# Ask Diabetes UK!



## Northerner

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!


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## Diabetes UK

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.


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## Stitch147

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!


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## grovesy

Hi, I have been on here since the early days.


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## Northerner

grovesy said:


> Hi, I have been on here since the early days.


You joined two days after me @grovesy !


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## rustee2011

Hi Northener. I thought you created the forum


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## Northerner

rustee2011 said:


> Hi Northener. I thought you created the forum


No rustee, it was someone else (who no longer posts here). I took over the running of it in March 2009


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## Matt Cycle

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.


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## DeusXM

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?


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## Diabetes UK

Stitch147 said:


> 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 @Stitch147 - Glad to hear that you've found the forum & website such a help


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## Diabetes UK

grovesy said:


> Hi, I have been on here since the early days.


Hi there grovesy - pleasure to be aquainted with you  I'm sure you you will be able to fill me on all the tales of the fourm over the years


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## Diabetes UK

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.



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


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## stephknits

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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## SB2015

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.


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## Diabetes UK

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?



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


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## trophywench

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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## Amberzak

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.


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## DeusXM

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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## Diabeticliberty

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.


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## grovesy

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?


Just read the article interesting.


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## Matt Cycle

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?



That's a combination int it?  .co.uk and the Daily Fail.


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## DeusXM

Matt Cycle said:


> That's a combination int it?  .co.uk and the Daily Fail.



It's also in the Times and Telegraph too if that helps, plus backed by Dr David Unwin....


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## Diabetes UK

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!'



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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## Maz2

I would also like to say how helpful I have found this site.  I was told I was at high risk a few weeks ago and felt really upset.  I have had very good advice on here and feel much better about everything now.


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## trophywench

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!




Thank YOU Hannah!  (Could you also ask if they could start with my surgery?  LOL)


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## Matt Cycle

DeusXM said:


> It's also in the Times and Telegraph too if that helps, plus backed by Dr David Unwin....



As you mentioned, the study is not exactly scientific.


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## Diabetes UK

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!



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!


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## DeusXM

Matt Cycle said:


> As you mentioned, the study is not exactly scientific.



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/Sp.../March 2014/PP Unwin final proofs revised.pdf


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## Matt Cycle

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



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.


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## TheClockworkDodo

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


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## Ljc

Oh yes  I would like to do some online courses as atm I'm not able to travel far.


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## Diabetes UK

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?


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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## Snowdog63

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?.



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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## DeusXM

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 )

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.


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## Diabeticliberty

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.




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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## trophywench

@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 !


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## Snowdog63

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



Sorry, I didn't mean on "here" as in this thread, I mean the forum in general.


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## Snowdog63

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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## Northerner

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.


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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## Diabeticliberty

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!




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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## Diabetes UK

Snowdog63 said:


> 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.



As @Northerner has mentioned our website is somewhat sprawling - with a vast amount of information on there, and sometimes pages may get overlooked.  We're currrently having a big re-structuring of the website that will hopefully help with this, although I'm sure you can appreciate that this is a timely task. In the meantime, we do understand that information & research is constantly changing and although we brief and train staff with updated info, parts of the website may require changing too. We welcome any feedback to help us ensure that we are giving the highest quality of informaiton and are open to forum members raising any concerns they have. We've already made some tweaks on the website, following concerns raised through the Forum, so I'd like to thank you for bringing up these issues and for your participation.  I'll be feeding back any information you give me to the relevant teams and this will help us to shape information we are providing for the future.


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## Diabetes UK

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? 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.



Hi @Diabeticliberty and @TheClockworkDodo - First of all, apologies for my delay on this one. It's a fair observation and there are many obstacles at play with getting CCG's and GPs to recognise the importance of things such as access to strips.  Certainly in an ideal world, we would like to see everyone have the choice to test in the way that will help them to manage their own diabetes and access to strips is at the forefront of some of our campaigning. 

Alongside trying to make changes at the very top, we are also trying to address the issues in the middle and so a huge part of what we do is around engaging and inspiring Healthcare Professional's and giving them the necessary skills to deliver good diabetes care. We work to engage with them to find out what support it is that they need from Diabetes UK and use this knowledge to provide them with the necessary tools and resources to deliver quality diabetes care.

We run a number of networks, such as our Primary Care Network, to try to circulate the latest examples of best practice, lastest treatments and research going on in diabetes and encourage practices to share informaiton with eachother. 

We also run schemes such as our Clinical Champions scheme. GP's in the scheme work hard in their own area to try to improve diabetes care on a local level:  https://www.diabetes.org.uk/Professionals/Resources/Clinical-Champions-and-networks/

There is obviously still lots to do, so we understand that this is a big problem and one that we are working to address.


