DAFNE user group first meeting

9 posts, 4 contributors

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marke Site Administrator
South East Kent PCT
659 posts

I am posting this here because we haven't had time to create a specific area on the site for the user group as yet.
As soon as time permits we will have a dedicated area for the DAFNE User Group. Anyway, in the spirit of keeping you all
informed, the minutes of the first meeting of the DAFNE User Action Group (DUAG) are here.
The group is intended to represent YOU and your views (DAFNE Graduates) to the steering groups within the DAFNE Programme.
The minutes give a much better summary of the group and its current state, so I will leave you to read them :-)

LizB DAFNE Graduate
South East Kent PCT
23 posts

Thanks for posting those minutes. It is good to see that this site is part of a properly planned approach to supporting DAFNE graduates and people who might benefit from DAFNE inthe future.

I'm really impressed with the notes and the aims of the DUAG.

Two things leapt out of the paage at me in particular (although it was all good reaading) and they were:
1. why on earth would you/they be considering re-branding something that is incredibly recognisable and (in my area at least) quite newly seeping into the general consciousness. The current brand is bold, distinctive and quite frankly easy to find amongst all the other paper that accumulates! It may just be because of the associated experience of the DAFNE course itself, but I find the DAFNE branding makes me feel very positive and hopeful about my condition.

2. in the section that talked about how the meetings should be run there was reference to some principles that sound familiar - things like listening environment and timed talk and everyone having a chance to have their say. Anyway, if you haven't heard of it, I can thoroughly recommend Time to Think (www.timetothink.com) and Nancy Kline, who is the founder and an inspirational lady.

All the best
Liz

marke Site Administrator
South East Kent PCT
659 posts

I totally agree about the re-branding idea, this has come from somewhere 'inside' the DAFNE programme and the reaction of everyone at the meeting was 'whaaatt!!!'. We are all happy with the current branding and don't see a reason for change. Apparently it gives the wrong message that Diabetics can eat what they like and so will eat too much of the wrong stuff, sigh.
Yes I know how crazy that is but unfortunately all too often the drive and ideas behind 'corporate' branding come from those least in touch with the product. Well thats my personal
view anyway (not necessarily shared by the group).
I will check out the reference in 2, thank you.

John Roscoe DAFNE Graduate
Durham Diabetes Network
14 posts

I probably haven't put this in the right place but I hope someone can answer my question. I attended a DAFNE follow up session in July and at the meeting we were given info about this site and also told about the DAFNE user group. I filled in the paperwork to join the User Group, sent it off but have heard nothing. So what should I expect. Can anyone help.
Thanks.
John

marke Site Administrator
South East Kent PCT
659 posts

john, sorry for the delayed reply even web admins take holidays ! Unfortunately, I suspect the answer currently is not much. The idea behind the User Group form is that it provides DAFNE Central with a database of DAFNE Graduates, until recently this was NOT done and therefore there are 12,000 DAFNE graduates that only the local centres have information about and no permission to share this data. The idea of the User Group is that it will help to shape the future of DAFNE. There will be more information about this in the coming months as the DAFNE User Action Group gets its act together. The DUAG is an elected body of people who will meet regularly to discuss DAFNE issues and will also attend the meetings of the various DAFNE research and executive groups. The DUAG is elected by the User Group and there was a very low turn out in the first election because we cannot contact the 12,000 to get their views and get their votes.
I am a member of the DUAG and DAFNEOnline is seen as one of the key methods of getting information to the User Group. I intend to create a 'User Group' area of this site as soon as time permits it will contain details of what is happening in the group and DAFNE as a whole. Hopefully I will get this done in the not too distant future. I will also check with DAFNE Central if they have any plans to send the User Group any information in the near future.

John Roscoe DAFNE Graduate
Durham Diabetes Network
14 posts

Marke, Thanks for this and I am looking forward to getting more info once you have set up the User Group area. Seems that there is quite a big problem in getting all the DAFNE members coordinated. Best of luck.
John

digth DAFNE Management
DAFNE Central
19 posts

Hi John

I can confirm that your application to join the DAFNE User Group was received and that you are duly a member of the DAFNE User Group.

