NICE Guidelines

mashedupmatt

mashedupmatt

Well-Known Member
Relationship to Diabetes
Type 1
Apologies - a bit of a rant - I'm so pleased for everyone here who is on a pump and/or HCL - I've heard some wonderful stories of how it has essentially changed your lives - I'm so pleased it has done this and long may it continue - My annoyance is at the lack of tech for people such as myself (OK I might be being a bit selfish!) - My HbA1C last time around was 52 - so 6 away from getting access to this tech - I find MDI a real headache (as I'm sure everyone else does) and really think that it's a bit unfair that I am being denied access to this potentially life-changing tech because my control is working well ATM - appreciate the cost factor, but it is very frustrating - Rant over!
 
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mashedupmatt said:
Apologies - a bit of a rant - I'm so pleased for everyone here who is on a pump and/or HCL - I've heard some wonderful stories of how it has essentially changed your lives - I'm so pleased it has done this and long may it continue - My annoyance is at the lack of tech for people such as myself (OK I might be being a bit selfish!) - My HbA1C last time around was 52 - so 6 away from getting access to this tech - I find MDI a real headache (as I'm sure everyone else does) and really think that it's a bit unfair that I am being denied access to this potentially life-changing tech because my control is working well ATM - appreciate the cost factor, but it is very frustrating - Rant over!
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Hey @mashedupmatt I’m sort of in your “boat.” Been messing with this MDI for decades. Decent HbA1c. At the end of the day as I take it. The reality is an overstretched institution being “played” by misleading over optimistic boasts on Twitter by someone indulging in the “clout.” It is what it is. My wife currently has a colleague diagnosed with cancer. Despite a “healthy life style.” It don’t look like this is one that can be walked away from? The way things are. I’d rather see some “hope” tossed in that direction?
 
mashedupmatt said:
My annoyance is at the lack of tech for people such as myself (OK I might be being a bit selfish!)
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"Lack of tech"?! We've got CGMs prescribed to (in England) 97% of people with Type 1 (last I heard, I'd guess it's higher now)! And those of us who use the right insulins have smart insulin pens, which fixes annoying issues where you don't remember whether you injected a dose (or don't remember exactly the dose) and allows recording of all doses without the tedium.

The main issue with HCL is staff: even if the NHS had lots of money for the hardware there'd be significant prioritisation for getting people on HCL just because of the need for suitable DSNs. And we're obviously not the priority: much more sensible to offer it now to people who already have pumps (because that should be easier), children, people who're pregnant, people with high HbA1c and those with significant hypo issues (even with CGMs).

They've barely started the rollout to the priority groups. I don't see a reason to think the rest of us will never be offered HCL. It'll just take a few years.

https://twitter.com/x/status/1667814561334845441
 
If it’s any form of solace. I once bumped into another Libre wearer on a dance floor on a night out. We briefly chatted. (I am out with my wife she’s cool.) chatted BGs lol the pumper she pitied me for not being on the regime? (That always grinds my gears.) we exchanged graphs. (Like “mood rings in the 1970s?) hers was all over the place. Managing a high. (From memory.) Mine was level in the 5s. I don’t think it’s all it’s cracked up to be?

Bruce Stephens said:
"Lack of tech"?! We've got CGMs prescribed to (in England) 97% of people with Type 1 (last I heard, I'd guess it's higher now)! And those of us who use the right insulins have smart insulin pens, which fixes annoying issues where you don't remember whether you injected a dose (or don't remember exactly the dose) and allows recording of all doses without the tedium.

The main issue with HCL is staff: even if the NHS had lots of money for the hardware there'd be significant prioritisation for getting people on HCL just because of the need for suitable DSNs. And we're obviously not the priority: much more sensible to offer it now to people who already have pumps (because that should be easier), children, people who're pregnant, people with high HbA1c and those with significant hypo issues (even with CGMs).

