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Type 1 CGM funding - no hypo awareness

sofs888

sofs888

Well-Known Member
Messages
53
Type of diabetes
Type 1
Treatment type
Insulin
Hi all,

I'm a type 1 (newly diagnosed) and Got my 6 month check up (it's actually about 9 months now.. earliest they could get me in!) tomorrow.

I have had more or less NO education apart from one dietician appointment a week after diagnosis so have been pretty much in the dark this whole time and playing a guessing game..

I am self-funding a cgm (Dexcom) and it has definitely saved my life - I have no hypo awareness 99% of the time.

I am reliant on my Dexcom but obviously it is very expensive and not something I want to be paying £160 a month for in the future - do clinics provide funding/assistance for cgms is my main question?

I feel really neglected by my clinic and that because I'm 22 I'm in a bit of limbo - not cared for by the adolescents team and also not being cared for by the adult team... Just very worried about the long term issues that my highs can cause - average sugar is usually around 8/9 - not great!!

Thank you in advance :)
 
No funding for Freestyle libre in Suffolk apparently last area in country to get funding so no choice but to pay for yourself despite situation! Frustrated by this as weight gain due to managing hypos hypers eating much less than I used to but no one able to help. I do exercise daily too. Had diabetes since 4 years of age now 57 years. Like you when young had no warnings but developed more awareness as young adult hopefully you will too, good luck hope it gets easier for you.
 
Heathero said:
No funding for Freestyle libre in Suffolk apparently last area in country to get funding so no choice but to pay for yourself despite situation! Frustrated by this as weight gain due to managing hypos hypers eating much less than I used to but no one able to help. I do exercise daily too. Had diabetes since 4 years of age now 57 years. Like you when young had no warnings but developed more awareness as young adult hopefully you will too, good luck hope it gets easier for you.
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I'm in St Albans and we don't have it either. My GP said from April it won't be postcode lottery so I should get them on prescription. Chemist looked at me like I was mad! Emm no St Albans is a fluent area so you miss out!
 
That’s interesting when I enquired was told possibly funding later in year but who and why people get it would have to be sorted out as well as funding so even then may not get it! Purchased one but too expensive to use regularly currently do blood tests 8-10 times a day.
 
I pay for mine, but in last two months they have gone from £40 for two weeks to £45
Cost is too much but really hard to actually get.
GP said it's on a at need basis, I will see what happens in April.
Hopefully we can all get on prescription!
 
Just checked it definitely says no longer postcode. Depends on the need?
MIght show to my chemist
 
sofs888 said:
Hi all,

I'm a type 1 (newly diagnosed) and Got my 6 month check up (it's actually about 9 months now.. earliest they could get me in!) tomorrow.

I have had more or less NO education apart from one dietician appointment a week after diagnosis so have been pretty much in the dark this whole time and playing a guessing game..

I am self-funding a cgm (Dexcom) and it has definitely saved my life - I have no hypo awareness 99% of the time.

I am reliant on my Dexcom but obviously it is very expensive and not something I want to be paying £160 a month for in the future - do clinics provide funding/assistance for cgms is my main question?

I feel really neglected by my clinic and that because I'm 22 I'm in a bit of limbo - not cared for by the adolescents team and also not being cared for by the adult team... Just very worried about the long term issues that my highs can cause - average sugar is usually around 8/9 - not great!!

Thank you in advance :)
Click to expand...

As others have said its dependent on CCG's and then you have to fulfill certain criteria, which it sounds like you do. Frequent hypos, testing 10+ times a day etc.

In regards to hypo awareness, this can usually be regained if you manage the levels well for a couple of weeks (minimize time in hypo) the body adjusts pretty quick.
 
Muneeb said:
In regards to hypo awareness, this can usually be regained if you manage the levels well for a couple of weeks (minimize time in hypo) the body adjusts pretty quick.
Click to expand...

My diabetic specialist told me to keep me levels between 6 and 12 for a while (she didn't say how long). Have reverted to lower levels now but haven't had any bad hypos for a year and do wake at night when it gets to low 3s, and notice in day time when it's in high 3s.
 
Firstly @sofs888 , you need to be demanding with your clinic when you see them and make sure they know how little help you've had. I suggest going in with a list of what you want to talk about/what you want to get out of the appointment. It will help you focus the HCP.

Secondly, while Libre is funded at a CCG level, full CGM with alarms is done on an individual funding request basis. One of the criteria for this is that you must be hypo unaware, but be aware that if you drive, the clinic is required to let the DVLA know that you are hypo unaware and you will have your driving license revoked. You should really do this anyway, if you have a driving license, as you're unaware when you might lose control.

In terms of Libre, while it is a free for all at the moment, country wide rules will be introduced at the start of April, and all clinics/GPs will have to adhere to them. We don't know what these are yet, but it will be worth making sure you finger prick 8 times per day between now and then to ensure you're in with a good chance!
 
I got the freestyle libre on a trial over month ago and fit the criteria of at least 8 times a day testing my levels, and have to say that in the 8 yrs i have had type one diabetes (i am 47 yrs old now) this is the first time i have ever seen / understood my blood sugar levels and the effects of insulin and food. However after been on the system now for 5 weeks i get a phone call from my doctors saying that the locum doctor who saw me, incorrectly issued me with a prescription for the sensor and i had to go to my diabetes centre and they would give me the prescription, i call them and they said its the doctors. now both refuse to issue both and i am losing it now and back to finger pricking when my next sensor has expired.

So frustrating as this is nothing to do with patient care, and only to do with funding, and since i have been struggling for a few months know, this was a small light at the end of the tunnel in trying to get a more settled level.
 
skhwoody22 said:
I got the freestyle libre on a trial over month ago and fit the criteria of at least 8 times a day testing my levels, and have to say that in the 8 yrs i have had type one diabetes (i am 47 yrs old now) this is the first time i have ever seen / understood my blood sugar levels and the effects of insulin and food. However after been on the system now for 5 weeks i get a phone call from my doctors saying that the locum doctor who saw me, incorrectly issued me with a prescription for the sensor and i had to go to my diabetes centre and they would give me the prescription, i call them and they said its the doctors. now both refuse to issue both and i am losing it now and back to finger pricking when my next sensor has expired.

So frustrating as this is nothing to do with patient care, and only to do with funding, and since i have been struggling for a few months know, this was a small light at the end of the tunnel in trying to get a more settled level.
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That's awful I'm so sorry it's being taken away from you! I hope they manage to sort it out soon :(
 
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