Type 1 Diabetes and Sight Loss

 

I am often asked about my sight loss in relation to my T1D. How it came about, how I adjusted, acceptance and advice are often subjects of conversation and I'm very happy to discuss. Complications are a thing for some T1Ds and we shouldn't avoid the subject. Here's a little about my diabetic retinopathy without too many gory details. 

As a person living with type 1 diabetes and sight loss, my journey has been filled with challenges and triumphs. I was diagnosed with type 1 diabetes at the age of 8 and experienced some eye complications due to high blood sugar levels at age 31. Eventually, my eyesight started to deteriorate, and I was diagnosed with diabetic retinopathy.

The diagnosis was devastating for me. Losing my sight meant losing a part of myself, and I had to come to terms with the fact that my life would never be the same. I had to learn new ways of doing things, like cooking, cleaning, and getting around. It was difficult, but with the support of my family and healthcare team, I learned to adapt. I haven't lost all of my eyesight, but enough to be registered as blind. That feels like a very strange thing to type because I'm not blind. If you've met me, you've probably noticed that I can get around pretty well. Indeed, my sight is as good today as it's ever been since my retinopathy diagnosis. I prefer "visually impaired" when describing my sight loss as that's more accurate. Although, some hear visually impaired and automatically assume totally blind - for me that's far from correct. 

One of the biggest challenges I faced was managing my diabetes and my vision loss. I had to learn how to measure my insulin doses, check my blood sugar, and administer my insulin injections without relying on my sight. It was a lot of trial and error, but I eventually found a routine that worked for me.

Living with sight loss and type 1 diabetes has also taught me the importance of self-care. I've had to make my health a priority and take care of my body in ways that I may not have otherwise. I make sure to exercise regularly, eat a varied diet, and keep up with my doctor's appointments to prevent any further complications.

Despite the challenges, my journey has also been filled with triumphs. I've been able to pursue my passions, like diabetes advocacy, writing and public speaking, and inspire others living with sight loss and diabetes. I've learned to appreciate the little things in life, like the sound of birds chirping or the feeling of a warm cup of coffee in my hand.

Living with sight loss and type 1 diabetes is not easy, but it has taught me resilience and strength. It has taught me to never give up and to always find a way to overcome obstacles. I hope that my story can inspire others living with these conditions to keep fighting and to never lose hope. If you get a diabetes related eye complication then it's alright to be fearful, angry, upset and even depressed. Nobody wants that news, but know this; most eye complications can be easily treated and needn't be as severe as mine if you attend your appointments and follow the advice you're given. 

I have written other blogs on this subject with more detail regarding surgeries and treatments. Take a look through my posts and have a read if you're interested in that. 

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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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The Murky World of Diet and Type 1 Diabetes

A subject, today, which never causes any debate or angry opinions on social media; Diet. Yeah, right! If you're only an infrequent social media user, you'll probably have noticed much antagonism when it comes to diets, even a passing remark or a sharing of a photograph can stir up plenty of hostile debate. For somebody who uses social media on a daily basis to talk about diabetes, such as me, then it quickly becomes apparent just how often the subject can stir angry exchanges. For somebody, such as me, who has spent many years in online marketing it also becomes apparent exactly why the fires of diet "discussions" are often stoked.

Firstly, I'd like to clarify that I am not anti any diet. I eat a varied diet which isn't driven by my diabetes. What you or anybody else chooses to eat and the reasons for that are entirely personal to you.

Right! Let's get the marketing issue on to the table. It's cunning, it really is,. You can see how such marketing behaviour works in other industries, too. Politics isn't really an industry but elements of it use the same methods to create noise. That noise comes through fear and hatred. In politics, that is especially dangerous as it can stir extreme views and, following that, extreme events. Trump, Washington, anybody? 

