Our Type 1 diabetes work

We have received a number of comments on Facebook and some by email following a piece on Daybreak yesterday morning which did not differentiate between Type 1 and Type 2 diabetes when talking about the fact that Type 2 diabetes can be prevented.

Several of you have said that Diabetes UK does nothing for people living with Type 1 diabetes. Here are just some of the day-to-day things we do:

• We invest in research that focuses specifically on Type 1 diabetes to increase understanding of the causes, to improve treatments, and to advance scientific knowledge in newer areas. The breakdown of scientific research we are currently funding, or have committed to fund as of September 2012, is as follows:

Type 1 diabetes – £7,166,447
Research that benefits all types of diabetes – £4,935,261
Type 2 diabetes – £8,585,224

• We hold special events and holidays every year, helping hundreds of children living with Type 1 diabetes and their families to understand and manage their condition better.

• We campaign to improve the lives of children living with Type 1 diabetes, as well as the families who look after them. We launched our children’s and young person’s campaign by raising awareness of the 4 Ts – the main signs and symptoms – of Type 1 diabetes. We sent campaign posters to thousands of GP surgeries across the UK, and we continue to distribute these to healthcare professionals, as well as to local community venues where parents, grandparents and other carers will see them. We undertook a major amount of press work to have the 4 Ts reported in a wide range of publications, including national newspapers like The Times and The Mirror, and specialist publications such as Pulse (for GPs) and Teach Nursery.

• Next week we are launching the second the phase of the campaign – focusing on improving the quality of care that children and young people with Type 1 receive. We want to make parents, young people, healthcare professionals, commissioners and parliamentarians aware of the support that all children and young people who have Type 1 diabetes should be receiving, and to improve access to high quality care so they are better supported through all aspects of managing their diabetes.

• We have worked to influence the government to make sure that people living with Type 1 diabetes have access to testing strips whenever they need them – resulting in the Department of Health sending a letter to GPs, pharmacists and hospital doctors telling them they should not be restricting testing strips.

• We have campaigned effectively in Scotland and England and achieved major improvements in pump services.

• We provide specifically tailored health information on our website and in freely available publications, and we also feature articles about Type 1 in Balance, our regular membership magazine.

And for people living with all types of diabetes, these are just some of things we are doing to improve their lives and the quality and level of care they receive:

• We run a Careline staffed by qualified counsellors who provide information and support to more than 30,000 people living with diabetes every year.

• We campaign to reduce the number of avoidable diabetes-related amputations through our Putting Feet First Campaign.

• We work at a national and local level to influence the government to improve diabetes services and to make sure people with diabetes receive the care they need.

• We hold local and national events for people with diabetes and for the healthcare professionals who are responsible for their care.

Apart from that, we spend an enormous amount of time trying to influence the media to differentiate between Type 1 and Type 2 diabetes. Our Guide for Journalists is just one example of this. To highlight the issues we face when it comes to the media, one health editor said to us recently that he understands the importance of differentiation, but that if you spend your allocated minutes talking about the differences between Type 1 and Type 2 diabetes you won’t have any time to talk about other important diabetes issues – like improving standards of care.

We will continue to do everything we can to support people affected by Type 1 diabetes, and to improve the quality of care received by everyone living with all types of the condition – judge us by what we do.

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  1. Kayleigh Wainwright says

    It is so frustrating when the media gets it wrong – it causes frustration and misconceptions!
    I have had type 1 diabetes for nearly 22 years and Diabetes UK have been with me every sdtep of the way..as a child I attended the children’s holidays which help me to gain independance and I believe these helped me so much growing up. It has also helped me when I felt I couldn’t cope..just knowing there are other people out there who have felt the same way and experience the same things is reassuring. They have and will always continue to fund exciting research, which contributes to the major breakthroughs in being able to manage life with diabetes and prevent dreaded long term complications. When I was first diagnosed I remember my mum using syringes and insulin cartridge..today I live with an insulin pump! Diabetes UK does so much to support people with both Type 1 and Type 2 diabetes :)

  2. Sian says

    I’ve had type one diabetes since i was two year old i am now 18. And the fustration i have is that there are more type two posters, articles etc around. Type one diabetes need to be more public. If i child has diabetes in a school that year the child is in should have a nurse come in and explain to the whole school year what diabetes actually is. i spent years explaining to friends what i have to do if i have a hypo or i am hyper. Friends don’t understand they ask me ‘do you have to inject yourself with insulin if you have a hypo’ people need to be more aware of what diabetes is. Diabetes uk is doing a wonderful job but more needs to be done to get it known to the public. It is a long life thing and its hard to cope with sometimes. The media should get facts and figures right before they make comments about diabetes!

  3. Helen says

    And through this blog site you provide a voice for people living with diabetes. If this was all you saw, you would think Diabetes focus was Type 1: I only remember seeing contributions from Andy discussing Type 2.
    Perhaps the point is that for those of us living with diabetes, either type 1 or 2, our type is the most important type.
    Keep up the good work Diabetes UK.

