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. 

BUY DIABETIC DAD (MSF) A COFFEE HERE

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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. 

BUY DIABETIC DAD (MSF) A COFFEE HERE

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The Cure

 

I should publish this blog post on a Friday because, you know?! Friday I'm In Love and all that. Fortunately, this post isn't about 80's bringers of cheer, The Cure. No, we're talking T1D cures because, like all good Diabetes bloggers, I'm a topical content whore.

You've probably noticed some of the chatter following the £50 million donation by The Steve Morgan Foundation jointly to DUK and JDRF (UK). If you missed it then it looked something like this:

Steve & family spoke about the donation on BBC Breakfast alongside charity reps and social media got giddy. Rightly so and, do you know what?! it was lovely to see some positive words and hope from the online community. Not that we're a moody bunch but, in general, we do usually have more to complain about than celebrate.

So, it's £50 mill over 5 years. "5 years" ? Sounds familiar but this time there is a firm sense of hope. I truly hope this is the tipping point, the seed, which sprouts a cure in the years to come. It is a hugely generous gesture and as a Diabetic who is nearing middle-age, I will be delighted for those with less miles on the clock than I, as well as the lifting of burden for myself, should the news break.

£50 million, eh?! You could nearly buy a footballer for that! It does beg the question, has a lump of filthy lucre been the issue since Day 1 of research beginning? I know that charities are always asking for funds but has one big hit been holding everything back? That would seem like a terrible shame for those who have lived with T1 for many years, those who are no longer with us because of the condition and those, like me, who have been touched by complication's frosty grip. Perhaps that's something for a later date. Until then, boffins get boffining! Bring us good news and if it takes 5 years then I'll get Steve Morgan's face tattooed on my back.

Speaking of tattoos! I'm screwed. You've seen the one on my arm, right? I show it off at every opportunity because I think it looks cool and I'm proud of overcoming my hiding of the condition and letting it dictate my life to me. Now it belongs to me, that's what the tattoo shows. And it's kinda useful if I'm unconscious and the medics spot it. What do I do with that? I'd probably add "Former" above it and "See back for details" whereupon you'd find Steve's face. Yes! I think that's a plan.

Back to curing. A cure is a subject which I've avoided for a long time. The trash in newspapers and on the Internet has left a sour taste in my mouth when it comes to that discussion, yet it's a valid subject. You might argue that it should be the primary subject until it's found as it would eliminate everything else we deal with in relation to T1D, complications from living with it aside. As I sit and smash my fingers into the keyboard for this blog, I find myself drifting off for a moment to imagine not having Type 1 Diabetes... it's weird! How do you freaky non-diabetics do it? Eating without bolusing? I mean... WTAF! I don't know if I could do that, man ;-)

I guess that now we wait. I'm closing in on 4 decades of waiting. Some of you far more, some of you very recently began marking time for a cure. I encourage all of you, no matter where you are on your T1 journey, to never give up hope on a cure. Until then, push for what you need! CGMs, pumps, insulin, appointments in the flesh, etc. Keep those HCPs busy because if a cure comes they're going to miss us.

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. 

BUY DIABETIC DAD (MSF) A COFFEE HERE

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BUY DIABETIC DAD (MSF) A COFFEE THROUGH PAYPAL 

As A Man...

...talking about Diabetes and everything related to it has become easier for me, since embracing the condition, but it's not easy and after checking some stats I'm pretty sure that I'm not in the minority.

Before we get into full-swing, thank you very much if you've donated a coffee or been generous in your tapping of ads on my blog and vlog. As you might know, all the funds generated from that are donated to MSF - who do incredible work in places like Ukraine. See the bottom of this blog post for how you can help.

That's my beardy mouth, above. It's the end of the Easter weekend and I've adopted a relaxed approach to shaving. It was also an easy way to represent the mouth of a man, what with me being male and owning a mouth. Let's not focus too much on the photo! Instead, I've been considering how to word a blog post in regards to men's Diabetes - specifically how we're largely crap at talking about it.

