"Diabetes set off course" Balance letter

19 posts, 11 contributors

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Paul S DAFNE Graduate
Darent Valley Hospital, Dartford
1 post

Ok folks, hands up, I am the person who wrote to Balance with some very negative views of DAFNE. I wrote the letter at a time when I was particullarly low. As indicated in the letter, I have been insulin controlled since 1979. Over the years I have had continuous support from the Diabetes team attached to the Dartford hospitals.
Last year the continuity collapsed. Firstly the Diabetes specialist nurse with who I had tremendous rappor retired, then just as I completed the DAFNE course, the replacement nurse resigned to take up another post.

So the support I was used to being there, even if I didnt use, was suddenly unavailable.

At the end of the DAFNE course, I stuck to the new set of rules. I weighed EVERYTHING. I managed my Bosal insulin (Lanctus) down from 24 units per day to 15. I studied my blood sugar and tried desperatly to hit targets, but hours after my meal my blood sugar would be very high, and later still, very low. I was seriously depressed.

Thats when I wrote the letter.

However, despite the tone of the letter, I have never been a quitter, so I turned up at the DAFNE review meeting this week. There I met the new Diabetes Specialist nurse, Adrian. Throughout the meeting (3 hours) I recorded by blood glucose. At 09:00, 15.8. At 11:40, 6.2 and falling fast. Adrian looked at the result and trends and referred to my medical history. I have to take Thyroxine to cover the fact that I produce antibodies against my own Thyroxine, and I have 100% hair loss due to hormone imbalance, and I produce antibodies against my own hair folicles.
This was the Eurika! moment. Adrian had seen this problem once before. I am producing anti-bodies against insulin! Thus the onset of the QA insulin is delayed. Sometimes by a few minutes, sometimes by hours.
Think about it.
I have been trying to calculate my insulin requirements against a constantly moving base. no wonder I have been suffering such extreme peaks and troughs!
Prior to DAFNE, my Bosal dose was far too high, but was at least smoothing out the peaks.

Adrian is now looking to see if he can change my Insulins to ones more in tune with my fractous body. Other than that, it looks like I will be paying a few visits to Kings.

PS, No thank you to an external pump. I have a nerve band around my stomach wich makes the who aea suspectable to very painful injections. My stomach muscles clamp down on the needle. Not nice. Imagine what would happen with the pump needle constantly emmbedded.

Finally, I will be writing a second letter to Balance later today, as a follow-up to my first letter. This one will be a lot more positive.

By the way, what can we do about the gentleman who feels he has to test his blood glucose every 5 minutes whilst on a tread mill? now that is excessive!

Regards to all.
Paul Simons

marke Site Administrator
South East Kent PCT
630 posts

Paul,
Thank you for being brave enough to own up in public ! That deserves a lot of credit. As you would expect the views on this site are very pro DAFNE and this reflected our campaign to get Diabetes UK to publicise it. That said we and they are NOT above criticism and if it didn't work for you, you have every right to say so. That said what you said in your balance letter and your post above makes it sound like your DAFNE course was a lot stricter and more intense than mine. Although while on the course we weighed food, this was just as an aid to estimating and we were not expected to weigh everything at home. We were also not expected to hit BG targets religously. For a lot of people the course was asking them to change the habits of years and so the approach was a slowly but surely approach to everything rather than an expectation they would become perfect diabetics overnight. Thankfully it sounds like you have found a new Specialist who has helped you understand why your problems are occuring and is helping you to tackle them.
I think one of the key things DAFNE teaches us is we are ALL different and a one size fits all approach to Diabetes care just doesn't work.
Putting the tools into our hands allows us the individual to manage our own care in the right way. Hopefully now you have the missing link in your Diabetes management you can push on and get the full benefit of DAFNE. But first put those scales back in the cupboard and
relax a little. Like you said no one needs to test their blood every 5 minutes and you don't need to weigh every meal ;-)

Finally, I'm glad you found us and please continue to post your views they are welcome !

