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Libre on NHS

Discussion in 'Type 1 Diabetes' started by Peppergirl, Sep 13, 2017.

  1. tim2000s

    tim2000s Type 1 · Expert
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    It had to be priced that way. In talking to both GP and Consultant, it seems that most T1s get put on the more expensive strips, so typically around £15 per pot. NICE evidence tops out at 8 strips a day providing best management, so if you use that, you arrive at £72 per month for strips.

    Oh, look at the price of the Libre sensors in comparison now!

    And of course, if you weren't aware, Abbott employees can get sensors for £20 each....
     
  2. slip

    slip Type 1 · Well-Known Member

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    Now busy scanning the Abbots webpages for job vacancies................;)

    So if you go to your doc and say I want you to prescribe me the Libre and that I'll purchase testing strips myself, they can't turn you down on ground of finance then?

    (however you then have to weigh up how many blood tests you will normally carry out and work out if that is cheaper for you........obviously as an individual you'll be paying a lot more then the £15 per pot than the NHS - in most cases I would imagine it would be cheaper for the individual.)
     
  3. donnellysdogs

    donnellysdogs Type 1 · Master

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    Anything regards Libre is going to take time to filter down. I dont really think there is any point in ringing nurses etc at the moment.
    It would be better to ring the FOI people in the CCG...otherwise we are just wasting our busy nurses time and the CCG wont actually realise how many people are waiting to hear.
     
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  4. slip

    slip Type 1 · Well-Known Member

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    Sorry perhaps I should put it a simpler way, If what Tim says is true (and I'm sure it is pretty much on the button!) the CCG can't deny the use of Libre sensors purely on financial grounds then? EDIT: so long as you buy the strips yourself.
     
  5. tim2000s

    tim2000s Type 1 · Expert
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    It's not worth doing that yet DD. Most clinics weren't expecting the announcements and it's down to them to get the care pathways put together for the CCGs to decide upon.

    What we need is for the clinics to work together and agree an approach that will be difficult to go against across the country, and use the same case with all CCGs. Once one is successful then it makes it that much harder for the others to say no as you have evidence within the NHS of where it has been approved. What we need to encourage our Diabetes Clinics to do is to liaise with Partha Kar to get a template for CCG submission together to ensure that there is the best possible chance of not being rejected by CCG/Local HEalth Authority.

    @slip We need to try and avoid reference to cost. Some of the people who will benefit most are those who aren't testing regularly as it takes the fingerpricking away. They will not win in a cost based argument.
     
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  6. slip

    slip Type 1 · Well-Known Member

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    I get that, sadly the CCGs works on big numbers, and have to take the 'average', they can't address everything for everyone where finance comes in. They will likely come up with an average number of strips used across all users, which obviously will be well below the 8/day NICE suggest........:mad:

    Lets call 8/day and also using a libre full time 'Gold Standard Level of Self Care'.

    Why are those not testing regularly doing just that? Some reasons might be the actual pricking, or the time taken doing a test, or the perceived non-ease of doing a test...........welcome to the Libre I say! Suddenly we've got more people on the gold standard level of self care, but also at a perceived higher cost to the NHS - but if NICE guidelines say 8/day then currently the NHS isn't following the guidelines and providing proper care........I know you can lead a horse to water and all that. Just thinking out loud :meh:

    If only the CCG/NHS could follow their own advice of 'good control now will reduce complications in the future' - spend a little bit now to save a fortune in the future!
     
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  7. donnellysdogs

    donnellysdogs Type 1 · Master

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    Ha, makes me laugh really. When I think how much I save on prickers and needles and as Tim has mentioned a while back... wouldnt an "individual" budget be great. Everything I save on needles, prickers could fund a libre for a little while!!

    I know I currently have a funded cgm but I do suspect that it will be refused in future and a Libre will be my option.
    I would willingly pay the difference to get cgm instead... but dont suppose that will ever be a choice..
     
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  8. Ashley13

    Ashley13 Type 1 · Member

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    Hi, I hope this doesn't come across as prying too much! But how did you get your CGM funded?

    I remember speaking to my health team before I got mine and explained to them that I no longer had hypo awareness whilst I was asleep and as I also work in the sports industry I was having to run my BG high to avoid lows (I teach children so really would be an inconvenience to have a hypo during a class!) I actually would not be able to continue with my work if I didn't have a CGM.

    I was basically told that they don't offer CGM funding and the only way I could get it was to self-fund. I know different areas have individual funding etc, just interested to see if it would maybe be a possibility for mine to get funded in future
     
  9. donnellysdogs

    donnellysdogs Type 1 · Master

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    I have complicated stomach and colon and had cancer as well. And cannot tolerate pump cannulas which meant going back to MDI.

