Peer Judgement

I've been a vocal advocate of peer support within Diabetes for a long time. It would be strange, in my position, to not be. The list of support, help and friendships offered to me has been incredible and I'll be forever grateful.

Alongside my peer support gushing, I have been deliberate in my attempts at trying to warn others about the potential pitfalls of engaging with peers within Diabetes circles. The ugly side of peer engagement rarely sticks its head above the parapet fortunately but it is there and as more official avenues of care begin to recognise the positives of peer support, I think it is very important to have a firm safeguarding and vetting procedure in place to at least minimise, if not eliminate, the possibility of damaging engagements between people living with Diabetes.

The Internet is a wild place. Anybody can create accounts and spout all kinds of hate, extreme views or health damaging advice.

"He's clearly not using the technology correctly..."

"Perhaps his grocery bill would be lower if..."

"The truth hurts" - A personal favourite of the peer judges.

Those three came from one person, a person who lives very locally to me and who (at the time) was claiming to be an active volunteer for Diabetes UK. He wasn't a volunteer, of course and it became apparent that he had aired his views about others' Diabetes management across social media resulting in various bans and outrage from other peers.

I think the great thing about Diabetes Twitter is the unquestioning welcoming and support of new people. I hope that remains because we were all newly diagnosed and frightened, once. I hope that remains despite the recent welcoming of an individual who claimed to be a student nurse, recently diagnosed with T1D. Tonnes of love and support from various quarters arrived in his life. At the same time his true colours became apparent. The colours of a racist, ableist, liar. The Twitter community noticed and large numbers were quick to express their displeasure before turning their back on that person.

This week, I passed the two month mark in my pumping journey. It's been great and I felt very encouraged by the real life changes as well as the improved numbers. I tweeted my numbers for a comparison to my life as a Diabetic on MDI. Much positivity followed until this reply:

"So clearly not worth having such an unsightly pump?! What gets to me is how damn ugly & unsexy all related to diabetes is!"

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. 

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!

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The Path To Pumping - Pt.6 Somebody Like Me

You may have heard from De La Soul that 3 is the magic number. Not in Type 1 Diabetes circles if you're hoping for NHS support for pump therapy.

A lot has happened since the last The Path To Pumping blog. I think it's important to recognise the great things first and, as usual, the great comes from the community of GBDoc, NIDoc and IREDoc on Twitter. I've reached the stage of forgetting who has sent what, helped in which way or just been there to support my words. It is truly remarkable to me, to have such generosity sent to my door or handed to me in person. I try to be gracious to each person and convey my profound thanks for their help and each person has simply seen their actions as nothing, not a problem, some citing that I do a lot to help others when I really just do what I think is the right thing - and I really enjoy it! I've written many tweets and blogs containing "Thank yous" now and I'm running short of words. Thank you! to everyone who has helped me to this point. I have enough pump consumables to keep me going until December, perhaps longer if I reuse some cartridges.

Peers, as you may have realised, are happy to support what I'm doing. They live the condition 24/7 and they relate and feel my words. They recognise the importance of reduced burden, better sleep, no dawn phenomenon, lower anxiety, more head space... and on the list of things goes. What's not on that list? Numbers.

Trigger warning: Self harm

Ah, yes. The magic numbers on which we as Type 1 Diabetics are judged. Still, albeit with less of a judgemental tone (we can put that to the test in due course). Because page 1 of the "Type 1 Diabetes for Doctors" book is all about HbA1c.

For Abbott, the Flash Mob, the Libre Lovers, during a Webinar the very well qualified have noted that an A1c of 6.5% is optimal regardless of MDI or pump therapy.

The nice folk at NICE believe that an A1c of 8.5% or higher should mean a mandatory offering of pump therapy through the NHS.

Boffins at a Swedish university believe the "Goldilocks zone" for A1c is 6.5 - 6.9% regardless of MDI or pump therapy.

Then there are us; the 7% - 8.4% gang. The cool kids, perhaps? walking the tightrope over a drop into the chasm of complications, hoping to stay on the line and not drop into the abyss. And we're told "you're doing great" if we ask about switching to a pump (remember positive rejection?)  and to "keep at it". Yet, there they are - The Abbott Webinar professor, the Swedish boffins, talking about A1cs beginning with 6 and the mind wonders just how great are we doing in the mid 7s? What help can we get? You're not switching to pump therapy, not in my area, that's for sure! You'll be working with the tools that MDI can give to you, assuming you have any capacity left to do that work. Or, fingers crossed! and you carry on as usual with the "doing great".

Complication risks grow exponentially over 8% HbA1c, with each increase in 1% HbA1c. I'm sorry if you're nursing an 8%+ right now. You're not guaranteed anything! So, keeping things under 8% is a great idea, right?

