Continuous glucose monitoring in Cornwall

[glynisd]

Is anyone out there using one of those fancy new machines to continuously measure their glucose (cgm)? I've been type 1 for over 20 years and the only way I keep reasonable control is blood testing up to 10 times a day - and then I don't always know whether its rising or falling. I know I'll probably have to pay, but I just don't know where to start in terms of getting advice. I've been in Cornwall 3 years and so far I haven't had a referral to anyone who knows about cgm - does anyone know if there's someone at Treliske who would know about this?
.

 

[steve_p6]

NHS are not going to cover it unless you are in deperate straits with Hypo Awareness problems.

Your best bet is to order a freestyle libre, 140 quid for 4 weeks and see if it gives you what you are looking for.

My experoence is it really puts you in control on so many levels.

 

[steve_p6]

Ps that was starte pack cost. Sensors are about 50 pounds to last two weeks.

 

[CarbsRok]

Is anyone out there using one of those fancy new machines to continuously measure their glucose (cgm)? I've been type 1 for over 20 years and the only way I keep reasonable control is blood testing up to 10 times a day - and then I don't always know whether its rising or falling. I know I'll probably have to pay, but I just don't know where to start in terms of getting advice. I've been in Cornwall 3 years and so far I haven't had a referral to anyone who knows about cgm - does anyone know if there's someone at Treliske who would know about this?
.

Lol Treliske is about a century behind any other trust regarding diabetes care, Cornwall CCG does not and will not provide CGM's for any patient no matter what the circumstances are. I was told that if I was given one then it wasn't fair as no one else had one. My GP even pointed out to the CCG that it wasn't fair I had Addison's disease either and very few people in Cornwall had the double whammy of type 1 diabetes and Addison's.
I managed to get my funding via a charity.

 

[glynisd]

NHS are not going to cover it unless you are in deperate straits with Hypo Awareness problems.

Your best bet is to order a freestyle libre, 140 quid for 4 weeks and see if it gives you what you are looking for.

My experoence is it really puts you in control on so many levels.

thanks Steve that's really helpful. how long have you been using it? And do you swim? I do, which is why I haven't tried this before.......or is it water proof?

 

[glynisd]

Lol Treliske is about a century behind any other trust regarding diabetes care, Cornwall CCG does not and will not provide CGM's for any patient no matter what the circumstances are. I was told that if I was given one then it wasn't fair as no one else had one. My GP even pointed out to the CCG that it wasn't fair I had Addison's disease either and very few people in Cornwall had the double whammy of type 1 diabetes and Addison's.
I managed to get my funding via a charity.

That's a bit depressing - but I'm glad you got your funding in the end. I'm going to keep investigating on my own then. So in the end do you use one and find it helps?

 

[iHs]

Lol Treliske is about a century behind any other trust regarding diabetes care, Cornwall CCG does not and will not provide CGM's for any patient no matter what the circumstances are. I was told that if I was given one then it wasn't fair as no one else had one. My GP even pointed out to the CCG that it wasn't fair I had Addison's disease either and very few people in Cornwall had the double whammy of type 1 diabetes and Addison's.
I managed to get my funding via a charity.

My CCG also wont fund cgm even with if there is a clinical need and the NICE criteria for cgm is met. At the moment, cgm is too expensive and many CCGs dont have enough money available.

 

[T1DM2012]

Hi, I too am from Cornwall with T1DM. I started using the libre last month and it is fantastic. I swim lengths daily for about 1 hour and just cover the sensor with a pad then opcite and H2O rock tape - The company however say it can be submerged for 30 minutes. I also have a very physical job. The sensors have stood up to all of this with no problems at all - I never thought for one minute they would when I purchased it so am very impressed!! I do however tend to use it more for trends and go with my meter / gut feeling as it tends to read about 2mmol lower generally then what I am. The insight it has given me however to various things such as how stress time of the month effect me has been amazing. For £140 its worth a try if you can afford it. Best wishes.

 

[Snapsy]

@glynisd in answer to the question in your second post, I have a Libre, and swim a short distance five times a week - the sensor is fine in the water for up to 30 minutes, according to Abbott, and as I'm new to the Libre I haven't *quite* yet dared to exceed this - but so far, so good. Thinking about it, what with showering afterwards, it's probably wet for quite a bit more than 30 minutes, actually. I'm on my second sensor (it's very much a new toy for me) and it's all been fine.

I'm loving the Libre. I'm finding I'm much, much more relaxed about testing now - rather than testing 12 times a day I'm down to between 6 and 8 tests a day - the rest of the time I'm using the Libre (all the time!!!!) to get an idea of which direction I'm heading. I 'bip' to see if I need to test, sometimes - it saves a test strip. A lot of my blood testing has always been 'just to see', so this device is proving a Godsend. It's helped me to identify patterns, and make adjustments accordingly. It's reading around 20-25% higher than my blood tests, but as I'm aware of that, it's not a problem. I don't see it as an alternative to blood testing, but oh boy, it's a fabulous addition to the array of tools I'm already using to manage my diabetes.

I'm bordering on the obsessive where it comes to my 'numbers', and my control. Ironically the Libre has made me lighten up on myself a bit..... and that's FABULOUS.

Oh, and I did I mention that I like it?!

 

[CarbsRok]

That's a bit depressing - but I'm glad you got your funding in the end. I'm going to keep investigating on my own then. So in the end do you use one and find it helps?

Hi yes I use one and find it very helpful.
Not sure where you are in Cornwall, but care is better at Exeter, Plymouth and North Devon. Obviously you wont get a CGM but knowledge and care is so much better all round.