Insulin Pumps

Messages
1
Hi Everyone,

I have had T1 coming up to 5 years, and im really not coping with it. I have seriously had enough of the daily chore in order to stay healthy.
I am taking an incrediable amount of insulin at the moment, depending on what im eating i take between 10 - 20 unit of fast acting each time i eat. and 60 units of long acting before bed along with another 10 units in the morning. I also take 4 metforming throughout the day and 2 blood pressure tablets. (Sounding rediculas, i know).
I am that fed with with all this medication and control i need to have it reduces me to tears when i think of it (which im sure you can guess is everytime i do ANYTHING).
I have seen a few things on facebook posted by diabetes UK about pumps, so this morning after my diabetes appointment i had last week (was told i need to have more control) i thought i would read about insulin pumps and other diabetes meds.

I have found an insulin pump that actually seems like a dream ;) its the Paradigm Veo- when i say dream i mean oh my god this cant be real!!
I didnt know that pumps and do insulin as well as glocose monitoring, i can not explain how much it would mean to me to have this treatment, it even suspends insluin when bs is below a programmed point!
My worry is i dont think i would get it on the NHS in these economic times.
My main reason for posting on here was to see if anyone else had problems getting an insulin pump and how you persuded your GP or whoever to let you have one.

At the moment i feel so depressed and it seems i just seen a light at the end of this dark tunnel :)
 

SophiaW

Well-Known Member
Messages
1,015
Type of diabetes
Type 1
Treatment type
Pump
Insulin pumps are great at getting around some problems because rather than taking an injection of long acting insulin your basal insulin with a pump is drip fed minute by minute. If you need more or less basal insulin at certain times of the day the insulin pump can be programmed to adjust the amount delivered at those times, whereas an injection doesn't give you that flexibility. An insulin pump is simply a different way of delivering insulin, this method of delivering insulin can solve many problems people face but it's not a solve-all solution for everyone. If you are insulin resistant I don't think the pump is going to change that very much, although many people find they need a little less insulin when delivered through the pump than with injections. I think the continuous glucose monitor (the bit that does the blood glucose monitoring) is very difficult to get NHS funding for. A pump, although it has many benefits, will not get you away from the daily grind of managing your diabetes. It is equal if not more work involved but for many people the better control gained from pumping is worth the extra effort put in.
 

noblehead

Guru
Retired Moderator
Messages
23,618
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Disrespectful people
Stuart,

Reading what you've posted above and looking at your Hba1c in your profile then I'd say your a prime candidate for a pump, I would press your diabetes team to look into this for you and see if funding is available.

Good luck!
 

ellecook79

Active Member
Messages
30
Stuart,

I am just starting on the paradign veo having had my funding approved.

You need to meet the NICE guidelines for a pump which you can read up on online.

One thing you should bear in mind is that the NHS will only fund the pump - they will not fund the CGM element which is what you seemed to be interested in. This is because (I think) the CGM tests bodily fluid other than blood and is about 30 minutes behind the fingerprick blood test.

The result is that whilst the pump will deliver your insluin, there is just as much testing if not more than on MDI.

Do you carb count at the moment? You need to be able to show the hospital that you do this as a first step to being considered for the pump.

I don't want to in any way put a downer on this for you - I am in a similar position - I have been diabetic for 6 years and just cannot get good enough control. It is very concerning and frustrating. If you follow the instructions, you expect to get the indicated result and when your body does something different it can be very frustrating indeed. I just don't want you to expect the pump to be a fix-all - you have to programme it and it will only ever be as good as you are...

Good luck and let me know if you have any questions...

Elle x
 

iHs

Well-Known Member
Messages
4,595
Hi

First of all, do you carb count and use an insulin to carb ratio to figure out how much bolus insulin you need to inject for each of your main meals? If you dont know much about using carb ratios then before you go down the pump route, ask your DSN to explain ratios to you. If you dont get very good advice then look at the BDEC website and also download DUK's guide to carb counting. Bg control can be made much better using ratios and testing bg levels about 6 times a day and adjusting the ratios so that bg levels stay within target guidelines.

With regards to the Veo pump, yes it does appear to look wonderful on the website but all pumps work in a similar way so the Veo is probably not really any better than any of the other pumps on the UK market. Cellnovo pump is something else as is the Omnipod so look at those.

To get yourself on to an insulin pump, this is done through a diabetes consultant at a hospital so if you haven't got one, ask your GP to refer you. A consultant will want to know how you are going about injecting insulin and what ratios you are using. They will give advice which you should try to follow and review you within 3 months, then if things are no better, they then will look at the NICE guidelines to see if you meet any of the criteria. If you do, then an application can then be made to your PCT for them to supply the funding for a pump. Insulin pumps are expensive and the consumables are also so that is why people get pumps through PCT funding.

