Libre NHS criteria

Fatima_94 · Mar 3, 2018

My doctor at central middlesex hospital wanted to give me the Libre as my sugars are sometimes erratic and I go low very often. She was shocked when she checked the criteria for our region.. she said it would exclude most diabetics and that she could only think of 5 people who would be eligible. You would have had been treated multiple times in a&e for severe hypos and would have to have a hba1c average of 69 and above.. there was more but i've forgotten.

We both thought it was ridiculous. It's completely unfair to give us hope by making it available on the NHS and then taking that hope away by creating such strict and impossible criteria.

My father (who's type 2 diabetic) was told by his doctor at another hospital that if he was type 1 he would have given him the Libre. This leads me to think, if I requested to move to his hospital, would I have the option of the Libre? I'm very confused by this system.

My doctor told me we should all complain to those responsible about this issue as it is totally unfair. It would be useful for us to collectively lobby against this.

dbr10 · Mar 3, 2018

Fatima_94 said:
My doctor at central middlesex hospital wanted to give me the Libre as my sugars are sometimes erratic and I go low very often. She was shocked when she checked the criteria for our region.. she said it would exclude most diabetics and that she could only think of 5 people who would be eligible. You would have had been treated multiple times in a&e for severe hypos and would have to have a hba1c average of 69 and above.. there was more but i've forgotten.

We both thought it was ridiculous. It's completely unfair to give us hope by making it available on the NHS and then taking that hope away by creating such strict and impossible criteria.

My father (who's type 2 diabetic) was told by his doctor at another hospital that if he was type 1 he would have given him the Libre. This leads me to think, if I requested to move to his hospital, would I have the option of the Libre? I'm very confused by this system.

My doctor told me we should all complain to those responsible about this issue as it is totally unfair. It would be useful for us to collectively lobby against this.

Clearly, the criteria are deliberately set to exclude most people who would benefit.

urbanracer · Mar 3, 2018

Fatima_94 said:
My doctor at central middlesex hospital wanted to give me the Libre as my sugars are sometimes erratic and I go low very often. She was shocked when she checked the criteria for our region.. she said it would exclude most diabetics and that she could only think of 5 people who would be eligible. You would have had been treated multiple times in a&e for severe hypos and would have to have a hba1c average of 69 and above.. there was more but i've forgotten.

We both thought it was ridiculous. It's completely unfair to give us hope by making it available on the NHS and then taking that hope away by creating such strict and impossible criteria.

My father (who's type 2 diabetic) was told by his doctor at another hospital that if he was type 1 he would have given him the Libre. This leads me to think, if I requested to move to his hospital, would I have the option of the Libre? I'm very confused by this system.

My doctor told me we should all complain to those responsible about this issue as it is totally unfair. It would be useful for us to collectively lobby against this.

In principle I'd agree and the NHS needs to take a longer term view and accept that giving us the ability to maintain better control of our BG levels may actually reduce long term costs of diabetes care.

The practicalities are somewhat different though. Abbot cannot keep up with the current demand (I am back to finger pricking whilst I wait for my 3 week old order to arrive) and I feel that there's no point in opening up the market right now anyway.

We can only hope that the new financial year allows CCG's to plan for CGM in annual budgets and that Abbott Labs finds a way to drastically increase the production quantities of sensors (without sacrificing quality, which isn't great now) but I'm not holding my breath for either.

So unfortunately I would have to conclude that some sort of prioritisation is inevitable in the short to medium term. Would be quite good though if it were standardised in some way so that availability does not come down to the usual postcode lottery shambles that we seem to be experiencing.

kev-w · Mar 3, 2018

It really does surprise me the lack of fuss & fight there is around the Libre roll out, remember it's a National health service so if your own CCG isn't following the RMOC guidelines you should complain.

The more T1s who make a fuss, make a noise about this the better.

daemoncor · Mar 3, 2018

urbanracer said:
In principle I'd agree and the NHS needs to take a longer term view and accept that giving us the ability to maintain better control of our BG levels may actually reduce long term costs of diabetes care.

The practicalities are somewhat different though. Abbot cannot keep up with the current demand (I am back to finger pricking whilst I wait for my 3 week old order to arrive) and I must conclude that there's no point in opening up the market right now anyway.

We can only hope that the new financial year allows CCG's to plan for CGM in annual budgets and that Abbott Labs finds a way to drastically increase the production quantities of sensors (without sacrificing quality, which isn't great now) but I'm not holding my breath for either.

So unfortunately I would have to conclude that some sort of prioritisation is inevitable in the short to medium term. Would be quite good though if it were standardised in some way so that availability does not come down to the usual postcode lottery shambles that we seem to be experiencing.

