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May 27, 2009 JayBee 587 posts	Topic: General Discussion / Introductions Hello everyone. My name is Jennifer and I'm 24. I was diagnosed in March 1989 at the age of 5 and so I've been diabetic for roughly 20 years. When I was 20 years old, I felt my control was starting to slip and I couldn't understand why. I think I was doing some form of "counting in a cloud" because I'd say "okay, sandwich is about 4 units" and what not, but it had reached a point where my memory was letting me down or my body was changing now the hormones were calming down (I'm becoming an old lady as the doctor put it haha)..... and so I was introduced to DAFNE. To put it simply, I am so glad I was. I did my course in April/May 2009 so I'm fairly newish. I only had my first post-course check up the other day. Luckily my HbA1c has usually been okay, but with DAFNE, I now have a lot better understanding on what's happening with my body but I still have some issues to resolve... for example, after the recent check up, I've begun looking at splitting my Lantus dose into two injections because it appears to not be working over the 24 hours. Despite issues like that, I do feel I've got my control back again and I'm definitely a lot more confident and happy for it. It's certainly good to see some other people around my age on here too. When I attended my course, I was the youngest by quite a bit with so many of the others having complications that I just simply did not have (nor want to have) and some having many years on top of my little 20 years of experience! I do appreciate the experience though, but it's definitely good to see some similar ages too. ^_^ Another perk about it as well is the fact DAFNE makes explaining to loved ones a lot easier. Naturally my boyfriend is very curious and keen to learn more about my condition so he can help me if I need it and DAFNE has been such a help to us with that. I now have a lot of faith that my loved ones will be able to cope and understand things a lot better now. I love Nigel C's comment: "I no longer see diabetes as an illness, but more of a game - the better I play, the lower my HbA1c! Best of all, I'm in control!" Has inspiration written all over it! <3

May 27, 2009 JayBee 587 posts	Topic: General Discussion / "Balance" letter about injecting in public Like most of us that have replied, I do too inject in public and I am discreet about it because quite frankly, I'm not interested in drawing attention to myself with it. If I did, I'm pretty sure people would find that more annoying. It's part of my life; if they don't like it, that's their problem. The people who you're eating with should know better in the first place anyway.

May 27, 2009 Becky 7 posts	Topic: General Discussion / DAFNE in peril at the Wirral Hi everyone! I've just had this response from Julia at the PALS office. See what you think fo this one!! I personally think I have been fobbed off! Dear Rebecca, Thank you for your emails, sorry for not getting back to you sooner. JonEke passed your enquiry onto one of the Medical Assistant DivisionalGeneral Managers who has advised that following a review of the 2 programmes of type 1 Diabetic training that the Trust Diabetes team deliver( DAFNE and WHISTLE) the Medical Divisional Board took the considered decision to stop DAFNE but continue to deliver WHISTLE. This was based onthe evidence that the 2 programmes offer the same course content, with similar outcomes. I hope that this answers your query but if I can be of any further assistance please let me know. Kind regards Julia PALS Office

May 25, 2009 JennyS 7 posts	Topic: General Discussion / Do periods mess up your blood sugars? Definitely!! - if you think periods give you a hard time wait for a) pregnancy and b) menopause LOL I've never heard a health professional deny it, though, and it's a YMMV one. Good luck!

May 25, 2009 herbert52 1 post	Topic: General Discussion / "Diabetes set off course" Balance letter bert, dafne graduate march 2009. Sandwell pct. I am about to email balance magazine. Dafne has really helped me to understand how much insulin per meal I should have. To an excellent success rate. I have read balance since diagnosis in 1992. Helpful, but not as much as dafne. I agree that following dafne is more time consuming than guesswork. However, I think I am worth it. Due to dafne, my quality of life and life expectancy should improve over the next few months/years. Note, I have metformin tablets to counteract insulin resistance, prescribed by my diabetes specialist.

