Type 1'stars R Us

[slip]

it's almost as though the diabetes planets are all out of sync

I've just read an article that says about the 5 brightest 'stars' lining up this week - aka 5 planets, so what ever happens to any of us we can safely say it is due the current alignment of planets (good or bad!)

 

[Juicyj]

I've just read an article that says about the 5 brightest 'stars' lining up this week - aka 5 planets, so what ever happens to any of us we can safely say it is due the current alignment of planets (good or bad!)

If all else fails it's either connected to the lunar cycle or astronomy, as i'm not religious this fits well with my belief system and i'm sticking with it

 

[Juicyj]

That's frustrating @helensaramay When you work so hard at something you should be given access, I am sure you can dig around in the NICE guidelines to quote a reference in regards to 'affecting your quality of life in regards to the amount of effort required to manage your condition' etc as a good argument to support your case, I have given up asking as our CCG is unlikely to be prescribing it in the next couple of years at least.

 

[Alison54321]

I've just received an email from my DN and my feelings are ... mixed.

First off, I am very impressed she replied in less than 24 hours.
As I mentioned previously, following my recent Libre experience, I was going to ask for Fiasp at my next appointment.
Then, I went to ask my local pharmacist if he could sell me my future Libre.
He hadn't heard of them until last week when he completed his first prescription for them. But he would look into whether he could sell them and got in touch with his supplier straight away. Meanwhile, I was thinking "Hmmmm, when I had my last diabetes review, I was told they didn't prescribe Libre in my CCG. This has clearly changed."
So by the time, Javier (what does it say about me that I am on first name terms with my pharmacist?") called me back, I had decided I would try again to get them on prescription at my next appointment.
That was until I did a little calculation and realised my next annual review was at least 5 months away.
"Sod that for a game of soldiers", I thought. Why should I wait that long.
So, last night, I put fingers to my keyboard and send an email to my DN to request Libre and Fiasp.

She replied first thing this morning.
In short, yes to Fiasp, no to Libre.

The longer Libre answer was I didn't satisfy the criteria "as you have such excellent control which I fully appreciate is due to your hardwork. I know this is very frustrating as I know that you would use it to its full potential but at present we cannot offer it."

And now I feel I need a Libre when I swap insulin to form any sensible conclusions.

Unfortunately, whilst my local pharmacist can get Libre for me, they are expensive so I have to wait until I next go climbing to call into Asda 15 miles away to get them cheaper.
They are on order so it shouldn't be a wasted journey. Unless the pharmacy closes before 10pm (or later if my sat nav has a funny turn because I have never been there).

Sorry for the long waffle. I had to get it off my chest.

That's ,more than a little bit annoying, so near and yet so far.

I saw something on twitter the other day that was interesting. Was Partha Kar talking about getting an email because a GP LMC had ignored the local CCG and prescribed libre anyway. The ensuing conversation was between him and someone else saying that because they are independent contractors they can prescribe them despite the CCG not funding them, because they can argue it's in the patients best interest, and the |CC|G| doesn't have the power to overrule that, or something along those lines.

I don't understand bureaucracies, I just prefer it that way, but there might be an option to apply pressure on your GP, and see if you can push them into moving beyond the CCG guidance. I assume it would have to be agreed by the LMC. But pester power might be an effective tool here.

I don't understand bureaucracies, but there appear to be cracks appearing all over the place in the walls that have been put up against prescribing it, so it's worth trying to push them some more.

 

[Tony337]

11.8 this morning and it wasn't coming down despite some novorapid.
I debated whether to add a bit more but decided against it and the next thing you know I'm 4.2.
Had some toast and some more novorapid and I'm currently reading 10.2 but as I'm about to get a wriggle on it should drop nicely.
I'm getting back into a routine since my jollies and it usually takes a few days.

Happy days

Tony

 

[LornaFarrell]

8.1 at breakfast time, so it was probably lower when I woke up but I forgot to test. I seem to have finally got my lantus dose about right at 60 units, but it’s just not lasting. Must find the email for the diabetes team at the hospital and see if they want me to change to something else.

 

[becca59]

I've just received an email from my DN and my feelings are ... mixed.

