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Meet DAFNE and her friends Desmond, Bertie, Sadie, Delia and others…

Sadie imageYou may not have heard of DAFNE (Dose Adjustment for Normal Eating) or the associated educational programmes for diabetes such as DESMOND (Diabetes Education and Self-Management for Ongoing and Newly Diagnosed) and BERTIE (Beta cell Education Resources for Training in Insulin and Eating).

The list goes on, with others in the ‘gang’ including BRUCIE in Ayr, DAFYDD in Abergavenney, ALFFI in Carshalton, DELIA in Dudley and DAISY in South Tyneside. Each is a variant of the original DAFNE course that is based on a programme of education first undertaken in Germany for enhanced T1 diabetes control.

And it’s not just a fad. NICE has recommended that structured education be offered to all people with diabetes at the time of diagnosis and then, as required, based on a formal, regular assessment of need. Meanwhile the Diabetes National Service Framework (NSF) highlights the crucial part that patient education has to play in enabling people with diabetes to effectively take control of their condition, by including referral for structured education as a dimension of systematic care.

Put simply, to live a long happy live with diabetes you need to know how…. Living with diabetes is a marathon, not a sprint, it affects all your eating choices and the more you know about that you are eating and how it can affect your blood sugar control then the better equipped you are to make a good job of it.

Back to Basics
We spoke to Dr Simon Heller, Professor Of Clinical Diabetes at Sheffield Teaching Hospitals Foundation Trust who looks back on the inception of DAFNE in the UK. “It was 1996 when Sue Roberts and I attended a meeting in Helsinki and ended up discussing a talk we had heard by Michael Berger a diabetes specialist from Dusseldorf.  Sue and I already knew of their claims that Germany were taking better care of type 1 diabetes than those of us in the rest of Europe, and especially Britain.  A multi-disciplinary team led by Sue, from our two units and that of Professor Stephanie Amiel’s group at Kings College Hospital went to Dusseldorf and met with Berger’s team, all of which were very generous with their time.  We met various staff, looked at their courses and spoke to patients who confirmed that they loved the course — they felt that they were being taught skills that could ‘set them free’ through information.  We all agreed that the course should be looked at within the context of the UK healthcare system.”

Professor Simon Heller

Heller continues, “In order to start getting the necessary funding we designed a research study and applied to Diabetes UK for funding. We have also received generous funding from Novo Nordisk, which has been extremely supportive. There were nay-sayers then, as there continues to be, but we think that the results speak for themselves. The point of the study was to establish whether or not we can change the outcome of HbA1c results as well as the quality of life of the patients.  As it happens, what we have been able to prove time and time again is the improved quality of life, although it may not impact an individual’s HbA1c level. In 2002 we printed our results in the British Medical Journal.  We had done the study across three sites — Kings College Hospital London, North Tyneside Hospital and Sheffield Teaching Hospital.  It was then, and remains, a very exciting project.  Although improvements in HbA1c levels may have been modest, the quality of life showed massive improvements; patients just loved it.”

Skills for life
Skills for diabetes self-management is recognised across the healthcare industry, but what is actually available are various alternative courses, which is why there are so many other names involved – Bertie, Sadie, Delia and so on. The fact is that many centres can’t fund the appropriate training – to do it right DAFNE is a significant investment in terms of staff time.  Each DAFNE course is usually two teachers with 6 to 8 participants, and the full course is five full days, so it is quite demanding in terms of staff time. Heller explains the validity of the commitment saying, “The point is that we are equipping people with tools that will last them a lifetime, improving their quality of life, and hopefully their length of life as well. So whilst it is intensive it is worth every moment, and every penny. It is very important to have face-to-face contact between the educator and the patients themselves.”

The DAFNE courses are peer-reviewed in order to check the skills set of the educators and the course delivery. This ensures there is a consistency on what information is being taught and how it is being taught. The original results from the first courses were published in 2002 in the British Medical Journal and many patients since have said that it has changed their lives.