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## Diabeticliberty

Hannah M said:


> Hi @Diabeticliberty and @TheClockworkDodo - First of all, apologies for my delay on this one. It's a fair observation and there are many obstacles at play with getting CCG's and GPs to recognise the importance of things such as access to strips.  Certainly in an ideal world, we would like to see everyone have the choice to test in the way that will help them to manage their own diabetes and access to strips is at the forefront of some of our campaigning.
> 
> Alongside trying to make changes at the very top, we are also trying to address the issues in the middle and so a huge part of what we do is around engaging and inspiring Healthcare Professional's and giving them the necessary skills to deliver good diabetes care. We work to engage with them to find out what support it is that they need from Diabetes UK and use this knowledge to provide them with the necessary tools and resources to deliver quality diabetes care.
> 
> We run a number of networks, such as our Primary Care Network, to try to circulate the latest examples of best practice, lastest treatments and research going on in diabetes and encourage practices to share informaiton with eachother.
> 
> We also run schemes such as our Clinical Champions scheme. GP's in the scheme work hard in their own area to try to improve diabetes care on a local level:  https://www.diabetes.org.uk/Professionals/Resources/Clinical-Champions-and-networks/
> 
> There is obviously still lots to do, so we understand that this is a big problem and one that we are working to address.





Thank you for finally acknowledging our question and demonstrating a level of dexterity in providing an answer with enough ambiguity as to not provide an answer at all really. The obstacles or let's face it major obstacle at play here appears to be that GP's and CCG's want to 'silo budget' and I don't wish to be blunt but I will just on this occasion, let the poor dumb saps who don't want some extremely unpleasant and life restricting complications associated with poor diabetic control that a lack of effective testing is usually associated with in 10 or 15 years time become some other NHS departments financial burden. Such a cruel level of cynicism by them just to make  the current financial years figures look kind of acceptable I don't feel you will disagree is directly at odds with the best interests of their patients and quite frankly is absolutely abhorrent practice.  All that I implore is that you tell them this because in the majority of cases they appear to not want to remove the stethoscope from their ears when their sometimes desperate patients make desperate requests. You don't need to dig too deep on this forum for an abundance of evidence of this scenario.

For the record I do not have problems obtaining test equipment so have no personal advantage to gain from this. I just cannot sit idly by and see other diabetics given some 'old flannel' regarding clinical need. 

I would then hope to directly address any forum members present or future who encounter problems obtaining prescriptions from difficult doctors. I hope that I am wrong but fear that I am right. You might be on your own folks.


----------



## DeusXM

> We work to engage with them to find out what support it is that they need from Diabetes UK and use this knowledge to provide them with the necessary tools and resources to deliver quality diabetes care.



I might be missing the point here, but wouldn't it make far more sense to ask the patients, rather than the DSNs, about what is needed by a DSN to provide quality diabetes care? Surely every DSN is going to state they're doing a great job? And then, instead of 'engaging and inspiring' those healthcare people, shouldn't we be _telling_ them where they have to improve?

We don't need CCGs to recognise the importance of access to strips or for DSNs to be 'inspired' to read up a little more. We just need them to do it whether they want to or not. I'd suggest lobbying the DoH to make restricting test strips a fineable offence, and D-UK naming and shaming bad GP surgeries, would do far more to get results more quickly.


----------



## Diabeticliberty

DeusXM said:


> I might be missing the point here, but wouldn't it make far more sense to ask the patients, rather than the DSNs, about what is needed by a DSN to provide quality diabetes care? Surely every DSN is going to state they're doing a great job? And then, instead of 'engaging and inspiring' those healthcare people, shouldn't we be _telling_ them where they have to improve?
> 
> We don't need CCGs to recognise the importance of access to strips or for DSNs to be 'inspired' to read up a little more. We just need them to do it whether they want to or not. I'd suggest lobbying the DoH to make restricting test strips a fineable offence, and D-UK naming and shaming bad GP surgeries, would do far more to get results more quickly.





Ask the patients??????? Surely not, what do they know about it? Whining and whingeing with their annoying little complaints. To hear them go on you would think they were ill. We have budgets to meet and statistics to remain inside the parameters of. This is the really important stuff not the petty things like giving the great unwashed a better quality of life


----------



## Northerner

Diabeticliberty said:


> Ask the patients??????? Surely not, what do they know about it? Whining and whingeing with their annoying little complaints. To hear them go on you would think they were ill. We have budgets to meet and statistics to remain inside the parameters of. This is the really important stuff not the petty things like giving the great unwashed a better quality of life


Actually, the HCPs are supposed to ask the patients - self-care regimes for all diabetics should be discussed on an individual basis. It's not happening for a variety of reasons, partly ignorance by some HCPs, partly 'we know best' and not really listening, but mostly lack of immediate funding and resources (I say 'immediate' because far more gets spent down the line treating avoidable complications). Personally, if pressure is to be applied by DUK I believe it needs to be directed at NICE to firm up on their recommendations - a recommendation to NEVER deny a motivated person the ability, tools and support to use self-monitoring to establish their food tolerances would be a start. At the moment it's far too woolly and lets CCG accountants off the hook. Moreover, I think the recommendations should be to offer all newly-diagnosed people the education, support and tools for self-monitoring - it should be part of the post-diagnosis programme. Follow-up to check progress and discuss meter readings should be done monthly, if not weekly. Currently, far too many people (the vast majority?) get NO help after their diagnosis, other than 'come back on 3/6/12 months and eat healthily, lose weight - oh, and you don't need to test' . Again, this costs money and the government of the day controls the purse strings.

You won't change things by engaging patients to harass their HCPs. We are a relatively small number of people who understand what works and sought out advice and support in communities like this, the vast majority of people have no inkling that the pills they were given won't solve their problems, that they need to know how it all works. I don't think that much practical pressure can be brought to bear on General Practice either - they don't just deal with diabetes they deal with _everything_, so they need to be guided by up to date, valid directives, which brings me back to NICE. And NICE need some overwhelming research results that show that informed self-monitoring really works, instead they are relying on some very old, flawed (in my opinion!) research that unfortunately supports the accountant view that self-monitoring doesn't really achieve much.


