Latest guidelines

[tim2000s]

Guys, I've run this past a few people that should know, and this doesn't seem to have anything to do with NICE or the UK NHS teams. Some of the senior bods in the NHS have never heard of it.

@MickyFinn would you mind pming me your course and hospital details as it sounds like they've gone woefully off track and decided to make their own recommendations based on local Libre data without taking into account what it's like to be a t1d.

 

[Shiba Park]

That's entirely possible. It's also likely that each hospital and GP surgery gives out differing information. It may also have a bearing on how sensitive or resistant to insulin each individual is. If I take a bg reading and it is 7.5, I couldn't correct as 1 unit of novorapid would drop my bg so by approximately 4.0, so I would have a hypo every time. Never straightforward is it?

Hi MickyFinn,

I have a similar insulin sensitivity to you - I pointed out to my GP that 1 unit would take me from hyper to hypo; he really couldn't refuse to prescribe a half unit pen! Have you asked?

Regards.

 

[MickyFinn]

Hi MickyFinn,

I have a similar insulin sensitivity to you - I pointed out to my GP that 1 unit would take me from hyper to hypo; he really couldn't refuse to prescribe a half unit pen! Have you asked?

Regards.

The half unit pen was discussed last night, and it looks as if I will now be prescribed them.

 

[iHs]

Try Apidra or Humalog instead of Novorapid. It's onset is faster and duration of action a bit shorter

 

[MickyFinn]

Guys, I've run this past a few people that should know, and this doesn't seem to have anything to do with NICE or the UK NHS teams. Some of the senior bods in the NHS have never heard of it.

@MickyFinn would you mind pming me your course and hospital details as it sounds like they've gone woefully off track and decided to make their own recommendations based on local Libre data without taking into account what it's like to be a t1d.

We were told these are national guidelines. I'm only bringing it to attention and asking if anyone else has been made aware of it. There isn't a libre trial in my area, those that have them are self funded. I will ask more questions when I have my appointment in two weeks and see if I can find out exactly where all this comes from.

 

[Kristin251]

I definately need a half unit pen. Couldn't live without it.

 

[richyb]

probably the only way to achieve this is to eat little or no carbs. Wonder how long it will be before it is then found this also has a harmfull effect.
My Hba has been around 48 and my gp and DSN said this was too low. I am now at 54 and fewer hypo's. Hypo's are bad also as can effect long term the brain from functioning correctly (so I was told).

 

[tim2000s]

@mickeyfinn, the point is that these aren't "National Guidelines". Those were published last year by NICE and have not yet been updated by NICE.

I think someone at your clinic has potentially been confusing things, as the Abbott trials are not run by the NHS, and with the best will in the world, those types of decision are not made off a single study.

 

[MickyFinn]

probably the only way to achieve this is to eat little or no carbs. Wonder how long it will be before it is then found this also has a harmfull effect.
My Hba has been around 48 and my gp and DSN said this was too low. I am now at 54 and fewer hypo's. Hypo's are bad also as can effect long term the brain from functioning correctly (so I was told).

I have no intention of allowing my bg to get below 5.5 if I can help it. I generally have very few hypos, one in the last 7 months actually and during that time my bg has only been higher than 9 on a handful of occasions. I want to keep it that way, so I'm with you on that.

To be perfectly honest, I doubt that most people could achieve staying between a range of 4.5 and 6.9, it just will not happen. I already said that I expect most people will carry on as they are now. Some are even suggesting the guide lines I was told about are an invention, but I was flagging this up and asking if anyone else had been told similar.

What I do find interesting is the part about needle cost and prescriptions being changed because of it without apparent cause to do so, has been largely ignored. The idea that I was prescribed glucoRX needles and as a result struggled with painful injections 90% of the time, and possibly only because of a deliberate misinterpretation of guidelines, makes me angry. I don't know if these supposed new guidelines are correct, but what I do know is we are given rather a lot of conflicting information, with GP's often being generally not aware of the latest guidelines.

The only thing I would suggest is that we need consistency of advice from medical professionals right across the board.

 

[MickyFinn]

@mickeyfinn, the point is that these aren't "National Guidelines". Those were published last year by NICE and have not yet been updated by NICE.

I think someone at your clinic has potentially been confusing things, as the Abbott trials are not run by the NHS, and with the best will in the world, those types of decision are not made off a single study.

I'm only flagging this up. I did check the NICE guidelines, and actually they do state that pre meal bg range should ideally be between 4 and 7, and it should be no higher than 9 two hours after eating.

Maybe I did not explain it properly, but this roughly tallies with the advice we were given, it was suggested to us that pre meal and regular bg range guidelines have been revised and tightened to between 4.5 and 6.9. Previously, we were told bg range was okay to be between 5 and 8, which is higher than NICE guidelines anyway.

