Sorry, even though I wrote such a long previous post, think it worth stressing that our team valued our *motivation* in all this, and E's, very highly. We were ready in so many ways within 8 weeks, whereas they have many children and families who've been dealing with diabetes for years who aren't. Perhaps you could try this route of persuasion for Alex?
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Dropping like a stone...
- Thread starter Northerner
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Hi Patricia,
Thanks for that information! Alex's hasnt even seen our gp since diagnosis! I dont know whether they would 'back' us with a request for a pump as they dont know anything about how we deal with injections etc..To be honest i would have thought every family has the 'motivation' to be able to take on a pump as they are supposed to make life a lot easer? And if using MDI isnt achieving the desired results - which it isnt in our case - surely that in itself is enough to warrant the possibility of a pump? It really is a lottery whether its offered or not- but it seems almost negligent to me not to be offered a pump as they do help gain much better control of diabetes and all its complications!
We have clinic on monday - with a different consultant who normally deals with pumpers - so if you have any advice or 'key phrases' that you think might help with our argument for a pump - it would be very much appreciated!
We 'do' all the things we are supposed to do -carb counting, monitoring, logging all levels and insulin given, checking at night, trying to control exercise, but still we get either hypo's or very high - nothing in between! It really is soul destroying sometimes isnt it? I had aimed to convince them on monday that he needs a CGM machine as BUPA have even agreed to funding the use of one! All they want is an assurance that he will benefit in some way of having the use of one! But i dont know whether to forget about this and concentrate on the issue of a pump now! Bev
Thanks for that information! Alex's hasnt even seen our gp since diagnosis! I dont know whether they would 'back' us with a request for a pump as they dont know anything about how we deal with injections etc..To be honest i would have thought every family has the 'motivation' to be able to take on a pump as they are supposed to make life a lot easer? And if using MDI isnt achieving the desired results - which it isnt in our case - surely that in itself is enough to warrant the possibility of a pump? It really is a lottery whether its offered or not- but it seems almost negligent to me not to be offered a pump as they do help gain much better control of diabetes and all its complications!
We have clinic on monday - with a different consultant who normally deals with pumpers - so if you have any advice or 'key phrases' that you think might help with our argument for a pump - it would be very much appreciated!
We 'do' all the things we are supposed to do -carb counting, monitoring, logging all levels and insulin given, checking at night, trying to control exercise, but still we get either hypo's or very high - nothing in between! It really is soul destroying sometimes isnt it? I had aimed to convince them on monday that he needs a CGM machine as BUPA have even agreed to funding the use of one! All they want is an assurance that he will benefit in some way of having the use of one! But i dont know whether to forget about this and concentrate on the issue of a pump now! Bev
Hi again bev
Well -- my LOCAL team have also now agreed to get us a CGM alongside the pump, because they are providing one with all their pumpers...
The thing which is waved around alot are NICE guidelines -- to be honest, every child falls within them in some way or another, as, like you say, it is extremely difficult to get control -- *no matter what you do*. Nightmare. From memory, if Alex's HbA1c is above 8.5 when you see clinic Monday, you have a *clear* case to push for a pump according to NICE guidelines. If Alex is having a number of 'debilitating' (I think that's the word) hypos, according to NICE guidelines this is also a strong case...Who's to say what's debilitating? Anyway, our consultant basically said that every child falls into this category one way or another, and his letter was hugely supportive, basically stating the huge benefits of the pump to E. He said that you don't want to get into a tangle about the exact nature of the NICE guidelines with the PCT, because once holes start being picked it's awful to get through it. We were lucky that no holes were picked in ours, and I'm sure this is down the unequivocal support of our consultant and our GP; the case was approved with no fuss.
So you want to push a) HbA1c if appropriate and/or b) hypos and their effects. Our DSN says that some authorities are assigning pumps to 'problem' children first, which she thinks is unwise and may not actually benefit the most people the quickest. Our team and authority have obviously decided to prioritise people who understand diabetes and are highly motivated, not those who have 'serious difficulties' getting control. They are doing it on the basis of who's ready and willing rather than who needs to be talked around to it.
As you say, I guess most families are motivated. But some, frankly, just truck along and don't worry too much about it as long as it's not desperate. As hard as it is to believe, I think this is true. I've even heard of some families being in denial, and not doing much at all.
