Recent Posts - DAFNE Online

Apr 27, 2015

marke 655 posts

Topic: General Discussion / DiAthlete - an inspiration

On Saturday we did a DAFNE Online presentation at Addenbrooke's Hospital Cambridge for their patient day. However we were just the warm up act for the next speaker who was billed as the 'inspirational speaker'. I must admit to being a bit dubious when I saw this on the agenda, but no they were right Shocked

. The speaker was Gavin Griffiths who is also known as diAthlete and his story should be an inspiration to us all. He was diagnosed as Type 1 at 8 years old and like most of us spent the next 8-9 years being told what he could not do and got increasingly frustrated by this. Unlike most of us, he decided he was going to prove all these people wrong. His first way of doing this was to run 29 miles in 3 hours for charity. He then just took on more and more challenging tasks. Probably the biggest of which was to run from John O'Groats to Lands End, 30 miles for 30 days. As he said to us, Eddie Izzard does it and the whole of the UK media are there, a Type 1 diabetic does it and hardly anyone cares ( not even the national Diabetes Charity, but lets not go there). He has plans for bigger challenges yet and listening and chatting to him just shows you what you can achieve if you DON'T let all those people who tell you Type 1 limits you !! Respect !

Please check out his website http://www.diathlete.org and look out for him. One of the things we chatted about was the medical exemption card fiasco and he is fighting the fines made for not having a valid card. He was one of those fined for not having one despite moving from juvenile care ( where you don't need one) to adult care and never being told he actually needed one. He has got the fine refunded for people and is now fighting to get back the cost of the prescriptions that he should not have had to pay for. As with his running challenges, he is not letting people discriminate against him just because he is T1 !! Respect Again.

The only bad thing I can say about him, is his life's ambition was to play for Crystal Palace, which just proves no one is perfect Wink

Apr 27, 2015

sawestall27 2 posts

Topic: Carbohydrate Counting / Pineapple

I find if I eat only fruit salad for lunch, I only need half the insulin calculated for the number of carbs eaten.

Apr 26, 2015

Simon 574 posts

Topic: General Discussion / 15 Years of DAFNE

2017 will mark 15 years since the DAFNE course was first rolled out. Lead Educator Sally Woolgar has asked us all for help in publicising this significant event.

Firstly, if anyone works in the media and would be willing to collaborate with us to work up an awareness/publicity campaign then please get in touch with Sally directly via email.

Secondly, if there are any members who would be willing to contribute stories on
1. how DAFNE has helped them manage a particular situation â€“ e.g. sport/work/pregnancy/illness/anything else
2. continues to help manage everyday life
3. the difference 5 days makes â€“ life before and after DAFNE.
4. how DAFNE online helps e.g. the chat room/shared experiences and support

Our idea is to compile a portfolio of peoples stories and information about the programme that can be sent to media outlets newspapers, magazines etc. to try and get as many stories in the media as we can. The greater variety of stories we have the better, short or long. Sometimes we think we are not extra ordinary enough to interest others but that isnâ€™t the case, people are interested in other people, not really in dry research data. I would also like to share the stories across the educator networks, the NHS can be a difficult place to work, we all need some good news to remind us why we do what we do.

Please share your stories here or directly by emailing them to Sally

Apr 26, 2015

Warwick 434 posts

Topic: Questions ? / Question

Hmmm, I only just downloaded the app this afternoon so I'm not sure how that works. I guess the readings have to be in the web site to be displayed, but not sure if there is a way of uploading them from the app or whether they stay local on the device. Just to confirm, are you using the correct format - DDMMYY? So 260415 for today for example?

Apr 26, 2015

Sarah M 4 posts

Topic: Questions ? / Question

No, I have them all on my app but when I ask it to update onto the site it just says there is no readings

Apr 26, 2015

Warwick 434 posts

Topic: Questions ? / Question

Do you get an error message at all?

Apr 26, 2015

Sarah M 4 posts

Topic: Questions ? / Question

Can't seem to add them ðŸ˜£

Apr 26, 2015

Monique 2 posts

Topic: General Discussion / Carb petition

Hello everyone,

I've seen on a few sites petitions to make hypo sized bottles of lucozade. And it got me thinking how much easier would it be for us all if takeout menus,mcds ect displayed the amount of carbs next to an item?? I know a lot of places now display calories. Has anyone seen a petition for this or now how to go about starting one?? thankyou

Apr 26, 2015

Warwick 434 posts

Topic: Questions ? / Question

Are you able to share your diary with this forum? Just use the "Include my Blood Glucose Diary entries between..." fields below the "Post Reply" button.

if your BGs when you wake are within 1.5 mmol/L of where they were before bed, then BI is probably within target, and the culprit is likely to be the QA ratios as you mention. But if they differ largely, then BI adjustment may be required.