Simon Heller DAFNE HCP
Sheffield Teaching Hospitals
46 posts

Paul's frustration in struggling to implement DAFNE in the first few months after the course is I think quite common. None of the 'rules' seem to work, some people have a lot more mild hypos and it takes a lot of effort and commitment to keep this going on your own after the support of others during the week. I have seen people get really low and depressed and I sometimes regret having persuaded them to do the course. What is encouraging is that most come through this and realise that the DAFNE course gives them extra knowledge and skills to work out an approach that works for them. By 9 months post course most people are really positive although quite a few stop doing quite so many blood tests. Others have said openly that this is "Diabetes in your face" and in the end prefer to go back to 2 injections of pre-mixed insulin a day which is fine as well. I guess the problem is that until you have been on the course and tried DAFNE you can't really know what it is all about. Simon H

Jenny DAFNE Graduate
University Hospitals, Leicester
27 posts

Wow! Thanks Paul. I have just logged on to agree with your letter in balance about how DAFNE is not all it is cracked up to be. I too have an under-active Thyroid due to auto-immune anti bodies. I also find that my QA insulin takes up to 3 hours to have any affect. It stays high for ages and then suddenly drops. It gets me really depressed. I used to feel in control of my diabetes but now it is definitely in control of me. When I have been to my check ups the Doctors are not that bothered about my daily readings because my HbA1c is good (although I think it is going up). I weigh my food at most meals simply because i need to know if i have miscalculated it when i get the highs and lows later. I did the course 2 years ago and am still waiting to feel positive about it.

I am going to e-mail my diabetes nurse and copy your post in.

Thank you.

marke Site Administrator
South East Kent PCT
630 posts

Jenny,
There was another topic discussing the 'suitability' of Type 2's and insulin resistant diabetics for DAFNE and to degree your and
Paul's experience seem to back it up. I think we all agree that every diabetic is different and no solution fits all, however it seems that
people that are insulin resistant find it a lot harder to follow DAFNE 'rules'. Recently I have had to take steriods and they have been
making me insulin resistant and screwed up my Blood sugars so I can empathise with your experiences.
I don't think this makes DAFNE not a good course, I think it underlines that HCP's need to think very carefully about including people
who are insulin resistant. I'm not suggesting they are excluded, merely that both sides understand the additional complications for
following the course for people who are insulin resistant.
Its still intereesting to hear your experiences and like I said to Paul, if you don't feel happy about DAFNE you have just as much right to express this view as we do to praise it. The course can only improve if all points of view are taken into account.

Lizzie DAFNE Graduate
Guy's and St Thomas' Hospital
87 posts

I am insulin resistant and for me DAFNE was a lifeline. Yes it was hard and I did feel isolated. But in fifteen years, nobody had ever told me how to adjust my own insulin, treat a hypo or deal with illness. I had never met another diabetic. I don't even know if my doctors were aware of my insulin resistance before I found out my ratio on DAFNE - they certainly never mentioned it to me.

herbert52 DAFNE Graduate
Sandwell PCT
1 post

bert, dafne graduate march 2009. Sandwell pct. I am about to email balance magazine. Dafne has really helped me to understand how much insulin per meal I should have. To an excellent success rate. I have read balance since diagnosis in 1992. Helpful, but not as much as dafne. I agree that following dafne is more time consuming than guesswork. However, I think I am worth it. Due to dafne, my quality of life and life expectancy should improve over the next few months/years. Note, I have metformin tablets to counteract insulin resistance, prescribed by my diabetes specialist.

Magpie DAFNE Graduate
Glasgow
4 posts

Paul, that was brave of you to post your original message and I agree with most of what you say.
Like yourself I was trained to keep to a steady amount of CHOs a day to keep the metabolism steady.
The name of the course irritates me, Dose Adjustment for Normal Eating, as I think that everyone
particularly diabetics should be encouraged to eat the best possible diet they can, not to be
digging into handfuls of sweets and drinking diet coke whilst undergoing the course.
And all that testing would make your blood sugars rise.
We are all waiting for the day when there is no such thing as having to take
injections and do blood sugar testing, and being diapathetic. That day is drawing closer.
In my opinion, a normal diet is not a good idea for most people. What about the days
when you are feeling "wabbit"? What is easy and nutritious to eat then?
How about Dose Adjustment for Natural Eating?

Type1 -89 1 post

I have not done a Dafne course but a similar Education programme called Aspire which is one day a week and is about carb counting, diabetes management and exercise run by Chesterfield Royal hospital. A full 5 days would not work for me as I run my own business and have a young son. This method has allowed us to see patterns over a month and get advice from the dietitician and diabetic nurses there on changes to make. There has been limited changes to my usual weekly regime. I have found this an excellent course for this reason as adjustments can be made on a gradual basis. The same information is covered but it works as a better time frame. I think I would not enjoy a full intensive week of a course as living with diabetes is extremely frustrating when there are so many different variables controlling blood sugars.