I have been interested in insulin pumps ever since diagnosis 12 months ago! After seeing my DSN today she doesnt see any reason why i should not be allowed a pump apart from the fact i dont fit the NICE guidelines and have a perfect hba1c, she even said im one of her best controlled. She said though if i feel a pump would benefit me and that i want one i should put my case to the consultant. Im seeing him at the begining of september so i am planning on going in there armed with information. But how can i persuade him i should get funding? What have any of you guys said? Thanks 🙂
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Putting your case to the consultant!
- Thread starter EmmaLou
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Northerner
Admin (Retired)
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- Type 1
Emma, I can't advise you regarding the pump, but will be very interested in the responses. It seems you and I are 'twins' in a lot of ways! I come from Brighouse, just down the road from Huddersfield, I was diagnosed just over 12 months ago, and I have a perfect HbA1c!
But that shouldn't mean we can't have pumps too! Good luck, hope you get some good advice - I'll be listening in!🙂
But that shouldn't mean we can't have pumps too! Good luck, hope you get some good advice - I'll be listening in!🙂
Well im seeing a different consultant the next time i go so im hoping he is in to them cos i know my last one wasnt he was very old fashioned to the point that he didnt even want me to be on MDI!! They also only offer the accu check combo at my clinic but any pump will be fine! But if i get any where with him i will defo keep you updated, i dnt see why we shouldnt be allowed them we work as hard as everyone else but it just seems to work for us. We will see!
Viki
Well-Known Member
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Hi Emma,
I personally got a pump because i could not get control with injections and had months of records to show that i was carb counting accurately and spending a lot of time trying to get my levels right with no success.
Even after having endured the comments of "you must have really bad diabetes then" (a non diabetic) and "you must have been f'ing it up some how" (another type 1 - charming!) i would say everyone should be given pumps and people should be better educated about their existence, if its proven to improve control and, more importantly in my opinion, improve quality of life then money SHOULD NOT be an obstacle for any one.
Cant help in your particular situation except to say good luck. But youre doing the best thing in researching your personal case and going armed with all you can!
I would say though, if you do get it, be prepare for some hard work and lots of tme thinking about your day to day management! It really is like starting from scratch 🙂
Good luck x
I personally got a pump because i could not get control with injections and had months of records to show that i was carb counting accurately and spending a lot of time trying to get my levels right with no success.
Even after having endured the comments of "you must have really bad diabetes then" (a non diabetic) and "you must have been f'ing it up some how" (another type 1 - charming!) i would say everyone should be given pumps and people should be better educated about their existence, if its proven to improve control and, more importantly in my opinion, improve quality of life then money SHOULD NOT be an obstacle for any one.
Cant help in your particular situation except to say good luck. But youre doing the best thing in researching your personal case and going armed with all you can!
I would say though, if you do get it, be prepare for some hard work and lots of tme thinking about your day to day management! It really is like starting from scratch 🙂
Good luck x
aymes
Senior Member
- Relationship to Diabetes
- Type 1
I can't help I'm afraid but really interested to read the responses, I'm also next seeing the consultant in September and plan to start my campaign for a pump!
When i was trying to get a pump for my son i contacted the following web site and communicated with John Davis (himself a pumper) and he gave me all the ammunition i needed - however the rules for children and adults are different.I havent read all the adult criteria - but i hope this helps!
If you suffer from hypos - then i think you qualify if your consultant agrees.
www.input.me.uk
Bev
If you suffer from hypos - then i think you qualify if your consultant agrees.
www.input.me.uk
Bev
sofaraway
Senior Member
Will be interested to hear how you get on. If you have a good A1c then you probably need to look at the hypo's angle. If you can show that you have hypo's that are detrimental or cause you anxiety then you can fit the guidelines that way. I think it depends on your consultant, if your clinic is very pro-pump then it might not be too hard.
I'm someone else who doesn't qualify for a pump even though I would like one.
I'm someone else who doesn't qualify for a pump even though I would like one.
Hi
My son did not qualify for a pump for the first 12 months of his diabetes because his control was so good and he had perfect hba1c results. He/we really wanted one but were told that sadly there was no point in applying as it would not be accepted as we did not meet the criteria.
Unfortunately (or 'fortunately' as i now see it! At the time I did not see it as fortunate as it was a difficult and emotional few months for us all) he developed a needle phobia and had to have councilling sessions arranged through his dsn. These sessiones did not help, even though he co-operated fully. Also, because of the phobia, he would only inject into the same certain areas and lumps developed. Because he was injecting into lumps, the inulsin was not getting through properley so his readings started to be too high too regularly. His hba1c went from 6.3 to 7.5 then to 8.? (sorry can't remember the last digit off hand now).
