Ask Diabetes UK!

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DeusXM said:
Thanks @Hannah M - that's definitely helped me clarify why this isn't like the needle situation 20 years ago if Abbott are purposefully keeping things as online sales only. I was under the assumption that Abbott would have wanted to be on the NICE list but that's helped clarify things. Also that suggests we shouldn't be berating the NHS/NICE over this, but Abbott!

I know you're also working on the other questions at the moment but I also saw this:

http://www.dailymail.co.uk/news/art...rolling-condition-diet-low-carbohydrates.html

I know this isn't a scientifically valid trial and numbers can be quibbled, but what is Diabetes UK's official response to 80,000 people doing the opposite of the official diet advice for T2s, and getting better results?
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That's a combination int it? .co.uk and the Daily Fail. 🙄
 
trophywench said:
It would be lovely if it could be on prescription and therefore free where we get free ones - but maybe there's another way of going about it for GPs and hospital clinics ? - like give them one, which they could loan out to selected patients, with the first two sensors. Or even just ONE. This could whet someones interest sufficiently to encourage them to invest. Must admit - I could afford one, not full time because I don't consider it as an essential - but maybe it would help me see some of the things my BG no doubt does that I never see, which I could then try to iron out. Of course, to see if I'd been successful doing that - I'd need to invest - but then it would be my reason which would seem more attractive than 'just send us your dosh and see if it's any use to you after you get it!'
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Yes, that's a really good point. I'm not sure if GPs are able to get hold of the equipment in order to loan it but it certainly would be helpful to allow individuals to try the device first to see if its something that would be beneficial in managing their own diabetes. I will pass you suggestion on to those who are involved in getting these technologies available on prescription. Thank you Jenny!
 
Hannah M said:
Yes, that's a really good point. I'm not sure if GPs are able to get hold of the equipment in order to loan it but it certainly would be helpful to allow individuals to try the device first to see if its something that would be beneficial in managing their own diabetes. I will pass you suggestion on to those who are involved in getting these technologies available on prescription. Thank you Jenny!
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Thank YOU Hannah! (Could you also ask if they could start with my surgery? LOL)
 
DeusXM said:
It's also in the Times and Telegraph too if that helps, plus backed by Dr David Unwin....
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As you mentioned, the study is not exactly scientific. 🙂
 
stephknits said:
Hello Hannah, I would like to know if there are plans to run days a bit like living with diabetes, but for Type 1s who are over 30, as they seem to have been largely left out. I dont really get why the cut off was largely 30 years old? I understand the days might be difficult, as there would be far fewer of us to book on them!
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Hi @stephknits and @SB2015 and thank you for the comments. @SB2015 - glad to hear that you are enjoying the emails. We try to make sure that we communicate information to folks about things relevant to them, so if you have told us that you are T1, we will only send you info about T1 events and research etc. This is the same for T2, Parents and other types - so it's no a coincidence! 😉

In regards to adult events, thanks for bringing this up - We do have an 18+ one day event in London on 11 June which is not capped at 30 (so for T1 adults of any age 18+). The information about how to register is here: https://www.diabetes.org.uk/How_we_help/Care-events/Adult-Events-18-30-years/London-Adult-Event/

Unfortunately there aren't any further events for adults over 30 planned for this year, but the events team are starting their planning process for 2017 soon and will be looking at how we support T1 adults over 30 through care events - we are aware that there is demand for events such as these, so thank you for confirming there is an interest 🙂

Also, do keep an eye out on our website or for announcements later in the year for info about our 2017 events programme.

Thanks!
 
DeusXM said:
Well, there's always these ones from the doctor backing the petition....

http://www.diabesityinpractice.co.uk/media/content/_master/4311/files/pdf/dip4-3-102-8.pdf

http://www.practicaldiabetes.com/SpringboardWebApp/userfiles/espdi/file/March 2014/PP Unwin final proofs revised.pdf
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I have seen these before. It's interesting but I would still be cautious over any results - the first one (a pilot study) had just 69 participants (with 67 compliant) with the Doc himself stating it would need to be scaled up and there may have been biases with the way the participants were recruited. The second one had just 18 participants.
 