Says Heller, “It is widely understood that people with diabetes need to control their blood sugar levels and often they are told they need to get better control by their consultants. When they come back into hospitals for a subsequent appointment they are then told off for not achieving better control and yet they are given no specific skills to help them to achieve this. DAFNE addresses this by equipping people with Type 1 diabetes with new skills, or even brush up on forgotten ones. Thousands of patients have gone through DAFNE down but we are not resting on our laurels. We now have the courses being taught in about 70 centres, which is somewhere between a quarter and a third of all hospitals with dedicated clinics for diabetes care, but we would like to think that anyone who wanted to improve their skill set would be able to access a DAFNE course in their area.”

Change management
As with any new skill set, it can take time to understand, adapt to and made part of your daily life. The DAFNE course is not preserved unchanged and can be improved upon to deliver around specific needs. Says Heller, “The tools currently offered to self manage diabetes and replace the failing pancreas gland are very limited, just taking more insulin to bring blood glucose down will end up in hypos.  To keep going with DAFNE guidelines every day is really very hard and some healthcare professionals don’t stay the course either, moving away from core DAFNE principles and cherry-picking parts of the course they prefer or find easier to teach. More support is still required for people with diabetes to live within the DAFNE criteria, and it needs to go on beyond the course itself.  Patients if they are in a DAFNE area are lucky and that’s great, but if you are in a local area and it is not available then that is a tragedy. Nor is it all about the technology, it is about the education behind using it. I would defend the right for the choice to a pump if it is the right thing for your care and control, likewise with appropriate blood glucose monitoring tools. If you can self-manage well on multiple daily injections then there might be no need for a pump. It really is about education, education, education.”

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.

RESOURCES
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

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  • (Mrs) Anne PASCO's Comment (Mrs) Anne PASCO Posted On: Apr 9th, 2015 at 15:59

    I was first diagnosed diabetic when pregnant in 1972, was free of it after my son was born until five months into my second pregnancy. After my daughter was born in 1974 I was again symptom-free until 1976, when I was found to be suffering from type 2 diabetes and treated with tablets. In 1979 my GP decided insulin was necessary, two injections per day. This changed again, I think in 1985, when I was put on to four daily injections – three Actrapid (now Novorapid) before meals and one long-acting insulin at night. I have continued on this regime ever since, testing my blood sugar frequently and adjusting insulin according to what I was expecting to eat, with a constant long-acting (currently 19 units of Levemir) insulin at night. This regime seems to have suited me well, and I am very used to it, though my blood sugars do vary quite a lot.

    It seems to me this is virtually the DAFNE programme, though I have not taken an official course and just rely on experience, regular and frequent blood tests, and of course limited consumption of high-carbohydrate food, but I do enjoy my food and allow myself modest ‘treats’ from time to time – and adjust my insulin doses accordingly; and I am happy to say, thankfully, I have so far avoided serious diabetes problems after forty-odd years’ personal acquaintance with the disease.

    However, unfortunately my son has recently been diagnosed with Type 1. My mother also was diabetic, on insulin, from 1938 until her death from a stroke in 1968 – I have no idea whether she had type 1 or type 2 – I don’t think I knew about the distinction in those days. My daughter now has two children, aged 8 and 4, and I am glad to say she did NOT suffer gestational diabetes, like her mother and (possibly) grand-mother. But I was shocked when my son contracted the disease, diag-nosed after he lost a lot of weight and consulted his GP about that.

    I have never been sure whether I have type 1 or type 2 – or if it matters! But I live in an area (Hastings, East Sussex) where the hospital does not treat according to the DAFNE principles, though my son has just been advised that a SADIE course might be appropriate for him. Is that the same as DAFNE? Or the same thing with a different name or focus? I would be interested to know!

    I seem to have ‘gone on a bit’ about my experience of diabetes, but perhaps someone may be interested, and I should be interested to hear about any similar diabetic histories.

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