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Jun 15, 2010
Simon
574 posts
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Topic: General Discussion / DAFNE Collaborative 2010 The DAFNE Collaborative for 2010 took place on Friday 11th June at the Midland Hotel in Manchester. The event was attended by DAFNE Educators from around the UK, Ireland and Australia, as well as other stakeholders from Diabetes UK, the DAFNE User Action Group (DUAG) and DAFNE Online. This event is aimed at updating the DAFNE community on new research and DAFNE guidelines.The day began with a welcome from Professor Stephanie Amiel, who chairs the DAFNE Executive. She informed us that DAFNE was celebrating it’s 10th birthday this year, and that it has gone from strength to strength, with over 16,000 people having taken the course since it’s inception. Another notable fact was the number of countries following the DAFNE programme, with those countries being the UK, Ireland, Australia, New Zealand, Germany, Spain, South Africa, Nigeria and Kuwait. Stephanie then handed over to Peter Rogers from the DAFNE User Action Group (DUAG) and myself (Simon Fisher) from DAFNE Online. Peter kicked off the presentation by informing delegates of the formation and purpose of the DUAG, and then went on to discuss in detail the four streams of work that the group is concentrating on in the future, these being the Liaison, Awareness, Lobbying and Involvement groups. Simon then went on to discuss DAFNE Online, including its aims, features and benefits to DAFNE users. After this Peter wrapped up the presentation, inviting attendees to discuss amongst themselves a set of questions related to the presentation that they had just seen. These questions and answers will be detailed here when DAFNE Central has collated them. In the final part of this session, delegates were invited to ask questions of the two speakers. The majority of these questions came in the form of enhancement requests for DAFNE Online, and these are summarised below: • DAFNE Online agreed to produce a Video and DVD to give to HCP’s and post online by way of an introduction to the site, so that educators who aren’t comfortable with IT are able to showcase the site to their Graduates. • An enhancement to the Online Diary so that users can specify whether the BG entries are colour coded according to target, as some users may not want to see this information. • When users receive a message online, they would like to be emailed about this. • We may look to hosting questionnaires for the various DAFNE Centres around follow-up reviews, with the aim of increasing user response. Feedback from this presentation was very positive, and a great number of delegates were enthusiastic about the DUAG and DAFNE Online. Following this presentation, Dr. Ian Lawrence presented research on a comparison of different basal insulins. This research focused on insulin usage and HBA1C both during the DAFNE Course and 1 year on, comparing this data for three main types of basal insulin. The results from this research will be published to the DAFNE UK site shortly. After Ian’s presentation there followed a coffee break, where DAFNE Online had a table and presentation running in the coffee area. We were inundated with visitors to the DAFNE Online table, with around 15 delegates signing up to the site during and after the break, some from DAFNE centres that previously had no educator coverage on the site. A number of delegates were also interested in viewing a preview of the DAFNE Online iPhone app, which Simon had on his iPhone. Again, feedback on this was very positive. There then followed more presentations on recent research in Type 1 and DAFNE, but due to the overwhelming number of visitors to the DAFNE Online table, I missed out on these. The slides/content from these will shortly be posted on the DAFNE UK site for those who are interested. After a delicious buffet lunch, the afternoon sessions commenced. These were a number of workshops around different topics related to DAFNE. Again, as I could only attend one of these, the information/results of the other sessions can be found on the DAFNE UK site. The workshop that I attended was focused on uncovering the issues involved in setting up a Type 1 Diabetes service based on DAFNE, and was imaginatively titled “Commissioning for Type 1 Diabetes: an intergalactic extravaganzaâ€. The aim of the session was to document to the ruler of a newly discovered planet (ENFAD) the requirements for a Type 1 diabetes service, focusing on five key phases: diagnosis, first year after diagnosis, the DAFNE course, first year after DAFNE and ongoing care and each section was further subdivided into glucose and non-glucose considerations. Participants were invited to discuss and compose a list of standards that each patient would get in each of the five phases, given unlimited resources. Common themes were: 24/7 access to DAFNE-trained educators, consistent care wherever you were in the country, as well as many others. We than had to decide where and how these services were going to be delivered, and it was decided that the key people in the management of Glucose-related issues would be the Diabetic Specialist Nurses, supported by Specialist Dieticians and Doctors, whereas the Non-Glucose related issues (foot screening for example) would take place in Primary Care. The aim of the session was to give attendees an insight into the difficulties and challenges in setting up a Type 1 Diabetes service based on DAFNE, and as it turned out there is a lot to think and work with which isn’t always apparent to the DAFNE Graduate. After a wrap-up and review of the workshops, the day was over. It was very enjoyable to meet and network with a wide variety of DAFNE stakeholders. Furthermore, it was great to hear all of the positive feedback and suggestions for new things to do with DAFNE Online, and I’m grateful to DAFNE Central for inviting us along. |
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Jun 15, 2010
Simon
574 posts
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Topic: Site Development / Online BG Diaries Hi Derek - added that one for you.Thanks, Simon |
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Jun 15, 2010
Anil
39 posts
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Topic: General Discussion / Anyone else having problems obtaining BG Test strips from their GP? Hi,I'll be seeing my DAFNE team tomorrow, I will take up the test strip issue's with them and see what they can do to help, Thanks for you help! |
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Jun 15, 2010
Lynne Greenh...
