Recent Posts - DAFNE Online

Oct 25, 2015

Sarahjhobson 1 post

Topic: General Discussion / Newly graduated!

Hi claire. Hope ur getting on ok x

Oct 25, 2015

marke 681 posts

Topic: General Discussion / Newly graduated!

Hi, just replied to the course stuff on your other posting, but with regards to entries there is currently no expiration and they will be available as long as the site is. Although we have a large number of readings stored on the site, storage space is cheap and we have no reason to delete anything.If we ever got to the stage where we needed to delete anything we would give advanced warning and explain how to export the data from the site so you can keep copies of any data that is removed.
Posting levels on the site do go up and down depending on what is happening in the world of Diabetes. The release of the Freestyle Libre caused a fair bit of discussion and the sooner other similar meters appear the better. Nothing against the Libre its just getting the sensors that is a challenge. If you are interested in technology and Diabetes this is the must have device Smile

Oct 25, 2015

marke 681 posts

Topic: General Discussion / Dosage auto-calculation in apps

Hi Claire, sorry but its not worth complaining since the MHRA are a licensing authority. This basically means they are a non-elected public body that really don't care either way if you are upset that the feature has been removed. Their sole focus is patient safety and in their view because the 'dose calculation' relates to insulin that is a potentially lethal drug it has to be licensed,
The issue with licensing is continued funding, not just getting the initial license, I think ultimately we need to work with a drugs company to do this. This is also the case for the next DAFNE 'Project' and so our home is it might be included in that and get funded that way. We fully appreciate how annoying it is for people it is annoying to us too !
I agree with your comments about the app and the course, however its taken 3 or 4 years to even get the site and the app mentioned in the course so expanding the coverage of it will take a while, Perhaps the previously mentioned 'project' might change this as 'online' accessibility and support is a bigger feature of it. However since it has not started yet we may have to wait a while. Simon and I have been promoting the app to the DAFNE medical people at the last 2 annual conferences and did a presentation of it at Addenbrookes ( cambridge) at their open day so we promote it where we can.

Oct 24, 2015

Nat-Sav 15 posts

Topic: General Discussion / restaurants

There's a handy list of restaurants/cafÃ©s etc. at http://dafneonline.co.uk/csites. Smile

(It's under DAFNE Tools - Carb Counter - Carb Links.)

Oct 24, 2015

Claire007 4 posts

Topic: General Discussion / Dosage auto-calculation in apps

Well that's a shame! I only graduated yesterday so came straight on here then downloaded the App. I noticed the reviews complaining about the removal of this feature and had been trying to find out why as I presumed it was a licencing issue.
That aside, OMG the graphs! I luffs em! So useful to be able to see patterns. A calculator option would have been so useful, I'm not so good at maths and my ratio is likely to change to 3/4 of a unit to 1CP. ( newly diagnosed & honeymooning) To be honest, it fries my brain thinking about it.

I guess the key thing is,
Is it worth complaining to the MHRA along the lines of 'look how frigging complicated our lives are as it is, it's essentially a calculator, please let dafne on line re install it'
OR,
Will a complaint fall on deaf ears as there's no way round it other than to get the license? Therefore we need to try and raise cash/source funding?
Hmmmm,
I notice Simon is also a graduate of STH Smile

it would have been good if they'd shown some screen shots of the kind of data you can get from the App to encourage more graduates to use it.

Oct 24, 2015

alturn 78 posts

Topic: General Discussion / Newly graduated!

Welcome to the club Very Happy

My DSN's also did my course, which made a big difference to my control, and confidence to manage BG. Think it's excellent you got on the course so soon after diagnosis.
Usage of the forum varies, it does seem to be on a less active phase recently. But you can still use the forums to search for help, often someone has hit a similar issue.
Good luck.

Oct 24, 2015

Claire007 4 posts

Topic: General Discussion / Newly graduated!

