Recent Posts in General Discussion

Jun 5, 2010

steve o 5 posts

Topic: General Discussion / I want an insulin pump

I am totally gutted last week i saw my consultant at the hospital to ask about getting an insulin pump. I am a type one diabetic have been so for 24 years and take humalog and lantus insulin. I completed the DAFNE course back in February which i found really helpful and enjoyable and would recommend it to any type one diabetics who are thinking about going on one. My consultant told me that because my HBA1C is 7.9 and i am getting hypo awareness he thinks my chances of getting a pump are very small. I insisted that he writes a letter to my PCT supporting my request for a pump because i believe this is the way forward because although my HBA1C was good other times previously it has been bad and i believe that i would get much better control and feel better in myself if i had a pump. I was wondering if any one else has been in a similar situation and if there are any organizations who can help me in my fight to get a pump.

Jun 7, 2010

Anil 39 posts

Topic: General Discussion / I want an insulin pump

I don't understand why you would want a pump, Their big a bulky and dont do anything apart from release the insulin you tell it and when you tell it to. Kind of like.... An insulin pen.
Pumps are VERY expensive and cost the NHS a lot of money for just 1 patient for just 1 Year. And in our current climate and NHS deficit I don't think you will get one even with a fight, Unless you ABSOLUTELY NEED one. Your HBA1C is very good at 7.9, Perhaps it could come down a point or two. But i'm sure you could manage this by being a bit more vigilant in your control.

As for organizations to help, I've been looking around on the internet, and you'll probably be on your own, Pumps are very expensive and are usually a last resort for most people. My diabetes control was poor for about a year, but that was just me being lazy, You just have to get into a habit of testing and correcting, and LEARNING, thats what DAFNE is all about, no one will get it instantly, it takes practice and vigilance, but with a bit of both, you'll have excellent control and you'll feel much better after that.

Don't be gutted about not getting a pump, Honestly, I'd feel Insulin pens are much better and more flexible for most our lives. And im sure once you got the pump, you'd still find it frustrating having a to carry around a device the size of a small mobile phone ALL THE TIME, when you sleep, out with friends and such.

Here's more info if your interested, but I think its a long shot, especially with our NHS practically being bankrupt:

http://www.diabetes.co.uk/insulin/Getting-an-insulin-pump.html

Jun 16, 2010

novorapidboi26 1,819 posts

Topic: General Discussion / I want an insulin pump

I agree with Anil........

Pumps should be reserved for people who cant get control through no fault of thier own.

If you can control yours, which you can from the blood result posted, then you shouldnt have one, you dont need one.

Also you say you have been diabetic for 24 years, thats a while, long enough surely to have accepted the condition. It should just be a part of life now surely.

Just my opinion though, everyone has specific needs.

My lowest result in years has been 8.0 thanks to dafne, and its sure to drop.

Jun 16, 2010

Rachie Wilson 9 posts

Topic: General Discussion / I want an insulin pump

I agree with both Anil and Novorapidboi26 regarding pumps been used when you can't get control.

I went on DAFNE course in Jan this year and my HBAC1 before this were all in the 8's, this is why I got sent on the course and it has now come down to 6.6 (my last one in March). Which show that I can control it and i still only do around 4 injection a day. I would like to try a pump but I know there are worse people out there with less control I than I have got and really I live a normal life. There is people with diabetes that really need the pumps and can't get one and they are ill all the time due to not having control.

If i got offered one now, I would turn it down as I lead a normal life and someone out there would benifit from it much more than I would.

Jun 23, 2010

Katy B 8 posts

Topic: General Discussion / I want an insulin pump

Dear Steve o, I am sorry your consultant didnt seem very forward at helping you. Perhaps maybe he was testing you on how important it was to you and your desire to have one as there is no point in him fighting to get you one if your not passionate about having one. When you next see him, go armed with some research. Look at the different pumps that are funded in the Uk, ie The veo, Accu-chec, and the medtronic. Find some strong resons why you would benefit from one. Do you do shifts? Are you active? Is one day differnt from the next? Do you have lots of hypos? All good reasons to have a pump.

I am rather offended by the other posts on here. Anyone who is trying to improve their control or quality of life should be offerd the chance of having a pump. I understand they are expensive but the cost to the NHS would be lowered due to better control with the pump and thus lowering complications with not only ie, foot ulcers but other things such as depression.

