Tuesday, December 21, 2021
Giving
Friday, December 17, 2021
Thirty Seven
Saturday, December 11, 2021
The Dawning Realisation - A Christmas Diagnosis
Thursday, December 9, 2021
Can I Go Home Yet? A Christmas Diagnosis
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! AND until Jan 1st 2022 I'll be donating all your kind coffees to various Diabetes charities.
Tuesday, November 30, 2021
Diabetes & The Vaccine Booster Hypo
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
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
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.Monday, November 15, 2021
Due Diligence
Friday, October 29, 2021
Peer Judgement
I did reply, later on but when I read that response I was angry. I was angry for others more than myself because I'm a man in my mid 40s and, after living a life with disability, I am almost numb to hurtful comments. I was angry for the newly diagnosed, the children, the impressionable, the low on confidence... I can't imagine how the teenager felt, after starting pump therapy recently, once they had read that response. How would you have felt? So, I didn't reply immediately. I retweeted the comment and invited others to share their views. It's a few days later, now and their tweet is still attracting replies. I think that underlines the strength of feeling and the general dismay.
What does pop up occasionally, if I've highlighted something which is horribly offensive, discrimination or possibly damaging to the health of others is the old "They're allowed an opinion" response. Sometimes dressed as freedom of speech and sometimes with a heavy hint of accusation with a #ThoughtPolice hashtag. Here's the deal; If a person responds to something you've done or said with words that express offense, that they feel discriminated against, that they're worried your words or actions could be damaging, then it's probably not for fun. It takes bravery for a person to call out these things. Then it's down to you to take a breath and consider if they have a point, was it a misunderstanding you can clear up or do you need to re-evaluate things? Perhaps even apologise!? I think everybody should be free to express themselves if that expression is not going to cause distress or damage to another person or persons. That would seem to be a reasonable, kind way to live and engage with others.
Words which struck a chord with me came from Dan Newman (@T1D_Dan) when the subject of harassment came up during an online conference. Dan said that if you read something which you don't like then simply block that account. He's right. You're not obliged to respond to anybody and your only duty on social media is to that of your own well being. You may be questioned, I certainly have been, about why you've blocked X, Y or Z. You don't owe any explanations to anybody. Do all your social media in a way which is comfortable for you and not others.
It seems that peer support could be a part of your Diabetes care through the NHS in the future. To the decision makers, the leaders, I encourage you to tread carefully by vetting each person you enlist, reading their social media and asking others for thoughts. If you offer somebody a job then you ask for references, don't you? and to everybody else online or otherwise; Stranger danger.
Tuesday, October 26, 2021
The Path To Pumping - Pt.6 Somebody Like Me
Sunday, October 17, 2021
Diabetes & Pain
Friday, October 8, 2021
The Path To Pumping - Pt.5 Permission
I think that it's pretty safe to say that you do not get to live a life without seeking permission to do something at some stage. Perhaps permissions are sought more when we were younger, as we learn rights and wrongs, then we might seek permissions more as we start employment - reducing as we mature, move up the employment ladder. becoming parents, financially independent and ultimately adopting the "with age comes wisdom" stance as we reach seniority. Perhaps. Of course, life moves in different directions for us all and a host of different things will affect what permissions you seek and from whom. So, that's a generalisation.
Diabetes doesn't escape permissions. IF we do certain things then other things are possible or, at least, safer. If you're running a high blood glucose and you're hungry then you'd probably give yourself permission to only eat that slab of cake if you inject or pump some insulin into your body. Probably.
Of course, we can and do by-pass permissions in life and Diabetes because we're wild and just won't be told (kidding) or we know enough at that stage in life and in OUR Diabetes to no longer need the go ahead from another person or a group of people. We know the right answer and sometimes we just grab the bull by the horns and ride that bovine wave.
By now, you've realised where this blog is heading. Since writing my Path To Pumping blogs, there has been lots of discussion on Twitter, WhatsApp and even in my Inbox around the subject of pumping and mostly how to get started with pumping. As an NHS patient, it boils down to permission.
Many who have expressed an interest in pumping to me have queried where to start. It's never been an option, they didn't like the idea until recently, they didn't realise they could reduce their burden, they couldn't afford it! The list is surprisingly long. I've tried to encourage each to start a conversation with their Consultant. It could be that you're eligible under the current NICE guidelines and the NHS are obliged to start you on pump therapy. In that case, great. You're good to go and good luck! For the rest of us? We're going to need some permission.
Your Consultant may tell you that you're doing "too well" and that you don't need a pump. They might be right! But if you're going to dramatically change your insulin therapy, learn something new and quite scary & be brave enough to speak up about it in an often intimidating situation then they're probably wrong. They're probably using this positive refusal technique because your HbA1c is under 8.5%. Clever, isn't it? the old positive refusal. Did you ever end a relationship with "It's not your fault, you're great, it's me, you can do better..." to soften the blow. Maybe you've had a positive refusal for pump funding and it was so good that you took to social media because your HCP told you how brilliantly you were doing? Maybe that's just me.
So, what happens after you're refused? I mean, the nice Consultant was really kind and complimentary. Perhaps you should suck it up. Until you can't suck it up any more. Hurray! You've reached Burnout level. This is where things get worse for you until you eventually reach that 8.5% A1c and the Consultant is less complimentary. By that stage, you may not be in the right frame of mind to move to pump therapy. You might not be in the right frame of mind to do very much in regards to Diabetes. Then you might need psychological support, maybe counselling, and a pump, which you might or might not use correctly because your mind is a frazzled, deep fried, lump of lard at that stage. Things could get expensive for the NHS from then on in and become a worry for you and your long term outcome.
I'm sorry if that last paragraph reads a little gloomy. Imagine being my Consultant!?
Let's just touch on that 8.5% thing a little more then I'll let you go and demand new things from your own D team:
That is a criteria you must meet for a no questions asked agreement to start pumping (alongside having no hypo awareness and hopefully not dying from a hypo hospital admission). If you don't meet it and you're sure that pump therapy is for you then look up the ABCD recommendations for pump therapy. Do you meet any of those? Dawn phenomenon? A splash of hypo fear, perhaps? How about some other QoL issues? If they apply to you or anything else which is a solid reason for you to switch to pump therapy then "No" is not an answer to accept when you start the conversation. You have options, there is help in exploring those options.
Sometimes you'll wait a while for permission. A patient patient is a good thing. If you do find that your wait seems to be a little long then do drop me a message. Everything can be hurried along and even a Joe Bloggs Diabetic, like me can reach far beyond the initial gatekeeper.