May 25, 2009 JennyS 7 posts	Topic: General Discussion / Does Dafne work? Goodness! The BDEC course, BERTIE, is one of the only 2 (as far as I know!) 5-star 100% ticks all the correct boxes/meets all the required Guidelines etc 'Approved education courses for Type 1 Diabetics' in the UK. The other one is of course, DAFNE. The other Health Authorities do not deliver BERTIE but 'Local Versions' for the simple reason that they aren't allowed to call it BERTIE despite having undergone intensive training by the staff at BDEC and having had to have all their course material approved by them beforehand, then having their actual training checked out and given the OK by BDEC staff. In other words, almost exactly like DAFNE. The reason why some Authorities choose to opt for the BDEC version is purely down to Â£Â£Â£Â£Â£Â£ and they usually have to rope in any number of pharmaceutical co's, pump and meter mfrs etc to sponsor them, in order to deliver the course in the first place. Also I think they don't have to take quite as much time away from the office to get the training, or perhaps it is more spaced out, having been sepcifically designed to help those partic Authorities as much as poss. This doesn't actually impact on the training given, it only enables it TO be given in the first place. However, there did seem to be refreshingly easy access to quite a fair number of different pens, needles, meters etc for those of us wanting to try different gadgets. LOL My course was delivered for one day a week over 4 weeks - this is usually a lot more palatable to employers so can in fact make it a lot easier for anyone who hasn't got any or much spare holiday should they decide it ain't their problem and refuse to give you the time off. Despite a nice official letter saying how much it would potentially help them - there is absolutely nothing anywhere that says an employer has to give you the time off for this type of training - so some of em just refuse point blank. Plus it gave you a chance to try what you'd learned for several days. This is good because if you happen to be taking Lantus, any changes usually takes a few days to kick in. On our course we were on a wide variety of different insulins, including one lady using animal insulin (she's resistant to 'synthetic' ones) and nobody had to change anything if it wasn't mutually wanted/necessary. We then each brought a detailed Food, activity, mood, BG reading, Insulin diary for 3 of those 6 intervening days to the next session - so we did all the things we would reasonably expect to do over a 4 week period, including kids birthday parties, nights out with mates, dancing, running, decorating, gardening, being lazy - whatever. Each of these was reviewed round the table. Most of us could spot what someone else got a bit wrong quicker than we could spot and understand our own. The last week after the first 3 or 4 I collapsed in hysterical laughter and eventually managed to tell em the diaries were all looking almost exactly like the ones I used to be so good at forging before my hospital appointments in my younger days. Turns out we'd all - except the newly diagnosed - done it in the past. The good news in two ways was; I had an HbA1c taken during those 4 weeks and the results appeared on the hospital computer on the morning of the last day, and the result was a 15% reduction in that taken 3-4 months previously! I'd been trying to carb count with the assistance of quite a number of people on a certain internet Forum for several months, and honed it all during those 4 weeks. Otherwise I think I'd have shot myself, finding how ill-educated I was about diabetes which I'd already had for 35+ years, begging for DAFNE-type training every time I visited a doctor - they lob you the insulin but then don't explain how to use it optimally. So you bumble along and muddle through. How am I even alive? I learned so much about my body. And yes - the on-line course is really good esp if they told you you were T2 originally then decided after (which was totally obvious had they bothered to spend the money on the proper tests in the first place but soon became apparent when nothing they prescribed worked at all, whereas as soon as you started on insulin your BG suddenly started to behave, but DAFNE in some areas is ONLY available to those whose records say Type 1 from the outset!!!) - this isn't me by the way, but the person I'm talking about is a member of this forum! BUT Not as good as a real course round the table with professionals and fellow diabetics. I think both courses are probably equally good. End of story - even the medics don't tell you you HAVE to do anything - you can as always, please yourself! Incidentally, I do know that people are referred to Bournemouth by GP's and Consultants all over England. So on the face of it, I do feel that this gives me a little clue that BDEC is considered by other Doctors to be a centre of excellence. And lastly, who exactly are my Diabetes team? A GP who doesn't seem to know anything much? a Consultant who I saw once? any of the innumerable, different sidekicks I've seen when I visit the hospital? who? (Since my CARBS 4 1 course, I do have a Diabetes Specialist Nurse who I've hung onto and do see on an ad hoc basis, but I have to make a Motorway trip from the City I live in to a nearby town to see her!) The friend I described cannot get a referral to a hospital clinic, so despite asking, has no access to a DSN either. (Your Notes say T2 so can't refer you, see the surgery nurse) (change em then? - No need!)

