Let The Storm Rage On

...the cold never bothered me anyway? Well, tis (almost) the season for such movies. You might have realised from the image above that this isn't a blog post about Frozen or Christmas  Instead, I'd like to talk about everyone's favourite subject; social media. Gah! I know quite a lot of you are now going to close this window, unfollow me, throw away your phone and report me to the police. I might deserve some of that! I mean, have you READ my tweets?! Jeez!

For the handful of you who remain, let's get into it. Sometimes, I "do a lot of socials" and not just for myself. From time to time, I work for others (volunteered and paid roles) alongside my own blathering. It's cool, I like the interactions and social media has opened a world of experiences for me. It's helped my health, too. My T1D is unrecognisable from what it used to be just 6 or 7 years ago. That's an incredible thing if you really consider it. It also paints the general population in a great light, especially diabetics, as they are the driving force behind my current diabetes management and stable health.

I've thanked the online diabetes community in several blog posts and posts on socials. They truly are a great bunch and if you're new to that world, embrace it and soak up all the info and support that you need. In other posts, I've issued warnings to people to be cautious online. Despite the majority of people having no agenda but to assist others and gain their own support, there will always be a minority who are looking for something else. What are those things? The list is likely long, but you can probably include; using others for profits, career progression, gratification, and self promotion. I've experienced those things and more. Perhaps you have, too. Whilst that's sad, particularly as the diabetes world is focused around health, it's not very surprising. This is the Internet, of course!

Part of the online diabetes community is GBDoc. You're probably aware of it if you stumbled upon this post via a link on one of my socials. I've had a lot of involvement in that community and, again, it's been tremendous. When I began tweeting about diabetes, I was very determined to not involve myself with any community or organisation. That probably lasted about a month! and after a year or so, I was asked to be a volunteer along with several others. Volunteers have come and gone in the last 5 years. They had their reasons and their departures didn't affect me. We remained friends, largely, and some are still kicking around on socials today.

And now it's my turn to depart.

I've simply lost the motivation to continue to freely give my time to GBDoc. There are reasons for that and there are absolutely a select group of people who are behind those reasons. To detail each would result in a very long blog post and it would probably create an online inferno. My own personal attacks have included accusations of stigmatising others, subversive posts that target others, discriminating against others who are not British, not fact-checking things I retweet (because I'm CNN, obviously)... and I'm going to stop there because even as I type those things, and even after some time has passed, I feel affected by those accusations and the shocking levels of entitlement to tell me how I run my own personal account. I'm not perfect. Indeed, there have been times when I've corrected or removed something I knew to be wrong or even something that could be misinterpreted. Over the years, I've listened to others and made apologies for my own errors and, unnecessarily, the misinterpretations of others. Those instances were on Twitter (now X) which has never really been the easiest place to read tone from or gain much from in the way of great detail - unless you have a verified account and you love writing essays, of course!

I'm not looking for sympathy. However, I feel sorry for my friend, Jules. She's well known for living with some serious conditions which are exacerbated by stress. To listen to her breaking and tearful about the whole saga was very tough. The non-apology and the carry-on-regardless nature of those involved was bewildering. "Bewildering" was the best I could muster after deleting various expletives. Of course, you should form your own judgements if you wish, but from someone "on the inside" I know the hurtful remarks made about GBDoc volunteers (managed by Jules) were so far removed from reality. I hope that she'll come back one day. I'm sure the community will continue to thrive in whatever guise. 

There is much more I could add to this post. I may follow up at a later date. There will, of course, be more blog posts on other subjects in the days, weeks and months to come. If you're from GBDoc, it's been lovely to volunteer for you since 2018. Stay well. 

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The Blue Tick

It's been a couple of months since I took "the plunge" to verify my Twitter account. Of course, that's now a verified X account following the rebranding at Musk Inc. It has raised a few questions and conversations, primarily "why?!" especially as the recent changes at this platform have caused many to move to other areas of the Internet for their socials. I thought that I'd clear things up with a blog post, instead of writing a really long tweet... xeet? Whatever.