Hello! I've just completed my DAFNE course and joined up. Thoroughly enjoyed the course, even though the DAFNE course leader is my DSN, I still learnt a lot. I've only been diagnosed 6 months, was carb counting from day one but found it Invaluable.
I love the on line diary & App! All the different graphs are so useful, I have been looking for something like this since diagnosis to no avail so huge thanks. I'm surprised that as part of the course, they don't actually show you this site and the data you can get from it, or at least some screen shots with personal details removed, I guess from the 7 on the course though, probably only me and one other person will want to use an on line version. How long do entires remain accessible?
The forum does seem rather quiet! Is that because nobody needs much support once they're applying the principals!? Laughing

Oct 23, 2015

sarahfergo 6 posts

Topic: General Discussion / restaurants

hi all just wondering if anyone has a list of restaurants that can actually supply the carbs in meals they cook in the north east? Very Happy

Oct 23, 2015

Davey54 8 posts

Topic: General Discussion / DAFNE and Insulin Pumps.

Hi Novorapidboi26,
I agree that all education is a good thing, having said that, I can't think of any good reason to do this course. I've been a Type 1 Diabetic for nearly 41yrs and, with the way things have changed and the introduction of technology over the years, you have to learn to keep up. I'm happy to learn, providing it's something new.
I also understand from some Healthcare Professionals that young teenage diabetics a reluctant listen and learn about their condition, treatment, technology etc. I find that difficult to understand or accept. Things are far better now than when I started at 16yrs old. They need to get a grip!!

Thanks For Your Reply
Davey54

Oct 22, 2015

Dyonisus 9 posts

Topic: General Discussion / No insulin for 2 months

Retina test results: small sign of diabetes due to poor management, my fault?
Thanks Boots and The Gore surgery!

Oct 22, 2015

Dyonisus 9 posts

Topic: Questions for HCPs / No insulin for 2 months

I just came back from my retina scan at Basildon Hospital. They have found a sign of diabetes, poor management, that will need monitored closer from now on.
Now, I have been unable to inject for the last 2 months,because neither Boots ot the Gore surgery could provide the insulin pens or the box of needles for the pens.
Today I've got 2 boxes of insulin.
I would like to explain to me why this has been allowed to happened.
Thank you

Oct 22, 2015

lucy1gus2 13 posts

Topic: Questions for HCPs / Polyols

Thanks

Oct 22, 2015

John Syer 19 posts

Topic: General Discussion / Dosage auto-calculation in apps

Yelekreb said:
Here' an ariticle with a summary from a lawyers perspective: http://www.whitecase.com/publications/article/mobile-health-apps-are-they-regulated-medical-device

Thanks for the article link Yelekreb.

This is great food for thought (working out the carb content is left as an exercise for the reader), now all we have to do is convince the Powers That Be that the QA calculation falls under the auspices of "basic arithmetic operations" and falls outside the medical device purview, although I fear that it is more likely "intended to provide additional information that contributes to diagnosis and/or treatment" and therefore within.

Oct 21, 2015

aprilp 4 posts

Topic: Questions for HCPs / Red spot on leg

Has any diabetic reading this had a little red patch on their leg which has grown bigger and formed a blister. I'm worried.

Oct 21, 2015

novorapidboi26 1,819 posts

Topic: Questions for HCPs / Polyols

the myfitness pal website stated that for each teaspoon of Xylitol there is 4g of carbs...

Oct 21, 2015

novorapidboi26 1,819 posts

Topic: General Discussion / DAFNE and Insulin Pumps.

All education is worth it in my opinion, but for a pump veteran like yourself, no, I cant see what information they could give you that would be new and useful..........

your already making your own adjustments to dose with a pump orientated approach to the DAFNE principles probably..........

can you think of anything.......?

Oct 21, 2015

Warwick 423 posts

Topic: General Discussion / Low Carb

I've recently lost my hypo awareness. I only found this out after wearing a CGM and sleeping through multiple hypos that my CGM picked up. It is probably safer to take a small amount of carbs, and then look at reducing your basal to avoid the situation happening too often. Obviously you don't want to add a lot of carbs back in if you can help it, but losing hypo awareness is a major pain right now.

Oct 20, 2015

Dyonisus 9 posts

Topic: General Discussion / No insulin for 2 months

I called yesterday to my surgery. I was told to phone in the eve.
I called today and the nurse told me that my insulin was ready.
Once there, I got the precription.
I was under the impression that were insulin pens.
I got frustrated because I was not felling well. I had a stomachache, my hips were in pain and lower back was giving me a hard time.
I thought should make an effort, is just 5 minutes away walking and did not have any for 2 months.
By the time I've returned realize there was only 1 type of insulin in the prescription.
I called again,told to come back to get the second item.
If I am lucky, will inject before the end of the week.
I have the prescription to go to any chemist, but We all know they keep a low supply.
Next Friday it will be 3 weeks since I had the test at hospital, why that it takes so long to get these results?
The GP will phone to tell me, at least I do not have to make an appointment.
In the meantime they are offered hundreds of pounds bonuses to stop refering patients to hospital. Just for doing their jobs, what a joke!