Anyway! in the diet industry, the same thing works all too well and specifically in relation to diabetes where the fear of complications can be wheeled out at any given time. Of course, it's not enough to simply say "If you eat that, you'll have high blood glucose and your legs will fall off" Fear of a terrible complication alone isn't always enough to sell a diet. You might notice that insulting remarks are used, the diet seller will insult the intelligence of the innocent food muncher. That won't often result in a diet conversion but it will be seen by others and nobody wants to be seen as "stupid" or "dangerous" by posting their carby dinner! and wait! Maybe they have a point because they have thousands of followers?! Oh no... What's that book called again? Where can I subscribe to that diet?

Kerching!

What a horrible industry. Preying on the fears and weaknesses of others to increase book and service sales. It's big business. You'll notice many accounts that are no older than 12 months on Twitter, they'll follow many diabetes related accounts, quote the "master" account many times and try to engage with anybody who tweets about diets and diabetes. There are many hundreds of these accounts, created by others and purchased for a small fee by the "master" account and diet merchant. All that engagement, all the impressions, all the vulnerable people who are desperate to avoid complications, filter down to the one person who will be profiting from the sales. There are many people who perform this simple trick, many different diets, some run by the same people who contradict each others diet advice because they don't care about the diet, you, your complications or well being - only your money.

Kerching!

It's not just random people in far flung places or nations with questionable rules and regulations. There are plenty living within the UK and USA. Some may even have impressive qualifications in diets and diabetes fields and that might seem reassuring to you. Don't be fooled. Unless the medical advice that you're given stems from a professional who can read your medical notes and history then it's not worth a minute of your time or a penny of your income. 

Away from the diet merchants and their murky behaviour there are the well meaning folks who have stumbled upon a diet and lifestyle which has worked well for them. What works for one doesn't necessarily work for another and blindly (no complications pun intended) following the words of a stranger on the Internet seems like playing with fire to me.

For instance, below is an 8 hour graph of my blood glucose from the early hours until mid-morning. 

Pretty good, huh?

Now, let's assume you stumble upon that and I'm making lots of noise about the diet I use to achieve this. It's so easy that anybody can do it and all you need to do is send me £500 to find out how it works. I'll mention a few words such as "Carbs are fine" to gain your interest and "You don't want higher numbers and complications, do you?" to stir your fear. 

Still not sold? I have more tricks! I'll engage with the wider community via Tweetchats, Diabetes Chat, DSMA, etc. I'll even attend a few conferences, meet a few people in person and gain trust. I'll mention high profile people who work within diabetes to look so trustworthy... maybe they'll reply and I'll look REALLY trustworthy. Hi Partha.... Hi DiabeticDadUK.... Hi anybody with a few thousand followers. Let's throw in a few popular hashtags to support worthy causes, even more trust!

Still not sold? Then I'll unleash the bots who will quote my diet to thousands of you. So many people are following the diet that it MUST be trustworthy! 

Murky, isn't it? I don't begrudge anybody making a living through work in diabetes, by the way. I have made a tiny income from Buy Me a Coffee, ads and speaking engagements. It would be hypocritical of me. I do strongly dislike the practices of diet merchants and even if those practices are legal, many are morally bankrupt. Please get your diet and diabetes advice from your HCP team and block anybody who tries to sell you a diet.

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HbA1c and Time In Range

As I wrote the title to this blog, I immediately worried about how boring it might be. When you are diagnosed with diabetes, pretty much any type, then numbers and data (hence the image above) quickly become a part of your life. Firstly, I promise that this post will not be examining any numbers in great detail - that would be horrendously dull and you're probably not here to find out what my HbA1c and TIR currently are. If you are, then I'll tweet those numbers especially if they're good ones! 