  4. Julia Roebuck says

    But your campaigning about T1 & T2 differences means nothing when someone from DUK goes on national TV and *doesn’t differentiate*. And no apology for getting it wrong either!

  5. Maria says

    What people don’t understand when they don’t differentiate between the conditions is that it is insulting to us with type 1. People talk about “preventing diabetes”, the “link between obesity and diabetes”, and so on. Then the general public looks at you and thinks you have caused this to yourself, that it is your fault. I have so many times been told “you must have eaten too many sweets as a child then” and “well if you would have eaten healthier you could have escaped having to take injections”. And when you then go on to explain to people that you have type 1 that it has nothing to do with lifestyle or diet, people think you’re just saying it in order to “save face”. The word “diabetes” has become such a dirty word, filled with blame. Speaking to others with type 1 I feel that most of us feel the same.

    I know you already do a lot for people with type 1 and you have shown that with this blog entry. But it would be very helpful if you could do something about this issue. Make people understand how insulting it actually is when people say “you could have done something about it, you brought it on yourself”, when you in fact didn’t. It’s not just about differentiating between the conditions; it’s about making people feel comfortable saying that they have type 1 diabetes.

  6. Sandra says

    Please everyone have a look at this and support the Diabetic Research Institute if possible. The only people who focus their entire research on finding a cure for diabetes types 1 and 2. Thank you.


  7. Katherine says

    Maybe it is time to call Type 1 something different?I have had type 1 for 38 years and people have never really understood it and the difference. Diabetes UK is excellent but all people hear is ‘lifestyle’ and overweight and poor diet. When I was diagnosed at the age of 9 that wasn’t the case!

  8. Jo Whitlow says

    No DUK. When you get something wrong you say sorry and promise to do better next time. My 5 year old knows this – why don’t you? What you don’t do is put out a response that basically says – we do loads for Type 1s so stop complaining. Your investment in research is laudable. No one takes issue with that. But time and again we who live with diabetes are having to pull you up on your very poor media performances. All we are asking is that your Chief Executive and other media spokespeople should be making a priority of
    a) making it clear that T1 is an autoimmune disease which is utterly non-preventable
    b) stop joining in the general media bullying of people with diabetes
    You claim to be the charity for people with diabetes but you are alienating large numbers of them every time you go on TV or issue a press release. Sorry, directly from the person who got it wrong, now please.

  9. Susan Williams says

    Even if you have only two minutes you should clearly state which type of diabetes you are talking about. Lately there have been many articles in the press linking the “rise of diabetes” with lifestyle, sugar consumption and obesity. This fuels ignorance about Type 1 and can lead to feelings of anxiety and embarrassment in Type 1 children in particular; and I say this as a mother of a child with Type 1. It is absolutely vital that Diabetes UK lead the way when it comes to setting an example to other media outlets. There is NO excuse for the sloppiness of Barbara Young, Chief Executive of Diabetes UK, witnessed on Daybreak.

  10. cheryl gauntlett says

    Why does it always seem that DUK miss the point? I do not expect to hear an explanation of the various types of diabetes within every news report/article, but the words ‘type 2’ when that is indeed the type you are talking about is surely a basic fact of the interview. It is bad enough when it is due to poor journalism but when it is the Chief Executive of our leading Diabetes charity it is shameful.

  11. john mcbrien says

    As a parent of a long-term Type 1 sufferer, I cringe every time I hear or read articles which fail to differentiate Type 1 from Type 2 – especially when the person speaking is the so-called supportive expert. You seem to have no idea of the adverse impact this has on the average Type 1 individual, who did nothing to “cause” their disease but is working desperately hard to manage it. It would take only a few seconds to be clear that there are two distinct diseases – and not accept the media’s desire to be over-simplistic. One way, as suggested by others, is to change the name of Type 1 or 2 to something quite distinctive.

  12. debbie rowe says

    Its really simple to say “type 2 diabetes”!!!! Or even “this is type 2 diabetes we are talking about as type 1 diabetes is never preventable, it isn’t going to take long but can make a big difference! We will all still wait for your apology at getting it wrong yet AGAIN!! Shame on you

  13. Jack McBrien says

    Time to have a totally different name for type1 and type2 diabetes. As a type 1 I’m sick of being confused for a type 2 and ‘told’ about cures etc people read about in the media. It’s bad enough having type 1/neuropathic complications without being misinformed by a non educated public because of a single digit in a name that causes mass confusion! Please change the name NHS!!!!

  14. Helen Bailey says

    No one was doubting that you spend money on type 1 diabetes and this sholdn’t turn in to a type 2 is worse than type1 argument. The thrust of our comments were around the fact that the Chief Exec of DUK failed to differentiate between the two types, stated diabetes is preventable and it cuased by lifestyle choices e.g. diet and exercise (or lack of). What we would have expected today was an unreseved apology from her and a promise to get it right in the future. It is ironic that in this repsonse you state:
    ‘Apart from that, we spend an enormous amount of time trying to influence the media to differentiate between Type 1 and Type 2 diabetes. Our Guide for Journalists is just one example of this.’

