DAFNE – by Andy Broomhead

As part of the REPOSE trial I talked about last month, I recently attended a DAFNE course. I’ll be honest and say that a couple of weeks beforehand I was still pretty sceptical about attending. Not so much because I didn’t think I’d get any benefit from it, but more that I’d never been given any information about what DAFNE was beyond “it’ll help with your carb counting” and couldn’t understand how it was a five day course.

That said, after I’d had the pump on for a few days, I was really eager to get started and by the time the course started I honestly couldn’t wait. I didn’t feel too apprehensive at the start, as I’d already met half the people on the course when we’d had our pump induction, and I knew that everyone there was in the same position as I was.

I thought the DAFNE course (Dose Adjustment For Normal Eating) itself was very well structured. We followed a daily timetable with 4-5 sessions per day, building on regular daily topics such as insulin dose adjustment and carb counting/nutrition as well as discussing other topics such as alcohol and exercise.

For the afternoon session on the second day, we were invited to bring along a family member to give them the opportunity to see what the course entails, and to speak openly about their experiences of living with someone with diabetes. I think that helped a lot as it allowed us to reflect on what those we love have to deal with, which I would guess is a point of view we don’t often stop to consider. I think that afternoon worked really well and having everyone participate in the exercises was great.

What I found surprising (and a tad embarrassing) was the amount of the history/biology about diabetes that I either didn’t know or that I’d forgotten. While I suppose it’s all a matter of personal preference, I enjoyed the sessions that touched on that information as I felt like it provided a great base for all the other topics we were discussing.

There were, of course, some more difficult sessions, and the one we spent discussing the long term complications of diabetes could have been uncomfortable to talk about. We spent the time in two teams, playing a game of which complications could be specifically diabetes related, how they were caused and what could be done to prevent them. It lightened the mood and allowed us to learn at the same time.

I think as a group we all agreed that being in a safe, open and honest environment with people all in the same situation was one of the best things about the week. As I may have mentioned previously, I’ve not actually met anyone with Type 1 diabetes before and so to be able to share experiences, tips and frustrations with a group was such a positive thing. I was also relieved to find out I’m not the only one who sometimes forgets to change needles and lancets as often as I should!

As part of the course (and over the next two years as part of the trial) we are all recording our BG readings, carbohydrate portions and insulin doses on a daily basis. We began and ended each day with a review of the numbers. I think that really helped to build a great spirit in the group and allowed us to share advice with each other. It was pretty nerve wracking presenting your numbers back to the group for the first time, but by Friday, it was an experience we’d all got into and were going to miss quite a lot.

Being in that environment gave everyone a lot of confidence to speak up and discuss their own situations without feeling judged or under pressure. That similar feeling when sharing BG levels (some not always the numbers you’d hope for) was valuable in discussing our progress.

It would be remiss of me to talk about the course, the environment and the structure that allowed us all to benefit so much from the week without a mention for our DAFNE Educators. We were lucky to have three Educators supporting our course all week, two diabetes specialist nurses and a dietician. Their enthusiasm and encouragement kept us going for the week and I personally think they did so much to help foster the environment that allowed the course to work so well. Thank you Carolin, Val and Val.

After a full week using the pump with insulin I’m starting to get accustomed to it and DAFNE has put me in an excellent position to feel confident using it and adjusting my doses where necessary. On a personal level, one of the hardest things I’ve had to do is learn to curb my desire to try and fix everything at once and adopt a more patient and measured approach to fine tuning my regime. I’m not quite there yet, but having the confidence and knowledge to be able to make changes should hopefully mean I’ll have all my BG levels within target very soon.

As a final word, I’d encourage anyone to follow this link to the DAFNE User Action Group’s e-petition and sign it to lobby for a centrally funded diabetes education programme. Studies have shown that not only does education help diabetics manage their condition with better glycaemic control and fewer hypos, but that the education will effectively pay for itself within five years. Please take the time to follow the link and encourage as many others as you can to do the same.

Structured education is something that your diabetes healthcare team should talk to you about, and they should help find a suitable course near to you. This is actually one of the NICE guidelines that outline the care you should be getting as someone with diabetes, and it also features in Diabetes UK’s 15 healthcare essentials.

Whilst I may have been sceptical before I started, I’d now say I’m a huge DAFNE advocate! I’d be keen to hear on your own experiences of diabetes education courses, DAFNE or others.

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I attended my DAFNE course almost 10 years ago and I can’t remember how I managed my diabetes before that?! I have successfully had 2 healthy daughters since (I also remained healthy throughout pregnancy). I was also embarassed that I didnt know that much about diabetes even though I’d had it for over 20 years by then! The only negative about it is the fact that I can never seem to get hold of a DAFNE nurse on the phone in my city which leads me to plod on, on my own if I have an issue which is frustrating. The big and most amazing experience of the course was to see another member of the group have a hypo. It was a tiny walk to get to the table to get a juice/biscuit but in her haze she walked right around the room to get there. Not good for her! but to see a mirror image of yourself having a hypo – amazing.

I think that’s the same for my PCT by and large. The difference with this one was that, because it’s part of a clinical study, the criteria was that you’d not previously attended a DAFNE course and didn’t mind whether you were randomised to a pump or stayed on your injection regime

I’ve done DAFNE twice now – one pre-pump a year after diagnosis and then 18 months ago as a pump user. I must say that DAFNE has been my saving grace and given me the confidence to manage my own disasters – experiment and get it right most of the time. It has also given me good like minded friends to turn to who know exactly what I am talking about. It also forms a good and trusting relationship with the DAFNE trainers who you can turn to at any time after the course. With me it is a matter of remembering everything that was taught, and refresher courses are a good idea too. Whether we like it or not – this type 1 diabetes is time consuming and we must pay careful attention to detail as even eating a biscuit makes a big difference to my sugars as does running up the stairs at work!! something non diabetics can’t understand. The most difficult issue for me was getting a week off work!! but I negotiated this successfully twice, however I can easily see what a barrier this could be to others who do not have understanding employers.

I feel the same as Andy.Igot a lot out of my course and more information about diabetes to the fact i wish my father was alive tell him that he could do nothing about me getting diabetes .he went to his grave blameing his self because a great aunt had it and people say that it misses a generation and gos to the next which was me .
But the Nurses explained that its some thing to do with the nurone system.
All so now every thing we pick up the first thing we do is look at the carbs and work my insulin out to suit.
I think it was the best decision i ever made with my diabetes and feel it should be made available for ev ery diabetic

Done the course 3 years ago and have never looked back since. DAFNE was a great help. My control has majorly improved and I feel a lot healthier. You have to agree that having highs of 28.3 back then and 10.2 now is an improvement :).

Part of the criteria in my PCT is to have completed a DAFNE course before you are even considered for a pump, not afterwards.