----------



## Diabetes UK

DeusXM said:


> I might be missing the point here, but wouldn't it make far more sense to ask the patients, rather than the DSNs, about what is needed by a DSN to provide quality diabetes care? Surely every DSN is going to state they're doing a great job? And then, instead of 'engaging and inspiring' those healthcare people, shouldn't we be _telling_ them where they have to improve?
> 
> We don't need CCGs to recognise the importance of access to strips or for DSNs to be 'inspired' to read up a little more. We just need them to do it whether they want to or not. I'd suggest lobbying the DoH to make restricting test strips a fineable offence, and D-UK naming and shaming bad GP surgeries, would do far more to get results more quickly.



Certainly asking the patients is where the focus should be in regards to accessing test strips, HCP's should be treating 'self-management' as exactly that, something that is tailored to the 'self'. It is a false economy to restrict test strips and people should agree the amount they have with their HCP on an individual basis, rather than being dictated to by blanket local policies. As @Northerner mentioned, it is more cost effective in the long term for strips to be provided, alongside providing people with information and an understanding of managing their diabetes - it is just a matter of getting this argument across to convince CCG's that it is in fact a better solution.

The subject of engaging HCP's is looking at a more broader picture of encouraging HCP's to be up to date with diabetes care and to encourage them to engage, so that they are giving out the right information to patients and are well informed.  Hopefully, this will have a positive outcome on the diabetes care that individuals recieve.


On a side note, DUK recently had a survey, which we were using to try to get a broader understanding of the issues around test strip restrictions, such as how many people are affected by it, what reason's they were being given by their GP and what restrictions they were experiencing. Gathering this data all helps in building up a body of evidence so that calls to action can be made to CCG's and to put pressure on the NHS to influence changes.


----------



## trophywench

I remember the survey well Hannah - but - where are the results thereof? - or, when will they be available?  Whether DUK are able to glean anything meaningful from them which might enable them to take any action, or not.  We all know very well that if you bang your head on  awall for long enough and hard enough - eventually a crack should appear.  But we KNOW it won't be instant !  LOL

I mean - I just did a BEAT Diabetes survey about management of BP, today.  At the end it asked me to give my email address if I wanted to know the results thereof.  I did, so I gave it them.  I can now confidently forget about it FTB and not waste time wondering what's happened, can't I?


----------



## FergusC

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? <snip>


Well, I quickly learned that the best way to deal with "difficult" HCPs was to phrase things in terms that makes it difficult to argue with. (I dont "do" LCHF, I practice carbohydrate controlled diet, and I don't practice SMBG, I practice t as part of a closed loop control of my diet!)
What do mean? you want me to practice a carb uncontrolled diet?


----------



## Diabeticliberty

FergusC said:


> Well, I quickly learned that the best way to deal with "difficult" HCPs was to phrase things in terms that makes it difficult to argue with. (I dont "do" LCHF, I practice carbohydrate controlled diet, and I don't practice SMBG, I practice t as part of a closed loop control of my diet!)
> What do mean? you want me to practice a carb uncontrolled diet?




Once again I did not raise this question for my own benefit. When faced with a similar situation with my previous GP I produced enough statistical data from spreadsheets on which I stored results to make his argument somewhat laughable and he conceded. I changed GP's in any case afterwards as I felt I could no longer trust him to look after the best interests of my health. I asked the question of D-UK because it appears that more and more diabetics are being denied test equipment which they so obviously need. It was my hope that D-UK might offer an answer that gave diabetics at odds with their own doctors some hope that an organisation which claims to best represent the best interests of diabetics  would perhaps stand behind them. D-UK have given the answer above. I hope that it provides the diabetics of which i speak some hope since they appear to have little else to cling on to.


----------



## robert@fm

DeusXM said:


> 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?





Matt Cycle said:


> That's a combination int it?  .co.uk and the Daily Fail.



Even the DM isn't always wrong.  Although that article does have the obligatory stupid (and massively downvoted) comment about "fat causes diabetes".


----------



## SB2015

FergusC said:


> Well, I quickly learned that the best way to deal with "difficult" HCPs was to phrase things in terms that makes it difficult to argue with. (I dont "do" LCHF, I practice carbohydrate controlled diet, and I don't practice SMBG, I practice t as part of a closed loop control of my diet!)



What is SMBG?  Perhaps it is too late but I have failed to work this out and suspect that in the morning it will be very obvious.


----------



## Ljc

SB2015 said:


> What is SMBG?  Perhaps it is too late but I have failed to work this out and suspect that in the morning it will be very obvious.


I think the it may be
Self monitoring blood glucose


----------



## FergusC

@SB2015 Yep SMBGis just that; we test our BG, we record, we act on it, rather than relying on a HCP doing it!


----------



## SB2015

Things often make more sense in the morning!!
I have just never seen that acronym before.
Thanks


----------



## Snowdog63

I've given up. There are too many acronyms in this thread for me to keep up with!!


----------



## Northerner

Snowdog63 said:


> I've given up. There are too many acronyms in this thread for me to keep up with!!