They've barely started the rollout to the priority groups. I don't see a reason to think the rest of us will never be offered HCL. It'll just take a few years.

https://twitter.com/x/status/1667814561334845441
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Another member I respect along with @mashedupmatt (hello Bruce.) they just can’t get the staff these days. A little oversight from the professor. He ain’t omnipepressant.
 
mashedupmatt said:
Apologies - a bit of a rant - I'm so pleased for everyone here who is on a pump and/or HCL - I've heard some wonderful stories of how it has essentially changed your lives - I'm so pleased it has done this and long may it continue - My annoyance is at the lack of tech for people such as myself (OK I might be being a bit selfish!) - My HbA1C last time around was 52 - so 6 away from getting access to this tech - I find MDI a real headache (as I'm sure everyone else does) and really think that it's a bit unfair that I am being denied access to this potentially life-changing tech because my control is working well ATM - appreciate the cost factor, but it is very frustrating - Rant over!
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How much hypo-avoidance rigmarole do you engage in @mashedupmatt

Do you ever have hypos? Most likely the answer to that is yes. Do they crop up at irregular and inconvenient times? Does this irregularity mean you think about them a lot, worry about them happening? Are they tricky to avoid entirely despite your best efforts at adjusting your doses in line with meals, exercise, illness and so on?

My reason for these question is that NICE regard someone thinking about hypos frequently, and being worried that one might occur at an inconvenient time (eg right... I have to get to the train station now, then walk to that meeting... better take some fast carbs now... and reduce my lunch dose... can't risk drifting low just as the meeting starts... blah blah blah) as being constantly worried about hypos and them having a negative impact on quality of life. Which meets the TA151 criteria for pump therapy. The strongest evidence for pump therapy is hypo reduction, not HbA1c improvement.

And once you are on a non-hcl pump, and also have a CGM sensor it's a simpler ask to get them to swap you to 2 versions of the same tech that talk to each other. Plus you'd have experience of 'manual pumping' which is a massive help when switching to looping.
 
mashedupmatt said:
Apologies - a bit of a rant - I'm so pleased for everyone here who is on a pump and/or HCL - I've heard some wonderful stories of how it has essentially changed your lives - I'm so pleased it has done this and long may it continue - My annoyance is at the lack of tech for people such as myself (OK I might be being a bit selfish!) - My HbA1C last time around was 52 - so 6 away from getting access to this tech - I find MDI a real headache (as I'm sure everyone else does) and really think that it's a bit unfair that I am being denied access to this potentially life-changing tech because my control is working well ATM - appreciate the cost factor, but it is very frustrating - Rant over!
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At my recent training course for my area they were telling us about the pumps and the funding that was coming along with who they were prioritising first and what the criteria was. I'm very interested in the pump but at the moment my control/last Hba1c 48 libre estimate wouldn't qualify me currently. I just fall out side of the age range they primarily looking at on boarding first as well. I've casually mentioned it in my current check's in they've never said no per say but not yet though. I'm just nearly a year diagnosed and have spent a lot of time self learning and dialing in my ratios/routine to get my control to what it is now

So hopefully in the future
 
everydayupsanddowns said:
Which meets the TA151 criteria for pump therapy.
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I think there's general agreement that the implementation of TA151 failed pretty badly and there are lots of people who should qualify but who've never been offered a pump. I also doubt that any healthcare team is looking at TA151 now, so as a practical matter I think you'd want to point at TA943 with maybe a mention of "I think I'd even qualify under TA151".

(It's also quite possible I'm mistaken. I've not really tried to get a pump.)
 
Bruce Stephens said:
In the draft of the HCL TA, the HbA1c cutoff was 64. Because that was the average that pump users achieved. Some people (more women than men) just have a harder time of it.
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Always apreciate your balance. My HbA1c meets the NICE guidelines for good control. Which seems to rule me out. How I achieve “that,” is another matter. I wouldn’t say the “how” affects my quality of life. The sensors help & the wrist readout is fantastic. 🙂 (after decades without.) I’ve been told I don’t seem to be getting many hypos from the graphs by my team. Back to the How? Dispite basal testing, knowing my I.CR, all the other stuff. The lows I get are the ones I let slip.
Bruce Stephens said:
(It's also quite possible I'm mistaken. I've not really tried to get a pump.)
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I recommend you try it sometime. I express interest in a pump to my team & there is tumbleweed with uncomfortable silence. They pretty much call, “check please?”
 
Satan’s little helper said:
I recommend you try it sometime. I express interest in a pump to my team & there is tumbleweed with uncomfortable silence.
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In my area, people with diabetes normally don't see the hospital team unless there's some specific reason. When I first did (because I was having serious problems with hypos) one of the first comments they made was that I wasn't likely to qualify for a pump. There were lots of things to try with MDI before that.

I think there's no chance I'll qualify until the criteria change (or unless something really significant changes with my diabetes). (Likely the criteria will change in 2026.)
 
