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Petition for Freestyle Libre on NHS

Discussion in 'Type 1 Diabetes' started by Jane!, Apr 22, 2016.

  1. richyb

    richyb Type 1 · Well-Known Member

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    perhaps either blood strips or Libre should be offered but not both. For the occasional blood tests needed Diabetics should buy there own if they had a Libre.
    The NHS might be short of money but when has it not been short of money. Also when has the uk not been virtually bankrupt. I can remember the IMF refusing to loan us more money. Yet we still continue. So do Iceland and Ireland and Greece and even the USA. So come on the NHS should say sod it and spend, If they don't some others will grab the money.
     
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  2. donnellysdogs

    donnellysdogs Type 1 · Master

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    According to a nurse that I was speaking to today there may be a small possibility of the new freestyle that comes out in Nov getting funding... Lets hope so...
     
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  3. tizzy

    tizzy · Well-Known Member

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    Hi I self fund the libre but only can for a short time I would love to get it on The nhs I'm fed up of being made to feel I cost the Nhs loads of money even the pharmacist has to point out the cost of needles and insulin maybe I just got unlucky with my chemist .the libre has been a real help to me and for parents of diabetic kids it must be invaluable why shouldn't they get it on the nhs why invent technology if we can't use it to improve our lives maybe to some this seems selfish but I save this country probably like thousands of others loads of money looking after vulnerable family members young and old by being an unpaid carer they need me to stay as healthy as I can I don't want to go back to see if ants drink my pee to test for sugar the dvla won't accept this before driving tizzy
     
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  4. donnellysdogs

    donnellysdogs Type 1 · Master

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    It will of course be down to individual CCGs as well (back to postcode lottery).
    Ie a CCG just 40 'iles away from me wil pay for fully funded real time CGMs. My peterborough CCG will not fund longterm and the patient has to. Even provide evidence for get one on a short term basis and they are getting refused....
     
  5. donnellysdogs

    donnellysdogs Type 1 · Master

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    If needing any medication or anything via any CCG iits best to look at your CCGs policies (all available via Dr Google).

    Of course we look at diabetes as an immediate concern.. I have also had to look at stomach care and breast cancer and had to weigh up my options...

    We moved last year CCG and our home based on my hubby being able to get home to help me from work in a quick time. He didn't want to change job.. And why should he?) and also my difficulty with stairs and needing a bungalow again...there are many factors to think about.

    Things a CCG may be good with is cancer care or stomach or heart etc... Its about also weighing up all angles of longterm health..
     
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  6. Hazza1989

    Hazza1989 Type 1 · Member

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    Some of these comments are really interesting and i must side with the people who have said how life changing the libre is. The biggest thing that i find is so helpful is the fact is so easy to check your blood sugar, the amount of times my partner has had to deal with me having a hypo and being in no state to have someone prick my finger, the libre completely wipes this out!

    My testing has increased since having it as well, i used to test probably 6 times a day max when using a finger pricker, now i'm testing easily 15-20 time plus and feeling in total control of what i am doing. For anyone who hasn't used a libre yet because of the cost i honestly recommend trying it for a month and seeing how much it helps you!

    I haven't looked back since Christmas :)
     
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  7. alexask

    alexask Type 1 · Member

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    I have signed. I think the benefits outweigh the costs. And the increased cost is offset by the reduction of test strips. I have even bought one for a type 1 girl at work (as she can't afford it and I came into a bit of money recently).
     
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  8. Tylers73

    Tylers73 Type 1 · Well-Known Member

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    What a lovely thing to do. My dad may be buying me the unit but it's the extra stuff to go with it!


    Sent from my iPhone using DCUK Forum mobile app
     
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  9. Brit90

    Brit90 Type 1 · Well-Known Member

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    What amazes me is that people on here are dead set against the NHS providing this. We should spend more money on cancer/doctors etc.
    This is not a political forum, we are here to get help. If we want to talk money and statistics, look at the cost of what happens to your life from Diabetes complications.
    For a small investment by the government for everyone who has Type 1 diabetes - this would save the government millions of pounds in the future. It is an investment that will turn a huge change around in the way a Diabetic lives. It will prevent the hospital treatments from accidental low blood sugars, it will help control your blood sugars a lot more than a finger prick several times a day. It will help prevent amputations because it is a 24/7 monitoring system and it's the cheapest one out there.

    The forum has over 1m users - but only 33k of them have signed the petition. That says 3 things - 1 - 97% of the users on the forum are against free care for some ridiculous reason, 2) 97% of the people don't exist and they are fake accounts, 3) 97% of the users haven't seen this post.

