Recent Posts - DAFNE Online

Dec 31, 2019

marke 686 posts

Hi, temporarily changed until a formal update. We use a system called Ruby-on-Rails which is sort of a content management system but not exactly that. It will disappear in a formal update.

Dec 31, 2019

torana 53 posts

Topic: Site Development / E-Petitioln

Hi Whitaker,
I am very impressed by your enthusiasm and suggestions to make the DAFNE website more user friendly for everyone.
I believe many DAFNE users relate to your comments regarding outdated threads needing to be fixed up to make a relevant website. It’s great Marke’s comments to fix up the web pages in the new year. 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.
Firstly, you mention the problem with threads. I would like to again restate the amount of spam on this site that has been on the forum pages. This spam destroys forum communication and also leaves confusing deleted threads left on the page.
Secondly, the DAFNE front page should state unequivocally that there is no relationship between DAFNE central, that is the DAFNE that provides courses in hospitals, and the forum pages voluntarily run by Marke. In fact, I find this surprising and confusing 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 forum is a mirror to DAFNE run in the hospital, with thousands of users and past participants listed on your website yet it is baffling the apparent lack of communication, coordination, contact or funding between DAFNE central and this forum that seemingly runs on an oily rag.
Hoping everyone has a safe and healthy new year, 2020

Dec 29, 2019

Whitaker 4 posts

Topic: Site Development / E-Petitioln

Thanks Marke, that's all I was asking for. Having been in IT for 40+ years, I'm well aware of the problems, and if nobody points thingd out then they might never get fixed. Timely and relevant information is so important for websites, so Ilook forward to the revised page. If you have a content management system then it should be a simple change, but even in HTML it should be a dead simple text edit. Thanks for responding and Happy New Year. Very Happy

Dec 29, 2019

marke 686 posts

Topic: Site Development / E-Petitioln

Hi, sorry yes we DO intend to fix it, the problem is when you manage the site you miss the obvious things :-( We need to update the front page soon anyway so I will ensure it does get fixed then !!

Dec 29, 2019

marke 686 posts

Topic: Questions for HCPs / High BG levels

Hi, Would just like to echo torana's comments. I too was on Prednisolone for some time and it screwed my BG completely. It also caused my first ambulance call, that was when I came off them and no one told me to watch out for sharp drops in BG !! so watch out for that when you come off them. I found it hard to control my BG's when in Steroids because food would have a bigger more random effect on me i.e the size of portions would push up my BG's a lot more and I found it harder to get them back down. I agree you should be getting MORE help. I am surprised you are not getting it to be honest as I have found London hospitals have more resources and are able to do more with their patients. I think you should try speaking to them and see what help they can provide. MAaybe they could prescribe an abbott Libre sensor kit to help you monitor and manage your BG's more thoroughly when on Steroids. That is of course if YOU want to do that, we can only offer opinions its up to you what you do about it. I appreciate that not everyone likes hospitals or dealing with HCP's :-)

Dec 24, 2019

torana 53 posts

Topic: Questions for HCPs / High BG levels

Hi Holly, I empathise with your situation and the bg’s are certainly high. I have Crohn’s and diabetes so have been on prednisone a few times with insulin. It can be very difficult to manage by yourself so the nurse/doctor must take on some of the responsibility for the changes in your bg’s. One consultation certainly isn’t enough! I would ring the hospital straight away and explain these massive changes after being told to switch insulins. Also I would be concerned about your KETONES.. have you checked it? If not or you don’t have the strips it would be worthwhile to go to the doctors/hospital and explain what’s happening after the changes in medication and such high bg’s. Insulin diabetes is hard enough to manage without being thrown into the lions den and taking prednisone steroids. Please get help straight away so you can relax and enjoy the festive season.

Dec 19, 2019

Holly_hols 1 post

Topic: Questions for HCPs / High BG levels

2 weeks ago I did the DAFNE course and during the course I had changed from tresiba to levermir basal insulin, during the course my blood glucose were good levels and never went above 14. However since then as my diary shows, my BG have been high and I'm not sure what to do!
I am on prednisolone steroids and have been for 9months, I know this is affecting my BG but I had my bloods stable during the course with the diabetic nurses help.
Not sure if it's my body adjusting to the Levemir now or what but no matter what I try my blood glucose keeps running high and I would like some help if anyone could please.

