Updated NICE T1 guidelines published

[Spiker]

It's nice to see that detemir is the preference for basal insulin now, as I posted in the other thread about how the long acting human insulin was known to increase nocturnal hypoglycaemia and this is not recommended anymore (Section 1.7.3).

I don't see it saying glargine is not recommended any more. It says detemir and glargine are fine. As you say it gives detemir as its first preference, though that only reflects the general practice since the glargine cancer scare.

I don't see these guidelines supporting what you are claiming about a nocturnal hypo risk for glargine.

They do come out strongly against use of mixed insulin regimes or any non basal-bolus regimes, even for newly diagnosed people. That is significant. A good idea in my opinion as people often get stranded on the mixed insulin regimes and can often struggle with the inflexibility of these regimes.

 

[Spiker]

******, read the guidelines for cgm. I don't fit any of the conditions - that's a good thing though.

I think you might fit the conditions of you would be having frequent night hypos without the CGM?

The CGM conditions in summary seem to be - you have some problem with diabetes management and have tried everything else and only a CGM is effective in solving it.

The problem will be whether CCGs are able to alter their funding to align with the new NICE guidelines. Since NICE don't provide any funding. But it does at least create valid grounds for us to ask for these things.

 

[Mrs Vimes]

Possibly but using the pump has got rid of them. I went on it for dawn phenomenon and being able to change the basal has made the difference. I could argue the toss but the cgm shows what's happening and also I could 'argue' myself into losing my driving licence? When actually I'm quite safe.
Can I argue I could be dangerous in a spin class?
At the moment though very expensive I'm lucky that I can afford it. Do I push and take money away from somewhere else? I think I'm special but no more than anyone else here.
I believe everyone should have the opportunity to at least trial it. I think it would shock people how some foods, moods, hormones and bleedin weather conditions can affect sugars.

 

[JBlaza]

Whilst I agree with the earlier post that diet (LCHF) is probably the best way to get a low HbA1C, I do feel like I am flying blind with finger testing. I enjoy exercising - I ran marathons before diagnosis and would like to again - and I am finding it difficult to follow LCHF when I have to keep spiking my BG before and during exercise to avoid hypos. I think a pump and a CGM would really help me but I don't qualify for either apparently!

 

[Matt J]

After various threads on here from people being prescribed cheaper needles. It's down in black and white now.

1.8.4 After taking clinical factors into account, choose needles with the lowest acquisition cost to use with pre‑filled and reusable insulin pen injectors. [new 2015]

 

[iHs]

If many type 1s take this NICE guidance to heart, then unless they can test bg levels about 6-8 times per day (many UK GPs are now trying to reduce the amounts of teststrips prescribed to be no more than 150 per month) or follow a lower carb way of eating food to reduce the swings, then I can see that trying to achieve an hba1c of 6.5% or under, is going to put an increased demand on call outs for paramedics to deal with hypoglycaemia and admittance to A&E because tight control usually impairsc awareness to recogonise the hypo feeling at a safe bg level or for the need for 3rd party assistance. Hopefully the wise will look at the buccal lining route and using Glucogel in a bottle and give 3rd party help silently. Sadly, the funding of cgm is still a very costly business and unless the prices reduce, then a CCG wont be able to fund cgm and pumps. CCGs would need to approach government officials and ask where the money is going to come from, if not from taxes?

At the end of the day, the guidance on bg levels is down to a dsn or hospital consultant to advise on and not NICE unless it will be to someones benefit to obtain a pump or to prevent nerve damage complications from getting worse.

 

[tim2000s]

Which brings us right back to top up funding/insurance, which many of us do unofficially. Putting the correct scheme in place would be hugely beneficial. I know there are many who see this as a slow road to privatisation of the health service, but frankly, we can't afford it at the moment as a country and this is detrimental to our personal care.

