Any funding available for CGMs at all?

[Smiric]

I'd say that 52 years with no diabetes complications is a sign that @Pumper_Sue is pretty healthy indeed!

Agreed - she's clearly done very well!

 

[grovesy]

Just responded to it.. had to wait for sugar to kick in =)

I think we posted at the same time.
Even if you do not personally agree with them NICE are the body that scrutinize all manner of Health condtions, and recommends how conditions are treated.

 

[pottersusan]

That's ridiculous.

I'm still on the case! but am not holding my breath.

 

[Ginny03]

Crazy. When was this told to you may I ask?

Summer 2015 I think

 

[trophywench]

I've not looked into a pump as of yet. Listened to one of Dr Bernstein's vids the other day & he doesn't recommend them because they can cause scar tissue and therefore affect insulin absorption. Haven't done my own research on the matter as of yet though. I don't mind doing MDIs though - they're a minor inconvenience. It's just the constant thought process/calculations that bug me - something that a CGM helps a lot with as it happens =P

Soooooo - what about the flippin scar tissue giving yourself jabs for 40 years causes then? I was sticking a 4mm needle in myself at least 5 x daily. I can assure you I have shedloads of now non-absorbent areas all over my thighs and abdomen. Now on a pump - it's once every 2 or 3 days. Sure the 'introducer' needle for pump cannulas is longer than 4mm - it has to be in order for the pointy bit at the business end to protrude through the bit of soft Teflon tubing that stays inside you when you remove the needle, then the insulin drips though that Teflon bit and stays in you thereafter. They aren't like 'vein' cannulas, the sort they infuse drugs, glucose drips etc through.

Does not compute, Jim !

 

[Smiric]

I think we posted at the same time.
Even if you do not personally agree with them NICE are the body that scrutinize all manner of Health condtions, and recommends how conditions are treated.

Well after many years living with this, I think their scrutiny needs to be more scrutinizing, because I think everyone can agree that post-prandial tests are incredibly important in managing the condition well.

 

[Smiric]

Summer 2015 I think

Wow. I was hoping that date would be significantly further back! I hope that that kind of thinking is being quashed, especially in regards to medical practitioners.

 

[Pumper_Sue]

First off, let me say that I'm very glad that you are well. I feel like I can quite easily make that statement, though - would you not agree that you would be healthier with access to better monitoring? You'd have had better sugar control throughout, which means less damage done to all of your cells. The same applies to me too, just to a lesser extent as I've not had diabetes for as long (13 years now), so the care was better when I was first diagnosed - although, looking back, there was still a lot of horrible advice given to me. I would say the exactly the same of people being diagnosed now, too, because in the years to come the care will increase and therefore less damage will be done to people with future diagnoses compared to them.

I have very good monitoring thanks 🙂 Diabetes wise I couldn't be healthier, a lot of that has to do with doing my research and learning for myself over the years how to look after myself as most of the forum members do.
Basically you are trying to teach the forum members to suck eggs 🙄
Your comments regarding the use of your Libre are not recommended by the manufacture and downright dangerous imho and your knowledge regarding CGM etc leaves a lot to be desired. Basically as you don't understand and haven't made any effort over the past 13 years to help yourself I doubt many people will listen to your arguments.
Please also note there are many thousands of type 1's who have lived with diabetes for a lot longer than I have and also have no complications 🙂

 

[Smiric]

Soooooo - what about the flippin scar tissue giving yourself jabs for 40 years causes then? I was sticking a 4mm needle in myself at least 5 x daily. I can assure you I have shedloads of now non-absorbent areas all over my thighs and abdomen. Now on a pump - it's once every 2 or 3 days. Sure the 'introducer' needle for pump cannulas is longer than 4mm - it has to be in order for the pointy bit at the business end to protrude through the bit of soft Teflon tubing that stays inside you when you remove the needle, then the insulin drips though that Teflon bit and stays in you thereafter. They aren't like 'vein' cannulas, the sort they infuse drugs, glucose drips etc through.

Does not compute, Jim !

As I say, I've not done enough research into the matter myself. I completely agree that sticking anything into the tissue for a long enough period of time is going to create problems. I just don't know whether more frequent/smaller needles is better than a larger cannula left in for an extended period of time or vice-versa. If anyone can point me in the direction of any studies regarding this, then I would be very grateful.

 

[everydayupsanddowns]

Thanks a lot for your very informative reply!

I shall definitely have a word with my GP after doing the calculations. As I've said, compared to what I was using before I'm certain I could save the NHS money by transferring my monitoring over to the CGM with test strip supplementation. I would definitely be interested in the concrete numbers, though.

Don't rush in yet. By all means get your head around the numbers as they apply to you... but for the Libre, there is no easy way your GP can prescribe it (yet). It isn't on their system.

Only heard of NICE the other day, and that was through my doctor telling me that they don't recommend post-prandial testing (which he subscribes to for some strange/respect-reducing reason). So my view of them is not the greatest, let's just say that.