Bruce Stephens said:
In my area, people with diabetes normally don't see the hospital team unless there's some specific reason. When I first did (because I was having serious problems with hypos) one of the first comments they made was that I wasn't likely to qualify for a pump. There were lots of things to try with MDI before that.

I think there's no chance I'll qualify until the criteria change (or unless something really significant changes with my diabetes). (Likely the criteria will change in 2026.)
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I feel you are right. It’s always, “keep doing what you’re doing?” I do see an endo once a year. But it’s just a formality. Other than asking for a pump for “chicks & giggles,” there isn’t much else to discuss. Hope you had help with your hypos?
 
Satan’s little helper said:
Hope you had help with your hypos?
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Very much so. Changed insulins so I got a much more stable basal insulin, then was taught carb counting properly, and (while they couldn't at the time suggest it) started self funding Libre sensors (obviously those became prescribed). So I stopped having so many hypos (including overnight) and my awareness returned.
 
Bruce Stephens said:
(It's also quite possible I'm mistaken. I've not really tried to get a pump.)
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Well my feeling was to go pump first.

Since the NICE definition of ‘Disabling Hypoglycaemia’ in TA151 extends to what I see as a very common experience of “hypoglycaemia is an ever-present worry once I aim for the recommended HbA1c, and I have to think about it / worry about it / work around it constantly, because if I don’t I would hypo A LOT, because: T1 Diabetes”.

You don’t have to be having multiple Severe Hypos with paramedic call-outs to meet the definition in TA151.

The HCL guidance was necessarily framed to target those who would gain most benefit.

The pump guidance may give @mashedupmatt another way in?
 
I asked for a pump jut to see what would happen. Mainly cos it would be nice to not be woken up at night. They denied thst there was any critera but said my 2 unit basal would make it difficult to run a pump.
Not sure what i really think about a pump. I would probably snack more, and i'm not sure i trust my sensor quite enogh to let it do its hcl thing.
Part of me thinks at east mdi is quite simple and you don't go dka suddenly due to 24 hr basal.
I used to be dead against the idea...things attatched to ones body, tubes etc, but with cgm you get used to the idea..prob prefer a patch pump mind you
 
@Tdm why are you waking up at night and why do you think a pump would stop that?
Are you thinking of HCL making corrections rather than a “stand alone” pump?
Regarding DKA with a pump, I think this is much less likely now with the use of CGMs (even if they are not talking to the pump) to alert when BG goes high. I think we are a long long way from pumps being something you can totally ignore 24 x 7.
 
@Tdm Don’t get your hopes up re an undisturbed night! I had to get up at 4am last night to change my cannula due to a bad site. Pumps are clever but the cannulas/sites are the weak link.

I don’t see why you couldn’t have a pump with 2 units basal. At one point I only took 5 units basal on a pump and some of my basal rate hours were 0.00 units of insulin. I think people assume a pump is like some irritating backpack or ‘thing’ drawing attention to itself 24/7, but in reality I don’t notice my pump at all and sometimes have fears I forgot to re-connect it :rofl: I’ve always used tubed pumps. I’d knock a ‘patch’ (it’s not a patch, it’s a ginormous lump!) off in five minutes.
 
Inka said:
I don’t see why you couldn’t have a pump with 2 units basal
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My thoughts exactly!

The ability to have no basal when you don't need it, but basal exactly when you DO need it would be ideal I reckon? Rather than having something that's trying to last 24 hours, but is too small a dose really.
 
everydayupsanddowns said:
My thoughts exactly!

The ability to have no basal when you don't need it, but basal exactly when you DO need it would be ideal I reckon? Rather than having something that's trying to last 24 hours, but is too small a dose really.
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You make sense to me. I need little to no (possibly suspend for 4 hours?) basal at night myself when active during that time. Depending on activity. Rather than “sugar surfing.”
 
Satan’s little helper said:
You make sense to me. I need little to no (possibly suspend for 4 hours?) basal at night myself when active during that time. Depending on activity. Rather than “sugar surfing.”
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My overnight basal requirement has always been lower than daytime I think. Especially the randomly occuring 10% of nights when apparently I need next to none. Thank goodness for auto-suspend!
 
Thank you so much for all your replies - you've all definitely given me a lot to think about - I do have hypos and do get very anxious regarding them particularly at weekends when I am very active - tend to over carb before exercise and then have a massive low afterwards so have to over-compensate again, before eating again - a real rollercoaster - so it's worth me mentioning this to the powers that be - I'd definitely like to try a pump to see if that helps - really appreciate all of your input
 
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