What comes with a moderately popular social media account is the ability to analyse stats on a moderately accurate level. The bigger the number, the more accurate the data and all that so, moderate is probably about right when it comes to my socials. Cool, well... I think so! I know some aren't interested in numbers and their own voice is what is most important when it comes to Tweets and the like. I think numbers, analytics, offer a great insight into what's going on, what people are interested in, maybe even what's going wrong.

I've long suspected that my engagement on Twitter has been tilted towards women. I've never been entirely comfortable with that as there are predatory men who may have a similar tilt. I've spoken about it and openly questioned why male to male engagement in regards to Diabetes is less common - for me, at least! I certainly don't go out of my way to avoid men or to tweet/post replies to females more than males. Yet, my engagement is weighted towards women. I know that after checking the analytics of various involvements and by manually going through my own data since the turn of 2022. The figures? 68% of my engagement is with women. Yet, I know that my socials in regards to follows and friends are split very evenly - almost 50/50 as best as I can tell, sex isn't always apparent after all.

Mrs Dad has quipped; "It's because you're funny and charming and they all love you". I disagree, I'm not that funny. 

More seriously, others have noted that women are more open in regards to their health and talking about it, and that a man being "as open as they are" feels safe. That may be true, at least in part, women do seem to be happy to talk about their Diabetes with anybody. If I'm as open as the women within the Diabetes communities is debatable. Personally, I think not.

So, that's me and I'm not happy with that situation. I'm very much about equality, true equality, the lifting up of the down-trodden but not the knocking down of those on a higher perch - We should all be on that lofty footing. With that in mind, I've decided to make a bigger effort in finding and talking to more men within the online communities, to encourage their engagement and to lift them up to the high standards set by women. Why? Because talking about my Diabetes has brought huge improvements into my life, it has allowed me to learn from others, to form friendships, to have a large peer support network inside my phone which means I can ask for an answer to any Diabetes question and feel confident of being given it. Why wouldn't you want that in your life, men? 

Is it because you fear looking weak? Do you somehow feel less of a man, less in control, less attractive by opening up about your health when it's troubling you? That nonsense is what has put many of us in the ground too soon, for... forever? And now we have the Internet! You can be anonymous, pretty much and post a tweet without any fear. Or you can go a step further, grab a hold of your balls, tell the world who you are and what your issues are. Own it and be the inspiration for the next generation to talk openly about their health. 

I'm not ending this post with the standard "My DMs are open". That's fine if that's your thing but it'll change nothing. Seriously, how many of you have tweeted such a thing and been inundated with messages? Change comes through being active. So, if you are active on socials and notice an ignored person (male or otherwise, probably male) then reach out to them and start a conversation. You could help with something which is really simple for you but result in a dramatic improvement in their well being. Sometimes, a person just needs to know someone is listening. It can be that easy.

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. 

BUY DIABETIC DAD (MSF) A COFFEE HERE

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BUY DIABETIC DAD (MSF) A COFFEE THROUGH PAYPAL 

The Diabetic's New Clothes

 

Doing a lot of great work for charidee, mate. Well, I'm trying! I've volunteered and raised funds for various charities for a good chunk of my life, not all Diabetes related! Some simply because I felt touched by the cause, others because the cause came very close to home. In relation to Diabetes charities, it's only the last 4 or 5 years - coinciding with my social media presence - where I've started to help out in that area. 

It started a few years ago with a Stoptober fund raisers for DUK. I gave up alcohol for the month, typically a 31 day month! Why I didn't choose a non-leap-year February? I do not know. That thirsty month raised over £300 and it felt good to give something back, almost as good as that first pint on November 1st.

Without directly contributing money, I've done a few things for JDRF and still do with an involvement on their Insight panel. At the tail end of 2021, I hosted the T1 Today quiz as a part of their conference and helping out the smaller charities is equally as important as being in bed with the bigger ones, in my view, so that felt like a really nice cause to give my time and energy to.

