Want to get a pump and CGM - how do I choose which one?

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ollie1234

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Type 1
Hello,

I'm really keen to get a pump... my control's not been great for quite a long time and I'm prepared to self-fund if necessary. I'm actually feeling really scared about my years of poor self-care and want to try and look after myself better while I still have the opportunity.

I've a few questions - first, how do I go about choosing a pump and CGM? What are the main differences between them, and what should I look for? Are some better and worse, or is it more about personal preference?

I'm currently using Humalog / insulin lispro and Lantus preloaded pens, do I need to look for a pump that works with lispro? (I realise I wouldn't use the long acting lantus on a pump).

Also I get the impression that getting funding from the NHS can take ages and lots of fighting - would you say this is accurate? I'm meeting my doctor next week and planning to go to the hospital diabetic clinic as soon as possible. If they won't fund everything, do you think they'd make any contribution to the costs or is it usually all or nothing?

Thanks,

Ollie
 
Hi Ollie, welcome to the forum 🙂 It's a bit of a postcode lottery from what I can gather, so a lot depends on whether your clinic/PCT is pro-pump or not. Then, of course you would need to meet the NICE guidelines in order to get it approved on the NHS and then there may be a long waiting list - usually only a limited number of pumps are approved per year. Also, from what I can gather, CGMs are unlikely to be funded on the NHS. It can be a very expensive business to self-fund and I believe you still need approval from a consultant before you can get one.

I'd suggest getting in touch with the people at INPUT http://www.input.me.uk/ - the site has links to other organisations if you are in Scotland, Wales or NI where the rules are different.

Good luck! Hopefully some of the pumpers will be able to give you more info 🙂
 
Hi Ollie. Welcome 🙂

As you say your control has been poor in the past, have you taken all the steps necessary to improve it ?🙂

I only ask because, from all accounts on here and elsewhere, pumping takes a lot more work to gain control than MDI and may not be the magic bullet it seems. Likewise CGM can be a deal of work to succeed and still requires a fair few finger pricks to check if it's working and to calibrate it each time you change sensors.

Rob
 
Hi Robster,

thanks for the warning. I find that question really difficult to answer; I've been testing about four times a day for the last few months, making adjustments to my insulin and doing my best to be mindful of what I eat, activities, insulin etc. My results are still not great though, I am between 5 and 12 most of the time with some highs and lows.

There are some things I find really hard to manage that I'm imagining a pump would help with, I'd really like to hear people's thoughts on these specific points. First, my preloaded pen has a 1 unit minimum dose. When my sugar level is around 10-14, one unit typically brings me down to a hypo. I understand that pumps allow smaller fractions which I think would help with this.

The other is that I often feel I'm blind to what my sugar levels are between meter readings. Say I am at 5 one day after breakfast and then 6 after lunch. The next day I can be at 5 after breakfast, eat and do the same things, then be 11 after lunch. I am trying to be conscious of what's affecting my sugar levels but sometimes I feel totally lost as to what the causes are and what I can do to improve things. I'm thinking the CGM would help me with both keeping tighter control and learning about the causes of my level changes.

Thanks for your time, I'd really appreciate some advice on this.

Ollie
 
HI again Ollie.

Typically, T1 members on here (myself included) test anything up to 8-10 times a day. I try to stick to 6 or 7 but sometimes need an inbetween reading.

If you continue withthe premeal tests, but then do +1 or 2 hour tests to determine what your and when your 'spikes' are, you can get a better idea about what foods to avoid or to have in combination with lower GI foods to spread the carb metabolism.

Have you been on a carb counting course (DAFNE, etc) ?

What sort of doses of insulin are you on ?

ANd how long have you been diagnosed ?

Rob
 
8-10! That's more than I expected.

I was diagnosed 20 years ago when I was 13 years old. I didn't learn much, had an awful time at the hospital... anyway. I did learn a little about carb counting but basically stuck to the same amounts of carbs and insulin for about 15 years.

More recently I've tried to get on to the DAFNE course but no luck - there isn't one in my area. I find my local diabetic team hard to approach and talk to. I would really like to do a DAFNE course... do you know if it's possible to self fund and travel to get on one?

For the last few years I've been adjusting my insulin a little and trying to learn how it affects me. I take 20 units of lantus at night, then use 4-6 units of lispro for breakfast, 5-7 for lunch and dinner. I vary a little depending on how much I eat.

From what I've said so far, is there anything you could recommend I do now to get better control? Perhaps a pump isn't the most appropriate thing but I'm feeling really scared at the moment and trying to do things better.

When do you do your tests? One before and after each meal, plus one before bed and in the morning? What doses of insulin are you using?

Ollie
 
Hey,

Have you tested your background dose lately................if this is out this makes dose adjustment for eating a bit more difficult.........

Welcome.........🙂
 
ollie1234 said:
8-10! That's more than I expected.

