Libre on NHS

[NoKindOfSusie]

Yeah, great story, bit of publicity from a well known name is all to the good, as well as encouraging newly dx'd reading about a guy who carried on playing professional football after dx.

Never heard of him.

This is stupid and you will think I am an idiot, but since I am now basically reduced to being a robot designed to hold a cellphone near my own arm, it occurs to me that it HAS to be possible to make this automatic... and I'm not just talking about some crazy kludged up freebie version made out of toilet roll tubes, I mean something proper.

 

[kev-w]

Never heard of him.

This is stupid and you will think I am an idiot, but since I am now basically reduced to being a robot designed to hold a cellphone near my own arm, it occurs to me that it HAS to be possible to make this automatic... and I'm not just talking about some crazy kludged up freebie version made out of toilet roll tubes, I mean something proper.

But Scott-C has posted a few times about the 'blu-con' device, £98 to turn Libre into a CGM sending the data automatically to your phone every few minutes, with the data on the phone screen and alarms to tell you if you're going up or down quickly.

If I get to keep my prescription after the 6 month trial I'm on I'll be getting one.

 

[Scott-C]

Never heard of him.

There's a world outside of London.

 

[Scott-C]

it occurs to me that it HAS to be possible to make this automatic

If you stop regularly insulting your medical team and telling them they are idiots, they might be a bit more onside about getting you on the waiting list for a pump, and then you can explore the various looping options. Some of the guys who've built tiny computers and put them inside tic-tac boxes are actually doing a better job than the major companies.

 

[NoKindOfSusie]

If you stop regularly insulting your medical team and telling them they are idiots

Oh, is that what I'm doing.

And no, I do not want a pump, I feel like enough of a freak as it is.

 

[Scott-C]

Oh, is that what I'm doing.

And no, I do not want a pump, I feel like enough of a freak as it is.

You've certainly given that impression in past posts, can't be ***** looking them up, but I'm pretty sure you've referred to them talking down to you as if you were a child, failing to understand you can divide numbers, all of which suggests your relationship with them isn't a-ok. But I could be wrong.

Have a look at the blucon. I recall you showed some interest in it on a previous thread. www.ambrosiasys.com Pair it with xDrip+, you're getting hypo alerts and a whole stack of ways to take some of the uncertainties out of this.

I'm not sure why I wasted my time even typing that. You'll probably come back with a random drive-by dismissing it as nonsense.

 

[NoKindOfSusie]

You've certainly given that impression in past posts, can't be ***** looking them up, but I'm pretty sure you've referred to them talking down to you as if you were a child, failing to understand you can divide numbers, all of which suggests your relationship with them isn't a-ok. But I could be wrong.

Yes, they have totally done all those things. I have not insulted them nor told them they are idiots. Two of the medical people I have met here absolutely are idiots, but telling them that right to their faces didn't seem like a very good idea. They take me a lot more seriously when I dress up like a lawyer in a skirt and heels for some reason.

Yes, I do want blucon and xdrip, motivation and money is a factor.

Last I checked openAPS wasn't compatible with many/any modern widgets. If anything I would be most interested in omnipod as it is the least freakish one I have seen but even then, ew.

 

[Scott-C]

Yes, I do want blucon and xdrip, motivation and money is a factor.

xdrip+ is free, blucon is £96, £8 post office handling charge, reclaimable £18 import VAT. You're self employed so see if you can write it off as a business expense, or tell your parents you want some money for your next birthday, or don't live in London,
because it sucks money out of people. I know you hate being T1, I don't like it much either, but it is what it is, we both have to live with it and cgm makes it easier.

If anything I would be most interested in omnipod as it is the least freakish one I have seen but even then, ew.

I quite liked the look of it too, but my area doesn't offer it. I can see the attraction of pumps - cgm tells me so much, I've been often overtempted to make micro-adjustments, which would be easier with a pump, but it's still manageable on mdi. Sometimes with cgm, it's tempting to overreact to every slight line inflection. It takes a bit of time to learn how to read a cgm trace properly and not over-react.

If you don't mind me saying so, there's been a lot of very experienced posters on here giving you some advanced tips on T1 management, the sort of deep experience which you won't get from non-T1 hcps, yet you flip them off as if they are talking rubbish.

There's a lot of uncertainty in T1, you're still finding your way in this, none of us pretend to know the answers for sure, but we make judgment calls on the basis of available evidence, and we're trying to share that collective knowledge with you.

Many of your posts have been needlessly insulting to people who are genuinely trying to help, so maybe just calm your jets for a while?

 

[EllieM]

They take me a lot more seriously when I dress up like a lawyer in a skirt and heels for some reason.

I've always found that diabetic specialists take me much more seriously if I point out early in the process that I am numerate - a maths degree seems to do the trick. (But when I moved to NZ my DN told me that half her patients weren't numerate, so that is a little scary, and explains a lot as to why doctors don't help patients get more in control. )

 

[NoKindOfSusie]

xdrip+ is free, blucon is £96, £8 post office handling charge, reclaimable £18 import VAT. You're self employed so see if you can write it off as a business expense, or tell your parents you want some money for your next birthday, or don't live in London,
because it sucks money out of people. I know you hate being T1, I don't like it much either, but it is what it is, we both have to live with it and cgm makes it easier.