In today's digital age, social media platforms have become powerful tools for advocacy and awareness campaigns. Twitter, with its extensive reach and real-time engagement, stands out as a platform that can significantly amplify the voice of advocates. For individuals advocating for diabetes awareness, being verified on Twitter holds immense importance. Twitter verification is crucial for diabetes advocates, especially those (like me) who are not professional advocates. Below, I'll look at how it enhances credibility, increases visibility, and facilitates meaningful connections within the diabetes community.

• Credibility Amplification: Whether we like it or not, for many, verification on Twitter symbolises authenticity and credibility. For diabetes advocates, whose primary goal is to provide accurate information and create awareness, being verified adds an extra layer of trust for their followers. Verified accounts are perceived as authoritative sources of information, allowing advocates to spread accurate details about diabetes management, treatment options, and lifestyle changes with more impact.

• Enhanced Visibility: Verified accounts are more likely to appear at the top of search results and in relevant conversations. For diabetes advocates, this visibility boost is essential in ensuring their messages reach a broader audience. With the ever-increasing volume of content on social media, standing out from the noise is crucial. Verification ensures that the important messages of diabetes advocates are not lost in the crowd, enabling them to effectively reach people who need accurate information about the condition.

• Access to Features: Twitter verification comes with access to advanced features, such as analytics and insights into tweet performance. This data can be incredibly valuable for diabetes advocates, as it helps them understand what type of content resonates most with their audience. This information can be used to tailor their advocacy efforts, refine their messaging, and optimise their engagement strategies.

• Collaboration Opportunities: Verified accounts are more likely to be approached for collaborations, partnerships, and joint initiatives. For diabetes advocates, this means increased opportunities to collaborate with medical professionals, researchers, organisations, and other "influencers" in the healthcare space. Collaborations can lead to more comprehensive and impactful advocacy campaigns, furthering the cause of diabetes awareness.

• Building a Stronger Community: Verification status fosters a sense of community among advocates, creating a network of credible voices in the diabetes space. Verified advocates can connect more easily with each other, sharing insights, experiences, and strategies. This sense of camaraderie strengthens the overall impact of their advocacy efforts and encourages the exchange of knowledge within the diabetes community.

• Countering Misinformation: This is one of the major pulls for me to be verified. Diabetes advocates often find themselves combating misinformation and myths about the condition. A verified status on Twitter empowers advocates to debunk false information with authority and credibility. As misinformation spreads easily on social media, having verified advocates actively participating in these discussions is essential for steering the conversation in the right direction.

In a world where social media has become an integral part of advocacy, Twitter verification holds undeniable significance for diabetes advocates. The benefits range from amplifying credibility and visibility to enabling collaboration and providing access to valuable insights. By becoming verified, diabetes advocates can leverage their status to create a more informed, connected, and empowered diabetes community. As the digital landscape continues to evolve, being verified on Twitter is not just a badge of honour; it's a tool that can drive meaningful change and make a lasting impact on diabetes awareness.

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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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Combating Stigma in Diabetes Online Content

In today's digital world, the internet has become a significant source of information and support for individuals with chronic conditions such as diabetes. However, despite its many advantages, the online sphere is not immune to the perpetuation of stigma and misinformation surrounding the condition. You may have read a lot about stigma via your social media platforms of late. I apologise if my own content has been focused on that subject. However, I do believe it is a hugely important issue and one which can be addressed within the general population. I understand that to many of you stigma is not the most exciting subject to read about. Indeed, some of you may have never experienced stigmatising content. Stick with me, have a read, it will only take a few minutes.

So, we know that diabetes is a chronic condition that affects millions of people worldwide. It is characterised by the body's inability to properly regulate blood sugar levels. Unfortunately, diabetes is often associated with stereotypes, misconceptions, and blame. Stigma arises from these preconceived notions and societal attitudes, resulting in discrimination, shame, and psychological distress for those living with diabetes.

The internet has revolutionised the way we access and share information. It offers a wealth of resources and online communities, such as #GBDoc, that can be immensely beneficial for individuals with diabetes. However, the online sphere is also a breeding ground for stigma and misinformation. Many platforms lack proper oversight, allowing harmful content to spread unchecked. As a consequence, diabetics often face an uphill battle in navigating the online landscape, leading to increased anxiety, self-stigmatisation, and poor mental health.