So it was then decided a pump would definately help him and his application was accepted. He started pumping last Tuesday and we have not looked back since. So far so good! (No, make that - so far so excellent!).
Good luck with your application and let us know how you get on. 🙂🙂🙂
My son did not qualify for a pump for the first 12 months of his diabetes because his control was so good and he had perfect hba1c results. He/we really wanted one but were told that sadly there was no point in applying as it would not be accepted as we did not meet the criteria.
Unfortunately (or 'fortunately' as i now see it! At the time I did not see it as fortunate as it was a difficult and emotional few months for us all) he developed a needle phobia and had to have councilling sessions arranged through his dsn. These sessiones did not help, even though he co-operated fully. Also, because of the phobia, he would only inject into the same certain areas and lumps developed. Because he was injecting into lumps, the inulsin was not getting through properley so his readings started to be too high too regularly. His hba1c went from 6.3 to 7.5 then to 8.? (sorry can't remember the last digit off hand now).
So it was then decided a pump would definately help him and his application was accepted. He started pumping last Tuesday and we have not looked back since. So far so good! (No, make that - so far so excellent!).
Good luck with your application and let us know how you get on. 🙂🙂🙂
tracey w
Well-Known Member
- Relationship to Diabetes
- Type 1
Its a difficult one EmmaLou, originally i fitted criterea, had very understanding consultant, applied for funding, got it, did dafne, scores on the doors improved and was told no longer fit criteria, anyway long story think finally getting pump but wont believe it properly until i actually see it. Been a struggle and very emtional at times for me.
Firstly you need a very, cant stress that enough understanding consultant, if you have no joy with this one then change until you find a good one, you have a right to see whoever and at which ever hospital you choose, thats the first hurdle basically if the consultant applies for funding it cant be refused, however politically you have to show you fit the criteria before you will get it. Make sure you do is all i can say, your hba1c must be lower than 8, so you need to look at hypos, hypo unawareness? erratic levels, swings high and low, how all this afferct your lifestyle and emotions etc, record everything, carb count to the point your life depends on it and take all your records, be positve and motivated to want a pump, just wanting one is not enough. hope this helps, good luck 🙂
sofaraway
Senior Member
I do wonder why they offer people pumps before teaching carb counting, I've even met people on pumps who don't really know how to carb count. It's a difficult one with the guidelines, they rule out people who have worked really hard to manage their diabetes who have a good understanding and could really use a pump.
I guess when talking about money, you put someone with an A1c of 15 on a pump, you are going to get a reducation in A1c. Put someone with an A1C of 6 on a pump you might not get any reducation, but quality of life, flexibility, stability of blood sugars are less measurable things.
I guess when talking about money, you put someone with an A1c of 15 on a pump, you are going to get a reducation in A1c. Put someone with an A1C of 6 on a pump you might not get any reducation, but quality of life, flexibility, stability of blood sugars are less measurable things.
Nikki,
Your spot on! You cannot measure the feeling of happiness against how much it costs! If someone constantly feels stressed using injections and feels perhaps that it is holding them back because, for example, it stops them eating out or participating in social events, then that is no quality of life.
I do understand that pumps cost the NHS a fair amount of money. But if someone were to go on and experience mental health problems (and perhaps need counselling) as a direct result of being made to use a regime they are not comfortable with, then it is false economy in my view. In any case, the speaker at the DUK weekend said that long term it works out cheaper to have a pump than it is for injections. I think he was referring the the fact that mostly when people are on pumps they need less intervention from medical staff because once they have their levels right - they are more stable than perhaps someone on injections - which we know is less predictable due to the fact that you just cant get the accuracy that you can on a pump. (thats not to say that people on mdi cant have great control - its just a bit harder!).🙂Bev
Your spot on! You cannot measure the feeling of happiness against how much it costs! If someone constantly feels stressed using injections and feels perhaps that it is holding them back because, for example, it stops them eating out or participating in social events, then that is no quality of life.
I do understand that pumps cost the NHS a fair amount of money. But if someone were to go on and experience mental health problems (and perhaps need counselling) as a direct result of being made to use a regime they are not comfortable with, then it is false economy in my view. In any case, the speaker at the DUK weekend said that long term it works out cheaper to have a pump than it is for injections. I think he was referring the the fact that mostly when people are on pumps they need less intervention from medical staff because once they have their levels right - they are more stable than perhaps someone on injections - which we know is less predictable due to the fact that you just cant get the accuracy that you can on a pump. (thats not to say that people on mdi cant have great control - its just a bit harder!).🙂Bev
Northerner
Admin (Retired)
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- Type 1
Cost is always tricky when looking at how the NHS should allocate money. To me, it is much more wasteful of resources to treat the thousand upon thousand of weekend drunken brawlers, many of whom don't give a monkey's about looking after themselves, than to provide life-enhancing equipment to people who have clearly demontrated a desire to take good care of themselves. (That was a long sentence!😱)
Charge the drunks for treatment, I say! You'd either see less of them or the NHS would spend less on them. We get charged by dentists and opticians, why shouldn't we have to pay for stupidity?