I was diagnosed 20 years ago when I was 13 years old. I didn't learn much, had an awful time at the hospital... anyway. I did learn a little about carb counting but basically stuck to the same amounts of carbs and insulin for about 15 years.

More recently I've tried to get on to the DAFNE course but no luck - there isn't one in my area. I find my local diabetic team hard to approach and talk to. I would really like to do a DAFNE course... do you know if it's possible to self fund and travel to get on one?

For the last few years I've been adjusting my insulin a little and trying to learn how it affects me. I take 20 units of lantus at night, then use 4-6 units of lispro for breakfast, 5-7 for lunch and dinner. I vary a little depending on how much I eat.

From what I've said so far, is there anything you could recommend I do now to get better control? Perhaps a pump isn't the most appropriate thing but I'm feeling really scared at the moment and trying to do things better.

When do you do your tests? One before and after each meal, plus one before bed and in the morning? What doses of insulin are you using?

Ollie
Click to expand...

Carb counting is essential, as well as confident dose adjustment to be considered for a pump..........or at least to use it successfully......

So that's good news really, you can learn these things and then give it a bash, you will be pleasantly surprised.................
 
Hi Novo,

how do I test my background dose? Are the night and morning test results the best way to calibrate it?
 
How to get a pump

Well Northener as already pointed you to inputs website here you will find the NCIE guidelines remeber that you don't have to fit every aspect of the criteria and your PCT can't decide what parts of the guidelines it will or will not use as part of it's assessment to see if you can be funded for your pump..

You don't have to be carb counting to be considered for a pump, but you will have to learn how to carb count to so easier to get it your head around carb counting before getting the pump though..

Pumps only use quick acting insulin for both basal (backgound) and bolus, which actually makes things a lot easier as you can program your pumps basal to suit your needs through the day..

As to CGM's there isn't any NICE guidelines for these, and they are only funded in rare cases most have to self fund this part..

If you are looking at self funding the insulin pump, a pump with set you back ?3000+ The Medtronic Veo and Animas Vibe have a CGM but these come as an add on extra, so often you can do a deal if the PCT is funding the pump part..

The running cost for consumables for a pump is around ?100 a month, and if you are funding CGM's the sensors cost between ?40-?80 if I remember rightly, and some last more days than others... So not cheap at all.

Whether you are funded or you Self fund, you will need to have a prescription and support of your consultant/diabetic team, so take a look at input, then speak with your DSN/Consultant about getting a pump without saying you self-fund...
 
Hi Ollie,

Carb counting is definitely a very positive step in the right direction and I'm willing to bet you will see an improvement in control with accurate carb counting (or as accurate as any of us can be!). If you can't get onto DAFNE, ask your team what they can provide - ie do they have a similar course? Or can they refer you to the dietician? There are books on the market (such as Carbs & Cals which provides pictures of portions of food to help you judge carb values) that can help when out and about. Obviously, looking on packets makes things really easy - most packaged food will tell you the nutritional value of it.

Have you spoken to your team about getting a pump? Whether you choose to self fund or not, you have to have the approval of your consultant, as pumps are prescription-only bits of kit. It all boils down to your consultant: they need to write a letter to your PCT requesting funding. As pumps are appraised by NICE, your PCT is required by law to fund the pump (and they won't part fund, ie you buy the pump and they pay for consumables - I tried that and was told no PCT will do this, it is all or nothing). So it is worth speaking to your team, explaining why you feel a pump would benefit you, and ask them to apply for funding for you.

CGM unfortunately isn't covered by NICE at the moment, so there is no obligation for the PCT to fund these and it is rare to find an adult with full time funded CGM. That's not to say there aren't people who have funding - just that it is virtually impossible.

As Ellie says, if you did want to look at self funding the CGM side of things, Animas and Medtronic pumps are both compatible with CGM (Animas is integrated with Dexcom, Medtronic has its own sensors - Sof or Enlite).

Where in the country are you based? Getting funding can be a postcode lottery - but there are a lot of hospitals that are very supportive 🙂
 
Hi Ollie

Only snippet I can add is if possible keep a food & insulin diary. This will also help when seeing a dsn.

Make note of everything that goes in carb wise including any corrections (jelly baby currency 1 JB = 5g carb and a mini can coke cola = 15g), also write down all doses of insulin including again corrections.

Do you know the 15min hypo rule ? One thing I found with Rob was the over treating of a hypo causing the re bound high later :(
I know it's very difficult especially if alone when hypoing but if possible stick to the 15 min rule.

And test test and test best way for finding out ratios & what your food does for you if you don't have access to a cgm.


Best of luck

Take Care

Sarah 🙂

Ps Did I mention writing every thing down :confused::D
 
Have you ever read the books using insulin and think like a pancreas, Ollie?
If not, worth the investment. 🙂
 
As well as "Type 1 diabetes for children, adolescents & young adults" by Ragnar Hanas. Full of loads of info you'll never have even dreamt of 🙂

I was also diagnosed at 13, muddled through for 30 or so years and only found out a lot of the realities of modern diabetes management about 18 months ago, especially since joining this forum.

