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May 8, 2009
marke 657 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 7, 2009
marke 657 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 5, 2009
marke 657 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.
 
May 3, 2009
marke 657 posts

Topic: General Discussion / Does Dafne work?

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.
 
Apr 30, 2009
marke 657 posts

Topic: General Discussion / DAFNE in peril at the Wirral

You are right at least the PCT has been made aware of this issue. I'm told the trust wants to issue a statement to put on this website, we await it with anticipation. I am interested to know what 'whistle' is, sadly google can't help which I suspect tells me all I need to know.
I'm sure we all want to see Diabetes Structured education available, however without knowing the details of whistle its hard to say how it compares with DAFNE.
If anyone gets a letter of response from the Trust please let us know so we can co-ordinate a response.
 
Apr 30, 2009
marke 657 posts

Topic: Questions ? / How to attend a DAFNE Clinic after moving house

hey, good news!! let us know how it goes. Hopefully you can continue to get DAFNE support from them and this site. I used to
live in that part of the country and still miss it....
 
Apr 23, 2009
marke 657 posts

Topic: Questions ? / How to attend a DAFNE Clinic after moving house

moving diabetes care to primary care pah ! Whoops better be careful what I say, I might upset somw HCP's ;-) I'm not a HCP in case you hadn't guessed that already but I totally agree that the approach that you are 'young and healthly' so don't need to see a specialist is rubbish. you won't stay healthly without help, although the 'young' bit I'm afraid you can't do anything about.
It would be nice if you could link up with another DAFNE centre, however there aren't any on our list, DAFNE Central would know better and hopefully someone from there will answer. You don't say where in Hampshire, its a big county. There is a Centre in Salisbury and there
are ones in London that may be not too far if you are in North Hampshire. At the very least I think you should be seen by a Diabetes Care team at your local hospital. There is definitely one in Southampton because I was under there before I moved.
You can always email us using the contact link at the bottom of pages on the website with your address and we can pass this on to DAFNE
Central to see if they can help.
 
Apr 20, 2009
marke 657 posts

Topic: DAFNE Online Mobile / Mobile site released

works fine on a HTC TYTN II using Internet explorer !
 
Apr 17, 2009
marke 657 posts

Topic: General Discussion / DAFNE in peril at the Wirral

Becky, sounds like you ARE upset by this decison. In which case what you need to do as someone who comes under the PCT’s catchment area is to email them on the address below and ask for an explanation as to why they are withdrawing funding for DAFNE and pointing out all the benefits. Also get anyone else who you know to do the same. If any of you are prepared to email the local paper about it as well even better.

The address on the PCT’s website to email is [email protected]

If you don’t get any response from that address, email [email protected]

This is the Patient Advice and Liaison Service and its their job to help you with complaints and contact the right people.

The more people that complain the better the chances they may be 'encouraged' to change their decision.
 
Apr 17, 2009
marke 657 posts

Topic: Carbohydrate Counting / Useful link for looking up CPs

The search function is now implemented in the carb counting pages and the ability to add your own items now works properly ! No one told us it didn't and unfortunately in our test environment it DID work. Anyway it all works now, you may have to enable javascript to get it to work though. If you don't know what this means, chances are it WILL work for you.
 
Apr 5, 2009
marke 657 posts

Topic: DAFNE Online Mobile / Mobile Feature Requests

At the moment its planned to be a WAP/cut down version of the site. An app would not be suitable because to update it you would still need to connect to the site. So a better solution is to just provide a mobile version of the site. However I take on board your comments re carb counting and the handbook, should we get time to do it.
 
Apr 2, 2009
marke 657 posts

Topic: General Discussion / DAFNE in peril at the Wirral

I have received word today from DAFNE central that the PCT for Arrowe Park, Wirral are withdrawing all funding for DAFNE and
forcing the HCP's/Trainers to cancel the courses they have already arranged. This PCT is obviosuly VERY short-sighted and lacking in common sense !

Do any registered users know of anyone who is actually in this PCT's area. We would like to get complaints sent to the PCT about
this policy, but they really need to come from people who are actually in the PCT's area. With new government policies on choice
and openness in the NHS, the PCT should listen to all complaints and act upon them.

Its important for both DAFNE and us, as people who have benefitted from it, to give as many people as possible to also benefit from it. To do this we need to pressure any PCT that wants to make short-term decisions based on presumably short term cash flows, to reconsider.

Please post here if you know of anyone in this PCT's area who could help.
 
Mar 27, 2009
marke 657 posts

Topic: Site Development / Site attendance

Rebecca,
Goggle analytics is aimed at marketing and advertising not really increasing ranking which works a different way. Also we are not trying to get top of google, the site is primarily for DAFNE graduates NOT general web users. A high ranking will let graduates find us but their course organisers should be telling them anyway (hopefully).

Keith,
No plans to add links to the evil empires I don't think ;-) My personal view is social network sites are just a marketing tool to part people with personal information, but then I work in IT and have to fight the spam generated by them everyday :-( Anyway this is a site for DAFNE Graduates, if people want to communicate with each other great but its down to them how to do it, we don't need to endorse or advertise these sites which are already popular enough. We do take on board comments for site improvements and will try time permitting to implement suggestions.
 
Mar 23, 2009
marke 657 posts

Topic: DAFNE Online Mobile / Rationale - Please read

We have received a requests for versions of DAFNE Tools that could be used on a mobile phone running a web browser. Many mobile phones these days are capable of doing this since they all have internet connectivity built in and are being used more and more for 'mobile' applications.