 

[ann34+]

If many type 1s take this NICE guidance to heart, then unless they can test bg levels about 6-8 times per day (many UK GPs are now trying to reduce the amounts of teststrips prescribed to be no more than 150 per month) or follow a lower carb way of eating food to reduce the swings, then I can see that trying to achieve an hba1c of 6.5% or under, is going to put an increased demand on call outs for paramedics to deal with hypoglycaemia and admittance to A&E because tight control usually impairsc awareness to recogonise the hypo feeling at a safe bg level or for the need for 3rd party assistance. Hopefully the wise will look at the buccal lining route and using Glucogel in a bottle and give 3rd party help silently. Sadly, the funding of cgm is still a very costly business and unless the prices reduce, then a CCG wont be able to fund cgm and pumps. CCGs would need to approach government officials and ask where the money is going to come from, if not from taxes?

At the end of the day, the guidance on bg levels is down to a dsn or hospital consultant to advise on and not NICE unless it will be to someones benefit to obtain a pump or to prevent nerve damage complications from getting worse.

I agree, also, In my experience there might have to be many more teststrips than even 6-8, and even then, without a pump, or even with a pump, there may be hypo issues for some. Also there may be other complicating issues which may affect control - eg. other autoimmune diseases or other health conditions, or general ageing - and a CGM would be essential then - cant see where all the funds are going to come from.
Can someone let me know whether the guidelines are for children and younger type 1 adults, and not older people with long term Type one?
I only saw my consultant recently and he was more than happy that i was following his advice to keep HbA1c over 7%. it was 7.3% and he was happy (when younger i was always under 6.5%, average just under or over 6%). In the early days testing a lot was seen as obsessive - i recall nurses at my teaching hospital told me to do 3 tests every other day, or to alternate with a couple of tests every day, but at different times each day to get a view of things, and no-one seemed to understand the variations, though it was pretty obvious they were there for many. Interesting how times change!

 

[donnellysdogs]

If many type 1s take this NICE guidance to heart, then unless they can test bg levels about 6-8 times per day (many UK GPs are now trying to reduce the amounts of teststrips prescribed to be no more than 150 per month) or follow a lower carb way of eating food to reduce the swings, then I can see that trying to achieve an hba1c of 6.5% or under, is going to put an increased demand on call outs for paramedics to deal with hypoglycaemia and admittance to A&E because tight control usually impairsc awareness to recogonise the hypo feeling at a safe bg level or for the need for 3rd party assistance. Hopefully the wise will look at the buccal lining route and using Glucogel in a bottle and give 3rd party help silently. Sadly, the funding of cgm is still a very costly business and unless the prices reduce, then a CCG wont be able to fund cgm and pumps. CCGs would need to approach government officials and ask where the money is going to come from, if not from taxes?

At the end of the day, the guidance on bg levels is down to a dsn or hospital consultant to advise on and not NICE unless it will be to someones benefit to obtain a pump or to prevent nerve damage complications from getting worse.

How many type 1's have been limited with strips. Certainly since my welsh GP 5 years ago I have as many strips as needed. No troubles at all with my GP - even since returning to MDI.

 

[iHs]

Where I live in a heavily populated area, the type 1s and type 2s that use insulin that come under my CCG have been restricted down to 150 per month to save on funding.

 

[iHs]

This is the rest of the NICE document that didnt come up in Tims link above

https://www.nice.org.uk/guidance/in...-vibe-and-g4-platinum-cgm-system-consultation

 

[Minnie45]

Interesting reading, thanks for posting. Where I am T1s have unrestricted test strips, I was restricted (or nearly restricted) once but it was down to confusion at my GP surgery thinking I was a T2 (despite being a T1 for 40 years at the same surgery lol). T2s are restricted but no restrictions for T1. I am very aware that I test frequently, I am on a pump and now have an HBA1C at non diabetic levels (it's not been easy getting there), and I 'supplement' my strips which I get through Amazon. I tried the Libre but it gave me a terrible rash no matter what I did, I'm seriously contemplating going down the self funding CGM route instead of purchasing extra test strips each month, can someone advise how I go about obtaining and self funding a CGM? Thanks.

 

[donnellysdogs]

After various threads on here from people being prescribed cheaper needles. It's down in black and white now.

