Diabetes HCP Anonymous 1 - DSN Guest Blog

Post-Covid, the demands on HCPs in the UK have grown to unprecedented levels and Diabetes care has not escaped the turmoil. As an active member of many Diabetes circles, I have been fortunate to learn about the current situation faced by many of our hardworking HCPs within the NHS. Some of their stories have horrified me and given me a new perspective on life "on the other side of the appointment". I have offered my blog space to my HCP friends as a safe space for them to air their views anonymously. 

Welcome to the first of these Guest Blogs, written by a Diabetes Specialist Nurse.

Dad.

I love my job - I just need to get that out there before I open up to you about the current climate for people like me, working for the NHS. I work with some incredible people and the PwDs who I've met have been the most amazing, strong and stoic individuals. 

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.

DSN.

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

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BUY DIABETIC DAD (MSF) A COFFEE THROUGH PAYPAL 

The Cure

 

I should publish this blog post on a Friday because, you know?! Friday I'm In Love and all that. Fortunately, this post isn't about 80's bringers of cheer, The Cure. No, we're talking T1D cures because, like all good Diabetes bloggers, I'm a topical content whore.

You've probably noticed some of the chatter following the £50 million donation by The Steve Morgan Foundation jointly to DUK and JDRF (UK). If you missed it then it looked something like this:

Steve & family spoke about the donation on BBC Breakfast alongside charity reps and social media got giddy. Rightly so and, do you know what?! it was lovely to see some positive words and hope from the online community. Not that we're a moody bunch but, in general, we do usually have more to complain about than celebrate.

So, it's £50 mill over 5 years. "5 years" ? Sounds familiar but this time there is a firm sense of hope. I truly hope this is the tipping point, the seed, which sprouts a cure in the years to come. It is a hugely generous gesture and as a Diabetic who is nearing middle-age, I will be delighted for those with less miles on the clock than I, as well as the lifting of burden for myself, should the news break.

£50 million, eh?! You could nearly buy a footballer for that! It does beg the question, has a lump of filthy lucre been the issue since Day 1 of research beginning? I know that charities are always asking for funds but has one big hit been holding everything back? That would seem like a terrible shame for those who have lived with T1 for many years, those who are no longer with us because of the condition and those, like me, who have been touched by complication's frosty grip. Perhaps that's something for a later date. Until then, boffins get boffining! Bring us good news and if it takes 5 years then I'll get Steve Morgan's face tattooed on my back.

Speaking of tattoos! I'm screwed. You've seen the one on my arm, right? I show it off at every opportunity because I think it looks cool and I'm proud of overcoming my hiding of the condition and letting it dictate my life to me. Now it belongs to me, that's what the tattoo shows. And it's kinda useful if I'm unconscious and the medics spot it. What do I do with that? I'd probably add "Former" above it and "See back for details" whereupon you'd find Steve's face. Yes! I think that's a plan.

Back to curing. A cure is a subject which I've avoided for a long time. The trash in newspapers and on the Internet has left a sour taste in my mouth when it comes to that discussion, yet it's a valid subject. You might argue that it should be the primary subject until it's found as it would eliminate everything else we deal with in relation to T1D, complications from living with it aside. As I sit and smash my fingers into the keyboard for this blog, I find myself drifting off for a moment to imagine not having Type 1 Diabetes... it's weird! How do you freaky non-diabetics do it? Eating without bolusing? I mean... WTAF! I don't know if I could do that, man ;-)

I guess that now we wait. I'm closing in on 4 decades of waiting. Some of you far more, some of you very recently began marking time for a cure. I encourage all of you, no matter where you are on your T1 journey, to never give up hope on a cure. Until then, push for what you need! CGMs, pumps, insulin, appointments in the flesh, etc. Keep those HCPs busy because if a cure comes they're going to miss us.

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 

As A Man...

...talking about Diabetes and everything related to it has become easier for me, since embracing the condition, but it's not easy and after checking some stats I'm pretty sure that I'm not in the minority.

Before we get into full-swing, thank you very much if you've donated a coffee or been generous in your tapping of ads on my blog and vlog. As you might know, all the funds generated from that are donated to MSF - who do incredible work in places like Ukraine. See the bottom of this blog post for how you can help.

That's my beardy mouth, above. It's the end of the Easter weekend and I've adopted a relaxed approach to shaving. It was also an easy way to represent the mouth of a man, what with me being male and owning a mouth. Let's not focus too much on the photo! Instead, I've been considering how to word a blog post in regards to men's Diabetes - specifically how we're largely crap at talking about it.

What comes with a moderately popular social media account is the ability to analyse stats on a moderately accurate level. The bigger the number, the more accurate the data and all that so, moderate is probably about right when it comes to my socials. Cool, well... I think so! I know some aren't interested in numbers and their own voice is what is most important when it comes to Tweets and the like. I think numbers, analytics, offer a great insight into what's going on, what people are interested in, maybe even what's going wrong.

I've long suspected that my engagement on Twitter has been tilted towards women. I've never been entirely comfortable with that as there are predatory men who may have a similar tilt. I've spoken about it and openly questioned why male to male engagement in regards to Diabetes is less common - for me, at least! I certainly don't go out of my way to avoid men or to tweet/post replies to females more than males. Yet, my engagement is weighted towards women. I know that after checking the analytics of various involvements and by manually going through my own data since the turn of 2022. The figures? 68% of my engagement is with women. Yet, I know that my socials in regards to follows and friends are split very evenly - almost 50/50 as best as I can tell, sex isn't always apparent after all.

Mrs Dad has quipped; "It's because you're funny and charming and they all love you". I disagree, I'm not that funny. 

More seriously, others have noted that women are more open in regards to their health and talking about it, and that a man being "as open as they are" feels safe. That may be true, at least in part, women do seem to be happy to talk about their Diabetes with anybody. If I'm as open as the women within the Diabetes communities is debatable. Personally, I think not.

So, that's me and I'm not happy with that situation. I'm very much about equality, true equality, the lifting up of the down-trodden but not the knocking down of those on a higher perch - We should all be on that lofty footing. With that in mind, I've decided to make a bigger effort in finding and talking to more men within the online communities, to encourage their engagement and to lift them up to the high standards set by women. Why? Because talking about my Diabetes has brought huge improvements into my life, it has allowed me to learn from others, to form friendships, to have a large peer support network inside my phone which means I can ask for an answer to any Diabetes question and feel confident of being given it. Why wouldn't you want that in your life, men? 

Is it because you fear looking weak? Do you somehow feel less of a man, less in control, less attractive by opening up about your health when it's troubling you? That nonsense is what has put many of us in the ground too soon, for... forever? And now we have the Internet! You can be anonymous, pretty much and post a tweet without any fear. Or you can go a step further, grab a hold of your balls, tell the world who you are and what your issues are. Own it and be the inspiration for the next generation to talk openly about their health. 

I'm not ending this post with the standard "My DMs are open". That's fine if that's your thing but it'll change nothing. Seriously, how many of you have tweeted such a thing and been inundated with messages? Change comes through being active. So, if you are active on socials and notice an ignored person (male or otherwise, probably male) then reach out to them and start a conversation. You could help with something which is really simple for you but result in a dramatic improvement in their well being. Sometimes, a person just needs to know someone is listening. It can be that easy.

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