Dec 9, 2019

EdwardR 5 posts

Topic: Site Development / E-Petitioln

Looks like a molehill out of a molehill to me.. and you could just fix the page

Dec 5, 2019

sjohno 37 posts

Topic: Site Development / E-Petitioln

Whitaker

I think you are making a mountain out of a molehill. 🤷‍♀️

Dec 5, 2019

Whitaker 4 posts

Topic: Site Development / E-Petitioln

Sarah, thanks for coming back, but I think that you've just underlined my point: The petition ended in November 2013, so why is the home page still asking people to sign it? Such out of date material should not be present. If the home page is so out of date and irrewlevant, then what does it say about the rest of the content? There is no invitation to explore, just an impression that the site is out of date and not maintained.

There doesn't seem to be much activity on the site, perhaps others have decided that it's all old stuff? Do we need a more active mopderator and admin team? There must be some positive and current news items that could replace an exhortation to sign a petition that closed seven years ago.

As a new user, I'm full of enthusiasm and want to see the site active and used; but cannot accept that material that is seven years out of date should be the first thing that new users see. It is not relevant and should be removed, hence making my post to refer to the admin team.

Dec 4, 2019

sjohno 37 posts

Topic: Site Development / E-Petitioln

Whitaker said:
Hi Sarah, who knows?* I can't follow the link, so I don't know where it would take me!

It's on the home page http://dafneonline.co.uk/ where this phrase is prominent:
Please sign the E-petition calling for Structured Education for ALL Diabetics at http://epetitions.direct.gov.uk/petitions/41345

The point is that there should not be out of date, irrelevant or broken links on the page. If the petition is closed then there should not be a message asking people to sign it. By all means have an article that says "We petitioned the Government..." or create a new petition, but do not have a hoime page that creates a poor impression.

Regards

Simon

*Yes, I can see that the petition number is the same, but that's not the point

E-Petition

By marke on December 03, 2012 21:55

The DAFNE User Action Group has raised a petition for central funding of a national structured education programme for diabetics (including DAFNE).
They are publicising this initiative from as many angles as possible, hence this news article. If enough votes are registered then a government debate will be
trigggered which it is hoped will result in some kind of programme to do what is suggested i.e National Structured Education programmes for Diabetes.
This is for ALL Diabetics not just Type 1's.
The link to the e-peittion is: http://epetitions.direct.gov.uk/petitions/41345

The statement was posted on the DAFNE website 03.12.2012 - 7 years ago. It's a very old message!

The petition ended 08.11.2013.

regards

Sarah

Dec 4, 2019

Whitaker 4 posts

Topic: Site Development / E-Petitioln

Hi Sarah, who knows?* I can't follow the link, so I don't know where it would take me!

It's on the home page http://dafneonline.co.uk/ where this phrase is prominent:
Please sign the E-petition calling for Structured Education for ALL Diabetics at http://epetitions.direct.gov.uk/petitions/41345

The point is that there should not be out of date, irrelevant or broken links on the page. If the petition is closed then there should not be a message asking people to sign it. By all means have an article that says "We petitioned the Government..." or create a new petition, but do not have a hoime page that creates a poor impression.

Regards

Simon

*Yes, I can see that the petition number is the same, but that's not the point Confused

Dec 4, 2019

sjohno 37 posts

Topic: Site Development / E-Petitioln

Whitaker said:
One for the Admin team: I've just graduated and joined this site. The first thing I read was a plea to sign the petition asking for structured education for all diabetics. I agree wholeheartedly and so tried to go to petition site. Unfortunately the link is broken, returning a 403 not satisfied error. Perhaps the team could check and amend the home page.

Whitaker, is your query regarding the below link:

https://petition.parliament.uk/archived/petitions/41345

If so the petition ended 08.11.2013 perhaps that's why you get a broken link.

regards

Sarah

Nov 27, 2019

Whitaker 4 posts

Topic: Site Development / E-Petitioln

One for the Admin team: I've just graduated and joined this site. The first thing I read was a plea to sign the petition asking for structured education for all diabetics. I agree wholeheartedly and so tried to go to petition site. Unfortunately the link is broken, returning a 403 not satisfied error. Perhaps the team could check and amend the home page.