Stigmatising content can have severe consequences for individuals with diabetes. It not only perpetuates harmful stereotypes but also hinders our ability to manage the condition effectively. Stigma may discourage individuals from seeking necessary medical care, adhering to treatment plans, or even disclosing their condition to others. Consequently, this can lead to poor glycemic control, increased complications, and a diminished quality of life.

To combat stigma effectively, it is crucial to empower individuals with diabetes through education and awareness. Creating and promoting online content that accurately represents the realities of living with diabetes can play a pivotal role in challenging misconceptions and dispelling stereotypes. At #GBDoc, we recently launched the #StopTheStigma campaign to do precisely that. By providing evidence-based information, sharing personal experiences, and embracing empathy towards others, we can reshape the narrative around diabetes and create a more inclusive online environment.

Online communities such as GBDoc can serve as a lifeline for individuals with diabetes, offering support, validation, and a sense of belonging. These communities should prioritise the creation of safe spaces that are free from stigma and judgement. As a volunteer, I work hard to ensure everybody feels safe to engage in and express themselves in the communities that I am a part of. If you notice or experience otherwise, just let me know.

Healthcare professionals CAN play a crucial role in combating stigma surrounding diabetes. By staying updated on the latest research, guidelines, and treatments, they can provide accurate information to their patients and the general public. Sadly, there are some HCPs with a different agenda. I strongly encourage diabetics of any type to avoid engaging with or acknowledging HCPs who are promoting diets or lifestyles via a subscription based service. There are a few of those guys kicking around, even in the UK!

Additionally, healthcare professionals can actively engage with online communities, offering expert advice, clarifying misconceptions, and addressing concerns. By bridging the gap between medical knowledge and the online sphere, healthcare professionals can become allies in the fight against diabetes stigma.

Despite it being 2023 and despite many words of advice and correction, stigma surrounding diabetes persists in online content today, creating barriers for individuals seeking support and information. However, by recognising the impact of stigma and actively working to combat it, we can create a more inclusive and supportive online environment for individuals with diabetes. Through education, empathy, and the promotion of accurate information, we can break down barriers, empower those affected by diabetes, and contribute to everyone's overall well-being.

I'd like to ask you all to share your experiences of stigma on your social media accounts. If you can, post that content where people could benefit from learning about stigma (where people without diabetes might read it) and use the hashtag #StopTheStigma. Raising awareness has the greatest impact among the unaware.

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Diabetes Mentor

 

I mentioned Diabetes Mentoring on Twitter, two days ago. I had no real intentions of discussing it let alone to write a blog post about it but here we are. I wrote about it in passing as I tweeted what was an unusually busy few days of Diabetes related things involving focus groups, podcasts and commercial interests. Then, yesterday, I took a video call from somebody I am mentoring and, as is my want, I tweeted what was a positive experience for me. Again, no real intentions to discuss just an outlet for some positiveness which can be rare for people managing Diabetes. The response has been very encouraging!

Most of my tweets get a few likes and a few comments and that's cool. The mentoring tweet appeared to get more than average engagement, with a couple reaching out to me in direct messages to ask how they can help. Amazing! So, let's get into how this began and where it might go...

...I try to be an open sort of fella on social media. If you tweet me then I'll try to at least acknowledge it or reply to you. If you direct message me then I'll nearly always reply. Why not? social media is about engagement, for me and if you talk to everyone then you can form better, rounded, views of your preferred subjects, for me, mostly Diabetes and mostly T1D. Because of my openness, I've been approached for help and guidance on many Diabetes related issues and I'm very happy to try to help or signpost to someone else who could. Recently, I suggested to one person that it might be better to talk about their issues via a phone call or a video call. That conversation moved to the suggestion of a more frequent "catch up" with each other and so began a mentorship which has progressed well to date. 

Of course, I am only one person and there are some who might welcome a mentor but not me! I get it, I won't take offence at that, so where can that be addressed? It seems apparent that such a thing is needed and if I take into account the interest expressed in helping by others then there is no shortage of potential mentors. 

