Hi, I'm a type 1 diabetic on MDI. I'm just wondering at what point you got an insulin pump? My control so far is pretty good (only had type 1 for a year, so still in 'honeymoon' phase). The problem is that I work in a children's centre and I can't have needles on me, so I can't pre bolus, which means lots of highs. Although I have just been switched to Fiasp a couple of days ago to try and combat this. It is still early days for me, but at some point in the future I think I would like a pump. Are these only given to people who have lots of difficulty with control and high HbA1c, or will all type ones ultimately be offered a pump? Thankyou for any advice!
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At what point did you get a pump?
- Thread starter Lily.D
- Start date
Bruce Stephens
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- Type 1
Probably the latter (at least in England), but that's a recent change. It very much depends on your team, I think. Some seem to find it easier to offer pumps than others. I'm not sure why. Presumably some differences in regions over how much money is allocated to diabetes care.
I've never qualified for one. Women are apparently twice as likely to be offered a pump than men. (Those hormones, probably, in addition to pregnancy where good control is so much harder and so much more critical.)
Partha Kar has predicted that the guidelines for HCL (hybrid closed loop) will be widened to include all of us in 2026. (That's for England, where he's in charge of the rollout.) The expectation is that when NICE reviews the evidence it'll decide that HCL for all makes sense.
This is something that is evolving.
There are guidelines from NICE regarding who should get funding for a pump but this is only guidelines and is interpreted differently by different diabetes clinics. I think this is down to how much money hey have and how they chose to spend it. For example, some may chose to provide HCL to those most in need whereas others may chose to offer just pumps to more people.
Until recently, my clinic chose to offer pumps to more people by offering no choice so they only needed training, negotiations, etc. with one manufacturer.
There is never any harm in asking for more information at your next diabetes review with the diabetes clinic.
However, I advocate "mastering" MDI before moving on to pumping. There are a couple of reasons for this:
- pumps can fail and you need to be able to revert to MDI at short notice. So you need some "MDI muscle memory". This is very rare but if it happens it will never be at a convenient time and you need to be able to cope.
- pumping is the next level of diabetes management. There is a lot more to learn so it is a very good idea to be pretty good at carb counting and understand sick day rules, etc. It is not uncommon for a pre-requisite of pumps to be attendance at a DAFNE type course. This ensures you know these basics, prove that you are willing to invest the effort into getting the most out of a pump; and the person taking the course can unofficially assess you.
As for me, I was on MDI for 12 years. My HBA1c was always pretty good. But I am active which lead to quite a few hypos. So the biggest benefit for me to have a pump is to be able to suspend my basal which reduces hypos when exercising.
Sorry, that is a long winded way of saying
"Ask you clinic and be willing to make your case."
There are guidelines from NICE regarding who should get funding for a pump but this is only guidelines and is interpreted differently by different diabetes clinics. I think this is down to how much money hey have and how they chose to spend it. For example, some may chose to provide HCL to those most in need whereas others may chose to offer just pumps to more people.
Until recently, my clinic chose to offer pumps to more people by offering no choice so they only needed training, negotiations, etc. with one manufacturer.
There is never any harm in asking for more information at your next diabetes review with the diabetes clinic.
However, I advocate "mastering" MDI before moving on to pumping. There are a couple of reasons for this:
- pumps can fail and you need to be able to revert to MDI at short notice. So you need some "MDI muscle memory". This is very rare but if it happens it will never be at a convenient time and you need to be able to cope.
- pumping is the next level of diabetes management. There is a lot more to learn so it is a very good idea to be pretty good at carb counting and understand sick day rules, etc. It is not uncommon for a pre-requisite of pumps to be attendance at a DAFNE type course. This ensures you know these basics, prove that you are willing to invest the effort into getting the most out of a pump; and the person taking the course can unofficially assess you.
As for me, I was on MDI for 12 years. My HBA1c was always pretty good. But I am active which lead to quite a few hypos. So the biggest benefit for me to have a pump is to be able to suspend my basal which reduces hypos when exercising.
Sorry, that is a long winded way of saying
"Ask you clinic and be willing to make your case."
Robin
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- Type 1
- Pronouns
- She/Her
I've never been offered one, as I don’t fit the criteria (control is too good on MDI), I've had Type 1 for 17 years.. I've never asked for one either, as I don’t think I’d particularly benefit from one, when there are others who have a better claim.
Bruce Stephens
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- Relationship to Diabetes
- Type 1
That seems like a reasonable argument, and one you should certainly make with your team.
Sally71
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- Relationship to Diabetes
- Parent
My daughter got one only 8 days after diagnosis, only because there was a trial starting comparing pumps with MDI in newly-diagnosed children and you had to begin it within 10 days of diagnosis. Which was pretty tough in terms of brain overload! We didn’t get any sort of course (they don’t offer DAFNE to children or their parents anyway), we just got half an hour with a dietician to make sure we understood what carbohydrates are, and a free copy of the carbs and cals book, and maybe half a day’s training with the DSN and pump rep and then we had to get on with it. Although the hospital were great and saw us a lot for the first month or two and we could get in touch any time if we had any problems, so it’s not as if we were completely unsupported! We’d find injections pretty crude by comparison, thankfully so far have never had a pump failure but hopefully would be able to cope for a few days if necessary.
nonethewiser
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- Type 1
Was offered one on 2 occasions before taking plunge, hba1c wasn't bad at 7.2 but was injecting about 6 times a day & sites were getting well worn out.
