Recent Posts - DAFNE Online

Jul 3, 2020

Lorna1984 3 posts

Topic: General Discussion / Quick Reference Guide?

I agree a small booklet or flashcards. I love that we have so much information to help us but sometimes you just want certain bits and not the whole workbook. Confused

Jul 3, 2020

Lorna1984 3 posts

Topic: General Discussion / Sick Day Rules

Interesting that they've posted those. I guess even if you haven't done DAFNE it's beneficial to know the sick day rules, so maybe that's why they've allowed everyone access to that info. Very Happy

Jul 3, 2020

Lorna1984 3 posts

Topic: General Discussion / Anyone out there ?

All OK here. I stayed home for 12 weeks as per advice from my local diabetes nurse and I'm still mainly at home with very occasional trips outside as and when needed. Luckily I can work from home.
Diabetes wise all is going well. Still following the DAFNE principles. Smile

Jul 1, 2020

SteveH 1 post

Topic: General Discussion / Covid 19

Hi,
In May, an NHS report highlighted the large percentage of diabetics in the Covid 19 death stats & subsequently the high risk for type 1 diabetics.
At a Downing St daily briefing, a member of the public asked if diabetics would now be added to the shielding list. Jenny Harries answer was that this was being reviewed.
Since then I have heard nothing about this review. Several daily papers printed articles about diabetics having to lockdown.
Does anybody have any information on this?

Jun 23, 2020

Neil_Johnson 7 posts

Topic: General Discussion / Anyone out there ?

Hi everyone,

I'm doing really well in the circumstances. I increased my basal insulin due to being off work. Have managed to keep my levels in target range for 75 - 80%.

Was very wary at the start of all of this, but I'm getting a bit more relaxed. I wear a mask and gloves when i go to shops or the chemist.

Had a review over the phone which was weird. Need to get bloods done soon. The Libreview is predicting a 51 on the HbA1c, that would be great.

Jun 22, 2020

Stephersjones 1 post

Topic: General Discussion / Anyone out there ?

Hi. I have been doing OK. I've had to change up my doses due to lockdown. But getting there. How is everyone else coping? X

Jun 2, 2020

sheffwoz 1 post

Topic: General Discussion / Anyone out there ?

marke said:
So I'm sure there must be loads of graduates out there , sat at home wondering what to do, maybe struggling with their BG's ? Well you are NOT the only ones , I have been getting a lot of people signing up saying they are trying to get on top of their diabetes or saying they were down to do a course that has been cancelled. So if that is you, reply to this thread or ask a question on the forums, I'm sure there are people out there who can help you and would be happy to do so. Me included

Alls good here in Sheffield. I have a telephone diabetic review next week. That will be different.

Jun 2, 2020

sjohno 37 posts

Topic: General Discussion / Anyone out there ?

marke said:
So 107 people have viewed this thread but no one has responded ? So everything is rosy with all you DAFNE people and no one has had any issues with being locked up for 8 weeks . DAFNE really msut be good

I wonder if this proves that DAFNE is effective with people that have attended the courses? Very Happy

Jun 1, 2020

michaelj 45 posts

Topic: General Discussion / Anyone out there ?

Not worrying too much about sugars at the moment, as I'm doing far more exercise than normal with a 2.5k walk most mornings and lots of decorating etc and jobs around the house, so much so that I'm having to watch out for hypos. I know we are supposed to be at high risk but personally I think if you take care and be sensible you are no more at risk than anyone else. Will be nice to get back to normal though (whatever that might be)

Jun 1, 2020

marke 681 posts

Topic: General Discussion / Anyone out there ?

So 107 people have viewed this thread but no one has responded ? So everything is rosy with all you DAFNE people and no one has had any issues with being locked up for 8 weeks . DAFNE really msut be good Confused

May 24, 2020

marke 681 posts

Topic: General Discussion / Sick Day Rules

As you may or may not know, we are not allowed to give people who have not done the DAFNE Course access to the course materials. This is at the insistence of the programme management team who own the copyright to all the course materials. However strangely they have started posting parts of the course on their newly updated site ! So since putting web links onto this site is not forbidden, I can give you links to these pages Very Happy

Standard Sick Day Rules

Pump Sick Day Rules

Not much granted, but hey its a start Very Happy

Also they have some FAQs

May 24, 2020

marke 681 posts

Topic: General Discussion / Anyone out there ?