Anyway, you want to go in armed with your own situation, and facts and figures about pumps and complications and how you know this will benefit Alex short term and long term, physically and quality of life. You want to ask about the local capacity for pumps: how many will they be putting on per year? How many are on now? How many waiting? And what is the basis of the waiting? You may also want to ask whether they think the PCT would support you trying to get onto another clinic in a shared arrangement if there's capacity elsewhere sooner. To establish this, you have the right to phone the centres of pediatric diabetes and ask about their situation. You do need a referral, but you have the right to find out the lay of the land first.
You can see -- we pushed! But to be fair, received huge support quickly, once they realised that we knew what we were talking about, I suspect. I wish you all the luck, bev. We're not there yet, but we know it's coming, anyway, which is a real relief.
Well -- my LOCAL team have also now agreed to get us a CGM alongside the pump, because they are providing one with all their pumpers...
The thing which is waved around alot are NICE guidelines -- to be honest, every child falls within them in some way or another, as, like you say, it is extremely difficult to get control -- *no matter what you do*. Nightmare. From memory, if Alex's HbA1c is above 8.5 when you see clinic Monday, you have a *clear* case to push for a pump according to NICE guidelines. If Alex is having a number of 'debilitating' (I think that's the word) hypos, according to NICE guidelines this is also a strong case...Who's to say what's debilitating? Anyway, our consultant basically said that every child falls into this category one way or another, and his letter was hugely supportive, basically stating the huge benefits of the pump to E. He said that you don't want to get into a tangle about the exact nature of the NICE guidelines with the PCT, because once holes start being picked it's awful to get through it. We were lucky that no holes were picked in ours, and I'm sure this is down the unequivocal support of our consultant and our GP; the case was approved with no fuss.
So you want to push a) HbA1c if appropriate and/or b) hypos and their effects. Our DSN says that some authorities are assigning pumps to 'problem' children first, which she thinks is unwise and may not actually benefit the most people the quickest. Our team and authority have obviously decided to prioritise people who understand diabetes and are highly motivated, not those who have 'serious difficulties' getting control. They are doing it on the basis of who's ready and willing rather than who needs to be talked around to it.
As you say, I guess most families are motivated. But some, frankly, just truck along and don't worry too much about it as long as it's not desperate. As hard as it is to believe, I think this is true. I've even heard of some families being in denial, and not doing much at all.
Anyway, you want to go in armed with your own situation, and facts and figures about pumps and complications and how you know this will benefit Alex short term and long term, physically and quality of life. You want to ask about the local capacity for pumps: how many will they be putting on per year? How many are on now? How many waiting? And what is the basis of the waiting? You may also want to ask whether they think the PCT would support you trying to get onto another clinic in a shared arrangement if there's capacity elsewhere sooner. To establish this, you have the right to phone the centres of pediatric diabetes and ask about their situation. You do need a referral, but you have the right to find out the lay of the land first.
You can see -- we pushed! But to be fair, received huge support quickly, once they realised that we knew what we were talking about, I suspect. I wish you all the luck, bev. We're not there yet, but we know it's coming, anyway, which is a real relief.
Hi Patricia,
Thank you for all the extra information! I do think that i am becoming a bit of a pain to our team - ringing them about twice a week! It is difficult not to be too 'pushy' - but if i was complacent i doubt i would get anywhere! I was thinking about saying he is at Secondary school in september and i would rather he took time off school before then as i dont want him to miss any schooling - but i dont know if they would take that into account? His hba1c was 8.2 so not great! He does have a lot of hypos and he sometimes is tearfull with them. Thanks. Bev
Thank you for all the extra information! I do think that i am becoming a bit of a pain to our team - ringing them about twice a week! It is difficult not to be too 'pushy' - but if i was complacent i doubt i would get anywhere! I was thinking about saying he is at Secondary school in september and i would rather he took time off school before then as i dont want him to miss any schooling - but i dont know if they would take that into account? His hba1c was 8.2 so not great! He does have a lot of hypos and he sometimes is tearfull with them. Thanks. Bev
coldclarity
Well-Known Member
- Relationship to Diabetes
- Type 2
Northerner, those sound exactly like the lumps I (still) get from injecting. We thought I was allergic to Novorapid, but Humalog is having much the same effect. They don't itch most of the time now, but they're still there. And much worse on my legs where there is less fat. Interesting...
tracey w
Well-Known Member
- Relationship to Diabetes
- Type 1
can you believe it! after posting this last night i went hypo, 1 hour exactly after taking my lantus, 3.9 😱 I had increased it by 2 units the night before on dsn advice. will see how i go tonight, any problems and will be reducing again!
