New NICE guidelines

Status
Not open for further replies.
SB2015

SB2015

Well-Known Member
Relationship to Diabetes
Type 1
I bumped into one of our DSNs today and she said that there was news about access to closed loop that I would like.

Is anyone aware of anything from Partha Kar on Facebook (I am a non user)?
 
I wait with great anticipation.
 
A mention on BBC World Service News last night. Started off implying it was for ALL T1s, but then changed emphasis to those who find control a problem.

Personally, I fancy the tech (retired geek) but not sure I'd get on with all the plumbing (depending on models/brands) that it involves.

Also said cost was £6k pa, like that was a lot, which of course it is, but how does the potential savings over the long term look? No mention on the news but I'm sure the NHS will have done the sums:confused:
 
barrym said:
A mention on BBC World Service News last night. Started off implying it was for ALL T1s, but then changed emphasis to those who find control a problem.

Personally, I fancy the tech (retired geek) but not sure I'd get on with all the plumbing (depending on models/brands) that it involves.

Also said cost was £6k pa, like that was a lot, which of course it is, but how does the potential savings over the long term look? No mention on the news but I'm sure the NHS will have done the sums:confused:
Click to expand...
The BBC report on their website this morning that 100,000 people will get it, out of a total of 400,000 with Type 1 Diabetes. So one in four. I don’t know how that compares with the number of people who currently have pumps.
 
Robin said:
The BBC report on their website this morning that 100,000 people will get it, out of a total of 400,000 with Type 1 Diabetes. So one in four. I don’t know how that compares with the number of people who currently have pumps.
Click to expand...
I think the last figure I read was just over 20% of Type 1 diabetics have pumps which seems quite high, so it looks like they are going to roll out closed looping to everyone on pumps, from those figures, but obviously some pumps are not compatible at the moment, like the Omnipod, which is quite a popular pump. Then again, this isn't all going to suddenly happen overnight or even within a year I would think and by then hopefully the Omnipod will be upgraded to loop otherwise they are going to be left behind.
 
Robin said:
The BBC report on their website this morning that 100,000 people will get it, out of a total of 400,000 with Type 1 Diabetes. So one in four. I don’t know how that compares with the number of people who currently have pumps.
Click to expand...
As @rebrascora says it's apparently about 21%. And the HbA1c line in the draft is 64 (compared to 69 in the current pump TA). So 25% doesn't seem crazy. (Also they're recommending it for everyone who's pregnant or planning a pregnancy though I don't suppose that's a large number.)
 
To be honest, this will be like a rerun of the Libre launch. Expect chaos and many disappointed people.
 
barrym said:
Also said cost was £6k pa, like that was a lot, which of course it is, but how does the potential savings over the long term look? No mention on the news but I'm sure the NHS will have done the sums
Click to expand...
I can only see summaries, but yes, it's very much something that's being considered. Towards the end of the "Public committee slides" are various cost models: https://www.nice.org.uk/guidance/indevelopment/gid-ta10845/documents

They note that some things are probably undervalued:
  • “reduction in mental burden, especially from newer versions of HCL systems that are testing free and lower alarm burden, with improved algorithms have not been fully demonstrated in the evidence. Hence the QALY calculation underscores this”.
Clinical experts:
  • “[SA09] does not also take into account other carer impacts in relation to helping/managing Type 1 Diabetes. Such as intervention due to hyperglycaemia which would be less on a HCL but is still required in the event of pump failure, illness, growth etc”.
  • “I feel it is essential to look at the impact of these technologies on quality of life of people living with diabetes and their carers.”
  • “As a long-term health condition type 1 diabetes is associated with significant psychological issues and ‘diabetes distress’ has an enormous impact on quality of life as well as diabetes outcomes in such patients.”
  • “We know already from clinic comments and the NHS Pilot that family quality of life is improved”
  • “Ease of use of the technology is not captured nor is fear of hypoglycaemia”
  • “In paediatric practice parents report improved quality of life and sleep”
 
Bruce Stephens said:
As @rebrascora says it's apparently about 21%. And the HbA1c line in the draft is 64 (compared to 69 in the current pump TA). So 25% doesn't seem crazy. (Also they're recommending it for everyone who's pregnant or planning a pregnancy though I don't suppose that's a large number.)
Click to expand...
It makes you wonder what sort of people are making these rules, limits, decisions. Still quoting targets of HbA1c! An out of date, imprecise measurement (measurement? A loose description), rather than TIR which is real.

If they put an arbitrary value on good v poor control, then many of us here will be out of luck. I'm guessing TIR of say 85%+ is going to be a very low Hba1c equivalent.

Not holding my breath 😉
 
barrym said:
Still quoting targets of HbA1c!
Click to expand...
I think much of the evidence is based on HbA1c so that's inevitable. And it's also inevitable that the largest benefits (at least, those that are easy to cost) will be to those who currently have poorer HbA1c: those of us who typically have HbA1c of low 50s or below can't benefit so much from lowering it.
 