May 25, 2009 Pattidevans 6 posts	Topic: General Discussion / Does Dafne work? Just a final point from me before I leave the conversation. I think you will find that Dr Cavan is a little more than "a consultant". From 2000-2004 he was Chair of the Education and Psychosocial Care Section of Diabetes UK, and in 2003 with Joan Everett he founded the Type 1 Education Network of which he is now national spokesman.

May 24, 2009 marke 681 posts	Topic: General Discussion / Does Dafne work? Not sure why you think there are legal implications on questioning the background of BERTIE and David Cavan, where you not the people talking about secrecy and open-ness. I was merely stating that anyones opinion even a repsected consultant is just an opinion. I have looked at the BERTIE online site and indeed it does look interesting. It does contain a big discliamer though as I would expect and says if you are unsure consult your Diabetes care team. Which is basically my issue with online courses, you still need the support of your Diabetes team and this is the biggest issue. Its good to see an PCT website with so much information and one willing to provide an 'online' course. However I would ask why PCT's can't co-ordinate to make this kind of thing available nationally rather than just from an individual PCT's website. I'm sure 99% of Diabetics would never find this site on their own and thus make use of the information on it. I think this is also true of DAFNE as well by the way. I think I will bring to a close my comments on this subject now and let others have the opportunity to comment on the issues raised if they so desire.

May 24, 2009 Simon 578 posts	Topic: Site Development / Question: Sharing the online diary Hi all, One particular feature of the DAFNE Course that I liked was the fact that we all shared our BG Diaries with each other and commented on trends, ratios etc. This was a feature that was mentioned a while back (when the site was just a twinkle in our eyes) and so far we haven't done anything on it. I am revisiting this feature now, and would like to know people's thoughts on it. First of all, would you like to share your diary with others? Next, how would you like to do it? Some ideas I had: 1. Via the forums; you could create a topic, supplying a date range of diary entries which you would like to share with others, and invite comments via the usual forum 'reply' system. 2. As a separate function, so that others could view your diary in the same way that you do, and add posts to it. 3. Any other ways? Obviously, this would have to be an opt-in feature, as not everybody will want to share their diary with others. How then would you like to share it - the options are: 1. A yes/no toggle so that either all users can see your diary, or nobody can. 2. A group method, so that only DAFNE Graduates/HCPs can see it. 3. Only people in your region can see it. 4. Naming individiual users (e.g. your DAFNE Educator). As always we want to make the site useful to you, so your opinions on this are welcomed and encouraged. Thanks, Simon

May 24, 2009 TerryG 6 posts	Topic: General Discussion / Does Dafne work? I agree, Simon, that face-to-face courses are invaluable, for the reasons you mention. And while this is to be welcomed for all T1s, sadly those without access to such a course may face the choice of no education, self-education, with the perils and pitfalls you mention, or some sort of reputable structured online education. I guess which of these is considered preferable is down to personal opinion. The sharing and questioning aspect is, in my view, absolutely key. And I see online forums such as this as an extension of the mini-network created on Dafne and similar courses, extending it from half a dozen other people to maybe hundreds. That's got to be good. Especially if the feedback helps improve Dafne's effectiveness at delivering education. For ultimately, I see the value of the Dafne brand as the innovative delivery and promotion of education. And I see its "research and study" as about enhancing this rather than devising innovative treatment methods. In fact all the factual material used by Dafne has been available, in one form or another including the internet, for a long time, and merely - well, actually not mere at all, as it's a great achievement - brought together within the Dafne package. Which is to be applauded. I won't comment on what has been said about BDEC and David Cavan because of the obvious legal implications.

