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May 14, 2009
John 6 posts

Topic: General Discussion / Introductions

Hi
Just signed up to Online DAFNE after completing an evening refresher course at Northumbria NHS just last night. It was good to catch up on some mistakes I was making and which healthcare folk had advised wrongly on - or the advice has changed. I think the online diary and course handbook are magic. My original course was a full week at the Wansbeck General Hospital in Northumberland and I'd say i felt very empowered afterwards. It was over 4 years ago so since things have moved on and I've got rusty the evening refresher was a real bonus.

Now I can see my out of target BG in bright red in the online diary I'm sure I'll try harder and last night's refresher will help me understand better how to fix it.
Thanks to the online team for setting it up
John
14 May 2009
 
May 14, 2009
Jenny 27 posts

Topic: General Discussion / "Diabetes set off course" Balance letter

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.
 
May 13, 2009
Caroline M 2 posts

Topic: General Discussion / Dafne Course in Ireland?

Thanks a mill for your response. Would you have a contact in St. Lukes Kilkenny? That would be the nearest location and might be worth contacting them.
 
May 13, 2009
digth 19 posts

Topic: General Discussion / Dafne Course in Ireland?

Hi

DAFNE is delivered in the following services in Southern Ireland.

St Columcille’s, Loughlinstown, Dublin
St Vincent’s Dublin
University College Hospital, Galway
Beaumont Hospital, Dublin
St Luke’s Kilkenny
Midland Regional Hospital, Mullingar, Co. Westmeath

Unfortunatley nothing in Co Cork as yet.
 
May 12, 2009
Caroline M 2 posts

Topic: General Discussion / Dafne Course in Ireland?

Hi, I found this site mentioned in Balance Magazine and decided to look it up and its just what I have been looking for. I live in Southern Ireland (Co. Cork), and wondered it there are any DAFNE courses run in Ireland? I would be very keen to attend one and learn more.
 
May 10, 2009
Nicole 3 posts

Topic: General Discussion / Does Dafne work?

|Thanks to all the responses to my original question namely Does Dafne Work? I doubt I will have the chance to attend a proper DAFNE course in the short to medium term and in some ways I wish I had the intensive version that you have benefited from. I did wonder why my course could not provide any follow up material online and now I understand why! I like the CHO counter plus BG diary and will keep an eye on the forums for interesting topics.
IF anyone is able to refer me to other publications online or on paper to supplement my knowledge (our course covered insulin dose/CHO ratio, sick days, dose adjustment, exercise and alcohol) then I would be grateful as I am wondering if I missed something!
We also briefly covered psychological aspects of managing a chronic disease and I wondered if anyone's read anything useful on that recently? g.g. strategies to counter the guilt caused by not being a perfect diabetic!
 
May 9, 2009
Simon Heller 46 posts

Topic: General Discussion / "Diabetes set off course" Balance letter

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
 
May 8, 2009
marke 681 posts

Topic: General Discussion / Meeting up after the course

Lizzie,
Thanks for the tip about GATTO, as simon said we have plans to have regional areas on the site in the future to help 'local' DAFNE graduates keep in touch. The problem with this at the moment is we have only 53 graduates registered on the site out of 288 users. In addition 37 of the 288 are HCP's. This probably means the message about the site has not got to graduates yet. Once we have more graduates, there is a potential membership of 5000+, regional areas of the site will make more sense. We just need to boost the graduate
membership !

Lastly I totally agree that meeting other diabetics was one of the great things about the course. Spending a week with 7 other people who were like me and had the same experiences was a brilliant. At the moment my DAFNE meet-ups involve the same people I did the course with, but as more people do the course it may be necessary for me to do the same as you. I'm not sure that your PCT is meeting DAFNE guidelines if they don't give you follow up meetings and you keep missing out on them.
 
May 8, 2009
Simon 578 posts

Topic: Site Development / Online BG Diaries

Update: The problem that Simon described above where the drop down choices are cancelled when an error is found is now fixed and working on the site.

Simon
 
May 8, 2009
marke 681 posts

Topic: General Discussion / "Diabetes set off course" Balance letter

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 !
 
May 8, 2009
Simon 578 posts

Topic: Site Development / Online BG Diaries

Also I forgot to add, Shift+Tab cycles backwards through the text boxes (right to left).
 
May 8, 2009
Simon 578 posts

Topic: General Discussion / Meeting up after the course

I agree - one of the most useful and rewarding parts of DAFNE for me was meeting up with other people who had Type 1, and gaining from their experiences too. It is a shame that this isn't sustained more/is quite hit and miss depenending on where you are in the country.

