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all diabetics have the right to try an insulin pump?

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kimberleyk45

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i'm almost 21, have been diabetic for almost 4 years. i feel that ALL diabetics should have the right to try using an insulin pump, not just those people who dont take care of themselves or their diabetes. i asked my diabetes nurse about this & apparently people with bad control are priority! this statement angered me because in most cases, not all, poor control is self inflicted. either through poor management & diet or due to lifestyle & not taking care of yourself. why have i to miss out on a life changing opportunity just because i am doing well? surely its our right to try anything that can give us a better quality of life?
 
I agree. I was lucky but I'm not in the UK. It was 'quality of life, in giving me the ability to reduce basal frequently and thus avoid many hypos that were the reasons I was offered a pump, I already had a very low Hb A1c .
The way they do it here is to rent the pump for 3-6months, if the person or the doctors feel that it isn't working for them nothing is lost and they can go back on MDI. If it seems to be working well a pump is bought for them.

Actually I don't think that the NHS would necessarily be overwhelmed with demand, I've met several people here who were offered a pump trial but didn't want one for various reasons.

Also from what I read the most recent NICE criteria is interpreted differently in different areas. with doctors in some places applying the second criteria (below) quite freely. It does mention quality of life and disabling hypos are no longer defined as those that need third party assistance. Certainly, I get the impression that more people are getting pumps.

'attempts to achieve target haemoglobin A1c (HbA1c) levels with multiple daily injections (MDIs) result in the person experiencing disabling hypoglycaemia. For the purpose of this guidance, disabling hypoglycaemia is defined as the repeated and unpredictable occurrence of hypoglycaemia that results in persistent anxiety about recurrence and is associated with a significant adverse effect on quality of life'
http://www.nice.org.uk/nicemedia/pdf/TA151Guidance.pdf
 
apparently in my area of scotland the funds given for pumps has been halfed & as they cost over £1000 they choose the patients who are allocated 1 very closely, this will be even worse now funds have been cut. My diabetic nurse told me 'if you want one so badly, buy one yourself', i think saying that to someone is ridiculous
 
I totally agree that everybody should have acess to a pump. It has made a huge difference to my quality of life. I was one of those ' badly controlled' diabetics on four injections. Despite counting my carbohydrates with precision, and ajusting my insulin accordingly,I could not achive good control no matter how hard I tried and my hba1c was continually at 10. After only one month it has dropped to 6.9. I don't agree that pumps are for lazy people as I have to work hard to maintain good bg levels and there is still some work to go. I am doing nothing different on the pump than I was before. The only difference is that all my hard work is paying off. So it it's not a lazy option. It seems to me that the systems for obtaining a pump in this country is very hit or miss. I feel lucky to have been given the chance to have one and I hope at some point that you get one.
 
i dont think pumps are for lazy people either. i'm on 5 injections daily & would love the opportunity to at least try 1 & experience what its like. but apparently if you're doing well & working hard to maintain hba1c then your not entitled to one. doing well & working hard should be rewarded not punished. thankyou for replying, i'm glad theres someone out there who feels the same. but unfortunately the only way i'll get a pump is to buy one myself & i dont have £1000 :(
 
I have done quite a bit of research on insulin pumps and the criteria you have to meet according to the NICE guidelines and they say for adults you either have so many hypo's or fear of hypo's that it affects the quality of your life or you struggle to get a HBA1C under 8.5%, but i have also seen that this isn't often the case, people with insulin resistance or have fears of needles are often given a pump,

i personally struggle to control my diabetes, this isn't due to poor control as i do look after myself, im currently taking up to 60 units of novorapid with everymeal, and to do this i inject 3 times to deliver this dose as i find my insulin stings in large doses and my HBA1C is 12.1% two months ago.but i also experience hypo's frequently thankfully never have fallen unconscious or had to have emergency medical treatment.

with all this i asked my consultant about a pump. He said he was perfectly happy for me to go onto a pump after i have been on the DAFNE course and shown i can carb count after this and show i record my blood test results at least four times i day, (i currently test at least 10 times a day as i find this neccesary to control how much insulin i take and my sugar is extremley erratic)

So i guess im sort of proof it's not always the really bad ones that get the pumps and i think the pump should be a reward to people with type 1 diabetes as i see it as a very valuable piece of equipment for any type 1. (there are also type 2's with pumps in the UK)

my advice is,

if you want a pump ASK for one.