Right! Deep breath. So:

- We need to keep it under 8% to reduce those complication risks

- Under 7% but not under 6.5% if you subscribe to the Swedish data.

- 6.5% if you're digging Libre Webinars

There seems to be murky water, here. For such a heavy clinical reliance on HbA1c, the 7% - 8.4% folk don't seem to be brought into the conversation a great deal. Is the risk of complications so dramatically lower at 8.4% vs 8.5% (NICE for pumping) or 7.9% vs 8%? My own blood glucose data tells me that things rarely travel in a straight line. I'm sure there is a nice, curvy, A1c vs Complications graph, somewhere.

It's difficult to escape the numbers if you're hoping to start pumping through the NHS. I get that. I really do get that individuals who are struggling to get their A1c under 8.5% need more urgent care than somebody like me, who floats around the 6% and 7% areas.

Somebody like me. Somebody who used to have higher A1c numbers, somebody who has suffered eye complications, somebody who has engaged and got to grip with his Diabetes, somebody who (in recent times) has noticed his A1c creeping up, his TIR dropping, his burden increasing, his near-avoidance of injecting because he's just so damn tired of the endless process seven, eight, nine, ten times a day. Somebody who knows his own body and own mind and recognises the dangers of where things are heading.

Somebody like me, who isn't in need of urgent care but is in need of care because somebody like me really doesn't want to go through eye complications hell again. A hell which I've only partly spoken about because my peers have enough to worry about. I promise, you don't need all those details. 

Could the risk be worth it? I have enough tools and data to stop pumping, today and begin what would in effect be self harming myself by purposefully running high enough to achieve an A1c of 8.5%. Then I'll get the care that I know that I need. That care is NHS supported pump therapy. Of course, there is another criteria for pump therapy from NICE; hypos. The same thing could be achieved by having a couple of severe hypos, perhaps resulting in hospitalisation. The risks of trying a controlled hypo are far more immediate but probably equally as silly as trying to run high for 90 days. Don't do it. 

Where next? There are options, none of which involve manipulating my Diabetes in the two very silly ways above. I could press harder and talk to people in more senior roles but is that the Joe Bloggs Diabetic route? Probably not. Joe would likely seek the advocacy of charities. How much weight their influence carries is debatable but without trying who knows? Another option could be to seek care from a different area. I live close to the border of different counties and different CCGs. Perhaps an area many miles away would be more sympathetic to my needs. I'm chewing over those options as I type this blog. There is no immediate hurry to decide what to do but, as always, your thoughts are greatly appreciated. Leave them below or tweet me!

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!

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Diabetes & Pain

Apologies for the rather dramatic image. Imagery which represents pain is not an easy thing to find unless a scrunched up face is your go-to. It has been a pain to find a suitable photo. Not as much of a pain as Diabetes. 

If you read or publish your own stuff on the Internet, perhaps via social media, then you've probably engaged with somebody who has had an "ouch" moment. You've probably experienced several, yourself. That's life, right? We experience pain because our brain is telling us something is wrong and to warn us that we're possibly damaging ourselves. We avoid pain because it's unpleasant. Yet with Diabetes, specifically Type 1 in my case, pain appears to be an acceptable part of the day to day management of the condition, at least in it's physical sense.

I've been thinking about some of the pain which I've experienced from near 37 years of T1D.

Those first few days were brutal, as an 8 year old boy. The guillotine-style finger pricker might seem like a horrendous looking thing to use, these days but when compared to a manual prick from a ward nurse it was very welcomed! The finger pricks became the first thing that I became conditioned to. They still hurt of course and they still hurt today! But something doesn't really register as a pain, eventually. Perhaps the brain knows what's coming and it's all; 'Okay cool, another finger prick, have a drop of blood.' I think finger pricks, today are relatively low on the pain threshold. Pricking devices have advanced, we can pre-determine the depth of the prick (stop laughing) and lancets seem very good compared to those of the mid 1980s - assuming you change them. You do change them, right? 

In the early years, needle tech and information wasn't great. I remember those syringe needles being pretty big and getting used several times. Little wonder that my injection sites were frequently bruised. I remember it took 3 or 4 days before I no longer needed a team of HCPs to hold me down for my twice daily jabs. Now, of course, injection technique is a thing. Needle length is a thing and single use is definitely a thing. Injections still hurt but far less than the early days. I think the advancements in injection tech and knowledge have reduced the pain in that area. 

Recently, I've started pumping (you may have noticed) and that means a different type of pain; cannula insertion. I prefer using an insertion device, some prefer manual insertion. Either way, you're going to insert a needle and cannula into you and withdraw the needle while leaving the cannula behind so you can pump insulin in. I've only ever done this to myself, no HCP has helped or advised, although for the first two insertions I had the help and patience of a friend on Zoom. I found manual insertion to be more painful than using an insertion device. That might be because I'm slow and deliberate rather than fast and zappy. It's generally the same pain level as a syringe or insulin pen needle injection but I have found the after sting lasts for a little longer. In addition, boluses can sometimes feel "a bit stingy" although I've found that to be site dependent. 