They were advising us not to guess insulin doses when carb counting so that the insulin release period roughly matches that of the carb release period, which is supposed to be approx 4 hours, individual levels of resistance to insulin not withstanding.

On Diabetes UK, it states that the guidelines were indeed published in 2015 and then revised and updated in July 2016. And again, they did also say that this was as a result of research that came about because of those trials. Whether they are national guidelines or not, I don't know, I only know what we were told to be the case. If they have gone off paste with this, I would be incredibly surprised, but I would challenge it, what I won't do is assume. Again, I am only opening up a debate on this to see if others have been told similar.

 

[tim2000s]

Hi @MickyFinn I think what's been said is a bit of a mishmash of changes and updates. It sounds as though your local group have taken the 2015 NICE guidelines and updated their own course based on the 2015 update, hence why there is discussion of updates to guidance.

On the topic of carb counting and insulin dosing, whoever said that doesn't sound like they fully understand using insulin. Carb absorption times tend to vary dependent on the macronutrient ratios that are eaten (as most of us know all too well), while the fast acting insulins have a reasonably predictable action profile, that takes (dependent on individual) typically somewhere between 3.5 and 5 hours to undergo (with the last 10% or so of action taking place from about 2-2.5 hrs on).

The only way you can really affect insulin action "period" and "peak" is by adjusting the time you take it. If you get the dose wrong, the amount of insulin you have won't be enough for the food, but if you get the timing wrong, while the bg may return to the starting point, there will be a spike or a drop.

The update in 2016 was: Recommendation 1.15.1 has been reworded to clarify the role of GPs in referring people for eye screening and also to add information on when this should happen.

I'm assuming with regard to the Libre, they've taken the output from the IMPACT study that Abbott did and incorporated that into the local course as well.

Finally, the injecting between main course and dessert point is something that looks like it has come from Sugar Surfing.

Again, it sounds like a local modification of the DAFNE course, and kind of adds to the issues that the APPG for diabetes has been concerned about with regard to variability of diabetes care.

So, in short, your local team seem to have started from DAFNE, modified it, added a bunch of things in and changed their own local details to be slightly different from the UK wide or "known" knowledge bases. That's incredibly helpful of them!

 

[donnellysdogs]

We were told these are national guidelines. I'm only bringing it to attention and asking if anyone else has been made aware of it. There isn't a libre trial in my area, those that have them are self funded. I will ask more questions when I have my appointment in two weeks and see if I can find out exactly where all this comes from.

This is what I have tried to explain... its not a Libre trial for hospitals to give out a Libre to feed information back to Libre..

Its basically Libre offering a freebie of one sensor for a patient to trial and then carry on buying from Libre.....

Its good. But I really don't understand how they can be recommending new guidelines supposedly from Libre as the NICE guidelines do not even recommend its usage and Libre are still negotiating etc with NHS/NICE.

The way this has been explained by your healthcare people...well, I think they have used Libre on a promotional basis rather than a factual one.

So we are really saying that although some of the things you've been told weren't a surprise. Some of them do appear to be edged towards being manipulated..

 

[MickyFinn]

This is what I have tried to explain... its not a Libre trial for hospitals to give out a Libre to feed information back to Libre..

Its basically Libre offering a freebie of one sensor for a patient to trial and then carry on buying from Libre.....

Its good. But I really don't understand how they can be recommending new guidelines supposedly from Libre as the NICE guidelines do not even recommend its usage and Libre are still negotiating etc with NHS/NICE.

The way this has been explained by your healthcare people...well, I think they have used Libre on a promotional basis rather than a factual one.

So we are really saying that although some of the things you've been told weren't a surprise. Some of them do appear to be edged towards being manipulated..

You're assuming rather a lot there without knowing where exactly the info has come from. I was only provided with an overview and given a follow up appointment, and I intend to ask a lot of questions. Again, you're shooting the messenger.

 

[MickyFinn]

Hi @MickyFinn I think what's been said is a bit of a mishmash of changes and updates. It sounds as though your local group have taken the 2015 NICE guidelines and updated their own course based on the 2015 update, hence why there is discussion of updates to guidance.

On the topic of carb counting and insulin dosing, whoever said that doesn't sound like they fully understand using insulin. Carb absorption times tend to vary dependent on the macronutrient ratios that are eaten (as most of us know all too well), while the fast acting insulins have a reasonably predictable action profile, that takes (dependent on individual) typically somewhere between 3.5 and 5 hours to undergo (with the last 10% or so of action taking place from about 2-2.5 hrs on).