First off, I am very impressed she replied in less than 24 hours.
As I mentioned previously, following my recent Libre experience, I was going to ask for Fiasp at my next appointment.
Then, I went to ask my local pharmacist if he could sell me my future Libre.
He hadn't heard of them until last week when he completed his first prescription for them. But he would look into whether he could sell them and got in touch with his supplier straight away. Meanwhile, I was thinking "Hmmmm, when I had my last diabetes review, I was told they didn't prescribe Libre in my CCG. This has clearly changed."
So by the time, Javier (what does it say about me that I am on first name terms with my pharmacist?") called me back, I had decided I would try again to get them on prescription at my next appointment.
That was until I did a little calculation and realised my next annual review was at least 5 months away.
"Sod that for a game of soldiers", I thought. Why should I wait that long.
So, last night, I put fingers to my keyboard and send an email to my DN to request Libre and Fiasp.

She replied first thing this morning.
In short, yes to Fiasp, no to Libre.

The longer Libre answer was I didn't satisfy the criteria "as you have such excellent control which I fully appreciate is due to your hardwork. I know this is very frustrating as I know that you would use it to its full potential but at present we cannot offer it."

And now I feel I need a Libre when I swap insulin to form any sensible conclusions.

Unfortunately, whilst my local pharmacist can get Libre for me, they are expensive so I have to wait until I next go climbing to call into Asda 15 miles away to get them cheaper.
They are on order so it shouldn't be a wasted journey. Unless the pharmacy closes before 10pm (or later if my sat nav has a funny turn because I have never been there).

Sorry for the long waffle. I had to get it off my chest.

Apparently Theresa May has just been asked a question about Libre availability and dodged the question in PMQs. Didn’t see it myself but picked it up elsewhere. You couldn’t make it up.

It’s classed as a red drug here in Leeds so will see pigs flying before I get one for free.

 

[Alison54321]

I don't understand bureaucracies either but my DN sent me the criteria and accepts that I will be asking every time I see or write to her. Basically, the criteria is that you can have a Libre if I have had 2 episodes of DKA in the last year or I might be entitled to a pump and they'd like to see if the cheap option of Libre would be "good enough" (I am paraphrasing a tad here). I don't want to have DKA twice to prove I need it (apart from anything else that would mean I would lose my driving license) and I already have a pump.
My GP (or GP surgery) doesn't seem to understand anything about type 1 diabetes beyond doing what the team at the hospital team tell them to do (and sometimes they get this wrong) so I know the GP brick wall is much much harder than the hospital team brick wall to hit my head against.
I will try again in 6 months (at my next annual review) to get it on prescription. In the meantime, I will fund my own Libre every 6 weeks.

You can't do much if you haven't got a sympathetic GP.

 

[db89]

Apparently Theresa May has just been asked a question about Libre availability and dodged the question in PMQs. Didn’t see it myself but picked it up elsewhere. You couldn’t make it up.

It’s classed as a red drug here in Leeds so will see pigs flying before I get one for free.

She has indeed:

Edited because the BBC quote doesn't cover the full exchange.
https://www.c-span.org/video/?c4755...parliament-half-truths-nhs-libre-prescription

Pretty much ignoring what @helensaramay has brought forward today - it's available but not for everyone who could benefit from access to it because of regional limitations. It must be frustrating to be told you manage 'too well' to get a tool which can help you continue to do that - disheartening almost.

I expect a similar response at my next appointment when I ask - despite jumping through the DAFNE hoop I was asked to.

 

[Fairygodmother]

Apparently Theresa May has just been asked a question about Libre availability and dodged the question in PMQs. Didn’t see it myself but picked it up elsewhere. You couldn’t make it up.

It’s classed as a red drug here in Leeds so will see pigs flying before I get one for free.

I saw the question time where she was asked - BBC News app - and her answer could have been given by a Machiavellian weasel!

 

[Fairygodmother]

Mel, that speedy bug looks truly hideous - just googled it and it may be your next best friend, unless you’re fond of spiders
https://www.theweathernetwork.com/a...id-of-centipedes-scutigera-coleoptrata/100788

 

[Alison54321]

She has indeed:

Edited because the BBC quote doesn't cover the full exchange.
https://www.c-span.org/video/?c4755...parliament-half-truths-nhs-libre-prescription

Pretty much ignoring what @helensaramay has brought forward today - it's available but not for everyone who could benefit from access to it because of regional limitations. It must be frustrating to be told you manage 'too well' to get a tool which can help you continue to do that - disheartening almost.

