Showing posts with label pump therapy. Show all posts
Showing posts with label pump therapy. Show all posts

Friday, November 25, 2022

Upgrade

A blue keyboard key with the word Upgrade written on it in white

I wrote a tweet, a few days ago, where I mentioned my new insulin pump set up appointment. It's been a long time in the coming. You may have read some of my Path to Pumping blog posts, which began in 2021 and ran into this year. I'm still on "The Path" but the finishing line is very much in sight. It's been a journey, only matched by reality TV contestants as they reach the final stages before returning to a life of obscurity, and I'm delighted to finally be moving on - on to a new NHS funded pump and consumables and a reassuring warranty. 

The tweet? Yes, I noted that the upgrading of Diabetes tech is a strange, almost emotional, affair. Not at all like upgrading a phone or a TV. I thought nothing more of it yet, the tweet got a surprising amount of Likes and some offered their thoughts which seemed to be in agreement. Fantastic, I do enjoy social media engagement. However, that particular tweet must've reached more eyeballs than I thought and, following a few messages and emails, I'll be talking to Diabetes UK's Balance magazine on Sunday to discuss the subject of T1D and tech & upgrades.

The subject has been bouncing around in my brain since agreeing to the interview. The words of others have found my "hard relate" button. I don't know of any other technology to have had such a profound affect on my life. A car certainly changes a person's life, affording us more freedom, and if you pass your driving test at 17 then freedom is a huge thing! But, if I didn't pass my test, didn't get a car, then I suspect my life would've gone in a similar direction - probably less nipping out for a takeaway! Indeed, I haven't driven for 12 years and I've got by thanks to various other drivers. Really, that's as close as other technology has got to matching diabetes tech for me and it's still a million miles away.

I think the subject underlines just how much I value my health, today compared to the the years gone by and also how incredibly important access to this technology is. I've seen the data for things such as HbA1c and Flash / CGM use, there are likely similar numbers kicking around for insulin pumps and, lately, looping. The cold, hard, numbers are important but they don't give the full picture. 

Technology has reduced my T1D burden beyond how I can express it in words. I feel that it's reduced it to such an extent that I don't have the T1D that I used to have. It does't feel like the full condition, now. Don't get me wrong, it's still absolutely crap on many occasions but not nearly as much work as when life was full of injections and finger pricks. I've noted many times; I'm blessed. My fund raising for Action 4 Diabetes and learning about their work in South East Asia has really underlined to me just how blessed I am.

The pump switch over is on Monday afternoon and I'm really going to miss this little black chunk of plastic and metal and battery. I've upgraded my CGMs, moved to different ones, taken CGM breaks, etc many times in the last 5 years but since starting on pump therapy I've remained on pump therapy. That'll be 15 months without an insulin injection. I've grown to love the pump. It's on my person all the time unless I'm taking a shower, we go on walks together, meals out, it's met my friends and I spoon it to sleep at night. Next week, it'll be safely back in its box with the battery removed. Another will take its place and do the same job in keeping me alive and well. Soon after, I'll say goodbye forever as the old pump is sent to another living with T1D. I promised to pay it forward and that's what will happen.

Not exactly a tear jerking moment, I know. It's a great moment for me and the next person to use the old pump. Paying it forward is a great thing, too. If you do find yourself in possession of spares then try to not let them waste away. There is nearly always somebody else who can use your old tech or consumables so pass them on... oh! and don't go profiting from it. I know some have sold pumps and fair enough if you bought it in the first instance but, if that tech came from the NHS then please give it back so they can use it to train staff members - assuming you know of nobody who you can pass it to for free. 

Upgrading diabetes tech is so different to upgrading our home technologies, our cars, the machines we use at work, etc. None of those will likely improve your health, I suspect very few of them wake up with you in the morning and it's unlikely that you'll get the opportunity or have the inclination to pay them forward.

 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!

Wednesday, May 18, 2022

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 

Friday, January 7, 2022

Gotta Wear Shades


I don't HAVE to wear shades but doesn't everybody look cooler while wearing sunglasses? That's me, in the photo, outside the Bellagio in Las Vegas, almost 8 years ago. This blog isn't really about sunglasses, I promise.

Firstly, huge thanks to everybody who supported my December charity blogs. They raised £90 for Diabetes charities - all the money has already been sent, take a look at my Twitter timeline for a detailed breakdown. Perhaps I'll do something like that each year because it's good to give.

I'm doin alright, gettin good grades, the future is so bright, I gotta wear shades. Do you remember that song? It still gets thrown around from time to time when things are looking promising. In the world of Type 1 Diabetes, in the UK at least, things do seem to be looking up. On a personal level, things are pretty good as well.

