[niamh.brady]

Originally Posted by graflynn

I'm excited for you too! I'd give a lot to be going on a DAFNE - aaahh it's the simple things in life that us diabetics want

I'm trying to campaign for DAFNE to be adapted in Limerick but with cutbacks in the HSE, it's difficult. I think there should be a similar programme in every clinic in the country not just the chosen few.

A huge step in this campaign would be if more people with diabetes knew about these programmes and started asking for them - power to the people and all that. If you could, I know this might be impossible but, if you could post a day by day account of what you learned on the course, it might encourage more people to get in on the action.

BTW are you from the Clare side of Galway or the other? I live in Clare!

I'm living in Ennis. Had attended Ennis and Limerick clinics but was advised by so many people (within the hospitals) to move to the clinic in Galway that I got myself referred. Before moving to Clare I attended St James' and all 4 hospitals have been so different. Some really showed very little worry about potential side effects and high hba1c's. Galway is brilliant.

I do agree though that the course should be everywhere but I think there is a lot of staff training involved and of course the people need to want to teach the course. With so many short-staffed clinics these days its no wonder they haven't gotten any further in adding any more DAFNE centres.

I won't have my laptop with me the week of the course - I'm staying with family in Galway as the commute on race week would be crazy, but I will post the weekend after to give summaries on what we did each day.

[tbh]

that'd be great if you could Niamh, thanks. Don't worry if you can't tho. I've been waiting about 18 months for this, dying to hear what's involved.

[graflynn]

Originally Posted by niamh.brady

I'm living in Ennis.

NO WAY!!!! I live on the Tulla Road, next to the Roslevan Shopping Centre. Small World!

hi niamh.
i am not diabetic but my boyfriend is. i am not used to all of this diabetes and he suffers alot of hypoglycaemic attacks. getting worse every time. it really scares me. he does not control it enough and is always going low alot of the time it is during the night and he does not wake in the mornings. i find it very hard to deal with. do u think he will beneift from that dafne course. who do i contact in order to get him onto a cancellation list. please help. thank you

[tbh]

is your boyfriend newly diagnosed?

[niamh.brady]

Originally Posted by unregistered

hi niamh.
i am not diabetic but my boyfriend is. i am not used to all of this diabetes and he suffers alot of hypoglycaemic attacks. getting worse every time. it really scares me. he does not control it enough and is always going low alot of the time it is during the night and he does not wake in the mornings. i find it very hard to deal with. do u think he will beneift from that dafne course. who do i contact in order to get him onto a cancellation list. please help. thank you

Hi there - if the course is on in the hospital that your boyfriend attends, he should just need to ask his consultant - otherwise he would need to get referred to a hospital that does the course by his GP.

I know the DAFNE course is especially good at reducinig blood sugars but the principles should work to stabilise sugars whether teh person ahs constantly low or high sugar levels.

I really think that your boyfriend should contact his doctor or diabetic clinic asap. Every diabetic is on a completely different insulin regime and it sounds like his needs to be altered. Hypos are caused most often by too much insulin for what the person is eating, or taking vigorous exercise without adjusting your insulin.

If he is newly diagnosed he could be in a "honeymoon stage" where he will require less insulin for a while.

It must be very frightening for you when its hard to wake him. I hope that he listens to your concerns and gets himself checked out asap.

[niamh.brady]

Hi guys - I'm back from DAFNE.

As excited as I was before the course, I am so much more excited now.

The course is intensive but so impressive - but you need to trust the method. It will take me a few days to let everything sink in before I can post all details, but I've a wee overview below.

The most important thing that you will learn in DAFNE is what your long-acting inslulin should really be. Mine was constantly being increased at appointments - most recently up to 50 units Levemir per day (20:30 ratio). I am now on 24 units of Lantus once a day. And you'd think that by dropping my long-acting by over half that I'd need to increase my novorapid at meals but it has been at most the same. What I realised (as did nearly everyone on the course) is that I was eating to keep my Levemir from constantly reducing my sugar levels. Now I can really eat as much or as little as I want - no foods banned, no eating at certain times - I can not eat if I want. Once your background (long acting) insulin is sorted you can do anything.

Second most important was carb counting. As previous posters have said, 10g carb is usally 1 unit insulin. In DAFNE every 10g carb (total carb not total sugars on labels) is one CP (carbohydrate portion). Everyone starts on a 1 CP:1 unit Novorapid or other quick acting insulin). I'm pretty much good on 1:1 - others are on 1.5 or 2 or even 0.5 to 1 - its very individual and all about looking for patterns (yes - diaries really are essential) and noticing what time fo day you need more insulin. Carb free meals (steak and salad/veg etc) mean no insuline needed - woohoo!!!!

All week you keep looking at your own and the group's sugar levels and suggesting changes on that. A couple of 3am blood sugar tests too (if you check your sugars at 3am and then again at 8am and they are pretty much the same - plus or minus 1.5, then your background insulin is spot on as it is not "dragging you down" overnight - if it drops too much you need less - if it goes up, you need more and so on.

Dealing with and preventing hypos and hypers are discussed as is the subject of alcohol as most people hospitalised with hypos are as a result of alcohol. Healthy eating is discussed but only briefly as it is more a course on showing you how to live a "normal" life and so you make your own decisions on what types you eat.

That's it for now. It's an amazing course so I advise you all to harass your GPs or specialists to get you referred.

P.S. Young and older on course - length of time with diabetes varied from 3 to 36 years and everyone learnt a huge amount so no excuses for anyone!!

[graflynn]

For anyone who wants more information on DAFNE there is an official UK website (www.dafne.co.uk) and it lists the 5 centres in Ireland that provide it.