I expect a similar response at my next appointment when I ask - despite jumping through the DAFNE hoop I was asked to.

Just watched it, dreadful reply. She starts waffling on about libre not being the only cgm available on the nhs. I'm wondering if she doesn't even realise it's even harder to get a cgm than libre. Is she obfuscating or out of touch, or both, most likely.

 

[kev-w]

That's ,more than a little bit annoying, so near and yet so far.

I saw something on twitter the other day that was interesting. Was Partha Kar talking about getting an email because a GP LMC had ignored the local CCG and prescribed libre anyway. The ensuing conversation was between him and someone else saying that because they are independent contractors they can prescribe them despite the CCG not funding them, because they can argue it's in the patients best interest, and the |CC|G| doesn't have the power to overrule that, or something along those lines.

I don't understand bureaucracies, I just prefer it that way, but there might be an option to apply pressure on your GP, and see if you can push them into moving beyond the CCG guidance. I assume it would have to be agreed by the LMC. But pester power might be an effective tool here.

I don't understand bureaucracies, but there appear to be cracks appearing all over the place in the walls that have been put up against prescribing it, so it's worth trying to push them some more.

I put a Twitter linky up to something similar, (long story short) the thought being that the device is now on the drugs tariff and so if the GP has the b**ls to take the CCG on he can prescribe if beneficial to the patient (long story short).

I do like that Dr Kar guy even tho he told me off for my sarcastic approach to a couple of CCGs I was trolling

 

[kev-w]

Just watched it, dreadful reply. She starts waffling on about libre not being the only cgm available on the nhs. I'm wondering if she doesn't even realise it's even harder to get a cgm than libre. Is she obfuscating or out of touch, or both, most likely.

I've trolled her 10 downing street Twitter too

 

[db89]

Just watched it, dreadful reply. She starts waffling on about libre not being the only cgm available on the nhs. I'm wondering if she doesn't even realise it's even harder to get a cgm than libre. Is she obfuscating or out of touch, or both, most likely.

Whether she just doesn't know all the details or whether she was holding back a half truth I can't definitely say - but it came across as waffling and excuses to me!

Although it is not explicitly mentioned in the criteria, I wonder whether they will also do any unofficial means testing - if you can afford to fund the Libre yourself, there is no need for the NHS to pay for it

The cynic in me is inclined to agree - but wouldn't something like this have been leaked by someone privy to insider knowledge by now? Or are you meaning at a CCG level where it has been omitted from individual areas' criteria in publicly available documents?

 

[smc4761]

I've just received an email from my DN and my feelings are ... mixed.

First off, I am very impressed she replied in less than 24 hours.
As I mentioned previously, following my recent Libre experience, I was going to ask for Fiasp at my next appointment.
Then, I went to ask my local pharmacist if he could sell me my future Libre.
He hadn't heard of them until last week when he completed his first prescription for them. But he would look into whether he could sell them and got in touch with his supplier straight away. Meanwhile, I was thinking "Hmmmm, when I had my last diabetes review, I was told they didn't prescribe Libre in my CCG. This has clearly changed."
So by the time, Javier (what does it say about me that I am on first name terms with my pharmacist?") called me back, I had decided I would try again to get them on prescription at my next appointment.
That was until I did a little calculation and realised my next annual review was at least 5 months away.
"Sod that for a game of soldiers", I thought. Why should I wait that long.
So, last night, I put fingers to my keyboard and send an email to my DN to request Libre and Fiasp.

She replied first thing this morning.
In short, yes to Fiasp, no to Libre.

The longer Libre answer was I didn't satisfy the criteria "as you have such excellent control which I fully appreciate is due to your hardwork. I know this is very frustrating as I know that you would use it to its full potential but at present we cannot offer it."

And now I feel I need a Libre when I swap insulin to form any sensible conclusions.

Unfortunately, whilst my local pharmacist can get Libre for me, they are expensive so I have to wait until I next go climbing to call into Asda 15 miles away to get them cheaper.
They are on order so it shouldn't be a wasted journey. Unless the pharmacy closes before 10pm (or later if my sat nav has a funny turn because I have never been there).

Sorry for the long waffle. I had to get it off my chest.

I feel your pain Helen, so basically if you became out of control potentially putting your life at risk you "might" get a Libre. What a shocking attitude from some CCG.

