Saturday, 24 December 2011

Minutes From The Meeting With Diabetes UK

It was good to meet with you all last Friday. I thought before Christmas hits us all, I should put down what I think came out of the meeting that we can work together on to take forward. Angela – I don’t have email addresses handy for everyone who attended. Could you forward this but also let me have them so I can communicate direct. (I will do this early in the New Year)

1. We touched on the issue of the mailings about night-time hypos and deaths. I apologised for the appeal mailing which was in poor taste, particularly at this time of year and was at odds with our evidence based position. You have already seen, I think, the statement we put out on this on our web site. We have put in place a system for making sure we don’t put out conflicting positions in future and to check for acceptability of mailings. (For me this is a discussion that could take days!!)

2. Diabetes UK very much recognises the need to be clear about differentiating between Type 1 and Type 2 diabetes in everything we say and what we do. Louise is already working hard on this. The website now has clear Type 1 and Type 2 signposts on the home page, and we are doing more to differentiate and provide good navigation to specific Type 1 information in the revamp of the website which will take place on a rolling basis in 2012. We are involving parents of Type 1 children in this. But I have asked Louise to come back to me with a plan for next year on how we can specifically tell people more about what Diabetes UK is doing on Type 1 issues and support.

ACTION: Louise

3. We talked about how to get better public communication of Type 1 diabetes. We will do a guide for journalists so that they can more easily understand where they are getting it wrong and how to get it right. We continue to wrestle with the real dilemma of how to communicate distinctively and effectively to help tackle the rise of Type 2 diabetes (which we must do) without the public and others lumping Type 1 and Type 2 together. I believe that we have a real opportunity to put countervailing clear messages about Type 1 as part of the major Children’s campaign which we will begin to plan after the break and which is scheduled for autumn 2012 (it will take till then to really plan an effective campaign with proper resources behind it). We would very much like to work with you and other active parents on the planning and the doing of the campaign. We would like to start with identifying what the objectives of the campaign should be. What issues should we try to crack as part of the campaign. We will need to prioritise and focus if we are to be effective. If symptom recognition and early diagnosis is part of the campaign, we ought to make sure your materials and ours support each other. You kindly said you would put us in contact with others of your “amazing parents” who could help us with the planning of the campaign and we would be grateful for that.


Meantime, Louise has been in touch about the “viral video” which we look forward to working with you and JDRF to promote wider awareness early next year.

ACTION: Louise Ansari/Angela

4. You were keen that we do a guide to what parent and people with Type 1 diabetes should have a right to expect and we will look at that. It would be useful if you could outline for us what key issues people most raise with you and we will pool them with the ones they raise with us so that we can best meet the real issues parents and people with Type 1 are struggling with.

ACTION: DUK and Angela

5. We were pleased to hear about your parents network event on March 17 and would really like to be involved in it. How can we take this forward?

ACTION: Angela

6. I am inquiring about our apparent reluctance for people to work with JDRF and we will clarify our policy internally and come back to you. We are committed to working well with JDRF and need to be clear about what that means. We are in fact already working with JDRF on several areas.

ACTION: Barbara

7. Diabetics with Eating Disorders – I am going back to Jacq separately and will copy you in.

ACTION: Barbara

8. We agreed we would signpost to Diabetes Power for pump issues raised with Diabetes UK relating to children and parents as well as to INPUT. ACTION: Libby

9. I was disappointed that Adopt a Project wasn’t very visible to you. It is flagged on the website. We are planning to provide an Adopt a Project list for all our work which we are seeking support for, not just research, and we will make sure that both are properly promoted.

ACTION: Diabetes UK

I will make contact with you after the break to update you on how we are getting on with our actions. I hope we have been able to convince you that we are serious about Type 1 diabetes and how we can best work with parents and people with Type 1 diabetes. I really look forward to working with you all.

All questions were discussed at the meeting in general as they seem to be constant issue's ie: schools, access to pumps, education, GP's services and many more. I will forward Barbara email addresses early in the New Year if you would like a more "personal response". Barbara is more than happy to do this

Best wishes for Christmas.


Barbara Young

Chief Executive

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