Back To The Future

Great Scott! Or similar words have been exclaimed by me since the summer of 2023. The reason for such excitement? Hybrid Closed Loop. You've probably read some of my gushing on the subject and I continue to talk positively about it today because... well, sleep never gets old.

Prior to HCL, like many using the tech, I was using a pump and various types of CGMs separately and that was perfectly acceptable. My numbers were as good as they'd ever been; Great Time In Range & HbA1c. I felt no urgency to switch to closed loop.

As is often the case, talking to peers results in changes and it was an unrelated conversation that resulted in one kind person sending me a spare Dexcom G6 transmitter... then another from another person... and Anubis transmitters from two others. People within the diabetes community are really very kind. All that tech meant I could try HCL for a good while - over 6 months. So, I did.

There are lots of posts about how well things went for me in that period. Towards the end of my HCL time, I had my diabetes review with my consultant. He agreed that HCL was working well for me and that funding would be discussed at an upcoming meeting. Fantastic!

Of course, the tech expired as tech has that annoying habit of doing. I thought nothing much of it. I assumed it would be a seamless transition back to simple pumping and CGM use. It was. Reinstalling the old app was a pain in the neck because I can never remember usernames and passwords but, after some swearing and sweating, I managed to get set up again with Dexcom One. Quite soon, I realised just how much work I was putting in to this type of management compared to the recently ended Hybrid Closed Loop days.

The numbers were not looking great. *sigh* I thought I'll get through the life of the current sensor, then I'll buy a G6 transmitter and hop back aboard the Looping train. I noted the difference in managing Type 1 Diabetes through HCL vs standard pumping, on X. Peer support came to the rescue (again). Another spare G6 transmitter landed on my doormat just two days later. The #PayItForward movement is a remarkable one. My donor would not accept any reimbursement for postage. Blessed, I promised to donate something to my favourite diabetes charity - Action4Diabetes as my own Pay It Forward. Of course, if I'm ever in a similar position to my donor friend, I will do the same thing for others. 

So, I'm back in the future! and over the last few days, the numbers are already proving how incredible the technology is once again. When just pumping and using a CGM separately, my average blood glucose was 8.5 mmol/L. I know that's not terrible, really. Yet, I could "feel" it. I was sluggish and just... blunted. Finding the right words is difficult. Needless to say, I was not myself.

And after a few days in the loop?...

Already, a significant difference over the previous 2 days. I think the numbers speak for themselves. You've probably read enough gushing from me, by now.

What happens next? I'm going to relay my experience and thoughts to my diabetes team. To move to HCL, then move off it, then move on to it again seems a little unusual and they may benefit from hearing about what has happened while looking at the data.

Also, and I've said it many times, I can never repay those who have been kind to me over my diabetes in the last 7 years - since opening up and talking about it online. I do try through various means. Some of those don't sit well with everybody and that's alright. Even the kindest will meet opposition and anger and jealousy. Do good things with good people. You'll usually finish up sleeping soundly, especially if you're using Closed Loop! 

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Keep Me In The Loop

Type 1 Diabetes tech can advance pretty quickly. Even access to it, in some areas, has greatly improved in recent times and for that we have much to be grateful for. Of course, there is far more to do than has already been done. There are many who struggle to access some very basic things and, in the UK at least, a yawning disparity in care is obvious between areas. If the playing field will ever be levelled is debatable. With my most optimistic hat on, it seems certain to be a drawn process, as with many aspects of NHS care.

Yet! We continue to advance diabetes care in the UK (probably beyond) thanks to a little thing called "Peer support" Actually, it's not little at all. In terms of numbers, the peer support groups both online and in person, have grown enormously over the last few years. Indeed, you'll see diabetes-care-engaged HCPs communicating with these groups, recognising their importance, referring patients, etc. 

For me, it's not little at all in terms of the impact on my health and life.

Back in 2017, I had recently reached a "milestone age" and after going through a great deal of diabetes related issues I thought it was time to get to grips with my T1D. The story is long and rather dull, in short it involved creating social media and forum accounts, sharing, learning and trying to be the best diabetic that I could be. I anticipated that I'd be largely on my own, that I'd pick up a few useful tips among the keto scams and cinnamon cures. I was wrong, I was definitely not on my own.

If you arrived here via Twitter, there is a great chance that you already know about #GBDoc. It is a tremendous community, run entirely by volunteers who just want to learn and stay well as much as everyone else. I mention the hashtag often and I do promote the community when the opportunity arises. I don't run it or have any influence in what happens. I'm a volunteer, learning, trying to stay well and hopefully assisting others in the same.

I try to give as much as possible to my peers within #GBDoc because since day one I have been inundated with kindness. Sure, as with any community, there will be disagreements and people will come and go. Yet, the core of #GBDoc has remained and from everything I've read and learned, I believe the community has evolved into a more inclusive, community driven, place rather than the individually run entity it once was.

In the last six and a half years, I have met hundreds of community members in person. I'm very likely to meet hundreds more. Each time, it was a delight. I love to learn about others, to talk, to laugh and to share experiences. From the hundreds, I have close bonds with many people who are now incredibly good friends. If you enjoy socialising then #GBDoc can certainly improve that aspect of your life!

Let's focus on the direct impact that peer support has had on my health. In 2017, I was finger pricking and injecting and that was the extent of my T1D management. Today, I write this blog post as somebody who is using Hybrid Closed Loop to manage my diabetes. Essentially, an insulin pump is communicating with a CGM to make frequent adjustments to my insulin dose without my input, aside from entering carb counts and other very minimal-effort engagements (see the photo used for this post). If you don't have T1D, your pancreas does a similar job, but this is not an artificial pancreas. I'll blog more about HCL in a week or two. 

