Libre on NHS

[smc4761]

As I understand it from the response letter, there wont be any movement on Libre in Lanarkshire until after June....

Is that right?

Thats the way that I read it as well. But hey ho I have waited 6 months so another few months is not going to make much difference

 

[smc4761]

Crunch day today for me Seeing the diabetic consultant this afternoon to discuss if I qualify for the Libre on the NHS. I fulfill 2 of the requirements put out by my local CCG so he will have to have a good reason not to agree to it.

Hope it goes well for you today. As a matter of interest what criteria have your local CCG put in place

 

[NoKindOfSusie]

@NoKindOfSusie have you see a diabetic psych yet? it helped me. You can ask GP/DSN to see one, it doesn't constitute failure.

You are the second person to say that in ten minutes.

No.

 

[novorapidboi26]

Thats the way that I read it as well. But hey ho I have waited 6 months so another few months is not going to make much difference

I've not even been able to ask anyone about it as I haven't had a clinic in over year.....

but I am not in any rush for it fortunately....

 

[Copernicus]

Well attended clinic yesterday and saw a consultant. Very nice man but very apologetic that he could not prescribe me Libre as I did not fulfill any of the requirements set by my local CCG. He was very pleased with my HBA1's which are running at 42 and agreed it was down to my extended use of Libre. He was not allowed to accept my argument that I was testing more than 8 times a day as the tests had to be done by finger pricking. He also agreed with me that if I continued to use Libre, but also started finger pricking at least 8 times a day, then in 3 months I would be entitled to claim Libre on the NHS. Stupid, stupid system.
I am now beginning to wonder if I can sue my local CCG for the constant pain they insist that I inflict on myself, when a pain free alternative is available.
I'm sorry to say but I think the whole hoopla about getting Freestyle on the NHS has been handled badly both by the government and Abbott themselves.I, like most other users were led to believe that this was a new dawn of pain free blood testing and it quite clearly isn't.

 

[db89]

After an appointment yesterday I found out that I will fit the profile for getting it required except that I must go through structured education first so that I can better understand the tools available to me. Obviously I'll do this when the opportunity arises but I feel it a bit of a silly hurdle when I've already had the trial. Those 2 weeks when I used it gave me some of the best data I've had so far. Hey-ho, hoops is hoops and I guess I'll have to jump through them.

 

[Deleted Account]

After an appointment yesterday I found out that I will fit the profile for getting it required except that I must go through structured education first so that I can better understand the tools available to me. Obviously I'll do this when the opportunity arises but I feel it a bit of a silly hurdle when I've already had the trial. Those 2 weeks when I used it gave me some of the best data I've had so far. Hey-ho, hoops is hoops and I guess I'll have to jump through them.

I can understand your frustration about the education but I think there is so much that a CGM or Libre can offer that many people miss. So, I am really pleased to see some areas are putting together some education rather than just sending people off with a tool they know how to get 20% of the value from.
For example, learning about the 15 minute lag, learning how it is less accurate at high and low readings, learning how to read the trends and make changes to your treatment based on this, ...
I compare using a Libre to replace finger pricks to someone who buys a smart phone and only makes phone calls - they may as well have a cheap Nokia and play Snake.

 

[jlarsson]

I compare using a Libre to replace finger pricks to someone who buys a smart phone and only makes phone calls - they may as well have a cheap Nokia and play Snake.

Snake 2 on my old Nokia 3310 was an excellent game in fairness, only beat by 2048 as far as mobile friendly games as far as I'm concerned.

I've said this before but I consider myself extremely fortunate to get my Libre outside of the NHS under different regulations. There really are no excuses outside of funding for not providing them for type 1s regardless of their control.

 

[db89]

I can understand your frustration about the education but I think there is so much that a CGM or Libre can offer that many people miss. So, I am really pleased to see some areas are putting together some education rather than just sending people off with a tool they know how to get 20% of the value from.
For example, learning about the 15 minute lag, learning how it is less accurate at high and low readings, learning how to read the trends and make changes to your treatment based on this, ...
I compare using a Libre to replace finger pricks to someone who buys a smart phone and only makes phone calls - they may as well have a cheap Nokia and play Snake.

I get it and I understand why - the only reason I don't have one now is cost. I gave it so much use through the 2 weeks and it helped me to see what was happening in between finger pricks which is the data I'm missing right now. It wouldn't really reduce my finger pricking except for some after meal results. I'm over the threshold of 8/day on average mainly due to driving.

Sticking with your phone analogy - I'm the guy that has an Android because iOS is too restrictive for my usage.

