Libra In Se London ??

MrGrumpyD

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All these questions !
....banging head on table ....
Still no news to ....IF And WHEN ....we will ever get the patch in Lewisham and Greenwich NHS area .. the CCG made mind up but no one knows how and if thy are going to put it on prescription..

.
.anyone heard anything at all ???
 

tim2000s

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MrGrumpyD

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All these questions !
Yup. SE London CCG groups will apparently be making a decision in October:http://www.lambethccg.nhs.uk/news-a...nt PS-004 Freestyle Libre FINAL July 2018.pdf


I was told they made them on the nhs .. what hey doing now is working out how to hand them out !!!!!!

It’s ok CCG... keeping my right leg and having a QUAD by pass on heart is not stressing me out enough as it is mate no ......
*** these dam people holding us all to dam ransom ....


Anyway ..... as am not to get stressed ... guess I will forget the patch as they want me to go on that bloody pump
...not happing ...
well next year I guess it will be then ....... Boooooooo
Thanks Tim
 

tim2000s

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Hey @MrGrumpyD, I’ve contacted the SE London area Prescribing Committee to ask them to explain why they continue to not prescribe the Libre.

I thoroughly recommend that you do too. This is the email address:

[email protected]

And this is the content of my email:
Dear Sir or Madam,

I am writing as a patient to request further justification for your lack of provision of Freestyle Libre on prescription.

Clear guidance has been issued by RMOC (to which you refer in your most recent position paper) as to who should receive the Libre on prescription and in addition, guidelines for London have also been provided.

Yet you, as a committee, continue to prevaricate about providing access in South East London, hiding behind the excuse of “providing a more detailed plan” and “staff and patient training to provide safe and effective prescribing”. This seems to ignore the point that this product has been available for the general population to purchase for nearly four years.

For many users, who would already qualify under the London guidelines, the savings they would gain from not having to pay for the Libre themselves could easily be achieved by allowing prescriptions for those who asked for them and who meet the guidelines. This would also allow those people to continue to provide effective self care, reducing the long term cost to the NHS.

The requirement for “safe and effective prescribing” looks like an excuse to avoid innovation than a real requirement given the already widespread use of Libre.

Whilst I understand that for prescribing with new users, training is necessary for both patient and healthcare professionals, this should not be stopping Libre being prescribed for existing users, especially as it has been available in the NHS BSA tariff since November last year.

You have also placed no deadline on your decisions and your previous publications on this matter suggest that you’ll continue to use that to push out any decision for as long as you can.

Please can you explain, in a response to this email, the reticence of the South East London Area Prescribing Committee to adhere to London Regional Guidance in allowing prescription of the Libre, why you haven’t given yourselves a deadline to make a decision and why you think that the SE London APC knows more than national and regional bodies on this topic and feels the need to add another layer of bureaucracy to this process?

I’d be happy to attend your next APC meeting to take this point further.

Thanks in advance,

Yours faithfully,
 

ringi

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Does Hammersmith and Fulham CCG offer libra if so why not use
https://www.gpathand.nhs.uk as they used an application to lowal access to their GPS regardless of where you live in London. Remember the CCG is decided on where you GP is not where you live.
 
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D

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I can understand your frustrations at not getting the LibrE on prescription.
However, I would recommend slight caution.
The Libre does not work for everyone - I have tried it and other CGM and found none provide accurate or consistently inaccurate readings for me and I am not alone with this.
Not sure if I have strange blood, a move too much and dislodge the sensor or something else.
But there seems to be lots of frustration vented (understandably) that people do not have access to a tool which doesn't always do the job.
Don't pin your hopes of good control and less finger pricks on the Libre: it doesn't deliver for everyone and there seems to now be a growing group of people who can't use it due to reactions to the sticky.
 

becca59

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There are a vast amount of people who develop allergic reactions. Myself included. What is apparent is that this occurs months after usage has started. Starting off minor it becomes unbearable to wear one. The terrible thing being that you are sucked into the benefits and freedom of wearing one and it is devastating to then have to go back to blood tests.
There needs to be a lot of work done yet by Abbott for this product to be universally useable.
 