Switching was best decision I've made diabetes wise, a lot less hassle than mdi.
Switching was best decision I've made diabetes wise, a lot less hassle than mdi.
Inka
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- Type 1
I got a pump 10 years after diagnosis as I fulfilled the criteria. I then had a couple of hours or so pump training and that was it - but not in a bad way, in a good way. I already knew all about carb counting and had a lot of experience with my diabetes.
My granddaughter is 5 and she is getting the pump on Monday she was diagnosed 3 weeks ago so it’s all pretty scary at the moment x
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Welcome to the forum @Lily.D
The relevant guidance is NICE TA151, which as a ‘technology appraisal’ means that funding for treatment must be provided for people whose clinic/consultant says they meet the criteria.
The first qualifying factor is hypoglycaemia happening at unpredictable times such that a person worries about hypos happening despite their best efforts, and perhaps has ‘workarounds’ in place. NICE call this ‘disabling hypoglycaemia’ with a negative effect on quality of life - but it doesn’t have to be severe hypos (needing 3rd party help) it can must be the emotional drain of the constant worry about unpredictable lows.
Alternatively, the other criteria is an HbA1c above 69mmol/mol (8.5%) after intensive training such as DAFNE, analogue insulins, etc.
Hope you have constructive conversations of you decide to ask about pump therapy.
The relevant guidance is NICE TA151, which as a ‘technology appraisal’ means that funding for treatment must be provided for people whose clinic/consultant says they meet the criteria.
The first qualifying factor is hypoglycaemia happening at unpredictable times such that a person worries about hypos happening despite their best efforts, and perhaps has ‘workarounds’ in place. NICE call this ‘disabling hypoglycaemia’ with a negative effect on quality of life - but it doesn’t have to be severe hypos (needing 3rd party help) it can must be the emotional drain of the constant worry about unpredictable lows.
Alternatively, the other criteria is an HbA1c above 69mmol/mol (8.5%) after intensive training such as DAFNE, analogue insulins, etc.
Hope you have constructive conversations of you decide to ask about pump therapy.
SB2015
Well-Known Member
- Relationship to Diabetes
- Type 1
I got my pump after about 4 years. I was refused the first time asked them why then gathered data to address each of their concerns and got put on the list 6 months later. There was then a wait to have a group of us trained at the same time.
My main reason for wanting a pump was to reduce night time hypos and to make exercise a lot easier. It takes quite a bit of work at the start, and then adapting the settings to match your individual needs, and requires monitoring what is going on for changes needed.
I think your point about being in a children’s setting and not having needles is a very good one. Here we had to have done DAFNE before we could have a pump and it is worth ensuring that you are very familiar with the basics first.
Children are often put onto pumps earlier than adults but we are in a time of change and there is a lot of discussion about widening the availability of Hybrid Closed Loop systems where the pump ‘talks’ to the sensor and makes adjustments in the background.
My main reason for wanting a pump was to reduce night time hypos and to make exercise a lot easier. It takes quite a bit of work at the start, and then adapting the settings to match your individual needs, and requires monitoring what is going on for changes needed.
I think your point about being in a children’s setting and not having needles is a very good one. Here we had to have done DAFNE before we could have a pump and it is worth ensuring that you are very familiar with the basics first.
Children are often put onto pumps earlier than adults but we are in a time of change and there is a lot of discussion about widening the availability of Hybrid Closed Loop systems where the pump ‘talks’ to the sensor and makes adjustments in the background.
My granddaughter aged 5 just got the pump on Monday had 1/2 hour training the pump has to be changed very 3 days and the sensor very 10 it’s a lot to remember how to change it
mashedupmatt
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- Relationship to Diabetes
- Type 1
I'd like to try a pump as my weekend routine involves a lot of exercise (and food!) so is very unpredictable and is difficult to manage - my HbA1c is well outside the guidelines as my control (I'm also in honeymoon period, which is definitely ending) is too good apparently according to NICE (52) - it is frustrating - but I'm sure it will change soon...
Flower
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- Relationship to Diabetes
- Type 1
Do ask at your next clinic @Lily.D bring the subject of a pump up for discussion if it doesn’t come up. Make a list of things/instances where you’re struggling on MDI and see where it goes.
Often discussion in a clinic are based around results/medications reviewing cgm results on a computer screen etc and before you know it you’ve got a blood test form for next time & are on the way to the door having forgotten to ask about things.
My main reason for getting a pump was disabling hypos in the night requiring 3rd party help after I lost hypo awareness. That was 26 years back and the development in tech over that time is amazing.
Often discussion in a clinic are based around results/medications reviewing cgm results on a computer screen etc and before you know it you’ve got a blood test form for next time & are on the way to the door having forgotten to ask about things.
My main reason for getting a pump was disabling hypos in the night requiring 3rd party help after I lost hypo awareness. That was 26 years back and the development in tech over that time is amazing.