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Libre on NHS

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

  1. kev-w

    kev-w Type 1 · Well-Known Member

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    The Vale of York CCG released their final position statement today, they're broadly following the RMOC guidelines.

    So we'll see....
     
  2. leking

    leking Type 1 · Well-Known Member

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    Got accepted for mine in a prescription today from my clinic after my gp referred me.
     
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  3. scorpius14

    scorpius14 Type 1 · Active Member

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    Reading from eligibility criteria i probably won't pass their criteria because i've never tested more than 4 times a day in my life, never would i want to, and don't test most days, it will probably be a waste of resources in their point of view. I just see it as not needing to test my sugars because i'm going to inject the same amount everyday anyway.
     
  4. leking

    leking Type 1 · Well-Known Member

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    Are you T1? You should look into a course, taking the same amount of insulin every day shouldn't be the case anymore.
     
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  5. Scott-C

    Scott-C Type 1 · Well-Known Member

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    Here's how it turned out in NHS Lothian. Went along to a short course yesterday, and was given the attached letter to give to my gp recommending libre goes on my prescription, and a code to get 50 bg test strips per month from Abbott. No indications that this will have any knock on effect for normal strip allocation.

    Committee papers from the area Formulary had said that there was sparse clinical data about libre, but the consultant said that, although there was a bit of politics going on about pricing, at the end of the day it was a no brainer: he said they knew how difficult T1 can be to manage and if they were T1, they would want this to make it easier for themselves, so they were going to prescribe.

    So, there we have it, T1s in Lothian will get libre if they want it, no hoops to jump through, just need to agree to share data with the hospital, because, despite there being limited clinical data, consultants know it makes life easier.
     

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  6. Copernicus

    Copernicus Type 1 · Well-Known Member

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    Seems like most CCG's are digging their heels in over not funding this. I have done the following in order to bring attention to this problem. First I wrote to my local M.P. who was brilliant and took it up with the Health secretary, then I wrote to the Prime Minister and brought this system to her attention ( she now wears a sensor all the time) then I wrote to the Health secretary then I contacted my regions biggest local newspaper who did an online video article and a written article and of course I have written numerous times to my local CCG all to no effect. Now apparently there is a major problem with supply ! Feels like I am banging my head against a brick wall.
     
  7. kev-w

    kev-w Type 1 · Well-Known Member

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    Make a complaint to the CCG thru their 'patient relations' person, their web sites list these details (I've spent 3 months trolling mine on Twitter) :p, Work with the RMOC letter & the NHS England update they all received, same with your MP, quoting 'post code lottery' and point them towards the 2 mentioned documents, I was lucky in getting it on local radio (radio York) for a day, a decent article with interviews, every hour on the news etc,(the article is on the BBC website somewhere still for reference) you can also request to ask questions at the CCG governing body meeting.

    I get the banging of ones head again a wall, yesterday when I got to our town centre for the meeting I was told it had been cancelled due to there not being enough people for a quorum due to weather, but when I left the house at 08 00 it was still on (they moved the start time to 09 15 the day before) so I gave them an ultimatum in a very soft voice as I'd managed to get there, I basically said I wasn't moving until I'd asked the questions I'd listed, and if that meant me going hypo and needing an ambulance then it would be on their toes at their too late cancelled meeting.

    I left my mini meeting with the CCG commissioning statement 45 minutes later, freshly printed for me, I let the diabetes clinic know it was out and they were hoping it would be on line later yesterday.
     
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  8. Copernicus

    Copernicus Type 1 · Well-Known Member

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    Good for you, I think I will follow your advice and attend the next meeting of my CCG, in fact I would suggest everyone who is having trouble do the same thing.
     
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  9. stevieboy269

    stevieboy269 Type 1 · Member

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    It's a great product BUT ....... I have been self funding for over a year now and have seen an increasing delay in delivery times when reordering sensors. Despite asking on a number of occasions if production levels are going to be increased it's impossible to find out.
    The foreign call centre people can't tell you anything, when I ask for a callback from a UK representative no one ever calls back and when I contact the Abbott switchboard in the UK I get put through to the foreign call centre ..... It's a joke.
    Abbott's tracking system is a farce as it indicates items have been picked or dispatched in the warehouse when they haven't ...... this has been confirmed by the foreign call centre on several occasions now and believe it or not I have also been told the call center agent (or their supervisors) can't contact the warehouse for real time updates.
    My latest order was made on the 18th February (3 x weeks tomorrow) and still no proper news of it being picked or dispatch or expected delivery date.
    Latest News On Abbott Website

    Please Note:
    Due to the tremendous response to the FreeStyle Libre system, we are temporarily limiting orders to two sensors per order.
    Please be aware that currently it may take up to 3 weeks for your FreeStyle Libre sensors to be delivered. Check your confirmation email for details about free shipping on your next order.

    Great product but come on Abbott get your logistics sorted out as when more UK CCG's allow the Freestyle Libre on prescription there won't be enough product .... and this is in this country. What's it like in other countries around the world I wonder ????
     
