[shiftzor]

[Post aimed at UK people]

Well according to these guidelines not very:

NICE Guidelines

And this almost empty forum thread:

UK Pumpers

So the question here is: How many people have tried to get a pump in the UK and have been rejected because they are not NICE enough? Or would like to and are unsure if they qualify?


P.S A quick thanks to shabbie for the idea.

[SueM]

My consultant said I could have a pump. Then he made up a load of new rules and regulations for me to have one.
So I pointed out the NICE guidelines to him, they don't state any of his requirements.
I told him I was not jumping through hoops for a pump.
He has also been told I am reporting him to the health commisioner.
If you are refused a pump ask for the reasons in writting.
Basicaly don't take no for an answer.

[Injecto]

"multiple-dose insulin therapy (including using insulin glargine when it’s appropriate) has failed"

I just hate the way you have to completely suck on MDI in order to be considered for the vastly superior form of Diabetic care in the form of a pump. That's just bull****. Complete bull. Why should the criteria be like that?

[JediSkipdogg]

Originally Posted by Injecto

I just hate the way you have to completely suck on MDI in order to be considered for the vastly superior form of Diabetic care in the form of a pump. That's just bull****. Complete bull. Why should the criteria be like that?

Because it's much cheaper and can actually work for many on pumps, but they want the pumps for the convenience and not a medical reason. Besides NPH and R I've never been on any form of MDI, whereas my brother is on Humalog and Lantus and it works great for him. He actually has a much lower A1C than me but that's because he eats 3 times a day and quits whereas I eat about 10 times a day.

[REDLAN]

the thing about the NICE guidelines is that they are just that guidelines.

My consultant has a trust fund. People donate to it, and also my consultant donates the fees he gets from giving talks and the like (how cool is that). My 3 day CGMS was paid for by the trust fund.

The point is my consultant has a budget for pumps - I asked about getting pump, but couldn't get one because they had already spent this years money on pumps. Pumps are allocated on need. And I asked specifically about NICE guidelines, and was told that if it was deemed that I needed a pump, then I would get one.

they are particularly keen for instance to give pumps to people who experience hypo unawareness. (and from what I remember this certainly isn't covered by the NICE guidelines)

the simple fact is that health costs money. Lots of money. And in a system with limited resources, somebody somewhere has to make a decision about how those resources are allocated.

[Gary_W]

I'm in two minds as to whether or not I would actually like a pump. It would certainly be more convenient, but the idea of being hooked up to something 24/7 does not appeal. Due to my own indecision on my wishes, I haven't tried to get a pump.

I had my clinic appointment on Friday. They don't like me at my clinic as my A1c is now 5.8 (it was 5.5 middle of last year) and I told them that this was achieved through the help of an Internet forum and that I'd be halfway dead if I was still doing things there way and my old A1c of 8.1. Which probably isn't the best way forward with them. They do seem to think that anyone with an A1c of <8 is a walking hypo timebomb so I don't see them being in favour of a pump for me.

As far as the funding goes, I can see both sides. At the present time, I am very well controlled with MDI. I would be very well controlled on a pump and it would cost the system an extra £1500 per year in consumables (plus the initial cost of the pump, education (HA!) etc). It would do a much better job on the rare occasions I excercise and it would certainly make a huge curry easier to manage (no chance of forgetting the second shot as you tell the pump to do it) but I doubt lifestyle benefits would convince them. According to the labs, I don't need one. Their definition, not mine.

The biggest difficulty of the Nice guidelines is it is a true catch 22. IMO, if you actually undertand this disease to the extent you should and you have the willpower to try, there are precisous few people that can't achieve an A1c of 9 or better. Unless you're in double figures, it looks like you can't get a pump as that's what they class as failing to manage it. The thing is, if you've had all the education and you can't achieve <10 A1c with MDI then you're not going to on a pump either. IMO of course and I realise that there are exceptions, but as a big picture I recon this is about right... I will bet there are people out there that just cannot be bothered to try with diabetes and have horrible control. They will get given a pump and will have horrible control on a pump.

Gary

[caswellhb]

Well, since pumps are only given to T1's in the uk and I am T1.5 and would love a pump right now, I guess it's a moot point.

Heather.

[Injecto]

Originally Posted by JediSkipdogg

Because it's much cheaper and can actually work for many on pumps, but they want the pumps for the convenience and not a medical reason.

Cheaper is because money rules the world, case and point.

Convenience? I hate that argument time and time again. Do you not think that a pen and MDI was the "new convenient" after peeing into a glass using dipsticks and huge honkin' needles that needed to be re-sterilized? Yes, pumps are convenient, but so was every advancement. So that would essentially mean we shouldn't advance therapy because we are only making things more convenient. Next thing people will be saying that the new "kidney pumps" should not be used until people have had failures with common 4hour, 3 times per week dialysis treatment.