Apr 26, 2015

Sarah M 4 posts

Topic: Questions ? / Question

Still happening, now trying the ratio adjustment

Apr 26, 2015

Warwick 434 posts

Topic: Questions ? / Question

Hi Sarah,

It is unlikely to be the BI increase that has done this. It could be a one-off random result, your body fighting an infection, menstruation, stress...

Is it still happening or was it just an issue that particular day?

Apr 22, 2015

Sarah M 4 posts

Topic: Questions ? / Question

I have a question, I am currently on Levemir twice a day and novorapid three times a day, I have been pretty stable but running slightly high while adjusting to the ratios and background levels. So I was asked to up my morning background by 2 units to 22units, which I did now my levels have shot up! What's going on? Any ideas or help would great.... I'm totally puzzled, went from 9.8 this morning up to 16.8 but no ketones. Worked out I ate 5cp so injected 5+1 the 1 as a correction. And as I say I have shot up to 16.8 with no keytones Sad

Apr 21, 2015

Annette Bell 58 posts

Topic: DAFNE Online Mobile / iPhone 6

Ok, tried that & it worked thanks.

Apr 21, 2015

Simon 574 posts

Topic: DAFNE Online Mobile / iPhone 6

Hi Annette,

You are correct, this is a problem I discovered yesterday and will be working on fixing. You entries are being stored the diary view just doesn't refresh to show this. You can get them to display by going to your diary settings and changing your day end, then going to the diary page and they should be there. Note they only don't appear if you enter entries using the home page, entries from the diary tab itself should display.

Sorry for the inconvenience!

Apr 21, 2015

Annette Bell 58 posts

Topic: DAFNE Online Mobile / iPhone 6

Has there been an update over the weekend that would prevent my iPhone keeping entries? I have saved all my entries, &, when I look at my diary online they are all there, but all of Sunday 19th, Monday 20th and this morning's breakfast (Tuesday 21st) are missing on my iPhone app. I have tried several times to "download latest entries" by dragging the diary page down, but to no avail. None of my settings have changed. Any suggestions? (Today's lunchtime seems to be there - weird!) Confused

Apr 21, 2015

Annette Bell 58 posts

Topic: DAFNE Online Mobile / 1/2 units

To round the QA I just delete it & free type in whatever I want.

Apr 19, 2015

David Hales 11 posts

Topic: General Discussion / DAFNE to PUMP conversion

Sorry - I uploaded an incomplete record of today - here it is...

Apr 19, 2015

David Hales 11 posts

Topic: General Discussion / DAFNE to PUMP conversion

Thank you to everyone that replied. Much appreciated.
I am on a fairly low daily dose of insulin and any small error in estimating carbs has a significant effect on my BGs. Similarly, any additional activity has a big lowering of BGs. It's very difficult to get any stability or predictability. Just look at today's record - 14.4 before going for half an hour walking the dog and 2.7 when I got back. I didn't walk particularly fast!

Apr 19, 2015

David Hales 11 posts

Topic: General Discussion / DAFNE to PUMP conversion

Pepsi said:
Hi David
Cant help with your question, sorry , but have questions maybe you could help me with. I have been approved for a pump, but yet to choose one. Are you finding better control etc with the pump? Do you regret changing at all?

The pump gives me far better control. I have never heard of anyone giving a pump back! The small downside is managing the very fine tube - but you get used to this. An Omnipod doesn't have a tube, but has a smaller capacity and therefore has to be changed more often

Apr 19, 2015

Stuart_Wylie 1 post

Topic: General Discussion / washing hands ?

