May 14, 2012
marke
395 posts
Topic: General Discussion / no DAFNE
I know what you mean, I live in fear of my consultant retiring. He is getting on now and I fear without him my clinic will fall into the same mode of operation as yours. Fortunately he is a strong character as well as being a superb consultant. Its hard when you see someone different all the time and cannot build a relationship. Let alone someone who understands DAFNE as well.
May 14, 2012
marke
395 posts
Topic: General Discussion / Accu-Chek Aviva Expert Meters
thanks thats the response I wanted to get
You just need to remember that a lot of people are not as keen as you to build a regime. I have met many people through DAFNE and Diabetes UK that are happy to just roll again with the basics. This is why I questioned the 'could be doing damage', its important to seperate an opinion from evidence based on medical research. I don't have any problem with people expressing opinions, I just like to make clear thats what they are. Many people take what the read on the internet as fact whereas the truth is anyone can set up a website and publish a load of garbage, there is some truly scary stuff out there. I'm not suggesting you are necessarily wrong, I agree with a lot of what you say, but for the sake of a balanced and objective site its good sometimes to question people.I still don't think you can have an automated approach to Diabetes management because there are so many variables involved, but if people want to try thats good. The important point is they understand what they are getting is a best guess and not 100% accurate. Just like your meter, which gives you a best guess at your BG NOT a 100% accurate figure. Hopefully in our lifetimes we will see continuous BG meters linked to pumps that act as psuedo pancreas's or
even stem cell therapy that will restore islet cells, in the meantime we just have to make do with life as it is.
May 14, 2012
marke
395 posts
Topic: General Discussion / no DAFNE
Not sure what I will do, mine has just pulled the plug. I have not been told about Sheffield withdrawing though how did you find out about them withdawing ??
May 14, 2012
marke
395 posts
Topic: General Discussion / Accu-Chek Aviva Expert Meters
NRB, there is no 'basic' DAFNE syllabus there is A DAFNE syllabus. I have seen lots of debate about digestion profiles and post meal spikes on other sites, however most of the discussions seem to revolve around peoples personnal beliefs rather than detailed medical research. I therefore don't believe its fair to say 'you could be doing damage' since there is no evidence to back up this claim. As we often repeat ( or favourite mantra) everyone is different and no two people will respond the same to insulin/food or any other number of factors. If someone wants to inject post meal there is no problem with this as far as DAFNE is concerned.Its interesting that the 'expert' meter is limited to people who have had some training in does adjustment and calculation. There is discussion in other forums on the site about adding dose calculation to the DAFNEOnline App and this backs up my point that it is NOT a trivial thing and even meter companies are wary of providing the functionality. Personally I wouldn't do it but I'm not the one developing the app.
May 8, 2012
marke
395 posts
Topic: Site Development / Have "amber" colour for just-over BG
Well I can raise the issue at a DAFNE User Action Group meeting with regards to the DAFNE Course but that is NOT the same as this site which is not part of the DAFNE Programme and is run outside of it. That said we have to abide by the rules set down by the DAFNE Programme to a degree. I think I am guilty of confusing people here, apologies for that. People seem to be approaching this from a different angle to me. I will try to explain again what I mean.Currently the graphs in the Diary pages shown anything outside the 'standard' DAFNE range as red. This is because years of research into Diabetes and DAFNE have shown that if you keep your BG within that range you substantially reduce the chances of you having complications. This research is what I refer to as 'evidence'. There has been no research, as far as I am aware, on the risk of complications in a range above this say 7.5 - 11, this is the range people are suggesting should be shown in yellow. If we as a site show this range in yellow we are suggesting to people that there is less danger being in this range than the red range, however there is no evidence to back this up. A number of posts seem to be looking at this from a 'one off' point of view i.e if I have one reading above 7.5 then its not a problem since I can correct to bring it back in range. I agree for a one off that is ok however at what point do the number of readings in the yellow range constitute a 'red' situation i.e an increased risk of complications. This is the root of my concern, NOT one off readings but the average being outside the range. In addition everyone is different so an average of 8.0 for some people could be a 'red' situation where as for others it could be fine. This is why I am not convinced that this is a good idea and would not be comfortable with it being implemented without consultation with Medical experts rather than just graduates which is what we all are.
