Recent Posts - DAFNE Online

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 686 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 686 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

May 6, 2009

Simon 578 posts

Topic: General Discussion / Do you have access to the Online Handbook?

Hello site members,

Take a look to the right of your screen. If you are logged in you should see an orange box containing, amongst other things, 'BG Diary'. If you are a DAFNE Graduate (and the site recognizes you as one) then you should also see a link to the 'DAFNE Course Handbook'. If you can see this and are a DAFNE Graduate then... Fantastic - your registration on the site is OK.

If you are a Graduate and cannot see the link to the DAFNE Course Handbook, then the site doesn't know that you are a DAFNE Graduate and therefore won't give you access to the handbook. This is because material in the handbook is potentially dangerous if used by someone who isn't DAFNE trained. To get access do the following:

Get in touch with your DAFNE Educators. They have been prompted to register on this site as HCPs (HealthCare Professionals) via an email straight from DAFNE Central. This gives them the ability to generate a code for their particular DAFNE Centre, which is then to be distributed to their Graduates. Please note this code is unique to DAFNE Online and is no way related to the centre codes from DAFNE Central.

Once you have got the code from your educators, click the 'Settings' link at the top of the site. There, about halfway down, you will see a DAFNE Centres section. First of all, select your DAFNE Centre from the drop-down box; these are sorted into regions then alphabetically for your convenience. Then, enter the code given to you by your Educator into the 'Centre Code' box. Finally, click 'Update Centre' and, all being well, you should now see a link to the DAFNE Course Handbook on the right hand side of the site.

You may receive the centre code in the format of an A4 invitation flyer, if this is the case then you don't need to follow the instructions to create a new account if you already have one - just use the code in the flyer in the instructions above. It will work.

If you have any questions or comments on this process, then post them here.

Thanks,

Simon

May 6, 2009

Simon 578 posts

Topic: Site Development / Online BG Diaries

Guys,

Point 2 - all done!

Regarding the inputting of mutiple diary entries - there is a balance required here as you have to remember that all of the data you input on the page is sent to our DAFNE Online web servers... The more entries, the more data; the more data the slower it will be to save your entries (and this may result in your web browser timing out and not saving them at all). I'd suggest 7 ( a days worth) as a starting point, and I'll work towards that, if there are no objections?

Simon

May 6, 2009

Carl 5 posts

Topic: Site Development / Online BG Diaries

Crispo,

Point 2. I was thinking exactly the same thing myself. +1 from me.

May 6, 2009

Simon T 3 posts

Topic: Site Development / Online BG Diaries

Hi Simon,

I'm glad you think this function is possible. With regards number of entries.. this is tricky. I personally would be happy with entering a day at a time (say 4-6 readings a day), but I guess it makes sense to correlate with the DAFNE diaries I assume everyone is all too familiar with. In this case would 7 days of 6 readings be feasible?

Anyone else?

Simon

May 6, 2009

Simon 578 posts

Topic: Site Development / Online BG Diaries

Hi Simon/Paul,

Some good comments there - I agree with them too. Regarding the entry of multiple entries I propose having a separate page for this - as having 28 rows will take up a lot of space. It will take a bit of time to do as the way the site is set up at the moment it geared towards accepting one set of data for an entry at a time. It can be done though. Point of discussion - what is a good number of entries to enter at a time - 28?

Re adding the day to the Date column - this can easily be done, expect it to appear soon...

Thanks,

Simon

May 6, 2009

Crispo 5 posts

Topic: Site Development / Online BG Diaries

Hi Simon / DAFNE Tech dudes and dudets,

I have a couple of contributions to make:

1. I agree with Simon's point above about multiple entry functionality. Trying to think how that would be best presented is tricky, but I agree I love keeping my diary online but just don't have the time to update every day. If a solution for this could be implemented then I would be one happy DAFNE grad!

...AND...

2. Would it be possible for the Diary section to be modified so that the Date column also details the relevant DAY, maybe above the current DD/MM Date i.e. Mon 04/05, Tue 05/05 etc. The justification being that when looking back over previous results it would be handy to be able to see at what phase of the week the levels were recorded without having to consult a calendar/diary.

Please let m eknow what you think and whether the date thing is possible. KEEP UP THE MINT WORK!

Thanks and regards,
Paul

May 6, 2009

Simon T 3 posts

Topic: Site Development / Online BG Diaries

Hi Simon,

The online diary is a nice idea and has great potential for viewing graphically what might otherwise be an illegible scrawl on a page. I started using the online version but soon got tired of having to enter each reading manually. I guess the rationale is that you make an entry as soon as you take a BG reading/CP, etc. It would be great to have a way of entering a whole week's entries at once, i.e. having all the boxes in front of you and just entering readings in each one - as you would an excel spreadsheet. This would prevent the need to make individual entries (some 28 in a good week) unless you wanted to. Not sure how easy this is to implement but your reactive responses so far have been impressive.

Cheers,
Simon

May 5, 2009

marke 686 posts

Topic: General Discussion / Does Dafne work?

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.