Does Dafne work?

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Nicole 3 posts

I live in Epsom and have done a local version of DAFNE. I have found this very useful because it has brought me in touch with other type 1 diabetics from whom I gain lots of moral support and inspiration. We meet up monthly and that is all well and good but the general feedback from the group seems to be that their actual HBA1c results are not particularly improved. I wondered what long term improvements others have noticed and whether there are any other ways of measuring it than the HBA1c? (I have also heard that because its a mean average of your blood sugars its possible to be badly controlled, with extreme highs and lows, but get a good result).
I am pro DAFNE because its given me the tools i need to fit diabetes into a normal life but I am aware that if I am to bring down my blood sugars I've got to be pretty careful about carbs and insulin and all the other variables. In other words it only works if you keep trying, testing and building on your self knowledge.
How do you keep yourself focussed and on track? What support do you get from HCPs and other diabetics? BTW in the interests of openess my HBA1c is 8.4 so I could do better!

marke Site Administrator
South East Kent PCT
675 posts

Hi,
When you say a 'local version' of DAFNE, what exactly do you mean ? Was it the official DAFNE course or some adaptation of it by the local PCT/hospital. Its is true that HBA1c shows the level of blood sugars over the last three months and in theory you could have a lot of highs and lows thst average out, but I suspect in reality if your control is that un-even you wouldn't get a good HBA1c. I don't believe that there is any other test that gives an indication of blood sugar control.
The idea of DAFNE is you DONT have to be so careful about carbs because you match your insulin too the carbs you eat. The only variables are how much background insulin and how much fast acting insulin to take, although I agree the best way is to keep testing and adjusting to get it right.
I think that your group is like mine, they are being too harsh on themselves and not focusing enough on the positives. Some in my group were concerned that their HBA1c had not imporved by much, however after a group discussion it was clear that prior to DAFNE they had seldom tested their blood sugar. Post DAFNE they were still regularly blood testing and that was a big improvement on before. So there was no miracle improvement BUT they had made some progress and we helped them to focus on this as a way of continuing to improve their HBA1c and stay on track.
There is no easy solution to stay on track. I would say the help of others is the best way, which is one of the reasons for this website existing to help DAFNE graduates communicate and support each other. So keep working at it and focus on the positives and changes you have already made. Hopefully this will help you keep on track.

Stew B DAFNE Graduate
Norfolk and Norwich University Hospital
125 posts

My HBA1c was pretty good before I did my DAFNE course in Norwich in Feb 2007, and it has remained at just below 7 pretty constantly since then. For me the huge benefit of DAFNE has been to get my (and my family's) food life back. I was diagnosed in 1999, when I was 46, and the change for me was pretty radical. I became obsessed with achieving a low HBA1c, and ran my life around my diabetes. I felt that I had lost control, and the impact spread to work and especially to my family. Maybe another sort of structured education might have helped, but for me DAFNE was a revelation - it has given back control and flexibility, to both me and my family. Clearly, achieivng good blood glucose control is important for physical health, but for me the huge improvement in emotional well-being has probably been the biggest direct impact of DAFNE.

Dawn 2 posts

I have also done a local version of DAFNE, and the principles were the same, using a ratio of carbohydrates to insulin. My own HBA1c hasn't improved very much, although my blood tests results seem generally better overall, so it was a bit of a surprise at my last clinic appointment that it was 8.4.
A specialist diabetes nurse who was involved with the training (now retired) believed that the ups and downs of highs and lows caused more problems than a raised HBA1. I do find that hormones play a huge part in upsetting blood sugars, especially before periods, and now during the menopause. I agree with the person (sorry, I'm new to the site!) who said that the medical staff usually appear to gloss over this issue, but after 50 years of diabetes, I feel it makes a significant difference to results.
Keep up the good work, everyone!

marke Site Administrator
South East Kent PCT
675 posts

Can I ask again from both Nicole and Dawn what they mean by a 'local' version of DAFNE ? The principles of DAFNE are NOT just a ratio of
carbohydrates to Insulin there is much more to it than that. This is why I'm slightly concerned by 'local' versions of DAFNE especially if you
both say it hasn't made much difference to your HBA1c. The 'official' DAFNE course lasts for 5 days and includes a lot of background information as well as training in getting both your background and quick acting insulins correct. Do local versions of DAFNE do this and did your course last this long ? I don't want to make this an ours is better than yours debate, but the point of the official DAFNE course is it is based on a
lot of research and study both in the UK and other countries. Its worrying if PCT's think they can 'adapt' it to their own local setups by
removing parts that might be important to the whole thing. This might not be the case, which is why I'm keen to know about the local versions.
I would also be concerned by statements like its highs and lows that cause more problems than raised HBA1c. As far as I am aware study has shown that complications are caused by HBA1c's being elavated in the long term, although I agree that a lot of highs and lows are potentially a problem. Part of DAFNE is aimed at helping you manage your BG's so that they don't go so high and are thus more even.

Please do let us know what your version of DAFNE entailed.