HCL is the latest development from my accessing of the peer support in #GBDoc. Before that, there have been many other examples of help from the community members. Items include:

- A donated insulin pump

- Many donated insulin pump consumables

- CGM transmitters

- CGM and Flash sensors

- Ketones test strips

- Glucose drinks

- Sweets, chocolates, lots of coffees!

The last one might not be hugely impactful on my diabetes management, but it helps and they were much appreciated! I didn't ask for any of those items. Various individuals took it upon themselves to offer their time, energy and money to help me. The physical items are one thing, the enormous amount of education is something else. There really is no better place to learn about T1D than from those who live with it. Every little snippet of info, every little trick, hack, guidance and signposting is a little bit more ammunition to go to war with. Over the years, I've absorbed it all. It feels like I've studied for a medical degree in some respects.

Of course, I do what I can to give back. "Pay it forward" is the often used term for a good deed. I won't list my involvements in diabetes related initiatives in this post. This post is about the others who do wonderful, kind, things for people without really realising the positive impact it can have. You are saving lives, prolonging lives, improving lives. I don't write that sentence flippantly. I truly believe it. You may never be officially recognised, but I see you. Thank you.

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Dexcom One CGM - In Review

It's been a number of years since I last used a Dexcom CGM. In 2018 and 2019, I used the Dexcom G5 followed by the G6 and my experience was "patchy" for various reasons. So, it was with hesitancy that I accepted the Dexcom One "Starter Pack" during my latest diabetes review appointment. It was offered to me following the sharing of my experiences of Freestyle Libre 2.

Firstly, how wonderful to have a choice of blood glucose tech. I know most areas in England and Wales are offering a choice of Libre 2 or Dex One yet many are still finding it difficult to access one or the other - mostly Dex One - at the time of writing this blog post.

The Starter Pack contains everything you need for 10 days CGM use - 1 transmitter and 1 sensor. You'll need to install the Dexcom app on your phone and create an account if you don't have one already. Then, you're ready to go!

You'll need to "pair" your phone with your Dexcom One transmitter. Pairing is a simple process, just follow the steps on your phone screen. Once you are paired up, you can insert the sensor using the single use applicator. By the way, be sure your phone is compatible with the CGM. Dexcom will have a list of compatible handsets on their website. 

The sensor applicator looks and feels a little like a computer mouse. There is one orange button to insert the sensor under your skin and a small protective orange strip to cover it. You'll need to snap that off before you press the orange button. You'll also need to remove the two slips of paper that cover the sensor adhesive area. Once the paper is removed, hold the applicator against your skin and press the button. Sensor inserted! Just ease away the applicator and dispose of it as best as you can. It's a pretty chunky lump, making recycling difficult. Some have suggested breaking it up with a hammer to make recycling easier. I think Dexcom could do a lot more to be planet friendly, here.

Before you go waving a hammer around, pop the transmitter into your sensor. Next, follow the app instructions to begin the warm up process. If you've never used a Dexcom CGM before, then get ready for a wait. The Dexcom One takes 2 hours to warm up so, maybe don't do this right before bed.

The warm up process was problem-free and BG values began to appear. The first few readings were pretty close to my actual blood glucose. "Great!" I thought, until my BG dropped so low that numbers became letters on the Dexcom app. However, I wasn't hypo. Things didn't get any better for a good 6 hours, throughout that time I remained outside of the hypo zone. I decided to let the CGM "bed in" and, erm, go to bed.

I don't know if it was just really tired from sitting in a box on my living room floor for a few days, but the rest seemed to do the CGM good! Fasting BG in the morning was very close to the Dex One number, which was also very close to the Libre 2 number (I'm wearing both devices at the same time). 

Heading towards 7 days with Dex One, I've become comfortable with it and I have begun to trust it. Compared to Libre 2, it has been closer to my actual BG for more of the time.... just! The difference between the two is very minimal for me. L2 is reading a little lower (it usually does) than Dex One, but not by worrying amounts. 0.5 mmol perhaps as an average.

Accuracy aside, the Dexcom One app is a very stripped out affair compared to LibreLink. It will offer some eA1c info via Clarity and some Time In Range data, but there is no place to leave notes and no way to screenshot the app. Read this in your best Nick Jonas voice - No screenshots? Really?! Some of you are going to suggest using third party apps and you're right. You can screenshot and note leave using different apps. However, I'm not a fan of unofficial apps when it comes to my data, support, security, yada yada. Also, the tech newbies don't want to be overwhelmed by having to install multiple apps to do things they could do with one app on LibreLink. I'm not a newbie, I'm just big hearted and I care about the people who are.

The app is my only gripe, really. Yet, it works and how often am I going to leave passive-aggressive notes about the sensor accuracy? Do I really need to screenshot my BG to encourage keto diet zealots to question how long I'll be keeping my toes with those numbers? Maybe not. I've drifted off track. My gripes aren't a big deal. They're little annoyances. The important thing is the CGM works well. At least, after the first 6 hours.... 8 hours if you include the warm up. Yeah, that first day is pretty annoying. I can accommodate that, though.

What else? 

- It's ergonomic. No sharp edges to catch on clothes, bed sheets, other humans, etc.

- It's simple to set up. Minimal steps and great on-screen instructions.

- Satisfactory accuracy vs Libre 2.

- 10 day wear isn't wonderful. That's 3 sensors per month vs the near 2 for Libre.

- 90 day transmitter usage is... okay... remember GlucoMen Day have rechargeable transmitters that last for 5 years.

- Waste could be better. That big lump of applicator, 3 times per month. Eeek.

That's about it. Soon, I'll need to make a choice for NHS purposes. Dexcom One or Libre 2. Which one do you use? Have you been given a choice?  

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The Importance of Diabetes Community

It has been around six years since I took a deep breath and pressed the record button on the video app of my phone. I blundered through an introduction video, deleted it, wrote a script, blundered through that and deleted it. Eventually, I decided on something that was a few minutes long and sent it to my YouTube channel. Of course, nothing happened. It did get a few views! Really... just a few, but that was enough to inspire me to make more and seek out others who live with Type 1 Diabetes. I'm so very glad that I did.