I had reasonable contol after doing DAFNE. My HbA1c wasnt sky high and my hypo awareness is there. I got funding for a pump no problem. It has given me my own normal life back after it was snatched away by the GP who told me I was Type 1 down the phone. I now dont inject in public, my handset tells my pump what to do. My levels are much more stable and consistent instead of peaks and troughs and I have my very own pancreas in my pocket instead of stabbing my poor thigh/tummy/bottom with a nasty needle. I love my pump and it wasnt hard to get but it would be damn near impossible for anyone to take it away from me.

Steve o fight your corner and insist you need one.

Jun 24, 2010

Rachie Wilson 9 posts

Topic: General Discussion / I want an insulin pump

Hi Katy

I totally agree with you thats if it is going to help you in the long run then fight for it all the way. All I was trying to say is that since doing DAFNE i have got back some control and I can manage my diabetes really well. As my last HBA1C is now 6.2 which is in the perfect range.

Everyone is different, maybe I have the wrong attitude but I have injected for over 21 years now and I can't remeber any different as far as I am concered injecting is part of my life.

I am glad to hear you had no problems getting your pump, did you have any problems getting it??? As it seems to me depending on where you live depends whether you can have one or not. I am sorry if I upset anyone by what I wrote in my perious post.

Jun 24, 2010

Katy B 8 posts

Topic: General Discussion / I want an insulin pump

Ah ok Rachie. The posts above all seemed rather attacking rather than supportive to me. Like why would you want one, cost to NHS and turning one down... In response to Anil, they are absolutly not like a pen, where after you have injected you cant take it out, and thinking the day in advance whether you need to adjust background because you're going to be particularly active. They can be suspended completely and the basal rate can be adjusted hour by hour. If you are heading low you turn it off rather than having to eat. You can go out on a jog on the spur of the moment. Why would anyone turn down such a clever, flexible gadget? Yes you tell it when your eating but it can calculate how much active insulin you have left from your last snack and take into consideration your glucose level there and then and it makes its own calculations and delivers the insulin acordingly based on how many carbs you told it you are about to eat! It can deliver insulin over a longer period of time, ie if eating fatty pizza or a curry, tell it so and it can deliver over 45 mins if you so wish, like a real pancreas would and not in some big ball of liquid in your leg.

The cost to the NHS is irrelivant. Its what you want and how you want to be treated that matters. In other countrys they have a much higher pumping rate than the uk.

DAFNE is amazing and im so pleased to hear your HbA1c is fab! Well done as it takes effort and comitment. I personally see the pump as the final step in getting the best contol. Ok it might not be for eveyone (I can not for the life of me work out why anyone wouldnt want the next best thing to having their own pancreas back) but we should support those that do. I didnt want injecting to be part of my life. I hate fiddling with them, I hate disposing of them, I hate getting them out in public or infront of my colleages or family members, I hate the little blobs of blood they leave on my clothes. I love my pump, its amazing.

I didnt have to fit criteria, I showed how passionately I wanted/needed one to be how I percieved as being a normal person if I got one. I showed I had knowledge and understanding and committed to learing the ins and outs of it. My hospital were fab, I asked an I got and my specialist is the most special man to me as its given me everything about a normal life back. Bein DAFNE trained means you are one step closer to getting one if you asked as you have to carb count to use it!

Jun 25, 2010

novorapidboi26 1,819 posts

Topic: General Discussion / I want an insulin pump

I am one of thise posts who was slightly negative towards pumps, or not the actual pumps but the motivation behind them.

I have not heard any stories yet on here that to me warrant the use of a pump.

Wanting one purely to make life easier is not an option I beleive, eveyone else has to test and inject and if that is hard for some people, thats unfortunate, but they will get used to it.

I am all for pumps if control is difficult, not purely so you dont need to jag up infront of friends and family etc.

And rememeber, money makes the world go round, pumps must surely be more expensive to maintain and to make the insulin delivery cartridges.

The cost to the NHS is also very relevant, do you know ho many people are diabetic in the UK. (and world)

If you have one enjoy it..........................

Jun 29, 2010

cupcake 3 posts

Topic: General Discussion / I want an insulin pump

I have been Diabetic for 7 years and finished DAFNE course 2 months ago. I am getting a pump next week and am very apprehensive about it. I have had no hypo awarness now for 18 months despite efforts to get these symptoms back. I have about 3 hypos a day at various times and many result in hospital treatment and fits. I would love to manage with my pen alone and the thought of excercise would be a dream but just not possible at the moment. However on my dafne course the consultant said that anybody who met the NICE criteria could request a pump and would be given one. I know two graduates who were on my course for that reason alone, even with relativly stable BG's. Good luck , hope you get what you want.