If people can come up with a good reasoned arguement to justify this I am happy to take it to the DUAG and DAFNE Programme even if I don't personnally agree with it. However I think it needs more discussion with a wider range of people on the site to produce a good concensus.
May 8, 2012
marke
395 posts
Topic: Site Development / Have "amber" colour for just-over BG
There IS scope for change and innovation, the DAFNE programme is constantly evolving. I am on the DAFNE User Action Group committee that tries to do this. However as I said change needs to be backed up by evidence not opinion, opinion drives the change by getting research to provide evidence. Yes the majority of people on this site would probably support change however this is NOT the majority of the people who have done the DAFNE course its the minority. I am happy to discuss the idea of banding with the DAFNE Programme team but I'm sure their position would be the same as me, it would only be done after research to understand the effect it hasa on peoples control. Thats not to say Simon won't add it to the site, it merely would not be supported by DAFNE until they have gathered evidence of its benefit. It may well benefit some people on this site but may just confuse others and the DAFNE Programme is for all.
May 7, 2012
marke
395 posts
Topic: Site Development / Auto calculate QA from BG - let's get it right
make that two grumpy old men I think it should be defaulted to off since it will be too complicated for 90% of people and I don't believe its possible to getit 'right', we are are not machines that can be defined by formulae rather than random BG events looking for a pattern
May 7, 2012
marke
395 posts
Topic: Site Development / Have "amber" colour for just-over BG
When I say 'evidence' I am referring to research to investigate something not personal opinion which is not medical evidence, it is one persons opinion. It is clear you believe it is a good idea and correspondingly clear I do not. As I said Simon may well implement it but I believe it should be an option that a user turns offor on because it does not form part of the DAFNE programme or course which is generally what people on this site are looking to follow,
May 6, 2012
marke
395 posts
Topic: Site Development / Have "amber" colour for just-over BG
Sorry I think this is a bad idea, but if others want it then maybe Simon can implement it as an option. I accept that 7.4 and 7.6 are pretty much then same but a reading of 10.5 is not for me amber its red. I think since there is no evidence of 'less severe' levels outside the suggested 'DAFNE range' then anything outside is red. That said I don't worry about the colours, its a lot more complicated than Green, Amber, Red. I could be in the 'Green' the whole time and suffer problems or be in the Red the whole time and never have a problem. I don't think its worth people discussing the difficulty of implementation, thats not relevant to people wanting it or not.
May 6, 2012
marke
395 posts
Topic: Site Development / Slow site response....
Simon is correct the security is there for a reason and unfrotunately what he told you to do will not prove anything nor help. A proxy is used to 'speed' up web pages and control which pages you can access. It has nothing to do with 'ping' which uses a completely different protocol and will be treated completely differently by your companies security systems. It is quite possible you can browse other sites without issue and not ours, it very much depends on thecontent of the other sites. Changing browser is unlikely to help since it is unlikely to be an issue with your local machine more your companies network.
As you have found, because the issue does not exist at home then the issue is with your companies systems. Obviously we cannot comment on these, I have rules for my users and unless they can provide a valid business need for me to grant them an exception to access a site then I won't. I suspect you will just have to live with it, sorry
May 3, 2012
marke
395 posts
May 3, 2012
marke
395 posts
Topic: DAFNE Online Mobile / windows phone app
to answer a couple of points raised on this thread. Firstly no there is unlikely to be a window 7/8 version of the app we simply do not have the resources to develop one at the moment. I can develp windows apps however pretty soon windows8 will be the preferred platform and since there a radical changes in this OS then I see no point in doing anything until then. In addtion sadly ( or happily depending on your viewpoint) Windows in a niche OS on mobile platforms it has a tiny portion of the market compared to iPhone or Android, meaning very few users will actually want a windows version of the app. Secondly you can download and read the pdf on ANY mobileplatfrom including iPhone/Android. Lastly its not true that windows can run more programs with compatibility than iPhone/Android, windows mobile is NOT windows and cannot run many programs. If you were talking about a PC thats different but a mobile version is vastly different, there is a huge need for windows mobile apps which is were they are behind Android/iPhone in this area.
