Search the DAFNE Online Forums
656 posts found
|
Feb 22, 2011
marke
657 posts
|
Topic: Site Development / DAFNE Online iPhone application - help with content/design needed Not at the moment, we don't really have the time to implement one and have no 'test' bed to test it on. The android app is hardly progressing so taking on another platform is not going to happen very soon. I also think that you need a special version of the development tools to develop for windows mobile, I have 'standard' development tools for windows but NOT for the mobile version. So I would go get your iPhone back ;^) ( I would anyway, I had many fun years with earlier versions of windows mobile and won't be going back to it ) |
|
Feb 22, 2011
marke
657 posts
|
Topic: General Discussion / Dispatches - Hospital Food When I fully applaud your efforts and aims, I can understand why it doesn't happen. Unfortunately politicans are great at talking not so good at doing. With budgets ever decreasingand re-organisations on the horizon realistically its going to be low on a PCT's agenda. I'm not suggesting it should be just pointing out the realities. I didn't see the programme so I can't comment, I tend to avoid stuff like that since they mostly seem to have an agenda before making the programmes and the outcome is always something 'sensational'. A lot of stuff at hopsitals is now outsourced to the most 'competitive' bidder, this is the root cause to most of these issues. The same thing happens with cleaning at hospitals, the cheapest cleaners not the best cleaners. Not sure how you 'break' this system. My biggest issue with hospitals was convincing the HCP's that I could manage my own diabetes and didn't need them to tell me when to test and when to inject. They seemed to want to 'take over' my management for me. This obviously was not going to happen so it caused a few 'tense' moments until they got the idea that they would not be doing it. |
|
Feb 19, 2011
marke
657 posts
|
Topic: General Discussion / BGs and Dehydration sorry but I think its like most stuff on the net, written by people with no real expertise and believed by millions. If your blood changed density so much that it had a major effect on your BG's what effect would it have on the rest of your system, the change in blood density I mean. Sorry butI just don't believe that it has that much of an affect on BG's . I might be wrong, but I would take it more seriously if it was the result of a research study rather than an article by someone who doesn't seem to provide their credentials for making such a statement. |
|
Feb 18, 2011
marke
657 posts
|
Topic: General Discussion / DAFNE Research News The following article has been sent to us by the DAFNE Research programme. It contains all the developments in DAFNE. It is important to undertstand that this is research so the trials detailed below might never be rolled out nationwide. It does however show that things like 5 x 1 day courses verses 5day courses are being considered. Some of it is a bit 'technical', so if you have any questions let us know and we will try to get them answered. DAFNE Research Update January 2011 The DAFNE Collaborative is committed to the continued improvement and development of DAFNE through Research and Development. The DAFNE programme provides a unique test-bed to conduct research not only to improve Type 1 diabetes management but also to learn more about educational interventions in diabetes and long-term conditions more generally. The DAFNE Research group are currently involved in 3 research programmes: 1. National Institute for Health Research Grant The £1.7 million research grant will fund a varied programme of research (A to F below) over a 5 year period, which will be underpinned by economic analyses to establish its cost effectiveness. 1A Research Database Further development of the DAFNE web-based database to examine the relationship between biomedical and psychosocial outcomes. We will record important health events to calculate cost-effectiveness. Update: Recruitment is ongoing until September 2011. Pre course data has been entered for the 1081 participants recruited to date and one year post course follow up data collection for 404 patients so far. Research investigators are already planning and developing protocols for the utilisation of this data to answer a range of questions regarding the impact of DAFNE. We are now actively encouraging DAFNE researchers to make use of the valuable data resource held within the DAFNE Research Database. It is anticipated that the publications using the data will commence in 2011. There will be an oral presentation on the Research Database at the Diabetes UK Annual Professional Conference 2011. 1B Mixed methods study Undertake a combined quantitative and qualitative approach to understand factors which facilitate/impede self-management to help explain patterns and predictors of successful outcomes not only in type 1diabetes but will also inform programmes in Type 2 diabetes. Update: Recruitment completed. Follow-up data collection at 3, 6 and 12 months post course has been completed. Interim analysis of the 3 & 6 month data has been performed with 12 month analysis currently underway. A subgroup of 30 patients and 12 educators from 5 of the 11 DAFNE centres took part in an in-depth interview (Qualitative) study. Results from the Qualitative study will be presented as a poster at Diabetes UK Annual Professional Conference 2011. Some findings have already been published. 1C Comparison between DAFNE + MDI and DAFNE + CSII Pilot study Develop and conduct pilot study comparing DAFNE training plus continuous subcutaneous insulin infusion (CSII; pump) against DAFNE plus multiple daily injections (MDI). DAFNE curriculum developed to use with patients new to insulin pumps and training given to DAFNE educators.