    I was told that I wouldnt get because only 1 person had got one funded. Others with loss of driving licences etc hadnt got.

    They put in for exceptional funding case for me. I had to give written evidence. I sent in 11 pages of evidence and this time round full books of previous cgm data and my books that I log literally everything in.

    My health team were gobsmacked that I got a further 6 months funding. To be honest, I think a lot goes on how and what details the patients give.

    A libre goes in arm. I've had lymph nodes removed in both arms and it is an unknown as well for the risk of lymphodema from having a sensor lodged in arm constantly. So that should be enough for continuing for cgm in my buttocks.

    Mine waant based upon living and working etc it was based upon multiple complex health issues and it was on those grounds that it was allowed. Only got 5 months left so I am constantly aware of logging everything in my life and printing off daily graphs to highlight the difficulties I have. These will go as my evidence as well. However, I have it in my brain that I have to now also again to repeat info that a libre in arm is an unknown risk for lymphodaema.

    I was so offen told by my team "we dont think you'll get" that it makes me think that they are also not preparing their evidence strongly enough because they dont know us patients well enough. It is vital that patients submit good solid evidence..
     
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  10. Ashley13

    Ashley13 Type 1 · Member

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    Thank you for explaining this

    I definitely don't think I'll get funding any time soon after hearing everything you need to do just to get yours! Here's to hoping Dexcom becomes a little bit cheaper now some people may be moving to Libre
     
  11. videoman

    videoman Type 1 · Well-Known Member

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    My GP who follows Diabetes in my surgery has told me NO even thogh I have the senser,I am a T1 and have been since 1961so what can I do?
     
  12. tim2000s

    tim2000s Type 1 · Expert
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    Nothing right now. It's not available on the Drug Tariff until 1st November, and then it will have to be approved by your CCG. The reality for most people is that it won't be available, if it becomes available, until next year.
     
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  13. rockape37

    rockape37 Type 1 · Well-Known Member

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    Good news for some who find it reliable enough but even The manufacturer states that it doesn't replace your test strips and the results shouldn't be used for your bolus/ Carb calculations.

    I used it for 1 month in conjuction with finger pricking and found it to be out by as much as 2 mmol. However it was very good indicating which way your BG was going
    So for me not really good enough.
    If it could be calibrated against finger pricking then maybe it would be a useful tool.

    This should never replace finger pricking so beware.

    Regards

    Martin
     
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  14. Kayley7176

    Kayley7176 · Newbie

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    I do disagree a bit as the variations in test results are as much as 5 or 6 ml so the blood results could say 9 but u r actually 3 and hypo so not so good if ur awareness has gone
     
  15. slip

    slip Type 1 · Well-Known Member

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    And this is why I think it won't be available to all - the NHS will still have to fund testing strips and the Libre, I think you will need to be a special case to be able to have the Libre on Prescription and for a short period only until you get what ever issue it is sorted. Much like but hopefully less restricted, than getting a proper CGM on the NHS. I'd say don't get your hopes up too much guys!
     
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  16. novorapidboi26

    novorapidboi26 Type 1 · Well-Known Member

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    Basal testing.....that will be my argument......
     
  17. Mikew70

    Mikew70 Type 1 · Newbie

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    I often use it when exercising. Even on road runs. I use the app on my phone so I don't have to carry anything extra. It is really useful for the scenario you describe. I have never been comfortable blood testing in the gym so using Libre is great for me. The cost is high so getting added value from it in this way makes it more worth the expenditure.
     
  18. SockFiddler

    SockFiddler Type 2 · Well-Known Member

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    Lobbying Your Local CCG 101.

    All the CCG's I've had contact with through work (essentially the old Avon authority, now broken up into Bristol, South Glos, BANES and Somerset) have a list of conditions and diseases that they consider to be both expensive and patient-manageable. These typically include asthma, epilepsy and diabetes (all kinds) but may also include immunisation, HIV and so on, depending upon how your CCG functions.

    Because complications of these first three conditions are so expensive (when you factor in hospital admissions and community nursing costs), can have life-changing impacts on people who have them, and can often be managed by patients with some pro-active intervention and education, CCGs tend to consider them in their own categories and will discuss them separately. Thus you'll sometimes see a 3-month spate of asthma plan education courses being advertised, or epilepsy awareness and support groups or a push to get diabetes on every GP's agenda.

    With all that in mind, diabetes (whether type 1, 2 or otherwise) is considered to be the most expensive and avoidable of all 3, with both children's and adults commissioners giving it regular table time during meetings. It's one of the few things they actually do exercise authority over GP's for (you'll be surprised but GPs are relatively independent of their local CCG, for too many reasons to explore now) so the CCG can direct GPs, through incentives or co-planning or whatever, to change their approach somewhat (a good example of this is the increased take-up of the flu jab).

