Recent Posts by marke - DAFNE Online

Nov 6, 2016

marke 657 posts

Topic: General Discussion / Printing the Sick-day Rules

Hi,
It is impossible to stop people doing screen grabs, I 'think' the NHS legal people understand this, we were told to protect the document as much as possible and that is what we have done. There will always ways around anything....

Oct 27, 2016

marke 657 posts

Topic: General Discussion / Printing the Sick-day Rules

Nothing, I'm afraid we were forced to disable printing of the course handbook by the DAFNE programme team. It was made part of us being allowed to have the handbooks on the site. If you don't agree with this you need to contact [email protected] and ask them for an explanation. Its a bit of a political situation that hopefully will be learned from in the new DAFNEplus coming in the next year or so. They want to make that much more online.

Aug 29, 2016

marke 657 posts

Topic: General Discussion / NICE Guidance on Diabetes

hhmmm, seems medical staff are the same the world over :-( They mean well but think their training equips them to have understanding of stuff they don't fully grasp. As I said all you need is a firm attitude and they do as they are told usually ;-)

Aug 19, 2016

marke 657 posts

Topic: General Discussion / NICE Guidance on Diabetes

The DAFNE Programme team have asked us to publish this information on our news page. It relates to a new document issued by NICE ( UK medical body) regarding Diabetes. If I sound a bit cynical in the news article its because NICE publish lots of guidance but none of it is actually mandatory and so the NHS is free to do what it wants. The idea of people being given structured education within 12 months of Diagnosis would be great if it wasn't for the fact that in my area the waiting list to do a course is about 18 months, So even if you are referred for a course within 12 months you won't actually do one. They also say that Diabetics should be allowed to manage their own diabetes if admitted to hospital, someone needs to tell nurses this Sad

I had to be very firm, borderline rude when they tried to take over my management when I was in hospital. However not everyone is a 'difficult' person like me and will accept their management being taken over on the grounds that the nurse knows best ( not unless they are a Diabetes nurse and even then sometimes no Wink

)

Anyway have a read and see what YOU think......

Jun 16, 2016

marke 657 posts

Topic: Carbohydrate Counting / CP free lunch

Warwick, sorry you cannot say that is not true and quote a book. We are ALL different and whilst it may not be true for you it may be true for some others. We can debate the breakdown of protein into sugars forever but that won't make it any more applicable to you or me. Personally I don't agree with low carb diets, but if people wish to practice them then its their prerogative to be misguided Wink

May 18, 2016

marke 657 posts

Topic: Site Development / Petition link on home page has been archived

yes I know sorry, really need to re-issue the site, to remove it......

May 18, 2016

marke 657 posts

Topic: General Discussion / BI split

since AM and PM are both 12 hours periods there is a lot more to the split than dose. That said I did split mine 22 and 18 which is a big difference to 15% and 85%, however now I don't need BI at all Laughing

the joys of a pump.....

May 18, 2016

marke 657 posts

Topic: General Discussion / Medical tattoos

Not for me, when they release the cure in a couple of years, I would have to get it removed Wink

May 18, 2016

marke 657 posts

Topic: General Discussion / sweet drinks

Hi, If its a bottled cocktail it should be on the bottle, If it's not then its a bit of guess work based on volume and ingredient. You would need to be more precise on the ingredient. I wasn't aware that DAFNE specified anything about having juice alone, its not the handbooks we have. It does have a high GI but in moderation I don't see why it would be a problem. I use the reduced sugar juices and don't see why they would be a problem.

Apr 26, 2016

marke 657 posts

Topic: DAFNE Online Mobile / iPhone 6

In theory the two should work the same and the authentication check is identical, I would suggest setting a simple password temporarily to see if it resolves the issue. I have also seen people add a space at the start of the username/password in the app that the website will not accept. So also try clearing both fields in the app and re-entering your credentials again. If you still experience issues please post the date and time you attempted to connect with the app so I can check in the logs to try to identify what is happening.