The last six years have been eye opening, jaw dropping, heart wrenching, gut churning, annoying and, most importantly, absolutely wonderful. The good, the bad and the ugly have all visited my social media accounts. The vast majority of the visits have been good and that's why I'm writing this new blog post. The good has had such a profound effect upon my diabetes, my outlook, my social life and my confidence. The good comes in the form of community.

I think it's only fair that I start with GBDoc. You probably knew that was coming! But, what a remarkable community of people and such longevity! GBDoc has been around for far longer than I have in diabetes social media, over a decade apparently. It has had many guises, many volunteers, a few leaders, thousands of members, several platforms, a website, controversy, love, hate and friendship. Sometimes, it feels like Eastenders with boluses - only the acting is better and the story lines are more interesting. Drama aside, the support and information from GBDoc has been incredible. I wonder where I might be in my T1D journey without this community? Where might you be? I suspect much worse off, maybe less knowledgeable, struggling for tech access, more isolated...

...GBDoc isn't the only diabetes community. Different countries have their own communities and that makes perfect sense as healthcare, access to meds and tech, societal differences, etc can differ hugely between nations. Some communities try to cover a global "scene" and that's cool too. From other people, other countries, other values, other uses of language, we can learn a great deal alongside (for me at least) helping to recognise privilege.

Communities are very fluid places. As time passes, people come and go perhaps because they have gained the help and information they need, perhaps they didn't get what they expected, maybe they died! Many reasons can cause the disappearance of an individual from an online community just as many reasons can bring about new faces. 

In my six years of community engagement I have gained so many friends - I really couldn't list them all without forgetting a few. Some have been friends for almost the entire six years and I hope they remain so for the rest of our days. Some have drifted away, a few decided to not be friends at all after a while. That seems like very normal human behaviour and I'm quite accepting of it. Community makes friendship easier to develop and blossom. If you're feeling isolated and lonely with your diabetes then the community could be the answer.

 Away from being bestie mates with lots of new people, your diabetes could benefit hugely from community engagement. Hybrid Closed Loop (not an artificial pancreas) looks likely to be a hot topic for the years ahead in the UK. Yet, most diabetics are not using that technology right now. That means a lot of learning and understanding is on the horizon for people who may want to try HCL (criteria dependant, naturally). The same was true of Libre, CGMs, Smart Pens and Insulin Pumps - less complex than HCL, perhaps, but the usage experiences of peers have proved invaluable to many.

So, you've got new friends and new tech. Now what? Maybe you struggle with the mental burden of having diabetes? Maybe you've heard of talking therapy? That's exactly what a community can offer. Put your grown up pants on and start talking, tweeting, posting, whatever! You'll be surprised at who understands your issues and reaches out to offer an ear. And it helps! To not feel alone in your struggles can ease your burden even if no immediate solution is found. What is the old saying about a problem shared is a problem halved?

Do you need more? Well, community doesn't always mean serious. I've had some hugely fun days out with my friends from GBDoc, we play quizzes, fantasy football and cruel but funny practical jokes on each other! Other skills are shared via a Stitch Club. Books are read at the same time, films and TV shows via watch-a-longs, hobbies and interests shared and enhanced because of new diabetic friends who just enjoy the same things. Maybe you enjoy gaming? gotcha! Art? gotcha! The list of interests is huge and you'll likely find someone who enjoys the things that you do with no relevance to diabetes apart from being in the wonky pancreas gang.

By the way, serious can also be lovely. Some friendships have developed into more and dating, even marriage, has happened. 

If life dealt you a bad hand with diabetes, you can still win the pot if you play your cards right. I'm turning into Bruce Forsyth. Good blog, good blog. 

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38

I find it difficult to avoid reflecting on events when an anniversary approaches. Sometimes, that reflection is very positive!- many great things have happened in my life. Sometimes, it's less positive and it's difficult to avoid wondering "what if..."

What if I wasn't diagnosed with Type 1 Diabetes on my 8th birthday in 1984? How different might my life have been? Pretty deep questions and I imagine many of you have asked yourself the same. It's a pointless thing to do, of course, because we can't change what has been and each time I allow myself to ponder the impossible that is quickly where my thoughts finish. Acceptance is a massive part of living with diabetes and probably many other conditions and disabilities. With no cure in sight, it's important to play the hand that life gave to you. If you're still in the game then you haven't lost even if life dealt you a hand that looks like a foot. A diabetic foot?  No, let's not go there!

Acceptance is where I am with my T1D. It's given me a kicking, robbed me of various things not least some of my eyesight, yet I don't feel anger or upset towards it. I've been through the grief and it's a very normal thing to experience when you're diagnosed with a chronic illness and any complications from that - if you're going through that then please don't feel that it's wrong or weird. Hopefully, you'll get to the stage of acceptance and playing your foot of a hand as best as you can.

Acceptance is now, of course. I'm 45 (at the time of publishing) for one more day but who knows what 50 will look like? Will complications strike and leave me a bitter, yet young looking, 50 year old? Considering the future is a very middle aged thing to do, I think. Considering the future when you've had T1D for almost 4 decades brings up many different thoughts alongside the sports car, leather trousers and inappropriate relationships with women 20 years your junior. It's easy to slip into thinking the worst but maybe the focus should be on the possible good, if not great, things that the future could hold. Diabetes tech has exploded in the last 5 - 10 years. I write this blog post, today, with the most stable T1D that I've ever had thanks to technology, largely and peer support. There is no reason why that can't continue or even improve further. There is no reason for me to not be here in 30 years, 40 years or more, assuming I don't get hit by a bus or develop a terminal illness. That might be disappointing for some of you on social media but the same applies to you too. Life with T1D is improving all the time and while we might not witness a cure, I think we can still live full, exciting, wonderful lives if we embrace the condition and do what we can to manage it - that will differ from person to person, I know.