1.8.4 After taking clinical factors into account, choose needles with the lowest acquisition cost to use with pre‑filled and reusable insulin pen injectors. [new 2015]

My DSN at GP tried to get me on cheaper needles but my consultant had specified the ones to be prescribed. I would fight this if I was given cheaper needles purely on the fact that I am lazy and don't change them every time but would need to with cheap ones.

 

[Spiker]

Where I live in a heavily populated area, the type 1s and type 2s that use insulin that come under my CCG have been restricted down to 150 per month to save on funding.

Well the new guidelines are clear that T1s should be allowed 10 tests a day or more if necessary, so your CCG can now be challenged based on NICE. Whether successful or not, who knows, but at least there is a formal basis for a challenge.

 

[ann34+]

How many type 1's have been limited with strips. Certainly since my welsh GP 5 years ago I have as many strips as needed. No troubles at all with my GP - even since returning to MDI.

A lot, as far as i have heard from diabetic organisations when i have phoned them for help about strip problems in this area - sorted now but very upsetting at two different GPs in last two years, needed consultant and nurse letters, and still the first GPs always mentioned the issue again whenever i saw them, for anything. I felt i had to leave, and did. Still problems later at this GP but sorted stressfully. Recently asked about strip upgrades that go with my pump, could have been much more definite, but could see not getting anywhere. Will try to sort later. If a person moves into this area they are allowed the strips they had been using, not upgrades. Anyone living here already just has the strip that the CCG says - which is much cheaper but, according to the nurse, not so accurate. Doc say more accurate ones coming in soon. i now realise i was very protected when i was in the south.

 

[Daibell]

My DSN at GP tried to get me on cheaper needles but my consultant had specified the ones to be prescribed. I would fight this if I was given cheaper needles purely on the fact that I am lazy and don't change them every time but would need to with cheap ones.

I have cheap needles and only use one a day with no issues.

 

[ConradJ]

Which brings us right back to top up funding/insurance, which many of us do unofficially. Putting the correct scheme in place would be hugely beneficial. I know there are many who see this as a slow road to privatisation of the health service, but frankly, we can't afford it at the moment as a country and this is detrimental to our personal care.

I don't agree : the NHS spends £3.5 billion annually on A&E treatment for alcohol and drug misuse - if anyone should be forced to pay for treatment, then it should be all those late night revellers who consume 10 too many and not people who have had a condition like ours thrust upon them... that's what it was setup for.

 

[ConradJ]

Possibly but using the pump has got rid of them. I went on it for dawn phenomenon and being able to change the basal has made the difference. I could argue the toss but the cgm shows what's happening and also I could 'argue' myself into losing my driving licence? When actually I'm quite safe.
Can I argue I could be dangerous in a spin class?
At the moment though very expensive I'm lucky that I can afford it. Do I push and take money away from somewhere else? I think I'm special but no more than anyone else here.
I believe everyone should have the opportunity to at least trial it. I think it would shock people how some foods, moods, hormones and bleedin weather conditions can affect sugars.

Ask your DSN about the circadian profile.

I used to use the Vibe, but changed to the Accu Chek Insight this year - the circadian profile algorithms have eradicated night time hypos and dawn phenomenon for me... you should be able to set 24 hourly basal rates on the Vibe if I recall correctly. (You will need to see your DSN to calculate the profile.)

 

[iHs]

A lot, as far as i have heard from diabetic organisations when i have phoned them for help about strip problems in this area - sorted now but very upsetting at two different GPs in last two years, needed consultant and nurse letters, and still the first GPs always mentioned the issue again whenever i saw them, for anything. I felt i had to leave, and did. Still problems later at this GP but sorted stressfully. Recently asked about strip upgrades that go with my pump, could have been much more definite, but could see not getting anywhere. Will try to sort later. If a person moves into this area they are allowed the strips they had been using, not upgrades. Anyone living here already just has the strip that the CCG says - which is much cheaper but, according to the nurse, not so accurate. Doc say more accurate ones coming in soon. i now realise i was very protected when i was in the south.

Dont come and live in the West London area

 

[ConradJ]

I have no friends!.

You have here.