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FreestyleLibre2

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V

Vadan

New Member
Relationship to Diabetes
Parent of person with diabetes
My son has been a diabetic for over 26 years, he was diagnosed at the age of 2. He has asked his local diabetes healthcare team if he can have a freestyle libre2. They declined because he was still on 2x a day injections.

His fingers are in a right old mess after 26 years of testing his sugars, has anyone got any advice on how we can appeal, so that he can get these on the NHS.

Any advice will be gratefully received.

Happy Easter
 
H
Vadan said:
My son has been a diabetic for over 26 years, he was diagnosed at the age of 2. He has asked his local diabetes healthcare team if he can have a freestyle libre2. They declined because he was still on 2x a day injections.

His fingers are in a right old mess after 26 years of testing his sugars, has anyone got any advice on how we can appeal, so that he can get these on the NHS.

Any advice will be gratefully received.

Happy Easter
Click to expand...
Hi, Vadan and welcome to the forum. The criteria for getting the Libre are here, in Annexe A. I can’t see any mention of what type of insulin regime you need to be on, but I can imagine with a two a day one, your son's team might query why he would have to test 8 times a day. (He well might, if he has to check for falling or rising blood glucose levels so he can adjust his eating, but I think healthcare teams tend to overlook this).
 
He is on Humulin M3, which he has been on for many years.

Thank you for the link Robin
 
Maybe the thing to start with is why he is on the regime of 2 injections a day.
I believe this is unusual nowadays and considered restrictive. A basal bolus regime requires more injections but gives you the freedom to eat when and, to the same extent as the non-diabetic population, what you want.
 
helli said:
Maybe the thing to start with is why he is on the regime of 2 injections a day.
I believe this is unusual nowadays and considered restrictive. A basal bolus regime requires more injections but gives you the freedom to eat when and, to the same extent as the non-diabetic population, what you want.
Click to expand...
The reason why he is that the 2 injections suited him as he didn’t want to take insulin etc to work. His hbc1 has always been very good. But thank you for the information
 
Hi and welcome from me too.

How well is his diabetes managed by just 2x Humulin M3 injections a day? They should not be looking just at his HbA1c but also how frequently he hypos. If he is well managed on his current insulin regime then you need to look at how many times a day he needs to test his BG levels to maintain that good management. If he is only needing to test 3 or 4 times a day then they are unlikely to prescribe the Libre unless he perhaps works in an environment where it is unsanitary and he perhaps doesn't have access to handwashing facilities to test at short notice. I am thinking of farm workers and building site workers and men who work down the sewers etc.
If his diabetes is managed well on his current insulin regime but his diet and lifestyle are restricted because of it or his diabetes is poorly managed on his current regime, then he might have a case to change to a basal/bolus insulin regime which will enable him to be more flexible in what and when he eats and exercises etc but it involves more injections and more thought as he would need to learn to carb count and adjust his insulin himself. Most Type 1 diabetics and some Type 2s are now on this system.

If he is happy with his current insulin regime and managing it well, there is the option to use areas of the body other than the fingers for doing BG tests. I believe the side of the palm, or wrist or base of the thumb are possible sites. I believe you need a different attachment for your lancing device to do this but some already come with that attachment. It is usually the clear spare end bit in the kit that no one seems to know what it is for.
 
Vadan said:
The reason why he is that the 2 injections suited him as he didn’t want to take insulin etc to work. His hbc1 has always been very good. But thank you for the information
Click to expand...
If he didn't want to take insulin to work then couldn't he have just had a low carb meal while there that didn't need insulin?

I'm in Scotland so not sure it applies nationwide but this is included in the section
If you are on twice daily insulins (e.g. humalog mix 25, humulin m3 & novomix 30) you are not currently eligible. If you would like to consider changing to multiple daily injections of insulin, this can be discussed at your next clinic appointment.

So it well may be that fact and that he'd need to change in order to obtain it xx
 
Vadan said:
The reason why he is that the 2 injections suited him as he didn’t want to take insulin etc to work. His hbc1 has always been very good. But thank you for the information
Click to expand...
 
He has always been very reluctant to change but I will have a chat to him about going over to the new insulin regime.
it’s also about not revealing to people that he is a diabetic as he got bullied at school. he has always wanted to be very private about administering insulin
 
Personally I think it is quite important that the people around you are aware that you are diabetic from a safety point of view. I can understand how being bullied at school made him more reserved about it but one thing I found really helped me be more open was spending some time with other diabetics (both virtually here on the forum but also in person) and feeling more normal as a result and being encouraged to test and inject in public. This was one of the main benefits of attending the DAFNE (Dose Adjustment For Normal Eating) course. We were encouraged to share our experiences and I was really liberated by seeing younger women just lifting their top to expose a bit of midriff and injecting very matter of factly in public when I would have always gone into the toilets to inject before that. I have since done it in restaurants occasionally (not much chance recently) and I actually feel like I am pioneering rather than feeling ashamed or embarrassed.
We are coming up to summer and the Libre is quite obvious when applied to the arm if you are wearing a vest or short sleeves. I get enquiries about mine sometimes. How would your son feel say at the gym or swimming with it on display if he wants to keep his diabetes private?
 
I understand that last comment - BUT!! ever heard of Disability Discrimination Law? Whether he or I personally feel we are disabled, we are classified as being so by Law and hence should we suffer from discrimination those perpetrating it are breaking the Law - and in any event all workplaces are absolutely legally obliged to deal with that - it's ultimately a sackable offence under contracts of employment.
 
Eating establishment with tablecloths are getting rarer by the minute cos they were always useful for concealment purposes whilst eating out and testing or jabbing I found - but tough! If you don't like seeing me test etc, up to you to close your eyes or move - not me, mate!
 
I imagine this restriction on not accessing libre whilst on two injections a day is because if the libre say alerted him to being high, on two injections a day he can’t do anything about it. He can’t take extra mixed insulin as a correction. If he was on seperate insulin’s and alerted to a high he could take extra fast acting insulin as a correction to bring the blood sugar down. Switching to seperate insulin’s would give more flexibility, though if he prefers to stay on mixed insulin and isn’t eligible for the libre, it can be purchased / trialled online.
 
Welcome to the forum @Vadan

I wonder whether it might be worth self-funding a starter pack, or seeing if a trial is available. If successful it would also give him evidence to share of the positive impact that Libre had.

Ultimately the successful use of Libre or Libre2 seem to be about making diabetes more an ‘up front’ part of you - scanning frequently, interpreting the information, making adjustments and corrections on an ongoing basis during the day. So before spending a lot of effort trying to overturn the decision, and looking into switching to multiple daily injections in order to qualify, it might be worth him having a go and seeing if it was an approach that suited him?
 
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