    Personally the Libre is fantastic - unlimited blood sugar scanning, no blood, no pain, constant monitoring and so you can balance your insulin easier. You can see where your blood sugars have been and where they are going to. You can see how your body is working with the sugar at any given moment, from sleeping, walking, running, exercising. You can work out how your body is processing all the extra sugars.
     
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  10. Brunneria

    Brunneria Other · Guru
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    I also think the Libre is fantastic, and would like to see every diabetic (whatever their type) have the use of one. I also think that it would save the NHS money in the long run. But I am afraid that your arguments seem very selective and generalised, and fail to grasp that the NHS is constantly trying to spread too little money, too thinly.

    Firstly, you seem to consider NHS treatment and equipment supply as 'free'. It isn't. There is no free treatment on the NHS.
    - it is free at point of use, but I, and all the other millions who pay our National Insurance contributions pay for it out of our pay packets.

    Secondly, diabetics (from your post I think you are only talking about T1s?) already get glucometers, test strips, NHS checks, and some get CGMs and pumps. If these are used effectively, they will prevent many of the hypos, hypers and amputations that you seem to blame on them not currently having Libres.

    Thirdly, the Libre is specifically intended to not replace glucometers for insulin dosing, driving and low readings. The instructions clearly state switching to a glucometer in those circumstances. So any T1 who uses it to calculate insulin doses, or check for lows when driving, is doing so against the manufacturers instructions. Consequently, the NHS will never approve the current Libre for such use. Abbott would have to change their product and test it rigorously plus changing their instructions for use, before the NHS would even begin testing it for such purposes.

    Fourthly, just because vast numbers of users have signed up to the forum over the last few years does not mean that they log in daily and saw this thread, or followed the link to the petition (which - so far as I am aware - is not officially supported by diabetes.co.uk). This does not mean they don't care. It does not mean they should be told their reasoning is ridiculous, or that they should be criticised for 'politicising', or that they have created false accounts.

    I repeat, I would love to see the Libre available to every diabetic who wants one, but arguments like the ones you have used can only complicate and confuse an issue that basically comes down to budgeting and device accuracy.
     
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  11. tim2000s

    tim2000s Type 1 · Expert
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    All marvellous, however your argument misses a critical point. A petition to get the Libre on the NHS doesn't change the process by which NICE makes device recommendations and won't fast track it.

    The CGM petition that was posted on the Government website had the following response when it was closed by the Government:

    "The National Institute for Health and Care Excellence (NICE) is the independent body that provides guidance on the prevention and treatment of ill health and the promotion of good health and social care. NICE’s guidance is based on a thorough assessment of the available evidence and is developed through wide consultation with stakeholders.

    It is for NHS commissioners to decide whether to make continuous glucose monitoring devices available to their local populations."

    The key in that statement is "NICE’s guidance is based on a thorough assessment of the available evidence and is developed through wide consultation with stakeholders". Stakeholders are not just the patients, but the supplier and everyone in the chain of supply, education, payment, etc.

    If NICE is pushed into assessing something before there is evidence that provides a very clear and demonstrable case then you can say goodbye to getting anything of use on the NHS. Let Abbott build the evidence case and submit the case when they feel ready. In the long run that will make it far more likely that we get appropriate technology on the NHS instead of punted into the long grass.

    You also make a massive assumption in your statement. You state that:

    "It is an investment that will turn a huge change around in the way a Diabetic lives. It will prevent the hospital treatments from accidental low blood sugars, it will help control your blood sugars a lot more than a finger prick several times a day. It will help prevent amputations because it is a 24/7 monitoring system and it's the cheapest one out there."

    Well, yes, if the diabetic in question uses it. And that's fundamentally the point. The device isn't expensive, but I've stood in front of room fulls of non-online T1Ds. I've showed off the Libre and CGM. In everyone 12 people, 2 or 3 showed an interest. The vast majority didn't. There's a plethora of people that need help with understanding how to live with their condition and why this stuff is useful, before we even get to supplying it to them.

    I'd love it to be available on request, and I think it will get there, but signing petitions really doesn't help us with that or move it forward in any way. Better to liaise with Abbott to help provide evidence and to work with your local CCG to make it clear there is demand than fill in 38degrees petitions.

    In response to your comments on the Forum:

    "The forum has over 1m users - but only 33k of them have signed the petition. That says 3 things - 1 - 97% of the users on the forum are against free care for some ridiculous reason, 2) 97% of the people don't exist and they are fake accounts, 3) 97% of the users haven't seen this post."