Ah, technology. A wonderful thing. It still hurts. I'm currently using GlucoMen Day CGM and that is the least painful CGM that I've used to date. No guide needle helps to minimise the skin trauma. When it's in, it's in. It probably hurts more to remove the sensor because the adhesive keeps it so firmly attached.

Libre? Possibly the more painful of the glucose devices, for me. Although, again, that is somewhat site dependent. I have found the upper thighs hurt the least and that is the same for every Diabetes tech device which I've inserted there. Have you got a favourite site?

Adhesive? My advice is to choose a not-very-hairy site on your body. Some of that stuff will give you a tiny area of your body a free waxing as a part of the deal when you remove the device. Ouch.

T1D means that the possibly of Diabetes related complications can be a thing in our lives. I'm going to talk about the one which has impacted upon me. I recognise that there are many others and you'll all have your own experiences if complications have visited you. 

Diabetic Retinopathy wasn't a very painful experience. Changes in the eyes and even bleeds don't tend to be painful. The treatment and additional complications have been. Laser treatment in clinic was uncomfortable with moments of moderate, stinging, pain but if I had to go through that again it wouldn't unduly worry me in regards to how much it's going to hurt. Deep laser, done in theatre, was more uncomfortable. That involved an injection to numb the eye and a period of  soreness for several days. I hope that you'll never experience those things but if you do then please just do it. It's really not awful and your eyesight is worth it and more.

Speaking of more. A vitrectomy?... or two. That's a more invasive procedure and you'll need a GA rather than a local because you really don't want to be awake for that. Post-surgery resulted in a headache and eye pain which grew in intensity. Eventually, drops and Tramadol calmed things down enough for me to stop praying for the merciful release of death. What followed was 2 weeks of soreness and posturing. Posturing is not fun. It involves being face down for 50 minutes of every hour. EVERY hour. to protect the retina. So, 4 weeks of my life, I spent looking at the floor, pillow, sofa, etc and that is no party for your back and neck. And that's how Diabetic Retinopathy gave me a bad back. 

There is more and I've saved the best/worst until last. Ocular Hypertension. The gift of retinopathy kept giving some 3 years after my last surgery. It started with a very mild, niggly, headache. I took a couple of Ibuprofen and tried to carry on with my day. Within a few hours I was unable to look at a screen and beginning to worry. By the early evening I was already in bed and despite trying different painkillers, nothing was working. At that stage, I began to vomit from the pain and the debate of when or if to go to hospital was had. There is an emergency eye dept right besides my usual eye clinic. They opened at 8am and I decided that it would be better to present there, rather than general A&E and potentially being admitted. I was sure this was an eye related issue and nothing more sinister and that spending the night on my hands and knees, because that was the most comfortable position, and crying quietly was best done in privacy in my own home.

Eye pressure is "scored" just like your blood glucose. A normal range is something in the teens. My right eye was 14. My left eye, my agonising eye, was 48. I was lucky to present at Eye Casualty at this time as one of the nicest, most experienced eye surgeons was in the building. I will never forget the compassion and clear explanation given to me by Mr Kowatowski. Within 30 minutes I was on IV drugs which began to lower the pressure in my eye. The relief was tremendous and from that and probably not having any sleep for 24 hours, not to mention the worry about my sight, I had another little weep. 

My words probably do not carry enough weight for the pain which I felt from the high pressure in my eye. It is by far, without a shadow of a doubt, the single most painful thing I've ever experienced. I've had a broken rib, twisted ankles and a biopsy on my tongue. None of those are in the same league as Ocular Hypertension. So, when you see me encouraging my peers to attend their eye screening appointments, it is for good reason.

Pain relief is something which affects us, as people with T1D, too. Tramadol is a strong pain killer but it has been noted to cause hypos! Co-codamol, which you might be prescribed for a frozen shoulder (I was) is a strong one, too and although it never caused me any blood glucose issues, it was really difficult to wake up of a morning. Naproxen gets commonly prescribed but that can cause stomach issues. And then, of course, Paracetamol and Ibuprofen - they might work for mild pain and don't appear to have any immediate effects on my Diabetes.

Physical pain as a result of Type 1 Diabetes appears to be inevitable, from the very common, mildest and briefest of stings right up to the insanity inducing agony - which I truly hope is a rarity.

Mental pain is another issue, a very important issue, which has only recently begun to be recognised amongst HCPs in Diabetes. I'll blog about that on another day. Until then, tell me about your physical Diabetes pain. Leave a comment below or catch me on Twitter.

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!

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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. 

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!

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