If they say no, ASK somewhere else.

you are entitled to be treated ANYWHERE in the UK.

if you want a pump so badly you would travel to get it,

i would have gone anywhere to be told i could have a pump,

also if you are promised a pump there should be NO waiting list!!!

http://www.input.me.uk/

that website has some very good advice on it.

i think ALL children at least should be give the oppurtunity of a pump upon diagnosis, but ideally everyone who has to use insulin (including t2's) should be offered a pump. anything that can improve somebody's quality of life should receive this FREE of charge. this is why we pay national insurance. i hope if you all want a pump you shall eventually get one. if you fight hard enough you will get there :)
 
hi ebony, thankyou for your reply :D i really hope that you get a pump. The way your BG levels are isnt your fault, as you obviously look after yourself & dont want to have unstable BG levels. It just annoys me when people have bad control due to not taking their insulin etc & then they are given a pump! :oops: i've been on the DAFNE course & it did me no good but i think this is due to me already having good control. I hope DAFNE helps you & that you get a pump!
 
Undder British rules for so many things, i you do your best and have moderate success, you are not entitled to anything. I can't get test strips and I'd never qualify for any of the modern treatments. It's a good thing I don't need treatment for anything other than my T2.
Hana
 
sorry I got a bit carried away! I interpreted the bit about people who couldn't be bothered to look after their diabetes and health as them being lazy. I have spent many years being told off for not controlling my bg levels by doctors and other people who think it's that easy, I may have been a bit touchy.
You're right that if you are prepared to put the work in you should be given a chance to try a pump and therefore remain in good control. So good luck
 
hi carbsrok, my DN told me that if i wanted a pump i'd have to buy one myself & that it would cost me £1000. i was wondering how on earth she expected me to buy one with my own money, i have no idea where you would have to go to get one, directly to the supplier i suppose?
 
thats ok cowmigator! i totally understand how you feel, i go on the defensive straight away when people talk about diabetes. some people talk so much rubbish its unreal! i'm sick of people asking if i'm diabetic because i ate too much sugar! :evil: it just annoys me when some people refuse to take their insulin & them wonder why they end up with severe complications. especially when there r diabetics out their struggling on a day to day basis, doing their best but who just cant get their BG levels stable!
 
theres no way my diabetic clinic will give me one, especially now funding for them has been cut & i just cant afford 2 self fund. its annoying because its not that there arent things out there that can help diabetics quality of life, there are, but most of us will never get the chance of trying them just because its expensive
 
HI, just so you know I've never really had poor control and although I have suffered from hypo unawareness and the usual high/low swings that most type 1's have to deal with at some point, my hba1c has remained pretty stable and I started my pump 3 weeks ago, despite having pretty good control. I had to insure my pump on my home insurance to the tune of £2500. PCT is paying for it and all the supplies. My point is, everyone SHOULD be entitled and sometimes, if you get lucky, you can get one, but you have to ask, ask and then ask again, push a bit more and then stamp your feet! This won't always work (as already been posted, some people just can't get the funding) but if your DN is telling you pumps cost £1000 then sounds to me like her info is a bit out dated, so perhaps it could be an idea to educate her a bit?! Good luck with your quest! :D
 
thanks debloubed! i'm quite good at taking the odd tantrum so maybe i should give that a go :lol: maybe if i persist & try to wear them down they'll eventually give in & give me one to shut me up!
 
maybe they will Kimberly!! if you don't ask........... :wink: :lol:
 
This is something that is somewhat of a bone of contention between me and the rest of my care team. I work VERY hard at maintaining my sugar levels, so much so that within 4 months of diagnosis (coming up on my 1 yr aniversary) I had gotten my A1c to 5.9 and wouldnt you beleive it I then get the Dr's saying this is too low and probably not sustainable, I mean *** make your **** minds up.

Anyway I digress. I asked about pumps at my last check up because I have been reading up and aweful lot and also have a habbit of forgetting to take my pens, particularly glargine, with me when I go out. It doesnt help that my life can be fairly unpredictable and now I am more comfortable with my diabetes I am taking back more of the life I knew before D day.

I got the same answer, you are doing so well you don't qualify for a pump. Now I have some savings and would happily pay for the pump out of my own pocket but then I got the real kicker.
If you buy the pump yourself you then apparently waive your medical examption and you then have to pay for ALL of your supplies. I thought that was just a tad unreasonable, and at that point I certainly couldnt afford that.

So for now I just stick with the MDI's and hope that the costs come down. Hopefully we are only a few years from them nailing down the software to make the Artifical Pancreas a reality, maybe at that point there will be a rethink, we can hope but the government has wasted so much on the **** banks I suspect we will get screwed for years to come... err </rant> :roll:
 
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