So I'm sure there must be loads of graduates out there , sat at home wondering what to do, maybe struggling with their BG's ? Well you are NOT the only ones , I have been getting a lot of people signing up saying they are trying to get on top of their diabetes or saying they were down to do a course that has been cancelled. So if that is you, reply to this thread or ask a question on the forums, I'm sure there are people out there who can help you and would be happy to do so. Me included Very Happy

Apr 19, 2020

NottsKnots 10 posts

Topic: General Discussion / Whats inside a Freestyle Libre applicator?

In case anyone wondered...
https://youtu.be/V8ZKFSxlIfI

If you are careful, you can save space disposing of the used applicators.

Apr 3, 2020

AndyV 1 post

Topic: Questions for HCPs / High BG levels

Hi Holly
Only just joined so might not be offering anythign useful. One question: why the change from Tresiba to Levemir? I did the opposite about a year ago and have no complaints to make. If as Warwick points out your correction to doses is right to allow for higher bg then something else is happening. Either the other meds are screwing things up but is it worth querying the action of levemir versus tresiba if you had things going OK before the change??

Just a thought and more a rough guess than actual clinical knowledge!

Apr 1, 2020

JayBee 587 posts

Topic: DAFNE Online Mobile / Dafne app on android

It's been an issue for years. I moved to a different app with proper support in the end.

Feb 23, 2020

marke 681 posts

Topic: Site Development / Site Development

Hi, Sorry just catching up with this thread. I should also say immediately that this post represents my personal opinions rather than necessarily those of the site. I say this as I have a bad habit of getting myself in trouble Smile

So I totally agree with your points on the need to support the 51000 ex graduates. Sadly this IS appreciated by the DAFNE Programme team and has been raised repeatedly at Annual DAFNE conferences I have attended and by many graduates. However not a large amount of concrete action is taking placed to address this. There is now a DAFNE Plus version of the course being worked on that will supposedly have more after course support but I am not sure when that will happen. We have sort of lost contact with the development of this, to be honest I don't think they understand exactly how to do it. One of the biggest issues with it all is NHS politics. I'm sure its not just the UK that have these issues, but they are very wary of communicating directly on our site as are the HCP's and Dieticians that do the courses. They think that anything they say on here can be construed as medical advice and they could be sued if it was not used appropriately. Sadly the still live in the 1980's/1990's and think the internet doesn't really exist as an eveyday thing. The only way we will ever get effective after course support is if medical professionals are allowed to post on forums etc without the idea that they can be legally bound by what they say. Lets be honest the internet is FULL of people who think they are Diabetes experts, just like every other subject :-) I think we all learn to take anything we read with a degree of cynicism and want more than one suggestion before we do anything. We have tried many times to get more support for the site and although everyone 'wants' to help very little help actually comes from Medical Porfessionals. That's just the way it is at the moment.

Feb 16, 2020

torana 53 posts

Topic: Site Development / Site Development

Hi Simon,
Many thanks for your positive reply. Yes it’s imperative that there is communication between both websites. Well Done! It is obvious that the services DAFNE UK provides is in the hospitals. Its primary mission is not its website or the 51000 ex graduates on the outer. Links, online post education, clear information about our DAFNE online site, and rapport/communication between our two websites are imperative considering that we now know through current medical research that in the long term 90% of Type1 diabetics, including the 51000 ex graduates, are outside the normative range of HBA1C. The responsibility lies with DAFNE UK not only to conduct courses in hospitals but to support and further develop a community where ex grads feel they can get advice and assistance.
Basically, DAFNE UK needs to change it’s mission statement to incorporate and support the 51000 ex graduates, not just state 51000 Type1 diabetics have been through the courses. It is clearly not up with current medical research where 90% of Type1 diabetics are outside the normative ranges! There’s a real need for an update on their mission statement and website!

Feb 11, 2020

Neil_Johnson 7 posts

Topic: Site Development / Site Development

Thanks for the reply Simon. I was just thinking maybe some general pictures of people on the course or putting DAFNE into practice in their everyday lives, showing how worthwhile it has been. Thanks for the Facebook link, i have just requested to join. It didn't show up on a search as i entered DAFNE without the full stops.

Feb 11, 2020

Simon 578 posts

Topic: Site Development / Site Development

Hi Neil and Torana,

Thanks for your feedback - as you know we run this in our spare time so it sometimes takes a while to get around to making updates. We are also currently working with DAFNE central to make it more obvious that we are a graduate run and focused site, but equally would like to retain the DAFNE branding and more importantly access to updated DAFNE resources. There should be some updates on that coming soon.

I'm currently working on tidying up and improving the look and feel of the site so to your point about graphics or photos then let me know what specifically you'd like to see, as well as any other ideas for improvement to the site.

Finally there is a DAFNE Facebook Group which you can join too.