I'm doin alright

The numbers suggest as much. My eA1c is floating around 6.6% and my Time In Range is in the low 80% area. Numbers are just data so, that aside, I'm happy to confirm that I actually feel pretty good, too. Better levels of sleep because of fewer Diabetes related interruptions is certainly a life changer. That and no feelings of being overwhelmed by injections have certainly put a shine back into life. Those things are down to me using an insulin pump, of course and you know that because you've already read of my gushings for the last 4 months. If you want to switch to pumping then I encourage you to start the conversation with your Diabetes team. At this point, I am still refused NHS funding for pump therapy and I've taken my foot off the throat of decision makers in that regard - I'll explain why at the end of this blog, keep reading.

Gettin good grades

TIR, eA1c, Hours slept... there are probably others, too but the numbers are looking good and if T1D is judged on such things then the grades are looking pretty nice.

Future is so bright 

Possibly. A bright future involves access to all available technology to all who can benefit from it. My data shows the benefits to me but that's not enough to satisfy the current NICE criteria for pump funding. I've written about why the criteria isn't fit for purpose and is causing individuals to self harm to achieve an A1c which would make them eligible for pump therapy. That's not a route which I'm going to explore but I will keep talking about it because it's obviously very wrong and potentially very damaging to the health of people living with T1D. 

A bright future involves the scrapping of the current NICE criteria for pump funding. Good try, folks but delete that and start again. You can do better. Aaaaaaand it seems that might be happening. I await the news of NICE criteria changes, later this year. March, perhaps. Of course, if it still pushes individuals to self harm then my noise will increase and I will submit to the requests to talk about it through more public sources than my little corner of the Internet. The coming months will be very interesting indeed and I do hope the future is incredibly bright for everyone living with T1D and not just for some, for some things.

I gotta wear shades

Because, as established already, shades are cool. It's important to remain cool and calm in most situations. If you're fighting off a hypo or struggling to reduce a hyper then I've always found things seem to move more smoothly if I just take a breath and stay calm. Perhaps stress and anxiety can affect BG? Of course it does! as it can affect other areas of your life. So, rather than press harder for pump funding I am going to do nothing apart from wait. I'm going to put my faith in the decision makers to level the playing field, faith in HCPs to facilitate access to technology and look for reasons to make it happen rather than reasons to refuse and faith that the current use of a donated pump will hold out long enough for me to not be worried about the day it dies - because I'll be granted NHS pump funding and a warranty for the tech I'm using. The shades are on despite it being January, freezing cold and dark at 4pm. The shades are on because I'm cool and calm and patiently waiting for the right things to happen.

Happy New Year.

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!
 

Thursday, November 25, 2021

The Diabetes Technology Revolution


Welcome, Comrades. It's another blog about Diabetes tech because you haven't been inundated with news of it through your socials. Of course you have and it's been fantastic news! If you've missed it, in short, T1Ds in England and Wales are set to be given NHS funding for CGMs and some T2Ds (on insulin) are set to be offered NHS funding for a Flash Glucose Monitor.

The gates aren't being kicked down just yet. The above seems likely to go through in the March of 2022 because the behemoth that is the NHS and NICE aren't exactly agile in directional changes. Cool, fine, okay. 

The news doesn't really impact upon me. I'm one of those lucky social media types who are offered CGMs in return for reviewing and talking about functionality. I'm delighted for my peers, especially those who don't get along with Libre because of accuracy issues, adhesives, etc. I do hope that the CGMs on offer are varied, however. Having used several in the last 4 - 5 years and having spoken to probably thousands of other users, it seems apparent that different systems work better for some than others. I don't know why that might be but I've certainly noticed some monitors aren't within my personal parameters of acceptable accuracy and comfort. Recently, how environmentally friendly these devices are have become more of an issue - I've been talking about that since the summer of 2020 so, that's nice to see and it will be fascinating to watch how the different companies react.

Type 2 Comrades on insulin, how happy are you? I really hope that this news is the start of a more level playing field for you guys and you're offered equal respect and reduced stigma because of this and future developments. 

Are we really now heading into a full on Diabetes tech revolution? I saw Libre as the first step on that ladder when I first began using it, despite it's questionable accuracy, a few years ago. And now we're here - on the verge of total CGM access, no need to be under 18 or pregnant or both. Looping trials are seemingly progressing well. Type 2s are now at the party. Perhaps there'll be a cure in 5 years!? Hahaha. Sorry.  I think we are and we're right in the middle of it. The drivers of change must be thanked for that because even if this is as far as it goes for the next 10 years it will be a huge advancement in care and undoubtedly improvement in the long term outcomes for Diabetics.

