The Path To Pumping - Pt.2 The Gift

'Are you pumping already? That was fast!' Well, yes and no. No, as I write this but hopefully Yes within 24 hours of publishing and once this blog goes viral. What? I go viral! Some of my tweets get like... 8 Likes!

Welcome to Part 2 of The Path To Pumping. I've titled this one "The Gift" because that's exactly what you see in the photo above. I'm a firm believer in "Pay it forward", especially in relation to Diabetes. That's not because I'm trying to buy my way into the good books or affections of others. It just feels good to help others who need it. It's a great form of peer support and paying it forward can come from gifting or loaning equipment, such as a pump or just sharing your knowledge and experiences. This blog is also dedicated to my friend for making a monumental effort in gifting me this pump, one of the kindest and hardest working people you could ever meet. I am truly blessed.

So, how does this impact upon me getting a pump through the official NHS channels? I'm still following that route and the ball is firmly in the court of DAFNE. If you've followed some of my tweets then you might know that getting an appointment there hasn't been a smooth process. Following my Diabetes review and agreement to attend DAFNE as a gateway to pumping, a letter arrived in the post which invited me to make a registration appointment to find out about the course. K, can do. I sent an email to no response. After 2 days, I sent a follow up email, stressing that the clock was ticking on arranging this appointment and being appreciative of a soonest reply. The NHS letter stressed that I must arrange an appointment within 2 weeks. Sadly, no response. Perhaps emails aren't routinely checked. I still have a week until my deadline at this stage. I let the weekend pass and then I tried a phone call on the Monday morning and voicemail picked it up. I left my details and politely asked for a call back, again expressing concern that this is a time sensitive appointment as noted in the letter. No return call happened and I tried again at 4.30pm, around 7 hours later. No ringing tone, this time just straight to voicemail. I hung up, not wanting to leave multiple voicemails about the same issue. Tuesday arrived. Tick-tock. Just before midday, I called again and finally spoke to a real person! Apparently, she was going to call me back. We arranged the registration appointment (telephone) for late September. 

So, that's that. But, not really. After making noises on Twitter, it became apparent that education/training isn't necessary for access to technology. I shouldn't need my GCSE in DAFNE to be offered pump funding. The temptation now is to refuse the course, dig my heels in and start quoting NICE guidelines. But! I'm a Joe Bloggs Diabetic, the everyday chap with T1D who has walked in, off the street because he's heard that pump therapy might make his Diabetes management better, provide a better long term outcome and reduce his day to day burden. I'll take the course because that's what the Joe Bloggs Diabetic would've been advised to do, what I've been advised to do. What you may be asked to do. Not everybody knows about guidelines or the right people to follow on Twitter.

Enough DAFNE, for now. 

The pump!

Right, I've loaded my small and over-worked brain with information, I have support from friends and anonymous HCPs. I'm ready to go! When my Lantus isn't on board., which'll be tomorrow morning. Today, I'll be checking and double checking and probably Zooming with pumping friends to be sure that I'm not going to make an enormous balls up. Assuming all goes well and things are settled, in a few weeks or maybe months I will investigate Looping through this pump but that's something for the future. The now is for getting used to pumping and not injecting anything. The very thought of not injecting insulin is completely alien to me. I do that approximately 60 times a week. I've never smoked but I wonder if this going "cold turkey" from injections might be similar. Old habits die hard and all that.

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!

BUY DIABETIC DAD A COFFEE HERE

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!

BUY DIABETIC DAD A COFFEE HERE