Mar 24, 2016

marke 657 posts

Topic: General Discussion / Pump death?

sorry to come late to this party, but I now proudly possess a medtronic 640G ( god bless the UK NHS) and am in love with it. Like NovarapidBoi I am unlikely to get the CGM function since it is expensive and the NHS won't pay :-(
Sadly it has the same clip problems, mine has come apart once already after a week and the guy on the pump course with me actually broke the casing on his pump. The bit that the clip slides into ! They are sending him a new pump as they say its a design fault.
I can't comment on the download yet as the NHS has still to register us all with medtronic, however we all got a bayer meter that links to the pump via bluetooth and sends your BG's to it for the bolus calculator to set the right dose. This works really well and having the pump has made a huge difference to my insulin requirements. I would love the CGM as well but as I said until the cost is more manageable I'm unlikely to use it. Currently the sensors are Â£28 ($52 ) for 6 days, without any health insurance this is a lot of money. But with the Abbott Libre on the market and rumours of other similar systems to be launched we can all hope the prices tumble and we can all afford to use them.
I'm not sure how long I would have to wait for an upgrade will shall see over the coming years....

Mar 24, 2016

marke 657 posts

Topic: Carbohydrate Counting / Beer advice confusing

I would advise a lot more research into this to be sure, in my experience studying the affects of beer on your BG is always a worthwhile activity Very Happy

But seriously its the old maxim, everyone is different and the carb counter is just a rough guide, the only way to be sure is try it and see what happens.

Feb 7, 2016

marke 657 posts

Topic: General Discussion / DAFNE Course Handbook

Hi,
Good question, who knows. The blunt answer is we have been asking for over 2 years for updated versions and despite repeated promises we have not received them. I suggest you all email [email protected] and ask them when they are going to release updated versions to DAFNEOnline.

Jan 27, 2016

marke 657 posts

Topic: General Discussion / freestyle libra

yes a number of people, there is a long thread on this forum, about it. search for freestyle libre. Secondly no its not available on the NHS, Abbott the manufacturer are in discussions with the NHS but don't hold your breath :-(

Jan 11, 2016

marke 657 posts

Topic: General Discussion / A plea for Structured education

From the DAFNE UK website a speech given by a DAFNE graduate at a Diabetes UK meeting. A sadly familiar story of diabetes, you can read it here

Jan 1, 2016

marke 657 posts

Topic: General Discussion / DAFNE Principles

sorry just found this thread, xmas holiday and all that Very Happy

IF you email us which centre you attended, it sounds like a london one then we can get it sorted. If any centre is having issues in accessing the site they just need to contact us and we will sort it. I don't want to be rude, but many seem to struggle with the concepts behind IT, but hey they are supposed to fix people not machines, right Laughing

Nov 24, 2015

marke 657 posts

Topic: General Discussion / I know this is the Express but ....

Hi, Sorry but six people is not a study, they can't make any judgements or state side effects if the study was only 6 people !!
Interesting, yes, a cure, not really......

Oct 25, 2015

marke 657 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 657 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.

Sep 8, 2015

marke 657 posts

Topic: General Discussion / Apple watch

if you provide one for us to test on Very Happy

Sep 3, 2015

marke 657 posts

Topic: General Discussion / Dosage auto-calculation in apps

hi betj1, when you are prepared to post in an adult manner and discuss the issue sensibly then get back to us and we will explain who the MHRA are and why its an issue. If you wish to continue with insults and accusations then I will leave you to it,

Sep 3, 2015

marke 657 posts

Topic: General Discussion / Dosage auto-calculation in apps

Hi bejt1, sorry I don't understand your post at all. Who are you aiming it at ? If its us at dafneonline then you need to read the thread properly. No the auto-calculate won't be re-introduced and we have explained why. If its aimed at the MHRA, then they don't read or care about dafneonline....

