Individual

Are you the stereotypical diabetic? That question should light a fire in your gut because it is laden with problems. Let's ignore "diabetic" for this blog post, feel free to insert your own preferences in place of that word, and instead focus on the stereotypical part.

Stigma surrounding diabetes is frequently found in most corners of the Internet especially the social media platforms but, it is often heard and experienced in the real world too. 

"You don't look diabetic"

"You're too old to be a Type 1"

"Complications? I guess you didn't take care of yourself!"

I'm sure that you've heard of one or two of those, maybe experienced some personally. They're very thinly veiled stigmatising and mean remarks. You may have challenged them or you may have turned the other cheek - it is very difficult to challenge a stranger on any comment, most humans prefer a non-confrontational life and I wouldn't judge anybody for ignoring comments which promote ableism. You don't need to be brave all the time.

We're brave(r), of course, on the Internet. It's easier to challenge from behind a screen and sadly it's just as easy to dish out the horrible comments. I've been the victim of a few comments in the last 5 years on Twitter. A few were brave enough to tweet me directly, others preferred to subtweet and in one particular case embark on a prolonged period of stalking and accusations - all without names of course because even Internet bravery has a limit when you're working for a diabetes charity and a self-styled advocate for all "PWD". 

However, stalking and bullying is a slightly different subject to today's blog. Stigma is also slightly off-topic although it plays a large part in the views which many form of the "stereotypical diabetic". Individuality is a great thing - a wonderful, beautiful and educational thing which should be encouraged and embraced by us all.

Cheesy stuff, huh? Although, it's true! If we all accepted each other as different, that there is nothing to fear from differences, then that's stigma buried. It may bury a lot of hatred, too. It's very easy for me to write such a solution but I very much doubt I'll witness such as shift in thinking by society in my lifetime. Still, the encouragement of it might just reduce some of the more hateful things in life eventually. 

Individuality doesn't end at the door of stigma and being kind. I firmly believe we need that in healthcare circles. It's probably right to say that about every aspect of healthcare and it's probably right to say that most HCPs treat patients as individuals and with the greatest kindness. It might also be right, if we consider diabetes, to say that we're not always treated as our brilliant, unique selves. Why not?

There are guidelines and criteria to start with. Every good HCP will want to follow the lead of their... lead? for fear of reprimands - in whatever form they might come. So, when a guide is published the good HCP will do as the guide suggests even if they know it to be incorrect and potentially putting themselves in an awkward position with patients. That's alright, though, because a patient might only have a moan or take up more time at an appointment and that's far more preferable to a reprimand. And what do patients know anyway?! Hmm. Well meaning guides probably fall behind criteria when it comes to impacting on patients. Thankfully, we're seeing some criteria changed or relaxed when it comes to access to some forms of diabetes technology but it wasn't very long ago that I experienced the cold refusal of "because criteria" and it seems to still be floating around today despite changes no longer being new news. 

"We need this and that..." says the advocate.

"They need this and that but only if..." says the criteria.

Using "we" and "they" so generously has never sat well with me unless, of course, every diabetic it relates to has been consulted. That's impossible! But, research!...

"But the research says...."

I just found out that 100% of people love coffee. I have solid research on the subject, sample size: 1 - me!

Do you see where research ceases to be research if numbers are small? Let's say, for example and completely randomly, 800 people were researched about communication in relation to their diabetes, 600 came from a charity in one country, it was all done on the Internet and via the charity's own web site with questions and even answer options created by the charity. The data? collected by the charity. That's then cited as good, global research. There are approx' 500 million people living with diabetes globally. It's not really research, is it? I've got two legs and I can run if the buffet is open but I'm not really an Olympic sprinter. 

So, we know research needs to be done properly and if you have a little look around you might be surprised at what passes the "Good enough" test.

Perhaps, as some undoubtedly already do, HCPs who treat patients based upon their individual needs and facilitate access to whatever is available are some of the true pioneers of the diabetes technology revolution and the modernising of diabetes care. You don't need a guide, ask us. You don't need criteria, use your brain and your heart.