You might remember my December 2021 blogs. All the Buy Me A Coffees from those posts were donated to three different charities, inc one which specifically helps youngsters with Diabetes in South Asia because Diabetes has no borders, why should we?

2022 arrived and so did the Russian invasion of Ukraine. Social media was ablaze with ways to help which was, and still is, an amazing sight. I decided to donate every penny from this blog to MSF to try to do what I can to help the people of Ukraine and the HCPs who are working there in unimaginable circumstances. To date we have raised over £70 and you can help with that by scrolling down to the last paragraph in this blog.

Spring... sprung? in the UK a couple of weeks ago and as the sun shone I started looking for a few new T-shirts and tops to wear in the warmer weather. Some fun slogan-laden Tees found their way into my online basket and then it occurred to me that a T-shirt or more generalised apparel store might be a fun way of raising funds for another charity. In 2018, I sold some Diabadass clothing and towards the end of that little venture I donated the profits from each sale to a couple of Diabetes charities. Why not everything from Day 1, this time?

The problem with selling apparel is everything! Order handling and processing, dispatch, losses, returns, refunds, cancellations, yada yada yada. Online retail is work, trust me. Instead of handling all those processes on my own I decided to go the semi-affiliate route and use Teemill. Teemill are very environment conscious and will handle everything apart from the design and slogans. Slogans?! I have slogans! and so was born:

Diabetic Dad's Diabetes Clothes Store

Catchy name, right? I could never open a bricks and mortar store because it would need to be 400ft long to accommodate the signage.

Charidee? Oh yes! Well, each order generates a small profit. The tote bags make around 80p, coloured T-shirts around £2 and white ones around £3. Teemill send those funds after 30 days have passed to allow for returns and cancellations, seems reasonable. However, sending funds to a charity every day from Day 30 onwards is going to get difficult to keep track of. Instead, I'm going to send one lump sum payment every 90 days to a Diabetes related charity. That should allow ample time for sales to be generated and funds to be transferred. A screenshot of the donation and amount will be publicised for transparency. 

What do I gain from this? I'm not paid by any charities. My reward has already been delivered to me through the help, support and friendship of the Diabetes community. I try to give that back by supporting the GBDoc community accounts and by offering mentoring to others who request it. Perhaps the charitable things will help others who I will never meet, I hope so, and that provides me with enough reward in my heart.

All that said I MUST mention that donating to charities, buying me coffees, ordering incredibly funny and fashionable T-shirts and the like should only happen if it's affordable to you. Personally, I think it's pretty horrible to pressure anybody into a financial contribution to any charity. Do what's right for you without fear of judgement.

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. 

BUY DIABETIC DAD (MSF) A COFFEE HERE

Prefer PayPal?

BUY DIABETIC DAD (MSF) A COFFEE THROUGH PAYPAL 

TAD 2022 - Talking About Diabetes Conference

The weekend of March 19th saw the 5th TAD (Talking About Diabetes) annual conference back in London. Following Covid-19 restrictions and subsequent postponements, this conference was a couple of years delayed but it was certainly worth the wait.

The Royal College of Physicians building played host to the crowds of T1D folk and what a lovely turn out it was! I was immediately struck by the diversity of the attendees. Do you remember me calling out for more diversity in advocacy? Yes! Great start and this continued as the event began with speakers from different backgrounds, ages, accents, ethnicity and disabilities having their turns on the mic.

I was seated in what became known as The Royal Box. This area was actually for wheelchair users so it was nice to see good accessibility on offer but, while attending with actual Diabetes royalty - HRH Jules, it seemed correct to recognise this area as Regal. The view was pretty good, as you can see from the photo at the top of the page and the company was excellent.