tracey w
Well-Known Member
- Relationship to Diabetes
- Type 1
Bev, all i can say from my experience is that my consultant has pushed for a pump for me because.......i have erratic blood sugars, very high and can drop rapidly within 40 mins or so, unexpected hypos too. He was impressed at my motivation for learning to cho count myself, adjusting ratios myself and testing at least 8 times daily. However,, he does not think pumps necessarily gain better control if you are doing these things already, but they do make life easier. Although he also said people do much better on pumps than those who arnt, I think you need to bear this in mind. Getting a pump will not suddenly make bs "normal". Im sure you aware of all this, but just impress on your team that you know the pump will make alexs quality of life much better. Hope this helps you.
Yes, this is my impression exactly -- and certainly the run up to pumping -- learning how to do it, is fairly intensive and difficult from what I can gather. The big thing I think is that the 'swings' are less frequent, because they are more able to be acted upon when approaching: stopping insulin for instance when going low (rather than having to last through the levermir or the lastest novorapid), and shifting the dosage over many hours for difficult things like pasta and rice, rather than always risking hypos and/or hypers with these... Everything may still be high or low at times, but my impression is that the risks of being extremely so in either direction are less?
Tracey,
I know your absolutely spot on! I dont think of the pump as a 'magic cure all' - but i do think of it as a 'window' into stopping the extreme highs and lows and also allowing Alex a much better quality of life - he is not doing anywhere near the exercise he used to do before diagnosis. He used to play for 4 or hours on the trampolene and then go out on a bike ride with his dad and do about 20 miles easily - so he was very fit and sporty - he was very muscley for his age - buns of steel!lol But now he isnt allowed to exercise for too long or when is is too high etc and he constantly looks tired and has 'regressed' a bit - he comes and sits on my knee for cuddles etc - he did before but not as often! ( he will kill me if he reads this bit!)
I know your absolutely spot on! I dont think of the pump as a 'magic cure all' - but i do think of it as a 'window' into stopping the extreme highs and lows and also allowing Alex a much better quality of life - he is not doing anywhere near the exercise he used to do before diagnosis. He used to play for 4 or hours on the trampolene and then go out on a bike ride with his dad and do about 20 miles easily - so he was very fit and sporty - he was very muscley for his age - buns of steel!lol But now he isnt allowed to exercise for too long or when is is too high etc and he constantly looks tired and has 'regressed' a bit - he comes and sits on my knee for cuddles etc - he did before but not as often! ( he will kill me if he reads this bit!)
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent
Hi
This is right, pumps are not magic like some people think they will be. They are hard work, especially more so at the beginning but they are a lot more hard work than mixed insulins definitely and yes more than MDI as well as you have more than one basal to deal with (we have 9 different ones) but the satisfaction is so much better, tweaking is easier as you can tweak for a specific time, stopping insulin is easier, with MDI it is already injected. The results are generally better but sometimes they may not be but that is the nature of diabetes.
Bev is right, it is a quality of life. Everything single parent that I know whose child has gone on a pump over the last few years (I would say over 20/25) they all say that their child changed overnight. Even if the child was happy beforehand, as mine was, they were so much happier, their characters changed for the better and that is due to better levels, although why it makes them change overnight I don't know but that happens.
This is right, pumps are not magic like some people think they will be. They are hard work, especially more so at the beginning but they are a lot more hard work than mixed insulins definitely and yes more than MDI as well as you have more than one basal to deal with (we have 9 different ones) but the satisfaction is so much better, tweaking is easier as you can tweak for a specific time, stopping insulin is easier, with MDI it is already injected. The results are generally better but sometimes they may not be but that is the nature of diabetes.
Bev is right, it is a quality of life. Everything single parent that I know whose child has gone on a pump over the last few years (I would say over 20/25) they all say that their child changed overnight. Even if the child was happy beforehand, as mine was, they were so much happier, their characters changed for the better and that is due to better levels, although why it makes them change overnight I don't know but that happens.
Well I have to say that even in our limited experience, when E's numbers are good, he is enormously happier. Enormously. He is relatively calm, sunny, cooperative, humourous -- his proper self in other words. The impact of bgl upon state of mind really cannot be overstated in my book...
I'm pleased to hear that your experience has been so unanimous Adrienne. It's our gut feeling too, but good to hear!
I'm pleased to hear that your experience has been so unanimous Adrienne. It's our gut feeling too, but good to hear!
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