As we state in the information about DAFNE User Group, Central DAFNE will only contact you if there is a reason; so far this year we have contacted members to:
1. Volunteer to stand for election of DUAG (21 people responded)
2. Send out voting packs for DUAG
3. Announce the outcome of the DUAG elections
4. Send out the minutes from the 2 DUAG meetings
5. To give information about dafneonline
6. To contact Graduates from 2 DAFNE centres that have decided to withdraw their DAFNE services

Contacts 1-3 above would have occurred before you registered with the User Group, but I do hope you received the minutes.

We currently have 527 DAFNE Graduates on the DAFNE User Group database; date around one quarter of the DAFNE User Group have requested that we only contact them by post.

We hope that over the coming weeks as DUAG start to develop that they will provide updates to Central DAFNE to send to the members of the DAFNE User Group; and indeed start to invite the DAFNE User group to become more actively involved in their work streams. It's important to bear in mind that not all members of the DAFNE User Group will be registered with dafneonline, and vice versa, so Central DAFNE and the DUAG will be working together to maximise exposure to the workings of the DUAG using both dafneonline and the DAFNE User Group.

John Roscoe DAFNE Graduate
Durham Diabetes Network
14 posts

Thanks for the info things are becoming clearer now. Last week Claire Swift sent me copies of the minutes of the first two DUAG meetings.
I like the approach that the Awareness Group are taking especially the messages outlined in point 6.2. I think this is a particularly important issue and in my view the group has got this exactly right.
As a point of interest, earlier this year I linked into a Diabetes forum I found on the internet and I tried to encourage folk to attend the DAFNE course if given the opportunity, sadly the feedback I was given was rather discouraging and some people seemed to be rather cynical about DAFNE. Additionally it seemed that in some areas of the country it is called something other than DAFNE which certainly won't help the cause of the DUAG Awareness Group.
Finally on the Involvement Group there is some good stuff going on in the Darlington/Darlington area which may interest you. At least once a year they do a training course for HCP's and one of the things they do is ask about 4 patients to attend and talk to the HCP's. For the last two years they have asked those of us that are DAFNE Graduates to take every possible opportunity to mention DAFNE and its benefits. This has worked really well and there is a great deal of interest from the Doctors and Nurses.
I think I have said enough now. It's all good stuff well done to the group.
John.

marke Site Administrator
South East Kent PCT
659 posts

John, I don't want to name any names or even get territorial/personal but I think I can guess which forum you found, we had a brief flurry with some of their members on this site. Their views do not correspond with ours, I think is the best way of putting it. Everyone is entitled to their own opinions so I won't comment further.

With regard to other names for DAFNE, they are NOT DAFNE courses, they are usually cut down versions to save money. Unfortunately we do not recognise them as DAFNE Courses. Why ? Because one of the things about DAFNE is it is based on a lot of research both here and in the germany and is rigorously controlled to ensure that it is based on the research carried out. There is no evidence to support the cut-down courses and it is not clear if they are as effective as the official DAFNE course.

While I am keen for everyone to get Diabetes Education regardless of the course, I would still prefer it to be the official DAFNE course which I personally know works. This is the standpoint of the people who run the DAFNE Programme as well. Unfortunately some people don't like this approach, but it is what we believe to be the correct approach.

The User Group will be trying in the near future to encourage PCT's to run DAFNE Courses by demonstrating the benefits, one of which is you can have a support website that is both national and international. This is NOT possible if every PCT runs its own 'version' of the course with different course contents.

Thank you very much for trying to promote DAFNE and don't be discouraged. We all know it IS a great course and can make a huge differnence to all Diabetics. If we all keep working at promoting it, eventually we will reach critical mass and more and more PCT's will provide the course. Which is a result that will benefit everyone.