One of the things we were looking at for future work was adding 'regional' areas so you could see other site users from your DAFNE Centre or others close by, and arrange social events through the site. We've been stabilizing our current features, but will be soon looking to the future and new features. If there is enough demand for something like this, then it will get done.
 
May 8, 2009
Lizzie 87 posts

Topic: General Discussion / Meeting up after the course

I did my DAFNE course last year. It really changed my life. However after a year I am noticing that I am slipping a little. My hospital do have meetups every 6 months or so but they are of all the PCT's DAFNE courses merged together plus some other local course called 'GATTO' (http://www.londondiabetes.nhs.uk/content.aspx?pageid=100466 since Mark wanted to know about local courses), so places go very fast and I have missed getting one.

I wanted to say that meeting other diabetics was one of the most valuable things about DAFNE for me and now after a year without face to face meetings I am struggling and my knowledge is beginning to fade under other pressures.

As far as I can tell, it is up the the PCT whether they arrange meetups after the course, or maybe the course members if they get along as a group.

What experiences have others had with meeting up after the course? Do you think it is important or have you managed to stick to DAFNE without it?
 
May 8, 2009
Lizzie 87 posts

Topic: General Discussion / Does Dafne work?

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.
 
May 8, 2009
Paul S 1 post

Topic: General Discussion / "Diabetes set off course" Balance letter

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
 
May 8, 2009
Crispo 5 posts

Topic: Site Development / Online BG Diaries

Again love the work Simon!

Multiple entry area looks great!

Simon T- You should be able to get used to using TAB to select through the input boxes and when you hit the dropdown boxes hit "B" key to cycle the three available 'Before . . .' options or hit "O" to select 'other'.

This way you can really belt through the entry withonly using your keyboard (Which is such a time saver!)

Nice one Simons! have a belting weekend Smile

-Crispo
 
May 8, 2009
Simon 578 posts

Topic: Site Development / Online BG Diaries

Hi Simon,

Glad this update will make you want to use the diary now.

Regarding using the arrow keys to navigate the boxes - unfortunately I don't think we can implement this as it is functionality implemented by the web browsers. You can, however use the tab key (above Caps Lock) to cycle through the different boxes from left to right. Sorry I can't be of more use here. If anyone knows any different about the arrow key functionality then please let us know.

Regarding the cancellation of drop down choices - I will look into this, should be fairly easy to do. I'll let you know when its fixed.

Thanks,

Simon
 
May 8, 2009
Simon T 3 posts

Topic: Site Development / Online BG Diaries

Hi Simon,

Nice job, the multiple diary entry function is much better. My only comments would be, is there a way you can move from box to box with the arrow keys, rather than a mouse click? Also, if you make an error prompting an error message when you click submit, all the drop down choices are canceled (i.e. before dinner, before bed, etc.). This is pretty frustrating when you've entered 10 readings.

These are the only problems I encountered. I would personally use the online diary now whereas before I wouldn't.

Thanks
Simon
 
May 8, 2009
Simon 578 posts

Topic: Site Development / Online BG Diaries

Hi all,

I've had a first bash at the multiple diary entry entry function. If you go to your online diary there is a link to add multiple entries in the add entry section. This will allow you to add up to 10 at a time. Please note you can only store up to 8 entries per day so any you do try to save beyond 8 entries may not be saved properly.

I'd appreciate your feedback on this on how it can be improved.

Thanks,

Simon
 
May 7, 2009
marke 681 posts

Topic: General Discussion / Does Dafne work?

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.
 
May 7, 2009
Nicole 3 posts

Topic: General Discussion / Does Dafne work?

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.
 
May 7, 2009
digth 19 posts

Topic: General Discussion / Does Dafne work?

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.
 
May 7, 2009
digth 19 posts

Topic: General Discussion / DAFNE in peril at the Wirral

With regard to the response from the Complaints Manager at Wirral Teaching Hospitals, the key question is whether they provide evidence that the alternative course they are planning to offer is of the same high quality and with the evidence base to support its use (as per DAFNE) and can it meet the 5 criteria required to meet NICE standards for Structured Education? Or is it just a "satisfactory course" and if so what do they mean by satisfactory?
 
May 7, 2009
Dawn 2 posts

Topic: General Discussion / Does Dafne work?

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!
 
May 7, 2009
Crispo 5 posts

Topic: Site Development / Online BG Diaries

Again many thanks Simon,

Loving having the days in the Date column! Just generally love the online Diary.

Totally understand that the multiple entry request is a tricky one . . . 7 Entries as a starting point sounds "sound" to me.

Cheers,
Crispo