Extraordinary Suggestion

Status
Not open for further replies.
S

SteveG4

Member
Relationship to Diabetes
Type 1
Had a very brief review with my diabetes team today; from the rather superficial exchange all seems to be OK. The parting gesture though was extraordinary. It may just be me having had Type 1 for 44 years (anniversary about now), but a suggestion was put forward that I should come into the Diabetes Centre and look at the revolutionary technology available to treat this now when I have no hope of getting any of it on the NHS because I don't meet the NICE criterion! I feel like a caged, starving animal having food presented to me on the outside! Not the first time this has been suggested; the staff never seem to put themselves in my shoes! Been on MDI therapy since 1977.
 
Last edited:
SteveG4 said:
but a suggestion was put forward that I should come into the Diabetes Centre and look at the revolutionary technology available to treat this now when I have no hope of getting any of it on the NHS
Click to expand...
Why do you feel that you have no hope of getting access to any of the technology and did they actually say you have no hope of it?
I wonder if they are actually looking to help you and if you showed an interest they would find ways of making you fit the criteria, if you don't already, but criteria are changing as more technology is becoming available, so this might be their subtle way of assessing if you are interested. Many long time diabetics will be happy to stick with what they are used to I should imagine, so offering to show you it enables them to assess if you might be a suitable candidate for the funds.

What sort of technology are we talking about? Libre or pumps or both? There may be a free trial of the Libre and that might be a way of getting your foot in the door for getting it prescribed but they are actively increasing the number of people who are prescribed it because of the obvious benefit.

I wonder if they are opening the cage door and you just haven't realized because you are so used to being in the cage. I had a horse like that once. I kept him in a paddock which was divided up with an electric fence. The day I took the fence down, he would not step over the line where it had been even though there was lovely green grass on the other side.
 
rebrascora said:
Why do you feel that you have no hope of getting access to any of the technology and did they actually say you have no hope of it?
I wonder if they are actually looking to help you and if you showed an interest they would find ways of making you fit the criteria, if you don't already, but criteria are changing as more technology is becoming available, so this might be their subtle way of assessing if you are interested. Many long time diabetics will be happy to stick with what they are used to I should imagine, so offering to show you it enables them to assess if you might be a suitable candidate for the funds.

What sort of technology are we talking about? Libre or pumps or both? There may be a free trial of the Libre and that might be a way of getting your foot in the door for getting it prescribed but they are actively increasing the number of people who are prescribed it because of the obvious benefit.

I wonder if they are opening the cage door and you just haven't realized because you are so used to being in the cage. I had a horse like that once. I kept him in a paddock which was divided up with an electric fence. The day I took the fence down, he would not step over the line where it had been even though there was lovely green grass on the other side.
Click to expand...

I hope you're right. A great reply. That has cheered me up. I am unusual in the fact that I'm not frightened of trying anything new. I think I've sorted T1D now and largely kept it in its box. Its all about quality of life for me now and not adding at the rate I have been to my total of over 80,000 injections that I've clocked up. I have a Libre and that's great, but it has only served to wet my appetite for a pump and ultimately a closed loop system.
 
SteveG4 said:
I have a Libre and that's great, but it has only served to wet my appetite for a pump and ultimately a closed loop system.
Click to expand...
Ooh closed loop, that's ambitious, but why not aim for the stars but be prepared to accept the moon!
I think there is some leeway for the consultant to "stretch" the criteria and my gut feeling is that they are more interested in using their funding to help people who are interested and want to help themselves. So if you already know a bit about the subject and ask pertinent questions and generally show that you have done some background research and indicate how it might benefit you and improve your control, you are more likely to be successful. You also need to keep trying if you get rejected the first time, but showing an interest and talking with them has to be the first step towards your goal.

Do you know which pumps they offer and do you have one in mind that you think you would prefer and why?
 
I guess maybe they just want to dangle stuff you can't have in front of you, but it feels a bit more likely they think there's something they could probably do for you. Seems like a waste of time for everyone otherwise.
 
rebrascora said:
Ooh closed loop, that's ambitious, but why not aim for the stars but be prepared to accept the moon!
I think there is some leeway for the consultant to "stretch" the criteria and my gut feeling is that they are more interested in using their funding to help people who are interested and want to help themselves. So if you already know a bit about the subject and ask pertinent questions and generally show that you have done some background research and indicate how it might benefit you and improve your control, you are more likely to be successful. You also need to keep trying if you get rejected the first time, but showing an interest and talking with them has to be the first step towards your goal.

Do you know which pumps they offer and do you have one in mind that you think you would prefer and why?
Click to expand...
I appreciate that a closed loop is ambitious but I'm working on the assumption that if I get the hardware, i.e. pump and CGM (next version of Libre will have this capability), then all I need is the software algorithm in the middle.
 
The difficulty might be getting a pump which will link to the Libre 3. Your CCG may not offer a pump that does and currently I don't think any do, but there is talk of I believe Omnipod, developing something that willlink to multiple CGMs, and of course the L3 being available here in the UK, which is likely another couple of years away, but no harm in starting the process now so you have a foot on the ladder. That said, I know absolutely nothing about technology, so I could be talking through my hat! Just reiterating what I think I have read on the forum.
Just to give you some context, my consultant has mentioned a pump a couple of times to me but at the moment I am quite happy with my Libre and MDI and I am managing my levels fine that way, so not interested. This is why I do think that they use these appointments to sound the water and assess interest.
 
