The pump call came!

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olliej96

olliej96

Well-Known Member
Relationship to Diabetes
Type 1
Been a while since I posted last.

I had a phonecall with a nurse around 2 weeks ago now, which she asked some general questions and discussed different pumps with me (and if I was very tech savvy or not) also talked about peer support which was nice.

Fast forward another couple of days, and I have an email from one of the diabetic clinic administrators, asking me to fill out a 7 day form all about the insulin I'm on and my rates, as well as asking me to choose a pump!

I have also noticed on my repeat prescription that I'm now getting Vials of insulin instead of the cartridges for pens, and underneath the vials on the app I use it says 'for pump use'

I'm now assuming I sit tight until a call comes through with training etc etc. I'm so damn excited!
 
Excellent progress @olliej96

Which pump have you chosen.

As @nonethewiser says it is important that you always have your pens as a back up for your basal. For your bolus, you either need a pen or syringes to draw up bolus from vial as a back up.

I look forward to hearing more about how you get on with the transition from pens. It takes a bit of time to get things sorted to match your needs, and then to get the confidence to do your own checks and adjustments. Lots of experience to tap into on here. Just ask.
 
SB2015 said:
Excellent progress @olliej96

Which pump have you chosen.

As @nonethewiser says it is important that you always have your pens as a back up for your basal. For your bolus, you either need a pen or syringes to draw up bolus from vial as a back up.

I look forward to hearing more about how you get on with the transition from pens. It takes a bit of time to get things sorted to match your needs, and then to get the confidence to do your own checks and adjustments. Lots of experience to tap into on here. Just ask.
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For sure ill keep you posted on my experiences. I have chosen the T-Slim X2, after months or research on different types of pumps, this one specifically caught my eye with what it's capable of doing, also as I'll have it for 4 years, I wanted to future proof
 
olliej96 said:
Will do, thanks for the heads up!
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Meant to also add, make sure you keep up to date cartridges in fridge for both basal & bolus.

Had to use bolus pen when I've hit dodgy infusion site or on rare occasion where pod has failed.
 
yes brillant news.
my first time on pump way back in 2007 ACC ----CHEK pumps 3 of plus the slow train one
but now i ask the question we have to provide a smart phone a sim card poss a computer plus broadband

i do hope that the cost to NHS has come down a lot because when i started acc chef have the dedicate HAND SET and all inf stored on a small unit
so now it cost us more to fund good luck vic
 
Congratulations-- so exciting!

As I think I've mentioned before, I really really want a pump. (Of course 'closed loop' or 'hybrid closed loop' or 'sensor-augmented' or whatever you want to call it, where sensor and pump 'talk to' each other and the system's as automated as possible; having looked it up, it seems the T-Slim X2 fits.)

I'd be very interested and grateful for your view as to why they approved you for a pump?

Having looked back at your older posts: your consultant didn't see any need for you to get one, but she was willing to refer you to the pump team ... Do you think it was just that the pump team were happy to approve pumps for anybody who wanted one? Or did you get the feeling that there were particular criteria which, if you hadn't met them, the pump team would have said no?

Not that I'm, ahem, looking for coaching on 'the right answers'! ... Just want to get a better idea of what my chances are; even though I know things can vary a lot from CCG to CCG, real examples are helpful. Thanks, and hope the training is fun!
 
VICTOR HILL said:
but now i ask the question we have to provide a smart phone a sim card poss a computer plus broadband
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Which pump are you getting?
I can control my pump via my phone (and do) but I am also given a PDM.
And the information is uploaded to the cloud via wifi so I don't need a computer or sim card. Access to broadband is required but this is available for free from places such as libraries.
 
Spathiphyllum said:
Congratulations-- so exciting!

As I think I've mentioned before, I really really want a pump. (Of course 'closed loop' or 'hybrid closed loop' or 'sensor-augmented' or whatever you want to call it, where sensor and pump 'talk to' each other and the system's as automated as possible; having looked it up, it seems the T-Slim X2 fits.)

I'd be very interested and grateful for your view as to why they approved you for a pump?

Having looked back at your older posts: your consultant didn't see any need for you to get one, but she was willing to refer you to the pump team ... Do you think it was just that the pump team were happy to approve pumps for anybody who wanted one? Or did you get the feeling that there were particular criteria which, if you hadn't met them, the pump team would have said no?

Not that I'm, ahem, looking for coaching on 'the right answers'! ... Just want to get a better idea of what my chances are; even though I know things can vary a lot from CCG to CCG, real examples are helpful. Thanks, and hope the training is fun!
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No problem at all!