St. Colmciles, St. Vincents, & Beaumont in Dublin
St. Luke's, Kilkenny
and University College Hospital in Galway

In my opinion anyone diagnosed with type 1 should have it available to them but hey, this is Ireland!

[FluffyCat]

My dad did that course and he it was the biggest waste of time ever!! He was told nothing he already knew. And the promised follow up never happened. Word of warning. As he did the course he was knocked off his consultants list and didnt see him for bout 2 yrs. It took a lot of phone calls and complaints to get back on his list.
Its up to you if ya wanna do the course but everyone who did it with my dad only had problems eg all were taken off the consultants lists

[To_be_confirmed]

It does strike me as a carb counting course, along with making sure the basal dose of insulin is right. Nothing more than that. I think if a consultant refers someone to it, they'll get something out of it, but this stuff does sound pretty similar to the advice I already get! If you have a dietician who'll help you to properly judge and find out carb content, that's half the battle.

[niamh.brady]

Hi guys,

Just a few more details for you. I have a follow up in a week with the DAFNE team and then my next consultant appointment in October - every appointment will be with a DAFNE educated consultant so that they don't "undo" all the hard work.

I used to think that it could be a waste of time - nothing that I couldn't learn myself but I've been carb counting for 6 months prior to this and you get nowhere near the same effect. Not 1 single person in my whole group was on anything near the correct basal dose to start with, despite us all having it regularly adjusted (upwards) in all cases. The carb counting is really only secondary to getting everything else right and it is extremely rare that any consultant has enough time on a clinic visit or even a private appointment to get the doses bang on - plus you have to wait until your next appointment to see if it works and then adjust accordingly.

I had more adjustments in 3 days than ever before. There were people who have had diabetes for 26 and 36 years there and they found huge improvements almost immediately.

Think about it this way, if you just do the carb counting and presume that you have the basal dose right (because that's what you were put on) it will work well, but, you could be just like I was - eating to prevent hypos and constantly correcting with QA insulin.

It has taken any remotely small amounts of stress that I had as a diabetic. Eating out, going out for drinks, not eating doesn't effect me now. Even on a day where I am not being very watchful of my eating, the top of my range is still only single figures. I now know a lot more of the science behind the insulins and have stopped over-checking my bloods between meals when I know that insulin is still working in my system.

Don't get me wrong guys, it was hard work - and that's excluding the commuting up and down to Galway from Ennis on race-week. You have to put a lot of energy in, open your mind to some dramatic changes and trust in the system. If you don't, you'll get nothing out of it. You really do need the medical supervision to make such changes so quickly, otherwise you are back to one change every time you visit your doctor and it takes years to get the results.

We were such a mixed group, age-wise and personality-wise, so I think we'd quite a representative group of the population. But anyway guys, the course isn't forced on anyone so the fewer people who want to do it, the shorter the wait list. Pluses all around!!

[To_be_confirmed]

Out of curiousity, what basal insulin were ye on? Did you all have the same insulin for that, or were some people on Lantus or Levemir etc?

There are values given for what the basal insulin dose should be, based on weight etc. But any endocrinologist should have dealt with that.

Are there any issues with going on a DAFNE course, if your regular consultant isn't DAFNE trained?? Like the user "FluffyCat"'s dad.

[niamh.brady]

Originally Posted by To_be_confirmed

Out of curiousity, what basal insulin were ye on? Did you all have the same insulin for that, or were some people on Lantus or Levemir etc?

There are values given for what the basal insulin dose should be, based on weight etc. But any endocrinologist should have dealt with that.

Are there any issues with going on a DAFNE course, if your regular consultant isn't DAFNE trained?? Like the user "FluffyCat"'s dad.

Hi to be confirmed,

I was on 20 units Levemir in am and 30 at night. I'm now on 24 units Lantus (first tried 10 and 15u levemir but now one injection works for me - i love Lantus) and i think, based on my current figures that I may need to drop it by another 2 units. I've seen 3 endos prior to this and they just kept upping my doses (it was 70 at one stage) - you can imagine my hypos and hypers when i now know that 24 is more than enough. I've also finally managed to drop a bit of weight and was advised that this would happen when lowering the basal doses.

Everyone on our course bar one attends UCHG where there are a couple of DAFNE trained docs (as well as nurses etc). The girl who wasn't is thinking of moving her clinic there or to a different hospital nearer her college that does it. I don't think anyone who can't access a DAFNE team (at least once per year) should do it as it's a completely different system and even adjustments are done differently. It teaches you a lot more about doing it yourself though, so I'm sure given a bit of practice and a few appointments with a DAFNE team you'd be grand. We questioned this ourselves and were told that, say you go to another doc and he wants to up your basal or change your QA ratio, you should listen but also advise them on what you've been shown in DAFNE and give your own opinions based on any trends in your diary. I know personally that I would be very nervous about questioning a consultant though so I think I will just keep up with UCHG. The team are wonderful and it takes about 2.5 hours round-trip per visit drive-time plus a couple of hours for the clinics.

I have felt so much more relaxed and confident since moving to UCHG and the DAFNE course just reinforced that.

I'm with graflynn though that everyone should have easy access to the programme AND follow-up appointments. Then everyone could make the decision on whether it'll work for them or not. To me, it was the best use of a week's holiday since learning to ski.

I completed the DAFNE course in UCHG 3 years ago.

Since then, my lifestuyle has changed, my eating habits have changed, I lost 15 kg and my Hba1c went from 9ish to 6.7 last week.

I'd recommend it without hesitation to all type 1 diabetics

[kowloon]

There's a waiting list of a year for it where I am in the UK, I'm not sure it would be any use for me anyway seeing as I can't even manage to keep my insulin and eating at regular hours, let alone count it all up in an ordered manner.