For 10 years before I did my DAFNE course, I never washed my hands before testing and there didn't seem to be a problem with this. But, before my DAFNE course, my blood sugar readings were all over the place anyway!!! Now I generally just rub my fingers under running water before testing. If there's no water, I use dia-wipes which I found through the DUK site. They are specifically made for this purpose! Here's a link: http://www.funkypumpers.com/dia-wipe/

Hope this helps Very Happy

Apr 19, 2015

Vickyp 135 posts

Topic: General Discussion / DAFNE to PUMP conversion

I went on the omnipod pump 3 months after finishing my dafne course. It was during the course that I became interested in a pump and looking at the choices chose the omnipod. My consultant said Medtronic as I could get a cgm that goes with it but I didn't want tubes so he agreed to get me omnipod.
I had 3hr training session from the ypsomed rep and my DSN, a saline filled pod for a weekend before going 'live'. I then had another session after 4weeks to ask further questions etc, and am in regular contact with consultant/DSN. It was the best decision I made, even tho there is little change to my hba1c (was 6.1 on MDI but had multiple daily hypos....still around 6.1 but with very few hypos if any some months....so better control!) Very Happy

Apr 19, 2015

Vickyp 135 posts

Topic: General Discussion / Pumps

I have had very few failures in the 22months I've been on the omnipod!

Apr 19, 2015

Peter 103 posts

Topic: General Discussion / DAFNE to PUMP conversion

There is a DAFNE Pump course, but that's only offered by a few DAFNE Clinics. I transferred to a pump in November last year and have found that the same principles still apply. I was given ~3 hours training on the operation of the pump (Omnipod in my case) by an ex-DSN from the supplier. The rest was left up to me and, with the number of options for changing settings, it certainly took time to get to the point where I felt in control.

Apr 19, 2015

Peter 103 posts

Topic: General Discussion / Pumps

I'd agree about the benefits of the Omnipod's tube free design and the flexibility that allows in where it is located. The problem is that it's not offered everywhere on the NHS. As with any device there are some cons (in particular the failure rate of the pods is higher than I'd expected) but overall with pros significantly outweigh that, certainly when compared to MDI and probably (although I have no personal experience) when compared to a non-patch pump.

Apr 17, 2015

Ben in the Stow 3 posts

Topic: General Discussion / Travel/time zones - help!

Try using the following site http://www.voyagemd.com/ to get a guideline (even a timeline!) - David Kerr also does another great site for managing exercise according to TI and CP:QA ratios which was recommended to me by my specialist. I've travelled many a long-haul flight between England and Australia (the country of my birth) and wish that there'd been something like this a lot earlier.

In any case, I think you're going to have a great trip! Good luck!

Apr 27, 2015 marke 655 posts	Topic: General Discussion / DiAthlete - an inspiration On Saturday we did a DAFNE Online presentation at Addenbrooke's Hospital Cambridge for their patient day. However we were just the warm up act for the next speaker who was billed as the 'inspirational speaker'. I must admit to being a bit dubious when I saw this on the agenda, but no they were right . The speaker was Gavin Griffiths who is also known as diAthlete and his story should be an inspiration to us all. He was diagnosed as Type 1 at 8 years old and like most of us spent the next 8-9 years being told what he could not do and got increasingly frustrated by this. Unlike most of us, he decided he was going to prove all these people wrong. His first way of doing this was to run 29 miles in 3 hours for charity. He then just took on more and more challenging tasks. Probably the biggest of which was to run from John O'Groats to Lands End, 30 miles for 30 days. As he said to us, Eddie Izzard does it and the whole of the UK media are there, a Type 1 diabetic does it and hardly anyone cares ( not even the national Diabetes Charity, but lets not go there). He has plans for bigger challenges yet and listening and chatting to him just shows you what you can achieve if you DON'T let all those people who tell you Type 1 limits you !! Respect ! Please check out his website http://www.diathlete.org and look out for him. One of the things we chatted about was the medical exemption card fiasco and he is fighting the fines made for not having a valid card. He was one of those fined for not having one despite moving from juvenile care ( where you don't need one) to adult care and never being told he actually needed one. He has got the fine refunded for people and is now fighting to get back the cost of the prescriptions that he should not have had to pay for. As with his running challenges, he is not letting people discriminate against him just because he is T1 !! Respect Again. The only bad thing I can say about him, is his life's ambition was to play for Crystal Palace, which just proves no one is perfect

Apr 27, 2015 sawestall27 2 posts	Topic: Carbohydrate Counting / Pineapple I find if I eat only fruit salad for lunch, I only need half the insulin calculated for the number of carbs eaten.