Shall we start wth HbA1c? You might get yours in a plain number format or a percentage and it gives a reasonable indication of how well things have been going over the last 90 days. Or does it? An average, kind of, number based upon your blood glucose? Hmm. Perhaps if your BG is generally very stable and it's floating around in the happy zone for the majority of the time then your A1c might reflect that you're doing well. What happens if you're having several hypos per day, over treating them, and correcting several hypers per day? Lots of numbers such as 2, 3, 18 and 19 might be on your CGM/Flash/BG Meter and your time in the happy zone might be very infrequent yet your HbA1c might show that you're doing quite well with it's average BG offering. Clearly, you're not and that's why HbA1c alone can't be trusted to give an accurate picture of your diabetes management.

Time in Range seems like a better way of monitoring how well things are going. The picture is more detailed with this data. We can identify problem periods of time and change what we've been doing to reduce those instances. Time in Range data may just be one of the most simple yet brilliantly effective innovations in diabetes care in the last decade. I wonder how many of you have left a diabetes review with your HCP with the news of elevated HbA1c ringing in your ears? "It's too high, you need to get that under 8%... around 7%.... 6.5%?" and you nod and agree and off you trot, back to work or home, with absolutely no idea why your A1c is elevated. Perhaps it was that sandwich? or maybe your entire diet?! Oh no! "Keto, that'll solve it". Well, maybe. 

Time in Range should help to stop the overreacting to HbA1c results. If it's a bit high, all that data can be looked through and if you leave notes on your CGM/Flash device app then it's even easier to identify what might have caused the hyper on that day.  

Can TIR be problematic? 

I'll wager that you've seen a few 100% TIR screenshots on your socials. Maybe you've reached the unicorn zone, too? It's a nice feeling even if it's not really that much better than a 90% or 80% TIR. Of course, 100% doesn't always tell the full story. If your TIR was at 100% over 90 days but your BG was between 8 mmol/l and 10 mmol/l in that period then your A1c would reflect a more sketchier management compared to the incredible management indicated by the 100% alone.

100% over 90 days is likely impossible for most but a high TIR might also indicate inaccurate CGM/Flash readings. I don't know of a single device which hasn't had accuracy questioned or complained about on social media. That includes me, I've made noises about inaccuracies dating back to 2017 and the issue is still a big one, six years later. Artificially inflated TIR might be noticed by a higher than expected HbA1c - just as the fictional blood glucose diaries of old proved, the wrong numbers from BG checks can be picked up when your A1c comes back at 11%  

Also, numbers and targets and TIR can get a little overwhelming for some. Some feel an incredible sense of failure because their Time in Range is 69% and they've read that it needs to be 70% or better. That's such a shame because 69% TIR is probably pretty good! and 1% off your "goal" is such a small amount. 5% is a small amount, so is 10, yet not reaching that target number can deeply affect some.

Also! You're not a number. Your life is wonderfully unique to you and your diabetes will likely reflect just how much time and energy you have to manage it. In the late 1990s, during one of my infrequent diabetes reviews, a consultant decided that it would be motivating for me to know of the previous patient's HbA1c. The guy walked by me on his way out of the building. During my consultation, I found out what his first name is and his last HbA1c result. "X is doing brilliantly, his A1c is..." Can you imagine being offered that information at your next review? There would be uproar on socials and I'd be leading the roaring. In the 90s, I was less concerned but I responded sarcastically (Me! Sarcastic? No!). It left me feeling totally uncared about by that diabetes team. My hurt aside, the guy with the great A1c was also being viewed as a number! What a crap time to be a diabetic. Things are much better now. At least they should be for us all, as diabetes care has evolved hugely.

Back to the subject! It seems to me that HbA1c and TIR can be useful when viewed together. Alone they can be problematic and as much as HCPs and your peers might focus on those numbers, please remember that they are just numbers and not your wonderful unique diabetic self.

Sorry if this post was a bit "numbery" and boring. 

