Update on the HCL criteria

[Lily123]

Fair point, 4% a year though? That’s a lot. TA151 doesn’t seem closely followed at all, a 5 year rollout is amazing if they can make it workable

 

[Bruce Stephens]

But then, not entirely sure i would want a pump...cos i am happy on mdi and there is the risk of dka if your pump breaks...

I don't see why one couldn't use basal insulin alongside a pump. So take (say) 50% of what you need for basal as normal basal insulin and have the pump do the rest. That would presumably provide a bit of protection against DKA while not being too annoying? (Actually I'm pretty sure some people do do that. I'm just a bit surprised it's not more usual.)

 

[Bruce Stephens]

Fair point, 4% a year though?

I'm pretty sure it's 3 or 4%. Which is a lot. (I do wonder whether some of that's because of better diagnosis of adults, but I think people would have considered that.)

 

[Tdm]

You can snack when on MDI. It was certainly something I used to do every day when on MDI.

I know, but you have to inject ...plus injecting after a certain time means possibly being woken up in the night with alerts

 

[helli]

I know, but you have to inject

When I started (caveat: this was some time ago and advice may have changed), I was told I could eat up to 10g carbs between meals without injecting. I think I turned into a squirrel with the amount of nuts I was munching on with little impact on my BG.

 

[trophywench]

That's reminded me of yet another thing the doc said to me at my last review. She'd commented that my HbA1c was well within target blah blah. A1c was 54. I said, I haven't actually been informed what my target is, for quite a number of years now - so what is it? and she replied immediately (and very very firmly like every other word she uttered) 58!! in an exasperated tone. (Oh, pardon me for asking, it is my business whatever you think, madam!! - said my brain)

 

[Bruce Stephens]

I said, I haven't actually been informed what my target is, for quite a number of years now - so what is it? and she replied immediately (and very very firmly like every other word she uttered) 58

How interesting. I wonder if they have default targets which vary by age? (Which I think would make sense.) NICE suggests 48 and my GP is fine with low 50s (I think she's fine so long as it stays about the same). (As far as I remember once you get to low 50s you don't get that much benefit from being lower.)

Or was 58 once the target and your doctor still uses that? (Or some combination of that and other factors.)

 

[helli]

I wonder if the doc confused HBA1C recommended guidance with "clinical practice" targets.
I only suggest this because Google directed me to this paper: https://www.nice.org.uk/Media/Default/Standards-and-indicators/QOF Indicator Key documents/NM141-diabetes-guidance.pdf

"For the purposes of general practice indicators, 3 separate clinical practice targets are available: HbA1c 58, 64 and 75 mmol/mol (NM141, NM96, NM97).These targets are higher than the lower level recommended by the guidance, which may not be achievable or appropriate for all people."​

From reading (scanning) this, my understanding is that we should aim for 48 (unless we are on dialysis) for our personal health but the clinic is measured on how many people achieve better than 58.

 

[rebrascora]

My consultant is happier if I say I will aim for low 50s as I get too many hypos in the mid-high 40s. That said, I am personally happy with my management in the mid 40s and since Libre reports me as hypo far more often than I probably am and those hypos I have are relatively mild in nature, I tend not to be as concerned as he is about them. I find hypos easy to deal with and I get to eat a treat, so what is not to like.... apart from the odd one that makes me feel rubbish. High BGs for me are incredibly stubborn and frustrating and can lead me to rage bolus and usually involve several stacked corrections, so lots of sticking extra needles in me, even without being tempted to rage bolus, so not pleasant. For me, proactively managing my levels below 10 is just easier but I am well aware of the risks of losing hypo awareness, so I do or course try to avoid them and I adjust my basal accordingly on a very regular basis to try to prevent them. That said, I don't fear hypos like I used to and I have confidence to deal with them and I now sleep very soundly all night as a result, even if I am occasionally slightly hypo most of the night.

Personally I would not thank you for HCL or a pump, just like I wouldn't thank you for an automatic car. I am happy with my manual controls and Levemir works so well for me, I would not want to say goodbye to it.

I am however really pleased that HCL will be more available for people who would want to benefit from it.

 

[PhoebeC]

People often say it takes quite a lot of work to get a pump working properly...can't help feeling that people who have sussed out mdi are likely to be the ones who would make pumping a success.

But then, not entirely sure i would want a pump...cos i am happy on mdi and there is the risk of dka if your pump breaks...
But the, the flexibility of being able to snack, and also suspending basal to excercise....

Another point of me would point to the fact i'm 1 year 8 months on from my diagnosis and i still haven't been offered dafne, so not sure how the nhs would cope with training lots of people up on pump.

Good former child diabetics get to keep it! A step in the riht direction, and a reasonable way to start!

I have never had dafne. I am having the pump version later this year, over a few weeks so I will be nearly 18 years in before I have completed official dafne.

 

[Bruce Stephens]

I am having the pump version later this year, over a few weeks so I will be nearly 18 years in before I have completed official dafne.

It's easy for us to be missed. I only got on the local not-DAFNE course after around 30 years (and it was apparently the first time they'd run one for people not recently diagnosed).