The problem is each type of phone has its own web browser which tends to be something produced by the phone maker and not a standard web browser like Internet Explorer, Firefox, Chrome, Opera or Safari. If we are going to produce a mobile version of the site then we are going to need people to help us test it on their mobiles. We don't have the resources to be able to test on a number of mobile devices ourselves. Thats where you all come in.

If you are interested in a mobile version of the site, please respond to this topic. Please also indicate if you are prepared to test the beta versions as we produce them. If you are prepared to help test the site on your phone then in your post tell us the make and model of your phone.

For example , I have a HTC TYTN II ( o2 call it an XDA stellar, T-Mobile call it MDA Vario III) that runs windows mobile 6. Simon I believe has an iphone, so we have two potential platforms covered but there are lots and lots of others. So all you nokia, sony ericsson etc people get posting.
 
Mar 17, 2009
marke 657 posts

Topic: Site Development / On line carb counter

yes we could, I will take a look at changing it.
 
Mar 17, 2009
marke 657 posts

Topic: Carbohydrate Counting / Useful link for looking up CPs

Well I agree it would be nice to be able to access via a mobile. We maybe need to look at have a cut-down version to display on mobiles, its possible just a question of the time to do it. What kind of phone are you trying to view it on ? There are so many types and phone browsers.

The download to phone version is a bit more tricky. It would need to be java based which is a different development system to the web site. Again if time permits we would love to do something like this, but at the moment its not something I think we have the resources to do. We will let people know if we are working on something like this, so we can ensure it is what is needed.
 
Mar 16, 2009
marke 657 posts

Topic: General Discussion / More forums ?

Would you like to see more forums on the site ? IF so do you have any suggestions as to what they should be about ? Please post your suggestions here and we will get the forums created so you can all make use of them. The forums only work as well as the contributors, so if we are missing anything please let us know.
 
Mar 16, 2009
marke 657 posts

Topic: Questions ? / Type 2 & DAFNE

Thanks for a more 'official' reponse on this. On this site we are obviously more focused on Type 1 and DAFNE, but thats not to say we should exclude any questions. If we can help any Diabetic then we are more than happy to try ! Obviously responses from HCP's are preferred on this subject since you are the people trained on these subjects, so thanks for your input.
 
Mar 16, 2009
marke 657 posts

Topic: Carbohydrate Counting / Useful link for looking up CPs

yes ! In principle. We just need to work out how to implement it....

I guess you would want to be able to search for a particular item ? Or a matching in the item field e.g. anything with 'chips' in it
or anything with 'bread' in the description ? There seems little point in search the other fields like CP or Weight or even catergory.
 
Mar 12, 2009
marke 657 posts

Topic: Questions ? / Type 2 & DAFNE

Once again I want to stress I am just a Diabetic and NOT a HCP, it would be better if a HCP provided some input, but in the meantime:

I think you have to understand/remember that Type 2 is NOT the same as Type 1. In Type 1 you cannot produce insulin because your islet cells have been destroyed ( pretty much). This means your body responds 'normally' to insulin and its effect is similiar to insulin produced by the pancreas. In Type 2 your body 'resists' or does not process insulin fully in the process of moving sugar into the cells. For this reason a course aimed at dynamically altering insulin intake (DAFNE) to manage blood sugar is NOT going to work for people whose bodies resist the insulin. For this condition a different approach is needed, I would presume one that IS more focused on Carb Counting. I will know more after the 17th March, we have a 'DESMOND' trainer giving my Diabetes support group a presentation on it. I can provide more info then if anyone is interested or you can visit the web site above.

One thing I'm sure of, any kind of Diabetes education is a good thing and as many people as possible should get the chance to do it. Any one who has done DAFNE knows of the many many benefits it brings....
 
Mar 10, 2009
marke 657 posts

Topic: Questions ? / Type 2 & DAFNE

To add to what Simon says, I can maybe add 'some' advice.

DAFNE is very much directed at Type 1 because of the insulin management it teaches. Whilst insulin use is not exclusive to Type 1, use of
tablets probably has an effect that doesn't match the DAFNE process quite as well. Is there help for Type 2's ? Yes absolutely, the equivalent
training for Type 2 is generally called DESMOND (http://www.desmond-project.org.uk/ ) although it has different names in some regions under some PCT's. I would suggest you speak to your GP or Diabetes care team about DESMOND, to be honest they should have already known about it when they told you that you were not suitable for DAFNE. Diabetes education is VERY important and anyone who is keen to do it should at least be given the option ( although it may involve waiting to get a place on a course).

This is not a definitve answer since I'm not a HCP, but hopefully it will help until a better answer is provided.
 
Mar 8, 2009
marke 657 posts

Topic: Carbohydrate Counting / Useful link for looking up CPs

Yes !! Hopefully the Carbohydrate portion list will be online in the next few days or so. I have just submitted a beta version of it for testing and checking by the other site admins. If all goes well it will be on this site once it has been checked. I will checkout the other sites referenced above for future versions, you can't beat a bit of plagiarism ;^)
 
Mar 4, 2009
marke 657 posts

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

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
 
Mar 3, 2009
marke 657 posts

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

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 ;-(
 
Feb 28, 2009
marke 657 posts

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

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.