 

[Deleted Account]

I get it and I understand why - the only reason I don't have one now is cost. I gave it so much use through the 2 weeks and it helped me to see what was happening in between finger pricks which is the data I'm missing right now. It wouldn't really reduce my finger pricking except for some after meal results. I'm over the threshold of 8/day on average mainly due to driving.

Sticking with your phone analogy - I'm the guy that has an Android because iOS is too restrictive for my usage.

Knowing what happens between finger pricks is great but many people don't know what to do with this data.
I hope the education provides training on how to adjust our doses based on this data - for example, how to decide that your basal is too high or too low, how to tweak your insulin to carb ratios at different times of the day, ... rather than just correct and move on.
Many people on this forum may know how to do this ... but many people with diabetes, who may get a Libre, do not invest as much time and effort as the average forum contributor,
And I think it is better that the NHS assume less knowledge and provide the training rather than assuming more knowledge and tax payers money is wasted.

That is not a dig at you ... or anyone else on this forum... it is a general observation
(some may say of Apple sheep but I wouldn't dare to )

 

[db89]

Well, it's DAFNE - which is something I've been wanting to do anyway but so far as I know or have read it's not got any elements regarding Libre or CGM usage. I worked out and adjust all my time blocks for bolus doses in my Accu chek meter myself (and still do occasionally partially due to honeymoon).

The area I feel I could do with the help most prominently now is the guesswork surrounding food - something I'm hoping DAFNE will bring something useful to the table. Apps like Carbs and Cals are only helping me to a point where I don't have the information available.

Could be I'll have a 'sod it' moment at some point and splurge some credit to get a Libre for a bit. Baa-aa!

 

[Scott-C]

After an appointment yesterday I found out that I will fit the profile for getting it required except that I must go through structured education first so that I can better understand the tools available to me. Obviously I'll do this when the opportunity arises but I feel it a bit of a silly hurdle when I've already had the trial. Those 2 weeks when I used it gave me some of the best data I've had so far. Hey-ho, hoops is hoops and I guess I'll have to jump through them.

Oop's cross-posted, edit to add just noticed you say it'll need to be dafne.

The set up in your area might be different from mine here in Lothian, but the education session we had was just a brief hour long meeting where a consultant ran through a few slides showing the basics of how libre worked.

Before we went, the letter we got told us to go online and sign up to Abbot's grandiosely named "Academy", run through the lessons, answer a few questions and print off a certificate and take it to the meeting to show we'd done it.

It was also a condition that we'd done dafne or equivalent, or could otherwise show sufficient knowledge of T1 management, so that was fairly flexible. I'd done dafne a couple of years aho.

You mention needing to do structured education - I don't know whether they mean something like the short hour long introduction or something like dafne.

So, sure, a few hoops, but, all in all, it wasn't much to do to save 100 quid per month!

 

[Copernicus]

A little update, I have discovered you can buy the sensors over the counter at the following pharmacies.
Asda £44 each, Superdrug and Boots £35 each. A saving of between £13 and £22 from the Abbotts site. No way will I be paying Abbotts rip off price any more.

 

[smc4761]

I am lucky that I completed a 4 day ADAPT course, which is Lanarshire equivelant of DAFNE so heres hoping that I fit the criteria

 

[smc4761]

Well some good news for me. The diabetes centre at my local hospital called me today to advise that I will be getting the Freestyle Libre on 4 June. They have advised that I fit the criteria. I was so excited that I forgot to ask what the criteria was, apart from the fact that I check my bloods 8 times a day (which I dont). They are only giving out 12 per month.Now in my area we have a high incidence of type 1 so this will take years to roll out

Its a start and I am so blessed to have been chosen. Feel sorry for those who may have to wait. Hopefully we can all put pressure on our local health boards and everyone can gain from this great advance

 

[22nw22]

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

I think the funding was only for a new meter and not a sensor hopefully July appt confirms that it was only a meter being funded and not a sensor.

 

[videoman]

The funding in Devon states that they will supply the reader and 6 months wort of sensors and only via a hospital consultant

 

[kev-w]

Harrogate & rural district have approved conditional use for T1s, using the RMOC guidelines....

http://www.harrogateandruraldistric...re-commissioning-statement-final-27-07-18.pdf

 

[videoman]

Tried to start my first use of the senser and guess what ,it's faulty? So they are sending a replacment foc

 

[kev-w]

Leeds CCG https://www.leedsccg.nhs.uk/news/freestyle-libre-flash-glucose-monitoring-update/