Any funding available for CGMs at all?

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Smiric

Smiric

Well-Known Member
Relationship to Diabetes
Type 1
Hey guys & gals,

I've recently bought myself a Freestyle Libre & the first sensor is approaching it's "expiry date" (I'm pretty sure it'd last longer, but it looks like the software will disable it regardless, which is more money for the company so I'm sure the CEO will be happy) ..anyway, I've got 1 sensor left, which'll last for 2 weeks, and if I have to continue buying them throughout the year it'll cost £1200 assuming they all work perfectly fine for their 2 week duration. Is there any funding at all available? I saw a post on a different diabetes forum saying you could forfeit your free testing strips and instead be given a (roughly) £1k annual stipend to spend on whatever means of testing you wish - which would probably cost me about £300-400 a year... but that post was from 2014 I believe (can't find it now, unfortunately) and I'm not sure whether this option is still available.

Anyone with any information that regards this, I shall cool with giant leaves and feed juicy purple grapes to!

Thanks!

=)
 
Smiric said:
I saw a post on a different diabetes forum saying you could forfeit your free testing strips and instead be given a (roughly) £1k annual stipend to spend on whatever means of testing you wish - which would probably cost me about £300-400 a year... but that post was from 2014 I believe (can't find it now, unfortunately) and I'm not sure whether this option is still available.
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It was never available and nope there is no funding for libre sensors or CGM's either. There are a few cases where as funding has been granted due to hypo unawareness but that's all.
 
Oh fantastic. Guess I'll just have to pay through the nose for relatively normal blood sugars for now then. Who do I contact to speed the process of the NHS changing from strips to CGM?
 
Smiric said:
Is there any funding at all available? I saw a post on a different diabetes forum saying you could forfeit your free testing strips and instead be given a (roughly) £1k annual stipend to spend on whatever means of testing you wish
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I haven't heard of that one, but it seems unlikely they'd let us do this as I don't think they've approved the accuracy of Libre and you'd still need strips for driving and to cross check the CGM. Personally I think they're missing a trick as the thing is an absolute godsend. I look at it as £100 a month rather than on a yearly basis - that makes me feel less nauseous!
 
I'll have a gander for it, cause I definitely read it somewhere. Was by a mod of another forum, who was testing the cost of a CGM if I remember correctly. Yeah I'm afraid £100 a month still activates my gag reflex. Try and be good with money & then have to pay 3 digits a month just to live a semi-healthy life! Not best pleased!
 
It only hurts because it's a one off payment. If you add up the money you spend regularly on drinks, and maybe fags or vapes, and takeaways, you'd be surprised by how good value the Libre is, though you may have to give up an indulgence or two to continue. I couldn't live without it, to be honest.
 
Eh? It's £100 a month, not a one-off payment? I don't spend any money on fags, vapes or takeaways. Have maybe 2 bottles of red a month now (used to binge drink a lot so trying to cut down). The Libre is awesome, don't get me wrong - it's just annoying (very) that I can't switch over the money that they'll give me for testing strips onto the CGM with a few strips for checking in certain situations - which would actually work out cheaper for the NHS considering the amount of strips I was using to try and maintain good sugar control.
 
I've not heard at all of this swapping test strips for a CGM. The Libre isn't approved my NHS so there's no way they'd let you do that anyway. The other CGMs such as Dexcom etc are v expensive and are only given on the NHS in exceptional circumstances.

I know it sucks. I wish I could get the Libre on the NHS but it's just not possible (yet)
 
Even if I prove that my control is better on the CGM they wouldn't?

Edit: And that it would save them (and me) money?
 
This website might help; http://www.inputdiabetes.org.uk/cgm/cgm-nhs-funding/

Short term loaning of a CGM is possible on the NHS but there's very strict criteria to meet to get one long term.

As far as I'm aware you have to prove you're "clinically different" from any other type 1 to get long term access to a CGM
 
Yeah I don't meet the criteria - apparently my control is "good enough"... Says the doc without diabetes wrecking his body every time his sugars are out of range. Easy for him to sit back and tell me that.
 
I know it's hard when you feel like you're not being supported by your health care team. Have you ever considered a pump? I know many people on this forum have significantly improved their blood sugar control on a pump.
 
I've not looked into a pump as of yet. Listened to one of Dr Bernstein's vids the other day & he doesn't recommend them because they can cause scar tissue and therefore affect insulin absorption. Haven't done my own research on the matter as of yet though. I don't mind doing MDIs though - they're a minor inconvenience. It's just the constant thought process/calculations that bug me - something that a CGM helps a lot with as it happens =P
 
If you're interested, maybe have a look on the pump section of this forum. Somebody there may be able to help better answer questions re insulin absorption and scar tissue.

Hopefully soon, more companies will start to develop technology similar to the Libre and the price will come down. The technology is so new which is why it's so expensive.
 
Shall do, thanks. Yeah hopefully - not getting my hopes up though, as things always take a lot longer than I expect =P. Do you know who/where I can get in touch with people to speed the NHS along?
 
Hi Smiric, there is no funding for Libre at present, and it is very difficult to get funding for CGM. Even with those there is still the need to finger test, so strips would be needed.

I use the Libre and find it helps me to head off a hypo or hyper I can see the direction of travel my BG is giong oats well as the reading (even if it is about 15 min behind my actual BG). As it is so much easier to use that finger prick I tend to check more often with just a swipe, and only test
- if I am about to drive ( requirement of DVLA who do not yet accept Libre)
- about to eat
- may be hypo

The sensors do indeed last exactly 14 days and are programmed to cut out exactly 14 days after being activated. I have had a couple of problem sensors but they have always been replaced by Abbott. I tend to put my next sensor in 48 hours before I want to activate it as I found the readings were a bit wobbly for the first couple of days (not due to BGs) and quite different from BG. I also try to keep well hydrated when using a Libre as this seems to improve the accuracy as well ( and it is a good plan anyway for health).

I hope that makes sense and helps
 
Smiric said:
I've not looked into a pump as of yet. Listened to one of Dr Bernstein's vids the other day & he doesn't recommend them because they can cause scar tissue and therefore affect insulin absorption. Haven't done my own research on the matter as of yet though. I don't mind doing MDIs though - they're a minor inconvenience. It's just the constant thought process/calculations that bug me - something that a CGM helps a lot with as it happens =P
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My understanding is you get pockets of tissue where absorption of Insulin is patchy by injections too.
 
Smiric said:
I've not looked into a pump as of yet. Listened to one of Dr Bernstein's vids the other day & he doesn't recommend them because they can cause scar tissue and therefore affect insulin absorption. Haven't done my own research on the matter as of yet though. I don't mind doing MDIs though - they're a minor inconvenience. It's just the constant thought process/calculations that bug me - something that a CGM helps a lot with as it happens =P
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That is a new one on me.
I have far fewer sore spots since switching from injections to the pump. I used to have bruises all over the place when injecting 4/5 times a day. I now put in one cannula every two days most of the time. I have the odd one that goes a bit skanky and just put in a new cannula earlier. By tracking across my abdomen I can make sure that I don't revisit a site for ages. So far so good.
 
Rosiecarmel said:
As far as I'm aware you have to prove you're "clinically different" from any other type 1 to get long term access to a CGM
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I tried that due to my Addison's disease and was told by the Pollock at the ccg that loads of diabetics took steroids so I was no different to anyone else and it wasn't fair to give me funding as no one else had it. I was very good and didn't point out that it wasn't fair I had Addison's as well as diabetes.
 
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