    This is the very thing which DUK failed to do themselves and which has provoked the outcry. You have done a dis-service to everyone with diabetes, for type 1 by failing to explain that you were talking about type 2 and to type 2s by once again berating them for their lifestyle choices which have caused their diabetes when we know that it is not just lifestyle. DUK seems to be the only charity who tells its supporters it is their own fault, it surprises me that you have any following as I would not want to support someone who was constantly telling me off and telling the world it was my fault (regardless as to whether it was or not).

    The hidden cost to the error yesterday is the ongoing bullying of children, the taunts that they must have eaten too many sweets and the poor parents who attempt to explain that type 1 is an autoimmune condition and there was nothing that could have prevented their chld getting it. You have lost many supporters over the last couple of days, one hopes that in the future you will follow your own press guidelines to prevent a further exodus.

  15. Helen Jackson says

    And all the things listed above, all the good you do is destroyed in the 2 minute tv interview where no distinction is made between types, you jovially suggest we all have salad sandwiches and walk to the park at lunchtime and all will be well. And as for Steve Redgrave having something inbetween type 1 and 2 well that’s news to me! Such a disappointing waste of an opportunity , I fear all you did was subject those children with type 1 to bullying and abuse, I suggest someone else does the media interviews in future

  16. Janet Armer says

    Type 2 accounts for 90-95% of people with diabetes with the other 5-10% for the Type 1’s, MODY, LADA and possible other types. I presume for this reason TV tends to focus on the Type 2 patients. I have had Type 1 since 1979 and now work as a Diabetes Lead Practice Nurse, only today a 17 year old Type 1 patient of mine said his PE teacher was teaching them about healthy lifestyles and exercise in order to stop them getting diabetes. My patient said even his mates accused him of not doing enough exercise and eating sweets. This is so wrong, the Type 1 was not preventable and Type 2 is only in most cases but not all. Diabetes UK you are doing a brilliant job informing people with all types.

  17. Louise Bloxham says

    There are two issues here: 1. many are upset about the fact that Barbara Young didnt say that she was talking about type 2 – you would think after previous dismal performances from duk media spokespeople this would have been a TOP priority? 2. People view DUK as being mainly a charity for Type 2 – we can see from your above post and from the childrens campaign that you are in fact doing lots for T1 – HOWEVER the perception from your supporters otherwise. The horror that was the Daybreak segment along with previous failings to differentiate between types or explain that type 1 is autoimmue is resulting in alienation of your supporters of all types. Many Type 2 supporters must be heartly sick of being told they could have prevented their disease as I believe about one third of those with type 2 are not obese or overweight at diagnosis.
    Barbara Young should make it her urgent business to rectify this situation to make amends to all the children (and adults) with type 1 who feel so very let down.
    I am currently considering cancelling my monthly donation to DUK.

  18. Barbara Fynn says

    I am having trouble accessing the programme – the little I did see explained the concern surrounding this interview – larger than the blog suggests – with the presenters and Barbara talking about ‘fit people’ and ‘diabetes’.
    Guiding my daughter through life with Type 1 since the age of 10 I find it so frustrating that everything is a battle. Adequate school care plans, diabetes clinic services, care when admitted in hospital for a non-Type 1 related emergency operation, exam protocol on and on relentless since the point of diagnosis with it seems a battle for testing strips looming. The very last people I ever expected to challenge and educate are Diabetes Uk – it is vitally important that each type of diabetes is explained with care and attention and understood by the media and audience watching as a condition in its own right. There is no such thing as ‘diabetes’.

  19. Peter Gordon says

    As a father of 2 very fit and healthy boys with Type 1 I share everyones frustration. However we are all guilty to an extent when we say that our kids are diabetic.
    They aren’t, they are Type 1 Diabetic.

    We get lazy and drip the prefix
    We all need to constantly use the Type 1 prefix every time we refer to their medical condition, even if it is the 10th time you have to put it on the same form to the same organisation who already know about their medical condition.

    We should make sure that the word “Diabetic” is never used in isolation in any form, conversation, interview or forum when describing either condition.

  20. Andrew says

    Sometimes we are hardest on our friends and those who we need to work closest with. We can be more unforgiving with them than those remote from us.
    Let’s all remember that while we should hold one another to the highest standards we should also embrace and support everyone trying to improve the lives of people with Diabetes.

  21. David Barron says

    I fully agree that it needs to be made quite clear the difference of T1 and T2.
    My son aged 19 who was diagnosed with type one last year is often in complete denial about telling anyone about his condition.
    Generally the public has very little understanding about diabetes unless they are affected by it. It must always be made clear that the two conditions relate to completely different situations and those that struggle with type 1 need MUCH more support.

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