Safety must be a high priority in such ventures. In my 5 years of Diabetes online engagement, I've seen evidence of horrendous things done and said by individuals who were seen as role models, respected advocates and to this day still hold positions of power and influence within Diabetes organisations. Scary, huh? So, it's vital to never put a single person at risk of exposure to individuals who have nefarious motives. 

Some discussions have taken place within the #GBDoc community already. However, that community (in which I'm very active)  has seen some big changes in the last year and things are still in the process of settling down. A new and potentially large step in the direction of peer supporting will likely take some time and a lot of energy. Still, that would seem the best avenue to direct individuals needing one on one support and potential mentors, while offering a safe environment for all concerned. 

Potential helpers/mentors, I have noted your names and I will keep you up to speed on developments. Please be patient and remember that we're all volunteers within #GBDoc. If you're interested in helping then please let me know.

Do you need support? Then do feel free to send me a direct message on Twitter or you can email me - daddiabetic@gmail.com I can't offer support to everybody but I will try to direct you to someone who can help you if I can't. Obviously, I don't offer medical advice or counselling - If you do need those things then I will direct you to the right places.

That's it for today. A short blog that was too long for a tweet and I hope it sheds some light on that particular subject. Fire any questions at me should you have any. Mentoring is a feel good thing to do. Do you know what else is a feel good thing to do? Helping those who are literally fighting for their lives in war zones such as Ukraine...

...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+

If you're a frequent user of social media platforms, and your use of such platforms is based around Diabetes, then you're probably well versed in the terminology and acronyms which surround our condition.

It can be a confusing place for the newbie. There are docs everywhere but they're not medically qualified. T1D, T2D, LADA, MDI, BG, TBR, TIR, HbA1c... Diaversery, Diabuddy, Diabestie... My own accounts are littered with a bewildering array of references to Banting Juice and feeling Hypo Twatted and all under the influence of caffeine.

I love it all. If you can't work out these little sayings and acronyms then it's perfectly fine to ask. Put a hashtag at the front of those words and you might get a bigger audience. Twitter, my favourite platform, has a character limit so it makes sense to use such acronyms when tweeting. So far, I've resisted the urge to use BJ when discussing Banting Juice (insulin). There are puerile minds on the Internet. Not mine, obvs!

That brings me along to Diabetes+ It's not a term that I've used before but it's one that springs to my mind when I notice others discussing a positive (+) aspect of life in relation to their Diabetes. How can there be a positive to Diabetes!? You exclaim, finger hovering over the 'Unfollow Diabetic Dad' button. Positives aren't to be found within having the condition, at least not that I've found, but within the new experiences and relationships that the condition allows.

You don't need to look far for a new positive from Diabetes. It could be that your management of the condition is improved because of simply reading the social media messages of others, absorbing information and keeping up to date with the latest happenings on Planet D. That alone is a superb thing. If that's your Diabetes+ then I'm really pleased for you. My personal Diabetes+ goes much, much further.

Reading and engaging with peers has been a huge positive for me, too. Beyond that I've discovered, to my surprise, that I quite like people and meeting them, getting to know them and in some cases becoming good friends with them. It's always good to have something in common, right? misery loves company or something. I'm kidding! I've never had a miserable experience when meeting a fellow diabetic or a person who works within Diabetes, business or healthcare. I've never experienced this before. At various points in my life, I've met with many people on a social level; Work colleagues, friends dating back to school days, football friends, poker player friends, the list is long and within each "category" there were a good number of people who left me feeling negative about my encounters with them. Personalities and opinions do clash, of course but it appears to happen to a much lesser extent within the peer support and friendship circles of Diabetes. I wonder if that's because we have an understanding of the struggle which we might not with the organic insulin growers of the world?

Prior to fully engaging with my Diabetes, I was somewhat of a recluse. I certainly had and still have, to a lesser degree now, social anxiety. That lesser degree has reduced massively and continues to do so following each "meet up" or conference. It's like being fed a little more confidence each time.

