I am a type 1 diabetic for 9 years and have been and still is battling with my diabetes nurses to get on a pump they are making me go round in circles to get this with no such joy as of yet. I am now at a stage where they have offered me a second hand machine to trial out once I provide them with a detailed dairy of blood sugars and carb counting. But yet my sister goes to the same local team (she is a diabetic type 1 also diagnosed 7 years ago) and mentions she wants to try for children and os put straight on a new pump of her choice no questions asked! Is there anyone else I can see outside of the NHS for help with my current situation or somewhere I can complain about the lack of service I am receiving.
Lack of service from NHS and alternatives?
- Thread starter arranferrie
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catapillar
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I would contact input diabetes for advice on whether you meet the criteria for pump funding & how best to approach this with your hospital.
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You could get in touch with INPUT to see if they could help in any way:
http://www.inputdiabetes.org.uk/about-2/contact/
http://www.inputdiabetes.org.uk/about-2/contact/
I have been asking about insulin pumps for the last 3 years, have been told by my nurses that as I work 3 shifts, including nights, I would be better for having one.
I saw my diabetes consultant and have jumped through all the hoops he has set before me but now my dietician and specialist nurses have signed me off as they feel they have done all they can and I now feel that I am on my own with this and I am quickly losing the will to carry on testing 4 to 6 times a day, counting the carbs and doing all that I have been told to do.....
I give up!!!!!
Perhaps I am just not meant to be on a pump.......
I saw my diabetes consultant and have jumped through all the hoops he has set before me but now my dietician and specialist nurses have signed me off as they feel they have done all they can and I now feel that I am on my own with this and I am quickly losing the will to carry on testing 4 to 6 times a day, counting the carbs and doing all that I have been told to do.....
I give up!!!!!
Perhaps I am just not meant to be on a pump.......
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@silvabandit How do you compare against this: http://www.inputdiabetes.org.uk/alt-insulin-pumps/is-it-provided-by-the-nhs/ in terms of criteria? Even if you are on the ABCD list of criteria, that give you something that you can use to talk to the consultants about.
In addition, if you are seeing a reasonable variance in your bloods (and this is where the glucose monitoring software is really handy), such that your standard deviation is more than 30% of your average glucose level, then many consultants also consider that to be an issue.
Personally, I've found that if you have decent results, you need to push very hard to get there.
In addition, if you are seeing a reasonable variance in your bloods (and this is where the glucose monitoring software is really handy), such that your standard deviation is more than 30% of your average glucose level, then many consultants also consider that to be an issue.
Personally, I've found that if you have decent results, you need to push very hard to get there.
@arranferrie, you do not say why you want to go on a pump. Whilst it has shown to help manage diabetes better, it is not a cure-all. In fact, since I have been on my pump, I have had to work harder to count my carbs and adjust my basal when I exercise and change the sets every other day. A pump is definitely not easy.
As has been previously mentioned, there are criteria you need to tick to qualify for a pump: unfortunately, it is expensive and the NHS does not have enough money for everyone (and it is not the correct answer for every one because of the points I raised above).
Your sister got a pump because she has a genuine reason to have one (tighter control when pregnant). The justification I have is that I am very active and exercise was causing too many hypos.
Just asking for one does not work: you need to prove you need one more than others in your area.
As has been previously mentioned, there are criteria you need to tick to qualify for a pump: unfortunately, it is expensive and the NHS does not have enough money for everyone (and it is not the correct answer for every one because of the points I raised above).
Your sister got a pump because she has a genuine reason to have one (tighter control when pregnant). The justification I have is that I am very active and exercise was causing too many hypos.
Just asking for one does not work: you need to prove you need one more than others in your area.
richyb
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I have been type 1 for 50yrs, had eyes lasered, forzen joints, lumpy injection sites, and now they have been changing my regime not good sugar levels. Asked for a pump and still not got one. So i reckon you only have another 41 years to get to my level of frustration. If you live where i am No chance....
catapillar
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Have you asked for support from INPUT?
http://www.inputdiabetes.org.uk
They are a charity dealing with access to diabetic technology on the NHS, they are very helpful and very responsive and might be able to over some advice on steps you could take to improve your chances of getting a pump.
richyb
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i have been in touch with Input who were very proffesional and made some suggestions but my consultant is useless and won't even see me. It is the consultant that has ultimate power. I have also complained to the quality care commision
catapillar
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I don't think it would be within the remit of the CQC to do anything. It might be worth raising concerns to PALS sat the hospital. You could ask to see a different consultant at the hospital. Or you could ask your GP for a referral to a different hospital to see a completely different diabetic team if your relationship with your consultant has broken down.
My GP mentioned that if you have decent control and don't qualify for a pump it is still worth asking every time you see your diabetes team and discussing what it would change, as they have to make a note of it. He then said that although it is unlikely, if funds open up and you have been consistently talking about a pump you may be able to get one. I don't know how accurate this is or whether this has ever happened before, but just a note.
