Extraordinary Suggestion

[trophywench]

I tell you what hasn't changed about me @Pattidevans - I still hate and loathe filling cartridges - and I very very quickly realised I absolutely couldn't have coped with the Tslim one.

 

[PattiEvans]

But you have to fill them on your current pump trophy.

 

[trophywench]

Yes I do and I still hate it! - and to add insult to injury I discovered last week there's a Dana (Ypsomed) tubed pump that can take the prefilled cartridges ...... aaaargghh.

 

[PattiEvans]

FWIW you do get used to it. Hard to believe how scared of doing it I was at first. Were your clinic offering the Dana?

 

[trophywench]

FWIW you do get used to it. Hard to believe how scared of doing it I was at first. Were your clinic offering the Dana?

Err, so then clearly 49 years isn't quite long enough?

No they weren't - but had I known this time last year I'd have made a fuss to try and get one. I shouldn't have been so lazy so serves me right I expect.

 

[SteveG4]

I would be very pleased to try this technology. However, having made enquiries to my clinical provider, I was today in receipt of this from my 'newly acquired' consultant:

“ Dear …

I understand that you contacted my secretary recently to enquire as to where you were with regards to pump therapy. I can see from your Libre View data when I looked at it recently, that your time spent in the hypoglycaemic range is only … with … of the readings between 3.9 and 10. This shows you are able to achieve good glycaemic control with minimal hypoglycaemia. I do not doubt that this is not without considerable effort on your part.

However, as I explained on behalf of the … team in my letter of June this year, the NHS cannot fund a pump for you, as you do not meet the criteria. And further in response to the email correspondence we had in August, I have to make sure that we use NHS resources wisely and so, even if you wanted to self fund a pump, we need to focus the limited resources on those that would stand to benefit the most in terms of utilising limited nursing dietectic time.

I’m sorry that this is not what you wanted, however, if you still wish to pursue pump therapy, then may I suggest that you ask your GP to refer you to a different service perhaps nearer to home.

Yours sincerely,

…..

Clinical Lead for Diabetes”

So that's it. AT the moment I'm in bits over this. This is having spent 41 years being cared for by this provider and all I want is to be brought out of the dark ages and into the 21st century. I will be doing no 'knee jerk' on this. This result needs careful contemplation. In the interim, advice welcome....

 

[Robin]

You do have to wonder why they invited you to go and look at all the tech stuff, in that case. Was it all pumps, though, or was there more stuff, like CGMs or next generation Libres, that were on display?
I think on this forum, we may get a skewed idea of how many people there are who get offered pumps, because it’s my feeling that people using tech will gravitate to forums to discuss it with others, and learn more about how to get the best out of them. There are a lot of us who don’t get offered them. I certainly wouldn’t qualify. Like you, I work hard to keep in range on MDI, and I do find it a bit galling sometimes that I've automatically ruled myself out of a pump by doing that. I did manage to get the Libre, with a lot of nagging and a long wait, and making sure I constructed my case for fitting the criteria well. But at least that was something I could self-fund, at least part time, while I was waiting.

 

[Bruce Stephens]

I think on this forum, we may get a skewed idea of how many people there are who get offered pumps,

I think most of us (who are T1) are MDI. Which matches the best information I could quickly find, National Diabetes Insulin Pump Audit.

Overall, 17.7% who attended a specialist unit in England. Younger people more likely, and women twice as likely as men. And use decreases with increased social deprivation.

 

[Robin]

I think most of us (who are T1) are MDI. Which matches the best information I could quickly find, National Diabetes Insulin Pump Audit.

Overall, 17.7% who attended a specialist unit in England. Younger people more likely, and women twice as likely as men. And use decreases with increased social deprivation.

Interesting that the percentage for Wales, where they count ALL Type 1s, is only 5%. I certainly wouldn’t have been counted at all in the England survey, as I wasn’t being seen in a specialist unit at the time, along with all the other Type 1s who’d been discharged back to their GPs.

 

[Bruce Stephens]

I certainly wouldn’t have been counted at all in the England survey, as I wasn’t being seen in a specialist unit at the time, along with all the other Type 1s who’d been discharged back to their GPs.

Me neither, come to think of it. Maybe those on a pump are almost always under the care of a specialist unit? (They know how many people have T1 overall, after all, so they just need to count the number using a pump.)

 

[SteveG4]

You do have to wonder why they invited you to go and look at all the tech stuff, in that case. Was it all pumps, though, or was there more stuff, like CGMs or next generation Libres, that were on display?
I think on this forum, we may get a skewed idea of how many people there are who get offered pumps, because it’s my feeling that people using tech will gravitate to forums to discuss it with others, and learn more about how to get the best out of them. There are a lot of us who don’t get offered them. I certainly wouldn’t qualify. Like you, I work hard to keep in range on MDI, and I do find it a bit galling sometimes that I've automatically ruled myself out of a pump by doing that. I did manage to get the Libre, with a lot of nagging and a long wait, and making sure I constructed my case for fitting the criteria well. But at least that was something I could self-fund, at least part time, while I was waiting.

Possibly the person I originally spoke to hadn't got the full context in connection with me. I find this more than a bit galling, its becoming a quality of life issue for me. I can't even self fund a pump. Punished by working hard to prevent complications and saving the NHS a considerable sum as a result. Its wearing me down.

 

[mark king]

Just to add to the points about pump qualification.
My DSN informed me I would have to qualify for a pump but because I'd had a couple of episodes of going unexpectedly low and not much warning she would put me forward.
I was successful in getting one but she did add that they would review my usage regularly and If I became very well controlled may revert me back to pens.
That is not something I would want and I don't know anybody that has been removed from a pump programme so I'm hopeful I'm on it for good but they do control my prescriptions.

 

[mark king]

Just doing a review of this post I see in my post above I say "they do control my prescriptions" well no longer.
All my diabetic medication is now on my REPEAT screen at my Drs so I reorder as and when required.

 

[trophywench]

The reason you're well within the TIR on Libre is obviously SOLELY because you are so UTTERLY TERRIFIED of hypos you spend AN AWFUL LOT of your time ensuring that you never go there. In fact this constant terror is ruining your quality of life, isn't it? I mean - I've only read this thread again just now, I know nowt about you otherwise and if it's obvious to me how much you are constantly struggling with this burden - I'm most surprised it is not obvious to any decent diabetes clinic.

Why do you imagine the consultant suggested you get your D care elsewhere - is there an alternative such clinic and if so why do you prefer the unhelpful one? Does the one you go to come under a different CCG to the other one?