Type 1'stars R Us

[Cumberland]

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

I’m seeing the consultant next month and I’m going to ask her about getting libre I have the scanner already

I think all T1s in time will have the choice on the NHS whether they would like one or not

 

[becca59]

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.

Have yet to work out what you’ve changed. All looks the same to me!

 

[smc4761]

I may try this approach at my annual review although I am not using the readings to make lots of corrections. Being on a pump, I should be able to set the basal, insulin to carb ratio, etc. (based on historical data) so I do not need to make lots of corrections.
Regardless, I would not test this number of times a day if I self-fund the Libre!

The criteria in my area, Lanarkshire was you had to have attended the DAFNE course or equivalent, and test 8 times per day. Luckily i had a sympathetic DSN who put me forward for the Libre

 

[karen8967]

I may try this approach at my annual review although I am not using the readings to make lots of corrections. Being on a pump, I should be able to set the basal, insulin to carb ratio, etc. (based on historical data) so I do not need to make lots of corrections.
Regardless, I would not test this number of times a day if I self-fund the Libre!

I meant just to say you do just so you get libre on prescription i self funded for nearly 12 months b4 i was accepted this is what my dsn told me to say to consultant and it worked.really i think it should be prescribed to all type 1s as sometimes this diabetes lark does what it wants regardless of all our efforts .

 

[becca59]

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

And you usually have to have one other as well. ie an hypoglycaemic incident requiring outside help in the last year. Hypo unawareness.
Anybody could say they test 8 times a day. I could do it easily if it would get me the thing for free. Last time I was at the hospital I was told a large majority of type 1s test infrequently. I was frankly shocked.

 

[karen8967]

And you usually have to have one other as well. ie an hypoglycaemic incident requiring outside help in the last year. Hypo unawareness.
Anybody could say they test 8 times a day. I could do it easily if it would get me the thing for free. Last time I was at the hospital I was told a large majority of type 1s test infrequently. I was frankly shocked.

Do you have a libre becca

 

[LooperCat]

You can’t just SAY you test 8+ times a day, you need to prove it by showing your meter. And if you try hypo unawareness as a reason, you risk losing your driving licence. Same with the “hypo requiring outside help” reason. It’s maddenning.

 

[evilclive]

You can’t just SAY you test 8+ times a day, you need to prove it by showing your meter. And if you try hypo unawareness as a reason, you risk losing your driving licence. Same with the “hypo requiring outside help” reason. It’s maddenning.

Though at least now (since Jan 2018) you can have a hypo needing outside help without losing your licence if you were asleep. (my problem...).

(Still took 3 months to get my licence back, including the DSN saying "I don't think you should have one" - they apparently completely missed the point that yes, I'm a bit hypo-unaware while asleep, but when awake I'm fine. Fortunately it's the doctor who signs the forms...)

 

[Alison54321]

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

Not all CCGs are using the testing 8 times a day criteria, some are being really difficult, and as @helensaramay says, some of them are saying you have to have had 2 hospital DKA admissions, and maybe a couple of other equally hard to achieve criteria. It really is a joke.

 

[kev-w]

I've just watched the video @db89 linked, another MP needs to go back and correct her, in England 75% are following (roughly following) the RMOC guidelines now, but a good few have added bits to make it even harder which she doesn't mention, nor the difference between flash ones and constant ones and the prescription criteria for both.

I'm lucky, I've got one on prescription, testing over 8 x a day and starting to lose some hypo awareness, I've a friend who's had it longer than me, also losing his awareness but only testing 6 x a day and doesn't qualify, same consultant, same GP practice, same diabetes hospital clinic, only difference is I ba**ached both the clinic, GP and CCG, and the local opposition MP too, with a slot on the local radio which snowballed somewhat, but that shouldn't qualify me for one alone when another with the same illness can't get one.

