DAFNE - is it worth it!?

[Robynoksana]

Hey all,

I've been referred for DAFNE and I'm due to go on 17th October. I've needed to book a week off work as annual leave to attend, which essentially means that I've used all my holidays now and for the rest of the year can't take any time off so, say I need to attend an appointment or anything I won't be able to until January.

Anyway, I was diagnosed in February and have been carb counting and adjusting my own insulin since. And now, 8 months after the fact, I'm having to go on a course that (from what I've heard) is going to teach me to...carb count and adjust my own insulin. Is there anything more to it at all? Like are they going to teach me things I don't already know?

I've also been told that you're expected to take your insulin in a room with the other attendees..which I can't say I'm overly comfortable with if it's true. Don't really want to be whapping my belly out in a room full of strangers

Any advice would be much appreciated!x

EDIT: I don't know if it's worth mentioning but I was having fortnightly appointments at the diabetes clinic from February until April, then I've sort of been left to my own devices. My consultant hasn't seen me for 6 months and I'm doing okay in the grand scheme of things, some off days but on the whole not bad.

 

[Type1Lad]

Hey all,

I've been referred for DAFNE and I'm due to go on 17th October. I've needed to book a week off work as annual leave to attend, which essentially means that I've used all my holidays now and for the rest of the year can't take any time off so, say I need to attend an appointment or anything I won't be able to until January.

Anyway, I was diagnosed in February and have been carb counting and adjusting my own insulin since. And now, 8 months after the fact, I'm having to go on a course that (from what I've heard) is going to teach me to...carb count and adjust my own insulin. Is there anything more to it at all? Like are they going to teach me things I don't already know?

I've also been told that you're expected to take your insulin in a room with the other attendees..which I can't say I'm overly comfortable with if it's true. Don't really want to be whapping my belly out in a room full of strangers

Any advice would be much appreciated!x

Best decision ever, you don't have to take your insulin in front of other people if you don't want to there will be a room so you can do it in private.

It will teach you so much about sport & diabetes ~ Insulin pumps ~ bolus advisors and many other things. You may already carb count but being with others learning to advance your skills in carb counting is worth it.
Goodluck and keep us informed on how you get on

 

[tim2000s]

@Robynoksana Your employer should give you the time to go on the course outside of your holiday days. Please talk to the hospital offering your course and explain to them the situation. They should be able to provide a letter to your employer so that this can be done.

This is one of the reasonable adjustments that an employer is expected to make under the equality act.

 

[Snapsy]

@Robynoksana although it sounds as it you've already got some carb counting experience under your belt, I can thoroughly recommend doing the course. I did my own area's regional variation on DAFNE 10 years ago and I found it tremendously - what's the word? - empowering!

I'd recommend taking them up on their offer if you can.

 

[Robynoksana]

@Robynoksana Your employer should give you the time to go on the course outside of your holiday days. Please talk to the hospital offering your course and explain to them the situation. They should be able to provide a letter to your employer so that this can be done.

This is one of the reasonable adjustments that an employer is expected to make under the equality act.

Wow I didn't know that! Surely you'd think they would've told me, since I work in a solicitors firm! Haha sneaky yeah I still have the DAFNE letter so I'll take that with me today and see what happens! Thanks so much

 

[Robynoksana]

@Robynoksana although it sounds as it you've already got some carb counting experience under your belt, I can thoroughly recommend doing the course. I did my own area's regional variation on DAFNE 10 years ago and I found it tremendously - what's the word? - empowering!

I'd recommend taking them up on their offer if you can.

Yeah I've accepted my place and everything it's just people have told me it's just about how to carb count, and I can already do that. Now it seems there are other areas of discussion so will still go x

 

[Robynoksana]

Best decision ever, you don't have to take your insulin in front of other people if you don't want to there will be a room so you can do it in private.

It will teach you so much about sport & diabetes ~ Insulin pumps ~ bolus advisors and many other things. You may already carb count but being with others learning to advance your skills in carb counting is worth it.
Goodluck and keep us informed on how you get on

Wow I didn't realise that, I've previously been told it was jus about leaning to carb count - if there are other areas of discussion 100% I'll still go! Thanks so much I'll keep people updated!!x

 

[Snapsy]

I've just been invited to a day-long refresher course - I'm frustrated that I'm not able to go due to another not-get-outable-of commitment.

I'm sure various guidelines will have changed in the time since I did the original course, so I might have to do my own online reminder course or something!

Access to information is so crucial. I'm lucky that my hospital is pretty driven in this respect.

 

[becca59]

I did the DAFNE course in June, nearly 3 years after diagnosis. It was brilliant! So much more than carb counting. After the first day all of us taking part were excited about attending day 2. At the end we all felt it should be compulsory to attend within a few weeks of diagnosis. In a way our part of the bargain for our free NHS prescriptions and on going expensive treatment, to ensure we stay as healthy as is possible.

 

[Juicyj]

Yes definitely go - it's an empowering course, gives you more confidence in making decisions and knowing what to look for when analysing patterns, also good opportunity to make type 1 friends, I thought my course was excellent, yes it was a nightmare to get time off work but it's a course that will stay with you for life, so worth it

 

[therower]

Hi @Robynoksana . I did Dafne last year 25 yrs after initial diagnosis. I was surprised to learn so much over the course of the week and it was also great sharing experiences with fellow T1's.
I think the advice concerning you having to take time off work should help you get something sorted.
At no point during my course was anyone asked to do anything they felt uncomfortable with.
As for injections, we only injected at meal times, meal times were in the hospital restaurant, so it basically became a meal out. Some people injected in the toilet, some discreetly at the table and some openly at the table. Everyone understands everyone else's issues, you may be surprised how others deal with being diabetic.
Hope you have a great time.