Simon

Feb 10, 2020

Neil_Johnson 7 posts

Topic: Site Development / Site Development

Hi Torana, thanks very much for your reply. Yes, i am surprised there is a lack of activity. It was presented to us during the course as being a place that we can come to share problems etc. I have joined Freestyle Libre groups on Facebook but the comments on there are mostly by people who haven't completed the DAFNE course, so they are unenlightened! I was also surprised that there isn't a DAFNE group on facebook, maybe having that could promote this site and forum more and reconnect graduates who have lost contact since the course?

Feb 10, 2020

torana 53 posts

Topic: Site Development / Site Development

Hi Neil,
I am very impressed by your enthusiasm and suggestions to make the DAFNE website more user friendly for everyone. We have had recently a number of new users interested in improving our site. Yes it is very sad the huge amount of ex DAFNE graduates who never comeback to our site and just disappear into the abyss. Suggestions to improve our site need to be taken seriously to minimise the loss of first timers who never reappear.
It would also be a wonderful opportunity at the start of the new year to invite all members to make positive comments and suggestions on how to improve the forum pages. Why not make this our major goal/outcome for 2020 with a major heading.? Another suggestion may be to improve the italics to modernise the site.

It has been stated beforehand that there is no relationship between DAFNE central, that is the DAFNE courses provided in hospitals, and the forum pages voluntarily run by yourselves. In fact, I find this surprising and implausible due to the fact the DAFNE logo is used by both entities yet there appears to be a lack of communication, funding etc between the two organisations. This is a terrible shame for the forum with the thousands of past users and past participants listed on your website yet the apparent lack of communication, coordination, contact or funding between DAFNE central and this forum. Something must be done to improve this site for the benefit of all members.

Feb 9, 2020

Neil_Johnson 7 posts

Topic: Site Development / Site Development

Hi Simon, the forum doesn't seem to be very active at the moment. Hopefully people can start to share their problems/achievements etc on here.

I think the main website could do with more graphics/photos.

Feb 9, 2020

Neil_Johnson 7 posts

Topic: General Discussion / Eating round of toast before bed

If you are eating the toast to help avoid the lows in bed then i definitely wouldn't take any QA insulin.

Feb 9, 2020

Neil_Johnson 7 posts

Topic: General Discussion / Eating round of toast before bed

Hi Chris, I've only just completed the DAFNE course. I wouldn't take any QA for less than 1.5 CP. What night time BI do you take?

Jul 3, 2020 Lorna1984 3 posts	Topic: General Discussion / Quick Reference Guide? I agree a small booklet or flashcards. I love that we have so much information to help us but sometimes you just want certain bits and not the whole workbook.

Jul 3, 2020 Lorna1984 3 posts	Topic: General Discussion / Sick Day Rules Interesting that they've posted those. I guess even if you haven't done DAFNE it's beneficial to know the sick day rules, so maybe that's why they've allowed everyone access to that info.

Jul 3, 2020 Lorna1984 3 posts	Topic: General Discussion / Anyone out there ? All OK here. I stayed home for 12 weeks as per advice from my local diabetes nurse and I'm still mainly at home with very occasional trips outside as and when needed. Luckily I can work from home. Diabetes wise all is going well. Still following the DAFNE principles.

Jul 1, 2020 SteveH 1 post	Topic: General Discussion / Covid 19 Hi, In May, an NHS report highlighted the large percentage of diabetics in the Covid 19 death stats & subsequently the high risk for type 1 diabetics. At a Downing St daily briefing, a member of the public asked if diabetics would now be added to the shielding list. Jenny Harries answer was that this was being reviewed. Since then I have heard nothing about this review. Several daily papers printed articles about diabetics having to lockdown. Does anybody have any information on this?

Jun 23, 2020 Neil_Johnson 7 posts	Topic: General Discussion / Anyone out there ? Hi everyone, I'm doing really well in the circumstances. I increased my basal insulin due to being off work. Have managed to keep my levels in target range for 75 - 80%. Was very wary at the start of all of this, but I'm getting a bit more relaxed. I wear a mask and gloves when i go to shops or the chemist. Had a review over the phone which was weird. Need to get bloods done soon. The Libreview is predicting a 51 on the HbA1c, that would be great.