Nov 24, 2019

alturn 78 posts

Topic: General Discussion / CT Scan & insulin

I am having a CT scan on Thu 28th at 09:00, which means restricted diet before the scan. I can have clear fluids (apple juice, water) or black tea in the four hours before the scan.

I take Novarapid (QA) before meals and Levemir (BI) am and pm.

As I won't be eating much, I will probably miss the morning QA and take half my BI at breakfast time. After the scan, I'll take the other half of the BI, along with QA and a snack, based on BG. This is based on instructions for another type of scan with more restrictions.

Has anybody any experience of CT scan and how did you manage your insulin?

Thanks,
J

Nov 20, 2019

EdwardR 5 posts

Topic: General Discussion / Bed wetting

outdoorsteve said:
Does anyone experience bed wetting in their sleep due to their diabetes.
I wet the bed during the night and when I went to bed I was 19.1at dinner. My blood glucose has always been erratic and now I feel embarrassed for wetting the bed.

I haven't had bed wetting but when diagnosed I was drinking ~8 liters per day and getting up every 2 hours or so -sounds like you are just not waking up. Is 19 a normal level for you? (what HA1C?)
Your GP can probably help with pads and such but if you are regularly at 19mmol/l that's a problem you CAN fix. If you're willing to share your blood glucose diary I would be happy to try to help.

I'm not medically trained so you take my advice at your own risk and I can only base it on what you tell me but I am good at this sort of problem and I do have the time to look at your numbers more that overworked NHS staff.

Nov 19, 2019

EdwardR 5 posts

Topic: General Discussion / Freestyle libre sensor

You probably know by now but the Freestyle reader and app will not scan it at all once the time is up

I use Libre in conjunction with a miaomiao* and xDrip which does keep taking data for a few more hours if you overshoot and the readings seem to still be good.

You can insert the replacement sensor early and only activate it once the time is up. They used to say the first 12 hours or so of readings were no good so it was worth putting the sensor in early but I think they've fixed that now.

Nov 13, 2019

marke 686 posts

Topic: General Discussion / infusion set issues

hmm, not sure I would agree that it is safe and more hygienic, but hey I have never been one to take medical experts at their word :-) Partly because I have been lucky/unlucky enough to be in rooms and meetings with them where they all disagree with each other. I guess there is no right or wrong answer to a lot of things relating to Diabetes. With regards to new techno gizmo's, the problem is the time it takes to get them to the public due to the need to have tested them endlessly. You can't use a device that is not 200% reliable, we rely on BG readings to manage if we go unconscious or not , so it can't give us the wrong information. There is also the complication that this type of device doesn't necessarily measure the blood directly so are potentially not as accurate. But I would love a device like that regardless. I know what you mean about app that can work out the carbs on a plate. We would ALL like one of those, wouldn't we :-) All these years and I still don't get it right when eating out.....

Nov 12, 2019

HelenP 218 posts

Topic: General Discussion / infusion set issues

Mark, Interesting discussion with the endo...Yes, current practice is to disconnect at the pump, not the infusion set. More hygienic and in many cases easier. No issues so long as it is not out for too long, probably best to suspend but no real problems if you don't. On the future he says they are working on an "apple" type watch that you will simply tap and it will read your BG (no pin pricks) and my wish, an app where you take a photo of your plate of food and it will estimate the number of carbs. The site on my thigh seems to be more reliable...but after switching to the Sensor 3 I have had to adjust a few settings.

Nov 6, 2019

Robert O 2 posts

Topic: General Discussion / Freestyle libre sensor

I've recently been put on a freestyle libre sensor and inquiring the countdown to when I need to change it when the countdown ends does it need to be changed there and then or will it work for a short while afterwards if so how long

Nov 5, 2019

HelenP 218 posts

Topic: General Discussion / infusion set issues

Thanks, as the infusion set is now half way down my thigh it will be interesting to see me reconnect it in a public waiting room. I usually wear pants... I am thinking I may suspend the pump, hand it over, replace and then see what the endo says. It would certainly make life easier. I do not know whether or not the guy suspended his pump. Someone told me they put a sharpie circle around the last site and then watch where you intuitively put the next couple... seems there are areas we favour.