May 24, 2009 Simon 578 posts	Topic: General Discussion / Does Dafne work? Lets not forget also that DAFNE and similar education courses are not just training material, they are a chance for people with Type 1 (or 2 in the case of DESMOND) to meet people with the same condition. This interaction with other diabetics which rarely happens in normal life is a fantastic opportunity to share experiences, learning from each other as well as the education team on better ways for managing the condition because lets face it, diabetes is something where you never stop learning; whether it is about insulin adjustment, how different foods/activities affect BG levels, or even about dealing with complications. It is this kind of interaction which is lost in online courses, and is arguably a very important factor. With regard to releasing the DAFNE materials on our site, they are published here to act as a refresher for people who have been on the course, who may have misplaced their handbook or would prefer to look up topics on the internet. They are not intended as a means of education, because as I mentioned above, DAFNE is so much more than reading a handbook.

May 24, 2009 marke 681 posts	Topic: General Discussion / Does Dafne work? I'm not dismissing the power of the internet, the problem is how do you know what to believe. Even 'intelligent' people can have problems with this, our natural inclination is to believe things that align with our own views even if they are incorrect. No disrespect to David Cavan but how much research and study undermines his online course. I have a huge amount of respect for my Diabetes consultant however that doesn't mean he is always right. I will check out this online course as soon as I get the time and I agree, as I said before, that all diabetics should have access to education to allow them to make informed decisions about how to manage their diabetes. My concern is this needs to be done in co-ordination with the Diabetes care team, so that if they have problems they can get help and backup. If something goes wrong and all you have is the internet for backup you could be in big trouble. There will always be 3 differing views on what you should do and which is right ? I also happen to believe that it is the NHS's job to use their budgets to educate Diabetics NOT make short term savings on education in exchange for long term larger costs of treatment for complications. On of the objectives of this site is to encourage PCT's to provide DAFNE training for all Type 1's. I would also support people trying to get DESMOND training, although that is primarily not what this site is for. My worry is if people get online training they will not get access to more intense training like DAFNE.

May 24, 2009 Pattidevans 6 posts	Topic: General Discussion / Does Dafne work? Mark I understand and respect your position. But looking back at some of the posts here from the peeps who seemed not to have the full DAFNE they have had some education, which is terrific. I have done the BDEC online, frankly if that is all you are to be offered then I can recommend it over and over again. I suggest you check out the qualifications of Dr David Cavan, Consultant Physician and Honorary Senior Lecturer at this llink http://213.105.192.75/bdec2/staff/index.shtml who has devised the online BERTIE course and furthermore has been my mentor. If people are not able to take DAFNE then I can truly recommend this course to them - we are all intelligent people and lets face it, we can look at the internet and make our own minds up. Before this I had to educate myself, so for the past 6 years my Hba1c has been under 5.7 not due to multiple hypos, but due to education even if self taught. Please don't dismiss the power of the internet, even though we all need to sift and ensure that our sources are bona fide.

May 23, 2009 marke 681 posts	Topic: General Discussion / Does Dafne work? it is NOT about secrecy, it is about backup and support. People who attend a DAFNE course often have radical changes made to their insulin regime. These are NOT the kinds of changes that can be made after reading some stuff on a website and trying it yourself. Terry may well have tried dose adjustment before DAFNE, I did too, however most people do not and need the support the course gives them to undertake these changes. There is no question of secrecy, if you have done the course you can have access to the course materials. If you have not we have been asked not to provide this material to people and for the reasons above we do not provide access. I don't think its worrying, I think it is sensible. We want to help people, not hinder them by providing information without the support and backup to apply it. I suspect you will disagree with this, as is your absolute right to do so, however since we have made a commitment to DAFNE central NOT to allow open access to the course materials we will not break this agreement. I agree that education is good, however any 'online' education should be treated with caution. Anyone can set up a website and give information with no control whatsoever. I have seen some truly amazing information given by seemingly legitimate sites that is just plain insane. For this reason I would treat all websites for what they are peoples opinions and NOT facts. The same is true for this site, everything in the forums is opinion and should NOT be treated as fact. We encourage everyone to contribute opinions but that is all they are.

May 23, 2009 Pattidevans 6 posts	Topic: General Discussion / Does Dafne work? Sorry I also neglected to say that there is significant research into whether or not the Hba1c is relevant. It is certainly now being very much considered (as a result of studies) that the post meal spikes have far more relevance to later complications than has been previously thought.