    This means that commissioners can inject funds into local health networks - hospitals, community nursing, GP surgeries - to increase specific interventions and improve specific pathways. But they don't do it lightly and only after an evidence-based discussion that looks at all areas of their authority's performance. Which means if you're hoping to persuade your local CCG to fund your Libre, you've got to demonstrate why it would ultimately save them money while improving health outcomes for your area and decreasing pressure on local services.

    You've got to know how and where to lobby and build a business case for it.

    Your CCG is directly answerable to your local Health and Wellbeing Board, which is made up of a collection of agencies including local council, commissioners, voluntary organisations and Healthwatch. Healthwatch is the public's way in to the Health and Wellbeing Board (unless you're connected to a voluntary org that has a chair at the table, then you lobby them directly).

    For more info on Health and Wellbeing Boards: https://www.kingsfund.org.uk/projec...Ob3T3nMy7j7V04-1CtUcDTuKZ__9_QahoCcw0QAvD_BwE

    On this page: http://www.healthwatch.co.uk you can find your local Healthwatch group and their contact info. Their role is to be the public voice at the H&WB, and they will work thematically through the year. So maybe for the first quarter, they'll be looking at mental health, the second will be hospital inpatient experiences, the third could be the quality of local care homes, who knows. Their choice of theme will be directly influenced by the local orgs they work with and the people who have been in contact with them. So the more people contacting them about a particular issue, the more they'll take notice.

    During that quarter, the issues raised by their theme - concerns, local issues, individual stories - will be raised as issues at the H&WB meetings, so put on the commissioning and political agenda. They have the ability to ask some very tricky questions, demand answers and then follow up if those answers are not forthcoming. In fact, their statutory reach is surprisingly long. Your local Health and Wellbeing Board should hold public meetings at least once a month and their minutes should be publicly available, which means you should be able to look back through previous meetings and see when diabetes was last discussed. Some H&WB keep diabetes, asthma and other "expensive preventables" constantly on their agenda, regardless of other issues.

    While you can contact Healthwatch at any time with any concern, comment or agenda, your voice - and therefore your need - will be amplified if your issue fits in with what they've picked for their current theme. It's also possible (if you're organised and there's a few of you) to persuade them to change their theme - so if self-management of diabetes - including the availability of the Libra - isn't in their immediate schedule when you first contact them, it's possible to get them to change it.

    It's totally possible to get the need for Libre local funding in front of your commissioners very quickly - even before Christmas. But you'll have to do a little legwork in your area first.

    - Contact any local diabetes groups and see if you can find support or whether anyone else is also campaigning for the same thing. It's just easier if you all work together, and you're more likely to get traction on your issue if the council / CCG is only having to respond to one group of people with one set of well-thought-out questions and points.

    - Look for the archived minutes of previous Health and Wellbeing Board meetings, probably on your Local Authority website somewhere, and research when diabetes was last on the agenda.

    - Find your local authority's current Health and Wellbeing Strategy (may also be called a vision, priorities or any number of shiny things). Frame your issue within the points it makes. For example, here's Bristol's:

    https://www.bristol.gov.uk/document...+to+2019/e8e8ab69-ca50-4eab-85d4-2753cf1255d6

    So I could easily argue that a CCG-funded Libre program hits 3 core values there (prevention, self-management, community voice), without even going through the blurb above it.

    - Get some facts and figures together. Your CCG is required to post annual health updates giving key facts and figures for your area, and diabetes should already be firmly near the top of their agenda, so info should be nice and clear.

    - Contact your local Healthwatch, find out what their current and next few topics are. Tell them why you're working on this, what it means to you. They may be able to link you in with others with similar goals.

    - Don't take it personally, don't be cynical, don't be impatient. The type of change you're hoping to make requires a lot of people making a lot of decisions and that takes both time and evidence. But if you prepare well and present yourself not as an adversary but as an advocate, you're more likely to win key people over to your way of thinking.

    Good luck! If you need me to give advice, read anything, help in any way drop me a PM. Even if it's a couple of hours on Skype helping you find your local resources, count me in :)

    Sock x
     
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  19. donnellysdogs

    donnellysdogs Type 1 · Master

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    Thank you for absolutely brilliant advice..
     
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  20. michaela2015

    michaela2015 Type 1 · Well-Known Member

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    I have to fund this myself so this is great news, I am getting the pump fitted so hopefully i will qualify, good luck people, i hope all those who want it get it xx
     
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