I quite liked the look of it too, but my area doesn't offer it. I can see the attraction of pumps - cgm tells me so much, I've been often overtempted to make micro-adjustments, which would be easier with a pump, but it's still manageable on mdi. Sometimes with cgm, it's tempting to overreact to every slight line inflection. It takes a bit of time to learn how to read a cgm trace properly and not over-react.

If you don't mind me saying so, there's been a lot of very experienced posters on here giving you some advanced tips on T1 management, the sort of deep experience which you won't get from non-T1 hcps, yet you flip them off as if they are talking rubbish.

There's a lot of uncertainty in T1, you're still finding your way in this, none of us pretend to know the answers for sure, but we make judgment calls on the basis of available evidence, and we're trying to share that collective knowledge with you.

Many of your posts have been needlessly insulting to people who are genuinely trying to help, so maybe just calm your jets for a while?

If I have been a bit direct with anyone it is the fixed-grin brigade who say things like "oh I'm better for it." Yes, people have said that, it is just sickening and I am not going to sit here and be patted on the head and told it's fine and what am I worrying about. People do very much pretend they have all the answers and that is really unhelpful. Even the medical people do it when it is very obvious that nobody can possibly have a complete understanding of how all this works.

 

[Mike d]

Isn't it about time you enunciated just what you do want?

 

[tim2000s]

People do very much pretend they have all the answers and that is really unhelpful. Even the medical people do it when it is very obvious that nobody can possibly have a complete understanding of how all this works.

The majority of experienced people will put up their hands and say "No we don't have all the answers, but here is what we have learned and maybe it can help you". If you don't want help, just say "I don't want help". This isn't head patting and saying "It will all be okay". None of us can possibly know that, but if you were to take a step back and look at your interaction with the world in general, you'd realise that there are a lot worse things than being diagnosed with T1 in the UK. Being diagnosed T1 in Africa for example...Yes your life has changed, but you have every opportunity to do something about it.

Yes, this is a support forum, but people tire quickly of trying to be supportive of someone who doesn't really want support and bats it away irascibly at every opportunity. As @Mike D asked. What do you want?

 

[NoKindOfSusie]

The majority of experienced people will put up their hands and say "No we don't have all the answers, but here is what we have learned and maybe it can help you".

well maybe, unfortunately that doesn't help with the 500 billion other people who for some reason don't wear badges saying "by the way don't listen to me." Usually we have medical degrees to sort out the people who know what they're doing but that doesn't really seem to work with this.

 

[urbanracer]

I was told directly over the phone by an Abbott person that they are now prioritising pharmacies. I suspect this is a condition of supplying the NHS. I also suspect that in the not too distant future, sales to joe public will be curtailed because it costs less to manage a few large accounts than it does to manage thousands of customers.

If you can actually get anyone at your local Superdrug to answer the phone (I can't !) they're cheaper there anyway at a mere £35. Asda, Boots and Lloyds are selling at around £45. All claim to be able to get them within 2 days of placing the order - I shall be testing this for the first time on Tuesday.

Yes - replying to my own post's now, is that the internet equivalent to talking to yourself?

Went to Superdrug yesterday (Tuesday 8th May) and have just had a call (Wednesday 9th May) to tell me that the 2 sensors I ordered have been delivered and are awaiting collection! Pretty slick service by any stretch.

Whereas the 2 sensors that I ordered directly from Abbott on 24th April are currently showing as 'Awaiting Payment' and no indication of when the order will be fulfilled. Looks like the end of on-line ordering for me, especially at only £35 each.

Meanwhile my GP's receptionist has also called me back today regarding getting the sensors on prescription and told me that the CCG has not approved it in this area. When I informed the receptionist that I had only enquired because a pharmacist told me that she'd started to see prescriptions for sensors coming through, the receptionist told me that she was only repeating what the diabetes nurse had told her. (There's a rat in me kitchen.)

 

[smc4761]

As I stated in my post from 3 days ago I was going to write to my MSP, and fair do's she has responded already. I have attached the response she received from Lanarkshire Health Board in February. Lots of words from their reply but not making a great deal of sense. She is going to write to them again asking for update. Basically they want a consistent approach across Scotland, mm so how come Lothian healthboard have been so proactive and foresited and have approved this for their area

 

[Copernicus]

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.

 

[dbr10]

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.

Good luck.

 

[kev-w]

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.

Good luck x2!

 

[Engineer88]

I'm tempted to give Libre a bash with the bluecon. If I bought the blue thingy and it didn't work out for me accuracy wise does anyone know if there is a second hand market?


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

 

[novorapidboi26]

As I stated in my post from 3 days ago I was going to write to my MSP, and fair do's she has responded already. I have attached the response she received from Lanarkshire Health Board in February. Lots of words from their reply but not making a great deal of sense. She is going to write to them again asking for update. Basically they want a consistent approach across Scotland, mm so how come Lothian healthboard have been so proactive and foresited and have approved this for their area

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

Is that right?