May 23, 2009 Pattidevans 6 posts	Topic: General Discussion / Does Dafne work? Having "only" done the BDEC online course I have to concur with TerryG. I have no issues with the DAFNE organisation making sure they are legally protecting themselves but that should be easily done with a disclaimer. The secrecy aspect has always been slightly worrying however. I have certainly felt in the past that this has led to a feeling of "the privileged and the denied", at the end of the day we are all diabetic with the same needs and for those intelligent people who are willing to educate themselves, why should they be denied a simple method of managing their diabetes? At the end of the day the DAFNE principles are applicable to anyone totally dependant on insulin, regardless of whether they happen to live in an area where it is on offer, or whether they have been misdiagnosed or whatever!

May 23, 2009 TerryG 6 posts	Topic: Carbohydrate Counting / Useful link for looking up CPs My top tip is the Collins Little Gem Calorie Counter, which only costs a couple of quid. Note, I DID mean the Calorie Counter, rather than the similar Little Gem Carb Counter. The former is much clearer on carb content per 100g than the latter, which often uses portion sizes.

May 23, 2009 TerryG 6 posts	Topic: General Discussion / "Balance" letter about injecting in public Just to add my complete agreement to everything that's been said. I think this nurse really needs to take a long hard look at her attitude.

May 23, 2009 TerryG 6 posts	Topic: General Discussion / Does Dafne work? I too saw very little change in A1c â€“ and yes, it is quite correct that because the A1c is an average it cannot identify whether bg patterns have been relatively flat or swinging from lows to highs. Only daily monitoring and judicious testing can do that. Interestingly,Dafne was created just before the first serious appearance of research into the effect of spikes (particularly post-meal). I think the academic trend is now moving much closer to seeing spikes as potentially significant in later complications. Obviously Dafne will evolve and I suspect this is one area that may come under review in the next few years. Certainly when I did it, post-meal readings were regarded as insignificant. I wonder if that will change. Having said that, and perhaps surprisingly, I do think Dafne works, if you look at it for what it is. For me it is the tools to manage your individual condition. How you apply those tools depends on where you set your targets. Certainly mine do include trying to keep post-prandial spikes as low as possible. I somewhat disagree with: "The idea of DAFNE is you DONT have to be so careful about carbs because you match your insulin too the carbs you eat. The only variables are how much background insulin and how much fast acting insulin to take, although I agree the best way is to keep testing and adjusting to get it right." It may work for some, but for many I suspect it will cause problems. Speaking to those on some education courses, I note that some dietitians are beginning to acknowledge that there is some merit in controlling carb intake if the individual wants to do so, if for no reason other than that large intake of carbs needs large doses of insulin which is then subject to much wider margins of error than at lower doses and may lead to poorer control. I think the headline "Eat what you want and inject for it" was certainly catchy and attracted people, but I think, in reality, most Dafne educators would be horrified if people chose to pig out on carbs and would underline that Dafne's strength is that it gives the ability to manage the level of carbs any individual feels comfortable with and gets the best bg figures with. And I hope you will allow me to say, in answer to "...the 'official' DAFNE people, we cannot give access to parts of the site because the information they contain is specific to their version of DAFNE. Understandably they don't want people who have not done the course to access this information, because if they follow it and have problems they could take legal action against the DAFNE people..." that I don't actually understand this at all and never did. By contrast to this frustrating secrecy, the highly respected and innovative Bournemouth Diabetes & Endocrine Centre (BDEC) has been running an online course for some time in addition to its local face-to-face training, which has been much copied by other health regions. Those I know who have done the online course (and some of these have done Dafne too) speak incredibly highly of it. Indeed it may even be ahead of Dafne in considering itself less a set of absolute rules and more a set of guidelines upon which better blood glucose control may be built by individuals according to their own circumstances.