    1mn users - yes, but global users not UK users, of which the vast majority are T2D (if you base it on population split, that would be 100k T1Ds v 900k T2Ds. The numbers aren't quite that, but you get my drift). T2s don't necessarily hold the same view on testing technology that T1s do. How many sign random internet petitions that require you to give up personal details is another question. It's not really a surprise, given my above comments, that the petition hasn't garnered tons of support.
     
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    #51 tim2000s, Jul 12, 2016 at 11:38 AM
    Last edited by a moderator: Jul 12, 2016
  12. Hattonma

    Hattonma Type 1 · Well-Known Member

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    As a libre user for a couple of months now I can honestly say that it is beginning to change my life.

    This has not happened by just buying the machine it has taken alot of understanding about why things are happening. Only now am I starting to change this and adjust.

    I haven't signed the petition because if I am honest I don't think it will do any good. As @tim2000s says the assumptions around advantages that it brings depend on alot of factors. The biggest being motivation to use it and change your approach using all the information.

    I would like to see trials being run and it made available for people who can prove they have the dedication to make it improve their lives. Giving it to people who have been using it and have been improving their sugars as a result.
     
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  13. tim2000s

    tim2000s Type 1 · Expert
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    There is a trial underway that you can find on the clinical trials gateway that is looking to identify the benefits and confirm a number of factors.

    In my view, where it really needs trialling is those who don't finger prick to see if behaviour can be changed.


    Sent from my iPhone using Tapatalk
     
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  14. jinty73

    jinty73 Type 1 · Active Member

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    Hi Hattonma, i've just started using the libre, just about to finish with my first sensor. I'm a bit unsure about it just now as i don't think i'm understand it yet. In the first few days i found myself getting very frustrated with it as i was checking my bloods too often so the peaks after eating were prompting me to take insulin when in fact the insulin i had already taken hadn't done its job yet!!!!! I'm seeing a lot of peaks and falls and this has been worrying me a bit but i think i need to be more selective when i'm checking my bloods.....or am i doing it all wrong, i've no idea!!!!!!!
     
  15. noblehead

    noblehead Type 1 · Guru
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  16. jinty73

    jinty73 Type 1 · Active Member

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  17. jinty73

    jinty73 Type 1 · Active Member

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    Wow!!!!!! I can't believe what the first page has told me already. I have been diabetic for 26 years and i suppose its fair to say that i try my best to not let it take centre stage in my life so my knowledge of diabetes has pretty much been that of someone who isn't diabetic. I have NEVER taken my insulin before a meal as i have always followed the rules i was given when i first became diabetic, how completely stupid have i been and no wonder i have so many peaks!!!!!
    Thank you, thank you, thank you for this link;)
     
  18. Hattonma

    Hattonma Type 1 · Well-Known Member

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    Hi @jinty73. Don't worry I would say your not alone in this thought process. I was exactly the same and having the same results as u. What I would say is don't beat yourself up for testing all the time though that's what it is for.

    When I first got it i presumed it was instantly going to change my control and result in my sugars being lowered as I could constantly react. I couldn't have been much further from the truth.

    What the libre does is gives u a picture of what your sugars are doing. It gives u a clear picture of what foods have what impacts on your levels. It shows what food spikes you.

    My suggestion as a first port of call would be to stop worrying about reacting to your levels. Stick to your normal regime I.e eat have your insulin and react after 4 hours.

    However keep checking at regular intervals and start examining the results. For example. An hour after breakfast my sugar would be high. After 4 hours it would be back within normal levels. Why well I started understanding cereal and toast caused uncontrollable spikes. Now I have changed to scrambled eggs. I can see the results clearly on my libre.

    I have also started seeing when my levels rise before bed and in a morning so have tweaked the times of my long acting.

    This has taken me a couple of months of carefully looking at patterns and food and asking people on here why foods react differently. It is only now I have started understanding it and only now on my 4th sensor am I started to see very slightly positive results.

    I am no expert but this would be my advice. Relax on the corrections a bit and start analysing I promise it will be worth it
     
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  19. tim2000s

    tim2000s Type 1 · Expert
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    Hi Jinty, what you're highlighting is that in order for it to be available on the NHS, education in interpreting the results is required.

    The best way to do adjust the timing of your bolus is to move it earlier in five minute increments until you see the post meal profile that you are happy with.
     
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  20. noblehead

    noblehead Type 1 · Guru
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    No problem @jinty73 :)

    Do buy the book though, it comes highly recommended by many of the type 1's here on the forum as it gives you the basic tools to manage your diabetes effectively.

    Best wishes and good luck.
     
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