Aug 28, 2015

marke 657 posts

Topic: General Discussion / Dosage auto-calculation in apps

Hi Annette,
Sorry but you letter enforces the fact that the app was being used to make decisions on insulin doses. Since insulin is considered a 'serious' drug i.e it can easily kill you, the fact people are saying they use it to make judgements like driving will just convince the MHRA they have made the right decision. Most drug companies invest large amounts of money into this kind of thing, not because it is hugely complicated but because of the potential consequences if the dose suggested is wrong. Thus the calculations are subject to lots of regulations and the drug companies all have large liability insurance to cover 'accidents'.
That's not so say I agree with the MHRA in any way, all we were doing is implementing a calculation that the user now has to do manually and is more likely to get wrong. However if we do get it wrong we can only blame ourselves and sadly in the current world thats all the MHRA care about. Your Diabetes Nurse may well say she disagrees 'unofficially', however her CCG will not say that they will support the MHRA for fear of being sued by patients.
Cynical me ? No, I have to work with people like the MHRA and NHS. I know how they work. Sorry.

Aug 19, 2015

marke 657 posts

Topic: Questions ? / morning BI

not sure that taking BI earlier would help a morning high BG. It has a fairly flat profile. I was getting High BG's and it looked a lot like Dawn Phenomenon. However, and I still don't quite understand this, I have moved my BI injection from 9PM an 11PM and have much lower BG in the morning. It really should have the effect that is, but it does.However as Carolin says consistency is the key. Injecting at the same times every day is the only way to get consistent results and the means to adjust based on those results.

Jul 27, 2015

marke 657 posts

Topic: General Discussion / JDRF Fund raisers

All we have been requested to promote a couple of upcoming Juvenile Diabetes Research Foundation (JDRF) events on the site, so here they are. Please click on the links for more information

Ain't No Mountain High Enough Challenge - The link for the event is here - https://www.jdrf.org.uk/get-involved/join-in-an-event/treks/aint-no-mountain-high-enough and the deadline for people to sign up is the end of this week.

One Walk - The link for the event is here - https://www.jdrf.org.uk/get-involved/join-in-an-event/walks/one-walk-london-bridges and the deadline for people to sign up is the end of September.

Nov 6, 2016 marke 657 posts	Topic: General Discussion / Printing the Sick-day Rules Hi, It is impossible to stop people doing screen grabs, I 'think' the NHS legal people understand this, we were told to protect the document as much as possible and that is what we have done. There will always ways around anything....

Oct 27, 2016 marke 657 posts	Topic: General Discussion / Printing the Sick-day Rules Nothing, I'm afraid we were forced to disable printing of the course handbook by the DAFNE programme team. It was made part of us being allowed to have the handbooks on the site. If you don't agree with this you need to contact [email protected] and ask them for an explanation. Its a bit of a political situation that hopefully will be learned from in the new DAFNEplus coming in the next year or so. They want to make that much more online.

Aug 29, 2016 marke 657 posts	Topic: General Discussion / NICE Guidance on Diabetes hhmmm, seems medical staff are the same the world over :-( They mean well but think their training equips them to have understanding of stuff they don't fully grasp. As I said all you need is a firm attitude and they do as they are told usually ;-)

Aug 19, 2016 marke 657 posts	Topic: General Discussion / NICE Guidance on Diabetes The DAFNE Programme team have asked us to publish this information on our news page. It relates to a new document issued by NICE ( UK medical body) regarding Diabetes. If I sound a bit cynical in the news article its because NICE publish lots of guidance but none of it is actually mandatory and so the NHS is free to do what it wants. The idea of people being given structured education within 12 months of Diagnosis would be great if it wasn't for the fact that in my area the waiting list to do a course is about 18 months, So even if you are referred for a course within 12 months you won't actually do one. They also say that Diabetics should be allowed to manage their own diabetes if admitted to hospital, someone needs to tell nurses this I had to be very firm, borderline rude when they tried to take over my management when I was in hospital. However not everyone is a 'difficult' person like me and will accept their management being taken over on the grounds that the nurse knows best ( not unless they are a Diabetes nurse and even then sometimes no ) Anyway have a read and see what YOU think......