May 23, 2009 Pattidevans 6 posts	Topic: General Discussion / Introductions Hello you lovely people, may I introduce myself please. I am TerryG's partner in the diabetes-support.org.uk forum. I have never met him in person, the nearest we have come in "real life" is a couple of phone calls, but he is a person I respect and he is a firm friend in real terms. I "know" Terry and he has helped me as much as anyone since diagnosis in May 2003. I should really not belong here because I am officially diagnosed as T2 and therefore do not qualify for DAFNE. However, I took oral meds for only 4 weeks before the medics realised they were doing nothing and I was then put on Novomix insulin. Because of my age I was diagnosed T2. I have educated myself, I have managed on insulin alone (with no meds) since June 2003 and achieved an Hba1c sub 6 ever since. I have no hope of a DAFNE course, because although it has now been decided that I am "possibly LADA" but that doesn't qualify me either, perhaps this doesn't matter. I am now on Levemir and Novorapid - soon, very soon, to go onto Apidra as the rapid insulin. What I am passionate about is education for people with diabetes. I am truly passionate about everyone having the best chance they can to manage the disease without complications. Education, education, education. For all people with diabetes, not just T1s but everyone.

May 22, 2009 TerryG 6 posts	Topic: General Discussion / Introductions I'm Terry and a graduate of the inaugural Croydon Dafne course held in May 2007. Diagnosed in 2003, I had the same level of education about the condition that most people get - 10 minutes on how to inject, some fixed doses of mixed insulin and a handful of NHS leaflets on eating for a healthy heart. Before long I was using the internet to solve treatment conundrums and tap the experiences of other diabetics, notably on the ASDUK newsgroup, which has since descended into pretty much of a bun fight, though there are still pearls to be found amid the argy-bargy there. This led to me pushing for basal bolus and to dose adjustment according to carb intake, establishing the appropriate basal level etc. What I hadn't realised is that I was so unusual and that many other T1s had never, apparently, got past those initial fixed doses and restrictive insulins. So, for me, Dafne wasn't the Road to Damascus moment it was for others on the course. But it was significantly valuable in formalising a lot of knowledge picked up randomly elsewhere. And perhaps most significantly, it represented a rubber-stamp the professionals, particularly GPs, accepted, suddenly allowing me to have some sort of recognised input into my own treatment. My passion for spreading peer knowledge led me into online forums and, when one of the better ones was threatened with closure, I became one of the founders of a replacement, in diabetes-support.org.uk. I believe Dafne (or one of its clones, such as Bertie) is an absolutely essential starting point for any newly diagnosed T1. And, as with all such education templates, I think there is huge value in the likes of this forum where shared knowledge can enhance individuals' ability to adjust and refine those principles to meet their own targets and particular needs. I look forward to getting to know you all here.

May 22, 2009 Simon 578 posts	Topic: DAFNE Online Mobile / Mobile Feature Requests Hi Stefan, I've been developing the functionality you requested, and there is now a link to view the full site when you access the site using a mobile device. If you do switch to the full site on your mobile device, you can get the mobile site back using the link at the bottom of the site, to the left of the Help/Contact links. If you do have any other features of the site you'd like 'mobilised' then let us know and we can work on it. Lizzie - thanks for the feedback/praise, much appreciated! Simon

May 22, 2009 marke 681 posts	Topic: General Discussion / Meeting up after the course yes hopefully we can help. One of the aims of this site is to help graduates continue to enjoy the benefits of DAFNE, one of which is to meet a group of fellow Diabetics. One of the plans for the site is to provide areas of the site specific to DAFNE centres so the people running the course can keep their graduates informed and graduates from the same centre can stay in touch. welcome to the site and I'm glad you enjoyed the course as much as we did !

May 22, 2009 marke 681 posts	Topic: DAFNE Online Mobile / Mobile site released we have now added the forums to the mobile site. Can people PLEASE try accessing the site on their mobiles and feed back any issues. I'm sure there will be some since mobile phone browsers vary greatly in their functionalilty. It would be good to know if it does work on a wide range of phones.

May 22, 2009 jay70 1 post	Topic: General Discussion / Meeting up after the course Hi All Just finished my DAFNE course today!!!!! Brilliant week and after having diabetes for nearly 30 years I am feeling more comfortable and confident than ever. This is in part down to the group of people that did it alongside me, we have all exchanged email/mobile numbers and even been out for a pint this evening!!!! We intend to be around for one and other for support and help and meet up on regular intervals to catch up. Also glad I found this site as maybe this can help to