For a while I've been talking with pumpers and ive been interested in their stories, and the impact switching has had on their lives, which ultimately led to me wanting to make the switch as I'd never had the opportunity in my 14/15 years diagnosis.

My consultant didn't see any real reason, as she thinks perhaps control wise I won't see a huge impact. I explained that I'm having to Inject often per day to keep my sugar levels in control which has resulted in major MDI burnout and the stress that follows. I think though one of the points that I feel may have helped in the approval is that I've completed a carb counting course which I believe is a big factor in a yay or a nay.

I wish you all the best on your journey to getting one!
 
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olliej96 said:
No problem at all!

For a while I've been talking with pumpers and ive been interested in their stories, and the impact switching has had on their lives, which ultimately led to me wanting to make the switch as I'd never had the opportunity in my 14/15 years diagnosis.

My consultant didn't see any real reason, as she thinks perhaps control wise I won't see a huge impact. I explained that I'm having to Inject often per day to keep my sugar levels in control which has resulted in major MDI burnout and the stress that follows. I think though one of the points that I feel may have helped in the approval is that I've completed a carb counting course which I believe is a big factor in a yay or a nay.

I wish you all the best on your journey to getting one!
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That is very helpful, thank you! And yes, I've already done part of the carb-counting course and will be doing the rest soon ... But now I realise I should ask: Do you live in Scotland? ...

I live in England and have been worried about the fact that the NICE guidelines recommend that pumps should only be given to people who fail to achieve adequate glycaemic control with MDI; they don't take any account of what it costs some of us to achieve good control with MDI. (https://www.nice.org.uk/guidance/ta151/chapter/1-Guidance ) The NICE guidelines cover England, Wales, and, as far as I can tell, Northern Ireland.

In Scotland, the Scottish equivalent of NICE has recommended that NHS Scotland should give looped pumps to people with T1D if they "continue to have suboptimal glycaemic control" on MDI or non-looped pump or if they "experience diabetes-related distress ... that adversely affects quality of life ... and which is likely to be improved by moving to a closed loop system." (https://shtg.scot/media/2155/shtg-r...ancreas-for-type-i-diabetes-mellitus-t1dm.pdf )

That is obviously right; it's ridiculous that NICE doesn't make the same recommendation! Penny-wise and pound-foolish, when you think of the long-term costs of burnout and other forms of diabetes-related distress.

So-- either you live in Scotland, or your local pump-controllers have the good sense and medical ethics to depart from the NICE guidelines where appropriate. (The preamble to the NICE guidelines does say, "The application of the recommendations in this guidance is at the discretion of health professionals ... [these recommendations] do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient".)

I'm hoping you live in England, Wales, or NI. ; )
 
Spathiphyllum said:
That is very helpful, thank you! And yes, I've already done part of the carb-counting course and will be doing the rest soon ... But now I realise I should ask: Do you live in Scotland? ...

I live in England and have been worried about the fact that the NICE guidelines recommend that pumps should only be given to people who fail to achieve adequate glycaemic control with MDI; they don't take any account of what it costs some of us to achieve good control with MDI. (https://www.nice.org.uk/guidance/ta151/chapter/1-Guidance ) The NICE guidelines cover England, Wales, and, as far as I can tell, Northern Ireland.

In Scotland, the Scottish equivalent of NICE has recommended that NHS Scotland should give looped pumps to people with T1D if they "continue to have suboptimal glycaemic control" on MDI or non-looped pump or if they "experience diabetes-related distress ... that adversely affects quality of life ... and which is likely to be improved by moving to a closed loop system." (https://shtg.scot/media/2155/shtg-r...ancreas-for-type-i-diabetes-mellitus-t1dm.pdf )

That is obviously right; it's ridiculous that NICE doesn't make the same recommendation! Penny-wise and pound-foolish, when you think of the long-term costs of burnout and other forms of diabetes-related distress.

So-- either you live in Scotland, or your local pump-controllers have the good sense and medical ethics to depart from the NICE guidelines where appropriate. (The preamble to the NICE guidelines does say, "The application of the recommendations in this guidance is at the discretion of health professionals ... [these recommendations] do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient".)

I'm hoping you live in England, Wales, or NI. ; )
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Ahh good. How long left on the course have you got? I do think carb-counting was a major factor in my approval for a pump. I do live in England yes, specifically the south-east. Oh for sure it's definitely strange that we havent adopted the same recommendations as Scotland.