My HbA1c went from 8.x down to 6.3 in that time.

I'm still on the same humalog & Lantus I was but have split the lantus to cover the 24 hours more effectively and learnt how to properly carb count and dose adjust. But it does need those 6+ tests per day. And writing everything down.:D

Rob
 
Thank you all so much!

I've ordered those books from Amazon, looking forward to receiving them. I'm hungry for knowledge 🙂

I don't know the 15 minute rule, but after searching I read "take 15g carbs then re-test in 15 minutes". That sounds like a sensible way to deal with hypos.
I'm often rational and measured when I treat them but sometimes I find them so frightening I just eat lots of sugary snacks until I feel safe again.

This is just the kind of information I need; it's much more reassuring to have some structure than to be playing it by ear all the time.

I called the DAFNE head office today... it's not running in my area, same as last time I checked. They suggested I could campaign the local team for it but really I don't feel like fighting, I just want some support. Apparently I can't buy a place on a course but I wish I could. Is there some kind of diabetes education weekend I could book a place on? I don't want to wait or petition the NHS to get some help.

On writing things down, is there an app or website that would help with that? It'd be nice to have a gadget to make it a bit less laborious!
 
We can't get DAFNE here either Ollie :( And have had to learn our own method (which works for Rob)

We use Diabetes diary app on the ipod touch they also have an insulin calculator app that once you know your ratios will be a great help 🙂

By dividing carbs in at each meal by insulin given you will be able to get your ratios. But beware they vary as to the time of day and also with exercise.

Try not to do too much at one go, small steps and changes reap rewards long term.

Sarah 🙂
 
RSVP and Rob

Glan Clwyd hospital in Bodelwyddan do Dafne 😉
 
Bournemoth Daibetes and Endocrinology Centre (BDEC) - they who produced the online course - also do a Hands-On course called BERTIE (also an acronym like DAFNE but dont be asking me what it actually stands for!) and not so long ago, they were talking of arranging it so that those like yourself who live in a diabetic wasteland could pay and go on the course. Worth a phone-call - quite a lot more to the 'personal' course than can be contained in an on-line one.

They aslo train people from other Health Authorities to run a version of the same course. The course materials must be approved by their assessors and the training methods are also checked by them, to ensure nothing is lost in the re-telling. Each hosp has to invent its own name for the course, thus it is that my lot (Coventry) deliver the CARBS 4 1 course at Rugby Hosp, with the 2 DSNs and the dietitian that were trained to do it leading the course. Certainly worth a phone call to Bournemouth.

The key to getting it right is two fold generally - basal insulin needs and getting that right, and getting your bolus insulin to carbs ratio cracked. But then lets add some variables because it ain't that easy! This may be different at different times of day and/or with different foods. The basal will be different on the days you take exercise, if the weather is hot/cold, if you are ill/under stress or have hormonal changes. So if you are a girl - that's 'for some time' every month.

I don't think the on-line course teaches much of this in any depth. It concentrates on carb counting - but unless your basal is right, in the first place, the carb-counting won't be right either ......

I might make it sound over complicated, it isn't but you do land up understanding your body a lot more than when you started.

Ring Bournemouth anyway. If you can get on a hands-on course, go for it. Do the on-line course anyway and see what you get from that. Ask questions here as you go. Buy any of those 3 books - Ragnar Hanas, Using Insulin by John Walsh and Think Like A Pancreas by Gary Scheiner - and get reading, Mrs. And keep asking questions. There will be stacks!

And I'm like Robster. OK I knew some, but by the time my friends on-line had taught me a lot more I began to wonder how I'd even survived that long! (not here though, this forum was an infant when I got stuck in and I needed help right then LOL) And after the course I was convinced - and still am - that it should be compulsory for anyone diagnosed T1 - once they've come out the other side of their honeymoon period anyway. The 'rule' here is, after the first 12 months. (or the first 35 years in my case!)

And you will have to do a lot more testing than you currently imagine including setting the alarm to wake you and test during the night, whilst you are checking basals. But you do it in blocks and not every night or day - even whilst you are first getting it cracked.

But it's worth it, cos it makes so much difference!
 
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I called the DAFNE head office today... it's not running in my area, same as last time I checked. They suggested I could campaign the local team for it but really I don't feel like fighting, I just want some support. Apparently I can't buy a place on a course but I wish I could. Is there some kind of diabetes education weekend I could book a place on? I don't want to wait or petition the NHS to get some help.
Click to expand...

Hi Ollie,
ask your GP or diabetes team to refer you to a dietician, this is your right to have this apt. Ask that you are shown how to carb count and adjust your doses.
There may not be a DAFNE course in your area but there could be another course with a dif name. So ask at your clinic. If they not helpful go to your GP and ask for a referal to another clinic.
 
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