I know, I talk about Diabetes a lot. I do that YouTube thing, I'm all up in your grill about Diabetes whenever you try to get a minutes peace on Twitter, I've written things (you're reading one now) I've been on the radio and I've many irons in many fires. That doesn't mean that social anxiety, in the flesh, isn't a very real thing. 

Prior to the Covid-19 pandemic, my confidence levels were very high when it came to meeting others. Now we've been locked away for more than a year, I would be a liar to suggest that I feel just as I did at the beginning of 2020. There has been a step back but I'm determined to rediscover that Diabetes+ again by meeting more people who have Diabetes, when it becomes safe to do so. And we're nearly there! I'm not far away from my second dose of the Covid vaccine and a few weeks after that? I'll be as protected as I can be from that bastard of a disease.

Baby steps, though. The plan is to meet a couple of other friends in a park, distance, drink coffee (tea if you prefer, Carolyn) and chat. As the UK opens up, I hope more occasions like that will happen and my Diabetes+ continues to grow for many years to come.

I hope this blog has been a tale of positivity. Do you have a Diabetes+ ? Go ahead and tell me about it in the comments box below or just send me a tweet.

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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Diabetic Superstar

 There are two words in the title of this blog. I'm fine with one, less fine with the other.

"Oh, no! He's going to talk about language matters!"

Maaaaaaybe. Let's see.

Of course, I'm fine with "Diabetic" and always have been. It's a part of my social media username and it's written in the tattoo on my arm. You might say that I'm relaxed about being referred to as a Diabetic. I know some are not and that's equally fine with me. 

My grumble comes over the word "Superstar". It's not only Superstar, it might be "Up and coming rising star" or perhaps "Shining star". Stars get a lot of copy when it comes to exaggerated expressions of praise, don't you think? And praise is good! Praise is right. Praise works. Individuals who do great things undoubtedly deserve praise.

Where the line is between expressing thanks & offering praise and creating a celebrity is what worries me. Celebrity offers many trappings which are hard to resist. I won't use my blog to name-drop but, in a previous life, I've known a few good people, friendly people to become wealthy and famous and subsequently become a very different person. That's a shame but I understand how the voice of an ego can change a person.

So, you're wondering how that might be related to diabetes and who I'm talking about! Firstly, I'm not interested in cryptic messages, subtweets or carry overs from the schoolyard. That's not my domain. I'm blunt and direct much to my cost, at times. I'm not referring to specific individuals here. I'm referring to what appears to be a growing trend of using such superlatives, particularly when aimed towards advocates in the diabetes community.

I've seen such terms directed towards HCPs on Twitter. They deflect it superbly! Often responding with "I'm just doing my job" or similar yet the majority know that's not true and many HCPs go above and beyond the calling of their salaries. They deserve praise but I suspect/hope they'll agree, they're not celebrities and feel uncomfortable to be slapped with the "star" label.

Advocates seem less worried and that worries me.

I think it's impossible for any advocate to truly represent the best wishes of such a huge number of people, such as those living with diabetes. Even a specific type of diabetes, such as Type 1 has almost half a million people trying to manage the condition in the UK alone. The whole subject of advocacy leaves me uneasy but when any one advocate is held on a pedestal, I feel even more uneasy about inflated egos, self appointed voices of authority, individuals who might speak for others, speaking for an entire community without engaging with any more than a tiny percentage of their peers. 

A shift in diabetes advocacy would be a great thing. I think many have heard me and others suggesting this and are acting upon it. A shift in how we praise advocates might also need to be reconsidered. While language matters in regards to being respectful, I think it also matters in the avoidance of creating a celebrity culture, a culture which cannot be good for communities of people living with diabetes. Within the #DOC and #GBDoc it only recently came to light that advocacy resulted in the abuse and sexual harassment of women, as "fame" and status was used to coerce and manipulate members of those communities.

What do you think? Are we in danger of creating celebrities from the world of diabetes advocacy and do we need to be more careful about how we praise those in that arena?

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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Freestyle Libre 2 - In Review

 

It feels like it's been a long time coming for UK based people living with Type 1 Diabetes. The Freestyle Libre 2, the sequel to the box office smash original, is now here and is available to eligible diabetics on the NHS.