I think with the area I live in the support for diabetics is farely good and we've got some absolutely fantastic DSN's/consultants here which have helped hugely in the past when I've needed anything (working on getting the Dexcom One still). My MDI consultant is such a lovely lady, and it'll be a shame I won't get to see her for future pump appointments, but I know i'll be going into good hands.

If you're really trying to get access to a pump, I'd keep pushing. If you feel that it'd be beneficial to you and your diabetes management and you feel that a change is needed, I say absolutely don't stop trying.

How far into the process are you? have you mentioned it to your specialist yet?
 
Great news @olliej96

I’ve been very happy with the tSlim 🙂

Hope the start date comes through soon.

@Spathiphyllum - interestingly, the first NICE recommendation refers to hypoglycaemia, rather than overall glucose management as reflected in HbA1c.

The evidence reviewed in TA151 showed more significant reductions in exposure to hypoglycaemia than reductions in A1c (and this was before sensor-augmented pumps).

The wording is something along the lines of if a person finds that aiming for an on-target A1c leads to unpredictable hypos that occur randomly, cause worry, and affect quality of life.

On MDI that was exactly how I found things as my management improved. Thankfully I lost all my Severe Hypos, but MDI left me always juggling and the potential of hypos, and hypo avoidance strategies constantly on my mind. You don’t have to be having disabling hypoglycaemia to qualify, you just have to have the spectre of possible hypos constantly on your mind.

I can’t see how anyone on MDI would feel any different TBH, trying to keep within target range tight enough to get an A1c in the mid-6s!

A pro-pump consultant could be talked around I suspect.

Hope you manage to jump through sufficient hoops!
 
Ollie and Everyday, thanks very much!

I feel almost guilty about pressing for a pump (looped, of course) already, given that so many people grapple with MDI for decades-- and I was only diagnosed three and a half months ago!

But-- I suffer from a longstanding anxiety disorder. You may know the following, but I think not everyone does: Not all anxiety disorders can be cured, sometimes they can only be managed; and managing them can require a lot of work, because even minor everyday things-- in particular, even minor decisions-- can be very difficult and stressful.

Moreover, pre-T1D, the one thing I had no trouble with was food ... I like healthy food, I get a lot of exercise, I don't have any psychological problems with food, so that was one of the few aspects of life that was perfectly simple-- I could and did eat whatever I wanted whenever I wanted ...

So, if there were a malevolent deity who wanted to choose the worst possible disease to afflict me with, he'd choose T1D! ... I assimilated a lot of information very rapidly-- including from this forum! and e.g. doing the online BERTIE course before my team even mentioned carb counting-- and applied it; and my team got me a Libre 2 just 8 days after diagnosis. So I've already achieved quite good glycaemic control. But the psychological burden is enormous. Including but not limited to "the spectre of possible hypos", which looms especially large, I think, for those of us who live alone. And, with MDI, I'm pretty sure the psychological burden is not going to get much better with time; on the contrary, more like the Titanic heading for the iceberg.

I told my consultant and DSN straightaway, on the day I was diagnosed, about my anxiety disorder; and the last time I saw my consultant I had a little rant! Specifically about looped pumps and the NICE guidelines. He indicated that the guidelines are not always strictly applied, and that he would be happy to refer me to the pump team, but we needed to 'get all our ducks in a row' first. He arranged for me to do the carb-counting course asap-- I've already done the first part and will have the remainder soon-- and he said we'd discuss pumps again in the new year.

However, I did wonder whether he was just trying to placate me! So it's great to know that there is at least one real person, namely Ollie, who really has got a pump on grounds of psychological impact 'despite' good glycaemic control.

Now all I have to worry about is that the current dire political/economic circumstances might lead to a crackdown on pump funding ... But enough of that! And thanks again.
 