Young adult me didn't care about acceptance of T1D, teenage me preferred to ignore it and the 7 year old me who was desperately ill on this day 38 years ago just wanted to stop drinking water and peeing every 5 minutes, to play with his Star Wars toys. 

Perhaps peer support is the key in helping others to find acceptance. I try to offer support to others when I can. I've mentored, created areas for others to talk, promoted community, written articles, spoken on podcasts and radio shows and jumped at the chance of helping my friends and peers when the opportunity has presented itself. That might seem like a lot if you're juggling your family life and a full time job. It is! Sometimes, my day is full of work and diabetes advocacy from waking until I sleep again. I'm not complaining, I have taken far more from talking about diabetes than I have repaid. Talking about your diabetes is what you can do to support your peers. By doing that, you're normalising the condition and all the little annoyances, major traumas, sleep losses and victories which you experience. Talk honestly, use your own words and terminology - there is no wrong way to talk about your diabetes. 

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Upgrade

I wrote a tweet, a few days ago, where I mentioned my new insulin pump set up appointment. It's been a long time in the coming. You may have read some of my Path to Pumping blog posts, which began in 2021 and ran into this year. I'm still on "The Path" but the finishing line is very much in sight. It's been a journey, only matched by reality TV contestants as they reach the final stages before returning to a life of obscurity, and I'm delighted to finally be moving on - on to a new NHS funded pump and consumables and a reassuring warranty. 

The tweet? Yes, I noted that the upgrading of Diabetes tech is a strange, almost emotional, affair. Not at all like upgrading a phone or a TV. I thought nothing more of it yet, the tweet got a surprising amount of Likes and some offered their thoughts which seemed to be in agreement. Fantastic, I do enjoy social media engagement. However, that particular tweet must've reached more eyeballs than I thought and, following a few messages and emails, I'll be talking to Diabetes UK's Balance magazine on Sunday to discuss the subject of T1D and tech & upgrades.

The subject has been bouncing around in my brain since agreeing to the interview. The words of others have found my "hard relate" button. I don't know of any other technology to have had such a profound affect on my life. A car certainly changes a person's life, affording us more freedom, and if you pass your driving test at 17 then freedom is a huge thing! But, if I didn't pass my test, didn't get a car, then I suspect my life would've gone in a similar direction - probably less nipping out for a takeaway! Indeed, I haven't driven for 12 years and I've got by thanks to various other drivers. Really, that's as close as other technology has got to matching diabetes tech for me and it's still a million miles away.

I think the subject underlines just how much I value my health, today compared to the the years gone by and also how incredibly important access to this technology is. I've seen the data for things such as HbA1c and Flash / CGM use, there are likely similar numbers kicking around for insulin pumps and, lately, looping. The cold, hard, numbers are important but they don't give the full picture. 

Technology has reduced my T1D burden beyond how I can express it in words. I feel that it's reduced it to such an extent that I don't have the T1D that I used to have. It does't feel like the full condition, now. Don't get me wrong, it's still absolutely crap on many occasions but not nearly as much work as when life was full of injections and finger pricks. I've noted many times; I'm blessed. My fund raising for Action 4 Diabetes and learning about their work in South East Asia has really underlined to me just how blessed I am.

The pump switch over is on Monday afternoon and I'm really going to miss this little black chunk of plastic and metal and battery. I've upgraded my CGMs, moved to different ones, taken CGM breaks, etc many times in the last 5 years but since starting on pump therapy I've remained on pump therapy. That'll be 15 months without an insulin injection. I've grown to love the pump. It's on my person all the time unless I'm taking a shower, we go on walks together, meals out, it's met my friends and I spoon it to sleep at night. Next week, it'll be safely back in its box with the battery removed. Another will take its place and do the same job in keeping me alive and well. Soon after, I'll say goodbye forever as the old pump is sent to another living with T1D. I promised to pay it forward and that's what will happen.

Not exactly a tear jerking moment, I know. It's a great moment for me and the next person to use the old pump. Paying it forward is a great thing, too. If you do find yourself in possession of spares then try to not let them waste away. There is nearly always somebody else who can use your old tech or consumables so pass them on... oh! and don't go profiting from it. I know some have sold pumps and fair enough if you bought it in the first instance but, if that tech came from the NHS then please give it back so they can use it to train staff members - assuming you know of nobody who you can pass it to for free. 

Upgrading diabetes tech is so different to upgrading our home technologies, our cars, the machines we use at work, etc. None of those will likely improve your health, I suspect very few of them wake up with you in the morning and it's unlikely that you'll get the opportunity or have the inclination to pay them forward.

 Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Take It Easy

A couple of days ago, I tweeted about Time In Range. It was a tweet inspired by my previous week of blood glucose data which saw six days of fabulous numbers then one day of less than fabulous. As day 7 progressed and I struggled to establish a BG under 10, I felt the frustration build. My 24hr TIR was 33% and I was beginning to get pretty irritated by what I was seeing. Perhaps that is something you've experienced? Our hard work can pay off on one day then the same hard work just will not yield the same results on another day. Annoying, huh?!

Prior to that TIR tweet, I had recently been involved in many discussions surrounding research. I'm rarely dismissive of any single person's experience unless it is dressed up as research. It is pretty difficult to accurately conclude a study based upon your own data, your own research of... yourself! There are tonnes of problems with that from having the absolute minimum in sample size to your own biased, skewed, point of view. Research should involve big numbers, where possible. Many aspects of Diabetes are researched to form what is deemed as a good opinion or even safe advice. Not all of that "research" has been conducted adequately to form a good conclusion. I'll leave it to you, reader, to discover the shoddy research which backs some aspects of Diabetes. Back to TIR!...

