"Diabetes set off course" Balance letter

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Simon Heller DAFNE HCP
Sheffield Teaching Hospitals
46 posts

We on the DAFNE executive wondered whether anyone had read the March/April Balance letters page which carried this critical letter of someone who had a very negative view of the DAFNE course. If someone felt able to submit a contrary view this might be helpful in creating 'balance' and helping us to try and ensure that DAFNE or another structured education courses are more available.
Simon

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

I thought it was odd that they would print that. Everyone is entitled to their view, but I don't think it is constructive to print a letter criticising an education course.

If this man has problems with hypos he should speak to his diabetic care team. In fact, I had loads of hypos prior to doing DAFNE and afterwards they are vastly reduced. If he is having hypos and yet his HBA1 is rising, he must be having high sugars too and misjudging something, I don't know if it is his insulin or food or what. It sounds like this man was using a rough reckoning system and ignoring his diabetes and DAFNE may have brought home some truths to him about the damage he could be doing, and the amount of work he needs to do to prevent it. His main criticism is that he 'hates mucking around with his food' - but food is integral to diabetes management and however much we might hate it, we would probably hate getting complications more. If his mealtime companions are so rude that they won't wait for everyone around the table to be ready before eating, that is not a fault of DAFNE. He says prior to DAFNE his blood sugars were not above 13 - but that is quite a bit higher than the DUK guidelines (http://www.diabetes.org.uk/Guide-to-diabetes/Treatment__your_health/Monitoring/Blood_Glucose/Blood-glucose-target-ranges/). I can't find any solid criticism of what he thinks is wrong with DAFNE exactly - is it the material which is taught? The methods? He says he is less happy after DAFNE. But that is to be expected to some extent - a whole 5 days thinking only of your diabetes is very intense. It brings up some deep-rooted emotions. I myself was in floods of tears at one point because I had been so scared for so long and had been denying my fears, or my diabetes, existed, and suddenly both were confronting me. It is an intense time and can be difficult for people to deal with.

marke Site Administrator
South East Kent PCT
630 posts

I would encourage everyone who has joined this site to email diabetes UK with a positive letter regarding DAFNE. The address is
balance@diabetes.org.uk. For every approach to Diabetes management there will be winners and losers, this is the only loser I
have come across and I have to say I find Diabetes UK approach to this disturbing. I'm sure they will say they can only print what
they say, to lets give them something to print !

I would suggest though that no one actually criticises this persons views as they are quite entitled to them. Better to let everyone
at Diabetes UK know how good the course is. I have criticised Diabetes UK in the past for their DAFNE coverage but not really got
a good answer from them. So lets make them aware that there ARE people who found it a life changing experience.

Diana 7 posts

Have you approached Balance about doing a feature about this site?

marke Site Administrator
South East Kent PCT
630 posts

No, we haven't it might be worth considering I guess. I have sent an email letter about DAFNE to the address I gave above, saying how
good it was for me and referencing this site. As I say, it would be good if others could send positive messages themselves. The more
positive messages they get the more they will have to print hopefully. This will give help give DAFNE the credit and publicity it deserves.

we will find out how we get them to do an article on the site and let you know how it goes.

Simon Heller DAFNE HCP
Sheffield Teaching Hospitals
46 posts

I think an article on the website is an excellent idea, lets see if the Editor responds

marke Site Administrator
South East Kent PCT
630 posts

For those that don't get a copy of balance, the letter in question:

" I have recenctly endured a DAFNE ( Dose Adjustment for Nornal Eating) course and it has destroyed my confidence and outlook.

Prior to the course, I had reasonable control of my diabetes. I knew what to do and when. I had three or four mild hypos a month, rarely had blood glucose over 13mmol/l and my HbA1c was 7 per cent. Post DAFNE, I have diligently applied the rules but I endure up to two hypos a day and my last HbA1c had increased to 7.8 per cent.
I hate mucking around with my food. By the time I have messed around weighing the potatoe or staring at the nutritional labels, everyone else has grabbed their plate abd is tucking in. I, on the other hand, will still be there, trying to draw blood from a finger, jotting the result down in a grubby diary and then working out my next insulin dose.

Prior to DAFNE I was happy with my lot. I lived with a condition called Diabetes. I had to be aware of it and take necessary precautions.
Post DAFNE, I am confused, depressed and diabetes has taken control of my life. I wish I could sue the people who put me on the course! For the first time since I diagnosed in 1976, I find the future harder to face than the thought of dying. DAFNE, Depressed And Frightened Not Enlighted"

I think the end sum's it up, sue people ! That tells you all you need to now about this chap. Self pity is not a sharing experience ;-(

marke Site Administrator
South East Kent PCT
630 posts

Just got a response from Diabetes UK about the email I sent them about DAFNE, nice helpful and positive ! I would still encourage everyone
else to email them in praise of DAFNE !! The email they sent me is below.......

Dear Mark,

Thank you for your email of 27 February to Balance magazine, and for sharing with us your experiences of DAFNE. We're pleased to hear that you found the course to be enlightening and extremely useful for effective diabetes management, and we thank you directing us to the 'DAFNE online' website.

Like you, the vast majority of people who have been on a DAFNE course have nothing but praise and excellent reviews for it, and this is reflected in the many letters published in Balance over the years.

Diabetes UK advocates that all people with diabetes, whether recently diagnosed or with pre-existing diabetes, should receive the structured education and support they need to enable them to manage their own diabetes. We realise that not everyone may feel the need to attend a DAFNE course, but we would recommend that individuals who find a DAFNE course to be confusing and unhelpful to discuss the reasons behind this with their healthcare team, so that they can receive further support if and where necessary.

Individual letters printed in Balance often open up a debate, and we have received many letters praising DAFNE, a selection of which will be printed in the next issue. I have now passed your email to the editors, and it will be kept on file for possible publication.

Thank you again for taking the time to contact us,

Kind regards,
Kate Flagg

Publications Coordinator
Diabetes UK
Tel: 020 7424 1190

In its landmark 75th year, Diabetes UK aims to raise over £7.5 million to fund research to improve the lives of people with diabetes.
Visit www.diabetes.org.uk/75years to find out more

Marie T-C DAFNE Graduate
University Hospitals Birmingham NHS Foundation Trust
2 posts

Just an idea....would it be possible to ask DAFNE education centres to promote course attendees to contact Diabetes UK with their views of DAFNE? Personally, I have nothing but praise for DAFNE. I am still undecided as to whether to persue using a pump (I fit the NICE criteria) but was told by my diabetes centre that if I do follow that path I would need to apply DAFNE to my day to day life anyway. I have only followed DAFNE since Oct '08 and have already improved my diabetes. I think there should be a regular feature in Balance about DAFNE and 'Insulin Pumps' - I really feel knowledge is power - it is then down to the individual if they decide to contact their diabetes care team for specific information.

Simon Site Administrator
Sheffield Teaching Hospitals
543 posts

It seems that we share the views of the vast majority of the balance-reading population. This months letters section, for the most part, highlights the strengths of the DAFNE course, and how much of a positive impact it has had on people's lives - both during and after the week itself.

Very encouraging!