Here you go Snowdog!

https://forum.diabetes.org.uk/boards/threads/acronyms-and-abbreviations.16567/

Please let me know if there's anything you think needs adding


----------



## Snowdog63

Thanks! I should've thought to ask. As if you lot wouldn't have thought of this already!


----------



## Ralph-YK

FergusC said:


> Well, I quickly learned that the best way to deal with "difficult" HCPs was to phrase things in terms that makes it difficult to argue with. (I dont "do" LCHF, I practice carbohydrate controlled diet, and I don't practice SMBG, I practice t as part of a closed loop control of my diet!)
> What do mean? you want me to practice a carb uncontrolled diet?


Ohhh, I'm going to use that when I see the dietican next week.


----------



## Diabetes UK

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?



Our dietary advice is generally around healthy eating and balanced diets as its the most broadly beneficial diet and tends to be the option that people are likely to stick to long-term, however, saying that, we are fully supportive of _any_ diets that individuals find to be beneficial to them. If anyone wishes to follow a low carb diet that’s absolutley fine, we'd just advise discussing it with their GP in advance. The only issue is that we don’t yet know the long term results of low-carb, and that's why we're continuing to fund a low calorie diet study. People need to find a diet that they can stick to long term. There are an awful lot of ‘evidence based diets’ now, yet the vast majority of studies all suggest that healthy balanced diets are the most likely to be sustained. Essentially, we support whatever works for individuals, be that low carb, low cal, or Mediterranean to name but a few.

Hope that makes sense!


----------



## Diabetes UK

trophywench said:


> I remember the survey well Hannah - but - where are the results thereof? - or, when will they be available?  Whether DUK are able to glean anything meaningful from them which might enable them to take any action, or not.  We all know very well that if you bang your head on  awall for long enough and hard enough - eventually a crack should appear.  But we KNOW it won't be instant !  LOL
> 
> I mean - I just did a BEAT Diabetes survey about management of BP, today.  At the end it asked me to give my email address if I wanted to know the results thereof.  I did, so I gave it them.  I can now confidently forget about it FTB and not waste time wondering what's happened, can't I?



The survey closed early last week and we're currently analysing the results - once done, we will be publishing this on the website soon but I have passed on to the team the option to update people via email about the results, thanks for the suggestion! Our Policy Team will be going back to talk to NHS England about what they can do to improve access to strips and choice of meters. Fingers crossed, slowly and steadily, we can implement changes, but with all things of this nature, they rarely come quickly - although it is not unheard of...


----------



## DeusXM

Hannah M said:


> Our dietary advice is generally around healthy eating and balanced diets as its the most broadly beneficial diet and tends to be the option that people are likely to stick to long-term, however, saying that, we are fully supportive of _any_ diets that individuals find to be beneficial to them. If anyone wishes to follow a low carb diet that’s absolutley fine, we'd just advise discussing it with their GP in advance. The only issue is that we don’t yet know the long term results of low-carb, and that's why we're continuing to fund a low calorie diet study. People need to find a diet that they can stick to long term. There are an awful lot of ‘evidence based diets’ now, yet the vast majority of studies all suggest that healthy balanced diets are the most likely to be sustained. Essentially, we support whatever works for individuals, be that low carb, low cal, or Mediterranean to name but a few.
> 
> Hope that makes sense!



What you say makes sense...but it's completely at odds with the actual advice you give.

https://www.diabetes.org.uk/Guide-t...ith-diabetes/What-is-a-healthy-balanced-diet/

You define a 'balanced diet' as something that's based around starches and with little fat. I'm not sure you quite understand what I'm getting at - what I'm suggesting (and the evidence is suggesting) is that the standardised definition of 'healthy eating' and a 'balanced' diet is incorrect. There's nothing 'balanced' about a diet primarily based on starches with little fat, in the same way that there's nothing 'balanced' about a high fat, low carb diet either. 'Balance' would imply equal proportions of macro-nutrients which is not what anyone is truly advocating. I'm not sure why 'balance' is regarded as inherently good. 

I would also question how much awareness there genuinely is of what constitutes a low-carb diet since you state that you're funding a low calorie study. Those are completely different things. If you were genuinely looking into the long-term results, you would be funding a low-carb, high fat diet study.

I agree that people need to find a diet to stick to in the long term but the arguement seems to be framed around the idea that the easiest one to stick to is also probably the worst one overall. There's no point following a diet that's easy to stick to if it makes managing your diabetes more difficult.


----------



## Martin Canty

DeusXM said:


> I agree that people need to find a diet to stick to in the long term but the argument seems to be framed around the idea that the easiest one to stick to is also probably the worst one overall. There's no point following a diet that's easy to stick to if it makes managing your diabetes more difficult.


I prefer to look at my diet as a "Way of Eating".... Before I was diagnosed T2, I used to eat a "balanced" diet with lots of grains, pulses, beans & starch, now I don't, the result is that I have evolved how I eat into a sustainable LCHF diet that I enjoy. Sustainability is more about education than a cookie cutter approach to telling people what to eat.

I have seen so many times people caught up on calories rather than looking at carbs, hence a carb rich diet where a population is growing steadily more obese by the decade (with the attendant healthcare problems that that causes). Fats sate the appetite so portions are naturally smaller (hence less calories).