I think if a person shows sufficient motivation then a pump should be made available. I think it is a very good point that bev makes about less intervention, I wonder if there are any studies available to compare?
tracey w
Well-Known Member
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- Type 1
that is your opinion and of course you are entitled to it. But i believe i deserve the best treatment and equipment available to me, I have worked all my life and pay taxes etc. this happens to be the belief of my nurses too actually. I didnt ask for diabetes but i have it and i try to look after myself the best i can and therefore i will change needles every time, test whenever i want to and have a pump if its offered, i deserve it
Less intervention and fewer complications, if all goes the way things usually do, on the pump. Better control, better quality of life -- and costing the NHS *less* in the long run as a result.
Re not being able to carb count: it *is* difficult to imagine, isn't it, and be on a pump. However, I do think many people learn to 'feel' it out, and somehow it all works.
Part of the reason we got the pump so quickly was because we were so motivated. We asked to carb count, we worked hard...and still levels were all over the place. The consultant quickly saw that it would benefit my son in numerous ways -- and that he could handle it -- and put forward the application.
Levels still *feel* all over the place, but actually they aren't. The quality of life change is immeasurable. Depression is a clear possibility with the management of diabetes, as we all know. The pump doesn't make this possibility go away, but the satisfaction that comes from seeing the effect of all your effort *must* mediate the difficulties of management, and the consequent 'downs'...
So it's what others say too: frequency and nature of hypos, and your own state of mind and how you are managing, how you would anticipate a pump helping your life. Know your stuff.
Re not being able to carb count: it *is* difficult to imagine, isn't it, and be on a pump. However, I do think many people learn to 'feel' it out, and somehow it all works.
Part of the reason we got the pump so quickly was because we were so motivated. We asked to carb count, we worked hard...and still levels were all over the place. The consultant quickly saw that it would benefit my son in numerous ways -- and that he could handle it -- and put forward the application.
Levels still *feel* all over the place, but actually they aren't. The quality of life change is immeasurable. Depression is a clear possibility with the management of diabetes, as we all know. The pump doesn't make this possibility go away, but the satisfaction that comes from seeing the effect of all your effort *must* mediate the difficulties of management, and the consequent 'downs'...
So it's what others say too: frequency and nature of hypos, and your own state of mind and how you are managing, how you would anticipate a pump helping your life. Know your stuff.
I see what you mean copepod, if someone is doing fine on injections, they shouldnt be a priority. BUT if someone has to work really hard and go out of their way to get amazing levels every single day of their lives and a good hba1c then I think they should be top of the list along with the people who can't get good control.
I very much doubt I would have got a pump in the UK . My Hb A1c was only5.3% when I was offered it. My doc suggested it because of the flexibility it allowed for exercise. On basal bolus, the basal for a rest day was far too much for an active day. I didn't really have any anxiety caused by the hypos and they were easily remedied (hence I wouldn't fulful NICE criteria).
Now I can cut my basal down to a dribble or even suspend it for exercise. The result is my total daily insulin has gone down from an average 32 units to between 18 and 26 (depending on exercise and carbs), my HbA1c went up slightly to 5.6%.
Now I can cut my basal down to a dribble or even suspend it for exercise. The result is my total daily insulin has gone down from an average 32 units to between 18 and 26 (depending on exercise and carbs), my HbA1c went up slightly to 5.6%.
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Northerner
Admin (Retired)
- Relationship to Diabetes
- Type 1
Thanks for this Helen. It was the flexibility with exercise that I was discussing with my DSN. I feel I am severely limited in comparison to before diabetes in running, and the effects of a run can mess up my dosing for up to 40 hours afterwards - as you say, it's just not possible to adjust basal to compensate if you want to vary your exercise routine much. So, my routine is now nothing like it was, and as it was one of my greatest pleasures it does get me down that I can't enjoy it as I used to.
I have been told i am unable to learn to drive as i am having at least 10 hypos a month, so to me using the nice guidelines that has a signficant adverse affect on my quality of life. I also have problems injecting in my legs with lumps and also in my arms, struggle to do it in my bottom so my main area is my belly which cant really take 3 a day!
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