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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Diabetes Is Work

I don't know how many jobs we're supposed to have on average in our lifetime, I'm sure there is a study or some incredibly scientific research somewhere or maybe you already know? Let me know in the comments at the bottom of the blog if you do. Work? But, this is a diabetes blog! That's true, diabetes and ranting - often the two go hand in hand. However, my time spent in diabetes advocacy, supporting others, tapping out blog posts like this one, creating videos, talking to media... you get the idea, has steadily increased in the last three or four years. Something, unfortunately, has to give.

You may know that I've spent the last decade or so as a self employed worker. The benefits of that type of working life are many; working when I choose, always being employee of the month, etc but there are many cons to that too; no holiday pay, no sickness pay, working 100 hours a week, working 2 hours a week, etc - let's just say that it's not a stable way to earn a living, a little like playing a violin on the Titanic. Everything is lovely for periods and everything is not lovely for other periods and sometimes you're going to drown. 

What do I do? - I get asked this at nearly every diabetes conference or meet up! I make people feel beautiful. I sell cosmetics, at least, I used to. Now, not so much.

A quick look at what that job entails. I buy stock from wholesalers and flog it on the Internet. It's gone reasonably well although, I had no intention of doing the job for so long and I've backed away from that in the last three or four years. See paragraph one as to why that might be.

Not only has diabetes "stuff" begun to fill up more and more of my time and much as I hate to admit it, I've aged. 46 revolutions around the sun at the last count. I've also developed osteoarthritis in a shoulder which makes the lifting of heavy boxes a bigger struggle than ever before. Clearly, this vocation is no longer for me on a full time basis and I need to do something less physically demanding. 

From 2005 to 2010, I worked in the poker industry as well as playing the game to a pretty high level. My work in that industry taught me a lot about online marketing, socials and optimising for the almighty Google. I suspect that my blog does better than it might for that knowledge. So, is SEO the next step? While that's a perfectly fine form of work, it is rather like accounting; incredibly dull (I was once an assistant accountant, too). Work, at my age, needs to be a fulfilling thing as well as put food on the table. 

And back we go to diabetes advocacy. I love the diabetes community almost without exception. I've gained so much from my peers and friends that I doubt I could ever repay them. I do try, though and rarely does a day or two go by without somebody reaching out to me for some guidance. Sometimes the reaching out has been aggressive or tainted with accusations - still, I tried to help as best as I could as I try to see the good in everybody and I suspect frustrations can rise to the surface very easily when it involves our health. When it goes right, when a person gets the support which improves their life with diabetes, the satisfaction is enormous. I really can't compare it to anything else. There are a few examples of that, from late night messages about a dosage error to getting several people approved for an insulin pump and everything in between. It doesn't feel like work because I feel like I'm helping friends and I'll continue to do that for as long as I'm able. What it is, is time - You're understanding the image used for this post now, right?

Time is finite. There are 24 hours in a day, remove sleep time, eating, personal care, the demands of friends and family and you're left with a much lower number of hours in a day to work. That, of course, goes before such frivolous things such as going out and having fun. Time is very valuable and that's why we work for reward in the form of money. Perhaps if you work for the NHS, you work for very little money. We need that to buy our food, pay for the home we live in, pay for the energy to keep us warm and to help us go back to work again at the soonest opportunity to earn more money to do all the same things again. Wow! Now that I've written that, life is one endless depressing cycle of working and earning isn't it? Anyway! Most of us need to work to earn the money we need to live. 

I'm not changing anything that I do right now. If we have conversations then we always will, if I mentor you for free then that will continue, my socials and blog and vlogs and all that jazz will always be for free. What will happen is that I'll offer additional things and ask for a small amount of money for my time. You'll find details about such things at the bottom of this blog (The Blog Member link) and that's it. It'll start from £3 as an appreciation, a tip if you will, up to bigger sums for greater time-demanding support.

 I'm hopeful that means I can carry on doing the good things, the social posts, the talks, the articles and charity fundraising & volunteering while time dedicated to direct support and mentorship will no longer impact on my day to day income. Perhaps it'll mean that I can finally stop selling 20kgs of lipstick?! and concentrate my time on helping people to feel better rather than look great.  