----------



## Diabetes UK

DeusXM said:


> 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 )
> 
> 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.[/USER]



Yes @DeusXM - you're not wrong, there is some element of danger when working with Corporate Partners and the risks that can arise when developing partnerships are something that we do have to be aware of.  Each corporate partner has to go through a Risk Assesssment with us, something that we know is particularly important when partnering with food & drink comapnies or pharmaceutical companies.  Partners are developed with consideration and have to meet all the requirements in our 'Working with Funding Partners Policy' -  an exciting read if you wish to have a look. 

https://www.diabetes.org.uk/Documents/Corporate/FINAL Working with Companies Policy 2015 (updated November 2015).pdf[/USER]


----------



## Diabetes UK

Amberzak said:


> 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.



Hi @Amberzak - Just thought I'd say that I passed on your comments to highlight your experience at the support group, but thought I'd mention that you may want to get in touch with your Regional Team - The managers know the groups in each area really well so they should be able to highlight any groups that are more focussed around type 1 or have more type 1 members, or any other things that may be happening at a more local level.
There is an additional online community for young adults through the #Type1uncut project as well.


----------



## Diabetes UK

DeusXM said:


> What you say makes sense...but it's completely at odds with the actual advice you give.
> 
> https://www.diabetes.org.uk/Guide-t...ith-diabetes/What-is-a-healthy-balanced-diet/
> 
> You define a 'balanced diet' as something that's based around starches and with little fat. I'm not sure you quite understand what I'm getting at - what I'm suggesting (and the evidence is suggesting) is that the standardised definition of 'healthy eating' and a 'balanced' diet is incorrect. There's nothing 'balanced' about a diet primarily based on starches with little fat, in the same way that there's nothing 'balanced' about a high fat, low carb diet either. 'Balance' would imply equal proportions of macro-nutrients which is not what anyone is truly advocating. I'm not sure why 'balance' is regarded as inherently good.
> 
> I would also question how much awareness there genuinely is of what constitutes a low-carb diet since you state that you're funding a low calorie study. Those are completely different things. If you were genuinely looking into the long-term results, you would be funding a low-carb, high fat diet study.
> 
> I agree that people need to find a diet to stick to in the long term but the arguement seems to be framed around the idea that the easiest one to stick to is also probably the worst one overall. There's no point following a diet that's easy to stick to if it makes managing your diabetes more difficult.



As you say, there are really promising results from the studies on low-carb diets - unfortunately, the studies are still very small and results tend to get cherry picked and so the evidence is not always reliable. It doesn't mean that there are no benefits to low-carb diets at all, it is just that the evidence is not yet enough for any fundamental changes in advice to be made. There has been a big response to the NOF report from experts, which you may find interesting - you can view here. 

There can be a lot of confusion around what all the different diets mean. The DiRECT study which we're funding on low-calorie diets is in fact quite low in carbs too, however it is testing whether a low-calorie diet, made up of starchy veg and shakes, can put Type 2 into remission - so it’s slightly different to the diets we might recommend for managing T2. It would certainly be beneficial to fund some further studies into the low-carb diets which we are open to doing, however we don’t propose research projects ourselves, we review applications that come into us, so it is a case of someone submitting a viable research study.

In terms of a balanced diet, the term suggests that you need to consume from all of the main food groups, in order to get all the essential nutrients needed. The amount eaten from each group is not necessarily equal, but it is ensuring that you are not just eating from 1 or 2 food groups. It is about having a broad diet.  Although other diet options may well be beneficial, current evidence supports the benefits of a healthy, balanced diet.
There is a more detailed account of our advice on this, in particular dieatary fats, which has been put together in consultation with the British Dietetic Association and may be of interest to you:  https://www.diabetes.org.uk/Documents/Dietary%20Fat%20Consumption%20in%20the%20management%20of%20Type%202%20Diabetes.pdf

Dietary advice has changed a lot over the years and I'm sure it will continue to change as a result of continuous research studies and clinical trials, providing detailed evidence of the results.


----------



## DeusXM

Thanks Hannah - I have to say I found the expert response to the NOF fascinating, not least because the common criticism was we don't have any long term evidence (which begs the question of why isn't the low fat diet under the same scrutiny, and shouldn't we therefore be doing these long term tests?) and at least one of the NOF critics admits the studies they've done on cholesterol don't actually support the accepted wisdom.

Re DiRECT, as you say, there is a lot of confusion, not least because you say it's a low-carb diet...but then say it's based on starchy veg. I appreciate you're not a dietician but this is diabetes basics here.

Re: 'balanced' diets, again, I appreciate you aren't the right person for this but I'm having tremendous difficulty understanding how 'a balanced diet includes a bit of everything you need ' translates to 'lots of carbs, a bit of protein and minimise fat' but not 'minimise carbs, a bit of protein and lots of fat'. Again this is what I'm trying to get at, that the assumption that fat is bad and therefore not up for discussion is dubious at best.

I take on board your point about research and I have to say, I'm a bit shocked. Obviously im no expert on how funding works but am I reading this right, that Diabetes UK waits for people to come to them for funding? You're supposed to our advocate. You're supposed to represent us. Why isn't there a medical board saying 'hey, we need to know more about this approach?' and then advertising that funding is available? Otherwise, we're all just going to be sat here hoping done postgrad happens to research something that's helpful. Surely this is a fundamental basic part of the charity's purpose? It's your job to propose research, surely?


