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Afternoon all.
My 8 year old daughter is Type 1 diabetic and we have been using the Freestyle Libre system recently, we believed having given all of our details at an open evening and receiving emails from them that we were "registered" with the company.
Once the sensors we received on signing up were used, we bought direct from Abbott, but due to some NHS Trusts now prescribing the system, whilst our local Norfolk NHS Trust does not, they cannot keep up with the demand and Abbott are only selling to customers previously registered and we are on a waiting list to hopefully buy direct in future, but it is a long list.
So we are currently buying the sensors that last a fortnight for £70 a pop off Amazon. So not is it bad that some NHS Trusts give the sensors on prescription, they are taking most of the stock, so those stuck in the other NHS Trusts that cannot purchase them direct, are being forced to pay re-sale prices like a concert ticket!
Anyone have advice about where they can be purchased cheaper than £70.00, Boots now only does them on prescripton and Superdrug has sold out, and they are changing hands on ebay for £100!?
Direct from Abbott for 50 quid (vat back so 45-ish, but delivery for 2 and the 2 sensors are 100 a month).
Unsure what you register for apart from an account with Abbott.
Doesn't help but maybe flag to Abbott about Amazon price as I'd suggest that is an issue.
I've been using them since they came out and self-funded for about 2 years, been on prescription for most of this year...the whole process has been problematic but it appears to work.
Hopefully you won't have to wait much longer to get sorted. My first order for sensors ended up coming from France as UK had no stock.
Victim of it's own success.
Apparently there is a decent discount for pharmacy if they order 10 or more sensors...trying to convince doctor that this is a saving is impossible so standard prescription appears to be 2 sensors at a time.
We've been using the system for 2 years, but like you, our NHS Trust isn't prescribing them. I can currently get them but only 2 at a time and delivery isn't quick. My son is currently on a break from them - he's nearly 18 and has been going through a period of being too high, CBA plus eating too much , yet is thin. Just one of those situations so keeping it simple - just pump and blood tests.
We even had it scan by his phone and use nightscout and another device called an Ambrosia Systems 'blucon' that automatically reads the libre remotely and sends the data to the phone (like a cgm) so I could keep an eye on his levels from anywhere, but he wasn't even bothering.
I think there is a massive supply issue. Not ordered any for a few months as we had five, now only one, but have been waiting for a long time for our Trust.
Can't help with anywhere cheaper as I just think they can't make enough
If you have a spare modern mobile phone, Dexcom are going a great price on a G6 starter pack at the moment. Worth grabbing that to use for a few weeks while you wait for Libre stock to sort out. Order direct.
@Dick Barton - the issue is we cannot buy direct from Abbot anymore, it is only customers that were already registered with them, they are fulfilling them first as they are low on stock and you have to register an interest to be a new customer, so you have to buy elsewhere.
It is bad enough that it is a postcode lottery as to whether they prescribe them, but for those areas that don't to then have to pay an extra £20+ per sensor each fortnight is ridiculous.
@ Kelvin - i will look at the Dexcom system now thanks.
@fossy, i am dreading my daughters teenage years, she is bad enough now when she gets a growth spurt as is very strong willed, what she is going to be like when she is 18 fills me with dread, with all those hormones going wild! Did your lad not like the system, you'd think at that age when they are self-conscious that the scanner would be less conspicuous?
@scud, no he's just sick of T1. Gone back to basics as he was getting lazy. No scans or blood tests. Docs weren't happy
As it stands, he's passed is driving test, and we have a policy coming to end next summer, and he can buy a car with the money, if, he can pay the insurance. He's got a part time job that fits in with college, so will have the cash. Only thing stopping him is he CBA with keeping levels below 10. We have 15-25, and I even had to sit on him a few weeks back as he flew into a 'high' rage. I'm similar size, but a bit heavier. He can't currently drive with those levels.
If he isn't checking bloods often enough, he may lose the pump. Hopefully he is doing regular checks though.
I misread the bit about not being able to register, sorry.
Exactly, and it's up for renewal in March.
I don't know this system but it sounds to me that this is the sort of situation to go political. Get onto your GP. Write to the trust copied to your MP, local papers. exert whatever leverage you can because at the end of the day your trusts decision is a political one
@fossy - i work for a large insurers where we get "friends and family" discounts if it does get expensive for him pauljwhitlock at gmail.com
Maybe watching his friends all driving will give him a kick to want to get back driving himself, difficult really, i can remember being 18 (just) and it is a lot to take in without being T1. As i say my daughter is really strong-willed now at 8, let alone 18..
@tjagain - we have written to the Norfolk NHS Trust (who my wife works for too as a Therapeutic Radiographer) and have also signed many a petition and the Juvenile Diabetes Team at the hospital is campaigning themselves to bring change, it just adds insult to injury that not only do we have to buy the sensors, but we can only buy them via third party marked up prices when it is kids health at stake.
It seems like many things in the UK at present, the NHS, roads etc, they do not have the funds to invest in the future (greater control of her T1 now can only mean less problems later?) but can only afford to budget for the few months or years ahead.
Political - the PM has T1 and her government have done sweet F all about making sure our kids can access the kind of care that she receives herself. It makes me want to riot. The Scottish government are well ahead of the UK (England and Wales) one on this, but still need some pushing. Often think I should just move us up there, especially with university looming.
Best way to encourage your gp to prescribe is to start testing LOADS, more than 10-12 times a day and a Libre becomes cheaper than test strips and has the added benefit of giving you a good idea of what your blood is doing, which enables better control, which will only strengthen your case if you can drop your HbA1C too.
That's what I've done, tested hourly, responded accordingly, HbA1c dropped from 107 to 43 in 6 months. Every Diabetic nurse ive seen has said i fulfil criteria for the sensors, only reason i havent asked is because i bought 6 months worth before the shortage kicked in. will update on any decisions...
Thats why get politicians involved and local papers and so on. Pour the pressure on. Are politicians not involved in boards of trusts or something? I can't remember the details of the way the english system works now but I seem to remember politicians being involved at some level. If your MP is a tory he might have influence, if Labour he will love a stick to beat the local / national tories with
Can't suggest anything more than that apart from move to Scotland 😉
Thanks all much appreciated.