Dec 31, 2019 marke 686 posts	Topic: Site Development / E-Petitioln Hi, temporarily changed until a formal update. We use a system called Ruby-on-Rails which is sort of a content management system but not exactly that. It will disappear in a formal update.

Dec 31, 2019 torana 53 posts	Topic: Site Development / E-Petitioln Hi Whitaker, I am very impressed by your enthusiasm and suggestions to make the DAFNE website more user friendly for everyone. I believe many DAFNE users relate to your comments regarding outdated threads needing to be fixed up to make a relevant website. It’s great Marke’s comments to fix up the web pages in the new year. 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. Firstly, you mention the problem with threads. I would like to again restate the amount of spam on this site that has been on the forum pages. This spam destroys forum communication and also leaves confusing deleted threads left on the page. Secondly, the DAFNE front page should state unequivocally that there is no relationship between DAFNE central, that is the DAFNE that provides courses in hospitals, and the forum pages voluntarily run by Marke. In fact, I find this surprising and confusing 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 forum is a mirror to DAFNE run in the hospital, with thousands of users and past participants listed on your website yet it is baffling the apparent lack of communication, coordination, contact or funding between DAFNE central and this forum that seemingly runs on an oily rag. Hoping everyone has a safe and healthy new year, 2020

Dec 29, 2019 Whitaker 4 posts	Topic: Site Development / E-Petitioln Thanks Marke, that's all I was asking for. Having been in IT for 40+ years, I'm well aware of the problems, and if nobody points thingd out then they might never get fixed. Timely and relevant information is so important for websites, so Ilook forward to the revised page. If you have a content management system then it should be a simple change, but even in HTML it should be a dead simple text edit. Thanks for responding and Happy New Year.

Dec 29, 2019 marke 686 posts	Topic: Site Development / E-Petitioln Hi, sorry yes we DO intend to fix it, the problem is when you manage the site you miss the obvious things :-( We need to update the front page soon anyway so I will ensure it does get fixed then !!

Dec 29, 2019 marke 686 posts	Topic: Questions for HCPs / High BG levels Hi, Would just like to echo torana's comments. I too was on Prednisolone for some time and it screwed my BG completely. It also caused my first ambulance call, that was when I came off them and no one told me to watch out for sharp drops in BG !! so watch out for that when you come off them. I found it hard to control my BG's when in Steroids because food would have a bigger more random effect on me i.e the size of portions would push up my BG's a lot more and I found it harder to get them back down. I agree you should be getting MORE help. I am surprised you are not getting it to be honest as I have found London hospitals have more resources and are able to do more with their patients. I think you should try speaking to them and see what help they can provide. MAaybe they could prescribe an abbott Libre sensor kit to help you monitor and manage your BG's more thoroughly when on Steroids. That is of course if YOU want to do that, we can only offer opinions its up to you what you do about it. I appreciate that not everyone likes hospitals or dealing with HCP's :-)

Dec 24, 2019 torana 53 posts	Topic: Questions for HCPs / High BG levels Hi Holly, I empathise with your situation and the bg’s are certainly high. I have Crohn’s and diabetes so have been on prednisone a few times with insulin. It can be very difficult to manage by yourself so the nurse/doctor must take on some of the responsibility for the changes in your bg’s. One consultation certainly isn’t enough! I would ring the hospital straight away and explain these massive changes after being told to switch insulins. Also I would be concerned about your KETONES.. have you checked it? If not or you don’t have the strips it would be worthwhile to go to the doctors/hospital and explain what’s happening after the changes in medication and such high bg’s. Insulin diabetes is hard enough to manage without being thrown into the lions den and taking prednisone steroids. Please get help straight away so you can relax and enjoy the festive season.

Dec 19, 2019 Holly_hols 1 post	Topic: Questions for HCPs / High BG levels 2 weeks ago I did the DAFNE course and during the course I had changed from tresiba to levermir basal insulin, during the course my blood glucose were good levels and never went above 14. However since then as my diary shows, my BG have been high and I'm not sure what to do! I am on prednisolone steroids and have been for 9months, I know this is affecting my BG but I had my bloods stable during the course with the diabetic nurses help. Not sure if it's my body adjusting to the Levemir now or what but no matter what I try my blood glucose keeps running high and I would like some help if anyone could please.