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Out Of Order

You might remember two of my earlier blog posts if you're a regular reader; Hobnobs in Hiding part 1 and part 2 are two of my more popular posts. If you've never read those or you'd just like a refresher then:

Hobnobs in Hiding Pt.1 is here

Hobnobs in Hiding Pt.2 is here

Those posts contain detail of my early diabetic life through school, my struggles to come to terms with my diabetes and the extraordinary lengths which I went to, to hide my condition.

Why am I revisiting those posts? Well, back to the present day, you may have noticed some controversy on Twitter surrounding a very tiny newspaper piece which was sent in by an anonymous reader. Liana tweeted a photo of the offending article but if you haven't seen it, it looks like this:

Alongside many others, I expressed my displeasure at using column inches for such a stigma breeding opinion. The Metro published replies to that opinion and that is perhaps some saving grace for them. However, should it have been given the time of day in the first instance? We can't assume readers pick up and read The Metro on consecutive days to hear both sides of the "argument" - Three responded to the offending comment.

Not that there is an argument to be had or any kind of debate, really. I strongly believe that anybody should be allowed to treat their illness in a public place when necessary but, as a Type 1 Diabetic, I am only going to write about Type 1 Diabetes in this post and the incredible dangers of causing people like me to hide their diabetes.

It is only relatively recently that I gained the confidence to talk openly about my diabetes and even more recently that I have gained the confidence to do diabetes "stuff" in public. Many have simply bitten the bullet and never hidden their diabetes, public injecting and blood glucose checking has never caused them any anxiety and they just crack on with things. Others have always had a problem in that regard and, to this day, should I need to inject in public rather than use an insulin pump I would have anxieties over the process, being watched and being judged. Reading through the Twitter threads following the Metro controversy, it became apparent that some are going through what I did in the 1980s and what I still would be going though over public injecting. 

Bathrooms, toilets, the WC, whatever your preferred term, appear to be the go-to place for many to hide away to do their diabetes necessities. Some even recalled incidents of being told or asked to use the bathroom to check their BG or administer a bolus - Hence the image used for this post. The bathroom might not be out of order but demanding that a diabetic use one to inject absolutely is!

Nobody with diabetes should feel ashamed to have the condition. I doubt that many of the diagnosed woke up one day and decided it would be cool to be a diabetic and actively tried to make it happen. Millions of people have diabetes of various types. It is incredibly common. So, why are we being shamed, stigmatised and made to feel like second class citizens?

The media.

Society still takes on board a lot of media influence. That might be TV, Internet or "newspapers" such as The Metro. Influence isn't as difficult as you might imagine. A few carefully chosen words and images can cause many to act and think in the most horrendous of ways. Sensationalism sells much copy, too. Could that be the reason why The Metro published the thoughts of "Shocked" the anonymous person from Tyne and Wear. With much attention and even reader responses, the following day, I wonder just how real "Shocked" is and just how truthful their little comment actually is. The British press are well known for the somewhat bending of the truth. It sells copy, remember? 

"Shocked" suggested an injection into the hip, too. I've injected in various places but never into the hip, have you? and the lifting of the skirt to the hip? I've never worn a skirt but I can only imagine that hip exposure is easier from pulling the top of a skirt down a few inches. 

Things don't add up with this little opinion piece but that's by the by. It's published and the easily influenced may feel the need to verbalise how shocked they are should they see a diabetic doing what they need to do in a public place. 

A person may then neglect to inject, pump, check their BG, flash a sensor or check their CGM in public from then on. Purposefully neglecting their T1D management, conditioning themselves to hiding it and potentially causing complications issues in the long run, hypo issues in the immediate term. A person who didn't ask to be a diabetic and who is just trying to manage their chronic illness to stay alive and well.

We talk about language in diabetes a lot. Sometimes, that's very valid. Sometimes, not really. In this case and in every stigmatising piece published or broadcast by media, I firmly believe it needs to be called out and corrected in the loudest ways from the most senior people working as advocates. Stigma and the discrimination it breeds is absolutely out of order. 