Stayed in place called Handforth few months back, down road was group of garages selling high end cars, Rolls Royce Ferrari to name few, had good look at them thru showroom windows knowing that could never afford one, same principle with diabetes tech, might not be eligible but no harm in looking is there.
 
Sounds to me as if they are opening the door to tech for you, @SteveG4
I don’t qualify for a pump according to a strict interpretation of the NICE guidelines but they are guidelines not rules and my diabetes team were willing to stretch them 6 years ago.
I am not closed loop although interested. In my opinion, we should go through the steps of MDI, pump and then closed loop. The reason for this is that technology fails no we need to be familiar with doing things “the old way” so we can revert when under stress. So, I would not want to go Closed Loop until I had mastered ”open looping” (using a pump and CGM and manually suspending basal when I see levels falling).
Regarding using Libre as a CGM, are you aware that you can use Libre 1 as a CGM with an add on (Miaomiao or Bubble) and you can use Libre 2 as a CGM without any add Ona. You just need a bit of techy nouse and willingness to go off-piste with unofficial apps. I use Libre 2 and xDrip+ on my Android phone.
 
SteveG4 said:
I appreciate that a closed loop is ambitious but I'm working on the assumption that if I get the hardware, i.e. pump and CGM (next version of Libre will have this capability), then all I need is the software algorithm in the middle.
Click to expand...

It’s not ambitious if you have a Libre or CGM and some knowledge. My pump (the DANA RS) can be looped (although I don’t loop with it) and uses APS as a free DIY system as well as having an official system which costs money.

If you qualified for a pump, you could then explore what would work in a loop. If you have the time, you could go and look at the tech because even if you can’t get anything yet, it will inform you for the future and help you formulate a plan for looping.
 
nonethewiser said:
Stayed in place called Handforth few months back, down road was group of garages selling high end cars, Rolls Royce Ferrari to name few, had good look at them thru showroom windows knowing that could never afford one, same principle with diabetes tech, might not be eligible but no harm in looking is there.
Click to expand...
Thanks for the sentiment but I'm not sure I can relate to your analogy; I look upon this as a 'quality of life' rather than 'lifestyle' a issue
 
I agree with the point from @nonethewiser that it is always worth going to talk about something that is not yet available. This may enable the people in charge to link you with sources of funding as they become available. For the last few months, on a temporary basis, I have received funding for closed loop. A couple of years before, a nurse and the consultant at the hospital had said "This is a new idea. You might find it helpful."
 
helli said:
Sounds to me as if they are opening the door to tech for you, @SteveG4
I don’t qualify for a pump according to a strict interpretation of the NICE guidelines but they are guidelines not rules and my diabetes team were willing to stretch them 6 years ago.
I am not closed loop although interested. In my opinion, we should go through the steps of MDI, pump and then closed loop. The reason for this is that technology fails no we need to be familiar with doing things “the old way” so we can revert when under stress. So, I would not want to go Closed Loop until I had mastered ”open looping” (using a pump and CGM and manually suspending basal when I see levels falling).
Regarding using Libre as a CGM, are you aware that you can use Libre 1 as a CGM with an add on (Miaomiao or Bubble) and you can use Libre 2 as a CGM without any add Ona. You just need a bit of techy nouse and willingness to go off-piste with unofficial apps. I use Libre 2 and xDrip+ on my Android phone.
Click to expand...
Hi Helli,
I have a libra 2 and an iPhone- do you know any iPhone apps that will enable me to use it as a cgm instead of scanning all the time? thanks
 
Andywidd said:
Hi Helli,
I have a libra 2 and an iPhone- do you know any iPhone apps that will enable me to use it as a cgm instead of scanning all the time? thanks
Click to expand...
I believe there is an iPhone equivalent called xDripiOS.
As it os an unofficial app, it is not available from the Apple Store. It can be downloaded from GitHub
 
How are your hypo warning signs holding up after 44 years @SteveG4 ?

It’s not uncommon to have perfectly functional, but occasionally slightly flaky warning signs (eg you don’t always spot every 3.8 especially if you are only drifting down slowly, but would certainly know if you were getting down to the mid-low 3s). Or it may be that your signs are nicely early, but are a bit subtle off and on.

Sometimes this can lead to precautionary behaviours (eg running slightly high for driving or exercise) and to you being worried about hypos happening unexpectedly, and ‘looking out for them’ most of the time.

This level of thinking and behaviour around hypos is interpreted by many clinics as meeting the main NICE criteria for a pump (the alternative criteria being a higher HbA1c)
 
....... and as they always say - don't knock it until you've tried it. I'm not by nature a technophobe but am fully aware I'm getting to be one, simply because these things which others use at the drop of a hat are passing me by at ever increasing speed. (I have enough difficulty 'swiping' across a mobile phone screen to answer it when it rings, finger slides across the surface and doesn't move the icon to do that. Ditto sliding it down to get to the bit where you turn the wifi on.)
 
@SteveG4 8 years ago I was bemoaning the fact that I'd never get a pump as I didn't fit the criteria. @trophywench said to me "If you don't ask you will never get one!" So I asked, after some quizzing by the pump nurse she agreed that I would benefit and I have been a very happy bunny on a pump for 8 years next month. So go... look at the choices and ASK!
 
Yes @SteveG4 it was the best thing I have done going onto pump. It was a suggestion from my DN that started it all and I've been on it for 2 + years now and that along with my L2 sensor have worked wonders for me. My pump is tubeless and works wirelessly too so very little to attach to myself.
If you get the chance go look and take up any offer you get.
 
Status
Not open for further replies.
Back
Top