Dec 9, 2019 EdwardR 5 posts	Topic: Site Development / E-Petitioln Looks like a molehill out of a molehill to me.. and you could just fix the page

Dec 5, 2019 sjohno 37 posts	Topic: Site Development / E-Petitioln Whitaker I think you are making a mountain out of a molehill. 🤷‍♀️

Dec 5, 2019 Whitaker 4 posts	Topic: Site Development / E-Petitioln Sarah, thanks for coming back, but I think that you've just underlined my point: The petition ended in November 2013, so why is the home page still asking people to sign it? Such out of date material should not be present. If the home page is so out of date and irrewlevant, then what does it say about the rest of the content? There is no invitation to explore, just an impression that the site is out of date and not maintained. There doesn't seem to be much activity on the site, perhaps others have decided that it's all old stuff? Do we need a more active mopderator and admin team? There must be some positive and current news items that could replace an exhortation to sign a petition that closed seven years ago. As a new user, I'm full of enthusiasm and want to see the site active and used; but cannot accept that material that is seven years out of date should be the first thing that new users see. It is not relevant and should be removed, hence making my post to refer to the admin team.

Dec 4, 2019 sjohno 37 posts	Topic: Site Development / E-Petitioln Whitaker said: Hi Sarah, who knows?* I can't follow the link, so I don't know where it would take me! It's on the home page http://dafneonline.co.uk/ where this phrase is prominent: Please sign the E-petition calling for Structured Education for ALL Diabetics at http://epetitions.direct.gov.uk/petitions/41345 The point is that there should not be out of date, irrelevant or broken links on the page. If the petition is closed then there should not be a message asking people to sign it. By all means have an article that says "We petitioned the Government..." or create a new petition, but do not have a hoime page that creates a poor impression. Regards Simon *Yes, I can see that the petition number is the same, but that's not the point E-Petition By marke on December 03, 2012 21:55 The DAFNE User Action Group has raised a petition for central funding of a national structured education programme for diabetics (including DAFNE). They are publicising this initiative from as many angles as possible, hence this news article. If enough votes are registered then a government debate will be trigggered which it is hoped will result in some kind of programme to do what is suggested i.e National Structured Education programmes for Diabetes. This is for ALL Diabetics not just Type 1's. The link to the e-peittion is: http://epetitions.direct.gov.uk/petitions/41345 The statement was posted on the DAFNE website 03.12.2012 - 7 years ago. It's a very old message! The petition ended 08.11.2013. regards Sarah

Dec 4, 2019 Whitaker 4 posts	Topic: Site Development / E-Petitioln Hi Sarah, who knows?* I can't follow the link, so I don't know where it would take me! It's on the home page http://dafneonline.co.uk/ where this phrase is prominent: Please sign the E-petition calling for Structured Education for ALL Diabetics at http://epetitions.direct.gov.uk/petitions/41345 The point is that there should not be out of date, irrelevant or broken links on the page. If the petition is closed then there should not be a message asking people to sign it. By all means have an article that says "We petitioned the Government..." or create a new petition, but do not have a hoime page that creates a poor impression. Regards Simon *Yes, I can see that the petition number is the same, but that's not the point

Dec 4, 2019 sjohno 37 posts	Topic: Site Development / E-Petitioln Whitaker said: One for the Admin team: I've just graduated and joined this site. The first thing I read was a plea to sign the petition asking for structured education for all diabetics. I agree wholeheartedly and so tried to go to petition site. Unfortunately the link is broken, returning a 403 not satisfied error. Perhaps the team could check and amend the home page. Whitaker, is your query regarding the below link: https://petition.parliament.uk/archived/petitions/41345 If so the petition ended 08.11.2013 perhaps that's why you get a broken link. regards Sarah

Nov 27, 2019 Whitaker 4 posts	Topic: Site Development / E-Petitioln One for the Admin team: I've just graduated and joined this site. The first thing I read was a plea to sign the petition asking for structured education for all diabetics. I agree wholeheartedly and so tried to go to petition site. Unfortunately the link is broken, returning a 403 not satisfied error. Perhaps the team could check and amend the home page.

