which areas are pro(or anti) insulin pumps?

[scotts mum]

Hi
I would like to approach Reading Hospital about a pump for my son (age 11). Does anyone know how Reading stand on helping to get them? or are they anti? I would like to know in advance so I am mentally prepared! From what I have read on here, some hospitals are more willing than others!
Thanks.

 

[ma5on]

Hi scotts mum

I don't know about Reading specifically, but from my experience the hospitals will require your son to have done some form of carb-counting course as this is an essential skill when using a pump.

Also, I BELIEVE the NICE guidelines state that the patient needs to demonstrate an inability to maintain an HBA1C under 8% without persistent and debilitating hypos. I think this might be different for children though.....hopefully some experts can advise???

(Only know the above as I am currently being considered for a pump myself at Basingstoke, but as this falls under Hampshire and not Berkshire I can't assume the same applies! Love the NHS lottery!!!)

ma5on

 

[scotts mum]

We have been carb counting since Christmas, although have never been on a course, thank god we have intelligence! It is only through reading on here I have found out that there are courses! Also we cannot maintain hba1c under 8, although when i ask questions about it all i get back as an answer is" Its frustating isnt it!"
We are under Reading hospital, although we live in Newbury, and i am absolutely appauled with their care! There was meant to be a great network of support and I have never experienced it! They seem not to like you to know too much! I frequently get brushed off with questions and they are not up to date with all the new things happening and progress being made!
I know this is my personal experience of them and Im sure there are people who cant praise them enough!
I think this is why I would like to know in advance their reaction so I can prepare my battle with them! It certainly is a lonely journey, isnt it!
X

 

[jopar]

Hi scotts mum

If you check out INPUT, you will find several contact numbers, they will be able to tell you which consutlants in your area are pump friendly, they will also give you lots of advice, and help if you need to push your PCT for funding..

As sadly even with NICE guidelines and the improvements made last year giving better access to children, it is still a struggle for many..

 

[hanadr]

Hi Scott's Mum,
I'm in Reading too and not impressed by the care received by my T1 husband. I want him to ask to be put on a pump too.
It's been my experience that anything expensive is hard to get in Reading. You have to fight!

 

[kegstore]

It's my understanding that children under 12 are specifically identified as deriving benefit from the therapy, so I'm keeping my fingers crossed for you! The NICE guidelines also seem to indicate that conventional MDI is preferable in the 12-18 agegroup, although I'm not sure why that would be, so get in there while Scott's still 11.

 

[jopar]

The NICE guidelines were amended last year, in the main a more positive, as it gave credence to ‘quality of life’ aspects of benefiting from using an insulin pump and how they determined hypo’s to include a fear of hypo… Downfall was they increased the HbA1 level from 7.5 to 8%...

They did improve the guidance concerning children, which in the old guidelines were really non-existent…

In the main the changes for the 12-18 years olds, is that they don’t have to have tried MDI previous to getting the pump, not do they face having under go a trail of MDI after having the insulin pump to be able to keep it…

There are several reasons for certain areas shying away from pump therapy, this can be from the consultant diabetic team not being educated in pump therapy, and some older consultants could be reluctant to research and/or use it, as with the first generation pumps did have and caused problems for the diabetic, but most of these have been resolved in the main, also they might be concerned as a downfall to pumping is that there no background insulin as backup, so any problems with pumping the diabetic can quickly become DKA…

And yes the actual cost of buying the pump and running it is a consideration indeed…

As you have in the main two types of diabetics. The can’t and the won’t kind…

The can’t diabetic

Is the diabetic who how ever hard they try, can’t not achieve good control, they’ve are doing the monitoring working with there insulin to achieve good control etc… And does include those that have other medical conditions that need to be taken into consideration with how control is effected…

The won’t

Are the diabetics who don’t bother looking after themselves, nor will they educate themselves to learn how it may be control/improved…? If they receive the education then they have no intention of doing what is needed to gain the control they need…

And with this latter group the won’t it is totally pointless to fund insulin pump therapy, as they would achieve very little or no improvements and yes in my opinion it is a waste of money and resources…

But with this all going on, the ones that should have the option available to them, are children and those who have tried all sorts to control there condition, with out arguments to funding…

 

[ma5on]

Thanks Jopar- Excellently put!

I once fell into the 'won't' category, partly because of my own ignorance (and subsequent battle with Diabulimia), and later because I then became a 'can't'.

My lowest HBA1C ever is my current one of 9.8%. I test at the moment between 8 and 10 times, use corrective boluses where I think necessary and am now lo-carbing. Despite a couple of fantastic weeks in the month I always come down to having 2 awful ones.

At the moment I'm waiting to go on a Continuous Glucose Monitor which I hope will demonstrate the problems I am having. This I have been told, is another citeria I have to meet before they will write to my PCT for funding.....I feel like an Olympic hurdler (7 years in and counting!)

The crazy thing is, the daughter of a family friend was diagnosed 2 years ago aged 12. She was put on a carb course within 2 months and offered a pump a year later (something her mother declined as she felt it would be too much after everything else!) - Too much too soon, maybe? But she has fantastic control without one (partly due to her obsessive mother!)

They live in Norfolk so it really is the 'luck of the draw'!!!

I think the thing to do is keep on til they get sick of you. I have been asking Basingstoke for one since I moved there from Portsmouth PCT 2 years ago. Tehy only took me seriously at my last appointment when I took all my BS records, food diaries and some studies on the benefits of pump therapy that I had found. Instead of letting them run the appointment, I took over for once and they ended up getting the dietician to see me same day!

Keep-on-pushing-til-they-get-sick-of you!!!!