Experience 1 Where I heard of DAFNE In November last year I was having a drink with a friend in the bar of my local sport centre. During the conversation, he mentioned that he was diabetic and that he had just finished a week doing a DAFNE course. At that time I had known Andy for a couple of years and aside from playing badminton competitively for our local club I knew him socially as well. When I revealed that I too was a diabetic we thought it was quite amusing that neither of us had mentioned it nor realised! With hindsight I guess this is not too unusual as most diabetics don’t openly advertise their condition for fear of the ‘tea and sympathy’ response that most people naturally give (you take six injections a day? Wow! You must have it really bad!!) At that time the term DAFNE, dose adjustment for normal eating, meant nothing to me but it did stick in my mind that Andy seemed very enthused by what he had learnt and the way he had been re-taught to deal with this condition. I met Andy again a few weeks later at a Christmas dinner and during the evening I heard him talking to several people about diabetes with the same air of confidence. During a chat later in the evening I asked him whether ‘that course he told me about’ (DAFNE) had really helped him. I was again struck by the seemingly lifting effect that DAFNE had upon him and his positive attitude. During a lengthy explanation (diabetic to diabetic?) he talked about the improvement in his control, the reduction in his insulin intake and various aspects of his life that had unexpectedly improved. He also urged me to find out more and see if I could get onto DAFNE. In my professional life I run my own business. Partly because of my own condition I have over the years become self-dependent and diabetic care is the only area of my life where I am reliant upon others. This tends to shape my thinking, therefore I recall treating Andy’s view of an unrestricted diet and greater flexibility in the way he led his life with a degree of scepticism. During the past 20 years I have been on different insulin types, given varying and contradictory advice on diet, complications and other peripheral matters. I have been advised that my control is good and then not so good (without any understandable reason). In short my experiences have also led me to be suspicious of anything that might be the ‘latest craze’. From this start point I started reading about DAFNE in an attempt to see what substance there could be behind Andy’s claims. The idea that this was a new craze was soon dispelled when I found out that DAFNE was in fact an import from Germany, where for the previous 10 or 15 years it was the way that all diabetics had been treated. The more I read the more convinced I became that DAFNE had more important implications for me personally than just being able to eat a jam doughnut! Application Process During the routine visit to clinic 12 in January of 2003 I asked about the DAFNE course. I was given an application form and told that there was a long waiting list and that they would get back to me with details of the next presentation talk. A few weeks later I was sitting in a lecture theatre along with 30-50 other people being told what DAFNE was about. The informal Q&A gave rise to some obvious questions and frankly some obscure. But overall the presentation was positive and I thought encouraging to those who were interested. For some reason I had expected that following this discussion we would get to the nitty-gritty of fixing a diary date to go on the course. I was quite disappointed to find that the wait list was (at that time) six to eight months and that most of the places for 2003 were full! I filled out my application, left and parked the whole idea of doing DAFNE for another year or so. A couple of months later an envelope dropped through the letter box advising that I would be on the October DAFNE programme. From the application it worked out that the wait was about seven months and eleven months from first hearing about DAFNE. Coming from a back ground where delivery of new ideas and products is measured in days or weeks this still seems painfully slow! DAFNE At the start of the DAFNE course I had clocked up 170,350 hours as a type 1 diabetic (well ok +/-50 hours!). During that time I have appointment record cards indicating 31 visits to clinic 12. With an average duration of say 1 hour [generous] and excluding wait time, this equates to a mere 30 hours in front of a consultant or nurse. The term ‘in front of’ is quite important, as I have always thought of these visits or the ‘annual review’ as a passive process, where measurements are taken, praise is given or knuckles are rapped! In the short consultation time available during these visits, even the best doctors can only attempt to impart professional wisdom in bite site proportions. My attitude: The idea of spending 30 or so hours, in one week, with people who could identify directly with the issues of diabetic life management, was an exciting and for me unique prospect. If nothing else came out of the course I went in thinking this would be valuable. Day 1 This is the most important day as it sets the framework for the whole week. The session kicks off with a round table introduction of who we are and what our expectations might be. The confidentiality of our discussions is also mentioned and possibly for this reason the group seemed to talk freely and honestly. A summary of group expectations is written up and stuck to the wall where it remains for the duration. This initial discussion or introduction puts everyone at ease, as it becomes more and more obvious [to my relief] that our individual expectations are common, namely: •   Eat what you want when you want – how? •   Improve control of the condition •   Work out a structured framework around which we can lead a near normal or flexible lifestyle •   Improve our understanding of the condition and eliminate the guess work •   Independently manage our lives in circumstances such as illness •   Review long term health issues such as complications During this early discussion it also becomes clear that there is a diverse range of lifestyles and in my group a sum total of 130 years of diabetic management! The remainder of the first day is an intensive review of issues such as carbohydrate counting, how insulin works, metabolic monitoring and general discussion about issues that directly contrasts the DAFNE approach to our previously fixed regimen. By the afternoon close any thoughts about how this course could possibly be ‘stretched’ to 5 days are