Vive la révolution!

Where next? You've read this far without me mentioning NICE pump therapy criteria. But! budgets, tax payers! but there are people who need it more than others! but this, that and the other. I'm done with buts. If I wanted buts I'd be a colorectal doctor. Where there is a problem, there is a solution. If the problem is money then the solution is to obtain more or reduce spending to balance the books. But where from!? - Read the above about "buts". I'm happy to work on that solution for a very reasonable salary. If the problem is the current NICE criteria, and it REALLY is, then revise it. Just today, I've been told of others who have purposefully let their blood glucose run high to obtain pump funding because of the NICE criteria. Let that sink in. I know that I've briefly spoken about this before but now others are openly approaching me to tell me of such occurrences. That's self harm. In the short term, you risk DKA and possibly death. In the long term, you increase your risk of Diabetes related complications. Self harm and risking awful health problems to obtain something which should reduce those horrible things happening in the first place. 

So, today I'm calling for the scrapping and revision of the NICE criteria for NHS pump funding. It is not fit for purpose. Not only is it unfair and far too stringent, it is resulting in real harm in the real world and that is shameful.

 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!

Sunday, November 21, 2021

90 Days on an Insulin Pump



The 90s were definitely "my era". At the beginning of that decade, I was a schoolboy. Ten years later, I was engaged to be married. Everything in between was magnificent; the friendships (some of which still exist today), the nights out, the loves, the football, the TV, the Internet became a big thing and the music... Wow! the music. Of course, many reminisce about their teens and early adulthood and remember things through rose-tinted spectacles. Why not? Holding on to good memories can't be a bad thing. So, the 90s were important to me but you didn't come here to read my autobiography. 

90 days on an insulin pump has become incredibly important to me, too. I'm not sure I would swap the entire 1990s for this experience but it's up there with life changing events. 90 days is often the window used to monitor T1D management. Your HbA1c, TIR, hypo events and all the usual MOT bits and pieces get the once over by your HCPs for that period. I have some data because of using a CGM, some of that looks like this:

- Time in range: 82%

- Estimated HbA1c: 6.8%

- Hypo events: 7

 How does that compare to Multiple Daily Injections? I have some data!

- Time in range: 63%

- Estimated HbA1c: 7.5%

- Hypo events: 9

I am delighted by the improvement in the numbers, of course but they are a second, a distant second, to something more important. Something which, once we've accepted that Type 1 Diabetes is here to stay, becomes something we might strive for; a good quality of life.

QoL will differ from person to person because we all lead different lives. For me, it means reasonable levels of sleep, to not feel overwhelmed at the prospect of another injection, to wake up without Dawn Phenomenon ruining my morning, to be able to bolus for meals in comfort in public, to have more confidence in so many ways... to feel, dare I say, a step closer to being a person who does not have Diabetes. A baby step, perhaps given that I look like Robocop. Your move, NICE.

Ah, yes, NICE. Guidelines, criteria, a tax funded system. I know, I get it. Tax payer funded healthcare must have a criteria for various things which could impact upon the purse. So, unless you meet the current insulin pump criteria, you're going to find NHS funding hard to come by. Your health and wellbeing is secondary to the bottom line, sorry. That's the harsh reality of where we are with insulin pump access in England. All the noise and enthusiasm about Looping trials is super but you can forget Looping unless you're on an insulin pump and for that you need to meet the NICE criteria. A1c under 8.5% and on MDI? suddenly all the exciting Looping headlines don't look so... exciting.

"Keep asking"

"Keep making noise"

Oh, I will. Earlier this month, I reached out to my practice nurse and GP in regards to my switch to pumping and the barriers I am facing in getting full NHS support for it's long term use. We did have a nice exchange and I feel very supported by primary care but, of course, there is little they can do to change the decision of secondary care. Secondary care are understanding to a degree but their hands are tied by NICE criteria and a limited budget. Frustrating, eh!? This isn't a Path To Pumping blog, it's a little overview of the last 90 days, so I'm going to stop this particular subject in this paragraph. Needless to say, we are not done.

A few things have cropped up in other discussions, lately. Some questions which I can actually answer!

How does long acting insulin work in the pump?

It doesn't. The pump continually "drips" fast acting insulin. That becomes your basal. You don't notice it happening as you might not if you've ever had a drip in hospital. Your pump is programmed to give you the insulin you need, hour by hour. For a bolus, you ask it for more!