Bruce Stephens said:
I think much of the evidence is based on HbA1c so that's inevitable. And it's also inevitable that the largest benefits (at least, those that are easy to cost) will be to those who currently have poorer HbA1c: those of us who typically have HbA1c of low 50s or below can't benefit so much from lowering it.
Click to expand...
I do wondrcwhat hapens on those days when ones sensor is new, or habing a compression low, or just throwing a wobbly
I wouldn't trust my sensor enough to trust it with control of my insulin
 
Also sensor can occasionally drop out of contact with pump, so pump can’t do its stuff correctly, also cannulas can fail, we had that the other day with blood sugars going higher and higher and it was because the cannula was starting to come loose and the insulin wasn’t going in properly. No amount of pump automatically increasing insulin is going to make any difference if the insulin can’t get where it’s needed! So you do still have to be a bit on the ball and can’t completely just let it get on with it, you also still have to enter carbs for meals, having said that though in the month since we swapped to hybrid closed loop we’ve had far fewer Dexcom alarms and some days where the track is amazing, a few bumps but staying in range far more than it ever did before. Not everyone wants pumps, but if they are going to become available to more people who do then that’s got to be good.
 
Fingers crossed the guidance helps reach more people, and gives access to the people who both need it and can benefit from it.

The opportunities are huge! But living with a closed loop can be a frustrating experience at times, and they do need just the right sort of looking after.
 
Bruce Stephens said:
“In paediatric practice parents report improved quality of life and sleep”
Click to expand...
This, all I want is not to have to change my background requirements every 2 weeks because of hormones and to have more than 2 nights in a row of sleep undisrupted and in range. I am so mentally tired.

It is promising and can only be good news. Fingers crossed the next steps are favorable and access is fair and widespread.
 
everydayupsanddowns said:
Fingers crossed the guidance ... gives access to the people who both need it and can benefit from it.
Click to expand...
That won't happen unless Diabetes UK and as many other individuals and organisations as possible fight back against the draft recommendations.

Diabetes UK, and JDRF, and the Association of British Clinical Diabetologists, and NHS England all made submissions to the committee before the draft recommendations were produced; and all of them emphasised the adverse mental health impact of T1D on many people, and the fact that hybrid closed loop systems (HCL) can substantially reduce that impact for many people. The same point was made by most of the individual clinical experts and individual 'patient experts' who were asked to make submissions.

The draft recommendations completely exclude consideration of our mental health. In fact-- and here the 'find' function comes in handy!-- the document studiously avoids using the phrase 'mental health' at all. Instead, they use the phrases 'mental load' and 'mental burden'-- presumably to avoid having to recognise that this can and often does amount to or severely aggravate a health issue.

Similarly, depression is not mentioned at all in the document, and anxiety is only mentioned three times, and solely in the context of 'parent and carer anxiety' with regard to children with T1D. This despite the fact that, as several consultees mention, people with T1D are at much higher risk of (clinical) depression and anxiety than the general population, and the burden of managing T1D plays a large role in this.

Under the draft recommendations, even if you are suffering very high levels of distress and your clinicians are sure that HCL would greatly improve your mental health, this is irrelevant; you will only be offered HCL if your HbA1c is 64 or more.

The NICE draft recommendation is in sharp contrast to the recommendations for Scotland, which are that HCL should be offered to anyone with T1D who is either failing to achieve good HbA1c levels or "experienc[ing] diabetes-related distress ... that adversely affects quality of life ..., and which is likely to be improved by moving to a closed loop system": https://shtg.scot/our-advice/closed...l-pancreas-for-type-i-diabetes-mellitus-t1dm/ .

Note that the Scots are not saying HCL should be offered to everyone who experiences any diabetes-related distress. For many people, their DRD would not be "likely to be improved by moving to" HCL. But for other people there is clear evidence that HCL reduces distress and improves mental health. The NICE document does not explain why they decided to differ from their Scottish counterparts.

More broadly, the NICE document does not explain why they failed to take any account of mental health. They seem to want us to believe that it is not possible to capture mental health benefits in economic models, which NICE needs to use in order to decide whether the cost of HCL is worth the benefit. It just so happens that I know someone who was involved in developing NICE guidelines for a mental-health condition; I discussed this with her, and yes it is possible. NICE simply does not seem to have tried.

But the NICE draft recommendations are not the last word; NICE is now asking for comment not only from the previous consultees but also from the public.

I trust that DUK and JDRF and ABCD and NHSE will all push back during the current consultation. And any individual can comment too, using the online commenting function here: https://www.nice.org.uk/guidance/indevelopment/gid-ta10845/consultation/html-content .

Sorry-- just had to get that off my anxious and depressed chest! ; )
 
Status
Not open for further replies.
Back
Top