Just wanted to say I'm following this thread with interest 🙂

I'd like to second Jenny's suggestion for campaigning for Abbott to make Libres available to borrow from surgeries. I've been asking for years about borrowing a CGM, and my lovely DSN has now finally got the go-ahead for this (yay!), but I don't know how long I'll have to wait for one to be available, and I'll only be able to borrow it for a week. As I have very random patterns of bgls and especially large numbers of random hypos, a week, though much better than nothing, is not going to be long enough to give me the information I really need. And I may have to go into hospital to have the CGM fitted, which could be a big problem, as I react adversely to chemicals in hospitals and am likely to come out with my bgl running unusually high for some time 🙄 Being able to borrow a Libre from my surgery, and being able to borrow it for 2-4 weeks, would be brilliant.

I'd also like to second DiabeticLiberty's suggestion for educating medical professionals about diabetes. There really is an astonishing level of ignorance - realising within a couple of months of diagnosis that I knew more about the day to day management of diabetes than the average GP was a bit of a shock 😱 But I'd also like to see diabetes specialists educated about the fact that some of their patients may be managing other conditions which may have an effect on their diabetes, or on the way they manage their diabetes, and that the patients are likely to be more knowledgeable about these conditions than the diabetes specialists. And diabetes is not always the more serious of the conditions or the one which has to have priority in the event of a clash. I have more than once had to do what was better for my other illness, even though it wasn't what the diabetes consultant advised, and instead of asking for more information about why this was necessary and how my other illness effected me, and taking me seriously, diabetes consultants have treated me with patronising contempt 😡

And on the subject of other illnesses, if Diabetes UK is arranging any courses or events, I should be grateful if you'd remind the organisers that some people with diabetes won't be well enough to attend any courses or events in person, but they might still be interested. Please think about whether these things can be made available online (eg online carb-counting course, or anything like the expert patient programme) or via Skye to those who are housebound or unable to travel 🙂
 
Oh yes I would like to do some online courses as atm I'm not able to travel far.
 
DeusXM said:
2. Who are the main corporate donors to Diabetes UK, how much have they donated on a per company basis, and what agreements have been made with those companies in exchange for those donations?
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Hi @DeusXM - Sorry for the delay on getting back with this one! So, each of our corporate donors has their own unique agreement and the partnerships vary greatly. You can see all of the donors listed on our website here - https://goo.gl/9GltBV. Generally they will either sponsor a specific project, or they may have an on-pack promotion if they have a product, or we may be part of a Corporate Charity Partnership. So, for example, Tesco's has selected Diabetes UK to be part of their 'Charity Partnership' for a 3 year period alongside British Heart Foundation. You can read more about this Partnership on the website: http://tescocharitypartnership.org.uk/
Also, Betavivo have an on pack promotion on their cereals and have raised £50,000 through donating 25p from the sale of each product. They are also sponsors of the Tomorrow’s Leaders course which is a scheme to inspire Healthcare Professionals. As a general breakdown of what each partner is doing, here is a quick list:

Boots – Sponsor our 'Know Your Risk Tool'

Bunzl – Research

BUPA – We work in partnership with them on two online tools – 'Type 2 Diabetes & Me' & 'Diabetes in Healthcare'

Lilly – Sponsor the 'Diabetes Watch Online Tool'

LV (Liverpool Victoria Friendly) – Donate from their Enhanced Annuity Policy

Novo Nordisk – Work in partnership to create our 'Clinical Champions' scheme

Only By Nature – On pack promotion on their Frozen Yoghurts

Royal Mail – Charity partnership, they funded some of our 'Know Your Risk Roadshows'

Sanofi – Various - they have been a partner for many years and have sonsored our Healthcare Professional's Conference among other projects

Takeda UK – Sponsored 'State of the Nation' project

Thanks!
 
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Diabeticliberty said:
Possibly a little bit of an awkward subject but is anything being done in an effort to educate or re educate some of the more dogmatic members of the GP and practice nurse fold in an attempt to make them a little bit more empathetic to type 1 and type 2 diabetics who wish to play their full part in the effective management of their own condition but are restricted from doing so by having such basic requirements as test equipment restricted?.
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Possibly even more awkward, given that I've quoted things from the D-UK web site on here seeking clarification, is that the D-UK people themselves can sometimes seem stuck in that same dogma.
 
Thanks @Hannah M - sorry, I've got more questions now!

With Betavivo, is it necessarily wise for a producer of a product that is something like 50% carbohydrate to be involved with a charity dedicated to helping people who can't metabolise carbohydrates, and with their sponsorship of the Tomorrow's Leaders course, does their sponsorship by any chance extend to any of the materials used on the course? I'm interested to know if there's anything on this course about diet (and particularly, if there are any breakfast recommendations o_O)

Similarly, is it really a good idea to be involved with a yoghurt company that produces a yogurt that contains more carbs by weight than Coca-Cola? I'm all for taking money from corporations, but don't these on-pack promotions imply that these products are universally good/better choices for people with diabetes? I know everyone is different, your mileage may vary etc. but I can really easily see some of the perhaps less-well supported people with diabetes seeing the Diabetes UK pack promotion, and interpreting that as meaning they can eat these yogurts in place of regular ones and expect better long-term glucose control.