quickly dispelled, as time has flown by! Having said this though the way these issues are tackled by Dawn, Jeannie and Sean using props, informal group discussion and structured presentation, converts this potentially complex and confusing subject material into a digestible format. I was not aware of anyone in the group lagging behind or struggling. Day one finishes with a review of individual blood glucose targets by the entire group. In common with the others I was looking forward to returning for day two! Day 2-5 The following days allow a similar format, starting with reviews of blood sugar levels whilst away from the class and group input into any adjustments in the level of insulin’s taken or other observation relating to diet. Each day covers mandatory subject’s specific to the DAFNE syllabus. As with day one the potentially complex issues located in the DAFNE syllabus are broken down and the groups’ full participation ensures that we understand and continue to move along at the same pace. The DAFNE tutors also recognise that many of us are set in our ways and that breaking the habits of 20 or 30 years requires a leap of faith. Again this is handled well and whilst throughout the course I heard people say that the old way did this or seemed better than that – no one actually considered going backwards! As each subject is covered it becomes clear that before DAFNE most of us were ‘winging it’ guessing how much insulin to take, over compensating for exercise, under compensating when snacking or generally oblivious to the reasoning behind key measures of our condition. Each day finished with a further review of the day’s blood sugar levels and final thoughts from the group. As the week went on and our understanding of the course material increased, analysis of the data became more accurate and corrective actions became clearer. Post DAFNE thoughts Firstly I should state that I am a brand new DAFNE graduate. The course is still fresh in my mind and after just a week, whilst I am tackling life in the normal way, DAFNE is now having an influence (and yes that first ‘guilt free’ doughnut was great)! I obviously cannot make any long term observations about the effectiveness of DAFNE but I am very optimistic. I have attended many courses in my career some good some bad. By contrast to this previous experience the DAFNE course successfully engaged my complete attention from beginning to end and exceeded my expectations. I am not alone in this observation. Why? •   The course is completely relevant and recognises many aspects of life as a diabetic. •   The course is run in a structured way but in an informal setting. Whilst this may sound contradictory I am really reflecting upon the interaction of the group, its tutors and the effective flow of information. •   The group’s attitude to the course throughout was positive. The mix of backgrounds, experiences and age range was just right. Of the eight in my group it is fair to say that no one ‘hid in the corner’ and all were willing to share. •   Personally I gained an otherwise unknown perspective on the way my body should work and the way that I had been treating myself previously - sometimes dangerously (never new about ketones!). •   The explanation of relationship between food intake, insulin needs and metabolic activity was highly valuable and provides me with the basic understanding to view my actions in a measured and informed way. The guesswork is taken out. •   The frameworks that I need to independently self regulate my actions are in place. My attitude to the previously passive experience of going to clinic 12 for a review has radically changed. I now want to know what my test results are and explain to the professionals what I am up to (at last meaningful dialogue?). •   The prospect of being relatively free of a ‘fixed routine’ is a concept that only a diabetic can fully understand, but this is extremely important. As the course progressed I gained confidence that this is now possible. •   Equally the possibility to interact socially, eat at the same time as my family or friends and not appear restricted or isolated is also important. •   In my own situation I can reason why for example I am overweight (previously too much insulin) and have already adapted to compensate for this ‘side effect’ on my own. •   The word empowerment was used a couple of times during the week. This word is somewhat over used in modern life. I actually finished the course feeling empowered – I’ve taken control of a condition that had previously controlled me. Final Observations I mentioned at the beginning my friend Andy. I met up with him a few days ago to discuss the course and the impact I believe it will have upon me. I was pleased to hear that his control had significantly improved and quality of life was better. A year on his over-enthusiasm had (thankfully) reduced but it is obvious that DAFNE is now part of his life and his ‘matter of fact’ approach simply reflects the normality of the way this helps control his condition. As for me…. Well I guess I get to pick up from Andy and risk boring friends and colleagues at the next Christmas party! Who knows maybe one of them is or will become a diabetic! I have already gained enough confidence to openly talk about my condition, the course and the impact I believe it will have on me. Concern My personal optimism is tinged with a degree of puzzlement as to why DAFNE is not publicised to the wider diabetic community and only ‘open’ to limited numbers. My GP practice even asked for feed back! Have I just joined an exclusive club or an experiment? The Addenbrooke's Course is run once a month usually with eight people. This equates to less than 100 DAFNE graduates a year in Cambridge and probably less than a thousand nationally. At the current rate of education, both locally and nation-wide it would take decades to get type one diabetics through the system? My Children have a 1:25 chance of becoming a diabetic in their life. I would like to think that they would have immediate access to DAFNE as those say in Germany. The health carers I have spoken to are convinced of DAFNE’s benefit, those that completed the course with me feel the same. It seems bizarre then that the waiting list, which I heard is now more than two years, is talked about in frustrated terms and seems to be merely a subject of ongoing discussion rather than concrete action. It would be a real shame that whether because of funding or operational constraint DAFNE’s progressive approach could not soon become available to the majority. M Smith DAFNE Graduate October 2003