...and big numbers, your research, should apply when you're concluding how things are going in regards to your own management and your Time In Range. So, after the initial frustration of 33% TIR I made a coffee and had a few biscuits (bolused for, ofc) and relaxed. One poor day doesn't represent how hard I work to take care of my T1D. The same could be said for any period, really. A bad year isn't enough data to determine how hard you work to take care of your lifetime with T1D - maybe that bad year is only 2% of your time with T1D and you've been living through a pretty rough 12 months, personally? Perhaps there isn't an obvious reason because, as Diabetes loves to prove, there are very often no apparent reasons for what's going on.

The title of this blog post is Take It Easy and I think it's time for me to worry less about day to day fluctuations in my Time In Range. I have a lot of history and TIR data since using an insulin pump. I know that I float around 77% - 80% and I know that is a pretty good level of management so, why should I stress about a very tiny snapshot in time? I'm certainly going to try to be less of a drama llama about the numbers in future and try to remember my own words; you'll never be a perfect diabetic - there is no such person. Easier said than done! but I'll try.

I wonder if I/we worry about the wayward days because of the nature of our condition. Essentially, our body is attacking itself and we have no control over that happening despite it being OUR BODY! That's the crazy thing about this autoimmune disease; We have absolutely no say and no control in it happening. When it's here, we're left with trying to manage it to stay alive and stay well, no easy task. Perhaps now we have the tech and the data to establish some form of control, we think we can tame the beast every single day. Maybe we tame the beast so well, so often, that when we do have a wayward day it feels far more stressful and worrisome than it might if we were managing our T1D via guesses and infrequent finger pricks. 

All our technology and information is massively helpful (to me, at least) but it doesn't guarantee perfection, it is certainly not a cure. 

So, I'll end this short blog by encouraging you to not beat yourself up over your Diabetes and everything related to it. You will make mistakes and you will do everything right - that's called being human. Doing your best as often as you can is all you should aim for. Your best is not the T1D management of somebody else. You do you.

As you might have seen, a conflict has broken out in Ukraine as Russia has invaded that country. The scenes on TV and on social media are horrifying. What can we do? Well, I don't think there is a wrong way to help if you donate to charities who are active in helping the people of Ukraine. I support many charities but one which has always had my heart is MSF. Medecins Sans Frontieres translates as Doctors Without Borders. When it comes to the health of others in disaster areas, war zones and the like then I think we all have a duty to do what we can to help and help those who directly help! such as MSF. With that in mind, all donations to me via Buy Me a Coffee and all the pennies generated through the ads dotted around my pages will be donated to MSF. I will make up the difference for the fees taken by PayPal and Buy Me a Coffee. That will run until further notice, no time frames and possibly until Ukraine is a free country again. Thank you for reading my blog. 

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The Path To Pumping - Pt.9 Trials & Tribulations

Do you remember my last blog post on The Path To Pumping? I titled that one "Destination" as it appeared that we were coming in to land. We are! We still are! Please remain seated until we have reached the terminal, etc.

You may have already read on my tweets, I've had the call! The call to confirm my NHS pump funding. It was expected to go through without any problems but it was still nice to hear the words. I'm already pumping, as you probably know, since August of 2021 but my excitement was still very real. I can only imagine how MDI users must feel when they've been waiting for confirmation. My excitement stemmed from having one less thing to worry about. What if I was refused? My next avenue was to talk to my old friends in the media and that might've been a messy experience for so many - who are trying hard to open up access to technology for more people. I'm so glad that wasn't necessary but, a week after the call, I've had time to reflect on what has been necessary to get to this position. You might already know! I've documented each step on The Path To Pumping since day one. Shall we take a quick look back at the tribulations? 

Let's start with the positive refusals. Positive refusals?! Perhaps you've experienced the "You're doing great, you don't need a pump" line? You may have even responded with a counter-argument as to why you need a pump. Did the NICE criteria wall then appear? Yeah, same. And that happened on a couple of occasions. I have a lot of sympathy for HCPs who are under pressure from all angles. I'll even open my own blog to them to allow their voices to be heard by a greater audience. I want the bridge between them and patients to be a strong one. However, I'm rarely accepting of situations which I know are wrong, could be changed or improved. My use of MDI was a far inferior therapy compared to pumping, I had the hard data to prove it and a long, long list of QoL reasons to back that up further. Positive refusals were not going to wash.

The New Year was a busy period of pump "chasing". I spent countless hours writing emails to MPs, charity advocates, commissioners and even spent some time talking to a rather senior chap in Westminster. Following my emails, phone calls, meetings and letters the response from every avenue that I explored was sympathetic and understanding of my necessity to be NHS funded for a pump. It was encouraging and, looking back, I suspect a great number of influential people will now know a lot more about Type 1 Diabetes than they once did.

Finally, a new hospital, a new consultant, a new attitude and a new outcome. The best Diabetes appointment of my life because I was listened to. HCPs might be reading this and thinking "We all bloody listen". I wish that was true. Despite my visual impairment, I am very tuned-in to body language, responses, and general tells of disinterest which can come down to a simple change in voice tone. I played poker with some incredibly bright and successful people. In time, beyond the game, it teaches you things about human beings. Some of those things, when you learn what to look for, are obvious. Humans give away information all the time without needing to talk and the stressed and tired HCP isn't great at disguising their truths. So, the greatest appointment ever? I was listened to, asked questions which were relevant, noticed I was being observed carefully and understood when I offered my experiences and views. It must feel incredible to know that you've improved the life of your patient, that you're both on the same page, that you facilitated the progress in their care and use of technology. That is surely the job of an HCP; to improve or maintain the health of a patient? Are you really doing that if you block access to technology?