Update: 5 CSII courses and 4 MDI courses were completed. All follow up data , at 6 months post course, have been collected. Preliminary analysis of the results are underway. The experiences of this pilot have informed the development of a major RCT now funded by the NIHR HTA. 1D DAFNE delivered over 5 consecutive days and 1-day / week for 5 weeks Undertake a trial to establish whether intermittent training is as good as the 5 day course. This has the potential to allow those who cannot attend for 1 week to benefit from training and permit more flexible delivery where educators work part-time. Update: 5-week course curriculum and resources have been developed. Educator training sessions completed in May/June 2010. 12/14 of the 5 week courses and 12/14 standard 1 week courses as control group have been run upto Feb 2011. Follow up data is collected at 6 weeks, 6 months and 12 months post course with data collection to be completed by May 2012. 1E Repeaters intervention Develop and pilot an intervention, incorporating research described in study B above, for those DAFNE graduates needing additional input. In January 2011 an inaugural meeting was held for development of intervention
1F User involvement Resource and develop our existing user group, who will contribute to all aspects of this programme. Update: 15 DAFNE Graduates elected by the DAFNE User Group to form an active group – DAFNE User Action Group (DUAG). Training in how users can be involved with health research was provided in July 2009. Two DUAG representatives sit on each of the research groups. Work to assess the impact of DUAG involvement in research has commenced with observations of research group meetings attended by DUAG and interviews with DUAG representatives and researchers. 2. REPOSE : Relative Effectiveness of Pumps over MDI and Structured Education An NIHR HTA funded trial comparing optimised multiple insulin injection therapy (using rapid and twice daily long-acting insulin analogues) with continuous subcutaneous insulin infusion (CSII) in adult type-1 diabetic patients provided with high quality structured DAFNE. 3. The Irish DAFNE Study In 2005 the Health Research Board in Ireland awarded the Irish DAFNE Study Group a five year programme grant under their Health Services R&D award. Randomised controlled trial evaluating 2 methods of follow-up care post-DAFNE training, comparing structured group follow-up care with a return to usual clinical care.
Update: All baseline, 6, 12 and 18 month follow-up data has now been collected. International Comparison Study A cross country comparison study among people with Type 1 diabetes in Ireland, the UK and Germany who have completed a structured education programme. Quantitative study A common dataset is being collected across ten centres in Germany who deliver the precursor of DAFNE, the Insulin Training and Teaching Programme (ITTP), ten DAFNE research centres in the UK and seven DAFNE centres in Ireland. Follow up data to be collected at 12 months post-DAFNE or post-ITTP training. Qualitative study Interview 16 patients and 4 educators from each country before DAFNE or ITTP with repeat interviews within 6 months following the course to explore their experiences, behaviours and opinions. Courses in all three countries will also be observed in their entirety with in-depth field notes accompanying the observations.
