I'm taking this step because of issues raised by several posters on Twitter via the 'diabetes online community' or #doc about the work of Diabetes UK and the recognition of the work of the charity by people who don't have diabetes.
The conception among some is that although 'they' know about Diabetes UK they struggle to see its relevance, feel that its well known in society or feel appreciation for their work.
In some of the posts on Twitter I feel this can be because the comment posters are relatively newly diagnosed and maybe there is still a degree of hurt and resentment that they now have this condition called diabetes; their newness perhaps is clouding them from what Diabetes UK has done for people with diabetes, so my challenge to people is ask yourselves the questions I pose below and replace my answers with your own thoughts -
(i) What did you know about diabetes before you were diagnosed?
I personally can say I knew nothing, ok I knew the stereo-type misconceptions 'oh that's from eating too many sweets', but the reality is I knew nothing and didn't care. There are a lot of comments from posters, again in the #doc, about Type Zero, I might blog about my annoyance at some of the comments posted surrounding that issue in another post.
(ii) What did you know about Diabetes UK before you were diagnosed?
I will draw on my statement from above - I knew nothing, I probably would have seen someone standing raising money, but the reality is I wouldn't have cared who they were, they couldn't do anything for me, but I might have thrown a pound in their bucket just out of the spirit of being charitable.
(iii) What has been your involvement with Diabetes UK post diagnosis?
My involvement started of with simply being a member of the charity, at the time it was still the British Diabetic Association, my relationship with the charity boiled down to receiving correspondence from them about campaigns and getting the Balance magazine, I now had a condition and was now happy to know there was an organisation that was fighting on my behalf, but I wasn't interested in much more than that.
As the years have gone I have become much more involved, I now help to run a support group in my local area, I fund-raise and I campaign on behalf of Diabetes UK and diabetes issues locally, and just recently I became a member of the Council of People Living with Diabetes, a governance council within Diabetes UK designed to ensure that the views of those with diabetes are heard by the charity and are central to their work.
(iv) What has Diabetes UK done for us and what are they doing now?
Quite a wide ranging question and one that maybe Diabetes UK themselves need to consider but I will point out the things I have noticed
- Careline - A communication tool for people with diabetes to talk to a real person about concerns they have;
- Voluntary Support Groups - A tool for getting together with people going through the same thing as you, talking issues with someone else who has similar experiences can be a very therapeutic thing;
- Children & Family Support Camps - A vital tool in helping children and families come to terms with what is, and lets not deny it, a life altering condition;
- Raising Awareness - The Measure-Up and 4T's campaigns have got media attention - as diabetics we need to help by promoting these campaigns and taking them to the masses - we follow famous people on Twitter - make use of it - other charities are RT'd all the time;
- Research - Diabetes UK is currently funds of and has funded in the past research into the cause and the search for a cure - without this research we could still be in the dark about so much, we still are, but Diabetes UK is shining a light into that darkness;
- Campaigning - There are too many to list seperately, but people need to give some consideration to what they have access to now and think, how did this come about? A lot of it came about because of the work of Diabetes UK - access to choice of insulin, access to disposable syringes and needles, access to test strips, access to a driving license (although I know this has become an issue - but Diabetes UK in fighting on our behalf)
I had absolutely no idea about diabetes or Diabetes UK before dx. About 10 years earlier I had someone in my team that had type 1 but other than "call an ambulance" they didn't want to discuss it. After dx Diabetes UK material was really useful to me. It allowed me to get my bearings. They definitely do good work! Ask not what Diabetes UK can do for you but what you can do for Diabetes UK.
ReplyDeleteDiabetes Uk also do an amazing amount to support clinical research into various aspects of Diabetes - this matters to me - I want children who find they have diabetes today to have the chance of better treatments or even a cure. If diabetes Uk hadnt invested in this way my care would look very different. I wouldnt want it to look like it did in 1979.
ReplyDeleteThey also provide great information for newly diagnosed patients - their site is the first place I would direct patients as a nurse. OK - they dont cater for those people who want more detailed and complex information but they have to decide what is most important and do that!
They also tirelessly lobby and run campaigns.
I have been a member for a long time - I'm no newbie (33 years T1) and I'm a DUK supporter!
Thanks for the blog.
Anne
They are good and they definitely aren't idle, they work hard with the charity's money. I would like to see them do more for Type 1s, I feel there is an uneven split between work for T1s and T2s. You could argue that there are many more T2s than T1s to look out for but as the membership is 50/50 perhaps they cld split the resource that way too.
ReplyDelete@ladykatew
I deffinetly think there are feelings of hurt towards DiabetesUK from many diabetics, feelings that they are not doing enough but what they do is hardly easy.
ReplyDeleteI think your questions are interesting and will take up your challenge. I feel I appreciate what they do but this sort of question format might help some of my friends realise too. Might even lead to more support, who knows.