And here we are, some 9 months after putting a foot on The Path. Approved. The tribulations are seemingly over and the trials are starting. The photo at the top of the page is some Omnipod gear which my lovely DSN sent to me. She was kind enough to offer to squeeze me into a pump start-up appointment. I declined because I know how busy they are right now. I'll take my turn and that'll probably be later in summer. I'm already pumping, after all! I think it's fairer to give that space to somebody who needs to start on a pump more urgently than I do and fairer on the HCPs who are struggling to manage with the demands of patients. 

I'll try out the Omnipod stuff, probably breaking it along the way. I have also been approached by other pump companies to try out their stuff. That's likely because I have some social media presence - I get it. And I'll try it! I've already played around with a few new things. The future looks very bright. 

During The Path To Pumping, I have been approached by many Type 1 Diabetics who were in similar positions or simply interested in how to start the conversation in clinic. I can't count them all, I didn't keep a tally, nor am I interested in open praise, but I do know that several are now approved for pump funding or still pushing for it. That makes my heart happy because I know the huge improvements to my QoL that pumping has brought. I hope that you guys experience a similar improvement. Still being refused? Well, you know your own health better than anybody. If you're sure that a pump is the way to go then do not accept "No" or any other bullsh*t refusal. There are ways. It can be done.

To close this blog post; The battle for access should not have happened. The "cliff notes" above only touch the surface of the work I have put into obtaining pump funding. Pump funding which was right for me, a person living with T1D, a person who probably should've been listened to more carefully, situations and health considered better, evidence read and believed, and above all an acceptance of what the future holds. Diabetes care is evolving and technology is playing a bigger part than ever before. If you're pushing tech as the next step in Diabetes care then refusing it at any point cannot be without good reason. Patients are not guidelines or criteria.

As you might have seen, a conflict has broken out in Ukraine as Russia has invaded that country. The scenes on TV and on social media are horrifying. What can we do? Well, I don't think there is a wrong way to help if you donate to charities who are active in helping the people of Ukraine. I support many charities but one which has always had my heart is MSF. Medecins Sans Frontieres translates as Doctors Without Borders. When it comes to the health of others in disaster areas, war zones and the like then I think we all have a duty to do what we can to help and help those who directly help! such as MSF. With that in mind, all donations to me via Buy Me a Coffee and all the pennies generated through the ads dotted around my pages will be donated to MSF. I will make up the difference for the fees taken by PayPal and Buy Me a Coffee. That will run until further notice, no time frames and possibly until Ukraine is a free country again. Thank you for reading my blog. 

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Diabetes HCP Anonymous 1 - DSN Guest Blog

Post-Covid, the demands on HCPs in the UK have grown to unprecedented levels and Diabetes care has not escaped the turmoil. As an active member of many Diabetes circles, I have been fortunate to learn about the current situation faced by many of our hardworking HCPs within the NHS. Some of their stories have horrified me and given me a new perspective on life "on the other side of the appointment". I have offered my blog space to my HCP friends as a safe space for them to air their views anonymously. 

Welcome to the first of these Guest Blogs, written by a Diabetes Specialist Nurse.

Dad.

I love my job - I just need to get that out there before I open up to you about the current climate for people like me, working for the NHS. I work with some incredible people and the PwDs who I've met have been the most amazing, strong and stoic individuals. 

It's hard. Being a DSN right now is becoming really tough and some of us are at breaking point. The issues are complicated and come from many directions but the main one is Covid. You've probably felt the delays or a shift in your care due to the pandemic, as a patient. We understand your frustrations and we are trying our best to get through the backlogs. Many of us have been faced with very distressing issues, as really poorly people with Type 2 Diabetes are coming through to us following two years of seeing nobody. As you might imagine they need urgent care and referrals to other areas, all of which take up lots of time and resources. We're getting through things but it's going to take a while to until we see some sort of normality again.

I know that Paul has a large following of PwDs with Type 1 Diabetes and that you're all excited about the new availability of technology and the new NICE guidelines. I also know Paul to be a great champion of technology and an advocate for better access but I must offer some hard truths. Despite what you may have read, simply asking for a CGM will not result in you getting one immediately. 

Some of you are asking for Libre 3 which hasn't been released on to prescription yet, to transfer a patient to that requires the filling of a 10 page document - a very time consuming process when the demands come from hundreds of people. There is also no iPhone option for Libre 3 and no reader so it's only suitable for Android users. 

Elsewhere, I've seen requests for Dexcom 1 which has no sharing function, no predictive alerts and isn't yet available to prescribe. The Dexcom G6? That's still not happening unless the patient is hypo unaware. If you want a Dexcom and you have hypo awareness then you'll be directed to Dex 1 which is much inferior to a G6. Other options have been brought forward but there are huge question marks over quality and a lack of sharing with HCP options means the patient is left to manage their own data without our support.

Despite what you may have read on Twitter, the new guidance is a mess for us. It would've been helpful if these stumbling blocks were addressed and fixed long before the changes were announced to allow us to make changes easier. There is a push to bring these changes forward quickly, an undertone of "it's easy, NICE guidance, etc" but each device which isn't on prescription requires us to fill out 10 pages of information in a form called an IFR. There simply isn't the staff to cope with the current levels of demand much as we want to help everybody right away.

 Some of you, like Paul, have been fighting for access to pumps. The same issues are true in that area. Demand has increased because of the Looping trials and increased positive exposure through social media. Of course, to Loop you'll need a CGM and a Pump and the training. That's a lot of time and staff resources for us when we're already at breaking point. It feels like we're moved too quickly, tried to run before we can walk, and the result is going to be huge delays for patients. I'm working my socks off, I promise, because almost without exception I believe you guys deserve the very best care and technology that we can offer.

I'm sorry to have disappointed any of Paul's readers. What you read on social media, highly praised "Gods of technology" don't live up to the hype very often despite the roles they hold in regards to tech access at various orgs. If the senior HCPs won't or can't bend the rules to allow easy access then how are we mere mortals supposed to?

