Libre sensor prescription for type 2 non insulin

[Valeee]

Hi,
I've seen a few posts regarding getting the libre sensor on prescription, so I'm trying to get some advice.

My mother is almost 90 and has been type 2 for over 40 years and always well controlled with medication.
Until June this year when we were told that her meds would be changed.

Within 2 weeks she had hypo'd with a reading of 0.7, was comotose and spent days in hospital.

Since then, its been a struggle regulating her levels, with regular adjustments of her medication.
We've been getting readings ranging from 3.0 to 25.4!

So, from occasional pinprick tests, we've gone to several times a day and she hates it!

Found the libre system. She likes it, but at £100 per month, it's really out of our budget.
Asked if she could get it prescribed. Told no as she's type 2.
But I see that some people with type 2 are getting it prescribed.

Can anyone advise on whether she is eligible and how I can get this system on prescription for her?

Any help would be much appreciated!
Thank you

 

[Ymdawd]

Hi,
I've seen a few posts regarding getting the libre sensor on prescription, so I'm trying to get some advice.

My mother is almost 90 and has been type 2 for over 40 years and always well controlled with medication.
Until June this year when we were told that her meds would be changed.

Within 2 weeks she had hypo'd with a reading of 0.7, was comotose and spent days in hospital.

Since then, its been a struggle regulating her levels, with regular adjustments of her medication.
We've been getting readings ranging from 3.0 to 25.4!

So, from occasional pinprick tests, we've gone to several times a day and she hates it!

Found the libre system. She likes it, but at £100 per month, it's really out of our budget.
Asked if she could get it prescribed. Told no as she's type 2.
But I see that some people with type 2 are getting it prescribed.

Can anyone advise on whether she is eligible and how I can get this system on prescription for her?

Any help would be much appreciated!
Thank you

As I have said elsewhere it depends what Trust/Health Board area in which you live. Some allow it and some do not. Guess its a sort of post code lottery. In Fife where I live it is only allowed for diabetics who are on separate insulins. If you are on combined/mixed insulin then - TOUGH as you are if just on tablets like gliclazide, glipizide.

For two or three years I paid for the libre 2 myself but as you point out it is extortionately expensive. Guess I was lucky as I managed to get separate insulins which does qualify.

 

[Valeee]

As I have said elsewhere it depends what Trust/Health Board area in which you live. Some allow it and some do not. Guess its a sort of post code lottery. In Fife where I live it is only allowed for diabetics who are on separate insulins. If you are on combined/mixed insulin then - TOUGH as you are if just on tablets like gliclazide, glipizide.

For two or three years I paid for the libre 2 myself but as you point out it is extortionately expensive. Guess I was lucky as I managed to get separate insulins which does qualify.

Thank you for replying.
It's quite unfair. Health care shouldn't be a lottery based on where you live. I'm glad that you managed to get yours prescribed.

But in these difficult times, it's far too expensive to pay out over £1200 per year. (not sure why they're are so expensive either)
We're doing it now, but something will have to give eventually.

I wondered if any one had any legislation or guidelines I could use, to convince the local health Trust that this would be in her best interests??....

 

[xgemmiex]

Awwww how sad for you all after managing her diabetes so well for such a long time.
I can't offer any help unfortunately. I am type 2 and although a specialist nurse friend of mine says in my area prescribing the libre is on the cards, my actual nurse point blank refused and said it's just for type 1s and those with learning disabilities.

I wonder if it would be worth writing to the practice, so effectively go over your diabetes nurse head to those that run thr practice, I'm just thinking aloud now though.
I really hope you find a way.

 

[Rokaab]

I wondered if any one had any legislation or guidelines I could use, to convince the local health Trust that this would be in her best interests??....

Unfortunately they are just too expensive to be provided for every diabetic as there are now a lot, so i reckon they have made the cut off to be a user of insulin as insulin can easily cause hypos - blood testing/scanning is also a legal requirement for driving for those on insulin

If your mother is not on insulin it will be a lot more more difficult, you could try seeing if a special request can be made with mitigating circumstances but i suspect that may come down to who you end up talking to rather than legislation - and I'm not convinced hating blood tests is a mitigating circumstance, I hated blood testing for 35 years (give or take) before CGM's even existed.