Nov 24, 2019 alturn 78 posts	Topic: General Discussion / CT Scan & insulin I am having a CT scan on Thu 28th at 09:00, which means restricted diet before the scan. I can have clear fluids (apple juice, water) or black tea in the four hours before the scan. I take Novarapid (QA) before meals and Levemir (BI) am and pm. As I won't be eating much, I will probably miss the morning QA and take half my BI at breakfast time. After the scan, I'll take the other half of the BI, along with QA and a snack, based on BG. This is based on instructions for another type of scan with more restrictions. Has anybody any experience of CT scan and how did you manage your insulin? Thanks, J

Nov 20, 2019 EdwardR 5 posts	Topic: General Discussion / Bed wetting outdoorsteve said: Does anyone experience bed wetting in their sleep due to their diabetes. I wet the bed during the night and when I went to bed I was 19.1at dinner. My blood glucose has always been erratic and now I feel embarrassed for wetting the bed. I haven't had bed wetting but when diagnosed I was drinking ~8 liters per day and getting up every 2 hours or so -sounds like you are just not waking up. Is 19 a normal level for you? (what HA1C?) Your GP can probably help with pads and such but if you are regularly at 19mmol/l that's a problem you CAN fix. If you're willing to share your blood glucose diary I would be happy to try to help. I'm not medically trained so you take my advice at your own risk and I can only base it on what you tell me but I am good at this sort of problem and I do have the time to look at your numbers more that overworked NHS staff.

Nov 19, 2019 EdwardR 5 posts	Topic: General Discussion / Freestyle libre sensor You probably know by now but the Freestyle reader and app will not scan it at all once the time is up I use Libre in conjunction with a miaomiao* and xDrip which does keep taking data for a few more hours if you overshoot and the readings seem to still be good. You can insert the replacement sensor early and only activate it once the time is up. They used to say the first 12 hours or so of readings were no good so it was worth putting the sensor in early but I think they've fixed that now.

Nov 13, 2019 marke 686 posts	Topic: General Discussion / infusion set issues hmm, not sure I would agree that it is safe and more hygienic, but hey I have never been one to take medical experts at their word :-) Partly because I have been lucky/unlucky enough to be in rooms and meetings with them where they all disagree with each other. I guess there is no right or wrong answer to a lot of things relating to Diabetes. With regards to new techno gizmo's, the problem is the time it takes to get them to the public due to the need to have tested them endlessly. You can't use a device that is not 200% reliable, we rely on BG readings to manage if we go unconscious or not , so it can't give us the wrong information. There is also the complication that this type of device doesn't necessarily measure the blood directly so are potentially not as accurate. But I would love a device like that regardless. I know what you mean about app that can work out the carbs on a plate. We would ALL like one of those, wouldn't we :-) All these years and I still don't get it right when eating out.....

Nov 12, 2019 HelenP 218 posts	Topic: General Discussion / infusion set issues Mark, Interesting discussion with the endo...Yes, current practice is to disconnect at the pump, not the infusion set. More hygienic and in many cases easier. No issues so long as it is not out for too long, probably best to suspend but no real problems if you don't. On the future he says they are working on an "apple" type watch that you will simply tap and it will read your BG (no pin pricks) and my wish, an app where you take a photo of your plate of food and it will estimate the number of carbs. The site on my thigh seems to be more reliable...but after switching to the Sensor 3 I have had to adjust a few settings.

Nov 6, 2019 Robert O 2 posts	Topic: General Discussion / Freestyle libre sensor I've recently been put on a freestyle libre sensor and inquiring the countdown to when I need to change it when the countdown ends does it need to be changed there and then or will it work for a short while afterwards if so how long

Nov 5, 2019 HelenP 218 posts	Topic: General Discussion / infusion set issues Thanks, as the infusion set is now half way down my thigh it will be interesting to see me reconnect it in a public waiting room. I usually wear pants... I am thinking I may suspend the pump, hand it over, replace and then see what the endo says. It would certainly make life easier. I do not know whether or not the guy suspended his pump. Someone told me they put a sharpie circle around the last site and then watch where you intuitively put the next couple... seems there are areas we favour.