Sorry, I'm not too experienced with this stuff, however I found a girl on instagram who is also waiting 3 weeks for her Abbott order. She said she pays £50 for the order though, but has found that they sell the sensors in Asda, for £44, and it only takes 3 days to get them in stock.
Hopefully this helps you out a little, might be worth checking in your local Asda!

urbanracer · Mar 3, 2018

daemoncor said:
Sorry, I'm not too experienced with this stuff, however I found a girl on instagram who is also waiting 3 weeks for her Abbott order. She said she pays £50 for the order though, but has found that they sell the sensors in Asda, for £44, and it only takes 3 days to get them in stock.
Hopefully this helps you out a little, might be worth checking in your local Asda!

Ok thanks, I would have been driving past our nearest one later today, so I'll stop in and ask. I'll let you know how it turns out.

Dark Horse · Mar 3, 2018

There is a campaign by the charity Diabetes UK with information about who to complain to and what to say:- https://www.diabetes.org.uk/resources-s3/2018-01/1303-Flash_Advocacy_pack-DL-digital.pdf

Dark Horse · Mar 3, 2018

Fatima_94 said:
My doctor at central middlesex hospital wanted to give me the Libre as my sugars are sometimes erratic and I go low very often. She was shocked when she checked the criteria for our region.. she said it would exclude most diabetics and that she could only think of 5 people who would be eligible. You would have had been treated multiple times in a&e for severe hypos and would have to have a hba1c average of 69 and above.. there was more but i've forgotten.

We both thought it was ridiculous. It's completely unfair to give us hope by making it available on the NHS and then taking that hope away by creating such strict and impossible criteria.

My father (who's type 2 diabetic) was told by his doctor at another hospital that if he was type 1 he would have given him the Libre. This leads me to think, if I requested to move to his hospital, would I have the option of the Libre? I'm very confused by this system.

My doctor told me we should all complain to those responsible about this issue as it is totally unfair. It would be useful for us to collectively lobby against this.

Funding generally depends on the policy of the CCG that your GP is in. Presumably if you live on the border of 2 CCGs, one of which funds Libres, you could gain funding by changing GP.

Information about funding in NW London:-
http://www.inputdiabetes.org.uk/2016/11/cgm-commissioned-8-north-west-london-ccgs/

Hotpot74 · Mar 3, 2018

urbanracer said:
In principle I'd agree and the NHS needs to take a longer term view and accept that giving us the ability to maintain better control of our BG levels may actually reduce long term costs of diabetes care.

The practicalities are somewhat different though. Abbot cannot keep up with the current demand (I am back to finger pricking whilst I wait for my 3 week old order to arrive) and I feel that there's no point in opening up the market right now anyway.

We can only hope that the new financial year allows CCG's to plan for CGM in annual budgets and that Abbott Labs finds a way to drastically increase the production quantities of sensors (without sacrificing quality, which isn't great now) but I'm not holding my breath for either.

So unfortunately I would have to conclude that some sort of prioritisation is inevitable in the short to medium term. Would be quite good though if it were standardised in some way so that availability does not come down to the usual postcode lottery shambles that we seem to be experiencing.

Hotpot74 · Mar 3, 2018

Ordered 3 Libre sensors from Asda on Wednesday and picked them up Thursday ... They only cost £44 too and I've already been questioning Libre about why/how this is happening ... As of yet they haven't replied (plus Asda said there is no cap on his many I can order!) Why not contact your local Asda, I was the first person ever apparently in my area to do so, and cancel your Abbot order.... Save money too

urbanracer · Mar 3, 2018

Hotpot74 said:
Ordered 3 Libre sensors from Asda on Wednesday and picked them up Thursday ... They only cost £44 too and I've already been questioning Libre about why/how this is happening ... As of yet they haven't replied (plus Asda said there is no cap on his many I can order!) Why not contact your local Asda, I was the first person ever apparently in my area to do so, and cancel your Abbot order.... Save money too

My local Asda pharmacist has just told me that because our CCG is not funding the sensors yet, the in store pharmacy has not set up an account with Abbott. She said she felt sure it would happen fairly soon. All suitably vague.

Geri S · Mar 6, 2018

I am not one to write on these forums however on this one I will. The criteria is mad. I am a HNF1Alpha diabetic so technically not a T. However this machine would/has completely changed my control. I am in the process of trying to convince my CCG to make an exception in my case. My consultant is not optimistic about my chances!!!

Josiemm · Mar 6, 2018

Never heard of it being in Asda so I'll have to check it out!
The requirements are indeed crazy, but I would honestly advise buying your own if you are concerned and would want one. I've had mine for about 2 years now and it is definitely worth it- sorted out night time hypos and general control, it's also amazing for adjusting basal rates and carb ratios.
Yes its expensive but to be honest, it isn't a necessity for us Diabetics- I can understand why the criteria is so strict for them, especially with the strain the NHS is currently under. As an 18 year old it's made life much easier, especially at stressful times but it is not something you need all the time- at first you might wear one straight after the other but once your sorted, just have a backup sensor in your cupboard because you really don't need them frequently. Again, well worth the investment though, it isn't something you regret and I personally found it much better, more accurate and less annoying than CGM (to be honest though, when I tried that it fell off after 3 days, not too sure why lol)