 

[rebrascora]

There was a lady on my DAFNE who had been diagnosed 50 years and a guy who had 15 years in and then 4 of us relative newbies so a decent mix, which I think was useful.

 

[PhoebeC]

It's easy for us to be missed. I only got on the local not-DAFNE course after around 30 years (and it was apparently the first time they'd run one for people not recently diagnosed).

I wasn't told about too many hypos leading to reduction in hypo awareness by a medical professional until over 10 years in either. I think everyone just thinks you will be told at the start. I never was. I read it in a book and have then seen it 100s times here.

 

[Bruce Stephens]

There was a lady on my DAFNE who had been diagnosed 50 years and a guy who had 15 years in and then 4 of us relative newbies so a decent mix, which I think was useful.

It's quite likely that my local team had run courses with a mixture of experiences. The one I went to was entirely people who'd had T1 for years, and I think that's what was new for them.

 

[T1Nick]

There's an element of that, sure.

I think it would make complete sense to include everyone using a pump now that can become part of an HCL: they should be offered whatever's necessary. (Apart from anything else, that group ought to be cheap since they've already got the expensive bits (the pump and a CGM) so why not just round that off?)

I think you could also make an argument for some money for teams to offer HCL to people who're doing well but are keen to try one (who're presumably likely to be easier to support than average and are likely to be able to offer useful feedback).

But if you want to make a more general argument for money I think you have to go for people who're struggling. (I think diabetes distress ought to be a criterion too. Perhaps it will be but it wasn't mentioned.)

I had an interesting discussion with my Consultant on this at our last appointment. Actually she introduced it! She said that, as I'm already prescribed both CGM (Libre 2) and a pump (Omnipod) there shouldn't be ANY additional cost to the NHS for me to be put on HCL (which I'd love to try). I said the the likely recommendation of only offering it to people with HbA1C >7.5% would discount me, however she said that, if there's no additional cost that criteria would be waived. She then said that the only reason for me to need to wait is that an HCL between Libre and Omnipod wouldn't be here until the end of 2023 when the Omnipod 5 is launched apparently.
If she's correct it would appear that, as long as you already have a pump and CGM on prescription and that the specific manufacturers are developing or have developed an HCL, a pro-active Consultant should be able to organise it for you. I will be keeping a close watch on this!

 

[Tdm]

If i took 10f carbs without covering with insulin i would go high...i used to be able to do it, but either i stopped producing my own insulin as much or i got a bit tighter with targets.
Its probably best not to snack, anyway. Though i do snack on babybels...not the same as biccys, though, is it?

 

[Eternal422]

I have never had dafne. I am having the pump version later this year, over a few weeks so I will be nearly 18 years in before I have completed official dafne.

I have never had Dafne, but that’s in part because my initial diagnosis was T2 and only years later changed to T1. I did ask my DSN recently about it and she said as my control is good and I’m not saying I’m struggling with anything there would be little clinical need for a course, but it’s there if I ever ask in the future. To be fair my current hospital team are really good and have helped fill in some of the gaps due to not having had any formal instruction previously. I suppose we all learn a lot ourselves as we go along and there’s nothing quite like real life experience to build up your knowledge.

 

[rebrascora]

I suppose we all learn a lot ourselves as we go along and there’s nothing quite like real life experience to build up your knowledge.

Except possibly comparing notes with others facing the same challenges. I think one of the main benefits for me was spending a whole week with other Type 1s and being able to talk about all the aspects of it that affect us differently. The beauty of DAFNE is that you learn from each other and for each other so you can spot and potentially problem solve someone else's issues so that if you come across different issues in the future you will have a framework to guide you to a solution. It was a bit like a very intensive session on the forum here. You learn such a lot from each other.
That said I don't really follow any of the DAFNE principles I was taught but then I don't eat "Normal" as per the Course Title and I break pretty much all the rules like correcting between meals and stacking corrections and correcting under 10 and even counting carbs these days, but I don't regret any of the time I spent on the course as it gave me greater understanding of diabetes.... and it got me Libre.... eventually....although it still took the best part of a year!

 

[Bruce Stephens]

If she's correct it would appear that, as long as you already have a pump and CGM on prescription and that the specific manufacturers are developing or have developed an HCL

Which is (I think) how it's supposed to be. The NICE guidelines recommend we be offered a CGM and there's supposed to be a choice. Ordinarily the choice is going to be between the cheapest ones, but if there's one that can make your pump into an HCL then that seems like a really strong reason for wanting it and I think it ought to be offered. (In your case it sounds like you'll be using Libre 2 anyway, in which case there's just the cost of the software (if there's any additional cost at all).)

 

[Bruce Stephens]

There's another discussion:

This one's mostly about the 21 August statement here: https://www.nice.org.uk/guidance/indevelopment/gid-ta10845/documents

As I understand it a TA normally allows 3 months for implementation which is hopelessly impractical for this, so they're suggesting to NICE that it should be a 5 year rollout, with a revision after 3 years (when Partha Kar hopes they'll have evidence allowing the criteria to be widened to allow anyone with T1 to qualify).

This is all still contingent on suitable commercial agreements.