Jun 16, 2016 marke 657 posts	Topic: Carbohydrate Counting / CP free lunch Warwick, sorry you cannot say that is not true and quote a book. We are ALL different and whilst it may not be true for you it may be true for some others. We can debate the breakdown of protein into sugars forever but that won't make it any more applicable to you or me. Personally I don't agree with low carb diets, but if people wish to practice them then its their prerogative to be misguided

May 18, 2016 marke 657 posts	Topic: Site Development / Petition link on home page has been archived yes I know sorry, really need to re-issue the site, to remove it......

May 18, 2016 marke 657 posts	Topic: General Discussion / BI split since AM and PM are both 12 hours periods there is a lot more to the split than dose. That said I did split mine 22 and 18 which is a big difference to 15% and 85%, however now I don't need BI at all the joys of a pump.....

May 18, 2016 marke 657 posts	Topic: General Discussion / Medical tattoos Not for me, when they release the cure in a couple of years, I would have to get it removed

May 18, 2016 marke 657 posts	Topic: General Discussion / sweet drinks Hi, If its a bottled cocktail it should be on the bottle, If it's not then its a bit of guess work based on volume and ingredient. You would need to be more precise on the ingredient. I wasn't aware that DAFNE specified anything about having juice alone, its not the handbooks we have. It does have a high GI but in moderation I don't see why it would be a problem. I use the reduced sugar juices and don't see why they would be a problem.

Apr 26, 2016 marke 657 posts	Topic: DAFNE Online Mobile / iPhone 6 In theory the two should work the same and the authentication check is identical, I would suggest setting a simple password temporarily to see if it resolves the issue. I have also seen people add a space at the start of the username/password in the app that the website will not accept. So also try clearing both fields in the app and re-entering your credentials again. If you still experience issues please post the date and time you attempted to connect with the app so I can check in the logs to try to identify what is happening.

Mar 24, 2016 marke 657 posts	Topic: General Discussion / Pump death? sorry to come late to this party, but I now proudly possess a medtronic 640G ( god bless the UK NHS) and am in love with it. Like NovarapidBoi I am unlikely to get the CGM function since it is expensive and the NHS won't pay :-( Sadly it has the same clip problems, mine has come apart once already after a week and the guy on the pump course with me actually broke the casing on his pump. The bit that the clip slides into ! They are sending him a new pump as they say its a design fault. I can't comment on the download yet as the NHS has still to register us all with medtronic, however we all got a bayer meter that links to the pump via bluetooth and sends your BG's to it for the bolus calculator to set the right dose. This works really well and having the pump has made a huge difference to my insulin requirements. I would love the CGM as well but as I said until the cost is more manageable I'm unlikely to use it. Currently the sensors are Â£28 ($52 ) for 6 days, without any health insurance this is a lot of money. But with the Abbott Libre on the market and rumours of other similar systems to be launched we can all hope the prices tumble and we can all afford to use them. I'm not sure how long I would have to wait for an upgrade will shall see over the coming years....

Mar 24, 2016 marke 657 posts	Topic: Carbohydrate Counting / Beer advice confusing I would advise a lot more research into this to be sure, in my experience studying the affects of beer on your BG is always a worthwhile activity But seriously its the old maxim, everyone is different and the carb counter is just a rough guide, the only way to be sure is try it and see what happens.

Feb 7, 2016 marke 657 posts	Topic: General Discussion / DAFNE Course Handbook Hi, Good question, who knows. The blunt answer is we have been asking for over 2 years for updated versions and despite repeated promises we have not received them. I suggest you all email [email protected] and ask them when they are going to release updated versions to DAFNEOnline.