Thank you for reading my Guest Blog. Please leave your thoughts in the comments below.

DSN.

As you might have seen, a conflict has broken out in Ukraine as Russia has invaded that country. The scenes on TV and on social media are horrifying. What can we do? Well, I don't think there is a wrong way to help if you donate to charities who are active in helping the people of Ukraine. I support many charities but one which has always had my heart is MSF. Medecins Sans Frontieres translates as Doctors Without Borders. When it comes to the health of others in disaster areas, war zones and the like then I think we all have a duty to do what we can to help and help those who directly help! such as MSF. With that in mind, all donations to me via Buy Me a Coffee and all the pennies generated through the ads dotted around my pages will be donated to MSF. I will make up the difference for the fees taken by PayPal and Buy Me a Coffee. That will run until further notice, no time frames and possibly until Ukraine is a free country again. Thank you for reading my blog. 

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Gotta Wear Shades

I don't HAVE to wear shades but doesn't everybody look cooler while wearing sunglasses? That's me, in the photo, outside the Bellagio in Las Vegas, almost 8 years ago. This blog isn't really about sunglasses, I promise.

Firstly, huge thanks to everybody who supported my December charity blogs. They raised £90 for Diabetes charities - all the money has already been sent, take a look at my Twitter timeline for a detailed breakdown. Perhaps I'll do something like that each year because it's good to give.

I'm doin alright, gettin good grades, the future is so bright, I gotta wear shades. Do you remember that song? It still gets thrown around from time to time when things are looking promising. In the world of Type 1 Diabetes, in the UK at least, things do seem to be looking up. On a personal level, things are pretty good as well.

I'm doin alright

The numbers suggest as much. My eA1c is floating around 6.6% and my Time In Range is in the low 80% area. Numbers are just data so, that aside, I'm happy to confirm that I actually feel pretty good, too. Better levels of sleep because of fewer Diabetes related interruptions is certainly a life changer. That and no feelings of being overwhelmed by injections have certainly put a shine back into life. Those things are down to me using an insulin pump, of course and you know that because you've already read of my gushings for the last 4 months. If you want to switch to pumping then I encourage you to start the conversation with your Diabetes team. At this point, I am still refused NHS funding for pump therapy and I've taken my foot off the throat of decision makers in that regard - I'll explain why at the end of this blog, keep reading.

Gettin good grades

TIR, eA1c, Hours slept... there are probably others, too but the numbers are looking good and if T1D is judged on such things then the grades are looking pretty nice.

Future is so bright 

Possibly. A bright future involves access to all available technology to all who can benefit from it. My data shows the benefits to me but that's not enough to satisfy the current NICE criteria for pump funding. I've written about why the criteria isn't fit for purpose and is causing individuals to self harm to achieve an A1c which would make them eligible for pump therapy. That's not a route which I'm going to explore but I will keep talking about it because it's obviously very wrong and potentially very damaging to the health of people living with T1D. 

A bright future involves the scrapping of the current NICE criteria for pump funding. Good try, folks but delete that and start again. You can do better. Aaaaaaand it seems that might be happening. I await the news of NICE criteria changes, later this year. March, perhaps. Of course, if it still pushes individuals to self harm then my noise will increase and I will submit to the requests to talk about it through more public sources than my little corner of the Internet. The coming months will be very interesting indeed and I do hope the future is incredibly bright for everyone living with T1D and not just for some, for some things.

I gotta wear shades

Because, as established already, shades are cool. It's important to remain cool and calm in most situations. If you're fighting off a hypo or struggling to reduce a hyper then I've always found things seem to move more smoothly if I just take a breath and stay calm. Perhaps stress and anxiety can affect BG? Of course it does! as it can affect other areas of your life. So, rather than press harder for pump funding I am going to do nothing apart from wait. I'm going to put my faith in the decision makers to level the playing field, faith in HCPs to facilitate access to technology and look for reasons to make it happen rather than reasons to refuse and faith that the current use of a donated pump will hold out long enough for me to not be worried about the day it dies - because I'll be granted NHS pump funding and a warranty for the tech I'm using. The shades are on despite it being January, freezing cold and dark at 4pm. The shades are on because I'm cool and calm and patiently waiting for the right things to happen.

Happy New Year.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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The Diabetes Technology Revolution

Welcome, Comrades. It's another blog about Diabetes tech because you haven't been inundated with news of it through your socials. Of course you have and it's been fantastic news! If you've missed it, in short, T1Ds in England and Wales are set to be given NHS funding for CGMs and some T2Ds (on insulin) are set to be offered NHS funding for a Flash Glucose Monitor.

The gates aren't being kicked down just yet. The above seems likely to go through in the March of 2022 because the behemoth that is the NHS and NICE aren't exactly agile in directional changes. Cool, fine, okay. 

The news doesn't really impact upon me. I'm one of those lucky social media types who are offered CGMs in return for reviewing and talking about functionality. I'm delighted for my peers, especially those who don't get along with Libre because of accuracy issues, adhesives, etc. I do hope that the CGMs on offer are varied, however. Having used several in the last 4 - 5 years and having spoken to probably thousands of other users, it seems apparent that different systems work better for some than others. I don't know why that might be but I've certainly noticed some monitors aren't within my personal parameters of acceptable accuracy and comfort. Recently, how environmentally friendly these devices are have become more of an issue - I've been talking about that since the summer of 2020 so, that's nice to see and it will be fascinating to watch how the different companies react.

Type 2 Comrades on insulin, how happy are you? I really hope that this news is the start of a more level playing field for you guys and you're offered equal respect and reduced stigma because of this and future developments. 