(from left to right; Me, Jules, Kate, Beth & Anita)

Five pretty happy faces, considering the early starts to catch various trains from various stations. Caffeine is a marvellous thing.

So, Partha got things underway with a short intro before handing things over to Natalie India Balmain. I've been social media buddies with Natalie for years so, it was lovely to see her confidently compere the event as well as offer snippets of her own story in-between the talks. Oh! and her red jumpsuit was absolutely amazing.

Our speakers took their turns and I found myself choked up at many points throughout the day, beginning with George who attended with his dad. Dad got through his talk admirably, despite relaying the moment when he thought he was going to lose George, soon after T1D diagnosis. I think something landed in my eyes at that point.

Jasmine was next. She told her story and how she uses Instagram for her Diabetes advocacy. Inspiring stuff! 

Before lunch, Dan Newman took to the stage. Dan and I have some similar experiences in regards to our early T1D lives and eye complications, further down the line. Keep checking Dan's socials for his podcast with me - we spoke for ages! I reckon he'll need to edit a lot! He is such a cool and calm presenter and offers his story in such a brilliantly relatable fashion. 

As stomachs began to rumble, it was wonderful to see James Norton back on the stage as he took questions and had a brief chat with Partha about Bond, hair, technology, Marvel and more. One question which especially caught my interest came after James spoke about the possibility of moving to an insulin pump - he injects up to 15 times per day and appeared to be toying with the idea of switching to a pump. The question/comment rightfully noted that pump access wasn't a given, right now and that it's a battle for many to access that technology. James agreed, Partha agreed and noted that it's being worked on and that most attendees are a tech using bunch which can give a skewed view of just how much insulin pumps are used (circa. 20% of T1Ds are pumping). I was pleased to hear him say that it's being worked on, I'm sure that once the looping trial data hits the media and CGMs are readily available to all, the demand for pumps will increase dramatically.

Then it was time for lunch! Hurray! SOME of you might remember me passing an observation on the lunch of TAD 2019. This was better! lots better! The picnic boxes were especially good and there appeared to be a good variety of choices dotted around the room. A happy Diabetic is a well fed Diabetic!

The afternoon session began with Ros, telling us about the changes in her life with Diabetes and noting how the community had influenced things for the better. I assumed Ros had done this sort of thing before because she was excellent. Later on, I spoke with her in a pub and she confirmed it was her first time. What?! I was a shambles after talking to 20 people, Ros clearly has an aptitude for public speaking.

Next up, we heard from Sophie who is a mind-bogglingly talented musician. She captivated all with two pieces of music played on the cello with a talk about her story in between.

Just as I was regaining some emotional composure, the Tadpoles came out and displayed their artwork to us all. Each had drawn a tremendous picture of their superhero and told us about their superpowers. They were so confident! and so happy to relate diabetes through their pictures, with pumps on display for some of the heroes.

Those kids are my heroes and as adults we must, must, must! do all we can to give them the best life with their T1D. I hope that when they're my age, they won't need to think about Diabetes, that it's a fading memory and that a lot of funny looking adults gave them a huge round of applause once, when they were young.

The Tadpoles

Phew! What a day! I loved every second of it and I encourage you to attend a TAD event in future if you're lucky enough to get a ticket.

Of course, after a such a day and with the sun shining you'll need to hydrate and where better than a pub? A large group headed to The Green Man pub for the remainder of the day and good chunk of the evening. Many stories were exchanged, hypos a-plenty began, photos happened... it was your standard Diabetes get together, really. As usual, at such get togethers, it was lovely to talk to old friends and make some new ones! 

Type 1 Diabetes is a prick, a bully, a gaslighter and it spends 24/7 trying to hurt us or kill us. I think that because of everything we go through, how we live and the shared experiences, the bond between many of us is very strong. I believe that the friendships made through our shared condition will last a lifetime and I'm so grateful and happy about that. I'll never be happy to be a Type 1 Diabetic but the good things that we create because of it sends a middle finger it's way and a bucket load of joy our way.

