Denied freestyle libre on NHS

[lish_26]

New to the forum and looking for some support. I've just got off the phone from my diabetes nurse after yet another day of chasing people for a decision on prescribing the freestyle libre.

A bit of background, I am a 27 year old woman and have really been trying hard to manage my diabetes this year. I was diagnosed at 15 and struggled accepting diabetes and everything that comes with it. After the DAFNE course a few months ago I really felt equipped with the knowledge and determination to make some positive changes to my health. My hard work has been paying off and my HBA1C is now 67 - the best its been since I was in school. I put this success down to the DAFNE course, changing my insulin to Tresiba and more recently Fiasp, and using the freestyle libre. I was given a free trial on the DAFNE course and haven't looked back. I have paid for the sensors when I can afford to, but truly feel that when I'm not wearing one I am at a disadvantage. When I heard that they were going to become available on the NHS from November 1st, it felt like Christmas had come early. I had no idea how hard it was going to be to actually get my hands on a prescription.

Over the last few weeks I've been sent back and forth between the GP and hospital until finally today I got some answers. I was told by my GP that the surgery will NOT be prescribing any freestyle libres to patients as it is classed as "Secondary Care". She said that it would be up to the hospital to prescribe this under their guidelines. I then rang and spoke to a nurse at the diabetes centre who subsequently told me the criteria and that I was not eligible. For those interested I live in the North East of England and the criteria was

- testing more than 8 times a day
- HBA1C over 70
- Hypo unawareness
- Multiple hospital admissions with DKA, severe hypo
- Having to get assistance from someone when having a hypo

I pointed out that in June 2017 my HBA1C was over 75, and I believe the only reason it is below 70 now is down to better control using the libre ... I also said I can test more than 8 times a day using DAFNE rules (before meals, waking up, before bed) on days when I am driving. But after a lengthy conversation it was made clear that I wouldn't be getting one on prescription. I am devastated to say the least. I couldn't help but cry when I put down the phone. It seems so cruel and unfair that 6 months ago I would have been eligible but because I am actually trying to improve my health and have been successful in doing so, I won't get this on my prescription. I know that if I stop using the libre and paying for it myself that my blood sugars will start to rise again, but I refuse to compromise my health and wellbeing after trying so hard to improve. Its crazy to me that myself and thousands of others are being denied life changing technology for MONEY. I am grateful for the NHS but I really feel that they need to look at the bigger picture here. Surely giving people the libre for better control is going to cost less in the long run. I guess I felt compelled to post this to vent some of my frustration but also to get some support from others going through exactly the same thing - I know I'm not alone in this situation and really need some help today.

 

[paulus1]

those are not the nice rules. you need to speak to a consultant not the nurse. make out that your testing more because your not sure on your bloods between tests. you could always fib and invents some mysterious hypos. not ethical but they are not allowing this for a non clinical reason.

 

[Gaz-M]

http://ntag.nhs.uk/docs/rec/Freesty...statement Nov 2017 - final.pdf#search="libre"

These are the guidelines for us up here in Sunderland and Newcastle

 

[TheBigNewt]

I have a feeling that in your NHS money plays a large role in paying for devices like the Libre. And the resources sound like they vary from locale to locale. And the demand for Libre probably varies as well. So it's likely that they prioritize it for those whose control of their diabetes is more shaky and leads to short term poor outcomes (DKA, bad hypoglycemia episodes) where the funding might be most applicable. I don't think its that easy to get health insurers to fund CGMs here either, especially for adults who've had it awhile and aren't on pumps. I have 2 friends with sons that have them, one has a new pump the other does MDIs. They are early high school kids.

 

[**shell**]

@lish_26

Morning. I have just read your post and I, a 29 year old also made the decision this year to not let my diabetes control me anymore.

I am currently wearing my Libre trial sensor which my DSN gave me on Friday. While I was at the appointment she told me that Abbot have been rather naughty in advertising that the Libre will be available from November knowing how long it takes CCGs to act on coming up with criteria etc. I think they were hoping for some people power to overwhelm the CCGs, because at the end of the day Abbot will get very rich very quickly once the NHS starts to prescribe them.