3 posts
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Topic: General Discussion / Anyone else having problems obtaining BG Test strips from their GP? Hi Anil,I would contact your local DAFNE team and let them know about the problems you have been having getting enough test strips on prescription from your GP as they may be able to contact your GP / write to him or her to explain why you need more strips than their average diabetic patient. Also the difficulties that some people are having getting the test cassettes for the new Accu-Check mobile meter, may be because when these are prescribed, you get 2 test cassettes at a time (equivalent to 100 test strips, or 2 pots of 50 strips), hence the seemingly higher cost to your GP. Also different GP's computer prescribing software are set up differently, meaning that when your GP types in ' Accu Check mobile test cassette' he or she can't find it. Accu-check advise that it may be alternatively listed as either 'mobile test cassette' or 'mobile calorimetric test cassette'. I hope that this helps. |
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Jun 15, 2010
Sallysquah
1 post
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Topic: DAFNE Online Mobile / Rationale - Please read HiI have an iPhone and would like to give mobile DAFNE a chance. Let me know what I can do. All the best Sal |
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Jun 14, 2010
Derek Brown
32 posts
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Topic: Site Development / Online BG Diaries Simon,I was wondering if it were possible to add a "just before driving" option in the drop down menu. I have been choosing other and putting it in the comments but this has made it look rather messy over time. It's not an urgent request, just one which would be helpful. Thanks, Derek |
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Jun 13, 2010
susieh
3 posts
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Topic: General Discussion / Holidays and Insulin HiI can also recommend the Frio bags. I use them whenever I travel abroad - to hot or cold places - because they keep insulin at a consistent temperature. Unlike Stew, I have to admit that I have never put my insulin in the plastic bags when flying. I use the Frio bags and just tell the checkin people and airport security that I'm carrying insulin and needles and it's never been a problem. (And I also carry a letter from my GP with my passport that confirms I'm insulin dependent.) It all helps to avoid hassell when you're off for a spot of rest & rehab! |
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Jun 13, 2010
Stew B
123 posts
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Topic: General Discussion / Holidays and Insulin I've just come back from a bird-watching holiday in Spain, where in the steppe area near a place called Belchite the temperature peaked at 41 deg! We were camping, so my insulin was in the car all day (resembled an oven when we returned to it!). I used a Frio bag (as I have for several years) and my insulin came to no harm - happy to recommend it. Because of the rules about putting liquids in a clear plastic bag I didn't "activate" the bag until we arrived at our first camp site.Stew |
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Jun 12, 2010
Pol
2 posts
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If i could live on chocolate, kebabs and burgers i'd be happy for the rest of my (probably quite short) life. I work for a major chocolate manufacturer and the temptation is right in front of me every day but i suppose a couple of squares now and then is ok.....at least i've convinced myself that that's the case. |
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Jun 11, 2010
Mike Dagley
12 posts
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Topic: General Discussion / "Balance" letter about injecting in public Hi Everyone,There seems quite a consensus on this as is no surprise. I have been a diabetic since early 2009 and it takes a bit of adjustment to get used to the new regime of injections and testing etc. My view is that I have no choice about it and that since I am likely to be doing this 4-5 times a day forever means that I cannot afford to be squeamish or scared of getting on and injecting when I need to. I don't want to draw attention to myself as it is embarrassing. But I made the decision early on to be confident and just to do it, (this is on the proviso that I only inject into my tummy). It has been much easier to manage my condition as I am not ashamed of myself. I sometimes hide away in particular circumstances as it is just easier to do so, eg when at a funeral this afternoon - it seemed the right think to do to go to a quiet place. But normally I am fairly upfront and if with people I ask if they are OK with it as a gentle warning. I don't offer to hide away. I just them to have opportunity to turn away if they are so bothered. Nobody has complained yet. Another reason for my actions is tat I am always travelling for work and I am often involved with leading groups in events and meetings. My work is volunteers. I am upfront with them and explain what I am doing. I don't really have time to find a place to hide away. My work means that I might need a test or a jab at places diverse as railway platforms, on trains, in the middle of a long meeting, during cycle rides, on work parties etc. What normally happens is that most people don't notice it and some are curious and others just acknowledge you by saying that they recognise it as something someone they know does. Lastly, I believe that we as diabetics are protected by the Disability Disacrmination Act 2004 (?). In short we cannot be asked to hide away to give us our lifesaving medication. Imagine the life we would have if it were otherwise - pretty intolerable - and do you kike the idea of hiding away in a toilet everytime? I certainly don't and toilets in many places are not that hygienic. I am still new to this and I am doing my best to make light of it and that ploy seems to work and helps others not to feel anxious on my behalf. |