----------



## trophywench

I think the universities usually have to decide what they are interested in researching - it's not up to individual funders.  I think they take it in turns - Warwick Uni did shedloads of diabetes work for donkeys years - and then stopped !


----------



## Copepod

Sometimes whole research teams move from one institution to another. I know it's not diabetes related, but it's an example of which I have personal knowledge: several years ago, Sea Mammal Research Unit moved from British Antarctic Survey HQ in Cambridge to St Andrews University.


----------



## DeusXM

trophywench said:


> I think the universities usually have to decide what they are interested in researching - it's not up to individual funders.  I think they take it in turns - Warwick Uni did shedloads of diabetes work for donkeys years - and then stopped !



I get that, but surely any charity looking to find the best answers for people with diabetes should be playing a leadership role in research?

A case in point; there's obviously debate over the impact of particular diets. Surely it makes sense for Diabetes UK to have a research board that then flags up 'hey, we will make £500k available for an institution to research the impact of diets x, y and z on people with diabetes'? It seems insane that the main funding body for diabetes-related research should be a purely passive association that sits there hoping that eventually someone decides to research something that's a common concern. Again, it's simply not good enough to look at one particular diet and shrug that we don't know enough about the long-term impact. Research the long-term impact then! If you've got multiple GPs reporting in dramatic improvements based on doing the opposite of the official recommendations, hasn't that motivated anyone at Diabetes UK to try investigating further? 

These decisions should NOT be left to universities to decide what they want to research. Diabetes research should be driven, above all, by people with diabetes and their representatives, because they are the ones who actually know what questions need to be answered.


----------



## trophywench

But - Uni research depts. are all attached to their hospitals aren't they?  so unless the hospital needs the students (and therefore their future consultants) to become expert in some area - they are not going to want to plough all that many resources into it all, Deus.  Each dept of each Uni has to show - not profit - but a good return on the investment.  There is no great benevolence at work anywhere here - only if there is either kudos or acclaim; proof of them being good at whatever they happen to be good at, to attract students and money.

Recruiting the patients to take part in the trials ?  You'd think that would be easy - not so!  The paperwork the researchers have to provide for the professionals they want to pitch this to, is enormous and equally costly and takes ages because of all the hoops it has to jump through before it's able to go Live. 

I was lucky enough to be a member of the specialist Diabetes Group that was set up at Warwick Uni Medical School to work alongside the Researchers and Dons there.  At the time it was set up, none of those people could see how much lay diabetics could help them. 

How many times have you perused or taken part in some survey that some student is doing at some Uni, as part of their Ph D - and how many times have you or someone else said or thought 'Well - if he wants to find THAT out - he's asking the wrong blooming questions!' or 'Why isn't there an option for some other alternative here - nobody these days still does the things you have a choice of as answers!'  Exactly! - it's because diabetics are not informing them before they start!

WE trained THEM - and eventually Warwick Ethics Committee refused to entertain proposals that had or could have any involvement of people with diabetes unless we'd seen it first and approved it!  The research student used to come with whoever their Prof was and present their proposal and we'd all talk about it quite openly with them, around a very large table LOL  Consensus was always reached and there was usually quite a bit of laughter involved.  This is one of the reasons why they were so good at it all, in the finish.

Other Unis have learned from the Warwick blueprint - but not all of them as yet - hence we still get the survey monkeys with the daft questions!


----------



## Northerner

How about if Type 2s respond to the DUK survey about research priorities:

https://forum.diabetes.org.uk/boards/threads/type-2-diabetes-priority-setting-partnership.59873/


----------



## Diabetes UK

There's a really handy little diagram on the website that explains the process of selecting research proposals, just at the bottom of this page: https://www.diabetes.org.uk/Research/Our-approach-to-research/

Some of the research propsals are from universities - we receive hundreds of propsals every year, which we narrow down and fund on a rolling, 6 month basis. The applicants range from small scale trials, up to large scale propsals from experts in their  field.  Each one goes through the same process to establish if it is scientifically viable and whether it will benefit those living with diabetes. There's close consultation with scientists and healthcare professionals, but we do also work closely with people living with diabetes (our Grants Advisory Panel), who help us in the shortlisting process to establish which projects to fund.

And of course, we do research beforehand, to see what people would like to see being funded, like the survey that Northener has mentioned and probably some of the survey monkeys you will see floating around with daft questions  We will keep pestering you to find out what you'd like so please do get involved! You are very welcome to email the research team too, they are happy to answer questions or take feedback - research@diabetes.org.uk


----------



## Copepod

Not all publically funded research is done by universities. For example, a few years ago, I worked for MRC Epidemiology Unit, which carried out research relating to type 2 diabetes, among other things. Some members of academic staff held joint posts with universities (usually Cambridge University, as main base of unit was in Cambridge, with satelite units at Ely and Wisbech), and all clinicians who came into contact with research volunteers, also held honorary NHS posts. MRC = Medical Research Unit, which has been funded by British Government since 1913. MRC Epidemiology Unit isn't nearly as old as MRC.


----------



## DeusXM

> There's a really handy little diagram on the website that explains the process of selecting research proposals, just at the bottom of this page: https://www.diabetes.org.uk/Research/Our-approach-to-research/



Which unfortunately confirms my worst fears. Your funding strategy is reactive, not proactive. That's appalling for an organisation that is supposed to be taking a leadership role.