Jun 29, 2010

novorapidboi26 1,819 posts

Topic: General Discussion / I want an insulin pump

Now thats the kinda control where a pump would benefit in order to regulate delivery over longer periods.................

Its strange that though.....

I have one or two a week, and thats me got good control now........

I would love to learn about why people like yourself cupcake have so many hypos..................

Do you know why it is????

What units of insulin are you on??

Jun 30, 2010

Tony.P 16 posts

Topic: General Discussion / I want an insulin pump

Having had a pump and had to give it back I can relate to this subject, they are very convinent and my levels have gone up since comming off it, but I think the DAFNE course is the key NOT the pump. I have to say there are some down sides to the pump, sleeping with it certanly is not great, they are expensive to the
NHS not that that should be an issue if you really need one.
there is a lot of stuff you need to carry around with you too, canulars, resovoirs,insulin (obviously), Batteries.
So do some research, would I go back on? not sure at the moment.

Jun 30, 2010

novorapidboi26 1,819 posts

Topic: General Discussion / I want an insulin pump

The downsides of the pump described in the last post surely outweigh the positives......the only positive I an see is the ability to deliver over a longer gradual period......

Jun 30, 2010

Tony.P 16 posts

Topic: General Discussion / I want an insulin pump

the amount of insulin used is very well controlled on a pump it has to be said, you don't have to round up or down on your carb's and it does take into account your active inuslin although I found that a bit of a pain at night if I was a bit high it would not give suggested dose so I had to override it, but that is a minor issue. I liked the fact that whilst out and a bout I could just dial up the amount of insulin i needed push button and away you go, very discrete but I also found the canulars would irritate me at times and I did not like inserting them every 2 or three days the little needles in the pens are in my oppinion less uncomfortable.

Jun 30, 2010

Katy B 8 posts

Topic: General Discussion / I want an insulin pump

Are you more worried about the cost to the NHS or the cost of your health? your own health is priceless and you should want the best care possible! You do not need to carry around canulars and resovoirs unless you were going on holiday or something. All you need day to day is your pump and testing kit. Sleeping with it doesnt bother me, I leave it loose and it follows me around the bed. Its not even an issue!

* Pumpers report better quality of life compared to using other devices for administering insulin. The improvement in QOL is reported in type 1 and insulin-requiring type 2 diabetes subjects on pumps.

*The use of rapid-acting insulin for basal needs offers relative freedom from a structured meal and exercise regimen previously needed to control blood sugar with slow-acting insulin. The alternative basal insulins, such as the long lasting insulins injected once a day, often release their insulin at a very unpredictable rate.
Many pumpers feel that bolusing insulin from a pump is more convenient and discreet than injection.

*Insulin pumps make it possible to deliver more precise amounts of insulin than can be injected using a syringe. This supports tighter control over blood sugar and Hemoglobin A1c levels, reducing the chance of long-term complications associated with diabetes. This is predicted to result in a long-term cost savings relative to multiple daily injections.

*Many modern "smart" pumps have a "bolus wizard" that calculates how much bolus insulin you need taking into account your expected carbohydrate intake, blood sugar level, and still-active insulin.

*Insulin pumps can provide an accurate record of insulin usage through their history menus. On many insulin pumps, this history can be uploaded to a computer and graphed for trend analysis.

*Neuropathy is a troublesome complication of diabetes resistant to usual treatment. There are reports of alleviation or even total disappearance of resistant neuropathic pain with the use of insulin pumps.

*Recent studies of use of insulin pumps in Type 2 diabetes have shown profound improvements in HbA1c, sexual performance, and neuropathy pain.

If you did some research or were allowed to try one over a week Novorapidboi26 you would relise they do more than just deliver insulin, You can have a standard bolus, extended bolus, combination bolus and a superbolus. You can increase and reduce the basal rate hourly (Novorapidboi26 this would help you and your dawn phenomenon), You can have a tempory basal rate for exercise, illness, stress etc. I not wasting my time arguing with you, and im not here to make anyone even want one. Im here to make it clear to anyone that DOES want one that they are infact a brilliant step forward and not a negative, scary or in anyway difficult to live with. Maybe if you tried one you would realise, but you just keep worrying about the NHS why dont you....

Jun 30, 2010

novorapidboi26 1,819 posts

Topic: General Discussion / I want an insulin pump

I mean no offence......all I m saying is everyone can't have one just because they can't be arsed injecting.....patterns can be spotted on paper......dafne educators would agree I say......only if u can control the condition after trying everythin is it suitable........