Jun 22, 2020 Stephersjones 1 post	Topic: General Discussion / Anyone out there ? Hi. I have been doing OK. I've had to change up my doses due to lockdown. But getting there. How is everyone else coping? X

Jun 2, 2020 sheffwoz 1 post	Topic: General Discussion / Anyone out there ? marke said: So I'm sure there must be loads of graduates out there , sat at home wondering what to do, maybe struggling with their BG's ? Well you are NOT the only ones , I have been getting a lot of people signing up saying they are trying to get on top of their diabetes or saying they were down to do a course that has been cancelled. So if that is you, reply to this thread or ask a question on the forums, I'm sure there are people out there who can help you and would be happy to do so. Me included Alls good here in Sheffield. I have a telephone diabetic review next week. That will be different.

Jun 2, 2020 sjohno 37 posts	Topic: General Discussion / Anyone out there ? marke said: So 107 people have viewed this thread but no one has responded ? So everything is rosy with all you DAFNE people and no one has had any issues with being locked up for 8 weeks . DAFNE really msut be good I wonder if this proves that DAFNE is effective with people that have attended the courses?

Jun 1, 2020 michaelj 45 posts	Topic: General Discussion / Anyone out there ? Not worrying too much about sugars at the moment, as I'm doing far more exercise than normal with a 2.5k walk most mornings and lots of decorating etc and jobs around the house, so much so that I'm having to watch out for hypos. I know we are supposed to be at high risk but personally I think if you take care and be sensible you are no more at risk than anyone else. Will be nice to get back to normal though (whatever that might be)

Jun 1, 2020 marke 681 posts	Topic: General Discussion / Anyone out there ? So 107 people have viewed this thread but no one has responded ? So everything is rosy with all you DAFNE people and no one has had any issues with being locked up for 8 weeks . DAFNE really msut be good

May 24, 2020 marke 681 posts	Topic: General Discussion / Sick Day Rules As you may or may not know, we are not allowed to give people who have not done the DAFNE Course access to the course materials. This is at the insistence of the programme management team who own the copyright to all the course materials. However strangely they have started posting parts of the course on their newly updated site ! So since putting web links onto this site is not forbidden, I can give you links to these pages Standard Sick Day Rules Pump Sick Day Rules Not much granted, but hey its a start Also they have some FAQs

May 24, 2020 marke 681 posts	Topic: General Discussion / Anyone out there ? So I'm sure there must be loads of graduates out there , sat at home wondering what to do, maybe struggling with their BG's ? Well you are NOT the only ones , I have been getting a lot of people signing up saying they are trying to get on top of their diabetes or saying they were down to do a course that has been cancelled. So if that is you, reply to this thread or ask a question on the forums, I'm sure there are people out there who can help you and would be happy to do so. Me included

Apr 19, 2020 NottsKnots 10 posts	Topic: General Discussion / Whats inside a Freestyle Libre applicator? In case anyone wondered... https://youtu.be/V8ZKFSxlIfI If you are careful, you can save space disposing of the used applicators.

Apr 3, 2020 AndyV 1 post	Topic: Questions for HCPs / High BG levels Hi Holly Only just joined so might not be offering anythign useful. One question: why the change from Tresiba to Levemir? I did the opposite about a year ago and have no complaints to make. If as Warwick points out your correction to doses is right to allow for higher bg then something else is happening. Either the other meds are screwing things up but is it worth querying the action of levemir versus tresiba if you had things going OK before the change?? Just a thought and more a rough guess than actual clinical knowledge!

Apr 1, 2020 JayBee 587 posts	Topic: DAFNE Online Mobile / Dafne app on android It's been an issue for years. I moved to a different app with proper support in the end.

Feb 23, 2020 marke 681 posts	Topic: Site Development / Site Development Hi, Sorry just catching up with this thread. I should also say immediately that this post represents my personal opinions rather than necessarily those of the site. I say this as I have a bad habit of getting myself in trouble So I totally agree with your points on the need to support the 51000 ex graduates. Sadly this IS appreciated by the DAFNE Programme team and has been raised repeatedly at Annual DAFNE conferences I have attended and by many graduates. However not a large amount of concrete action is taking placed to address this. There is now a DAFNE Plus version of the course being worked on that will supposedly have more after course support but I am not sure when that will happen. We have sort of lost contact with the development of this, to be honest I don't think they understand exactly how to do it. One of the biggest issues with it all is NHS politics. I'm sure its not just the UK that have these issues, but they are very wary of communicating directly on our site as are the HCP's and Dieticians that do the courses. They think that anything they say on here can be construed as medical advice and they could be sued if it was not used appropriately. Sadly the still live in the 1980's/1990's and think the internet doesn't really exist as an eveyday thing. The only way we will ever get effective after course support is if medical professionals are allowed to post on forums etc without the idea that they can be legally bound by what they say. Lets be honest the internet is FULL of people who think they are Diabetes experts, just like every other subject :-) I think we all learn to take anything we read with a degree of cynicism and want more than one suggestion before we do anything. We have tried many times to get more support for the site and although everyone 'wants' to help very little help actually comes from Medical Porfessionals. That's just the way it is at the moment.