Hydration

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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WHO Are You?

Do you remember reading a blog post of mine from a little while ago titled; Hearing Voices? It's one of the most popular posts that I've tapped out and still gets many visits, to this day. I won't link to it - I think if you're interested then just scan down my blog posts list and take a look however, if you're not that interested then in short, it basically promotes the idea that we need to hear from a diverse range of people when it comes to Diabetes advocacy. A good idea, I think and I stand by it in 2022.

And in 2022, I was delighted to be given the chance to attend The World Health Organisation (WHO) Global Diabetes Compact to hear from others and offer my own views on Diabetes Lived Experience. It was a two day virtual event which allowed individuals from around the world to "link up" and share experiences. The meetings were recorded and the WHO will report back on their findings in due course.

That's the gist of it. Of course, you're not here for the gist of things. You want my views and, as always, you get my honest (sometimes overly) and frank (always) views on things which stir me.

I am stirred.

I consider myself to be the Joe Bloggs (blogs! ha!) diabetic. I know! I have a presence online and I know some incorrectly read authority into that presence but I do try to just be who I am, I don't even try really! What you see is what you get, at least in thoughts and personality. As I logged into the GDC, I was hopeful of meeting other "everyday" folk who were living with Diabetes and I did but, sadly, not enough of them.

Let me just explain that I consider every lived experience, from every person managing Diabetes, to be equally as valuable as everyone else's. Clear? K...

...Instead of a large group of individuals from around the world, I noted that the attendees were largely individuals from around the world who work for or have ties with various Diabetes organisations and charities. So, what's the problem if they all have Diabetes? The problem is that if those people were dominant in a group discussion, if they are the facilitators of the break out group chats, then they can easily steer the discussion to their own narratives. Essentially, offering the views of their employer, papers they have worked on, the words of the charities and organisations they represent and their own narrative which they have set as "educators". The value of those views are questionable when salaries and other "agendas" are brought into the equation.

The everyday folk had their chance to talk, including me, but it felt that the tone was being set by those mentioned above as they swallowed up large chunks of the time available to offer "their views". I sat in two different break out groups with different people, the feel and dominant nature of some was apparent and after discussing with two other attendees they felt the same.

*Sigh* how frustrating. Part way through Day 2, I left. I'd heard enough of the same voices and the text messages on my phone proved others were feeling the same way. I am less patient than those kind people and I will leave anything which fills my time but does not fill my heart. It was heartening to hear one person note from her group the following in this tweet. If I'm wrong about this then I'm glad to not be wrong on my own.

At this point I'd like to note the following, also in bold to be clear, to avoid causing upset to individuals:

- Several attendees were lovely, genuine, and just living their lives with Diabetes. I gave them my full attention and probably even a social media follow.

- The WHO reps repeatedly noted that organisation critique was fine and we should "let them have it with both barrels" but individual critique was not.

So, if you attended and we hooked up on SoMe later then you're the sort of person who I value the most at such events; the everyday folk, the non-affiliated. If we didn't hook up and you're that sort of person then you know where your Twitter app is!

Alright, while that is likely increasing the blood pressure of a few, it's important to offer balance because honest and frank, right? So, although I am not entirely happy about the large number of attendees with affiliation to Diabetes organisations, I am pleased with the idea of the WHO communicating with individuals living with Diabetes to get a better picture of how we live and how to communicate with us. It can and should be done better and I also think it's important to not come across as totally negative about the experience because these events will only serve to improve the communications of organisations such as the WHO and ultimately reduce the stigma which many face. I hope more will happen and I truly hope the voices heard are not the same.

The photo? Keith Moon, the drummer from The Who. He also made a lot of noise and caused a lot of commotion.

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. 

BUY DIABETIC DAD (MSF) A COFFEE HERE

Prefer PayPal?

BUY DIABETIC DAD (MSF) A COFFEE THROUGH PAYPAL