Below is the latest news from DAFNE Online - including stories related to the
website, the DAFNE Course, and Type 1 Diabetes in general. If you feel you have a
noteworthy news item, please
contact us here.
DAFNE Online Roadshow
on April 27, 2015 18:12
On Saturday we took our fantastic DAFNE Online presentation to Addenbrooke's Hospital Cambridge for their patient day. It was a very well run day and a good example to other centres. We presented our usual highly polished, professional presentation :-) that explains how to use the app and site. We also added a few members by signing up people on the day. In reality, good though we were, we were just the warm up act for the next speaker who was billed as the 'inspirational speaker'. I must admit to being a bit dubious when I saw this on the agenda, but no they were right. The speaker was Gavin Griffiths who is also known as diAthlete and his story should be an inspiration to us all. He was diagnosed as Type 1 at 8 years old and like most of us spent the next 8-9 years being told what he could not do and got increasingly frustrated by this. Unlike most of us, he decided he was going to prove all these people wrong. His first way of doing this was to run 29 miles in 3 hours for charity. He then just took on more and more challenging tasks. Probably the biggest of which was to run from John O'Groats to Lands End, 30 miles for 30 days. As he said to us, Eddie Izzard does it and the whole of the UK media are there, a Type 1 diabetic does it and hardly anyone cares ( not even the national Diabetes Charity, but lest not go there). He has plans for bigger challenges yet and listening and chatting to him just shows you what you can achieve if you DON'T let all those people who tell you Type 1 limits you !! Respect !
Tell them about DAFNE !!
on November 06, 2014 18:54
All, we have been ask to put this as a news item, we would like people to tell them how good DAFNE is and why it IS important that structured education is provided to ALL Diabetics. The following is taken from the message we were asked to publicise:
The All Party Parliamentary Group is calling for case studies from people living with diabetes and for written evidence from healthcare professionals, academics, commissioners and providers of education courses to better understand different types of learning and support available, existing gaps in service and to identify reasons for low uptake when structured education is offered.
The deadline for submitting case studies and written evidence is 30th November 2014.
The form for submitting your views about structured education and why DAFNE is important can be downloaded here
You then need to email your thoughts to firstname.lastname@example.org , if you do send something can you please cc it to email@example.com so they know what is being submitted about DAFNE and can re-enforce it and follow it up.
New Blood Glucose Meter on Trial
on October 10, 2014 18:47
One of us (marke) has been lucky enough to be given one of the new Abbott FreeStyle Libre Meters to trail. They call it a 'flash' meter and its effectively a Continuous Blood Glucose Montoring system and is the first of its type to be available. You can read my reports about it in forum posts here . If you are interested in a meter like this have a read of my reports.
I should point out that getting the meter is not connected to the site, its because I have a good consultant :-)
Background Insulin Announcement
on June 18, 2014 19:48
The following link contains an update from the DAFNE Executive Team on Background Insulin's and DAFNE. You can find it here : BackgroundInsulininDAFNE.pdf
Apologies if it is too technical I did try to get the to get them to put it in 'user' terms and it is more straight forward then is was !
Formation of DAFNE Graduate Group (DGG)
on April 30, 2014 21:21
The members of the DAFNE User Group (DUG) and eligible DAFNE Online users are joining together to form the DAFNE Graduate Group. Membership is open to all existing DUG members and all DAFNE Online users who:
â€¢ Are DAFNE Graduates who attended a DAFNE course in the UK or Republic of Ireland
â€¢ Agree to accept occasional communication by e-mail from DUAG
Benefits of the combined membership for all members will be:
â€¢ Access to DAFNE Online Apps for iPhone & Android devices
â€¢ Access to DAFNE Online Forums to discuss questions, issues or topics of interest to other users
â€¢ Ability to ask questions direct to Health Care Professionals (HCPs) both in your own DAFNE Centre and through a specific forum
â€¢ Information updates from DUAG through a regular newsletter and specific updates e.g. on announcements made at the annual DAFNE Collaborative
â€¢ Opportunity to get more involved in running the DAFNE programme in the UK & Republic of Ireland
â€¢ On-line access to the DAFNE workbook and information on changes made during updates
â€¢ Briefings on the latest DAFNE research and its impact on the DAFNE programme
â€¢ Interaction with a social network of nearly 9,000 DAFNE Graduates and a total of nearly 14,000 users with an interest in DAFNE plus the ability to directly interact with other users from your own DAFNE Centre
The e-mail communication from DUAG will include a newsletter produced every 3-6 months and occasional other requests (e.g. for feedback on initiatives being run by DUAG or for patient input on focus points for DUAG or questions being considered by the DAFNE Executive). We will not swamp your e-mail inbox and DUAG commit not to share your e-mail address with any other party, including DAFNE.
