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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Too Much Or Not Enough

I'm a very vocal advocate of individuality in diabetes. I've certainly used the "YDMV" (Your Diabetes May Vary) acronym many times during discussion and when expressing a view. Type 1 Diabetes is often viewed as simply injecting or pumping insulin to manage consumed carbohydrates and I'm fine with that. I think if you don't have T1D, live with a diabetic or work in the world of diabetes then why would you know much more? It's not wrong, of course, but it doesn't really cover more than the very basics.

Inside of our world (assuming you live with T1D, live with a diabetic, work in diabetes, etc) you probably realise that it's so much more than carbs and Banting Juice. All the decisions that we make are well documented and there are likely lots more that differ from person to person. You might have your own unique decisions to make in regards to your diabetes because you're an individual, living your own life and managing your own diabetes. Diabetes mirrors life in various ways and certainly, for me, the differences between person to person is one of those ways.

I think I've stated the obvious and I'll get to my point and what the title of this blog means!

I've recently mentored a few of my peers in regards to their T1D, you may have read about some of that on the Twitter. The vast differences between those people and the hundreds of other peers who I've engaged with is apparent but one thing which crops up frequently is some of the advice given by HCPs - advice which I'm struggling to understand and it looks a little something like this:

"You're scanning your Libre too much"

 "You're not finger pricking enough"

"You don't need to check your CGM that often"

Those three pieces of advice might be right, of course. My own experience is based upon the "too much scanning" advice. It was likely well meaning! I had complained about injection burnout which may have been confused with general burnout. A high number of sensor scans may have raised a red flag and well meaning advice followed. It was the wrong advice because, for me, I wasn't scanning too much. Why? I live my life in my way as an individual. Scanning a sensor, when your phone is often in your hand due to work and other commitments, was not tasking me or burning me out. Perhaps if I was working 10 hours a day as a taxi driver or heart surgeon then the same number of scans would be difficult or even impossible and noteworthy as a cause of burnout. 

"You're scanning too much" doesn't take into account me as a person with my own life. It compares me to others and even the HCP's life experience and what they believe to be the right amount. I stated why I scan as often as I do and why it's not a problem and we moved on. I don't fear speaking up during a consultation but I do know that others have issues in that setting and they feel anxious about doing anything unless they're nodding in agreement with an HCP.

"You seem to be scanning your Libre a lot. Is that causing you any problems?" might be a better way to address that red flag. But who am I to talk about communication!? *wink*

The same could be said for the other two pieces of advice, above. To notice something a little unusual is right and great care and it should be questioned but never judged or followed with a sweeping statement. "Too much" might be just right, "not enough" might be just right. Great care considers individuality and works with that. Ask questions, talk to your patient, get more information.

The above three pieces of advice might seem innocuous and to some that might be right, to others it might pile pressure on to an already over-spilling plate of decisions and burden and stress. That's why I'm very vocal about HCPs treating us as individuals in every respect and why it makes great sense to treat each other in the same way.  

 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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Size Matters

 

It's not what you're thinking, let's get that clear right away. Although! I am referring to little things in this blog, at least in regards to Diabetes. Those little things which we might be guilty of neglecting, ignoring or putting on the back-burner for another day. I've certainly done those things for various aspects of my Type 1 Diabetes.

Recently, it occurred to me that the little things can get neglected by others. Specifically, our healthcare professionals. I'm a firm believer that the majority of HCPs go into the profession with the very best of intentions and that they carry those intentions throughout their professional lives. Perhaps, with experience, shortcuts are used and without any problems arising from doing something to save time, to allow for a break, deal with a clinic which is overflowing and full of patients, etc. An HCP might repeat the practice because it's a small thing, nothing bad happened. Those of us who have been employed may have done similar things. Perhaps the job was stressful, you needed a break or you just really hated your boss! So, you cut some corners, reduced your load.

Yesterday, I tweeted the image below:

And I asked "Can anybody see the problem?"

The Tweet is here if you'd like to read through the replies.

It's probably obvious to you, if not - That's my prescription for 100 needles to be used on my Insulin pens. The NHS app indicates they cannot be reordered for 3 months. That's 100 needles for around 90 days. A needle should be new for each injection and I average around 8 injections per day.

It's probably an app issue. Probably! It's still a reasonably new way of ordering your repeat prescriptions. I know a way around this by calling my GP's prescription line and re-ordering needles through that method. It's never been challenged so, what's the problem?

Let's assume you're newly diagnosed. You're given a mountain of information to take home alongside the emotional pain of dealing with your new chronic condition. You're going to forget something or make mistakes. Maybe, after seeing your 100 needle allowance, you forgot that your DSN told you to use a new needle for each injection. You assume you can only use one needle per day and you're unscrewing it and moving it around between your basal and bolus pens, each time it's getting blunter, damaging your skin, perhaps not delivering the dose you require, damaging your BG and health in other ways.

Perhaps your maths isn't great and the numbers don't even hit home to you, until it's Saturday morning and you notice one needle left in the box.

It's just a little problem. Perhaps nothing terrible will happen but the chance is there and even things with huge odds have to happen sometimes, otherwise nobody would win the Lotto.

Needles and other Diabetes "paraphernalia" are the basics of life with the condition. Although I can work around my particular problem by ordering meds on the telephone, this isn't the first hurdle I've faced with access to the things I need to stay well, to stay alive. In 2017, I had my test strips reduced from 200 to 100 per month by my GP because my HbA1c was too high. Because, in her wisdom, giving me less test strips would seemingly improve my blood glucose. We spoke, at length, and after I questioned how long she'd been living with T1D and all it's difficulties & quoted NICE guidelines to her (thank you, Martin) my original prescription was re-instated but not without more gatekeeping. "If your A1c is over 7% in 3 months then I'm referring your care to the hospital". It was 6.8%. 

Little problems, little annoyances, a little more burden, Sir? Why, don't mind if I do! Just pop that on to my already burden-laden plate of Diabetes. 

"Oh, you think tech will help your Diabetes because it's proven to help hundreds of thousands of others? Well! We need you to jump through some hoops, go on some courses, give thanks at the DAFNE altar and if things are looking better in 90 days then maybe we'll let you continue to use that"

I've used some artistic licence, there but this one is accurate:

"You're too good at this to need a pump".

Flattery goes a long way! But deflecting through positivity is something I've known for many years. 

There are more but you get the gist. Gatekeeping some things might seem like a small matter, something of little concern, keeping things well within budget. The bigger picture for a growing condition within our population? I don't think I need to spell that out.

I know the NHS isn't perfect and that mistakes will happen. I also know it's 2021 and we're about to trial the use of artificial pancreas technology with 1000 individuals. Amazing stuff! Yet, some are denied enough BG test strips, some can't get an appointment to see a DSN or Diabetes Consultant, some have been promised a pump... in 2019! (they don't have it). Little things are still happening which do not lend themselves to good Diabetes care. Perhaps we need to start spending pennies on very basic care, uniformed care no matter where you live, before we get giddy with the pounds. 

 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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