My DSN also said what you have been told (I am under the care of South Tyneside) that the hospitals are expecting the GP to pay because it will be on prescription but the GP is expecting the hospitals to pay because of its secondary status. It unfortunately looks as though we are in the middle of a political battle but we are the only ones suffering.

I was told that my request for a Libre could be fought on the basis that I test between 8-12/15 times a day. So I am in the process of gathering my evidence to build my case. Having said that I don't think anything will really happen until late next year.

I truly feel your pain, knowing that something is available to us which could help lighten our burden but is just out of reach is really quite frustrating. I know I'm not looking forward to this sensor reaching the end of its life.

Message me if you would like to rant some more. I feel we are very much in the same boat! X

 

[lish_26]

@lish_26

Morning. I have just read your post and I, a 29 year old also made the decision this year to not let my diabetes control me anymore.

I am currently wearing my Libre trial sensor which my DSN gave me on Friday. While I was at the appointment she told me that Abbot have been rather naughty in advertising that the Libre will be available from November knowing how long it takes CCGs to act on coming up with criteria etc. I think they were hoping for some people power to overwhelm the CCGs, because at the end of the day Abbot will get very rich very quickly once the NHS starts to prescribe them.

My DSN also said what you have been told (I am under the care of South Tyneside) that the hospitals are expecting the GP to pay because it will be on prescription but the GP is expecting the hospitals to pay because of its secondary status. It unfortunately looks as though we are in the middle of a political battle but we are the only ones suffering.

I was told that my request for a Libre could be fought on the basis that I test between 8-12/15 times a day. So I am in the process of gathering my evidence to build my case. Having said that I don't think anything will really happen until late next year.

I truly feel your pain, knowing that something is available to us which could help lighten our burden but is just out of reach is really quite frustrating. I know I'm not looking forward to this sensor reaching the end of its life.

Message me if you would like to rant some more. I feel we are very much in the same boat! X

Thanks so much for getting in touch and sharing your experiences too. I think we are very much in the same boat, I've just tried to private message you but it won't let me for some reason?

 

[Fairygodmother]

The criteria you were given for the North East of England are the NICE criteria, so they're following national guidelines. As TheBigNewt says, the problem is money. Funding.
Much has changed since the NHS was begun; we're living longer and treatments have been developed for everyone that would have been science fiction in 1948, not just for diabetes but across the board and as it's organised now there seems to be insufficient dosh coming in to fund them all.
I'm just not going to start thinking about the political/economic desires of our wonderful politicians!
What really seems to undercut it philosophically for me is that a lot of the decisions seem to be based on treating what's got too bad and not on prophylactic (hope I've spelled that right) methods.
I'd like a Libre too, and a pump. Like lish_26 I'd have met some of the criteria before the Dafne course, chief among them were the frequent hypos, which made working interesting - thank goodness people were sympathetic and asked me if I was ok, needed to eat etc, brought me a biscuit and a cup of tea.
Happy to still be alive, and a very big thank you to those who devised the Dafne course and got it funded!

 

[Arrybo]

Hi all, I’m a newbie here and I have been reading about the decision to support the prescribing of this meter on nhs, after doing some digging for East Cheshire CCM it appears that this is under review and not to be prescribed, I will be taking this up with my DN as I am testing at least 10 time a day and last week I was denied test strips on repeat by my new GP. I really feel that this piece of kit would make a massive difference to me and I am going to take up the fight for East Cheshire, I will keep people posted on my progress

 

[himtoo]

Thanks so much for getting in touch and sharing your experiences too. I think we are very much in the same boat, I've just tried to private message you but it won't let me for some reason?

Hi there @lish_26

2 things

I really feel for you - it is not a nice feeling knowing there is something that can have such an impact on your care routine , yet to be denied it . sending hugs [[[hugs]]]

and the second -- in order to take part in private messaging you need to build up to a level of 10-12 posts on the open forum first.
this is to prevent spammers taking advantage , so just a few more posts to go.

all the best !!
himtoo

 

[Scott-C]

@Arrybo , @lish_26 , @**shell** , there's a few chemists in my part of the world who have decided to sell at the NHS cost price of £35 plus an ordering fee of £10. That's per order, not per sensor, so if you're buying several at a time, it brings the price down quite a bit. Obviously not as good as free, but I'd rather pay £37.50 each for 4 than £48 till the NHS gets its act together.

