'DAFNE was a defining moment in my struggle to understand my condition - it changed my life in every way'
Members of the DAFNE Users Action Group talk about championing an education course that has changed their lives and given them the freedom to manage their diabetes rather than let it manage them.
They are graduates of DAFNE, short for Dose Adjustment for Normal Eating, a five day course that teaches patients self management and how to match their insulin to their chosen food on a meal by meal basis.
The DAFNE Users Action Group was elected to work along side Health Care Professionals in shaping the future of this structured education programme for Type I diabetics in the UK and Ireland. The aim of the group is ‘to promote and support the continuing development of the DAFNE structured education programme and to represent the users so as to improve the quality of life for Type 1 diabetics and their families in the UK and Ireland.’
Emma Ward, a 30-year-old pharmacy assistant from Essex who was diagnosed when she was 16 says: ‘I remember feeling incredibly alone because I thought it was only me, I didn’t know anyone my age the same. I was forever being told what to do and when to do it. I got to the point of pure frustration because nothing seemed to be working and I had begun to think I would never understand.
"My moment came in summer 2006 when I took part in a programme called DAFNE, it seemed to be a defining moment in my struggle to understand my condition, and it changed my life in every way and more. I finally began to understand how to live my life with diabetes in it, I finally felt free to make my own healthcare decisions, to choose whatever food to eat and when to eat it instead of sticking to a set routine of getting up at certain times to do injections. DAFNE taught me to understand why and I have never looked back.’
While Peter Rogers, diagnosed at the age of ten, says: ‘The course, the first diabetes training I had received in over 40 years, teaches carbohydrate counting, how to match insulin dose to food intake and how to adjust for exercise and sickness. Now, at last, meals did not have to be eaten at specific times and insulin could be adjusted for days where more or less carbohydrate was eaten. In a job which requires regular global travel, the flexibility provided by DAFNE has been a huge benefit and my last measurement of long term control, was the best ever.’
For the newly married Annette Bell, it changed her life: ‘My diabetes nurse at the Hallamshire hospital recommended me for the course after my then new husband came with me to an appointment to see her. Alan and I had not been together long when I had severe hypoglycaemia during the night requiring the help of paramedics. It took them five hours to bring me round. This had happened three times when he decided to come with me and tell Lesley what had been happening.
"Since doing DAFNE my life has changed completely. I have not had any major hypos and I can eat what I like when I like, or not at all if I’m not hungry. For example, I went out to the theatre with some friends from church and on the way home they decided they’d like to go into an Indian restaurant for a curry. This was at 10.30pm. Previously I’d have had to refuse and go home. With the DAFNE system it meant I could join them in this spur of the moment meal and had a really good time with no adverse consequences.
DAFNE has given me freedom to live a normal life without restriction and I would recommend it to anyone with type 1 diabetes’.
More than 14,500 patients have gone through the DAFNE course at over seventy three Centres across the UK and Ireland and it has also been adopted by over 20 centres in Australia, one in New Zealand and six centres in the Irish Republic. But these numbers are tiny compared to the Type 1 diabetics in the UK and Ireland who could benefit.
As Peter Rogers says:’ The dilemma of achieving good blood glucose control without producing hypoglycaemia was overcome in 2000 with the introduction of DAFNE. This provided a structured five day education programme which was initially run at three centres and has since been rolled out across the UK.
Staff are trained by existing centres and are then audited to ensure consistent delivery across all centres. It has taken from 2002 for over 73 centres to be trained to deliver courses in over 113 localities.. The effect for me was that DAFNE was not mentioned at the clinic I attended. I heard of it from my sister, who also suffers from type 1 diabetes, who attended a clinic at one of the initial three centres. She came back from her course enthused about the virtues of the training and its positive effect on her control. Eventually the hospital I attend became trained in DAFNE and I attended the first course run in November 2007.’
And DUAG member Robert McKnight adds:’I was lucky enough to attend one of the two hospitals in Northern Ireland which has had the foresight to provide DAFNE as well as the resources needed to deliver the programme. With empowerment comes greater responsibility in how I manage my diabetes, and I still have to meet the ongoing challenges of living with Type 1 diabetes and how it affects me, my family, my work and all aspects of my life.’
The DUAG role is to become involved as users in new DAFNE research projects from the beginning providing the health care professionals with a ‘critical friend’,To raise awareness of the DAFNE programme amongst patients past, present and future in order to create demand for new courses, and also try and encourage DAFNE graduates to join the DAFNE User group and become more active.
Find out your nearest DAFNE course
All DAFNE graduates are invited to join the DAFNE User Group.