Apr 26, 2015 Simon 574 posts	Topic: General Discussion / 15 Years of DAFNE 2017 will mark 15 years since the DAFNE course was first rolled out. Lead Educator Sally Woolgar has asked us all for help in publicising this significant event. Firstly, if anyone works in the media and would be willing to collaborate with us to work up an awareness/publicity campaign then please get in touch with Sally directly via email. Secondly, if there are any members who would be willing to contribute stories on 1. how DAFNE has helped them manage a particular situation â€“ e.g. sport/work/pregnancy/illness/anything else 2. continues to help manage everyday life 3. the difference 5 days makes â€“ life before and after DAFNE. 4. how DAFNE online helps e.g. the chat room/shared experiences and support Our idea is to compile a portfolio of peoples stories and information about the programme that can be sent to media outlets newspapers, magazines etc. to try and get as many stories in the media as we can. The greater variety of stories we have the better, short or long. Sometimes we think we are not extra ordinary enough to interest others but that isnâ€™t the case, people are interested in other people, not really in dry research data. I would also like to share the stories across the educator networks, the NHS can be a difficult place to work, we all need some good news to remind us why we do what we do. Please share your stories here or directly by emailing them to Sally

Apr 26, 2015 Warwick 434 posts	Topic: Questions ? / Question Hmmm, I only just downloaded the app this afternoon so I'm not sure how that works. I guess the readings have to be in the web site to be displayed, but not sure if there is a way of uploading them from the app or whether they stay local on the device. Just to confirm, are you using the correct format - DDMMYY? So 260415 for today for example?

Apr 26, 2015 Sarah M 4 posts	Topic: Questions ? / Question No, I have them all on my app but when I ask it to update onto the site it just says there is no readings

Apr 26, 2015 Warwick 434 posts	Topic: Questions ? / Question Do you get an error message at all?

Apr 26, 2015 Sarah M 4 posts	Topic: Questions ? / Question Can't seem to add them ðŸ˜£

Apr 26, 2015 Monique 2 posts	Topic: General Discussion / Carb petition Hello everyone, I've seen on a few sites petitions to make hypo sized bottles of lucozade. And it got me thinking how much easier would it be for us all if takeout menus,mcds ect displayed the amount of carbs next to an item?? I know a lot of places now display calories. Has anyone seen a petition for this or now how to go about starting one?? thankyou

Apr 26, 2015 Warwick 434 posts	Topic: Questions ? / Question Are you able to share your diary with this forum? Just use the "Include my Blood Glucose Diary entries between..." fields below the "Post Reply" button. if your BGs when you wake are within 1.5 mmol/L of where they were before bed, then BI is probably within target, and the culprit is likely to be the QA ratios as you mention. But if they differ largely, then BI adjustment may be required.

Apr 26, 2015 Sarah M 4 posts	Topic: Questions ? / Question Still happening, now trying the ratio adjustment

Apr 26, 2015 Warwick 434 posts	Topic: Questions ? / Question Hi Sarah, It is unlikely to be the BI increase that has done this. It could be a one-off random result, your body fighting an infection, menstruation, stress... Is it still happening or was it just an issue that particular day?

Apr 22, 2015 Sarah M 4 posts	Topic: Questions ? / Question I have a question, I am currently on Levemir twice a day and novorapid three times a day, I have been pretty stable but running slightly high while adjusting to the ratios and background levels. So I was asked to up my morning background by 2 units to 22units, which I did now my levels have shot up! What's going on? Any ideas or help would great.... I'm totally puzzled, went from 9.8 this morning up to 16.8 but no ketones. Worked out I ate 5cp so injected 5+1 the 1 as a correction. And as I say I have shot up to 16.8 with no keytones

Apr 21, 2015 Annette Bell 58 posts	Topic: DAFNE Online Mobile / iPhone 6 Ok, tried that & it worked thanks.

Apr 21, 2015 Simon 574 posts	Topic: DAFNE Online Mobile / iPhone 6 Hi Annette, You are correct, this is a problem I discovered yesterday and will be working on fixing. You entries are being stored the diary view just doesn't refresh to show this. You can get them to display by going to your diary settings and changing your day end, then going to the diary page and they should be there. Note they only don't appear if you enter entries using the home page, entries from the diary tab itself should display. Sorry for the inconvenience!