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Taking Diabetes Advice

Happy New ear... Year! I hope 2023 is very kind to you and that your diabetes is more easily managed than ever before. 

I wrote about sharing our diabetes information, data and stories in my last blog post. If you read that post, you'll know that I'm very pro-sharing and the benefits of reading and listening to the lived experiences of my peers has been profound. I will go on to read and listen to my peers (now friends in many cases) and hopefully continue to learn more about my Type 1 Diabetes throughout 2023. Today, I'd like to bring up the subject of advice, why it's different to offering a lived experience story, why you shouldn't give advice and why you SHOULD take advice from the right people.

It is difficult to not offer a word of advice through social media at times. As I've aged with my T1D I've picked up a lot of useful information, tips and tricks along the way which I have stored in the space dominating, diabetes area of my brain. A person who is seemingly in need of advice is likely to pop up on socials regularly and if you're the sort who likes to help then the temptation is a strong one. So, why should we be cautious? T1D has many nuances, twists and turns, inexplicable happenings and sometimes it's just a driver of bizarre events. The very basics of the condition appear to be common from person to person but dig into the details and you'll find your peers, any peer, probably has a different reaction to any given thing. That makes giving advice a very dangerous thing to do. In the UK, we have trained professionals who are medically and legally allowed to offer certain types of advice. It's unlikely that @Johnny5543772 (might be a real account, apologies if that's you) has the right qualifications to offer you advice in regards to your health. It could be that Johnny has the right qualifications but no access to your medical notes, history, medications, allergies, etc. His advice, or the advice of any well meaning individual, might be sound but it could also be deadly. Giving and taking medical advice through social media seems like a big avoid to me.

Advice, of course, is not the same as offering your lived experience. Questions about T1D will appear on your timelines frequently but rarely are the answers black and white. Questions of technology accuracy, insulin speeds, skin reactions, even clinician reviews will likely differ from person to person. There are many more examples, I know, but you get the gist. Accuracy reviews are a particular gear grinder of mine and that's not because poor accuracy in blood glucose monitoring isn't important, it's an essential part of T1D management that needs to be reviewed, it's because we hear different stories from different people. For example; Libre 1 was a terribly inaccurate piece of equipment for me. I even made a couple of videos to highlight it however, I have since accepted that it worked very well for many others and it wasn't a case of Libre 1 being inaccurate, it was a case of Libre 1 being inaccurate for me. The same could be said about some versions of Dexcom. So, a question appears about a CGM; "Is CGM X accurate?" The answer can only be based on your experience of it or the second hand information about it from your friends. 

CGM accuracy is a rather specific subject, I won't dwell upon it, but hopefully you're understanding what I'm talking about - T1D and all that comes with it can be different from person to person. Advice from strangers should be taken with a large pinch of salt.

What about the people "in the know"? The qualified, your diabetes HCPs. It's been said that nobody knows T1D like a T1D and that's probably right in many respects. Let me tell you a little story which proves that the opposite can sometimes be true. In late November, I was set up with my T:Slim X2 pump and I was sceptical about the afternoon-long appointment. I was confident about setting up the device and it's on going usage, indeed I didn't learn a great deal of new things in that appointment but it was still worthwhile. The suggestion to change my basal rates was put to me and, to the amusement of the group, after a couple of minutes talking to the DSN, I announced "I'm sold! I'll give it a try". I'm glad that I did despite the logic not really settling in my brain. The new basal rates have increased my TIR (time in range) and my eA1c has reduced by 0.2%, fantastic. I also began to use the bolus wizard on the pump, following DSN advice. Both changes to my management have improved my T1D. I don't believe that my HCP has diabetes but her calculations and advice have been sound. 

While we're in the driving seat with our T1D and rarely do we see our diabetes team, sometimes the best advice will come from them and that's where I believe you should seek your medical advice while learning from the lived experiences of others and learning to trust your in your own. 

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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