Josiemm · Mar 6, 2018

Josiemm said:
Never heard of it being in Asda so I'll have to check it out!
The requirements are indeed crazy, but I would honestly advise buying your own if you are concerned and would want one. I've had mine for about 2 years now and it is definitely worth it- sorted out night time hypos and general control, it's also amazing for adjusting basal rates and carb ratios.
Yes its expensive but to be honest, it isn't a necessity for us Diabetics- I can understand why the criteria is so strict for them, especially with the strain the NHS is currently under. As an 18 year old it's made life much easier, especially at stressful times but it is not something you need all the time- at first you might wear one straight after the other but once your sorted, just have a backup sensor in your cupboard because you really don't need them frequently. Again, well worth the investment though, it isn't something you regret and I personally found it much better, more accurate and less annoying than CGM (to be honest though, when I tried that it fell off after 3 days, not too sure why lol)

*you're sorted goodness me

CDM9 · Mar 6, 2018

Sorry to hear that however I’ve got one on the NHS in Leeds and have not had any hospital admissions and my hba1c is 56.... I test more than 8 times a day and have erratic readings which has led to background retinopathy progressing to diabetic maculopathy detection so I’m going for further eye examinations. I was approved a libre trial just started today. Just waiting for my sensor to activate..! So clearly ‘criteria’ for a libre varies across the country which is totally unfair.

kzlorenz · Mar 6, 2018

Fatima_94 said:
My doctor at central middlesex hospital wanted to give me the Libre as my sugars are sometimes erratic and I go low very often. She was shocked when she checked the criteria for our region.. she said it would exclude most diabetics and that she could only think of 5 people who would be eligible. You would have had been treated multiple times in a&e for severe hypos and would have to have a hba1c average of 69 and above.. there was more but i've forgotten.

We both thought it was ridiculous. It's completely unfair to give us hope by making it available on the NHS and then taking that hope away by creating such strict and impossible criteria.

My father (who's type 2 diabetic) was told by his doctor at another hospital that if he was type 1 he would have given him the Libre. This leads me to think, if I requested to move to his hospital, would I have the option of the Libre? I'm very confused by this system.

My doctor told me we should all complain to those responsible about this issue as it is totally unfair. It would be useful for us to collectively lobby against this.

One point to consider is that 1 box of 50 test strips like Aviva costs 33£... plus lancets to finger prick.

becca59 · Mar 6, 2018

CDM9 said:
Sorry to hear that however I’ve got one on the NHS in Leeds and have not had any hospital admissions and my hba1c is 56.... I test more than 8 times a day and have erratic readings which has led to background retinopathy progressing to diabetic maculopathy detection so I’m going for further eye examinations. I was approved a libre trial just started today. Just waiting for my sensor to activate..! So clearly ‘criteria’ for a libre varies across the country which is totally unfair.

You are one of the few people to get one in Leeds as you obviously have extra issues (which I believe is morally right) Told only 30 out of 3000 at my last appointment. Not on the cards for the vast majority of us in Leeds.

jbabies · Mar 6, 2018

Im a big Libre fan but it's so unfortunate it appears to be becoming a postcode lottery. I've been using the sensors on and off for some time now and recently began to see dangerously low results during the night. Without the sensors it would have taken alot longer to address and know where to make the adjustments on my pump.
I've also had to return one out of three sensors in the last two orders recently. Not had any problems before. Really hope they get it sorted soon.

Gloucestergirl · Mar 6, 2018

I have only used one sensor that was given to me as a birthday present by my son. It was really good and showed me what my results were when I wouldn't normally have known them. Unfortunately the sensor fell off after ten days so I ordered some more on 9th February and received an email to say that they are ON HOLD at the moment so if I can get them sooner from a pharmacy I will be very pleased. I am very hopeful that the sensors may be available from my local Boots or Asda or any other pharmacy so did some research. I found an interesting document by Abbot to pharmacies about {The Freestyle Libre System Pharmacy/Wholesaler Reimbursement FAQs" regarding the sensors. One item was very interesting and a bit disconcerting if I've read it right. It said:
2. Is Abbott looking to work with UPS and supply patients directly with the FreeStyle Libre sensors?
- No, we are pursuing a Direct to Pharmacy distribution model for this product.

This looks to me that they will only be available through pharmacies so anyone ordering directly from Abbot will have a long wait. As I have been told that our NHS isn't prescribing them I will certainly try and get them from a pharmacy if I can.

CDM9 · Mar 6, 2018

becca59 said:
You are one of the few people to get one in Leeds as you obviously have extra issues (which I believe is morally right) Told only 30 out of 3000 at my last appointment. Not on the cards for the vast majority of us in Leeds.

Interesting, I asked for it during my appointment, the consultant didn’t recommend it or know as much as me it would appear... Just went in with my reasons etc and it was agreed the next day. Maybe it was a combination of luck too as my appointment was January and the trial was just starting.

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