Update on the HCL criteria

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What does everyone think?
I am so glad it is all under 18s and those planning children. However 7.5 would cut out a lot of people?
 
If this is the final guidance then it’s amazing but hate to be the negative one but how will they finance this?
 
PhoebeC said:
What does everyone think?
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My feeling is that this is just the beginning and the criteria are likely to be widened over the 5 year rollout. So while Partha Kar's prediction that it'll be available to everyone with T1 within 5 years is rather ambitious I don't think it's crazy.

58 (or 7.5%) means it won't be available to everyone, but it would make it available to lots (I don't think the estimate has been published yet but I wouldn't be surprised if it's 50% or more). (More than can (or should be able to) get a pump.)

I'm imagining a general understanding that the end state is most people (with T1) using HCL. Offering it first to those who'll benefit most makes sense, and while that's happening everyone involved gets experience of doing that, evidence of costs and benefits and how to do it better. And everyone involved gets experience on how to offer it more cheaply.
 
Lily123 said:
If this is the final guidance then it’s amazing but hate to be the negative one but how will they finance this?
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Those are the discussions, as I understand it. So some combination of manufacturers offering good terms (like using cheaper CGMs such as Libre 2 and 3) and trying to judge possible savings to the NHS of more people using HCL.
 
Bruce Stephens said:
Those are the discussions, as I understand it. So some combination of manufacturers offering good terms (like using cheaper CGMs such as Libre 2 and 3) and trying to judge possible savings to the NHS of more people using HCL.
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That makes sense
 
I understand the need to focus on those who need it most.
But there is a belief that those who need it most will benefit most from the newer better tech. But this is not always the case. There are often times where those who understand diabetes better and have the confidence to try out new things and think for themselves will get greater value.
It feel as if those of us who are most proactive are nearer the bottom of the priority list.
 
helli said:
It feel as if those of us who are most proactive are nearer the bottom of the priority list.
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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.)
 
Lily123 said:
If this is the final guidance then it’s amazing but hate to be the negative one but how will they finance this?
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I think it's completely possible that this gets approved but happens really unevenly across the country (much like TA151) leaving many people not getting what they ought to be offered.
 
I watched this video from Partha Kar this morning and must say I wasn’t surprised at the criteria.

I can understand the need to allocate funds wisely and to those who would possibly get the most benefit. The only slight glimmer of hope for me is that under 18s will get HCL and be allowed to keep it after they turn 18. So eventually all T1s will have been offered HCL. In the meantime only those with an HbA1c > 58 or struggling with disabling hypos or planning pregnancy will be entitled. So I guess it makes sense.

I still feel a little disappointed as I would have liked to try it myself but hopefully Partha’s prediction of all T1s within 5 years will come true!

helli said:
There are often times where those who understand diabetes better and have the confidence to try out new things and think for themselves will get greater value.
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I agree and would welcome being able to give feedback to help others with new technology.
 
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!
 
Tdm said:
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.
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My guess is that (after money) that's the main reason the plan will take years.

People regularly say here that pump funding has been approved and that they're waiting on the list for training. And that's with ~25% of people on pumps (very unevenly spread between ICSs). It's estimated that ~75% will fit the new criteria.
 
Tdm said:
Good former child diabetics get to keep it! A step in the riht direction, and a reasonable way to start!
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I'm pretty sure that's the intention for everything now, so if a child gets a particular CGM they should (if they want) be able to keep that.
 
Good. If something works for you they shouldn't change it unless its for the better
 
Do we know when this guidance is supposed to be published?

A bit curious as the number of people who qualify could change vastly by that time
 
Lily123 said:
Do we know when this guidance is supposed to be published?

A bit curious as the number of people who qualify could change vastly by that time
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October, I think. Why do you think the number will change significantly? I'd expect only fairly minor changes and I think this'll be happening over 5 years (if only because doing it much faster's not practical given the staff available).

(I can imagine some patients imagining they might qualify by having an HbA1c over 58 so trying to make that happen, but most likely they'll be disappointed. The wording is (in my opinion) quite likely to try and exclude that (like TA151 does now).)
 
Bruce Stephens said:
October, I think. Why do you think the number will change significantly? I'd expect only fairly minor changes and I think this'll be happening over 5 years (if only because doing it much faster's not practical given the staff available).

(I can imagine some patients imagining they might qualify by having an HbA1c over 58 so trying to make that happen, but most likely they'll be disappointed. The wording is (in my opinion) quite likely to try and exclude that (like TA151 does now).)
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That’s good then.

I think It would change a bit because of the number of people who will then have a HbA1C over that as, as we all know HbA1C can change a lot within the 5 year time frame.

Plus the under 18 catch, there’ll be a lot of people under 18 who within a couple of years will be over 18 because of the time frame of the guidance which could discount a good few thousand. Along with the number of new diagnoses increasing in both children and adults which changes the HbA1C and 0-18 guidance

Obviously none of that effects the guidance in itself, only the time frame and funding
 
Tdm said:
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,
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You can snack when on MDI. It was certainly something I used to do every day when on MDI.
 
Lily123 said:
I think It would change a bit because of the number of people who will then have a HbA1C over that as, as we all know HbA1C can change a lot within the 5 year time frame.
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I wouldn't take the 75% as a precise number. More a ballpark estimate. I'm sure there is, somewhere, a table showing (anonymised) HbA1c numbers of diabetes patients in England, and while those'll change (one hopes gradually reduce) over time, I doubt the numbers will change very fast.
Lily123 said:
Plus the under 18 catch, there’ll be a lot of people under 18 who within a couple of years will be over 18 because of the time frame of the guidance which could discount a good few thousand. Along with the number of new diagnoses increasing in both children and adults which changes the HbA1C and 0-18 guidance
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Numbers will likely increase (I think the current rate is an increase of 4% a year in England which is high internationally for unknown reasons). And COVID-19 might well increase that further (or not, but it's known to increase the risk of autoimmune diseases so presumably it'll have some effect and nobody expects it to reduce Type 1) and (unlike some other countries) we seem to have chosen to allow children to be repeatedly infected, unprotected by vaccine.
Lily123 said:
Obviously none of that effects the guidance in itself, only the time frame and funding
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Sure, which is still under negotiation. I still think it's possible that by 2028 it'll be offered to anyone, but it seems hard to rule out the possibility that it'll be much worse than that, much closer to TA151 (which nobody thinks is being properly followed).
 
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