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Jun 11, 2010
Mike Dagley
12 posts
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Topic: Questions ? / elevated Total Bilirubin levels Hi there,Just feeling round for some guidance. Not been to GP to discuss this but intend to. I had my HbA1c test in mid May and only just got the results back last week (after pushing my local clinic to release them to me. Not as easy as it should be). However my question is about something which showed up in my results. Not seen it before, (every test seems to bring with it some new facet of medical knowledge that I am unsure what to do with!). So amongst my reasonably positive results for bloods I came across Bilirubin. New to me. I see the range of expected levels are 1 - 20 umol/L. My result was shown in bold as it is without that range at 26. Is this significant, does anyone know? Just on the numbers and how they read it seems alarmingly high. Maybe I am sick with something new? Maybe it is just a number which interests medics. No one has told me to rush to hospital for tests so I presume that having been screened that if it was significant that 'they' would have alerted me. Just so you know I am a diabetic since March 2009 so still an 'infant' patient. Cheers Mike |
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Jun 11, 2010
Anil
39 posts
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Topic: General Discussion / chocoholic!!!!!!!!!!!!!!!!! Im sure we all like chocolate!! Just check the carbohydrate count, and make sure you take the right amount of insulin.... and dont go overboard, Even for non-diabetics, too much chocolate can have a negative impact on the body, not to also mention getting fat!,I love my chocolates, and eat some every other day, but i try to balance it with a healthy diet and exercise. I'd do a 30 minute run and burn off 300 calories.. and then say to my self, "Now I deserve to stuff my face with chocolate!"... lol!... everything in moderation, but the occasional "choco-fest" isn't bad I guess, as long as you MATCH THE INSULIN, and get it right. |
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Jun 10, 2010
Simon
574 posts
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Nope, not at all! And none of that cardboard-like diabetic chocolate either, only the real thing will do! |
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Jun 10, 2010
jayne
2 posts
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Topic: General Discussion / "Balance" letter about injecting in public I am quite comfortable about injecting in public after all it is life saving medicine. The nurse in question should be more tactful and respectful . Sometimes its just not convenient to go to a toilet , i try to be as quick and discreet as possible and most people dont even notice. |
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Jun 10, 2010
jayne
2 posts
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Am i the only diabetic chocoholic in the world?!!!!!!!!!! |
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Jun 10, 2010
Prayer4aCure
6 posts
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Topic: General Discussion / Prayer4aCure Thank you for taking the time to look at the story & I wanted to say I really appreciate your post because this sounds how I felt after I watched this myself, it was the first time I have ever felt there really was hope of a cure in my life time. The professor who has spent 50 years of this life dedicated to this cause really moved me because he was moved to tears with this breakthrough himself. Over the years I have watched many articles on a cure & like most of us probably didn't take much notice "false hope" thing. I do think this gives us very good reason to think about taking better care of ourselves, we never know what may be around the corner, I have learned it dosen't always have to be a negaitive/bad thing around the corner! I am working in a wellness centre at the moment (crystals, mediitation, massage, alternative therapies, self healing - mental emotional & physical & personal growth etc, & I am currently studying hypnotherapy & psycothapy) so I am big on the 'positive vibration' thing nowadays particularly in relation to healing & good health & focusing on the good things in life! I am much more open to methods of healing & into listening/learning what I can do to help myself to heal & be well these days... Thanks again, I appreciate that you took the time to watch it, may we all stay positive about the future & remember to take good care of our health in the meantime tahnks for pointing out that really is vitally important! Thank you for helping me to see that I may have given the impression that self-care is not important anymore when its really quite the opposite very good reason to improve our management & self-care! Stay well, take care - Sue J |
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Jun 9, 2010
Anil
39 posts
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Topic: General Discussion / Anyone else having problems obtaining BG Test strips from their GP? Yes, Hopefully I think ill get their in the end, Im seeing my DAFNE instructors next week, so hopefully they can also speak to my GP (again) and sort it.Just kind of worried about others in the same situation, because when you think about it, this is kind of a "easy" way for the NHS to save abit of money, I mean you hear about it on the news all the time, "NHS budget deficit", "NHS making cut backs" and stuff, Just hope it doesn't go on like this for all our sakes, |