Sunday, January 1, 2023
Taking Diabetes Advice
Wednesday, May 18, 2022
The Path To Pumping - Pt.9 Trials & Tribulations
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.
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Thursday, April 28, 2022
Diabetes HCP Anonymous 1 - DSN Guest Blog
It's hard. Being a DSN right now is becoming really tough and some of us are at breaking point. The issues are complicated and come from many directions but the main one is Covid. You've probably felt the delays or a shift in your care due to the pandemic, as a patient. We understand your frustrations and we are trying our best to get through the backlogs. Many of us have been faced with very distressing issues, as really poorly people with Type 2 Diabetes are coming through to us following two years of seeing nobody. As you might imagine they need urgent care and referrals to other areas, all of which take up lots of time and resources. We're getting through things but it's going to take a while to until we see some sort of normality again.
I know that Paul has a large following of PwDs with Type 1 Diabetes and that you're all excited about the new availability of technology and the new NICE guidelines. I also know Paul to be a great champion of technology and an advocate for better access but I must offer some hard truths. Despite what you may have read, simply asking for a CGM will not result in you getting one immediately.
Some of you are asking for Libre 3 which hasn't been released on to prescription yet, to transfer a patient to that requires the filling of a 10 page document - a very time consuming process when the demands come from hundreds of people. There is also no iPhone option for Libre 3 and no reader so it's only suitable for Android users.
Elsewhere, I've seen requests for Dexcom 1 which has no sharing function, no predictive alerts and isn't yet available to prescribe. The Dexcom G6? That's still not happening unless the patient is hypo unaware. If you want a Dexcom and you have hypo awareness then you'll be directed to Dex 1 which is much inferior to a G6. Other options have been brought forward but there are huge question marks over quality and a lack of sharing with HCP options means the patient is left to manage their own data without our support.
Despite what you may have read on Twitter, the new guidance is a mess for us. It would've been helpful if these stumbling blocks were addressed and fixed long before the changes were announced to allow us to make changes easier. There is a push to bring these changes forward quickly, an undertone of "it's easy, NICE guidance, etc" but each device which isn't on prescription requires us to fill out 10 pages of information in a form called an IFR. There simply isn't the staff to cope with the current levels of demand much as we want to help everybody right away.
Some of you, like Paul, have been fighting for access to pumps. The same issues are true in that area. Demand has increased because of the Looping trials and increased positive exposure through social media. Of course, to Loop you'll need a CGM and a Pump and the training. That's a lot of time and staff resources for us when we're already at breaking point. It feels like we're moved too quickly, tried to run before we can walk, and the result is going to be huge delays for patients. I'm working my socks off, I promise, because almost without exception I believe you guys deserve the very best care and technology that we can offer.
I'm sorry to have disappointed any of Paul's readers. What you read on social media, highly praised "Gods of technology" don't live up to the hype very often despite the roles they hold in regards to tech access at various orgs. If the senior HCPs won't or can't bend the rules to allow easy access then how are we mere mortals supposed to?
Thank you for reading my Guest Blog. Please leave your thoughts in the comments below.
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Monday, February 1, 2021
Shares in Diabetes
Diabetes is certainly a long term investment. Selling out would be great, wouldn't it?
Sadly, this particular deal is locked in for life. Unless, of course, there is a cure in around... oh, shall we say 5 years?
I can already imagine that you're reading this and demanding to know what this blog is about. Shares? in Diabetes?
Like the FTSE Check 100?
Or the Low Jones!
Maybe it's going to be something related to Pharma and their Banting Juice businesses.
No. What I'm going to write about today is the sharing of information in regards to your diabetes. The passing of tips, the screenshots from heaven (or hell), the freely offered resources you have stored in your brain from your diabetes experiences. Perhaps your HbA1c! Eeek!
I think it's all marvellous. I think it's really useful to hear about the experiences of others but not to compare myself or make myself feel like a failure because somebody had a better day than me. It's great to read about the successes and the tone of excitement in a tweet when the sender feels good about how they're managing their condition. I love that! and I take huge encouragement from A1cs which are lower than mine, TIRs that are higher than mine and people living great, long lives with Type 1 Diabetes.
I know sharing isn't for everybody. I know some take things very personally. I can't offer much advice if that relates to you, only that Diabetes is an endless supply of good and not-so-good times. Everybody has had an awful day but not everybody will tweet about it.
I TRY to offer both sides of my Diabetes "coin". I tweet about the good days, the awful days and everything in between. I tweet about the things that I shouldn't do, such as reuse my needles and lancets, much to the eye-rolling of the DSNs.
I won't apologise for that and I won't change. I do actually change my needles now, I mean I won't change what I choose to shares. I do my best to be a real diabetic. I do my best to give my honest views about diabetes. I... just do my best, as I'm sure many of you do. There is no such person as the perfect diabetic.
So, take on board as much shared information as you can. Don't try to emulate anything without proper medical advice. Don't be afraid to offer your views or your experience. You'll be surprised at just how many people you're helping.
Talking of sharing experiences! How do you fancy earning an extra £80 for a quick telephone call? I'll let Anne from QualWorld explain:
We are conducting a market research study among young people (16-20) and carers of children with T1D that would like to share their experiences of living with T1D. We would like to hear from carers of babies, toddlers and children up to the age of 13. Teens between 13 and 15 have the opportunity to participate together with their carer or under the supervision of their carer and express their own opinion, but carers can opt to speak on behalf of their 13 to 15 year olds if they wish to do so.Participants will receive £80 GBP for a 60 min telephone interview.
To take part just visit: http://tiny.cc/r5b8tz
For information email: anne.verbeke@qual-world.com