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 

Take It Easy

A couple of days ago, I tweeted about Time In Range. It was a tweet inspired by my previous week of blood glucose data which saw six days of fabulous numbers then one day of less than fabulous. As day 7 progressed and I struggled to establish a BG under 10, I felt the frustration build. My 24hr TIR was 33% and I was beginning to get pretty irritated by what I was seeing. Perhaps that is something you've experienced? Our hard work can pay off on one day then the same hard work just will not yield the same results on another day. Annoying, huh?!

Prior to that TIR tweet, I had recently been involved in many discussions surrounding research. I'm rarely dismissive of any single person's experience unless it is dressed up as research. It is pretty difficult to accurately conclude a study based upon your own data, your own research of... yourself! There are tonnes of problems with that from having the absolute minimum in sample size to your own biased, skewed, point of view. Research should involve big numbers, where possible. Many aspects of Diabetes are researched to form what is deemed as a good opinion or even safe advice. Not all of that "research" has been conducted adequately to form a good conclusion. I'll leave it to you, reader, to discover the shoddy research which backs some aspects of Diabetes. Back to TIR!...

...and big numbers, your research, should apply when you're concluding how things are going in regards to your own management and your Time In Range. So, after the initial frustration of 33% TIR I made a coffee and had a few biscuits (bolused for, ofc) and relaxed. One poor day doesn't represent how hard I work to take care of my T1D. The same could be said for any period, really. A bad year isn't enough data to determine how hard you work to take care of your lifetime with T1D - maybe that bad year is only 2% of your time with T1D and you've been living through a pretty rough 12 months, personally? Perhaps there isn't an obvious reason because, as Diabetes loves to prove, there are very often no apparent reasons for what's going on.

The title of this blog post is Take It Easy and I think it's time for me to worry less about day to day fluctuations in my Time In Range. I have a lot of history and TIR data since using an insulin pump. I know that I float around 77% - 80% and I know that is a pretty good level of management so, why should I stress about a very tiny snapshot in time? I'm certainly going to try to be less of a drama llama about the numbers in future and try to remember my own words; you'll never be a perfect diabetic - there is no such person. Easier said than done! but I'll try.

I wonder if I/we worry about the wayward days because of the nature of our condition. Essentially, our body is attacking itself and we have no control over that happening despite it being OUR BODY! That's the crazy thing about this autoimmune disease; We have absolutely no say and no control in it happening. When it's here, we're left with trying to manage it to stay alive and stay well, no easy task. Perhaps now we have the tech and the data to establish some form of control, we think we can tame the beast every single day. Maybe we tame the beast so well, so often, that when we do have a wayward day it feels far more stressful and worrisome than it might if we were managing our T1D via guesses and infrequent finger pricks. 

All our technology and information is massively helpful (to me, at least) but it doesn't guarantee perfection, it is certainly not a cure. 

So, I'll end this short blog by encouraging you to not beat yourself up over your Diabetes and everything related to it. You will make mistakes and you will do everything right - that's called being human. Doing your best as often as you can is all you should aim for. Your best is not the T1D management of somebody else. You do you.

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 

Waking Up and Getting Up

If your brain is singing "has never been easy, oh oh..." then you're my kind of person. If you're wondering what on earth I'm referring to then search "Elastica songs" in your Google.

Sleep! Yes, that most precious of things. We might joke about the amount we get (or don't get) and even take to our socials to have a good old vent about a nighttime hypo or a stubborn hyper, stealing those much needed hours of rest. sleep loss seems very common amongst the diabetes community, especially for those living with Type 1 but is it addressed enough in clinic? it it taken seriously by our HCPs?

You might remember my Path To Pumping journey (I really dislike "journey" it feels very X-Factory) and the many avenues which I explored to get the NHS funding I needed for a pump. The appointment which resulted in me gaining funding contained a conversation where I spoke about sleep. I detailed the frequent dawn phenomenon, the higher incidents of nocturnal hypos while on MDI and how, since using a donated pump, I have noticed far more nights of uninterrupted sleep. The good doctor seemed to take that information on board and it felt great to have an HCP grasp the importance of regular sleep.