Jan 27, 2016 marke 657 posts	Topic: General Discussion / freestyle libra yes a number of people, there is a long thread on this forum, about it. search for freestyle libre. Secondly no its not available on the NHS, Abbott the manufacturer are in discussions with the NHS but don't hold your breath :-(

Jan 11, 2016 marke 657 posts	Topic: General Discussion / A plea for Structured education From the DAFNE UK website a speech given by a DAFNE graduate at a Diabetes UK meeting. A sadly familiar story of diabetes, you can read it here

Jan 1, 2016 marke 657 posts	Topic: General Discussion / DAFNE Principles sorry just found this thread, xmas holiday and all that IF you email us which centre you attended, it sounds like a london one then we can get it sorted. If any centre is having issues in accessing the site they just need to contact us and we will sort it. I don't want to be rude, but many seem to struggle with the concepts behind IT, but hey they are supposed to fix people not machines, right

Nov 24, 2015 marke 657 posts	Topic: General Discussion / I know this is the Express but .... Hi, Sorry but six people is not a study, they can't make any judgements or state side effects if the study was only 6 people !! Interesting, yes, a cure, not really......

Oct 25, 2015 marke 657 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 657 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.

Sep 8, 2015 marke 657 posts	Topic: General Discussion / Apple watch if you provide one for us to test on

Sep 3, 2015 marke 657 posts	Topic: General Discussion / Dosage auto-calculation in apps hi betj1, when you are prepared to post in an adult manner and discuss the issue sensibly then get back to us and we will explain who the MHRA are and why its an issue. If you wish to continue with insults and accusations then I will leave you to it,

Sep 3, 2015 marke 657 posts	Topic: General Discussion / Dosage auto-calculation in apps Hi bejt1, sorry I don't understand your post at all. Who are you aiming it at ? If its us at dafneonline then you need to read the thread properly. No the auto-calculate won't be re-introduced and we have explained why. If its aimed at the MHRA, then they don't read or care about dafneonline....

Aug 28, 2015 marke 657 posts	Topic: General Discussion / Dosage auto-calculation in apps Hi Annette, Sorry but you letter enforces the fact that the app was being used to make decisions on insulin doses. Since insulin is considered a 'serious' drug i.e it can easily kill you, the fact people are saying they use it to make judgements like driving will just convince the MHRA they have made the right decision. Most drug companies invest large amounts of money into this kind of thing, not because it is hugely complicated but because of the potential consequences if the dose suggested is wrong. Thus the calculations are subject to lots of regulations and the drug companies all have large liability insurance to cover 'accidents'. That's not so say I agree with the MHRA in any way, all we were doing is implementing a calculation that the user now has to do manually and is more likely to get wrong. However if we do get it wrong we can only blame ourselves and sadly in the current world thats all the MHRA care about. Your Diabetes Nurse may well say she disagrees 'unofficially', however her CCG will not say that they will support the MHRA for fear of being sued by patients. Cynical me ? No, I have to work with people like the MHRA and NHS. I know how they work. Sorry.

Aug 19, 2015 marke 657 posts	Topic: Questions ? / morning BI not sure that taking BI earlier would help a morning high BG. It has a fairly flat profile. I was getting High BG's and it looked a lot like Dawn Phenomenon. However, and I still don't quite understand this, I have moved my BI injection from 9PM an 11PM and have much lower BG in the morning. It really should have the effect that is, but it does.However as Carolin says consistency is the key. Injecting at the same times every day is the only way to get consistent results and the means to adjust based on those results.

Jul 27, 2015 marke 657 posts	Topic: General Discussion / JDRF Fund raisers All we have been requested to promote a couple of upcoming Juvenile Diabetes Research Foundation (JDRF) events on the site, so here they are. Please click on the links for more information Ain't No Mountain High Enough Challenge - The link for the event is here - https://www.jdrf.org.uk/get-involved/join-in-an-event/treks/aint-no-mountain-high-enough and the deadline for people to sign up is the end of this week. One Walk - The link for the event is here - https://www.jdrf.org.uk/get-involved/join-in-an-event/walks/one-walk-london-bridges and the deadline for people to sign up is the end of September.