The only way you can really affect insulin action "period" and "peak" is by adjusting the time you take it. If you get the dose wrong, the amount of insulin you have won't be enough for the food, but if you get the timing wrong, while the bg may return to the starting point, there will be a spike or a drop.

The update in 2016 was: Recommendation 1.15.1 has been reworded to clarify the role of GPs in referring people for eye screening and also to add information on when this should happen.

I'm assuming with regard to the Libre, they've taken the output from the IMPACT study that Abbott did and incorporated that into the local course as well.

Again, it sounds like a local modification of the DAFNE course, and kind of adds to the issues that the APPG for diabetes has been concerned about with regard to variability of diabetes care.

Assumptions are best avoided. Personally, I will reserve my judgement until I have asked further questions about all of this. Generally, I have found the diabetes care standards to be very good so far. I have never been advised to reuse needles as many people in other areas have, or refused testing going strips as is often the case.

 

[tim2000s]

Hi @MickyFinn, just to be clear here, we're not having a go at you for this, but your team at the hospital is operating in a rather unusual fashion. If you consider the report that you made at the start of the thread, given the lack of clinical evidence and NICE guidance around a lot if it, it is unsurprising that people are making assumptions about the sources of the data you were given. But it's also worth nothing strongly that they are providing a lot of information that is not directly NICE guidance or necessarily best practice and is in some cases, complete falsehood.

Take what you were told about needles, for example:

Another interesting piece of info was regarding the needles and that the majority of people were switched to glucoRX needles. That should never have happened as it only applied to certain type 2 diabetics, but GP surgeries seized on it to cut costs. That's misleading too, because the actual cost of each needle, irrespective of brand is 1p to the NHS. It actually costs no more for them to prescribe us BD microfine needles than the terrible glucoRX ones.

This is not just slightly wrong. It's totally false. In the NICE guidelines for Type 1 in Adults it states at 1.8.4:

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]

Clinical factors may be issues with using certain needle types, for example. In addition needles cost varying amounts to the NHS, between 7p and 50p each (and you can check this on the NHS BSA website), so there is a reason for this statement.

To be told that the reason you are being given cheaper needles is because your GP has made a mistake, is sneaking in cost cutting and doesn't understand that they all cost the same is not only wrong, it's also incredibly damaging with regard to the relationship between the patient and the GP and is inexcusable from a professional healthcare team.

As I'm sure you understand, when this stuff is provided by HCPs, people trust it, and then once it becomes a secondary source on the internet, people use it as evidence of GP failure and lack of understanding, where that simply isn't the case.

As I mentioned, I'd really appreciate it if you could let me know which team it is as I'd like them to meet the England and Wales Clinical Director to discuss their approach and hopefully rectify some of the messages.

 

[MickyFinn]

To be perfectly honest, I was looking to see if anyone else had been given similar information. I do know there are discrepancies with how diabetes care is administered up and down the country.

As I said, I will be asking a lot more questions as I personally would ever be happy at having bg levels regularly below 5.0. I have so few hypos, one in the last seven months in fact, and I am rarely above 9.0, so I did question why I have to change anything at all at the session.

 

[noblehead]

You're assuming rather a lot there without knowing where exactly the info has come from. I was only provided with an overview and given a follow up appointment, and I intend to ask a lot of questions. Again, you're shooting the messenger.

No one is shooting the messenger @MickyFinn and what you've said has been very informative, I for one will look forward to the updates once you've been back to your hospital clinic. Best wishes.

 

[MickyFinn]

No one is shooting the messenger @MickyFinn and what you've said has been very informative, I for one will look forward to the updates once you've been back to your hospital clinic. Best wishes.

To be honest, I was only looking to see if these guidelines were indeed national and if anyone else had heard of them. Some on here seem certain they are most certainly not, so I now have no idea what the truth is. If it turns out I have flagged up a problem in my local area, I suppose I will have achieved something!

Either way, I always intended not to change my regime too much at all. Half unit insulin pens would probably be a good idea for me, as would an expert meter, but seeing as my hba1c is always around 6.5, I do not see a huge issue for me personally.

 

[noblehead]

Definitely get a half unit pen, the NovoPen Echo was the best pen I'd used, especially as it had a built in memory function

As for the Expert meter, it's a great meter and the bolus calculator is a great tool, tbh all the Accu-Chek meters are very good and never had too many issues using them.

 

[MickyFinn]

Definitely get a half unit pen, the NovoPen Echo was the best pen I'd used, especially as it had a built in memory function

As for the Expert meter, it's a great meter and the bolus calculator is a great tool, tbh all the Accu-Chek meters are very good and never had too many issues using them.

That sounds promising and I will definitely push for both. I think the half unit pen would be ideal as I am on very low doses, especially of levemir.