Diabetes aside, I have a wonky shoulder (not frozen) due to Osteoarthritis - that can often make sleeping difficult, especially as I'm a "side sleeper". I've learned to manage that particular complaint although it still gives me a sharp reminder from time to time. Multiple complaints can make sleeping almost impossible - I know that from talking to some of you guys and the issues you face in that dept. With that in mind and with the well documented issues caused by sleep loss, I think it's important to bring the issue to the table at your diabetes reviews and why not? If diabetes is causing you any level of distress such as frequent hypos, hypers, burnout, depression, etc then you'll probably ask your HCPs for some help. Sleep loss should be acknowledged and given some attention.

What causes your sleep loss might be a single thing but you might be so conditioned to living with it that you haven't bothered to bring up the subject. For example; perhaps you're on MDI and you're having 15 nocturnal hypos per month. So, half of your nights result in broken sleep. I know that to be a thing for some of my peers and I'm astounded at their ability to function let alone go to work the following morning. The solution could be a simple tweaking of a basal dose or a change of insulin... or maybe you'll benefit from being on a pump? which could reduce your basal dose for you at those frequent hypo times - that's what happened to me and my relatively low nine hypos per 90 days has been reduced to five or six.

The result of more sleep is profound. The main difference for me is my mood. I have always been a pretty relaxed chap but since using a pump, since getting more regular sleep, I can't remember the last time that I felt irritated by any life events and I've had a pretty testing year or two! as I'm sure most of you have. Is that related to more sleep or more stable blood glucose? I think, probably both. They're definitely strongly linked.

Perhaps your blood glucose is generally stable while you sleep? Excellent! but maybe your worries over your diabetes keep you awake? Not so excellent. Can that be addressed? Absolutely! I think most of us have tossed and turned at night because our brains are all "You made an idiot of yourself at work 24 years ago". With diabetes, you're probably worrying about more serious things. Complications? I think about those from time to time, too. There are ways to ease those worries and you might benefit from talking to a psychologist. If that seems like a big reaction then I fully encourage you to openly express your concerns to the online diabetes communities. You will undoubtedly find some empathy there and perhaps some solutions. It is amazing how often peer support brings about a positive outcome! 

Sleep is a vitally important part of life and we shouldn't live with exhaustion unnecessarily. Talk about your own sleep loss and pursue a solution, I promise you will feel a million times better about life when you're well rested.

 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 

Time

Have you ever entered your diabetes diagnosis date into that online form, which gives you your estimated number of finger pricks, injections, etc? You get a nice little info-graphic to share with your peers to highlight just how many times you've pierced your own skin in the name of staying healthy. I seem to remember there are hours of sleep lost and estimated hypos, too. It's interesting, I guess, to see how quickly big numbers can build up and when you've racked up a good number of years with diabetes, those numbers become enormous.

Perhaps those numbers will be less of an issue, as more and more people seem to be moving towards technology to manage their T1D (and T2D in some cases). Changing a pump set around 104 times a year seems less impactful, and a CGM 26 times? Definitely less of a smack in the chops compared to 3500 finger pricks. The burden of diabetes is spoken about a lot and I still think that showing your burden in a simple info-graphic can help others to understand you and your condition better.

The burden of diabetes is a multi-faceted affair for me but the weight which hangs heaviest on my shoulders is time. That hasn't always been the case, though. Diabetes played a very minimal part in my life during my teens and early 20s. That is until it didn't and I woke up in a hospital bed or the back of an ambulance - it played a pretty big part, then. I've told the stories from those days on many other occasions, I won't bore you with them in this blog. Time, though! It's a precious thing. We're all born with a finite amount of it after all. It makes sense to make the absolute most of our time while we're still stinking up the place but diabetes just loves to steal those hours, days, maybe years from us. How can we minimise that lost time and maximise our life enjoyment?

I had to pause after that last sentence. I fear becoming some kind of life coach w*nker.

Let's look at the easy option; Ignore it. I don't mean completely ignore everything in regards to your T1D because you'll be struggling and gravely ill within a few days. However, doing the minimum by taking your injections, treating the inevitable hypos and hoping the hypers will go away by themselves. A terrible idea, I know, and exactly how I lived with the condition for far too long. I got off lightly, I could've easily died, you don't want to try this option. You may get away with it for a while until you don't.

