- This topic has 23 replies, 9 voices, and was last updated 12 years, 8 months ago by
.
-
Posts
-
-
Perhaps inexplicably, Barbara Young – Chief Exec of Diabetes UK (http://www.diabetes.org.uk/About_us/How-we-are-governed/Executive-team/Barbara-Young/) has agreed to be interviewed by your soaraway Shoot Up.
So submit your questions below and we’ll put them to Barbara once we have some good ones.
-
-
-
-
-
What do you think of the “crowd sourcing” approach to research funding taken by JDRF in the USA:
“JDRF announced a 0,000 Challenge calling for innovative ways to approach the discovery and development of a glucose-responsive insulin drug as a means to treat insulin-dependent diabetes. The challenge is open to the public.” http://asweetlife.org/a-sweet-life-staff/in-the-news/drugs-treatment/jdrf-announces-100000-challenge-for-the-development-of-glucose-responsive-insulin/19616/Is this innovative approach to answering key research questions something DUK will be looking at in the near future?
-
-
What exactly are you: Barbra Young doing to make diabetes aware to those who do not have the condition, to normalize the condition and to make it socially acceptable. To get organisations to understand the need for breaks for those who have diabetes and to get Britain to incorporate diabetes just like race for life?
-
-
-
Why is there such a huge gap in the age range the DUK publications are aimed at? There’s lots of great stuff for children and teenagers and then nothing until you reach Balance, which caters for a much older market. Why are pre-retirement age adults ignored so completely?
-
Why does DUK fail to give people with type 1 full details of the risks associated with nocturnal hypoglycaemia? In a recent issue of Balance magazine it stated that children ‘usually’ wake when hypo when we know they don’t and in a subsequent magazine it was talking about the closed loop, why would we need the closed loop if everyone woke up? I can understand not frightening people but you are supposed to be ‘the’ charity for people with diabetes (regardless of type) and yet you fail to give give good factual information. I also find that you trivialise diabetes in children and make it seem as though it can be easily managed, how are you going to ensure that your website reflects the complexities of dealing with type 1 and gives good up to date advice?
-
Hi @helvelyn – welcome to Shoot Up and thanks for your question – I see you’re going for the full-Paxman there, no nice warm up questions
-
err didn’t see the point…we never get sensible answer on their fb page, so might as well go to the top LOL
-
@helvelyn Ah, you take the Finney approach to diabetes care, if you’re not getting the service you need, head straight for the chief exec, welcome to ShootUp!
-
thank you, I’m on the Children with Diabetes mailing list and we don’t take any nonsense, people with type1 deserve better care, so we have to keep fighting and it would be good if DUK could help us with this…..
-
CAn you please explain what is happening with The Childrens’ Charter? I understand that it is being used ‘for another piece of work’. Well that is not acceptable. My son, and many other children I am sure, pushed himself to speak to an assembly of parents and children to get over 100 signatures. To be told that it is being shelved?!!
You cannot use this ‘for another piece of work’. Those signatures were asked for and given in good faith. You should return them if they are not to be used.
More importantly how on earth do you expect to have a good relationship with children with Type 1 when you let them down like this?
I know it wasn’t going to bring in any money, so not a priority, but I find it deceitful to start a campaign encouraging children to put their head above the parapets and then disregard it.
Marie. -
Please would the DUK Chief Executive explain why it is acceptable to use the scenario of a child dying in the night for a fund raising appeal but still say:
‘We are very sorry and apologise for any upset or distress that our recent mailing may have caused. We understand this is a very sensitive issue that is of great concern to many parents and children with diabetes.
We understand why this appeal appears to contradict our position on night time hypos in children. However we can confirm that our stance on this subject has not changed.
Although night time hypos can be a frequent occurrence, the risks of a child dying from a night time hypo are small. This is a position which is supported by paediatric diabetes specialists. Due to the small number of cases, we do not highlight this issue in our healthcare information or other communication channels with our supporters in order not to cause unnecessary distress. We believe this subject is best discussed with your healthcare professional on a one to one basis or with the Diabetes UK Careline where our trained counsellors can offer appropriate advice.’
We apologise for causing any distress by using this message as a fundraising tool and we will revisit how we approach this sensitive subject in the future.
It may not be a pleasant truth but surely parents have the right to know that facts about nocturnal hypos and surely it is your job as “The Charity for people with Diabetes’ to provide accurate information.
I applaud your attempts to get the message out that diabetes is a very serious condition but to then back track on your fb page is not acceptable and makes your begging letters seem rather tainted
-
-
-
-
-
Hi Barbara, If we (a few friends from SUorPU) went out for a meal could you accurately estimate what insulin dose we would require? If not, why not ? Do you think you would have a better understanding of us Diab’s if you understood ratio’s of insulin to carb counts?
Have you every been attached to a pump? Would you be up to trying out a pump or having 4 stabs a day for a week ? How do you think your fingers would feel after 4-6 finger pricks of testing a day for a week?
Do you think you could cope with all the inaccurate information which is circulated almost every day by the press about a condition which you have no choice in and very little control over? How do you think you would feel after a very low blood sugar whereby you actually made a fool of yourself?
I’m sure you could add some more Tim!
-
-
- You must be logged in to reply to this topic.