Look, I get the whole point that universities research what is in their commercial interest. That's why I'm frankly horrified that Diabetes UK's research strategy is reactive. It is precisely because researchers are motivated by concerns beyond scientific discovery, that the leading charity for diabetes advocacy should be creating the conditions where the right diabetes research is of benefit to the researching university. I can think of several research questions off the top of my head that probably wouldn't be commercially interesting/deliver prestige to a uni in their own right but would be incredibly valuable for people with diabetes - and surely that's the reason we have a charity?

It's a really simple question: why isn't Diabetes UK leading and co-ordinating the UK diabetes research agenda? Why are we allowing private institutions with no particular stake in diabetes to effectively determine what gets researched?


----------



## Alba37

trophywench said:


> Thank YOU Hannah!  (Could you also ask if they could start with my surgery?  LOL)


I am aware of a number of clinics who do buy the Libre themselves and fund for some patients.... quite a number round the country.  So it's always good to ask at clinic and keep asking!


----------



## bilbie

Hannah M said:


> Our dietary advice is generally around healthy eating and balanced diets as its the most broadly beneficial diet and tends to be the option that people are likely to stick to long-term, however, saying that, we are fully supportive of _any_ diets that individuals find to be beneficial to them. If anyone wishes to follow a low carb diet that’s absolutley fine, we'd just advise discussing it with their GP in advance. The only issue is that we don’t yet know the long term results of low-carb, and that's why we're continuing to fund a low calorie diet study. People need to find a diet that they can stick to long term. There are an awful lot of ‘evidence based diets’ now, yet the vast majority of studies all suggest that healthy balanced diets are the most likely to be sustained. Essentially, we support whatever works for individuals, be that low carb, low cal, or Mediterranean to name but a few.
> 
> Hope that makes sense!



ADA goes a step further and as from 2013, actually recommends a Mediterranean diet as an effective alternative to a lower-fat, higher-carbohydrate eating pattern

ADA Position Statement
http://care.diabetesjournals.org/content/36/11/3821.full.pdf+html?with-ds=yes

*Fat *Evidence is inconclusive for an ideal amount of total fat intake for people with diabetes;
therefore, goals should be individualized; fat quality appears to be far more important than quantity.

In people with type 2 diabetes, a Mediterranean-style, MUFA-rich [mono fat-rich] eating pattern may benefit glycemic control and CVD risk factors and can therefore be recommended as an effective alternative to a lower-fat, higher-carbohydrate eating pattern.


*Carbohydrates*  Evidence is inconclusive for an ideal amount of carbohydrate intake for people with diabetes. Therefore, collaborative goals should be developed with the individual with diabetes.

The amount of carbohydrates and available insulin may be the most important factor influencing glycemic response after eating and should be considered when developing the eating plan.

Monitoring  carbohydrate  intake, whether by carbohydrate counting or experience-based  estimation remains a key strategy in achieving glycemic control.


----------



## Linda63

Hannah M said:


> 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.


Hi I would like to know if any 1 get red boil type marks on there body was just wondering if it was related to diabetes


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## SB2015

Hannah M said:


> at you may want to get in touch with your Regional Team - The managers know the groups in each area really well so they should be able to highlight any groups that are more focussed around type 1 or have more type 1 members, or any other things that may be happening at a more local level.


Hi Hannah
Although the regional offices may know about the local groups that does not magically create a group that is more focused on Type 1.  There may be T1 groups in large cities , especially university towns, but there are very few in the more rural areas, which is why like Amberzack, I am interested in DUK addressing the needs of adults with T1, as well as the needs for people up to the age of 30.


----------



## Copepod

Linda63 said:


> Hi I would like to know if any 1 get red boil type marks on there body was just wondering if it was related to diabetes


Welcome to the forum, Linda63. Youy'll probably get more answers if you start your own thread in Newbies or General Messageboard.


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## trophywench

SB2015 said:


> Hi Hannah
> Although the regional offices may know about the local groups that does not magically create a group that is more focused on Type 1.  There may be T1 groups in large cities , especially university towns, but there are very few in the more rural areas, which is why like Amberzack, I am interested in DUK addressing the needs of adults with T1, as well as the needs for people up to the age of 30.



SB - from somewhere or another - the Involvement Network I believe - I have only today received an email asking for T1s to volunteer to review some leaflets which are currently published and intended to assist Type 2 Peer Support Groups - but which have been changed so as to apply to Type 1 Peer Support Groups.

I've volunteered to do this - however I asked the question you are asking - I wasn't aware that such Type specific Groups ran for either Type !!

I'm not interested in starting one since I have channels in force that I've dug myself, should I need advice - and I'm not interested now in either running one or being an Officer (of anything, we both spent enough years doing that!)  but I would have found one useful had there been one available in my hours of need.  Instead I joined a forum, because there was no other choice open to me.  However - I might be able to support one locally if people need the type of questions answered that we answered here - and also to let them know they aren't alone or different - and get comfort from that alone.


----------



## Diabetes UK

DeusXM said:


> Which unfortunately confirms my worst fears. Your funding strategy is reactive, not proactive. That's appalling for an organisation that is supposed to be taking a leadership role.
> It's a really simple question: why isn't Diabetes UK leading and co-ordinating the UK diabetes research agenda? Why are we allowing private institutions with no particular stake in diabetes to effectively determine what gets researched?