Dawn 2 posts

My 'local version' of the DAFNE course lasted two days, and we were given very detailed booklets explaining in detail everything that had been discussed, which included basal and bolus amounts of insulin requirements, absorption of different carbohydrate foods, timing of insulin, affects of alcohol, and plenty of other information. Food diaries were also used, and individual advice given, and also follow-up appointments with the nurse and dietician who were taking the training. I am fully aware that the principles of DAFNE are not just a ratio of carbohydrates to insulin, and neither was the course that I did. Diabetes is definitely a complicated subject, and I have found over the years that often blood sugars rise and fall for no obvious reason, which is probably the same for everyone with this condition. Good advice and regular blood sugar testing is the only way!

digth DAFNE Management
DAFNE Central
19 posts

As marke has alluded to in previous postings the DAFNE name only applies to the 5 consequetive day intensive insulin therapy programme delivered by diabetes specialsit dietitans and diabetes specialsit nurses that have themselves completed a 14 day training course on how to deliver DAFNE including a full assessment of their adult educator competancies and their ability to deliver the DAFNE curriculum. These DAFNE Eudcators then have to deliver at least 1 couse every 26 weeks, particpate in an on-going quality assurance programme and be externally audited every 3 years to ensure eductor syandards are being met.

Since all DAFNE Educaotrs are assessed, quality assured and centres externally audited the DAFNE course delivered in each of the 74 DAFNE centres is the same. The term "local versions" itself means that these are not DAFNE courses.

Nicole 3 posts

My local version was delivered in 5 non consecutive days bv 2 diabetic nurses and a dietician. I and the other participants were glad not to have to take a whole week of work/childcare but that aside I do not know if our version was inferior to the pukka DAFNE however I believe we covered everything necessary to achieve what we set out to at the start. So I think this debate is a distraction because the knowledge about CHOs, insulin, alcohol, dose adjustment is not complex so does it really matter if local PCTs have adapted the original principles some what provided more diabetics can get together, get an update on how to manage their condition and get some continued support form their peers. The last point that I would like to make is that I believe DAFNE is NOT suitable for all type 1s. For example on our course there were at least a couple of people who could not cope with making changes; one was elderly and did not get the maths of dose adjustment and calculating the ratio of insulin to CHO intake and the other was inclined to run high blood sugars either due to fear of hypos or just out of habit.

marke Site Administrator
South East Kent PCT
675 posts

Nicole,
As I said in my earlier post, I don't want to start an ours is better than yours debate and I don't want to upset you or Dawn. However there is a good reason the 'official' DAFNE course is 5 consequetive days and not two or 5 non-consequetive days. The 'official' course involves a lot of discussion of BG results taken every day over the week, the aim being to teach the participants what effect the background and fast acting insulin is having on them and how best to adjust to cope with it and carb intake. Its not possible to do this over 2 days or 5 non-consequetive days. I'm not suggesting your course was inferior, but yes it does matter if PCTs adapt the original. There are government guidelines regarding diabetes training and the DAFNE Course meets all these criteria, a PCT version 'adapted' may not. I totally agree any diabetes training is better than NOT getting any, but it would be good if everyone got the same course. That way we know everyone is getting the right training to adjust their insulin from day to day. There are other important things like 'sick-day' rules that are crucial if you are ill that might be 'dropped' from a shortened or adapted course. On the official course they also make radical changes to your insulin regime, this can only be safely done if you are seeing them everyday so the effects can be monitored and managed.

Another point is this website is 'sponsored' by the 'official' DAFNE people, we cannot give access to parts of the site because the information they contain is specific to their version of DAFNE. Understandably they don't want people who have not done the course to access this information, because if they follow it and have problems they could take legal action against the DAFNE people. This is another reason i am keen to know about 'local' versions.

Its very useful that you have provided this information, thank you very much. It provides valuable insights into what is happening in PCT's round the country and we are still keen you register with this website and take part in discussions. This site is for all diabetics and hopefully will support all diabetics, we just as I said above, have to limit access to some things to 'official' DAFNE graduates by necessity. This doesn't mean we don't value your input and views.

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

I think it is important to have the course over 5 consecutive days. It really helped me focus on my diabetes without other distractions getting in the way. That is really a one-time occurrence. To take 1 week leave is not so hard, and I was informed of the dates way in advance. People would take 1 week for a holiday, and your diabetes is far more important. How did you manage with non-consecutive days? Did you do 1 day at a time with changed insulin and then go back to your old regime when not doing the course and then back on the course regime and changed dosage and food again? Or did you change for the course and pursue the changed regime on non-course days, unsupervised? I valued the supervision of my food and insulin over the course - nobody had ever told me anything about changing either before, in 15 years, other than 'eat less', so I was very wary of doing it and would not have done so on my own.

I agree, DAFNE is not suitable for all type 1s. I am insulin resistant, for example, and at times felt alone and isolated because I was injecting so much insulin compared to the other people on the course. But no course can be individually tailored to fit everyone and I think the people behind DAFNE have done a great job helping as many as they can. The most important thing for me is that DAFNE gives you confidence so that if the recommended way does not suit you, you can try altering it and find a way that does.

As for the original question, there are other ways that DAFNE can work other than lowering HBA1C. I used to be very scared of high sugars and injected far too much insulin so i was hypo a lot. After DAFNE this tendency has not completely gone but has definitely reduced a lot. My blood sugars are more stable (HBA1C does not always reflect this, lots of extreme highs and lows can average out at an OK level sometimes) and my moods are a lot better too. I am more confident about managing my own condition. I am more informed and seek out information from other sources. I no longer ignore my diabetes.