Ask Diabetes UK!

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Northerner

Northerner

Admin (Retired)
Relationship to Diabetes
Type 1
Some of you who have been with the forum for a while will have noticed that Diabetes UK have become much more supportive of our community over the past year or so, what with the upgrading of the platform and greater visibility throughout their home website 🙂 They are also hoping to offer support in answering any questions you might have about the organisation, research that's proposed or under way, viewpoints and recommendations, help they can give to people in the form of their Helpline and Advocacy services - so here's your opportunity to ask questions. 🙂

To help us in this task we have Hannah, who works in the Supporter Care section who will hopefully be able to answer your queries and keep us updated with what is happening at DUK.🙂

So, please ask away! 🙂
 
Hello everyone, as Northerner has kindly mentioned, I’m here to answer any niggling questions you may have about Diabetes UK, pass on your views or thoughts and offer insight to things happening in the organisations. I’m really looking forward to getting to know you all and become part of this very supportive community. 🙂:D
 
Hi Hannah. I'd just like to say that I have found this forum and the DUK website a great help since being diagnosed last August. Especially as I'm a bit of an odd ball diabetic!
 
Hi Northener. I thought you created the forum
 
Hi Hannah

I'd like to know what Diabetes UK funded research projects are currently underway and what is proposed, in particular those specific to Type 1.
 
Hi Hannah, there's three things I'd be interested in finding out please!

1. What percentage of the DUK research budget for T1 is allocated towards cure research, and what percentage does that represent of total expenditure?

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?

3. Diabetes UK has been instrumental in things like ensuring pen needles are on prescription - what steps is the charity taking to get existing non-invasive BG testing systems such as the Freestyle Libre on prescription?
 
Matt Cycle said:
Hi Hannah

I'd like to know what Diabetes UK funded research projects are currently underway and what is proposed, in particular those specific to Type 1.
Click to expand...

Hello Matt - of course, there's a large number of research projects funded each year, varying greatly in size and cost.There are a few too many for me to list, but luckily Diabetes UK have been very helpful and put them all into a fancy document for us: https://www.diabetes.org.uk/Documents/Research/Research project directory/Our Research 2015-2016.pdf

The main projects that are being funded at the moment specifically around Type 1 are:
- Vaccine for Type 1
- 2 x Projects looking at Artificial Pancreas
- Islet Transplant

To see all Type 1 funded research projects at the moment, you can have a look here: https://www.diabetes.org.uk/Research/Our-research-projects/?p=2&query=&filters=369

I hope that answers your question Matt 🙂
 
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!
 
Hi Hannah

I really like the regular emails that I get from DUK that are specifically targeted at those of us with T1. This means that the hyperlinks are specific to T1 and include prompts about research and other info. I am not sure whether I get these because I am a member of DUK or just that I have registered for them.

I too am interested in Living with T1 Diabetes days, and disappointed that there is a cut off at 30 (apart from one date that I could not get to). There are now 20% of those diagnosed with T1 over the age of 40, and loads of others now live beyond the age of 30, there is a population for whom these days are not available. It would be great to see the wider T1 population included in the provision. I know that the days for younger people are targeted at tranisitions so may not be as appropriate for the older ones. Here's hoping that we too get a look in in the future.
 
DeusXM said:
Hi Hannah, there's three things I'd be interested in finding out please!

1. What percentage of the DUK research budget for T1 is allocated towards cure research, and what percentage does that represent of total expenditure?

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?

3. Diabetes UK has been instrumental in things like ensuring pen needles are on prescription - what steps is the charity taking to get existing non-invasive BG testing systems such as the Freestyle Libre on prescription?
Click to expand...

Hi DeusXM, thanks for your questions, It's so nice to see such an interest in what's happening 🙂

I'm afraid I'll have to delay an answer to Qs 1 & 2 for now, but I didn't want to leave you waiting over the weekend (and a Bank Holiday weekend at that!)
The Research team are kindly having a look at the data to get an answer to Question 1 for me, and I the again, the corporate team are going to give me some informaiton too. They were however, delighted to know what you folk are interested in - so already it looks like these questions can help us to think about the data we share and how we break it down, which is great!

Question 3:
We are in contact with Abbott about the Freestyle Libre and the issue of it being available on prescription. In order for the device to be available, Abbott must apply for National Funding. In order to do this, they need to gather data on the cost effectiveness of the Libre to make the case to governments and insurers for reimbursement (reimbursement would mean the product could be prescribed to individuals through the NHS). They’re still gathering this data which, unfortunately, will take some time. The device therefore cannot currently be considered for inclusion on the prescription database. Abbott’s sole intention at present is to sell the Libre device online direct to patients.

We are continuing to raise this issue with the company about submitting the device for national funding. However, we are not in a position to insist that Abbott should apply for national funding. Abbott, along with any technology or pharma company are global companies who make marketing decisions based on many factors so, although we can try and influence the company as much as possible, and raise the issues that people raise with us, we can't guarantee that they will act upon these views.

So in short (apologies for the essay!) – We are continuing to put pressure on Abbott to submit the data needed to apply for national funding, as only they can apply for the product to be available on the NHS.

@DeusXM - I hope that helps - I will be back next week with more answers for you 🙂
 
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!'
 
I would also like to know about groups and support in place specifically for type 1's. I went to a support group once and I was the only type one there.
 
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?
 
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? I am aware that Diabetes UK does offer a support service for patients who encounter significant difficulty and I fully applaud them for that. Perhaps though it might finally be time to address the problem from a different direction. I do not ask this from my own current situation but you must appreciate that even on my very short time here I see almost daily some very poor and fairly desperate sounding individuals who just want as long and as healthy a life as good management will allow them. Adequate testing is a cornerstone in this management. Perhaps the doctors might benefit from the occasional nudge to keep them focused on this point.
 
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?
Click to expand...
Just read the article interesting.
 
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