Meanwhile some wee jakey wants his daily dose of methadone and of course they get that, no questions asked. So infuriating.

I know the NHS does not have a bottomless pit of money but they seriously need to prioritise where the funds are spent.

Its early days for the Libre but the results from some studies, I think Scott C posted one a few weeks ago, showed people with Libre showed a huge improvement in the HB1AC.

I was very fortunate I got one about 5 months ago and my figures are the best they have ever been in 37 years. Libre gives you the knowledge to control your BG, ultimatley giving you better control therefore in longterm less complications therefore less cost to NHS.

I am wondering could Diabetes UK try a test case through the courts and we are being denied something that could greatly improve our quality of life

 

[Alison54321]

Whether she just doesn't know all the details or whether she was holding back a half truth I can't definitely say - but it came across as waffling and excuses to me!



The cynic in me is inclined to agree - but wouldn't something like this have been leaked by someone privy to insider knowledge by now? Or are you meaning at a CCG level where it has been omitted from individual areas' criteria in publicly available documents?

I think part of the problem is that the CCGs agreeing fund recently are the laggards, and the ones most reluctant to fund, and so the criteria is getting narrower, and narrower.

They'll be guilt tripped into it eventually, but it's very frustrating, and also raises questions about what's the point of them.

The NHS could have funded a lot of freestyle libres for the cost of a CCG,

 

[DCUKMod]

The staff must of have good old chin wag about changing the colour, goes to show how long I haven't been on here. Well. I might post a photo of the said cake, it's not decorated yet, but her name will be on it and an 18th candle, she is working a half day tomorrow, so she will get her other prezzie's when she get's home ( Her main present is a 42 inch TV which she would like mounted on her bedroom wall, so her boyfriend has been roped in to do that)
How have you been keeping ?

Robinredbreast - The forum colours were changed, in order to meet accessibility standards for contrasts, for those with visual impairments. It wasn't just a whim.

 

[LooperCat]

Mel, that speedy bug looks truly hideous - just googled it and it may be your next best friend, unless you’re fond of spiders
https://www.theweathernetwork.com/a...id-of-centipedes-scutigera-coleoptrata/100788

I am very fond of spiders, there’s a cheeky chap living in the plant on my bathroom windowsill... Legsy McScuttleface will be released into the garage, where there are lots of bugs to keep it happy. It’s currently in a jar on my coffee table - now we know what it is, and that it’s harmless, we’ve become rather fond of it.

@helensaramay - that’s just exasperating and just so unfair.

 

[karen8967]

I've just received an email from my DN and my feelings are ... mixed.

First off, I am very impressed she replied in less than 24 hours.
As I mentioned previously, following my recent Libre experience, I was going to ask for Fiasp at my next appointment.
Then, I went to ask my local pharmacist if he could sell me my future Libre.
He hadn't heard of them until last week when he completed his first prescription for them. But he would look into whether he could sell them and got in touch with his supplier straight away. Meanwhile, I was thinking "Hmmmm, when I had my last diabetes review, I was told they didn't prescribe Libre in my CCG. This has clearly changed."
So by the time, Javier (what does it say about me that I am on first name terms with my pharmacist?") called me back, I had decided I would try again to get them on prescription at my next appointment.
That was until I did a little calculation and realised my next annual review was at least 5 months away.
"Sod that for a game of soldiers", I thought. Why should I wait that long.
So, last night, I put fingers to my keyboard and send an email to my DN to request Libre and Fiasp.

She replied first thing this morning.
In short, yes to Fiasp, no to Libre.

The longer Libre answer was I didn't satisfy the criteria "as you have such excellent control which I fully appreciate is due to your hardwork. I know this is very frustrating as I know that you would use it to its full potential but at present we cannot offer it."

And now I feel I need a Libre when I swap insulin to form any sensible conclusions.

Unfortunately, whilst my local pharmacist can get Libre for me, they are expensive so I have to wait until I next go climbing to call into Asda 15 miles away to get them cheaper.
They are on order so it shouldn't be a wasted journey. Unless the pharmacy closes before 10pm (or later if my sat nav has a funny turn because I have never been there).

Sorry for the long waffle. I had to get it off my chest.

One of the criteria for libre is to test at least 8 times aday cant yoy say that you do that and that is why you have good control because you test and correct multiple times