 

[noblehead]

I've also been told that you're expected to take your insulin in a room with the other attendees..which I can't say I'm overly comfortable with if it's true. Don't really want to be whapping my belly out in a room full of strangers

No you don't have to inject in front of others if your not comfortable doing so

The course starts around 9am and lunch is at 12, you leave the room and can go where you like to eat & inject, usually the course finishes around 4pm so your back in good time for your evening meal so injecting in the room isn't necessary.

Like are they going to teach me things I don't already know?

Perhaps you may not learn something new, depends on your knowledge now. On the course they also discuss basal adjustments, Sick Day Rules, exercising (and insulin adjustment) to name but a few, much of this can be found on the net (on-line training courses) but there something good about sitting in a room with people who share the same condition and have the same trials & tribulations as you do yourself.

I enjoyed it and thought it was a worthwhile.

 

[Type1Lad]

+ if you want to further manage your condition on an insulin pump one of guidelines is you must have compleated an educational course =P

 

[Sweetheart66]

I went on a one day course taken from the DAPNE course. My new hospital would like me to attend the course they do too but my employer insists I use annual leave for all my appointments! I attend another hospital for Rheumatoid Arthritis and biological clinic check ups so literally only have 1 day left until April next year! Im actually a registered nurse in a hospital too. I think if they insist on the course I will have to contact the RCN (union). The other option work have given me is unpaid leave!

 

[Robynoksana]

I went on a one day course taken from the DAPNE course. My new hospital would like me to attend the course they do too but my employer insists I use annual leave for all my appointments! I attend another hospital for Rheumatoid Arthritis and biological clinic check ups so literally only have 1 day left until April next year! Im actually a registered nurse in a hospital too. I think if they insist on the course I will have to contact the RCN (union). The other option work have given me is unpaid leave!

It sucks doesn't it Sweetheart66!

I work in a solicitors firm as a litigation executive and an email was sent around not long ago about time off for appointments to the effect of "do not ask for unpaid leave. The answer is NO. Do not ask to take an hour out and make up the time, the answer is NO." And so on and so forth.

Needless to say, it put the fear of God into me because as I say, taking time off for the DAFNE course has left me with half a day's holiday left.

Thankfully, I put it out there to my manager today because I know for a fact I need to attend a follow up appointment from DAFNE in 6 weeks, and I'm due my next round of blood tests in December and she said she'll speak to the managing director about it and see what she can do given the circumstances.

Have you tried talking to someone high up and just being frank about it?x

 

[Robynoksana]

+ if you want to further manage your condition on an insulin pump one of guidelines is you must have compleated an educational course =P

Oh I didn't know that! I like the idea of an insulin pump, but I don't know how manageable or practical they are...do you have one?

 

[Robynoksana]

No you don't have to inject in front of others if your not comfortable doing so

The course starts around 9am and lunch is at 12, you leave the room and can go where you like to eat & inject, usually the course finishes around 4pm so your back in good time for your evening meal so injecting in the room isn't necessary.



Perhaps you may not learn something new, depends on your knowledge now. On the course they also discuss basal adjustments, Sick Day Rules, exercising (and insulin adjustment) to name but a few, much of this can be found on the net (on-line training courses) but there something good about sitting in a room with people who share the same condition and have the same trials & tribulations as you do yourself.

I enjoyed it and thought it was a worthwhile.

Oh thank goddess! Thank you you've really put my mind at ease! Was terrified thinking I'd have to pull out my pale belly covered in injection site bruises (I bruise super easily!) in a room full of strangers!! Haha couldn't think of anything worse.

And it would be helpful to meet people living with the condition, that's why I love this forum so much. I only know 1 person with type 1 and she's had it since being about 4 so it's a non issue for her, like she's never experienced the complete bewilderment I'm experiencing because it's second nature now haha

 

[Robynoksana]

Hi @Robynoksana . I did Dafne last year 25 yrs after initial diagnosis. I was surprised to learn so much over the course of the week and it was also great sharing experiences with fellow T1's.
I think the advice concerning you having to take time off work should help you get something sorted.
At no point during my course was anyone asked to do anything they felt uncomfortable with.
As for injections, we only injected at meal times, meal times were in the hospital restaurant, so it basically became a meal out. Some people injected in the toilet, some discreetly at the table and some openly at the table. Everyone understands everyone else's issues, you may be surprised how others deal with being diabetic.
Hope you have a great time.

Thank you honestly that makes me feel a bunch better. I'm excited about meeting people with the condition I was mainly worried about the belly thing

 

[Sweetheart66]

I sent an email to the Matron and got a quoted paragraph from our Managing Attendance Policy which wasnt much help. Last year she allowed me to dip into this years annual leave, which left me with even less leave for this year! Apparently it states in a document for those with disabilities that we are allowed leave for appointments but it doesn't state if it should be paid or unpaid. The NHS has decided it should be unpaid.

 

[noblehead]

Oh thank goddess! Thank you you've really put my mind at ease! Was terrified thinking I'd have to pull out my pale belly covered in injection site bruises (I bruise super easily!) in a room full of strangers!! Haha couldn't think of anything worse.

And it would be helpful to meet people living with the condition, that's why I love this forum so much. I only know 1 person with type 1 and she's had it since being about 4 so it's a non issue for her, like she's never experienced the complete bewilderment I'm experiencing because it's second nature now haha

No one in the room would bat an eyelid at you injecting or notice your bruised belly, we all bruise occasionally and it comes with the territory when injecting insulin.

Regards to meeting people with type 1, some of the members here meet-up a few times a year for a chat and a drink, I'm sure you'd be more than welcome to pop along and meet them if this is something you'd be interested in, tagging @ewelina @Type1Bri @robert72 who organise and are regular attendees at the meet-ups.