Not even all Type1's on insulin have managed to get them on prescription yet, let alone diabetics not on insulin

 

[Valeee]

Awwww how sad for you all after managing her diabetes so well for such a long time.
I can't offer any help unfortunately. I am type 2 and although a specialist nurse friend of mine says in my area prescribing the libre is on the cards, my actual nurse point blank refused and said it's just for type 1s and those with learning disabilities.

I wonder if it would be worth writing to the practice, so effectively go over your diabetes nurse head to those that run thr practice, I'm just thinking aloud now though.
I really hope you find a way.

Thank you so much for your kind reply. It's so easy these days for people to forget how easy it is to be supportive, so I really appreciate your response.
Its been a bit of a journey. We almost lost her and I was so angry that it was caused by a change put on us, rather than a natural event.
I really feel sad for people that don't have family or friends to advocate for them.
I truly believe if it hadn't been for me being so persistent, she probably wouldn't be here now.
Sadly, the hypo has left her with some confusion, but with a bit of tlc, she's getting there.
I hope that you'll soon be in a position to go over your nurses head too. Sometimes our medics forget how difficult and worrisome it can be, to manage something like diabetes.
Sending you hugs and thanks

 

[Valeee]

Unfortunately they are just too expensive to be provided for every diabetic as there are now a lot, so i reckon they have made the cut off to be a user of insulin as insulin can easily cause hypos - blood testing/scanning is also a legal requirement for driving for those on insulin

If your mother is not on insulin it will be a lot more more difficult, you could try seeing if a special request can be made with mitigating circumstances but i suspect that may come down to who you end up talking to rather than legislation - and I'm not convinced hating blood tests is a mitigating circumstance, I hated blood testing for 35 years (give or take) before CGM's even existed.

Not even all Type1's on insulin have managed to get them on prescription yet, let alone diabetics not on insulin

Thank you for the information. I appreciate what you're saying.
However it's not so simple as her just hating the pinpricks.
At almost 90, her skin is fragile and she finds them painful. They were bearable at once or twice per week. Not so much at 5 times per day!
The confusion caused by the change of medication and hypo has also made it far more difficult to explain to her why we are having to test her so frequently.
So I'd say that there are several factors, all brought about by a change that she had no control over. Her medication was stopped and changed and within 2 weeks she had almost died!
Also, someone has to do these tests, she's unable to do so herself, so it's the impact on others also.
Maybe the NHS should be negotiating to make the sensors more affordable - there aren't exactly any working parts!
The financial and time impact is on me, as I want to make her last years as happy and comfortable as possible.
She may not be on insulin, but she also has other needs that people that are on insulin may not.
But thank you for your input

 

[ajbod]

My understanding is that legally if you are on ANY medication that can cause hypos, then CGMs can be prescribed.
You have evidence of a severe near fatal hypo, and subsequent lows within the hypo range, with wild swings in levels. The diabetic nurse spoke of "learning difficulties" and as your mother has been left confused after the major hypo i would consider that another argument in your favour. I would write to the practice manager and point out they have a duty of care to your mother, which they are currently not fulfilling, and that without a CGM she is at severe risk of death due to hypo or hyper coma.

 

[Valeee]

Thank you so very much!
This is the kind of information that I was asking for.
Its a case of, if you don't know, you don't know!
This is practical and doable and I am absolutely going to try it and see how I get on.
If successful, I'll report back, so others know its possible too.
Thank you, once again.
Much appreciated!!

 

[becca59]

I suppose there is no way your mother could return to her original medication. It seems so sad that the age of 90 they messed around with her. I am not really sure what they were hoping to achieve.

 

[Valeee]

7 June 22 - notified by this text

"Due to recent national shortages of Tolbutamide, we have switched you over to a new medication called Repaglinide. This medication is used to help manage your diabetes and should be taken WITH FOOD. This tablet will replace your Tolbutamide. If you have any questions, please contact us further."

20 June 22 - found unconscious and admitted to hospital for a week, due to hypo (0.3)
Has remained unregulated ever since...

That's the degree of info sent for a 89 year old. Told NHS unable to prescribe previous meds any longer, not due to shortage. It would be interesting to know if anyone still gets Tolbutamide???