Oct 19, 2015

Dyonisus 9 posts

Topic: General Discussion / No insulin for 2 months

I have taken a fasting test more 2 weeks ago at Basildon Hospital.the nurse will not tell me the results because she is not qualified. Do really need to see the GP just to tell me my sugar levels are high or low. Have of the time they look on the Internet because they now very little on the subject.
The way I see it, they have lost the results as they have done in the past and will have to go back to hospital for another test.
I work really hard to see the day when my sugar levels are stable. Do I really deserve to be left in the dark due to incompetence?

Oct 19, 2015

Alan 49 284 posts

Topic: General Discussion / No insulin for 2 months

You urgently need to escalate this, Dyonisus, your blood-sugars must be sky-high - are you able to test or is that denied to you as well? Contact the Basildon Health Trust, or whatever they're called. You need to get this sorted ASAP.
You could also contact Diabetes UK on 0345 123 2399 - they might take this up with the health authority involved.

Oct 19, 2015

Dyonisus 9 posts

Topic: General Discussion / No insulin for 2 months

Thanks to Boots and Gore surgery in Basildon I have not been able to inject for 2 months.
When they provide the pen needles they say I can not get the pens, and vice versa!
All I get is excuses from both parties.
They will not give a box that cost Â£20 (Â£8.00on Ebay), just to risk costly complications that could be easy avoidable if people did their jobs correctly
God help them if I have to be rushed to hospital!

Oct 17, 2015

Pat N 13 posts

Topic: General Discussion / Dosage auto-calculation in apps

Hi Simon & Marke,

Very disappointed that you have had to remove the Dosage auto-calculation from the DAFNE App. I found this feature very helpful in stopping my calculation mistakes. Evil or Very Mad

We will be told we can only have straight Bananas next...Oh yes they did that already.
I still think your app is awesome but wish I had not updated and lost this feature.
Could a stand alone calculator be developed and used? Just a thought.
Please don't let the negative comments get you down, you are greatly appreciated.

Many Thanks,

Pat.

Oct 25, 2015 Sarahjhobson 1 post	Topic: General Discussion / Newly graduated! Hi claire. Hope ur getting on ok x

Oct 25, 2015 marke 681 posts	Topic: General Discussion / Newly graduated! Hi, just replied to the course stuff on your other posting, but with regards to entries there is currently no expiration and they will be available as long as the site is. Although we have a large number of readings stored on the site, storage space is cheap and we have no reason to delete anything.If we ever got to the stage where we needed to delete anything we would give advanced warning and explain how to export the data from the site so you can keep copies of any data that is removed. Posting levels on the site do go up and down depending on what is happening in the world of Diabetes. The release of the Freestyle Libre caused a fair bit of discussion and the sooner other similar meters appear the better. Nothing against the Libre its just getting the sensors that is a challenge. If you are interested in technology and Diabetes this is the must have device

Oct 25, 2015 marke 681 posts	Topic: General Discussion / Dosage auto-calculation in apps Hi Claire, sorry but its not worth complaining since the MHRA are a licensing authority. This basically means they are a non-elected public body that really don't care either way if you are upset that the feature has been removed. Their sole focus is patient safety and in their view because the 'dose calculation' relates to insulin that is a potentially lethal drug it has to be licensed, The issue with licensing is continued funding, not just getting the initial license, I think ultimately we need to work with a drugs company to do this. This is also the case for the next DAFNE 'Project' and so our home is it might be included in that and get funded that way. We fully appreciate how annoying it is for people it is annoying to us too ! I agree with your comments about the app and the course, however its taken 3 or 4 years to even get the site and the app mentioned in the course so expanding the coverage of it will take a while, Perhaps the previously mentioned 'project' might change this as 'online' accessibility and support is a bigger feature of it. However since it has not started yet we may have to wait a while. Simon and I have been promoting the app to the DAFNE medical people at the last 2 annual conferences and did a presentation of it at Addenbrookes ( cambridge) at their open day so we promote it where we can.

