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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Kindness in Clinic

 

It's been a week, a tough week, for many in the UK. We celebrate Mother's Day under a very dark cloud for women in this country and around the world. Sometimes it's difficult to put yourself in the shoes of others but as a man, somebody who shares the same sex as the majority of people who commit horrific crimes against women, I think the least I can do is to read some of the shared experiences and try to understand what women go through. Beyond that, if I can change my own behaviour for the better then I will.

I tried to do the "read, listen and learn" thing during the peak of Black Lives Matter. I still do. That issue and others have not gone away.

How we treat others, how we address them, how we judge them and the tone we use is something very often "chewed over" by the diabetes community. Some stories are very concerning and remind me of my own bad experiences of diabetes clinics. Would you like a little story? Alright then! Not that you have a choice. I'm telling it:

After a few years of living with T1D, I began to relax a little too much with the condition. Finger pricks were not happening very often and I was eating and drinking anything at intervals which suited me. Pretty normal behaviour for a teenager, I guess. Of course, that behaviour resulted in a noticeable change in my HbA1c. I don't recall the numbers but I remember one particular incident which, even at the time, struck me as totally unacceptable. I saw my then DSN, following news that my last A1c had increased. The conversation began with suggestions that I was an angry young man. (She was right, I was a teenager with a chronic condition, given no psychological support. I was pretty tetchy!) Followed by news of what will happen to me in the coming years if I didn't get a grip of my diabetes. Once the fear mongering over blindness, kidney disease and heart attacks had concluded we (she) moved on to amputations. "I think I should take you to the amputations ward, then you'll see what will happen to you unless you sort yourself out."

Little wonder, you might think, that I stopped attending diabetes clinic appointments at the first opportunity, as an adult.

That tale was from the late 1980s / early 1990s. Over 30 years later, things are different. However, the fear of HCP tone, attitude and judgement is still a thing and not just for me. How do I know? Take a look at This Poll on Twitter

Firstly, let me just say that 291 votes is absolutely NOT a true representation of the diabetes community. It is a TINY fraction of the people living with any type of diabetes. Secondly, I was wrong. I was surprised at the results. I really expected the fear of complications to be an enormous winner. It seems apparent, at least from this little poll, that HCP tone, attitude and judgements are very much on the minds of some when attending their appointments. I think we still have some way to go in that regard.

Kindness in clinic is not a one way street. Kindness towards HCPs is not only for clinics, either. Would you like to know how I start every appointment?

"Good morning/afternoon Mr, Mrs, Dr or even first name terms. How are you?"

Don't get me wrong, I don't really care that much! This is my appointment! but I do think it's a polite thing to say and it gets the appointment off on a friendly footing. 

Would you like to know how I communicate with HCPs on social media?

Politely.

My past experiences with HCPs have no impact on how I communicate with others, today.

HCPs are people, too. They mostly have very demanding jobs, families, relationships and health concerns of their own. They don't deserve to be hauled over the coals by people they might have never met or even interacted with. And sometimes for the most ridiculous of reasons! The defaming of some has been appalling and that needs to end. If you're happy to make hurtful comments about HCPs that you've never met then I really think you've no business to advise others on kindness.

That's it for today. I encourage everybody who reads my blog to try to be a little kinder to everybody around them.

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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