexcom sensor data to be transmitted to my mobile phone. Thanks to #WeAreNotWaiting I set up a NightScout website to display my data.

This was all great, but hard work. I was doing a lot of injections, up to 12 a day. Also absorption of my basal injections was rather erratic, sometimes as I would expect, sometimes not. The best location was my thigh, but despite rotating sites there were problems.

By this time I'd been reading about hybrid closed loop (artificial pancreas) systems. First the DIY systems OpenAPS, Loop, and AndroidAPS, then the first commercial system the Medtronic 670G. This was exciting stuff but it was clear that first you needed to have an insulin pump. I had in fact been offered one about 15 years before but was then horrified at the thought of being permanently connected to the thing.

I decided I would now like to try one. It was not something my GP surgery could sort out so I had to be referred back to the hospital. This proved to be a long process, several months. I still don't know why. Eventually it went through just before Christmas.

By the time I met up with the DSN at the hospital a month or so later I had all but convinced myself I was wasting my time as control was simply too good?

Sure enough the DSN was impressed with my readings but it didn't help my case. I pointed out that I was doing a lot of injections each day. Not relevant.

"How many hypos do you have?"
"Hardly any."
"Yes, but that's with the Dexcom you are funding?" This wonderful lady was on my side & looking to find a way.
"Lots, nasty ones, that's why I bought it"
"That's it! Now let's have a look at the pumps you could have."

What! Really! To be honest I would have accepted some dusty old pump from the back of a drawer..

But when I focused on what she was saying I could barely believe my ears. I'd done a lot of homework on pumps & she was mentioning the Medtronic MM640G & the most advanced, the 'Artificial Pancreas' MM670G.

Then she added the Tandem T:slim X2 to the list. Again I'd read about it but thought it was only available in the USA. Positively it would soon be linked to the Dexcom G6 I was already using. I love my G6 & it seems to compare favourably with the Medtronic sensors. (Not that I had any personal experience of them).

Uniquely the software (firmware) of the X2 can be updated & in the UK will soon include Basal-IQ, a system which automatically suspends insulin if it thinks you will go low. There is also the promise of a full hybrid closed loop option similar to the Medtronic 670G - again an over the internet update.

I made my decision; the T:slim X2. By mid March after a couple of training sessions, I walked out of the hospital attached to my pump. Very exciting & not a little nerve racking!

We had agreed a 30% reduction in the basal dosage compared to my Levemir. A profile was set up.

During the evening it became clear to me that this was still too much & changed to an 80% temporary basal rate (TBR).

My Dexcom woke me about 1:30. I dropped the temporary basal to 75% and had a small snack. Readings got 'stuck' in the low 4s & eventually I ate again and reduced to a 60% TBR.

So not much sleep but at least I was closer to the required dosage. One thing that I kept thinking that night was "How does anyone do this without a CGM??" Presumably they start with a much more conservative dosage.

I had worried about what to do with the pump at night, and it was a problem. Clipping it on my waistband sort of worked but it would slide along to an uncomfortable place or slip off completely. I now have a 'Spibelt' with a pocket for the pump which is much better.

A week in now & I'm doing remarkably well, some days over 90% of my readings have been 'in range' - between 3.9 & 9.9mmol/L. I know this is probably just a 'honeymoon period', having had type 1 for over 20 years I find I'm waiting for reality to reassert itself & everything to go wrong...

The pump itself is a very neat device. It is small & has a nice clear touch screen. If you are used to smartphones then it is easy to use. It seems well made, time will tell.

I've had some practice with temporary basal rates as mentioned but I've also been playing with 'Extended Boluses' a new concept to me, promising, but I need to experiment.

As with all pumps the big advantage is the same as the big disadvantage - namely that it is always connected to you. It's great that I don't have to remember my pens & I won't miss those injections - I stopped counting at about 50,000 several years ago.

A big advantage is that you have a record of every dose. No longer do I have to wonder 'Did I do that or not?'

There's also the precision of boluses & the in built Bolus Wizard (Calculator). I am learning to trust the IOB (Insulin On Board) figure on the pump. Previously I had tended to intervene too soon when blood sugars rose quickly.

I'm told that changing infusion sets on the X2 is slow, but it seems OK to me having never used anything else.

I'm looking forward to improving my settings & the upgrades mentioned above.

For the first time in my diabetic life I feel as though I am 'ahead of the game', and yes, I know I am lucky.

Diabetes has never been so interesting!

By Robert S.