  10. ringi

    ringi Type 2 · Well-Known Member

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    I expect that the logistics will change to them using a drugs wholesaler to supply chemists, so their own warehouse can mostly send out boxes of 50 at a time. But there may not yet be enough demand from chemists for a wholesaler to take it on.....
     
  11. 22nw22

    22nw22 Type 1 · Well-Known Member

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    Thank goodness I don’t qualify
     
  12. 22nw22

    22nw22 Type 1 · Well-Known Member

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    I take this back. The hospital is looking to get me a prescription for the Libre although I lost my reader. If they do so first they must give me a replacement Libre, then they must convince my GP to change the prescription to Libre sensors and guess what? In recent events of losing the Freestyle Libre reader forever, they had to get rid of the Freestyle Optium strips which blood samples are taken from and put Aviva test strips for my Aviva Expert. I lived a very long time with no sensors it will be weird to get back on them. I guess if it does happen I will have to get used to it. My mum did try stopping them as I needed bandages on otherwise my sensors would fall off I had them before they were even put on the NHS and stopped before then as well. Can't win all the time though. Guess if it does happen we will always buy bandages SEEMINGLY without reason.
     
  13. 22nw22

    22nw22 Type 1 · Well-Known Member

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    Also I got myself that not too long ago. (Aviva) Just a waiting game.
     
  14. smc4761

    smc4761 Type 1 · Well-Known Member

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    Well its been over 6 months now since the Libre was made available on prescription and its seems many health boards are dragging their heels. Lothian made the decision to issue them and I congratulate them on having the foresite to see the longer term benefits.

    Today I have written to my MSP to see if she can make Lanarkshire health board get their finger out.

    If you have not already done so, I would urge you to get your MP/MSP involved. Drop them an email and hopefully this will exert enough pressure on health boards to make a decision
     
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  15. Scott-C

    Scott-C Type 1 · Well-Known Member

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    I have an occasional look at a public petition about this being dealt with by the petitions committee at the Scottish Parliament. They wrote to each area and the responses are listed. There's one from Lanarkshire on 1 May saying they're waiting for the outcome of the Scottish Health Technology Group Assessment which us due in June.

    http://www.parliament.scot/gettinginvolved/petitions/diabetes

    I've had a trawl through the various links. One of the things that's bugging me is that they all refer to libre not being "proper" cgm as no alerts, the implication being that it's a useless second best to dexcom.

    I've never written to politicians before, but I'm highly tempted to fire something off saying (a) hypo alerts aren't needed during the day because you just need to scan every once in a while to pick up on a drop, (b) sure, alerts at night would be good, but it still goes a long way to sorting night drops by making basal checking much easier, and checking trend in the last few hours before going to bed (c) a £96 blucon transmitter turns it into cgm.

    One of the committee members, can't remember which one, mentions in the links she's a T1 who uses libre occasionaly.

    Hadn't heard of the SHTG before, might have a look round their site:

    http://www.healthcareimprovementscotland.org/our_work/technologies_and_medicines/shtg.aspx

    I'm in two minds whether petitions like this will achieve much - I think it will just be a case of other areas watching to see how things pan out in Lothian and then hopefully follow their lead - but there's a facebook group Type 1 Diabetes in Scotland and a related Scottish Freestyle Libre Equality Campaign saying they're looking for people to write to areas and MSPs:

    https://m.facebook.com/groups/Type1D/

    As Wallace might have said, "They can take our lives, but they'll never take our Freestyle Libres!"
     
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  16. urbanracer

    urbanracer Type 1 · Moderator
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    I was told directly over the phone by an Abbott person that they are now prioritising pharmacies. I suspect this is a condition of supplying the NHS. I also suspect that in the not too distant future, sales to joe public will be curtailed because it costs less to manage a few large accounts than it does to manage thousands of customers.

    If you can actually get anyone at your local Superdrug to answer the phone (I can't !) they're cheaper there anyway at a mere £35. Asda, Boots and Lloyds are selling at around £45. All claim to be able to get them within 2 days of placing the order - I shall be testing this for the first time on Tuesday.
     
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  17. smc4761

    smc4761 Type 1 · Well-Known Member

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    What annoys me Scott is that it has taken 6 months for Lanarkshire to even respond. They knew well in advance of November 2017 this was coming. They also keep referring to insulin pumps and CGM, which technically was not what the November agreement was about, that was more the funding of flash glucose monitoring, eg Freestyle Libre

    There was an article today in Scottish Sunday Mail from Danny McGrain, the former Celtic player and diabetic for 40 years, who explains the benefits he has had from using Libre. Maybe this high profile story will move things along
     
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  18. Scott-C

    Scott-C Type 1 · Well-Known Member

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    Aah, now, Danny McGrain, there's a name I remember from my dim and distant teenage years!
     
  19. smc4761

    smc4761 Type 1 · Well-Known Member

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  20. Scott-C

    Scott-C Type 1 · Well-Known Member

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