|
|
Feb 4, 2011
marke
657 posts
|
Topic: Questions ? / BG rise at end of Lantus Hi, I think it is a case of Lantus running out, but like others I'm not a HCP so its just personal opinion. Given the scenario you originally described your QA should have stopped working ( 6 hours after lunch, it generally should only last 4-5 hours) and you then need your BI to keep your levels steady. If it has also reduced in effectiveness ( it should 'tail' off gradually between 12 and 24 hours according to its profile) your BG will start to rise. The only sure way is to take your BI and not eat anything all day, if your BI is right then your BG should stay at similiar levels. This is not an easy thing to do I know but that is the theory anyway. Although slighting your BI dose does mean you have two lots of BI acting at the same time, they should again in theory be reducing and increasing in tandem and so not be acting totally at the same time.I think most of us do find a split dose better, but as ever we are all different. If your control is quite good now it may be you can see more effect if you split your dose. It may be worth a try however it doesn't sound like your consultant would support it, so you really need a DAFNE educator to support you otherwsise its going to be hard to do on yuor own. |
|
Jan 27, 2011
marke
657 posts
|
Topic: General Discussion / Type 1 Diabetes 'Cure' test |
|
Jan 27, 2011
marke
657 posts
|
Topic: General Discussion / Type 1 Diabetes 'Cure' I don't know first we get locked out of the loft due to homes being well insulated, then some quack starts removing our insulin capability, equal rights for us mice, and free cheese on the NHS ! thats what I say.Sorry even if this article made sense, which I don't beleive it does, testing it on mice and testing it on humans is a huge difference. Any effective output from something like this would take at least 10 years minimum. Sorry but I don't believe there is a 'cure', maybe a prevention one day but thats still a long way off. Most of the source article quotes talks in maybes and perhaps' , they have no real proof of their theories as yet let alone any evidence of a cure. There are always articles like this around, when someone actually launches a mythical cure in the real world and its given to real Diabetics them I will sit up and take notice. |
|
Jan 27, 2011
marke
657 posts
|
Topic: General Discussion / Android App sorry, its not going to be soon. I have just not had any time to work on it recently and not sure how soon I will be able to. If there are anyandroid developers who can help then great otherwise it will be when I can get the time to work on it. sorry |
|
Jan 21, 2011
marke
657 posts
|
Topic: Questions ? / Difference in BG from different fingers! I think you are missing the point a bit here. They have never claimed the meters are 100% accurate and indeed I think it is almost impossiblefor them to be 100% accurate. I think people trust too much in medical advances and think anything can be done nowadays. There is also the fact that your BG reading in your hand doesn't necessarily reflect that in the rest of your body. It is an estimate, nothing more, intended to aid your control. I suspect it will never be 100% accurate but compare it to urine strips which many of the people I know remember and you realise how lucky we are ;-) |
|
Jan 19, 2011
marke
657 posts
|
Topic: Site Development / DAFNE Online iPhone application - help with content/design needed John,The verified carb values on the website and thus in the app, are supplied by the DAFNE Programme's themselves so we cannot 'standardise' or change them in any way. On the site itself it shows you the AU carb values and UK members the UK values. I'm not sure what the app does without Simons input. Although 'internationalisation' is possible I'm not sure how practical and desirable it is for most people. We would need to expand the carb data substantially and that would rely on users to input it. Given that we have been running 2 years and there have not been a huge number of entries, thankls to those that have added entries though !, I'm not sure the idea would work. We how have 5 countires involved with DAFNEOnline which is again not a large base to draw carb info from. While we appreciate the suggestions I'm not sure many will actually get implemented because of the issues above. Thats not to say we won't do them just I'm not sure how we can at this stage. There is no reason on the site that I cannot add a country field to the carb entry 'add' form since the database already has a country field. I would need to decide how to filter the output though. From the site perspective I will have a think about it, with regard to the iPhone App I will let Simon repsond on that. |
|
Jan 17, 2011
marke
657 posts
|
Topic: Questions ? / Bad hypos even when following all dafne rules! Claire with regard to registering as a graduate, I'm not sure what you mean by 'hospital code'. If you email us using the link at the bottom of every page, with your name, what hospital you did your DAFNE Course at and roughly when (exact dates are not necessary) we can get you verified via DAFNE Central and your account changed to graduate. You will then be able to access the online handbook.You can also send us your 'hospital code' however I suspect it is more likely to be a DAFNE Centre number, a number of centres seem to confuse this with the DAFNEOnline code which is generated by them on the site itself. There are codes per centre NOT per patient. |
