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Access to CGMs

J

johen

Well-Known Member
Messages
57
Type of diabetes
Type 1
Treatment type
Insulin
A year or so back, I participated in a trial for the Freestyle Libre. Since then I have been unable to access further sensors. First it wasn't available in my area. I joined the group for access for all as well as lobbying my MP. My MP wrote back to me and said he had personally asked the hospital to make it available for all. However my hospital are still refusing access for all. You have to be pregnant or TTC, have loss of hypo symptoms, or have to take 8+ tests per day. I suffer with painful hands and fingers and finger pricking is extra painful so I do not test as often as I should. My consultant said it was lack of funding so they had to hold the purse strings very tight. He also said that Abbott had not come up with enough evidence to prove it was beneficial enough in improving control. I would be interested to know what the current UK situation is concerning CGMs and access to them. Do I just live in the wrong postcode?
 
Hello, Yes it does depend on your CCG and hospital area. There are still areas in England are not prescribing the libre sensors despite it being available on the NHS. There’s a few areas that are quite liberal and prescribing it to those fit the criteria. I have sensors since 10th June so I’m not facing any issues. However at my old hospital, very very few type 1s have been able to get it due to the lack of funding.
 
Assuming you are in the UK:- NHS - (E I think) have provided additional funding to CCGs, funding is a percentage of the number of T1's in their area. Your CCG is based on your GP and you can find that on a search engine, you could look up the NICE guidelines to get an idea of criteria. The CCG will have a commissioning statement regarding CGM's and Libre on their website. Also your consultant may be able to apply using an Individual Funding Request (IFR) due to the pain in your fingers. Hope this helps.
 
 

My consultant today said he'd love to let everyone have it but he couldn't. He didn't actually apologise and I was left feeling it was just hard cheese. Ive been T1 30 years and have had a retinal bleed this year and I really want to improve. I left there ready to cry.
 

Common alternative blood testing sites instead of finger pricking include the palm, forearm, upper arm, thigh, and calf.
 
ert said:
Common alternative blood testing sites instead of finger pricking include the palm, forearm, upper arm, thigh, and calf.
Click to expand...
I could try my thigh or calf I guess but rest of hands and arms are as painful.
 

If you feel you meet criteria but are not being given assistance you could try contacting @parthaskar via twitter. Sorry I dont know how to add the link, but copy and past it into your browser. Have you done a dafne course or similar, they might also be able to help you. Feel free to PM me if you need any more help. Sending hugs and hope for some better news soon x
 

Thanks for the response. Unfortunately I don't fit their very strict criteria despite having problems, T1 30+ years, retinal bleed, painful and stiff hands and arms, fibromyalgia, aspergers.....I could add to that lol...but I already sound like a wreck . Thanks though, I have done dafne but a few years since and that still helps but it's just the testing I'm stuck on. I would like to say I've tried taking it from leg but I haven't bothered yet, can't seem to get going today.
 
The Libre is available to purchase from pharmacies for £46-60 (phone around to get best price) if your in a position to do so. You don’t need to purchase a Libre reader if you have a compatible phone with NFC. Maybe just a couple of sensors to give you 4 weeks detailed readings to get you on track with your numbers and rest your fingers may help longer term as well. Also if you do well with the Libre it may give you some evidence to take to your doctor that it does help you and you should be able to get this on prescription.
 

Thanks for the suggestions. I did buy one from Amazon as I had previously rang half a dozen pharmacies and no one knew anything. I may have to take my meter and booklet that I have from the trial and go to the pharmacies on foot. Even though I can't afford to self fund continuously, your suggestion may be possible. My control was definitely better when I had the last sensor and I started doing a lower carb diet but it fizzled out again once I didn't have the sensor. The evidence, as you say, could be helpful.
 
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