Feb 16, 2020 torana 53 posts	Topic: Site Development / Site Development Hi Simon, Many thanks for your positive reply. Yes it’s imperative that there is communication between both websites. Well Done! It is obvious that the services DAFNE UK provides is in the hospitals. Its primary mission is not its website or the 51000 ex graduates on the outer. Links, online post education, clear information about our DAFNE online site, and rapport/communication between our two websites are imperative considering that we now know through current medical research that in the long term 90% of Type1 diabetics, including the 51000 ex graduates, are outside the normative range of HBA1C. The responsibility lies with DAFNE UK not only to conduct courses in hospitals but to support and further develop a community where ex grads feel they can get advice and assistance. Basically, DAFNE UK needs to change it’s mission statement to incorporate and support the 51000 ex graduates, not just state 51000 Type1 diabetics have been through the courses. It is clearly not up with current medical research where 90% of Type1 diabetics are outside the normative ranges! There’s a real need for an update on their mission statement and website!

Feb 11, 2020 Neil_Johnson 7 posts	Topic: Site Development / Site Development Thanks for the reply Simon. I was just thinking maybe some general pictures of people on the course or putting DAFNE into practice in their everyday lives, showing how worthwhile it has been. Thanks for the Facebook link, i have just requested to join. It didn't show up on a search as i entered DAFNE without the full stops.

Feb 11, 2020 Simon 578 posts	Topic: Site Development / Site Development Hi Neil and Torana, Thanks for your feedback - as you know we run this in our spare time so it sometimes takes a while to get around to making updates. We are also currently working with DAFNE central to make it more obvious that we are a graduate run and focused site, but equally would like to retain the DAFNE branding and more importantly access to updated DAFNE resources. There should be some updates on that coming soon. I'm currently working on tidying up and improving the look and feel of the site so to your point about graphics or photos then let me know what specifically you'd like to see, as well as any other ideas for improvement to the site. Finally there is a DAFNE Facebook Group which you can join too. Simon

Feb 10, 2020 Neil_Johnson 7 posts	Topic: Site Development / Site Development Hi Torana, thanks very much for your reply. Yes, i am surprised there is a lack of activity. It was presented to us during the course as being a place that we can come to share problems etc. I have joined Freestyle Libre groups on Facebook but the comments on there are mostly by people who haven't completed the DAFNE course, so they are unenlightened! I was also surprised that there isn't a DAFNE group on facebook, maybe having that could promote this site and forum more and reconnect graduates who have lost contact since the course?

Feb 10, 2020 torana 53 posts	Topic: Site Development / Site Development Hi Neil, I am very impressed by your enthusiasm and suggestions to make the DAFNE website more user friendly for everyone. We have had recently a number of new users interested in improving our site. Yes it is very sad the huge amount of ex DAFNE graduates who never comeback to our site and just disappear into the abyss. Suggestions to improve our site need to be taken seriously to minimise the loss of first timers who never reappear. It would also be a wonderful opportunity at the start of the new year to invite all members to make positive comments and suggestions on how to improve the forum pages. Why not make this our major goal/outcome for 2020 with a major heading.? Another suggestion may be to improve the italics to modernise the site. It has been stated beforehand that there is no relationship between DAFNE central, that is the DAFNE courses provided in hospitals, and the forum pages voluntarily run by yourselves. In fact, I find this surprising and implausible due to the fact the DAFNE logo is used by both entities yet there appears to be a lack of communication, funding etc between the two organisations. This is a terrible shame for the forum with the thousands of past users and past participants listed on your website yet the apparent lack of communication, coordination, contact or funding between DAFNE central and this forum. Something must be done to improve this site for the benefit of all members.

Feb 9, 2020 Neil_Johnson 7 posts	Topic: Site Development / Site Development Hi Simon, the forum doesn't seem to be very active at the moment. Hopefully people can start to share their problems/achievements etc on here. I think the main website could do with more graphics/photos.

Feb 9, 2020 Neil_Johnson 7 posts	Topic: General Discussion / Eating round of toast before bed If you are eating the toast to help avoid the lows in bed then i definitely wouldn't take any QA insulin.

Feb 9, 2020 Neil_Johnson 7 posts	Topic: General Discussion / Eating round of toast before bed Hi Chris, I've only just completed the DAFNE course. I wouldn't take any QA for less than 1.5 CP. What night time BI do you take?