 

[hh1]

@Knikki, hope you're feeling better after your CBA day.
@helensaramay the rules governing presribing Libre seem to be set by each CCG according to what they feel is appropriate. This is a link to Somerset CCG's 13 criteria which have to be met before you can be prescribed Libre:
www.somersetccg.nhs.uk/EasySiteWeb/GatewayLink.aspx?alId=6529
So if you lived here you'd qualify immediately on a1c grounds, but if like me you needed it to get your a1c down to that level, no help, self-fund. It's a total nonsense that CCGs can make these life-changing decisions willy-nilly with b***er all justification. I'd be far happier if they just said 'we can't afford it' instead of creating these ludicrous inequalities. I agree with all the comments about Theresa May's appalling attempt to avoid the question, but it feels as if half the hcps people deal with, the CCGs, and all politicians have no idea what it's like to manage T1 when you're just an ordinary person without endless cash.
Rant over, feel (a bit) better now

 

[becca59]

@karen8967 am lucky enough to have had it funded for a year by a family member. It has been brilliant, but not without incident. I succumbed to the dreaded itchy rash. Am at present spraying Cavillon underneath successfully. Starting January it will be back to blood testing only.
As I said earlier it has been classed as a red drug in Leeds and can only be prescribed by the hospital (am there tomorrow actually!) Last year my consultant told me that the grand total of 8 people had been given it.
As I said earlier, pigs will fly before I get it. Let’s face it I am one of those (like others on here) who monitor well, carb count accurately, exercise regularly and work my socks off to keep in range. The postcode lottery is outrageous. Taking children out of the equation, who I believe should absolutely get it, it should be every type 1 who wants it, or no one. It doesn’t sit well that no matter that we all pay into the system it doesn’t necessarily mean you are eligible.

 

[becca59]

You can’t just SAY you test 8+ times a day, you need to prove it by showing your meter. And if you try hypo unawareness as a reason, you risk losing your driving licence. Same with the “hypo requiring outside help” reason. It’s maddenning.

Yes, I didn’t express myself properly. I meant that if 8 times a day was the only criteria you could soon get your act together and rack up 8 blood tests a day. Especially if you drive.

 

[karen8967]

You can’t just SAY you test 8+ times a day, you need to prove it by showing your meter. And if you try hypo unawareness as a reason, you risk losing your driving licence. Same with the “hypo requiring outside help” reason. It’s maddenning.

I must of just been lucky mel as consultant just said i met the criteria never took fingerprick meter with me just my own libre meter which at the time read low with some scans although i wasnt.

 

[karen8967]

@karen8967 am lucky enough to have had it funded for a year by a family member. It has been brilliant, but not without incident. I succumbed to the dreaded itchy rash. Am at present spraying Cavillon underneath successfully. Starting January it will be back to blood testing only.
As I said earlier it has been classed as a red drug in Leeds and can only be prescribed by the hospital (am there tomorrow actually!) Last year my consultant told me that the grand total of 8 people had been given it.
As I said earlier, pigs will fly before I get it. Let’s face it I am one of those (like others on here) who monitor well, carb count accurately, exercise regularly and work my socks off to keep in range. The postcode lottery is outrageous. Taking children out of the equation, who I believe should absolutely get it, it should be every type 1 who wants it, or no one. It doesn’t sit well that no matter that we all pay into the system it doesn’t necessarily mean you are eligible.

Couldnt agree more becca

 

[db89]

Yes, I didn’t express myself properly. I meant that if 8 times a day was the only criteria you could soon get your act together and rack up 8 blood tests a day. Especially if you drive.

This was one of the things I mentioned (with meter to prove) at my last appointment. I was prescribed 4 sensors one time once I signed up to attend the next DAFNE course.

My only issue with this is that driving is one of the reasons my strip usage is reasonably high and that isn't going to be reduced by using Libre (yet - I know it's under discussion but these things have a tendency to move at the pace of sloths). The strips it has reduced were my post meal tests.

 

[kev-w]

Aw I've just taken my youngest to the gym for an induction aw and I've got to say she got a comprehensive run down on most of the things, I clean the instructors windows as far as it goes, selfish reasons but she isn't roaming whilst staying with me and I've not swum yet this week timing gym sessions round her school hours and work so tomorrow and Friday I can hit the pool at 3, have her meet me there at 4 then go to the gym with her.
Practical parenting volume 3

Edit And I had my flu jab today, something I never miss.... Ever.

 

[karen8967]

Not all CCGs are using the testing 8 times a day criteria, some are being really difficult, and as @helensaramay says, some of them are saying you have to have had 2 hospital DKA admissions, and maybe a couple of other equally hard to achieve criteria. It really is a joke.

Wow i must have been extremely lucky some of the criteria you mention is ridiculous just more excuses

 

[CranberryIce]

1 of 2 parent teacher evening/meeting done. #exhausted. ‍

 

[karen8967]

Goodnight everyone sleep well