i have been turned down for a pump as they say my control is good enough for me to not need one yet. however i know my pct are trying to get all type 1's onto pumps in the next year or so. my big beef is that if they are trying to do this and i am willing to go on one then surely it makes sense to put me on one than fight with someone who doesnt want to go on a pump??? does this seem sensible or am i been a kook??
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Turned down for a pump!!!
- Thread starter mikep1979
- Start date
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Northerner
Admin (Retired)
- Relationship to Diabetes
- Type 1
I don't get this argument about your control being too good to need one - there are many other considerations, in particular how difficult it might be to achieve that good control! It might be that your quality of life is affected by the amount of time and effort you have to put into keeping good control, that would be eased by using a pump.
Oh Mike. I am so sorry to hear that you have been turned down because your control is too good. It is like you are being punished for taking good care of your diabetes when really you deserve the luxury of a pump because you do take such good care! It's a shame! The better care you takenow, the less you are going to cost the NHS in the long term. I wonder if the NHS are being a bit short sighted as good control now (inc use of pump to achieve this) will save money long term, surely?
We are just waiting to hear if my son is going to get one. We have approx one week to wait for news. Fingers crossed! He has wanted one for a while but his control was too good etc. Unfortunately (or fortunately, really!) he developed a needle phobia and now is being strongly considered for one.
We are just waiting to hear if my son is going to get one. We have approx one week to wait for news. Fingers crossed! He has wanted one for a while but his control was too good etc. Unfortunately (or fortunately, really!) he developed a needle phobia and now is being strongly considered for one.
sofaraway
Senior Member
Mike I'd say don't give up, alot of people get turned down the first time that they ask about it. Have you made detailed records of your blood sugars activity food etc. to show where your problems are and how you think a pump will help you, if not then it might help you with your case.
Do you have any idea how many type 1's there are in your PCT? I imagine to try and get everyone on a pump would be a massive task. Agreed that theres no point tryignt o force people onto pumps if they don't want it.
Don't give up mike
Do you have any idea how many type 1's there are in your PCT? I imagine to try and get everyone on a pump would be a massive task. Agreed that theres no point tryignt o force people onto pumps if they don't want it.
Don't give up mike
i spent a long time being a really bad diabetic and not looking after myself, but i got a wake up call and sorted myself out. i still do 8 tests a day on my levels and also carb count. i take insulin regardles of what i do and i am a very fit and active guy. just smacks of injustice for me that someone with no control who doesnt want control has got priority over me. i understand they need to sort them out cos they cost tonns of cash and i dont, but surely this isnt the way to do it.
sorry folks rant over now
sorry folks rant over now
this is my second rejection nikki. i keep diarys of everything lol food exercise insulin intake the list is endless.
not sure how many there is but i would say quite a few. agreed it is a mamoth task but if they want to do it then surely they should be aiming to do it a correct way and putting those with poor control through choice who dont want one on them first isnt the right way
sofaraway
Senior Member
Thats c**p Mike, seems like you have done things the right way
http://www.input.me.uk/
maybe this organisation will be able to help you. i know they have helped alot of people get pumps who were turned down. might be worth droppign them an email to see if they have any suggestions
http://www.input.me.uk/
maybe this organisation will be able to help you. i know they have helped alot of people get pumps who were turned down. might be worth droppign them an email to see if they have any suggestions
Hi Mike,
That stinks hun, especially when you have done everything the right way.
Have you contacted your local health authority? Dont quote me on this but I think you may have ground for an appeal.... Write to your local MP too... Maybe get your local paper involved as well.
Heidi
🙂
That stinks hun, especially when you have done everything the right way.
Have you contacted your local health authority? Dont quote me on this but I think you may have ground for an appeal.... Write to your local MP too... Maybe get your local paper involved as well.
Heidi
🙂
- Relationship to Diabetes
- Type 1
I have faced exactly the same Mike and I have been chasing a pump for a long time - I have now changed to a PCT that is all for them (yipee!) - but you still need the bad results/or it has to be documented how much 'strain' you are under...previously I have always been honest - now I am going to give them the results they require...at their suggestion! It's such a heap of croc but unfortunately necessary.
I second that admin, well said.
I wont say anything else or I'll end up on my soap box.
All I will say is look how Parliament...have de frauded the tax payers.....
Hey if being slightly economical with the truth and it gats you some where then go for it!!!
Heidi
🙂
tracey w
Well-Known Member
- Relationship to Diabetes
- Type 1
I know where you are coming from, you have to do whatever it takes to get one, I think every type one who is committed to testing, and generally looking after themselves should be on a pump if it is their wish, we deserve it. All the red tape stinks!, keep going Mike, tell them what they need to hear 😉
Mike, i think your PCT are just trying it on! The Team at the DUK weekend told us that the NICE guidelines cover various criteria, but one of the main ones that is taken into account is the fact the 'you want one'! It is as simple as that. I think (?) they said that the new guidelines out make reference to this fact. If not, then they will say this very shortly.It is all about quality of life - and if you feel that having a pump would be of benefit to yourself - then you have a very strong case - and as i understand it - they cannot refuse you one on the grounds of funding!
Get in touch with the 'input' link thats on here - they have loads to do with the childrens forum i am on and they go out of their way to help people in your situation. John Davis i think his name is. Let us know what they say?🙂Bev
Get in touch with the 'input' link thats on here - they have loads to do with the childrens forum i am on and they go out of their way to help people in your situation. John Davis i think his name is. Let us know what they say?🙂Bev
tracey w
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi Bev, I havent seen these new guidelines and would be very interested to see them, it would certainly make getting a pump much easier for everyone! The pct cannot refuse funding, BUT you have to be referred from your consultant etc first, this is where Mike is getting the brick wall at the moment I think? For the referal, you must fit the criteria, its a shame its all down to cost :
runner
Well-Known Member
- Relationship to Diabetes
- Type 1.5 LADA
Mike, it should just be a matter of choice. Nasty needle phobia you're developing there Mike. 😉
Mike, I have had a quick look but the nice guidelines are from 2008 - so i cant find any newer advice, sorry. I think (?) the guidelines that relate to MDI being impractical etc is perhaps relating to children under 12? As Alex is 11 , perhaps thats why we were told what we were told. To achieve your good control - have you had lots of disabling hypos? This seems to be a criteria for adult diabetics. I would urge you to get in touch with INPUT. Bev
Sugarbum
Well-Known Member
- Relationship to Diabetes
- Type 1
HI Mike,
Firstly, my sympathy. I know what it is like to really, really want a pump and get rejection. Please dont give up. I am getting my pump in July and that is the result of a really long fight. I absolutely urge you to follow up on Bevs good advice, contact input and John Davis will offer you guidance, very experienced in this minefield that is the NICE guidance, funding and getting accepted.
Im doubtless that me saying I know how you feel helps, but really I have been there. I was coached like a job interview pre 'getting approved' for my pump, hang in there. Im just sorry to hear a story that mimics mine, It was only when I made a drama, told my clinic the complaint against them was written and that I would not see them again- my GP will happily collect the money for checking my HbA1c that I got me noticed (I am a total drama queen, I wasn't really going to be that dramatic!).
I wish you all the best mate and all the good luck you need x
i want to go on a pump as for work it wil be easier than having to take my insulin pens with me. i work in some really nasty places and really could do without having to worry about it.
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