Look at the INPUT me website which gives good info about pumps and also you can read the NICE guidelines. Pumps are not easy peasy. They require a fair amount of bg testing to be done every day and then from doing the tests, people are then able to know when to adjust the basal rate or the insulin to carb ratio. Can take a while to figure it all out but most people are happier because of the better control and obviously less injections.
 

jopar

Well-Known Member
Messages
2,222
Pumps are only has good as the user!

Pumps and their various wizards only do what we tell them to! The bolus wizards will only calculate our bolus dose based on information we've told it, such as insulin sensitivity, insulin duration period, percentage of adjustment required for exercise, then our carb-insulin ratio at that point of time!

So dependant where control issues are then this will determine what a pump can do, if the user is aware what is causing their problems, such as insulin sensitivity which means that under or over dosing is pretty easy feat to do, perhaps they know that their basal profile is so over the place, that 2 injections of background insulin isn't going to stabilise it to a working profile or perhaps because of your lifestyle being active etc, and being limited to injecting insulin causes all sorts of problems, because you inject to do one thing, but then need to do something else! The pump is likely to make a big improvement in control...

Yes, some to find that they reduce their insulin needs with a pump, but this is more based on the ability to deliver the exact amount of insulin for your needs, biggest saving being if any is normally on the basal insulin!

But if the issues is based on lack of knowledge, and inability to carb count, or actually take any actions to manage your condition then the pump will become a very expensive usual piece of kit!

As to clinic's providing pumps, well to be honest you gets and who doesn't if you have to jump through hoops or not, will purely be based on what your clinic policy is... It's a pretty inconsistent state of affairs even with NICE guidelines... Best place to find out what your clinic is like is to contact www.input.me.uk

As to GCM's

There is no NICE guidelines or any push from any of the organisations such as DUK/INPUT to get the ball rolling on them, because it's felt that it's more important to improve insulin pump access enforcing PCT's to provide CGM's will only reduce the access to insulin pumps!

But are they as magical as they seem?

Not really, you still have to take regular BG's just to calibrate and maintain it's calibrations throughout the day (how many times will be dependant on make) they work on a lag time, and if they sound a warning these have to be doubled checked to ensure that information it's given is correct..

Yes, if you've got hypo unawareness they handy gadgets for warning that BG's are dropping, they also pretty good an giving patterns of controls, but with the latter it won't tell you which is basal, quick or a combination of both insulin that's effecting control...

Again they are a piece of kit which only ever going to be as good as the user!

I suggest, yep ask your clinic about a insulin pump so you find out the lay of the land, but also look at your control know, try to work out whether your control problems are based in lacking knowledge of knowledge of 'how to control' as there's many things that can been done with learning carb counting, investing in a book that tells you about MDI therapy, and how to work what you need to know out etc..
 

Cheryl

Well-Known Member
Messages
180
Pumps are not an easy option! I resisted having one for a long time and am now settled on it, but it takes effort. It has been a long & difficult journey for me to get where I am & I've still a way to go to get where I want to be (and where the doctors want me) with the pump, but it has brought my hba1c down significantly though it hasn't got rid of my many mild hypos. Some people settle into it quickly others, like me, it takes a long time.

So don't think of it as an easy option. You have to test more, (even with CGM at least 4 times a day, without CGM 6-10 times) you have to skip loads of meals at first to get your basals right & you have to learn how different foods, activities & hormones affect you. You must carb count properly. However, I do like the flexibility of popping an extra bolus if I decide to have a snack, eating out is easier & so is sport, once I got to grips with how it affected me.

If you meet NICE criteria, you should be given one, though this is sometimes easier said than done. If you can find a hospital clinic that specialises in pumps in your area, the journey will be much easier.

There are a few people with NHS funding for CGM (continuous glucose monitoring) but it is very difficult to get. There are only 2 at my clinic and I was told that they wouldn't even ask on my behalf.

However, I use CGM a couple of times a months (6 days each time) which I pay for myself and I do find it useful....but.... it is not always terribly accurate, it depends a lot in where you site the sensor & if not in just the right place can give a lot of low readings when you aren't low. I do find it useful, but in order to assess my control, make changes & see what certain meals do to me etc. I don't think that I'd use it all the time even if I did have funding.

It is expensive. The transmitter & 5 sensors as a start up pack costs about £750, then sensors are £275 for 5. They have to be used within six months of purchase or they "expire" & the transmitter apparently has to be replaced every 2-3 years.

I was lucky that my DSN managed to persuade the pump company to throw in the start up pack for free, but I'm still spending at least £100 a month on CGM.

Good luck.