|
Jan 16, 2011
marke
657 posts
|
Topic: Questions ? / Bad hypos even when following all dafne rules! Hi, I'm not sure why you would need to take 3 CP's to 'keep your BG up' overnight. This would suggest your background insulin is too high.You should be able to have 'stable'-ish BG's if you don't eat anything with just background insulin. If you are having to eat without injecting that doesn't sound right. Having accurate estimates of CP's should only affect your Quick acting insulin. You don't say when these hypo's occurred and under what circumstances. Are you doing more exercise, have other things changed in your day to day life. You need to look at the big picture, which is what your Blood Glucose Diary will hopefully tell you. Look for patterns, especially round the hypos and try to spot causes. You can also post your BG's on here if you want too, to get advice from others, although I appreciate many people (including me) find it difficult to share their BG's. P.S You should get yuorself registered as a graduate on the site, having done a DAFNE course. |
|
Jan 16, 2011
marke
657 posts
|
Topic: Carbohydrate Counting / Conflicting Adivce Hi, You don't say if your new nurse is DAFNE trained I presume not. The DAFNE Handbook says 3.5 is the 'floor' and with DAFNE you are managing your BG much more tightly so thats why there is a lower figure. With regard to correcting a Hypo, I have never been told a 'range'to correct too and I can't see anything in the handbook. The aim is not to overtreat a hypo by eating too much, so just increasing your BG higher than the floor is the aim. This invariably leads to your BG being higher than that, but you just don't want it to be +10. With regard to diet, I would guess their 'take time' advice is due to your DKA. If you try to lose weight too quickly or don't give enough insulin this is the path to DKA, so slowly and reliably is the way. Easier said than done I guess. Finally if you contact your original DAFNE Centre or us, we can verify you as a graduate and change your account to reflect this. This will mean you can check stuff like the above in the online handbook. |
|
Dec 29, 2010
marke
657 posts
|
Topic: General Discussion / Brittle Diabetes unfortunately I think the only answer to brittle diabetes is an islet transplant. A little while ago we were fortunate enough to have Richard Lane the president of Diabetes UK attend a DAFNE User Action Group meeting and he is/was a 'brittle' diabetic who had an islet transplant. It is not a 'cure' as such as it doesn't last forever, but apparently it made a huge difference to him. Another thing that helps, but at the moment is still expensive, is continuous glucose monitoring. These devices give you a BG reading every 10 mins or so and apparently also help greatly in managing BG as you can keep track of the effects of everything you eat.All I can say is keep trying to control your diabetes, its not easy. We all have days when our BG's don't make sense, but to be in that situation all the time must be very frustrating. Hopefully there are others on here who can offer more practical advice based on experience. |
|
Dec 22, 2010
marke
657 posts
|
Topic: General Discussion / Allergy and Diabetes Hi, the 'doctor' on the childrens ward was he a Diabetes Consultant ? If not on what basis is he deciding it is NOT related to her allergy problems. I would get an appointment to see a Diabetes consultant and go through the issues Amy is having. Everyone is different and anything is possible. I have not heard of allergies causing high BG's but thats not to say it doesn't happen OR the allegry is causing some secondary issue that is causing the high BG's. A lot of non-diabetes HCP's make assumptions about you when you are a diabetic.Two years ago, I was diagnosed with nephrotic syndrome which is basically an auto-immune issue like allegries and Diabetes. Of course my GP said 'oh you're a diabetic and this must be the cause of your kidney problem'. Fortunately my Diabetes Consultant dismissed this out of hand and said it was definately NOT diabetes. It has since been confirmed its just my immune system in general. During my problems I have had both low and high BG's that are not clearly connected to my diabetes. So find someone who can give you good advice about this, I appreciate you might be constrained to pediatrics, I'm not sure at what age Amy moves to 'general' medicine. It sounds like you are being given generic stock answers rather than necessarily getting to the root of the issue. |
|
Dec 12, 2010
marke
657 posts
|
Topic: General Discussion / Forums Have Gone Quiet As of today there are 263 people registered with the site as HCP's. They may not all be active or logging in all the time and part of the issue is confidentiality. I think its just a culture thing that hopefully will gradually change, the problem is not always the HCP's but the management of the PCT's who have dictated that HCP's should not talk to patients on sites like this in fear of potential legal action. That doesn't stop everyone however and indeed there are some failry senior people within DAFNE posting on this site. I think we just have to give it time and hope that eventually people realise that there need not be huge legal implications with giving general advice to patients via the internet. Lets face it there are plenty of people who are willing to give adive who don't have a clue what they are talking about. I'm not referring to anyone on here or diabetics in general just the internet in general. I have read some seriously dangerous and mis-leading 'medical advice' on the net, its much better to get advice from real medical staff.Still as I say, if we keep plugging away, eventually things will change we just need to wait.... |