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Being Heard In Diabetes

A curious title? Perhaps. Hang in there and allow me to explain. This is going to be a positive-in-tone blog post about our voices as diabetics and how today, in 2023, things are far different and far better than they were only a few years ago.

Living with a long term condition, such as diabetes, is a huge burden for many to shoulder. The nuances make the burden different from person to person and in some cases individuals report no burden at all. It's a long, varied, spectrum - the burden of diabetes. What many have spoken about and in some cases shared experiences of historical events is that as a patient they rarely felt listened to by their HCPs. It's something I can relate to and also something that I've noticed a change with.

When I was a lad, it was all trees and fields as far as the eye could see. And a hospital or two. At one of those hospitals, I attended my diabetes outpatients appointments every 3 or 4 months. They were terrible. From threats of visits to the "amputation ward" to a single focus on the numbers in my blood glucose diary (most of which were lies anyway) I never felt heard, never supported and was once described as "an angry young man". Little wonder, you might think, that I decided to put my head into the sand and as an older teenager and young adult I would avoid attending clinic. 

Let's jump back to today; less fields and trees but still a hospital or two - a different hospital or two in a different area. What's different? Well, the general attitude of my HCPs is outstanding. Despite what you may have read, I'm a 46 year old adult and my treatment in the last few years has been excellent, respectful and kind. Compared to my treatment in the 1980s and 1990s it is a different world. I feel delighted to have this much improved care but also a little sad for younger me who went through years of very poor care. 

It isn't just in the clinic environment where things have improved. As diabetics, even those recently diagnosed, we are seen as experts of the condition. It's probably right to suggest that some know an awful lot more than others but eventually nobody will know more about your diabetes than you do. It's very respectful to view the person living with the chronic illness as an expert and it sets a great tone for communication from then on. As experts, our views and experiences must matter. You may have noticed many conferences which focus on our lived experiences and our views on diabetes and long may they continue. As we share, as we listen, we help others and we help ourselves. 

You may have also heard of the draft guidance for Hybrid Closed Loop, recently. Our views matter there! NICE are welcoming comments until 5pm UK time on January 31st - soon after this blog is published, so head over there and let NICE know where the guidance for HCL should be focused. 

Social media has become an incredibly powerful way to be heard in recent years, too. Diabetics from around the world share experiences, knowledge and their struggles. Many have cited the #GBDoc community on Twitter as transforming their diabetes for the better. I include myself in that as you probably know if you've read much of my blog before. Because of being heard by my peers, by HCPs and by some diabetes businesses I am able to live a far less burdensome life than that of just a few years ago. I'm also able to dedicate some of my time to helping others to achieve their diabetes goals. 

Although I live with various conditions, Type 1 Diabetes has dominated my time and energy for almost four decades, but never to such a small degree as today. Things seem set to continue to improve in most areas of managing the condition, too. Technology is advancing and even the cumbersome NHS are embracing it. Peer support has been given the recognition it deserves. The diabetic voice is a loud one and heard in almost all circles. Of course, there is much more which needs to be done to provide fantastic care to everybody living with diabetes in every country and not just in certain areas of the United Kingdom. 

There is never a great time to be a diabetic but 2023 is certainly a better time to be living in the UK with a wonky pancreas than most years gone by. Let's keep talking and keep pushing for the very best care for everybody, regardless of type.

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Valued

New year, new opportunities and a new way of looking at diabetes advocacy. Despite being only two thirds of the way though the marathon month of January, many interesting diabetesy opportunities have appeared in my inbox. I'm flattered but I've had to decline a couple of things and in this blog post I'm going to tell you why and why you should consider saying "No, thank you" when approached to take part in conferences, webinars and anything that uses your valuable free time and precious energy.

2022 was hectic and I've no complaints. I brought on many of the diabetes related work myself and I feel happy to have helped charities and individuals directly. As I noted in my previous blog, I'll carry on doing those things but I'm pretty much at capacity for volunteering and supporting. There are only so many hours in a day and like most, I must value my time and energy.