Plus, there is a HUGE correlation (dare I say beyond correlation and founded in many studies over and over again) that convenience increases quality of life and as such provides better expected outcomes? If that's the case then ALL convenient therapies have more merit be default.

Originally Posted by JediSkipdogg

He actually has a much lower A1C than me but that's because he eats 3 times a day and quits whereas I eat about 10 times a day.

So it's not a valid comparison then. I can get great numbers too when I eat only 3 times a day, only salads, and exercise.

Originally Posted by REDLAN

And in a system with limited resources, somebody somewhere has to make a decision about how those resources are allocated.

I disagree. Pump costs over time with better health care will reduce future costs of caring for invalid diabetics.

[Gangrel]

Originally Posted by Injecto

I disagree. Pump costs over time with better health care will reduce future costs of caring for invalid diabetics.

Yes, but therein lies the problem. It all goes back to the type of our disease, and it's effects. Diabetes is a long delayed time bomb (not really, but just for comparisions sake) while other diseases are like grenades. You get it, you're sick, you die, or have problems, or whatever within a few years.

Diabetes, even if just moderately controlled, can take years to show any ill effects, aside from things like DKA and comas (but then again, I did say moderately controlled)

Injectio, both you, me, and everyone else on here knows how much we may cost the health care system wayyyyyy down the line, but guess what? We're not sexy enough, baby.

People would rather spend money on the here and now to fix things, rather then think "if i invest millions now, I can save the system billions in 20, 30 years".


Now, considering here in Canada, I have to pay for a pump if i wanted one (and/or fight with my insurance to get it partially covered) I'm staying out of the whole "what guidelines should there be to get one paid for by the government".....

I *will* say that even though I'm an MDI user, I definately see the benefits of being on the pump AND being properly trained/having correct ratios/etc... and it's FAR more then convienance..........

[caswellhb]

Well said Aaron.

Heather.

[shiftzor]

Originally Posted by caswellhb

Well, since pumps are only given to T1's in the uk and I am T1.5 and would love a pump right now, I guess it's a moot point.

Heather.

I would try it, if it is down to endos or consultant then there is no "advisory" information about type 1.5s, suggesting that they don’t recognise type 1.5 and technically you could be either (ignorance is king). Its worth a shot.

And I plan on shooting first and asking questions later. I have a long time until my next appointment, so I was thinking of phoning them at least initially to see what I am up against.

I just wish there was a way to change the "advise”, however with the NHS in its current state, the monetary angle will mean that it will take years to change, pumps don’t look like they will become cheap anytime soon. Still if you don't ask you don't know

[octoberlily]

Well i have just got my pump (mon) due to problems with hypo unawareness starting nearly 2 years ago. Last 12 months have been worse not been allowed to work ect.

I met the NICE giudelines maybe not the unawareness as such but the problems it can cause.

I started of on 2 injections, went on to MDI 21 years ago and never had any problems until this past few years.

Oh and Caswellhb i think type 1.5 are allowed pumps as someone on these forums has one. I'm sure when she sees this she'll reply.

Julie

[shabbie]

P.S A quick thanks to shabbie for the idea.

your welcome

[shabbie]

Originally Posted by caswellhb

Well, since pumps are only given to T1's in the uk and I am T1.5 and would love a pump right now, I guess it's a moot point.

Heather.

heather i am also type 1.5, i am a pumper as of oct 07

you could push for one now that you are pregnant

if you want one, now would be the right time for you to try and get one.

[Gary_W]

Originally Posted by shabbie

heather i am also type 1.5, i am a pumper as of oct 07

you could push for one now that you are pregnant

if you want one, now would be the right time for you to try and get one.

Sorry to semi-hijack the thread here, but...

As you've been on a pump for a few months now, Sharon, can you 'sell me' the concept of being on a pump. Why do I want one / need one?

I perceive I'm in a similar situation to the one you were in pre-pump as in controlling just fine on MDI, but a pump would make certain aspects of life more pleasant. I'm just wanting your perspective on 'why go to pumping when you're doing OK on MDI'. I tend to put up a very good fight (and know who to pick the fight with) but at this stage I just don't know whether a pump is something I want to fight for or not My HBA1c is 5.8 and I've never had a hypo I couldn't treat myself so the NICE guidelines would not support me without some fairly liberal interpretation...

One aspect of life that concerns me at the moment is excercise and the fact that I don't really get any apart from taking the kids to the park. Once I do get myself into an excercise routine, I know that a pump would make things easier to manage. At the moment I'm pretty stable with MDI but I know that the added unknown of excercise is easier managed by the pumpers... That may be a reason to go on one, but again I may manage OK on MDI. I don't really know until I try.

Gary