If you are interested in joining the DAFNE Graduates Group and you are already registered as a Graduate in DAFNE Online, please update your profile to select the option to â€œSend me information from the DUAGâ€ by clicking on Settings and then Change Profile
If you are not registered as a Graduate in DAFNE Online, then please contact your DAFNE Centre to obtain the access code for your Centre and then add this to your profile as well as opting-in for communication from DUAG.
In addition, all existing DAFNE Online members who update their profile to opt-in for communication from DUAG before 30th June will be entered into a prize draw for a bottle of champagne.
I look forward to welcoming you in the DGG. If you have any questions please feel free to send me a message through DAFNE Online using my Login ID of rogersp.
Stem Cell Research
on April 13, 2014 09:22
We have received the following request, which maybe you can help with !!
I am a final year Biology undergraduate at Edinburgh University, currently doing a project to evaluate the fact sheets about stem cell research on the website www.eurostemcell.org.
One of the fact sheets is about how stem cell science could help Type 1 diabetes in the future, so I would be really interested to get feedback from people with Type 1 diabetes and their family and friends.
Would you be willing to circulate my survey around your members? It only takes about 15 minutes and all respondents can enter a prize draw to win a Â£100 Amazon voucher. The deadline for entering is 24/4/14.
Here is the link:
Diary problem resolved
on January 19, 2014 17:37
We have now hopefully resolved the issues with the online Blood Glucose Diary. The website pages should now be working at an acceptable speed without any 'we are sorry something has gone wrong' errors. Thank you to everyone for their patience whilst we worked out what the issue was an fixed it. As ever please contact us if you experience problems with any of the pages on the site.
DAFNE Collaborative 2013
on August 01, 2013 19:23
You can find a report on the DAFNE Collaborative 2012 here : collab report
Somebody please read it, I had to jump through more hoops than a Sealion at Sea World to get it approved and published !!
on April 30, 2013 19:09
Simon Ajina has sent us the following information that we are more than happy to share:
I am not sure if this has filtered down yet but I have managed to get DVLA to change the rules for BG testing before driving to remove the 30 minute bit that came in the new declaration text introduced in I think 2012.
Basically the declaration that insulin-treated Diabetes drivers renewing their license had to sign was that the BG test before I drive should be within 30 minutes of the first drive and then at most 2 hours before every subsequent drive. I had to sign this declaration in March this year when I renewed the license. I found it nonsensical and I tried to find out how to get it changed. My argument was that if you test BG with breakfast say at 08:30am and then drive a short drive at 09:00am and another drive at say 10:30am you are within the law. But if you miss out the first short drive at 09:00am and instead stay at home all relaxed and resting and then take the 2nd drive at 10:30am you would be breaking the law because the BG test was more than 30 minutes before the drive. I also argued that the chances are that your BG would be higher if you rested at home instead of the extra outing at 09:00am and in any case BG probably is peaking at that time after breakfast.
Anyway, I tried to find out how to input this argument into the DVLA discussions and I left a note on a contact us form for the Diabetes UK web site because they publicise the fact that they negotiated the contents of the DIAB1 form with DVLA last year and the year before I think. Anyway I got no response from Diabetes UK, then I did more research and found the minutes of the DVLA Diabetes Panel meeting from last September and that gave me names - so I tracked down the chairperson and managed to contact them and put my arguments across. They promised to raise the matter at the following DVLA Panel meeting scheduled this year.
I was jubilant when I received a letter from DVLA Panel secretary saying they had discussed my points and decided to redefine what appropriate testing meant. I am glad to report that I can now see a new version of the DVLA DIAB1 form online with the new text !!!
The old text was:
I have insulin treated diabetes and I understand the need to test my blood glucose/sugar at times relevant to driving (within 30 minutes before the first journey and every two hours while driving
The new text in DIAB1 April 2013 revised version is:
I have insulin treated diabetes and I understand the need to test my blood glucose/sugar at times relevant to driving (not more than 2 hours before the start of the 1st journey and every 2 hours while driving. The object of this is to ensure the blood glucose is always above 5mmol/l per litre while driving).
Old text in DIAB1 Guidance Notes:
This is a legal requirement and the DVLA medical panel have defined that you need to do this before the first journey and every 2 hours while driving.
New Text in the Guidance Notes:
This is a legal requirement and the DVLA medical panel have defined this as the need to test no more than 2 hours before the start of the 1st journey and every 2 hours while driving. More frequent testing may be required if for any reason there is a greater risk of hypoglycaemia for example after physical activity or altered meal routine.
See new DIAB1
and the updated guidance notes
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