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Denied freestyle libre on NHS

Discussion in 'Type 1 Diabetes' started by lish_26, Dec 4, 2017.

  1. lish_26

    lish_26 Type 1 · Newbie

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    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.
     
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  2. paulus1

    paulus1 Type 1 · Well-Known Member

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    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.
     
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  3. Gaz-M

    Gaz-M Type 1 · Well-Known Member

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  4. TheBigNewt

    TheBigNewt Type 1 · Well-Known Member

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    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.
     
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  5. **shell**

    **shell** Type 1 · Well-Known Member

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    @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
     
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  6. lish_26

    lish_26 Type 1 · Newbie

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    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?
     
  7. Fairygodmother

    Fairygodmother Type 1 · Well-Known Member

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    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!
     
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