A harder option; Carry on with your current management but adjust other aspects of life. You MIGHT find that works for you if other areas of your life are burdensome. So, work? relationships? toxic friends? bad habits? Cleaning up your life might be a good idea in general but it doesn't address the time burden of your diabetes and, it might be argued, freeing up more time from other aspects of life could allow diabetes to take up even more of your precious life - it's very needy like that! Pursue happy living as much as possible of course but this option feels like you'll be ignoring the diabetes time burden and will it eventually bite you on the bum? With a heavy period of burnout to follow?

A sensible option; Address it and find solutions. Start at the top! What's taking up the absolute most time in your life in regards to diabetes? Waiting rooms, probably! I jest. For me it was the finger pricking. I could see the benefits of frequent checks and I still check, today but far less often. The solution was technology. At that stage it was Flash and because I spend a lot of my waking life with a phone in my hand it was never an issue to scan a sensor - it still isn't! compared to foil wrappers, strips, lancets, prickers, meters and losing each of them at various points. Next, injections - I was injecting up to 8 times per day, pre-pump. It's time consuming stuff and, if you know me and my various limitations, eventually very burdensome. The gift of Pumpy McPumpface arrived and that burden was lifted alongside a stack of other QoL improvements.  I'm sure you'll have your own diabetes time burdens - feel free to tell me about them in the comments below or on social media.

The change from finger pricking and MDI to CGM and pump has had a profound impact on my life for the better. It also highlighted two things to me:

- Technology is a force for good and for living a better life with diabetes.

- Having more time means less burden (of course) which means less stress, which leads to great improvements in mood, sleep and general health. 

Tech won't solve all our time burdens. Hypos and hypers will happen, complications might happen, life events will always happen and they're famous for impacting negatively on diabetes! Sometimes there is little or nothing we can do but our best to get by. Others, however, can help to reduce our time burdens.

HCPs, primarily the decision makers, As your Clinical Lead has said many times! Don't block access. In the UK every T1D has the right to Flash or a CGM under the NHS. I'm astounded at stories of people being refused access to that technology even today. If your patient wants it then provide it. And pumps? You may have read about my fight for NHS pump funding (seriously time consuming!) Step away from the criteria, talk to the patient and find out why they need a pump. I promise that they didn't decide on a whim and that it takes a lot of courage to start that conversation. Even if their A1c is great, don't dismiss the idea because that's not great care. Great care considers personal circumstances alongside health conditions and A1c & TIR. Are you going to improve their long term outcome in life and not just their A1c? 

We all know that Looping will be the main treatment for T1D in the coming years and delaying access to the tech which facilitates Looping helps nobody but might hurt the patient. 

Friends and Family, You'll never fully understand T1D because, unless you have it, that's impossible. So, a great way to reduce our time burden is to not question our decision making, don't ask why we're hypo, try to avoid making us feel guilty if we woke you or asked you to help us. Talk to us when you have questions, of course but avoid 20 quick-fire Qs when we're trying to stop a severe low. Try to understand that a treated hypo doesn't mean we'll be our usual selves straight away. Our mood might change with our blood glucose level, it's probably not about you. Our medical appointments, although frequent and tedious, can be very stressful for us, try to avoid highlighting them as an issue and an inconvenience to you. Doing those things can help us to feel supported and less likely to explain, or even apologise for, each diabetes related incident. 

Peers, This one is super easy - Don't judge. That includes diets, exercise, lifestyles... everything! Don't offer negative remarks to another because they do things in their own way. It's never helpful! At the very least you'll look like a judgemental, mean spirited, bully. Live your own life, share your experiences, if somebody asks for advice or opinions well then is your chance to vent your splaining spleen. Shooting down an innocent peer can result in them questioning their management, make unnecessary changes and hiding away when they have a question and need support - all adding to their time burden of living with diabetes. Be the voice of encouragement and empathy.

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 

Some Time In The Sunshine

 

Here comes the sun, doodoo doodoo. In the mostly gloomy isles of the United Kingdom, the sun can be a rare sight - you've probably noticed, analytics tell me that 80% of you are from the UK. So, when it appears, it's understandable that many get a bit giddy about it... then a bit red and regretful. Remember your SPF50 especially you, my fellow sexy baldies.

The benefits of some sunshine are well documented, go ahead and Google it for all that research.

Why am I blathering on about the sun? Tell you about all the Twitter drama?! Where are the shallow graves?! Godammit get me The President! 

