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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 dont
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 Andys
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 Andys 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!
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!
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.
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:
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Eat what you want when you want how? |
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Improve control of the condition |
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Work out a structured framework around which
we can lead a near normal or flexible lifestyle |
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Improve our understanding of the condition and
eliminate the guess work |
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Independently manage our lives in circumstances
such as illness |
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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!
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 insulins taken or other observation
relating to diet. Each day covers mandatory subjects 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 days 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.
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.
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The course is completely relevant and recognises
many aspects of life as a diabetic. |
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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. |
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The groups 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. |
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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!). |
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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. |
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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?). |
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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. |
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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. |
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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. |
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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 Ive
taken control of a condition that had previously controlled
me. |
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.
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 DAFNEs 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 DAFNEs progressive approach could not soon become
available to the majority.
M Smith
DAFNE Graduate October 2003
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