Posted by on Tuesday, 9 April 2019

Libre Limbo

As of the beginning of April the new national NHS England criteria for obtaining Freestyle Libre on prescription came into effect. This is who it says should have access to Libre on the NHS:

  1. People with Type 1 diabetes OR with any form of diabetes on hemodialysis and on insulin treatment who, in either of the above, are clinically indicated as requiring intensive monitoring >8 times daily, as demonstrated on a meter download/review over the past 3 months OR with diabetes associated with cystic fibrosis on insulin treatment
  2. Pregnant women with Type 1 Diabetes -12 months in total inclusive of post-delivery period.
  3. People with Type 1 diabetes unable to routinely self-monitor blood glucose due to disability who require carers to support glucose monitoring and insulin management. 
  4. People with Type 1 diabetes for whom the specialist diabetes MDT determines have occupational (e.g. working in insufficiently hygienic conditions to safely facilitate finger-prick testing) or psychosocial circumstances that warrant a 6-month trial of Libre with appropriate adjunct support. 
  5. Previous self-funders of Flash Glucose Monitors with Type 1 diabetes where those with clinical responsibility for their diabetes care are satisfied that their clinical history suggests that they would have satisfied one or more of these criteria prior to them commencing use of Flash Glucose Monitoring had these criteria been in place prior to April 2019 AND has shown improvement in HbA1c since self-funding.
  6. For those with Type 1 diabetes and recurrent severe hypoglycemia or impaired awareness of hypoglycemia, NICE suggests that Continuous Glucose Monitoring with an alarm is the standard. Other evidence-based alternatives with NICE guidance or NICE TA support are pump therapy, psychological support, structured education, islet transplantation and whole pancreas transplantation.However, if the person with diabetes and their clinician consider that a Flash Glucose Monitoring system would be more appropriate for the individual’s specific situation, then this can be considered.
Other requirements:
  1. Education on Flash Glucose Monitoring has been provided (online or in person)
  2. Agree to scan glucose levels no less than 8 times per day and use the sensor >70% of the time.
  3. Agree to regular reviews with the local clinical team.
  4. Previous attendance, or due consideration given to future attendance, at a Type 1 diabetes structured education programme (DAFNE or equivalent if available locally)

Well this all sounds very promising for my perforated fingers... but unfortunately I find myself somewhat in Libre limbo.

I had my annual toe-tickling / BP / weight check appointment at my GP surgery towards the end of March, and mentioned these new criteria and asked about Libre. The nurse who runs the diabetes reviews at my surgery is also one of the DSNs at the hospital pump clinic that I attend, and was able to tell me that all Libre requests in my area were going to be handled in 'secondary care' (that's 'at the hospital' for those that don't speak fluent Healthcare Professional). The suggestion made to me was that since there was not really time in people's regular clinic appointments to deal with all this stuff, that special extra sessions would be being arranged for anyone who was interested in Libre.

At some point fairly soon I'm pretty sure I'll be contacted for my annual* pump clinic appointment (last one was over a year ago). So now I don't know whether to wait and see whether I get an appointment and ask the same nurse I saw a few weeks back (but sat at a different desk) whether I can get another appointment at one of the Libre sessions. Or whether I should try to work my way through the labyrinthine appointment telephone system to try to speak to someone and ask a) if they've ever heard of these extra clinics and b) whether I can come. Then wait for that appointment to come through and see what they say.

* actual timings may vary

Frankly the very thought of it all is exhausting, and I am unable to even summon the energy to decide which of those options is the least teeth grinding, let alone make any of the necessary phone calls.

EDIT: The day after I posted this, I got the letter to book my appointment for pump clinic, so it looks like I'll be rolling with option 1. Next available appointment was mid July, so I've a little while to wait yet I think.

In other Libre news, as part of my position as one of the PWD representatives on the Diabetes Technology Network (DTN) I was involved in reviewing and contributing to a set of excellent video resources to help both people with diabetes and their families, along with nurses and clinicans get the most out of the Freestyle Libre. As part of the project I offered my own meandering thoughts on living with Libre, and took part in a live 'webcast' of the videos. If you missed it you can catch up with the videos and also a recording of the Q&A session on the Association of British Clinical Diabetologists website. The full set of videos and further webcasts will be added as the weeks go by and in all should provide an excellent source of information and guidance as more and more people get access to Freestyle Libre.


Disclaimer. DTN/ABCD paid my train fare to get to the initial meeting to discuss/review the course content, and then to the video recordings. They also gave me a thank-you card with an entirely unexpected voucher in it which was very lovely of them. I was not paid to take part or write this post, and all opinions shared are entirely my own. I mean... who else would want them?