I don't really do reviews. If you've seen my vlog then you'll probably be aware that I focus my attention on talking to other people living with diabetes, sprinkled with the odd rant about whatever issue is burning in my belly at the time. So, I'm going to keep this "plain English" and try to focus on areas which I think are important to me. If you're especially interested in an area that I don't touch upon then do leave a comment below or get in touch via the usual channels.

What's in the box?

Does it look familiar? If you've used the original Libre then it probably will! It's exactly the same thing. All your old favourites are here; Insertor, applicator, 2 handy alcohol wipes and an instruction manual which you've never read. There isn't anything noticeably new. Even the outer packaging looks the same apart from a number 2.

Not that the packaging really matters, aside from the waste (I'll get on to that soon). You're not really here for that. You're here because it's new and you've heard it works "like a proper CGM". It's true, it does. 

Users of Libre 1 can turn their sensors into a CGM via a nifty piece of kit called a Bubble or a Miao Miao. Essentially, both are Bluetooth devices that can sit on the top of your Libre sensor, taking in all that lovely data. That can then be sent directly to your phone and an app such as Diabox. No need for scans! Cool! Well, yes apart from the need to purchase a third party piece of hardware and turn a reasonably flat piece of tech, in the Libre sensor, into quite a bulky lump on your arm (or wherever you choose to wear yours). 

"Hold my pint!" exclaimed the boffins at Abbott and they set to work to remove the need for a third party device, uglying up their little discs of loveliness. The result is Libre 2 and it works just like Libre 1 did with Bubble or Miao Miao.

Accuracy!? Tell me about the accuracy!

No blinding with science, here. If you want to hear about MARD and the likes then those figures are freely available on other good web sites, and some bad ones. For me, so far, I think it's as good if not better than Libre 1. I've tested it against my most trusted blood glucose monitor at different times of the day, when high and when low and it's pretty close, sometimes exact. Day 1 was a little "out" on the numbers but I was expecting that after reading about similar stories on social media. It did settle down after around 6 hours.

Diabox? Huh?

You're going to need it to take the data automatically, like a CGM. The app can be difficult to find but do ask for help on Twitter via #GBDoc if you're struggling or visit this tweet by my friend Louise. When it's working it'll look a little something like the image above. Your numbers might be different (better). The app allows you to customise alerts and turn off the ones that you don't want, or find the most irritating.

There may be other ways of turning Libre 2 into a CGM. You may want to explain those to me! Feel free by using the comments box below. I've heard of some sort of patches for the LibreLink app but I couldn't locate the info and I'm impatient to use new tech.

What about LibreLink?

You're going to need to keep that. If you're NHS funded then you're very likely to be sending your data back to your clinic via this app. So! Remember to scan! Or your clinicians will think you've given up or have departed this world. The sensors keep 8 hours of data so, how often you scan is up to you. I try to have a flash every hour or so. It also serves as reassurance that your Diabox numbers are tallying up with the scanned sensor numbers.

The leftovers?

I'm not mad, I'm just disappointed. Having used a different CGM recently, by a company who are taking packaging and hardware waste very seriously, it's a real blow to be faced with an "updated" version of this product and the waste is still the same as the original.

There it all is, including a previously worn sensor - for the sharps bin.

I know Libre 3 is on the way and I have high hopes for improvements in every dept, especially in left over waste. Don't let the planet down, Abbott! 

Should I get one?

If you're NHS funding eligible, yes! I know some of you are happily finger pricking, some don't like the idea of wearable tech on their bodies, 24/7, some might feel overwhelmed by the process of getting one and the new avalanche of data. I get all that. Here's what I've discovered:

- Less finger pricking means less burden. Don't buy into the idea that you'll never finger prick again. You will need to when you're having a hypo or need to check that your sensor is working accurately.

- You don't notice it. Some sensors sting for a while but pretty soon you'll wonder if it's still on.

- You're in control. Look at your data as often as you feel comfortable. If you're used to finger pricking 8 times per day then you are allowed to check your sensor 8 timer per day.

That's all I have to say. I hope you've found that quick review useful. Again, if you would like to know specifics then please get in touch.