So, might be worth asking around a few independent chemists and see if you can get any on board. Show them this link which is set up for business purchases.

www.freestylelibrepharmacyportal.co.uk

 

[Scott-C]

Also, forgot to say, there's a page at link below which suggests that there's a tax break - employer buys it but deducts cost from tax payments, so net cost is nil - pay for libre/dexcom but pay correspondingly less tax. I asked my employers to have a look but as we're a public service body which doesn't generate taxable profits, there was no scope for it. But maybe worth a chat with HR to see how that pans out. Would be interesting to know if this works.


http://www.inputdiabetes.org.uk/cgm/tax-break/

 

[Arrybo]

Also, forgot to say, there's a page at link below which suggests that there's a tax break - employer buys it but deducts cost from tax payments, so net cost is nil - pay for libre/dexcom but pay correspondingly less tax. I asked my employers to have a look but as we're a public service body which doesn't generate taxable profits, there was no scope for it. But maybe worth a chat with HR to see how that pans out. Would be interesting to know if this works.




thanks for the info, I shall look into this, the chat with HR would be a chat with myself as I am the HR manager lol, but on a serious note I haven’t even started with cheshire East’s CCG, I will keep everyone posted as I am adamant that I want this meter

 

[Sweetheart66]

Also, forgot to say, there's a page at link below which suggests that there's a tax break - employer buys it but deducts cost from tax payments, so net cost is nil - pay for libre/dexcom but pay correspondingly less tax. I asked my employers to have a look but as we're a public service body which doesn't generate taxable profits, there was no scope for it. But maybe worth a chat with HR to see how that pans out. Would be interesting to know if this works.


http://www.inputdiabetes.org.uk/cgm/tax-break/

I work for an NHS trust so not likely to work for me!

 

[Scott-C]

I work for an NHS trust so not likely to work for me!

Our HR department is always firing stuff at us about the Equality Act, but seemed totally disinterested when I asked them about the tax break. They like the virtue signalling theory, but not the details of the practice. There's an HMRC office just round the corner from us, so I might pay a visit there soon to run it past them. Reading it over again, I thought that the tax might just be deductible from profits, but who knows, maybe it's deductible from my income tax? Tax law has always been a bit of a mystery to me!

 

[vic hill]

LISH 26
sorry to hear your plight .
we in suffolk have heard via a good source
that the Libre will only be GIVEN TO pregnant mums ...
i guess funds are not ave , as we are all told NHS HAS NO MONEY then how come they offer a delivery service on prescription s . and why not tell joe public how much the prescription cost ..
maybe just maybe we would just begin to understand not to waste any meds
i only found what a vial of insulin cost s my type £ !2-00 9 months back
regards vic

 

[misst1mammy]

Can I ask where abouts in the north east do u live xxx

 

[kev-w]

The vale of York CCG have made their decision at a meeting, and are having another meeting in January to announce their decision, or so the lady dealing with my complaint says, so I've contacted my local MP, who funnily enough has spoken to the CCG about this already.

Rhymes with bankers..... 3

 

[novorapidboi26]

Those criteria seem reasonable to me......

Although I am confident as time goes on more flexibility will arise.....

As you have only recently done DAFNE its probably very likely that the decreased HbA1c is as a result of you new knowledge and understanding of dose adjustment.......as opposed to the libres ability to allow you to get out in front of any lows or highs that it predicts...

I wouldn't give up hope just yet though.......try and focus on managing with the DAFNE principles as these make it just as easy to gain control but with only the nuisance of finger pricks.....and of course when you can afford it, get a sensor to help with a series of basal tests.....

 

[lish_26]

Can I ask where abouts in the north east do u live xxx

County Durham

 

[misst1mammy]

See I live in South Shields but with Sunderland hospital and I'm getting frustrated about the whole situation xx