I know you've seen the tweet and it would be ridiculous of me to just ignore it and carry on regardless. So, a blog for a one time addressing of the issue and a bit more about the sunshine before my sunburned head gets too much and I change my mind.

I spelt out a few facts on Twitter, 3 or 4 days ago. What you've read there are "cliff notes" of what I have found to be a prolonged campaign of lies, accusations and a seemingly wilful ignorance of facts to cherry-pick things I have tweeted and touched upon in blogs. All of that through the very grown up method of sub-tweets and indirect references in a blog and who knows what else?! 

Alright, I'm an adult and I can handle the strange-strangers on the Internet. It's likely that most of you with a social media presence will have encountered a level of trolling and trash behaviour. The bigger your presence, the more gets thrown your way - them's the rules! All of that aside, what upset me the most, what really disturbed me was the stories from others. If I had hair, it would curl. In the interests of safety for my peers and to be respectful of their confiding in me, I am not going to document any of those incidents. There are lots and many pre-date my involvement in the #DOC and #GBDoc. None of those things are my business to pursue through complaints or authorities.

My business? Amid the screenshots and outrage from a mutual friend, an admission that I am/was being stalked. Although I am not directly mentioned, it seems clear that the date of the tweet coincides with something I said - If it wasn't me then know that you might be being stalked. Whatever, one of us is getting the stalky stalk treatment. Of course, I've kept that particular screenshot image which proudly states how friends are reading my published content to "report back" to the blocked account in question. Oh, I didn't mention that? Yes, blocked for 18 months following independent people making complaints about this individual over the year or so prior, to me. I already had them muted for that period and at no stage have I followed their Twitter account. A search showed some brief exchanges, several years ago - all seemed reasonable and polite. It appears this individual took my blocking poorly and so the accusations began. To the mutual, time to stop offering fuel to this unnecessary fire. I forgive you.

Trolling and "fly-by" abuse is one thing. I prefer that to the prolonged campaign from this individual - a campaign which has left me contemplating not only leaving Twitter but all diabetes social media. I rarely knee-jerk react to anything and some time away seemed like a good idea. I sought counsel from different orgs and friends with experience in harassment and the process of ending it. The support was tremendous and I now have avenues to consider, some of which might seem very dramatic. At this stage, with the dust settled, I am swayed towards doing the good things and putting my focus into positive activities around diabetes and in peer support. The prospect of the dramatic, potentially impacting very negatively on another person's livelihood and reputation doesn't hold great appeal especially as some time has passed and calm restored. And! Do you know what? despite it all, this person is a fellow T1D and if me not even trying is causing such stress and anger and paranoia then I think purposefully pushing could be disastrous. 

There it ends. And do please let it end, friends. Please do not start your own vendettas and make life difficult for anybody else. You're all better than that.

Sun, sun, sun, here it comes...

...today, I spent a few hours with my friend Carolyn to talk about some help I'm providing to her son, diabetes and the recent events. Talking is great therapy! and I'm grateful to have such amazing friends who have the calmest of minds. It was a beautiful day and the sunshine can bring a new perspective to life. My head looks like a blood orange but let's not get bogged down with who will be in agonising pain in bed tonight when I've topped up my Vitamin D and rediscovered some joy.

You read my last blog, didn't you? I pasted around 20 quotes from different people. That hasn't really touched the surface and in no way can I reply to everybody individually, I'm a slow typer! So, to you all:

I really appreciate your support and your concern has touched me beyond words. Thank you.

I'd like to highlight that many men offered me their time, probably with worries over my mental well being. Outstanding! I'm incredibly proud of you for doing that, fellas. It's that sort of reaching out which can stop harm and even save lives. Please don't stop doing that when you're able. There was little to no danger of me doing anything but that might not always be the case for me or others. Ladies, I appreciate you reaching out, of course. You've been incredibly kind. I am blessed with the strongest friendships and. sometimes, it feels like an army of Banting Juice Botherers has got my back...

...that is what you prefer to be called, isn't it? See you on Twitter, Drama Llamas!

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 

Your Words

 

For your love...

...I am forever grateful

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

Prefer PayPal?

BUY DIABETIC DAD (MSF) A COFFEE THROUGH PAYPAL