How are you rotating sites with your pump and CGM?

Legs! Although I have plenty of abdomen to work with. The CGM is a "set and forget" thing for 2 weeks, the pump cannula can then be moved around that. The pump works perfectly well on a thigh, by the way.

Are you going to Loop?

Once I have obtained NHS pump funding and Looping is embraced across the board, maybe! I know some are Looping and have more lows than me but similar numbers in other ways. I will, undoubtedly, try it. It seems inevitable and I expect numbers to be the same or better but the more important QoL will be ramped up another notch.

One of my patients mentioned your switch to Fiasp and Pumping in their appointment!

Good! Apparently, I'm an "Influencer" but I don't try to be. 

It seems that my switch to pumping has gained a lot of interest from my peers and various HCPs. As always, what works for one does not necessarily work for all. However, if you think that pump therapy might work for you then please do start the discussion. Noise will change things for the better for us all. The squeakiest hinge gets the most oil.

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!

Thursday, September 2, 2021

The Path To Pumping - Pt.3 The First Week


Whoa! What a first week it's been with my pump. Time has flown by and so much has happened, even progressed, since the last blog. Let's get into it.

Firstly, huge love and thanks to all my friends and peers within #GBDoc. I have been inundated with support and advice from seasoned pumpers, loopers, HCPs and curious MDIers. Sometimes, I feel there is a hoard of big hearted people who have my back and who can relate. It really does swell my heart and I doubt that I could ever repay such kindness and support.

The first week! So, no (or very minimal) insulin on board, on Wednesday morning I interrupted @Julesbhrh from celebrating her birthday month to supervise my first cannula insertion and to get started with pumping. Doing that over a video call is not easy! especially without a COB (coffee on board) and with a rapidly increasing blood glucose level. It took a while, as most things do in your 40s, but we got there with my CGM reading 17.4 mmol/l. Icky, right? Previously, a Novorapid pen correction would take several thirsty hours to bring me back from the brink. Not so with Fiasp in the pump. After 30 mins I was nudging the happy zone and I could even plan my lunch and pre-bolus. What a great start!

 The first 3 days proved to be a continuous stream of surprise and delight. Fiasp was working beautifully and is extraordinarily fast, I had begun to adjust to sleeping with a pump attached, my TIR rocketed, I wasn't overwhelmed at all, no injection fatigue, fasting BG numbers leading me to question if I'd been cured by the Cinnamon Fairy, overnight. Apart from a kinked cannula, which taught me that when no insulin is going in I will become hyper very quickly, it's all been smooth sailing.

Can I brag? Just a quick brag. Between Saturday evening and Tuesday afternoon, my TIR was 100%. What in the name of Banting's Balls! I've had two 24hr TIRs in 4 years. That's almost 3 days in a row. Yeah, it's gone well. I've since managed a full set change without supervision and I've grown confident and comfortable with the pump.

Of course, it can't end there. I'm not in this for a quickie and then back to pens. No way, Amigo. That means I'm going to need consumables and Fiasp on prescription. August, it seems, is a popular time of the year for annual leave within the NHS and I'd chosen a Bank Holiday to reach out to my HCPs. To their credit, I was replied to on the Tuesday morning by email and had a telephone call in the afternoon. Outstanding stuff. See! HCPs from UHL, I can be kind and give credit where it's due. No need for patronising DMs or to block me or unfollow me. There is nothing to fear. Meow! 

I digress, what did the HCPs say about me going it alone? "We've never had this before" made me happy because who wants to go to work and deal with the same thing each day? A really good discussion with my Consultant and DSN lasted for around 30 minutes. The great news is that Fiasp is happening right away. Beyond that, I have been referred to the Pump Team and a certain Professor who some of you will know from Twitter. No, Partha relax, it's not you. At that referral, I hope to continue the good, honest, dialogue with that team and work towards full pump funding.

While I'm waiting for that referral to arrive, I'm hunting for consumables and I've opened an account with Roche and Accu-Chek. I've been given permission to buy my own consumables, lucky me. It appears that the items I need will cost around £120 per month, that is excluding VAT. If I want to use an insertion device for my cannulas then that's another £25. Yikes. Hi Americans! I can relate... a bit. Some kind folk have sent some supplies to me for which I am hugely grateful. I'm looking at you @NanaNeylin and of course the world's hardest working person @Moodwife

And that's where things stand, today. I'm delighted to be pumping, amazed by the numbers, hopeful that the pump team will agree that funding makes sense and most of all I'm determined. This will happen. 

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!

Tuesday, August 24, 2021

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!