May 3, 2012
marke
395 posts
Topic: General Discussion / Prescriptions
Most GP's should now be doing online repeat prescriptions, its set to become mandatory as part of the rules on GP's and chemists. So if you cannot do online ordering you should be able to soon. You should also be able to get your prescription sent automatically to the chemist of your choice, leaving you with just one trip to the chemist to pick up the prescription. Some chemists even do home delivery, however as you work thats not an option. They would not be allowed to deliver it anywhere else as its a prescription drug AND its temperature controlled. I have never heard of bulk prescriptions but its possible. I don't think the chemist would have a problem they are just glad of the business and the suppliers don't have 'rules' only the 'drugs licensing agency' have rules over drugs
May 3, 2012
marke
395 posts
Topic: General Discussion / Gluten Free Bread
sorry are you talking about this site or the actual book ? The CP value is 1-1.5, in my electronic copy that I did the site from its 1- and then 1.5 on the next line so the 1-1.5 has got split over 2 lines. So to sum up its not a special symbol it just has part missing for some reason.
Apr 24, 2012
marke
395 posts
Topic: DAFNE User Group / Neuropothy -advice please
Hi, can I ask you to post this in the 'ask the HCPs' forum since you are more likely to get a response. There are some very good experts that read that forum and with a bit of luck Simon H might respond. There is very little he doesn't know about Diabetes if anything and he likes a challenge thanks
Mar 25, 2012
marke
395 posts
Topic: General Discussion / A Petition Regarding Changes to the NHS
Alan, No need to apologise for me its a valid concern and there is no reason it shouldn't be raised. It potentially WILL affect DAFNE so is hardly off topic. If people want to sign the petition they should if they don't no one is forcing them to. I agree people posting stuff that is NOT about the changes but their views on party politics is not very helpful.The biggest issue for me and a lot of the NHS staff is the implications have not been fully considered or if they have they have not been discussed with the NHS. I am not against the bill in principle I have to say, however its far from clear how it will work and how it will affect Diabetes services. It could mean things get better or it could mean things get a lot worse. In an ideal world, the DAFNE Programme would be sold as a 'service' to GP consortia potentaily making it available to be a lot more Diabetics. Sadly I suspect it will not be that simple.
Anyway you DO get my vote to discuss it on the site.
Mar 19, 2012
marke
395 posts
Topic: General Discussion / Ineffective BI?
Hi, Yes I am aware that manufacturers claims don't always match their products. However in the case of medicines they are only licensed for sale after extensive testing. Hence if it says 24 hours then it 'should' last that long, if medical professionals don't comply with the instructions for use on a drug they can indeed get into trouble. Meanwhile in the real world.....The reason I always suggest people consult their medical team is a large number of people are not confident enough to experiment with their medication on their own. They need the assistance of their medical team. If you are confident enough to do it, thats fine as well you just have to bear in mind not everyone is.
I have never used Lantus so cannot comment from direct experience but others suggest that Levemir is more flexible than Lantus for split doses, of course this will never be the case 100% of the time since we all react differently to the same drugs.
Mar 18, 2012
marke
395 posts
Topic: General Discussion / Ineffective BI?
Simon, presumably your Diabetes team agreed to your splitting your Lantus dose ? I ask because the HCP's I have spoken to insist that Lantus IS a 24hr insulin and that Levemir is better for splitting your dose. That said, in agreement with the original theme of this thread, one size does NOT fit all and Lantus may work better for you. I agree with your description of a normal bodies operation, although hopefully in years to come if we all get CDM's then we might have the feedback mechanism to allow us to control insulin release in our bodies to simulate a 'normal' pancreas.The normal way of caclulating your BI needs is to not eat, monitor you BG and adjust your BI accordingly. It is supposed to provide your non-eating insulin requirement which largely should be 'relatively' stable, of course I say largely because life just isn't that simple unfortunately. As you have found there are variations and the only way you can tackle these really is QA adjustments. Its not perfect but then any insulin regime is just a rough simulation and thats the best we can do.
