Freestyle Libre cost/funding?

As of April 1st there is supposed to have been an end to the lottery of funding via your CCG.
Here is a link that may help you identify if you meet the funding criteria. If you are treated by a hospital specialist then they will know which hoops to jump through. Best of luck.
Alternatively ration yourself to 1 per month so at least you are getting some benefit from checking your levels for basal levels maybe?
https://www.diabetes.org.uk/guide-t...our-diabetes/testing/flash-glucose-monitoring

EllieM said:

This also has the advantage that you're less likely to become allergic to the sensors and be forced to stop using them permanently?
(Just trying to find a bright side, I hope you get your NHS funding.)

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After reading the above comment regarding Tescos I contacted my local large branch and asked about buying the sensors from them. Imagine my surprise when the pharmacist told me she had never had to issue any. She said she could possibly order me some but could not give me a price until they were in stock !

mitty6678 said:

I found Tesco to be the most afordable at £35 per sensor but even that is no longer affordable for me. I'm wearing what could be my last ever sensor, does anyone know of any help or funding for people with very little income? Or any news on availability via east Anglia NHS?

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Which part of East Anglia? If it is Ipswich and East Suffolk then they are following the NHS England guidance but initial prescribing can only be done by the Hospital specialist team, not by your GP or Diabetes nurse. If you meet the criteria and want to be prescribed Libre then you will need a referral from your GP to the specialist hospital diabetes team.

Wow 35? It was 50 from Superdrug where I live. Too much

MDJ said:

Which part of East Anglia? If it is Ipswich and East Suffolk then they are following the NHS England guidance but initial prescribing can only be done by the Hospital specialist team, not by your GP or Diabetes nurse. If you meet the criteria and want to be prescribed Libre then you will need a referral from your GP to the specialist hospital diabetes team.

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If it is any of the other CCG's in East Anglia (namelyGreat Yarmouth and Waveney, North Norfolk, South Norfolk,Norwich and West Norfolk CCGs) they have only said that they will implement the NHS England guidance sometime in April but nothing appears to have happened yet. They have also not published any details yet as to what the initial prescribing process will be - namely will it initially be through diabetes specialist unit only or will it initially be via GP's.

Overall, it looks like it is going to happen based on the NHS England guidance but not quite yet.

NicoleC1971 said:

As of April 1st there is supposed to have been an end to the lottery of funding via your CCG.
Here is a link that may help you identify if you meet the funding criteria. If you are treated by a hospital specialist then they will know which hoops to jump through. Best of luck.
Alternatively ration yourself to 1 per month so at least you are getting some benefit from checking your levels for basal levels maybe?

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Unfortunately, the post code lottery is still very much in force with most CCG's. Many CCG's (including mine which is East & North Herts) have not yet updated their guidance to reflect the new NHS England criteria for the prescribing of Libre. As of the end of April my CCG are still utilising the guidance they created at the beginning of 2018 which is very strict and only allows Libre for a very limited range or T1's. In an email to me when I complained that they were not following the NHS England guidance they wrote back to me and told me that they will look to "possibly" update their guidance for prescribing Libre until sometime towards the end of Q1 2018/19 and even then that I must "remember that the NHS England guidance is not a requirement or mandatory that that they will look to prescribe the Libre only under circumstances where the CCG determines that the clinical benefits outweigh the cost of provision".

I also know of some CCG's (such as mid -Essex CCG) who have updated their guidance but are still not supporting the the NHS England guidance in full. Specifically, while the NHS England guidance says that Libre should be prescribed to T1's who test greater than 8 time per day as one of the criteria, mid-Essex CCG have rewritten that particular criteria element to say that Libre should be prescribed to T1's who test over 9.5 time per day AND have an HbA1c greater than 8.5. This is not an element that is included in the NHS England guidance.

There are people working to deal with these problems with CCG and their implementation of the NHS England guidance (in particular Partha Kar of NHS England) but we still have a fight on our hands before some VVG's are going to play ball and follow the NHS England guidance.

The fight is not over yet in some part of the country.

I think the CCGs were not ready for the uplifting of postcode lottery. it'll be different if NHS ploop a lump of funding and say hey we are saying good bye to postcode lottery, please prescribe some libres based on guidelines. I mean if anyone has any issues, INPUT is the right way to go about it to convey our concerns?

I also like to add that libres are becoming more and more difficult to buy, i've been almost 2 weeks without one.

I had a ring around today.
Sainsbury’s and Everett were £63
One local £57
Another local £52.50 (after they added their cut she told me)
Asda £44
Superdrug £42

Only Superdrug and Asda mentioned vat. ASda wanted to see an exemption card. I don’t have one as I’m diet only but as I understand it the only required qualification is your declaration it’s for you and that you have diabetes. No type or treatment regime required. (Probably a reflection that the government have always believed it to be impossible to treat it effectively by diet!) Superdrug wanted me to bring in my own exemption form, available on the .gov website.

It seems not even big chains have consistent pricing. I’ll try Tesco tomorrow

EllieM said:

Wow, do they have even one person on their books who fulfills both those criteria?

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I think that is the point - some CCG's don't want to prescribe as they see it as an expensive solution so they set extreme criteria that very few people will meet. This is despite the analysis done by NHS England that shows that for people testing more than 8 time per day that the Freestyle Libre is cost neutral at worst - particularly since the change on DVLA guidance on using Libre for testing before driving.

Marcus

The ironic thing is those CCGs who are 'restrictive' with the new prescribing criteria are in effect costing themselves more money - they've had the equivalent cost of supplying Libre's to 20% of the their T1 patients top sliced off their budgets, so they've already paid for them, and now they have the ongoing cost of paying to supply lots of test strips to those patients who if they had the Libre wouldn't be using as many strips. Any CCG saying it's restrictive for financial reasons is deluded.

slip said:

The ironic thing is those CCGs who are 'restrictive' with the new prescribing criteria are in effect costing themselves more money - they've had the equivalent cost of supplying Libre's to 20% of the their T1 patients top sliced off their budgets, so they've already paid for them, and now they have the ongoing cost of paying to supply lots of test strips to those patients who if they had the Libre wouldn't be using as many strips. Any CCG saying it's restrictive for financial reasons is deluded.

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Exactly! And yet, as in the case of mid-Essex CCG, we are seeing revised criteria that won't come anywhere close to reaching 20% of their T1's. I suppose the charitable interpretation is that these CCG's have so little knowledge of the relatives states of their T1 populations that they are starting with more restrictive criteria, will see what the take up is in the overall population of T1's and then will perhaps relax the criteria closer to the NHS England guidance at a later date. But, for those of us who already meet the NHS England guidance on criteria, but live in these CCG's, it means that there is an even longer date. And, given that many CCG's are simply adopting the NHS England criteria as published, it means that currently, despite claims to the contrary, that the postcode lottery with respect to Freestyle Libre is not gone yet. There's still lots to do.

OMG, i can't believe it, looks like i have been funded! My consultant just replied to my email from this morning:

It’s all in hand - we did not know how long it would take to process the applications . You have been funded. A letter will come out to you in due course.

Yes, hopefully the letter arrives soon!

Hi, I am on a two week trial with the Libre and I love it. I have to give it back to the hospital in one weeks time, with a two day food diary and a chat with the DSN. At the end of June, 27th, I am at ther hospital again and I hope I am going to get the Libre on the NHS, like you (even though I find it invaluable) I just cannot afford to buy it myself. I really had to fight to get it.
Good luck