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Freestyle Libre Request

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
H

helizabeth

New Member
Relationship to Diabetes
Type 1
Hello all,
I am new here despite being type 1 diabetic since I was 9 so for nearly 20 years now. I was wondering if anyone can help or point me in the right direction? I do not have the free style libre yet and still have to test my blood the old school way. Now without going into such details i am still coming out the other side of the impact my teenager behaviour around my diabetes did to me. I have never managed to get back control of my testing my blood sugars and it’s really taking its toll on me. I feel like it is genuinely a deep routed psychological issue based on my past experiences and losing both parents maybe a way of control? However my diabetic nurse won’t give me the libre unless I have three months worth of testing at 8 times a day. The idea seems unmanageable and I have been trying to do it for 6 months now and I just shut down after a few weeks. Has anyone had any experience of getting the Libre any other way? I really feel like it will be the key to better control. If anyone has any ideas or guideance it will be greatly appreciated.
Many thanks for your time and apologies for the rant.
Holly
 
Hello and welcome to the forum Holly.
Someone will be along soon with a link to the criteria for qualifying for the Libre, perhaps have a look at that and see where you fit in.
Have you approached your GP for help in obtaining the Libre.
Sending you a hug as you sound as if you need one ((((((((((((((((((hugs))))))))))

Edited to add a link I found https://www.iddt.org/news/news-releases/freestyle-libre-available-on-the-nhs-from-april-2019 Now this is a year old so not sure if any changes have been made since then.
 
Many thanks for your reply, I did approach my GP but he wasn’t very helpful and pushed me back to the diabetes team. I appreciate there is a process but I just want to be as prepared as possible to fight my case.
Many thanks for your help.
 
helizabeth said:
Many thanks for your reply, I did approach my GP but he wasn’t very helpful and pushed me back to the diabetes team.
Click to expand...

It has to be done through a hospital team, I think. (That's one of the requirements on the funding, if I understand correctly.)
 
I would have thought that if you have a psychological problem with finger pricking and testing then the Libre should be considered in respect of that, but I know there are strict criteria for obtaining it because they want to prescribe it to those people who will most benefit from it. That said, my consultant sanctioned it for me back in February without specifically checking that I was testing often enough..... I am.... but no one actually checked the data. I am however still waiting to have the training for it so that they can prescribe it but in the mean time I have decided to self fund and my first sensors and reader are arriving this afternoon..... so excited!
I hope you manage to resolve the situation..... can you ask to see the consultant and see if you can persuade him/her of your case if the nurse is being a stickler for the criteria?
 
To get libre on prescription your diabetes team have to start the process and you should be given a trial for 6 months. I would speak to your team/consultant and see what they suggest.

There are guidelines but it is best to speak with your team and hopefully, they can put you on a trial. Let us know how you get on.
 
rebrascora said:
I would have thought that if you have a psychological problem with finger pricking and testing then the Libre should be considered in respect of that
Click to expand...

Yes, that's one of the criteria (or could be, anyway, in number 4). The criteria allow a diabetes team to recommend it to anyone they want, so beyond the more clearcut criteria (where they really ought to recommend a trial) it's really about what the team wants to do (presumably influenced by what the CCG wants).
 
If you were one of my family I'd fund it for you and if you can afford the initial investment, why not go for it? Then you'd be able to see if the ruddy thing does help you 'test' more and thus be able to identify both the good bits of your control and any not so good bits for 4 weeks (deal is reader and two sensors initially) - then present 'Madam' with the results, stress (with a sledgehammer if necessary) how much it's improved your psychological well-being - and ask for funding PDQ please! If it doesn't improve anything of course, only you will know that!
 
Hi Holly welcome to the forum, I`m afraid its a postcode lottery. Being on Insulin you would certainly be eligible in some areas but not all, its not up to the Nurse or Dr its up to your team to present the reason why they wish you to have a Libre to the CCG in your area.

Its 8 times a day in our area and for 1 month only, then you have a trial period of six months with the Libre to prove it works for you. As other knowledgeable members have said, please contact your team for help its the way to go.
 
It is obviously different here as my consultant has written me up for it permanently even though I haven't had a trial.... But I can't get it until I have a training course and C-19 has put that on hold (despite other people here on the forum doing the training online, so not sure if the DSN is spinning me a line) but I have decided to self fund in the mean time and today will be my first day. Really hope it is a game changer for me as almost everyone else seems to find. And I really hope you can get it prescribed.... certainly keep trying because the guidelines/criteria are changing all the time.
 
Bruce Stephens said:
I think this page links to the latest (NHS England) criteria: https://www.diabetes.org.uk/about_us/news/flash-criteria-nhs-england (which links to https://www.england.nhs.uk/wp-conte...unding-of-relevant-diabetes-patients-v1.2.pdf ).
Click to expand...
That Diabetes UK link also links to an "Advocacy Pack" which has a load of information on the criteria, how to make your case, and what you can do if your request is refused.
I wish you the best of luck - Libre has certainly been a life-changer for me.
 
The idea behind the mandatory National criteria was to do away with the post code lottery that had developed - CCG budgets were top-sliced and that funding had to be used for Libre - it couldn’t be diverted elsewhere.

So frustrating for you @helizabeth - do keep chasing up. I am not sure that 3 months is written down anywhere by NHS England, so if you have the energy you could push back on that and show the NHS England criteria from the original source?
 
Thankyou so much to eveyone for responding to my first message on here. I often feel alone in my journey and that I either find those on social media who are rocking there type 1 journey and I am very happy for them but for me it makes me feel worse. I’m going to speak to my diabetic nurse tomorrow and ask again if I fund it myself and it goes well would they then look at putting me on it. Originally I was told self funding doesn’t make any difference to them funding it in the future so I am very confused. I live in Cornwall and always feel like we are the last to hear about technology. Again Thankyou so much for all your help, it really doesn’t go unnoticed
 
Please feel free to stick around and do let us know how you get on with your quest for a Libre.

I know what you are saying about social media. I find Fb etc unbearable as everyone is living such exciting lives and it just makes me feel inadequate, but here on this forum we muddle along and have good days and bad and share our successes but also support each other on our less than good days.... and there can be quite a few of those.... so we understand the need to vent sometimes and provide a sympathetic ear, because we know how frustrating and lonely diabetes can be.
Lots of very knowledgeable people here with plenty of suggestions of tips and tricks to improve management and why not join our morning coffee community thread (it is actually titled "Group 7-day waking average") where we confess or celebrate our waking readings along with a bit of general chat about our lives, families, plans for the day etc. It is a way of making friends and getting to know everyone and have a bit of banter sometimes with people who face the same issues.

Anyway, good luck and I hope you are eventually able to get the Libre on prescription.
 
Bruce Stephens said:
It does say 3 months, yes:

who, in either of the above, are clinically indicated as requiring intensive monitoring >8 times daily, as demonstrated on a meter download/review over the past 3 months​
Click to expand...

Thanks Bruce! I should have looked it up again. Ole memory not what it was o_Oo_Oo_O
 
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