Are we really now heading into a full on Diabetes tech revolution? I saw Libre as the first step on that ladder when I first began using it, despite it's questionable accuracy, a few years ago. And now we're here - on the verge of total CGM access, no need to be under 18 or pregnant or both. Looping trials are seemingly progressing well. Type 2s are now at the party. Perhaps there'll be a cure in 5 years!? Hahaha. Sorry.  I think we are and we're right in the middle of it. The drivers of change must be thanked for that because even if this is as far as it goes for the next 10 years it will be a huge advancement in care and undoubtedly improvement in the long term outcomes for Diabetics.

Vive la révolution!

Where next? You've read this far without me mentioning NICE pump therapy criteria. But! budgets, tax payers! but there are people who need it more than others! but this, that and the other. I'm done with buts. If I wanted buts I'd be a colorectal doctor. Where there is a problem, there is a solution. If the problem is money then the solution is to obtain more or reduce spending to balance the books. But where from!? - Read the above about "buts". I'm happy to work on that solution for a very reasonable salary. If the problem is the current NICE criteria, and it REALLY is, then revise it. Just today, I've been told of others who have purposefully let their blood glucose run high to obtain pump funding because of the NICE criteria. Let that sink in. I know that I've briefly spoken about this before but now others are openly approaching me to tell me of such occurrences. That's self harm. In the short term, you risk DKA and possibly death. In the long term, you increase your risk of Diabetes related complications. Self harm and risking awful health problems to obtain something which should reduce those horrible things happening in the first place. 

So, today I'm calling for the scrapping and revision of the NICE criteria for NHS pump funding. It is not fit for purpose. Not only is it unfair and far too stringent, it is resulting in real harm in the real world and that is shameful.

 Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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What a Site! - Diabetes Tech Worn by Everyday Diabetics

Have you noticed the Diabetes Tech ads on your TV, lately? It seems to be a marketing avenue that a few companies are exploring. I'm happy about that. It normalises the use of the technology in day to day life and reduces stigma around Diabetes. One particular ad' caught the eye of my mother, who asked "Don't you use one of those disc things for your blood sugar?" She'd seen a Libre ad' featuring a woman, swimming. The conversation led to my explanation of how the tech works and how we both wished it was available in the 1980s when I was diagnosed. 

It also led me to think about the marketing around Diabetes technology. The images, videos and individuals used. Nick Jonas might spring to mind? Perhaps a few other names, too. Of course, the famous and the achievers deserve access to Diabetes tech as much as the rest of us but perhaps it's time to celebrate the "Everyday Diabetic" a little more in such marketing. I consider myself be a Everyday Diabetic - Just a man who talks about his condition, warts and all, on various platforms. I'm lucky to have an agreement with GlucoMen, who appreciate my content and supply me with their Day CGM. I'd love to see more individuals given similar opportunities.

So, reader! Allow me to present to you some of my tech wearing friends from around the world. Beautiful souls, kind hearts and living their best lives while wearing Diabetes technology to help them manage their condition.

It seems that we're a diverse lot. Not just in the management of our condition but where we put our technology. Arms are popular! The Libre wearer in the photo at the top of this blog moves hers around:

"I was in need of a new spot, as the back of my arm needed a bit of rest (the sensors aren't too kind to my skin, especially then - I expect they have changed something with the adhesive). Besides this it tends to come loose quite easily, so it's a lot less of a hassle on the front."

That's Julie, she says "I wear my sensor on the side or to the front of my arm, because I can see it I’m more conscious of it so I don’t knock it off, when I wore it on the back of my arm I was always knocking it off especially at work and when strength training."

Jimmy likes to keep his sensor warm, "I wear my taped up sensor on the inside of my arm (it doesn't like the cold)"

Some sensors have a habit of coming loose and falling off! So putting a strap on could be a great idea, especially if you have a 3rd party add-on such as Bubble.

Hot weather (even in the UK) causes issues, too. That's why Richard tapes his in place.

The 3rd party add-ons are still a popular thing when it comes to turning Libre 1 into a CGM.

While arms are still popular this pump user prefers core sites too, noting "Here’s where my pump is currently sited. I also use my arms, back and backside."

And if you have two pieces of tech for your blood glucose? "My trial of Dexcom is about to expire so here’s one of the Dexcom and a new Libre soaking in before I activate it in 24 hours time. Both on my stomach."

How about a pump on one side and a CGM on the other? Tummy button piercing is an optional extra which might not be NHS funded. This tummy belongs to a Diabetes tech user who is proud to show off her gadgets, "If it helps others, I'll be happy. I'm not shy in showing it either, bring on the summer bikini shots"

How about a close up on a pump cannula in action? Textbook stuff!

That one probably isn't in many textbooks! But, do you know what? Sometimes rules are made to be broken and if it works for you?... "The readings were less than 0.5mmols different and frequently equal to blood glucose"

Chest is best?

Robert might agree, with this upper-chest Libre. "Pump on my arm, libre on my chest, I'm usually the other way around. I try to avoid my waist for pump as I over did it a bit!"

Anybody for legs?

"I started using my upper legs for my pump sites about two years ago! Mostly because my CGM had to be on my stomach (it is now also been approved for your arms so that's where mine is now)! I have a lot of stretch marks, so a bit part of my stomach is unusable. I have also noticed that since switching to my legs, I have not had one bent cannula, this was something that happened often when i still used my stomach for my pump infusion set."

Guys use their legs, too. Including this pump user.

A late entry comes from this patch pump user. What goes on around the front, goes on around the back.

So, there's a splattering of lovely people and their tech sites. What, me? Alright then. It seems only fair that I show you some of my tech sites from over the years.

GlucoMen Day CGM on my tummy.

Libre leg.

Dexcom arm

Thank you very to everybody who contributed to this blog. I think we could make a calendar from these photos. Imagine seeing my thigh on June 1st!? K, maybe not.  Also, for confirmation, all contributions to this blog agreed to me publishing their image and quoting their words.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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