|
Nov 30, 2010
marke
657 posts
|
Topic: General Discussion / Advice on Diabetes Doctors Hi, the complete list of DAFNE centres is here . There are a number of london ones in the list, if you email us and tell us which is closest to you we can pass your contact details onto the DAFNE team at that centre via the DAFNE Programme Office. I won't ask you to post any personal information in the forums, this is not facebook :-)You can contact us using the link at the bottom of every page. You do have a choice in which hospital you attend and even which consultant you see. Although obviously sometimes you can end up jumping out of the frying pan into the fire. I am loath to criticise HCP's since many do very long hours and are very dedicated. Unfortunately sometimes their people skills are not all they could be, one once told me I could lose my driving license because I had a few hypo's. The next time I saw my normal consultant as well as reassuring me he promised to have a word with the younger consultant about his 'people' skills. Most are very good, but occasionally like all disciplines there are a few that could improve. |
|
Nov 26, 2010
marke
657 posts
|
Topic: General Discussion / Apologies... trudi, your dafne centre's forum should appear on the forum's page at the bottom. The 'My DAFNE Centre' link is a shortcut to the same place. |
|
Nov 19, 2010
marke
657 posts
|
Topic: Questions ? / Levemir issues Melissa, just email us using the link at the bottom of each page telling us your name and the DAFNE centre you did the course at and we can get you verified as a graduate. The easiest option is to get your centre to give you a code, but if that is not possible then there are other ways !! You will then be able to access the online handbook which we will hopefully be updating soon to the latest version ( when we get sent it). |
|
Nov 17, 2010
marke
657 posts
|
Topic: Questions ? / Levemir issues Sorry to be Mr Pendantic, but exercise can affect your BG for upto 24 hours not 2 hours ! If for example you do exercise in the evening it can still affect your insulin needs the following morning. I know this is true because it used to happen to me a lot when I went to the Gym inthe evenings.... I agree with the rest of the post though :-) |
|
Nov 17, 2010
marke
657 posts
|
Topic: General Discussion / Abusive posting will not be tolerated Further to Simon's message, some Year 11's at a High Wycombe school are in for an unpleasant discussion with their Head Teacher in the near future. So they won't be doing it again and a warning to anyone else who thinks its clever to post abusive/racist comments, we can and will find the cuplrits and ensure they are punished. |
|
Nov 17, 2010
marke
657 posts
|
Topic: General Discussion / Flu jab - just curious I had the Pneumonia jab this year as well and the surgery was suprised I had not had it. yes its supposed to last for life but sometimes apparently you need a 'top' up. Better to have it than not, like the flu jab I beleive it is not a 'live' vaccine. This means it cannot give you pneumonia just as the flu jab cannot give you flu. The only illness you can get from these jabs is a reaction to the suspension ( liquid) used to deliver them. This often contains anegg derived product and thus the potential risk of a reaction. Go get them people its not nice to have Diabetes and flu :-( |
|
Nov 15, 2010
marke
657 posts
|
Topic: General Discussion / help please hi , the DAFNE handbook says here that its 1CP that you should not take QA for. I'm not suggesting that it caused you a problem, I just noticed it and wondered why. Your DAFNE Educator should NOT be telling you to reduce your BI without seeing your BG readings over a number of days and then they should help you work out how to reduce it not just tell you to reduce it without any detail..... |
|
Nov 15, 2010
marke
657 posts
|
Topic: General Discussion / help please Hi, on what basis were you told to reduce your BI ? Did your DAFNE nurse see the results you have show us ? Novarapidboi is correct any change in BI should be given a few days to take effect. If you keep changing up and down on alternate days you won't see the real results.There was only one day (09/11) when you were low in the morning, the rest of the time your BG's seem pretty steady overnight. I notice that a couple of evenings you had CP's before bed but no QA, is there a reason for this ? |
|
Nov 15, 2010
marke
657 posts
|
Topic: Questions ? / Levemir issues Hi Melissa, to get access to the handbook you need to be registered as a graduate. Your DAFNE Centre should be able to give you a code for this and then you just enter it in the settings on the menu bar at the top. If you cannot get a code from your DAFNE Centre then we can get DAFNE Central to verify you as a graduate and then we can change your account to be a graduate. This is necessary because DAFNE Central don't want non-graduates accessing the course handbook and trying a DIY DAFNE Course of their own..... |