I can categorically say that the CGM has helped me immensely already - and I've only had it just shy of two weeks. It's helped me to notice a pattern of hypoglycemia during the night, leading me to reduce my basal dosage by nearly half (so far). It's also made me realise that my hypoawareness, while OK during the day (notice at around 3.5mmol) is significantly reduced at night (2.5mmol) - something I likely would not have picked up on through testing alone, as when I've done tests in the night, they tended to be exactly half way through my sleep, whereas the hypos are occurring roughly 2/3s through it. Obviously this is only anecdotal though - although I've seen so many anecdotal stories online in a similar vein that my confidence in CGMs is clearly a lot higher than NICEs.

Don't fall into the 'newspaper' trap of thinking that NICE is just one thing. One dusty room making OBSAT* decisions. It is large organisation that exists to try to unpick the complexity of healthcare and spending in a modern NHS. When you have A Thing, what is the best way to go about treating it? What are the better choices? What works? Plus... since there isn't enough money to do everything for everyone - how do you make sure the money being spent on Very Expensive Thing A wouldn't be better of, more effective, and help more people if it were spent on Very Expensive Drug B.
(* Old Boys Sat Around a Table - though I am sure there are some NICE groups that make just such decisions)

So in terms of T1D, NICE issue 'guidelines' for all sorts of things and make them available to Drs and also to patients, which go through all the options and, as far as possible, try to work out what works best on average for the most people. What should be tried first. What should be tried next. For the T1D in adults guideline they put together a 'guideline development group'. An eminent chair, respected physicians, DSNs, Dietician, Pharmacist, Health Economists, chemists, GP, research specialists, people who know the NICE process inside out *and* a couple of punters. I was one.

You can read more and/or download the guideline here: https://www.nice.org.uk/guidance/ng17?unlid=7810374862016912145443

We worked on it for something like 3 years. And it was only an 'update' of the old guideline!

It's great to hear that you have got so much out of CGM. My experience is very much the same. They are a MASSIVE help to me. I really wanted the new Guideline to be able to recommend CGM more widely. But that was simply not what the evidence showed. In NICE terms, how you feel, what the Drs us in their clinical practice or what individuals in the group 'like' doesn't mean very much. It boils down to: What benefit can you clearly demonstrate in a clinical trial for the right population with a good comparison. And is it a big enough trial for the numers to make sense? Or is it just a dozen people? What happens to A1c? What happens to hypoglycaemia? What about Severe Hypoglycaemia? Ambulance callouts etc?

And it's not just hard numbers... NICE also factor in 'quality of life' improvements using something called QALYs (Quality Adjusted Life Years) - even if you don't get better, do you feel better?

As I said the literature search that we undertook explicitly excluded Libre - there was nothing published in time for us to look at.

Incidentally... odd that your Dr suggests NICE don't advocate post-meal testing. They have post meal recommended targets (5.0-9.0mmol/L after 90 minutes for people who choose to test post-meal). I have heard DAFNE prefer people not to test after meals, but that seems to be because those results are often muh harder to interpret and some people can massively over-correct a post-meal high forgetting that they still have hours of insulin still active from the pre-meal dose.

Not sure if it's because I still have low blood sugar or not, but what do you mean by you have to use it over 70% of the time to see benefits? Do you mean on an individual basis? Because I don't see why people wouldn't use it way over 70% of the time being as it's in their arm anyway - I personally use it for probably around 90% of the time.

This wasn't evidence for Libre, this was for other CGM systems. Research showed that the benefit continued as long as the device was used for around 70% of the study period. You couldn't just wear one sensor and 'fix things' in any permanent way.

I completely agree with your two points. Education is the key to the first one - the more people we can get to apply the pressure, the quicker things will happen - assuming the evidence for its efficacy is sufficient, that is. Actually, education is the key to both. It's very easy to overcorrect using a CGM. You have to be aware of insulin times (onset, peak & duration) as well as many other factors that might be affecting blood sugar before you take a correction bolus.

Absolutely. But that is the real issue. There are periodic 'petitions' that do the rounds. But if the result of them is that they push CGM to the front of the queue to be received and this is BEFORE the quality evidence is available it would be entirely counter-productive. The review would happen using older, weaker evidence and bang goes the chance. CGM would then be firmly back of the queue.

What you have to realise is that you (and me) are one of a fairly niche population with a niche disease who seem to get much better than average results from using CGM. Many forum members appear to be in the same group. But versus the T1 population as a whole we are a tiny minority. One consultant I spoke to suggested that of the people in his clinic who they do manage to get CGM for, perhaps only 10% continue with it. There are many, many reasons why people to stop, but they DO stop - even when the funding has been arranged.

What to do next?
Ignore the national picture - that is being dealt with.

My suggestion? Speak to your clinic. Show them your results. Show them how access to continuous data improves your outcomes and quality of life. Ask about funding arrangements in your area. Look up INPUT and see what they suggest. If no one in your area gets CGM, why not? Do your CCG (or whatever they are called this week) have a policy on CGM, or T1 Diabetes generally? If not... can you get involved as a patient rep?