2023 has started in a similar hectic fashion and that's fantastic because I love doing the various things that I do. One very flattering and interesting opportunity arrived in my inbox around 10 days ago. At the time, I was being terribly ill and I was simply unable to respond to messages and emails until I'd properly recovered. The opportunity was to chair and introduce a lecture at a conference here in the UK later this year. I don't really consider myself to be a speaker although I have given talks and I do have a very vocal presence on the Internet. So, it was lovely to be suggested for that role. The conference organisers made contact and offered further detail which included the event location - approx 4 hours away, by train, from where I live (an 8 hour round trip). I don't mind travelling at all, sitting still and doing nothing for hours on end is my favourite thing. However, 8 hours of travel is a lot and this particular trip would likely need me to spend a night in a hotel. Travel and accommodation is something most conference attendees need to consider - a very normal thing. In addition to that travel time, accommodation and costs, there must be a consideration of prep time for the chairing of the lecture and introductions alongside the time spent at the conference and lecture on the day. 

Let's look at what time might be used up so far; 8 hours of travel (probably 9 hours if travelling to train stations is factored in), an overnight stay in a hotel (approx 12 hours), a day at the conference and lecture (approx 8 hours) and time to prep' for chairing and introducing (2 - 3 hours). Overall, the whole thing would likely take up a day and a half of my time. Let's call it a little less, 30 hours to make life easier.

If you are in employment, 30 hours of work on a low wage will result in £200 - £300 being paid to you. You might pay for your own travel to work, of course but that's unlikely to be an 8 hour round trip commute. If it is, then huge respect to you and I imagine your salary is far higher than the low wage example above. 

The conference in question is organised by a charity and one that I have supported previously via fund raising. When a diabetes charity asks me to do something, I will nearly always agree and do it for free. So, it was no surprise to learn that for chairing and introducing the lecture I would not be paid. What was  a surprise? None of my travel and accommodation costs would be covered, not a penny.  Those costs would likely run to a couple of hundred pounds. The conference organiser offered access to the conference on the day of the lecture and access to the welcome event as recompense. 

You may have guessed which conference and charity I am referring to by now. The event is for HCPs. Attendees often have their costs, including event ticket costs, covered by their authority or by a commercial diabetes organisation sponsor. While I have contacts in several commercial diabetes orgs, I don't feel inclined to ask any of them to cover my costs for such an event and the chair role asked of me - there is simply no upside for any of them.

And, sadly, clearly, there is no upside for me. Much as I'd love to help the very kind person who put me forward for the role and as much as I love to help diabetes charities, it would be much to my financial detriment to pay for all my own costs alongside losing a day and a half of working hours. I declined the offer and it made me very sad to do so. It also made me very reflective of the use... maybe the using... of diabetes advocates and any diabetic who is keen to tell their story. 

There are many fabulous events throughout the year. Some are aimed at diabetes folk, some for HCPs, some a happy mix of the two. A commercially run event should be covering the costs of speakers, chairs, pretty much anybody who brings content to the stage - They should really be paying those individuals, too. Charity events and events created for the benefit of diabetics, in particular those which are free to enter, should probably just offer to cover travel and accommodation costs of anybody standing on the stage unless there is absolutely no budget. 

No budget might be the case for many events and the organisers of those should be congratulated for bringing value to and awareness of the diabetes world. In the case of the conference above, the one I have declined to attend, chair and intro at, well, I'm very aware of the financials. 

So, if you're asked to do something for a diabetes charity then I encourage you to value yourself, your time and definitely any costs that you might incur.  You might dig deeper and check balance sheets *shrug* just saying.

Just before I sign off, for clarity; I am a big supporter of many diabetes charities and I will remain so, especially the smaller ones such as Action4Diabetes. I encourage you all to do what you can to help your peers through charitable work.

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