Mar 18, 2012
marke
395 posts
Topic: General Discussion / daily average of QA
Well I'm an IT person but if you put certain types of computer in front on me I wouldn't know where to start. The same goes for medical people, just becasue they have studied medicine doesn't mean they understand Diabetes. The good ones will openly admit this, the bad ones will make bland comments like 'that seems a bit high' without explination or justification. I would just ignore it, if they didn't provide a sound and clear explination as to why it is high then they shouldn't have said it in the first place. My daily dose varies all over the place and I see no reason to work out an average since I don't see what benefit knowing it would provide.
Mar 18, 2012
marke
395 posts
Mar 7, 2012
marke
395 posts
Topic: Questions for HCPs / Accessibility for Blind/ VIP diabetics
hi, the card counting book is available in PDF, you can access it by clicking here Its true I dropped the accompanying text from the book and on occasion had to abbreviate the descriptions to fit into the web format. With regards to reading labels when out, in an ideal world all food will have what are called '2D barcodes' on it. This is the new kind of barcode that contains more than just a number but can contain a lot of text allowing things like product details and extra information. At the moment these are used as gimics and contain links to websites etc but could be used for a lot more. There are free readers for these in the app store. Anyway enough of the techno babble, hopefully the PDF version will help and the course is going well.
Mar 4, 2012
marke
395 posts
Topic: Questions for HCPs / Accessibility for Blind/ VIP diabetics
Hi, no its not true. There is a web version on this site that you could use although sadly its not fully compliant with VIP standards. There is also a PDF version that is not generally available but I'm sure we could get permission to send to you.With regards to doing the course there is no reason that you cannot do it. Generally there is very little reading needed and any that is could be done for/with you by someone else on the course. One of the best parts of the course it's interacting with other diabetics which you will sadly miss out on.
Sorry but it sounds like NHS political correctness that they are not letting you do the course with others, which is a great shame. They probably aren't allowed to call you blind either just like diabetes UK want to call us people with diabetes and not diabetics. As you rightly say you are not stupid so why not let you integrate with others that understand your diabetes.
Anyway, rant over. If we can do anything to help let us know
Feb 22, 2012
marke
395 posts
Topic: General Discussion / Spare diabetes kit
All, If you check with the maker of your current meter they will be more than happy to provide you with another one for free. Not long ago I left my stuff behind at a meeting. I called the manufacturers helpline listed on their website and they sent me two meters delivered the next working day. Its in their interest to keep you using their meter. The money is made on the test strips. Its the same reason a mobile phone comapny will give you a free phone if you sign a monthly contract. Its all about the potential money they make. The test strips cost much much more than the meter....
Feb 8, 2012
marke
395 posts
Topic: DAFNE Online Mobile / Nokia N8
Just to clear up a few things having just noticed this thread. Simon IS the site admin and the iPhone app developer, a guy with many talents ( except security of course, he needs me for that ). The android app was very kindly developed by Keith Clarke, who realised thay I was never going to get it done and took it on himself. He did a very good job I believe, although I don't have an android phone. With regard to the development of versions of the app for other phones, we would like to do it but its a question time and resources. All of us have 'day' jobs and other stuff to do as well as DAFNEOnline. If anyone with the necessary expertise volunteers we are happy to work with them to produce an app, however at the moment we don't have time to do it ourselves.
You can contact any of us via the Message Box system on the right-hand menu or by emailing admin@dafneonline.co.uk we always try to respond to questions although we may not always give the answer you want.
Feb 8, 2012
marke
395 posts
Topic: Questions for HCPs / Fitting when hypo
Puts in perspective some of the moans we have about being Diabetics. I would imagine having fits all the time is really not a pleasant experience. I would have thought in an ideal world they would have given you a Continuous Blood Glucose Monitor so you could maybe work out the 'tipping' point that causes you to fit. Generally most of us do not fit when hypo but some I guess are particularly unlucky and their bodies are more sensitive to low blood sugar and the effects it has. I guess you also get the double-whammy of a fit causing you to expend a lot of energy meaning you need more carbs to get your BG back up and to keep it up.Thanks for sharing your experiences anyway, if nothing else it shows people that they are not alone in suffering a problem like fits and hypos