@Spathiphyllum A lot of what you have written above resonates with me. The long standing stress/anxiety/depression disorder particularly around decision making, living alone with diabetes and up until a couple of years ago, the fear/terror of hypos, particularly nocturnal ones. Interestingly what cured me of the fear was having a week of almost nightly hypos, despite adjusting my evening basal insulin.... right down to zero... this was during a period where I had really stepped up my exercise levels. Up until then I hadn't had any nocturnal hypos but not infrequent daytime ones and I think what reassured me was that my body woke me up, I dealt with them and carried on (with my sleep) in much the same way as I do through the day. I am now very aware that familiarity can breed contempt and of course I do my utmost to avoid hypos but it is such a relief not to live in fear of them anymore and to learn to trust my body..... to the point that I fully intend to disable the alarms on the Libre 2 when I have to upgrade at the end of this year, because having spent nights waking up every couple of hours to test or scan to make sure I wasn't hypo, I now really value my good night's sleep in the knowledge that my body will wake me if it need to.
This may not happen for you but I just wanted to say, that this was a real surprise and complete turn around for me and I actually feel more secure in trusting my own body than the technology of a pump. This happened not long after I finished my DAFNE course and before I actually got Libre which I was trying desperately to get prescribed at the time... a bit like you with the pump. For me managing these nocturnal hypos gave me confidence and my diabetes management has improved both literally in terms of levels but also emotionally since then. It was like a turning point I suppose and I no longer suffer anxiety with my diabetes now. It is certainly still frustrating at times, don't get me wrong. but the fear has melted away and I feel like I can deal with whatever it throws at me now.... and I have had a few challenges since then.

Even on a day like today when I am really struggling with panic attacks and I feel like I have metal straps around my ribs and my heart is beating 10 to the dozen, I just manage my diabetes as a background task and tonight when I have to figure out how much evening basal I am going to need, it may be a bit like pinning a tail on the donkey .... anywhere from 0-5.... I give it some thought pick a number depending upon how my daytime levels have been and how much exercise I have done today (bot all so far 🙄 which is part of the anxiety problem) and then usually adjust it by half a unit and jab it it. I make sure I am well prepared to deal with hypos through the night with JBs close to hand and reader under my pillow but otherwise I sleep soundly.

I really hope you can also reach this level of confidence but it only came with time and experience for me. Just wanted to offer a little hope in case your mission to get a pump takes time. Things can get better without one sometimes even if you very much doubt that they will. It certainly surprised me!
 
But the psychological burden is enormous.

@Spathiphyllum It took me around two years to really get used to Type 1. I still struggle, but I feel that after those two years things settled down a bit. However, Type 1 is a psychological burden and having a pump doesn’t make that go away. When everything’s going well, then the pump does make it easier, but it certainly doesn’t free you from the burden - because the burden is a lot more than the practical things. It’s emotional and it’s also involved with food, so is there each day.

If you have anxiety problems, then potentially a pump will just change those problems a bit - a bad site?; will the pump malfunction and ‘run away’ (inject too much insulin); is the basal rate wrong? why’s it making that whirring noise; occlusion alert; having to get up in the night to change the cannula, etc etc.

Pumps aren’t a magic answer. I say that because it’s very easy to think that they’ll solve the stress, but the stress is the condition itself, and until that’s cured we’ll have this burden.
 
Inka said:
Pumps aren’t a magic answer.
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I hope you won't mind my saying so, but, if you reflect on it: You are rather insulting my, and Ollie's, intelligence. One would have to be an idiot to think that pumps were "a magic answer"; I'm not an idiot, and I'm sure Ollie isn't either.

Looped pumps do "make it easier"; that is all we're asking for; and for some of us this can make a huge difference.
 
I think that @Inka is just pointing out that there are lots of issues with pumping that you almost certainly don't realise or have experience of until you start pumping and that those can bring their own set of anxieties. I remember when @SB2015 first started closed looping, bearing in mind she had already been pumping for a good few years, she could not cope with it making the decisions and wanted to intervene when it did and ended up going back to using it in manual mode for a while longer because it was just too much for her at that stage, much as I know she loves it now and I believe @Inka takes occasional pump breaks because it is far from perfect for her.
It is also important to have a good working experience of MDI for the possible occasions when pumps fail for some reason so that you are confident to inject under pressure initially until the problem is resolved.

I really don't think there was any intention to belittle anyone or offend.
 
That’s rude @Spathiphyllum I wasn’t insulting either of you, and had Liked Ollie’s post when he started the thread - my comment was to you. I’ve had Type 1 for 30 years and used a pump for almost 20 years - I was explaining to you so that you had a realistic view of pumps.

I also said “When everything’s going well, then the pump does make it easier”… so I’m not sure why you mentioned that. You’ve had diabetes 3 months or whatever it is. I offered my experience to help.

The burden you talk about is very real, and a pump won’t remove it. I had burnout a few years ago despite my pump. Even if I had a closed loop, the psychological burden never completely goes. You think you feel it now, but wait till you’ve had decades of Type 1 (hopefully you never will because there’ll be a cure, fingers crossed). It is exhausting.
 
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