Sorry - I know that corporate donations are a bit of a case of dancing with the devil and things have certainly improved since the days when you had confectioners, international cereal manufacturers and statin producers as sponsors. But I know companies tend to sponsor charities with a view to getting some good PR in return and those who sponsor conferences etc. usually expect some sort of input into the presentation materials.
 
Snowdog63 said:
Possibly even more awkward, given that I've quoted things from the D-UK web site on here seeking clarification, is that the D-UK people themselves can sometimes seem stuck in that same dogma.
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I think I might accept a dogmatic reply rather than just completely bypassing the question which forgive me if I have missed something but thus far I cannot see a reply from D-UK :(
 
@DeusXM - some of us eat some things with no ill-effects - eg I have a Weetabix for my brekky each morning. I also invest as required in 6-packs of orange Lucozade since it's my fave for the purpose I use it - though I wouldn't ever drink it to quench my thirst. As a member of DUK since 1972 I would have absolutely no objection whatsoever to either of them sponsoring Diabetes UK and saying so on their packaging. I'd be pleased - more of my money helping support something I support is all it is !

DUK have to - and do - remain impartial - and the mere fact that Lucozade say on their bottles that they support the organisation, does not infer that DUK are recommending we all drink it !

I also know very well that people can be absolutely stupid. It is not within my powers, nor Diabetes UK's - to rectify that. LOL

We also support various other charities as and when - we are literally just swapping our car and the sellers have a 'thing' going with Acorns (a West Midlands Childrens Hospice etc charity) - for their vehicle sales if the customer makes a voluntary donation of £5, they match it. An extra fiver is absolutely nowt in comparison to the thousands you are spending anyway so I thought what a stonkingly brill idea this was. I doubt very much whether they have adverts up in their establishments - or offices - recommending this dealer !
 
Diabeticliberty said:
I think I might accept a dogmatic reply rather than just completely bypassing the question which forgive me if I have missed something but thus far I cannot see a reply from D-UK :(
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Sorry, I didn't mean on "here" as in this thread, I mean the forum in general.
 
Sadly my posting history doesn't go back far enough for me to find all my posts & give you an example. My point is simply that the D-UK web site, in places, seems to adhere to some very out of date ideas regarding fat & cholesterol plus there is some fairly unclear advice on "free sugars". It just occurs to me that if the forum members are able to work alongside the web site administrators, some of these pages can be re-written, clarified & brought up to date. 🙂
 
Snowdog63 said:
Sadly my posting history doesn't go back far enough for me to find all my posts & give you an example. My point is simply that the D-UK web site, in places, seems to adhere to some very out of date ideas regarding fat & cholesterol plus there is some fairly unclear advice on "free sugars". It just occurs to me that if the forum members are able to work alongside the web site administrators, some of these pages can be re-written, clarified & brought up to date. 🙂
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Whenever anything is pointed out to me I pass it along to DUK expressing members' concerns. I think part of the problem is that it is a pretty vast (and somewhat sprawling!) site, so whilst information is being updated a lot of the time, some things may remain that are a bit outdated. That's not the official DUK view of it, just the sense that I have gathered! 🙂
 
Northerner said:
Whenever anything is pointed out to me I pass it along to DUK expressing members' concerns. I think part of the problem is that it is a pretty vast (and somewhat sprawling!) site, so whilst information is being updated a lot of the time, some things may remain that are a bit outdated. That's not the official DUK view of it, just the sense that I have gathered! 🙂
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I am not a current member but would respectfully ask you to highlight to them that it would appear fairly unlikely that I would become one if they are unable or unwilling to answer such a fundamental question, at least fundamental to what it appears to me to be an alarming number of all types of diabetics who appear to be directly at odds with their own GP's and practice nurses. Do D-UK intend at any point to attempt to have some of the more difficult GP's and practice nurses who refuse to prescribe the required amount of test equipment to some of our fellow diabetics to change their awkward and sometimes bloody minded stance? Theoretically this could be done with the lobbying power of a charity organisation behind it and dome perhaps on mass rather than individual patients taking on what must appear to them to be a sometimes futile battle against 'white coat man'
 
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