Oct 24, 2015 Nat-Sav 15 posts	Topic: General Discussion / restaurants There's a handy list of restaurants/cafÃ©s etc. at http://dafneonline.co.uk/csites. (It's under DAFNE Tools - Carb Counter - Carb Links.)

Oct 24, 2015 Claire007 4 posts	Topic: General Discussion / Dosage auto-calculation in apps Well that's a shame! I only graduated yesterday so came straight on here then downloaded the App. I noticed the reviews complaining about the removal of this feature and had been trying to find out why as I presumed it was a licencing issue. That aside, OMG the graphs! I luffs em! So useful to be able to see patterns. A calculator option would have been so useful, I'm not so good at maths and my ratio is likely to change to 3/4 of a unit to 1CP. ( newly diagnosed & honeymooning) To be honest, it fries my brain thinking about it. I guess the key thing is, Is it worth complaining to the MHRA along the lines of 'look how frigging complicated our lives are as it is, it's essentially a calculator, please let dafne on line re install it' OR, Will a complaint fall on deaf ears as there's no way round it other than to get the license? Therefore we need to try and raise cash/source funding? Hmmmm, I notice Simon is also a graduate of STH it would have been good if they'd shown some screen shots of the kind of data you can get from the App to encourage more graduates to use it.

Oct 24, 2015 alturn 78 posts	Topic: General Discussion / Newly graduated! Welcome to the club My DSN's also did my course, which made a big difference to my control, and confidence to manage BG. Think it's excellent you got on the course so soon after diagnosis. Usage of the forum varies, it does seem to be on a less active phase recently. But you can still use the forums to search for help, often someone has hit a similar issue. Good luck.

Oct 24, 2015 Claire007 4 posts	Topic: General Discussion / Newly graduated! Hello! I've just completed my DAFNE course and joined up. Thoroughly enjoyed the course, even though the DAFNE course leader is my DSN, I still learnt a lot. I've only been diagnosed 6 months, was carb counting from day one but found it Invaluable. I love the on line diary & App! All the different graphs are so useful, I have been looking for something like this since diagnosis to no avail so huge thanks. I'm surprised that as part of the course, they don't actually show you this site and the data you can get from it, or at least some screen shots with personal details removed, I guess from the 7 on the course though, probably only me and one other person will want to use an on line version. How long do entires remain accessible? The forum does seem rather quiet! Is that because nobody needs much support once they're applying the principals!?

Oct 23, 2015 sarahfergo 6 posts	Topic: General Discussion / restaurants hi all just wondering if anyone has a list of restaurants that can actually supply the carbs in meals they cook in the north east?

Oct 23, 2015 Davey54 8 posts	Topic: General Discussion / DAFNE and Insulin Pumps. Hi Novorapidboi26, I agree that all education is a good thing, having said that, I can't think of any good reason to do this course. I've been a Type 1 Diabetic for nearly 41yrs and, with the way things have changed and the introduction of technology over the years, you have to learn to keep up. I'm happy to learn, providing it's something new. I also understand from some Healthcare Professionals that young teenage diabetics a reluctant listen and learn about their condition, treatment, technology etc. I find that difficult to understand or accept. Things are far better now than when I started at 16yrs old. They need to get a grip!! Thanks For Your Reply Davey54

Oct 22, 2015 Dyonisus 9 posts	Topic: General Discussion / No insulin for 2 months Retina test results: small sign of diabetes due to poor management, my fault? Thanks Boots and The Gore surgery!

Oct 22, 2015 Dyonisus 9 posts	Topic: Questions for HCPs / No insulin for 2 months I just came back from my retina scan at Basildon Hospital. They have found a sign of diabetes, poor management, that will need monitored closer from now on. Now, I have been unable to inject for the last 2 months,because neither Boots ot the Gore surgery could provide the insulin pens or the box of needles for the pens. Today I've got 2 boxes of insulin. I would like to explain to me why this has been allowed to happened. Thank you

Oct 22, 2015 lucy1gus2 13 posts	Topic: Questions for HCPs / Polyols Thanks

Oct 22, 2015 John Syer 19 posts	Topic: General Discussion / Dosage auto-calculation in apps Yelekreb said: Here' an ariticle with a summary from a lawyers perspective: http://www.whitecase.com/publications/article/mobile-health-apps-are-they-regulated-medical-device Thanks for the article link Yelekreb. This is great food for thought (working out the carb content is left as an exercise for the reader), now all we have to do is convince the Powers That Be that the QA calculation falls under the auspices of "basic arithmetic operations" and falls outside the medical device purview, although I fear that it is more likely "intended to provide additional information that contributes to diagnosis and/or treatment" and therefore within.