Apr 21, 2015 Annette Bell 58 posts	Topic: DAFNE Online Mobile / iPhone 6 Has there been an update over the weekend that would prevent my iPhone keeping entries? I have saved all my entries, &, when I look at my diary online they are all there, but all of Sunday 19th, Monday 20th and this morning's breakfast (Tuesday 21st) are missing on my iPhone app. I have tried several times to "download latest entries" by dragging the diary page down, but to no avail. None of my settings have changed. Any suggestions? (Today's lunchtime seems to be there - weird!)

Apr 21, 2015 Annette Bell 58 posts	Topic: DAFNE Online Mobile / 1/2 units To round the QA I just delete it & free type in whatever I want.

Apr 19, 2015 David Hales 11 posts	Topic: General Discussion / DAFNE to PUMP conversion Sorry - I uploaded an incomplete record of today - here it is...

Apr 19, 2015 David Hales 11 posts	Topic: General Discussion / DAFNE to PUMP conversion Thank you to everyone that replied. Much appreciated. I am on a fairly low daily dose of insulin and any small error in estimating carbs has a significant effect on my BGs. Similarly, any additional activity has a big lowering of BGs. It's very difficult to get any stability or predictability. Just look at today's record - 14.4 before going for half an hour walking the dog and 2.7 when I got back. I didn't walk particularly fast!

Apr 19, 2015 David Hales 11 posts	Topic: General Discussion / DAFNE to PUMP conversion Pepsi said: Hi David Cant help with your question, sorry , but have questions maybe you could help me with. I have been approved for a pump, but yet to choose one. Are you finding better control etc with the pump? Do you regret changing at all? The pump gives me far better control. I have never heard of anyone giving a pump back! The small downside is managing the very fine tube - but you get used to this. An Omnipod doesn't have a tube, but has a smaller capacity and therefore has to be changed more often

Apr 19, 2015 Stuart_Wylie 1 post	Topic: General Discussion / washing hands ? For 10 years before I did my DAFNE course, I never washed my hands before testing and there didn't seem to be a problem with this. But, before my DAFNE course, my blood sugar readings were all over the place anyway!!! Now I generally just rub my fingers under running water before testing. If there's no water, I use dia-wipes which I found through the DUK site. They are specifically made for this purpose! Here's a link: http://www.funkypumpers.com/dia-wipe/ Hope this helps

Apr 19, 2015 Vickyp 135 posts	Topic: General Discussion / DAFNE to PUMP conversion I went on the omnipod pump 3 months after finishing my dafne course. It was during the course that I became interested in a pump and looking at the choices chose the omnipod. My consultant said Medtronic as I could get a cgm that goes with it but I didn't want tubes so he agreed to get me omnipod. I had 3hr training session from the ypsomed rep and my DSN, a saline filled pod for a weekend before going 'live'. I then had another session after 4weeks to ask further questions etc, and am in regular contact with consultant/DSN. It was the best decision I made, even tho there is little change to my hba1c (was 6.1 on MDI but had multiple daily hypos....still around 6.1 but with very few hypos if any some months....so better control!)

Apr 19, 2015 Vickyp 135 posts	Topic: General Discussion / Pumps I have had very few failures in the 22months I've been on the omnipod!

Apr 19, 2015 Peter 103 posts	Topic: General Discussion / DAFNE to PUMP conversion There is a DAFNE Pump course, but that's only offered by a few DAFNE Clinics. I transferred to a pump in November last year and have found that the same principles still apply. I was given ~3 hours training on the operation of the pump (Omnipod in my case) by an ex-DSN from the supplier. The rest was left up to me and, with the number of options for changing settings, it certainly took time to get to the point where I felt in control.

Apr 19, 2015 Peter 103 posts	Topic: General Discussion / Pumps I'd agree about the benefits of the Omnipod's tube free design and the flexibility that allows in where it is located. The problem is that it's not offered everywhere on the NHS. As with any device there are some cons (in particular the failure rate of the pods is higher than I'd expected) but overall with pros significantly outweigh that, certainly when compared to MDI and probably (although I have no personal experience) when compared to a non-patch pump.

Apr 17, 2015 Ben in the Stow 3 posts	Topic: General Discussion / Travel/time zones - help! Try using the following site http://www.voyagemd.com/ to get a guideline (even a timeline!) - David Kerr also does another great site for managing exercise according to TI and CP:QA ratios which was recommended to me by my specialist. I've travelled many a long-haul flight between England and Australia (the country of my birth) and wish that there'd been something like this a lot earlier. In any case, I think you're going to have a great trip! Good luck!