 

[Valeee]

I've just sent a rather lengthy email to the practice nurse and will share the outcome.

Thank you all.

 

[Ymdawd]

Unfortunately they are just too expensive to be provided for every diabetic as there are now a lot, so i reckon they have made the cut off to be a user of insulin as insulin can easily cause hypos - blood testing/scanning is also a legal requirement for driving for those on insulin

If your mother is not on insulin it will be a lot more more difficult, you could try seeing if a special request can be made with mitigating circumstances but i suspect that may come down to who you end up talking to rather than legislation - and I'm not convinced hating blood tests is a mitigating circumstance, I hated blood testing for 35 years (give or take) before CGM's even existed.

Not even all Type1's on insulin have managed to get them on prescription yet, let alone diabetics not on insulin

Bear in mind that some diabetic tablets, sulphonyureas such as gliclazide, are known to cause hypos. It is not just insulins

 

[Rokaab]

Bear in mind that some diabetic tablets, sulphonyureas such as gliclazide, are known to cause hypos. It is not just insulins

I know that, but I think the NICE guideline only mention those on insulin, though I may be wrong

 

[MeiChanski]

Bear in mind that some diabetic tablets, sulphonyureas such as gliclazide, are known to cause hypos. It is not just insulins

NICE guidelines atm state type 2’s on insulin could have the sensor prescribed. No mention of blood sugar lowering tablets. However that doesn’t stop OP from trying, funding varies from CCG to another CCG.

 

[finzi1966]

Also, I think it might be worth tackling the problem from the opposite direction. Does your mothers GP realise (properly realise, as in, joining the dots - I’m sure they were “informed”) that your mother had a life threatening hypo? Hypos in the elderly are generally feared profoundly by HCP’s - there is simply no justification for risking hypos in a 90 year old. That’s why the HbA1C targets are higher in the elderly, because (to be frank) tight blood sugar control to avoid complications 10-20 years down the line is not really the top priority. So aside from pleading for a CGM (and I have every sympathy with why you would want to, and hope they are obliging) I think a conversation needs to be had with your GP about WHY she is on a tablet that risks hypos at all?

 

[Valeee]

Thank you all for your input. Its been really helpful.
This is my 1st time having to address mums diabetes, as it was well controlled for several decades. I don't know enough about medication, or what the alternatives are, so my only option has been to try and keep a good eye on her levels.
My mum has full time care during the day, but once she has been put in bed for the night, she is on her own.
Its not just about her finding the tests painful, there's no way of monitoring her, overnight, apart from with a CGM.
She's waking with levels of 3.0-4.0, but has gone as low as 2.7. The nurse said anything under 4 is a concern, but in the same breath said if she feels ok, not to worry. So when am I supposed to know there's a problem, when she can't wake up again?
I pay for my mums care and try to do the best that I can to keep her safe and happy, without being a burden on the NHS. But an extra £1200 per year is a stretch for me. I recently bought 7 sensors at a cost of over £300.00.
I have emailed the practice manager, using all the info on this thread. I can only hope for a positive outcome.
But if they refuse, I suppose I have no choice but to continue as I am doing, as it gives us both peace of mind. I can only try.

 

[Ymdawd]

7 June 22 - notified by this text

"Due to recent national shortages of Tolbutamide, we have switched you over to a new medication called Repaglinide. This medication is used to help manage your diabetes and should be taken WITH FOOD. This tablet will replace your Tolbutamide. If you have any questions, please contact us further."

20 June 22 - found unconscious and admitted to hospital for a week, due to hypo (0.3)
Has remained unregulated ever since...

That's the degree of info sent for a 89 year old. Told NHS unable to prescribe previous meds any longer, not due to shortage. It would be interesting to know if anyone still gets Tolbutamide???

Daughter is a pharmacist so I will find out if tolbutamide is still available.?

 

[Ymdawd]

Daughter is a pharmacist so I will find out if tolbutamide is still available.?

Apparently it is still available, at least up here in Scotland.

 

[Valeee]

Thank you so much for checking. And there's no difficulties with getting it? Ie, shortages or no longer being manufactured?
I was basically told that they can't obtain it anymore, hence the change.