Oct 21, 2015 aprilp 4 posts	Topic: Questions for HCPs / Red spot on leg Has any diabetic reading this had a little red patch on their leg which has grown bigger and formed a blister. I'm worried.

Oct 21, 2015 novorapidboi26 1,819 posts	Topic: Questions for HCPs / Polyols the myfitness pal website stated that for each teaspoon of Xylitol there is 4g of carbs...

Oct 21, 2015 novorapidboi26 1,819 posts	Topic: General Discussion / DAFNE and Insulin Pumps. All education is worth it in my opinion, but for a pump veteran like yourself, no, I cant see what information they could give you that would be new and useful.......... your already making your own adjustments to dose with a pump orientated approach to the DAFNE principles probably.......... can you think of anything.......?

Oct 21, 2015 Warwick 423 posts	Topic: General Discussion / Low Carb I've recently lost my hypo awareness. I only found this out after wearing a CGM and sleeping through multiple hypos that my CGM picked up. It is probably safer to take a small amount of carbs, and then look at reducing your basal to avoid the situation happening too often. Obviously you don't want to add a lot of carbs back in if you can help it, but losing hypo awareness is a major pain right now.

Oct 20, 2015 Dyonisus 9 posts	Topic: General Discussion / No insulin for 2 months I called yesterday to my surgery. I was told to phone in the eve. I called today and the nurse told me that my insulin was ready. Once there, I got the precription. I was under the impression that were insulin pens. I got frustrated because I was not felling well. I had a stomachache, my hips were in pain and lower back was giving me a hard time. I thought should make an effort, is just 5 minutes away walking and did not have any for 2 months. By the time I've returned realize there was only 1 type of insulin in the prescription. I called again,told to come back to get the second item. If I am lucky, will inject before the end of the week. I have the prescription to go to any chemist, but We all know they keep a low supply. Next Friday it will be 3 weeks since I had the test at hospital, why that it takes so long to get these results? The GP will phone to tell me, at least I do not have to make an appointment. In the meantime they are offered hundreds of pounds bonuses to stop refering patients to hospital. Just for doing their jobs, what a joke!

Oct 19, 2015 Dyonisus 9 posts	Topic: General Discussion / No insulin for 2 months I have taken a fasting test more 2 weeks ago at Basildon Hospital.the nurse will not tell me the results because she is not qualified. Do really need to see the GP just to tell me my sugar levels are high or low. Have of the time they look on the Internet because they now very little on the subject. The way I see it, they have lost the results as they have done in the past and will have to go back to hospital for another test. I work really hard to see the day when my sugar levels are stable. Do I really deserve to be left in the dark due to incompetence?

Oct 19, 2015 Alan 49 284 posts	Topic: General Discussion / No insulin for 2 months You urgently need to escalate this, Dyonisus, your blood-sugars must be sky-high - are you able to test or is that denied to you as well? Contact the Basildon Health Trust, or whatever they're called. You need to get this sorted ASAP. You could also contact Diabetes UK on 0345 123 2399 - they might take this up with the health authority involved.

Oct 19, 2015 Dyonisus 9 posts	Topic: General Discussion / No insulin for 2 months Thanks to Boots and Gore surgery in Basildon I have not been able to inject for 2 months. When they provide the pen needles they say I can not get the pens, and vice versa! All I get is excuses from both parties. They will not give a box that cost Â£20 (Â£8.00on Ebay), just to risk costly complications that could be easy avoidable if people did their jobs correctly God help them if I have to be rushed to hospital!

Oct 17, 2015 Pat N 13 posts	Topic: General Discussion / Dosage auto-calculation in apps Hi Simon & Marke, Very disappointed that you have had to remove the Dosage auto-calculation from the DAFNE App. I found this feature very helpful in stopping my calculation mistakes. We will be told we can only have straight Bananas next...Oh yes they did that already. I still think your app is awesome but wish I had not updated and lost this feature. Could a stand alone calculator be developed and used? Just a thought. Please don't let the negative comments get you down, you are greatly appreciated. Many Thanks, Pat.