The DAFNE users action group are a selection of Type I diabetics who are keen to champion an education course that has changed their lives and given them the freedom to manage their diabetes, rather than let it manage them. DAFNE is 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.
Emma Ward, a 30-year-old pharmacy assistant from Essex who was diagnosed when she was 16. She 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 DAFNE. I finally began to understand how to live my life with diabetes in it. Now I feel free to make my own healthcare decisions, to choose whatever food to eat and what insulin to take, because DAFNE taught me to understand how it all works — I have never looked back.”
Meanwhile Peter Rogers, diagnosed at the age of ten, says, “The course, the first diabetes training I had received in more than 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. As I have a job that requires regular global travel, the flexibility provided by DAFNE has been a huge benefit to me. My last HbA1c was the best I’ve ever had.”
Emma and Peter are members of the DAFNE Users Action Group (DUAG) which has been elected to work alongside Health Care Professionals in shaping the future of this structured education programme for Type I diabetics in the UK and Ireland. The original 14 members now work with health care professionals to shaping research projects and contribute to the strategic development of DAFNE. They also campaign to increase awareness of DAFNE and lobby for sustainable funding to increase the number of centres that offer the courses.
All the members of DUAG are Type 1 diabetics who have been through the course and for them it is something of a personal crusade. For the newly married Annette Bell, it changed her life. She recalls, “My diabetes nurse recommended the course to me as I’d been having severe hypos in the night requiring the help of paramedics. 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. 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. 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.
DAFNE is a high quality skills based structured education programme in intensive insulin therapy and self management where people with Type 1 diabetes are taught to match their insulin dose to their chosen food intake on a meal by meal basis. In all, DAFNE provides 35 hours of structured group education and is delivered by specially trained diabetes specialist nurses and dieticians to groups of between six and eight over a consecutive five day period on an outpatient basis. DAFNE is evidence-based, evaluated, professionally delivered, quality assured peer reviewed and audited education package for Type 1 diabetics, meeting the four criteria required to fulfil the NICE requirements.
Based in Northern Ireland, 55-year-old Robert McKnight was diagnosed with Type 1 diabetes in 1991. Over the subsequent 20 years, there were several stepping stones he crossed in managing his diabetes. Around 4 years ago, at the diabetic clinic, the specialist diabetic nurse explained the benefits of DAFNE. He says, “I enrolled on the next available course and it gave me a clear understanding of how I could better manage my diabetes control. I am 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.”
DAFNE does not suit everybody, but it might be worth further investigation if you are on insulin. Says Peter Rogers, “The additional blood tests and injections can be seen negatively. However, for anyone who leads a varied life and needs flexibility, or anyone who needs to improve their control, I cannot recommend the course enough. It has changed my life. I can now control my diabetes rather than having it control my life.”
Desmond, Bertie, Sadie, Delia and others… For any of these courses you will need to talk to your healthcare provider and see if they can get you on a course in your area.
All DAFNE graduates are invited to join the DAFNE User Group. Find out more at www.dafneonline.co.uk or www.dafne.uk.com
DAFNE, Dose Adjustment for Normal Eating: http://www.DAFNE.uk.com/293.html
DESMOND, Diabetes Education and Self-Management for Ongoing and Newly Diagnosed: http://www.desmond-project.org.uk/locationmap.html
BERTIE, Beta cell Education Resources for Training in Insulin and Eating): There is a free online learning facility based on the part of the BERTIE programme which covers carbohydrate counting and insulin dose adjustment at www.bdec-e-learning.com
Detailed NICE guidance can be found at: www.nice.org.uk/Docref.asp?d=68383