Jul 1, 2010

novorapidboi26 1,819 posts

Topic: General Discussion / I want an insulin pump

Edit*

Only if you cant control the condition after trying everything is it suitable..........

We could go on forever weighing up the good and bad........

Jul 1, 2010

Tony.P 16 posts

Topic: General Discussion / I want an insulin pump

I think it important to have this debate, i am sure my pump was taken back on purely Financial reasons.

Jul 1, 2010

novorapidboi26 1,819 posts

Topic: General Discussion / I want an insulin pump

Hey Tony,

Now whats happened to you is shit, you were given an pump, to find it had positive effects, which naturally it will, then taken back off you...

Thats why they should be given to individuals who are always low, or high, or both, through no fault of thier own.

HCPs should have realised that you were able to control your sugars normally.

Its a sad thought but it does all boil down to money and thats the reality.

Anyone saying that money doesnt matter is disillusioned.

Theres cuts left, right and centre in th UK.

Pumps are not pratical in everyday life, surely having one just brings it home even more that you have this crappy condition.

Oh how I love my passionate opinions...

Please join the debate.....

Jul 1, 2010

Tony.P 16 posts

Topic: General Discussion / I want an insulin pump

we have to be passionate about our condition i think. The problem is it was a trial but on the day of the end of the trial they gave us hope that we would keep the pumps, only to be told by phone a few days later that we had not met the criteria so read that as you will.

Jul 18, 2010

toni 9 posts

Topic: General Discussion / I want an insulin pump

Cupcake
I have no hypo awareness either and this has resulted in my having 3 severe hypos in the last year.
Why some people cant believe this is beyond me.!!
I have been diabetic for 30 years and counting.
I too would like a pump and i would dearly love to get back to work.
You will have to let me know what the pumps like and how it works for you.

Aug 9, 2010

Jennypenny 34 posts

Topic: General Discussion / I want an insulin pump

Hi , i have had diabetes for 30 years , i too suffer with hypo unawareness and have done for quiite a few years . My diabetes has often been discribed as brittle diabetes because i could inject the same , eat the same and exercise the same over a matter of time and it will never give the same blood results !!! Years ago i was offered a pump and choose not to have one as i felt being a diabetic was enough without carrying something about me telling everyone i was diabetic !!! ( pumps are now half the size they were originally ) Since doing DAFNE my views have changed .......... I have accepted that i have never had perfect control of my diabetes , i have diabetic related complications , i have had diabetes 30 years , i suffer with hypo unawareness and DP and i now feel Something needs to be done , so when i go for my DAFNE follow up appointment tomorrow i will be signing papers for a pump . I do work and have spoke to my employer who says she will support me with hospital appointments for getting sorted with the pump too .

Aug 9, 2010

toni 9 posts

Topic: General Discussion / I want an insulin pump

jennypenny,
please keep in touch and let us know how you get on.
and the best of luck

Aug 9, 2010

Nat 30 posts

Topic: General Discussion / I want an insulin pump

Jennypenny
I too was always told that I had brittle diabetes but now they don't seem to use that term anymore. I have been diabetic for nearly 20 years now and am the same as you eat, inject, exercise identical days and with totally different BGs. I too am hoping to go down the pump route (and as you say they are half the size and hopefully less noisy than the original ones). Keep us posted!

Aug 10, 2010

David Bagnall 1 post

Topic: General Discussion / I want an insulin pump

I have to say to me the costs are of little concern, the NHS funds plenty of people who have complications through their own fault...smokers, heavy drinkers, drug addicts etc but no one is discussing the cost implications of treating these people so why are people beating themselves over the costs of a relatively cheap insulin pump.

However I have no desire to use a pump and be attached 24/7 to a device that constantly reminds me that I am diabetic...when you roll over in your sleep there it is...when you want to have sex you have to take it off (how romantic)....every time you want to get changed there it is jutting out reminding you.

With injections its over in seconds and you are free to carry on like every other human being out there.

Just my thoughts I think to a certain extent the manufactures / drug companies love expensive complicated systems as it ties in users and they have a customer for life.

Aug 10, 2010

novorapidboi26 1,819 posts

Topic: General Discussion / I want an insulin pump

I feel the same in some ways about pumps......

But after speaking to users who use them on the diabetes UK forum my opinion has been alterered.......

Som people do need them for there graduall release of insulin as well as the very small doses it can deliver to the over sensitive individuals........

If you have one just for the convenience of not injecting........I disagree......