BeccyB

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I was told they made them on the nhs .. what hey doing now is working out how to hand them out !!!!!!

It’s ok CCG... keeping my right leg and having a QUAD by pass on heart is not stressing me out enough as it is mate no ......
*** these dam people holding us all to dam ransom ....


Anyway ..... as am not to get stressed ... guess I will forget the patch as they want me to go on that bloody pump
...not happing ...
well next year I guess it will be then ....... Boooooooo
Thanks Tim


Can I ask why you don't want to have a pump? The main reason I've come across is that people don't want something attached to them 24/7, yet you want to use the Libre - just curious
 
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richyb

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I can understand your frustrations at not getting the LibrE on prescription.
However, I would recommend slight caution.
The Libre does not work for everyone - I have tried it and other CGM and found none provide accurate or consistently inaccurate readings for me and I am not alone with this.
Not sure if I have strange blood, a move too much and dislodge the sensor or something else.
But there seems to be lots of frustration vented (understandably) that people do not have access to a tool which doesn't always do the job.
Don't pin your hopes of good control and less finger pricks on the Libre: it doesn't deliver for everyone and there seems to now be a growing group of people who can't use it due to reactions to the sticky.
I also found libra accuracy after the first week to be not good. I was paying £50 each. They were also difficult to get them to replace a sensor. I also tried diacom g4 which was better but only lasted about 10 days. Most accurate is blood tests.
 
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MrGrumpyD

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Type 1
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All these questions !
Can I ask why you don't want to have a pump? The main reason I've come across is that people don't want something attached to them 24/7, yet you want to use the Libre - just curious

Patch is a patch .. can be removed at any point ... pump is a line in to the body .. can not be removed at any time ...
 

MrGrumpyD

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Type 1
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All these questions !
You can get tubeless pumps now, I have one - it’s brilliant!

Sorry .. how is that a pump if no line in to the body ? And if no line in to body how is the insulin getting in .... sorry never heard of it
 

LooperCat

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Sorry .. how is that a pump if no line in to the body ? And if no line in to body how is the insulin getting in .... sorry never heard of it
It’s called an Omnipod, a really self contained, wireless, disposable pump that is replaced every three days and controlled with a remote. It self-inserts a tiny cannula within its own footprint, so technically it has a line in, but you can’t see it or catch it on anything.
 
D

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Patch is a patch .. can be removed at any point ... pump is a line in to the body .. can not be removed at any time ...
A pump can be removed.
I remove my tubey pump every time I shower, often when I exercise and every other day when I change the insulin cartridge.
In addition, if you want a pump holiday you can go back to injection at any time.

You comment suggests you do not have the full pump picture.
My CCG offered an informal pump introduction talk with someone using a pump which helped explain things like this.
 

MrGrumpyD

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37
Type of diabetes
Type 1
Treatment type
Insulin
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All these questions !
A pump can be removed.
I remove my tubey pump every time I shower, often when I exercise and every other day when I change the insulin cartridge.
In addition, if you want a pump holiday you can go back to injection at any time.

You comment suggests you do not have the full pump picture.
My CCG offered an informal pump introduction talk with someone using a pump which helped explain things like this.

An yet you still have a hole in your tummy ... I have whole pic thanks
 

LooperCat

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I’ve found you get a worse “hole” after removing a Libre sensor - while the filament is smaller, it’s in for two weeks as opposed to the pump cannula which is in for two-three days. Both marks disappear in a couple of days, I usually put a dab of Nepanthen nappy cream on the skin where the device has been.

FWIW you don’t have to wear a pump on your belly, you can put it anywhere you’d inject. I prefer putting mine on my legs. This current one is on my calf, I don’t even know it’s there.