Hi - The simple answer is that, we are leading and co-ordinating the UK diabetes research agenda and we do not allow private institutions to determine what is researched.

We have a mixture of strategic and non-strategic research proposals. For both types of submissions, only researchers who are based in NHS hospitals or Universities, within the UK can submit applications. Applications go through a rigorous screening process. Once submitted they are reviewed by both national and international experts in the field, before being screened by a Research Panel and our Grants Advisory Panel.  The general proposals we receive are non-strategic.

Strategic submissions occur when we invite researchers in a particular scientific field, to propose projects based on a certain area of research. We recently did this with the research into immuno-therapy.

To improve our approach to strategic submissions, we have developed a new structure and process to help us prioritise for these requests. This has been developed through the creation of our Clinical Studies Groups.  The groups have been broken down into different themes (see the framework diagram on our website). We are currently finding leaders in each field who will determine what the framework should be for each group. We're also recruiting Chairs and key members who will be expert clinicians or leaders in their field.  The groups will also include members of the public who are living with diabetes.  The groups will aim to find out what is already being researched in their field, what is not being researched, where the gaps are and thus what needs to be looked at.  These groups will help us to prioritise the most vital research in each area and will influence our future themed-strategic requests to researchers.

In addition to the development of the CSG's, we are working in partnership with the James Lind Alliance who oversee Priority Setting Partnerships and will help us to determine the Top 10 research priorities for the year. This information will be fed into the Clinical Study Groups to establish the top priorities in research. Combined with the CSG investigations, this will help in influencing future research. It will also help support the groups in obtaining additional funding from NIHR National Institute of Health Research, meaning more funding and better research!

We are continuously seeking the opinions and support of everyone to help us tell determine what needs to be researched and what changes need to happen. Please help us do this, through answering any surveys posted or evidence submission requests – you can get involved with our current request on our website here.

These surveys help our Research Team - but we look for your help and advice across the board - I will keep you all posted whenever there is a request out there


----------



## Diabetes UK

Hello - I have just some additional information from Anna Morris, our Head of Research Funding. Hopefully this will help to clarify things a little further around the way research is funded. 

_Many thanks for your enquiry. I am pleased to say that Diabetes UK is at the forefront of leading and co-ordinating setting of the diabetes research agenda and I will give some examples of what we are currently doing in this space.  I should say we do have a mixed approach to funding which does include our researcher led funding streams (all awarded to not for profit academic institutes such as hospitals and universities) but we also have a strategic approach to funding.

Over the years Diabetes UK has issued a number of strategic calls in specific areas that have been identified as priorities by Diabetes UK and our Science and Research Advisory Group (made up of people living with diabetes, healthcare professionals and researchers). To give a few examples, it is through this process that we awarded the study in Cambridge on the artificial pancreas, the trial in Glasgow and Newcastle on the low calorie diet for Type 2 remission and most recently the awards investigating a vaccine for Type 1 diabetes.

When we issued our new research strategy at the end of 2015 one of the things we committed to doing was increasing the voice of people with diabetes in our research funding programme and to take an even greater lead in setting the research agenda for diabetes. To do this we have initiated two new activities.

Firstly we will be setting up the first ever Clinical Studies Groups for diabetes. These groups will bring together people living with diabetes, healthcare professionals and scientists across a number of broad topic areas to identify the gaps in research that are holding progress back and the priority areas and studies that will move us forward more quickly. We will then use these priorities to influence our funding programme but also to influence other UK funders. You can read more about the groups here __https://www.diabetes.org.uk/Research/Our-approach-to-research/Clinical-Studies-Groups/_
_
In addition to setting up the Clinical Studies Groups we are also carrying out a Priority Setting partnership for Type 2 diabetes in association with the James Lind Alliance. This partnership (which takes the form of a nationwide survey followed by focus groups) will allow us to find the Top 10 research priorities for people with Type 2 diabetes, carers and healthcare professionals. The priorities are then used to influence those who work in universities and academic institutions, government agencies or in industry. Diabetes UK will use the priorities in the decisions it makes about how research is funded. You can read more about the process (and if you have Type 2 diabetes complete the survey) here: __https://www.diabetes.org.uk/Research/Our-approach-to-research/Have-your-say/Type-2-diabetes-Priority-Setting-Partnership/__This is the first time there has been a Priority Setting Partnership for Type 2 diabetes but there has been one for Type 1 diabetes and you can read about the outputs of that here __https://www.diabetes.org.uk/Research/Our-approach-to-research/Have-your-say/Type-1-diabetes-Priority-Setting-Partnership/_
_
I hope that this reassures you that we are active in setting the agenda for research in diabetes and committed to reflecting the views of people living with diabetes when we do so. If you’d like to discuss any aspect in more detail I would be very happy to do so.

Anna Morris, Head of Research Funding_


----------



## DeusXM

Thanks @Hannah M (and indeed, Anna too!) for clarifying - good to see that there is actually a proactive approach.

I would say though that is extremely disappointing that despite having 10 top priorities for T1 research, not one of these priorities is 'find a cure'. I don't disagree that the other things on the list such as closed-loop pumps could ultimately lead to a workable 'permanent' treatment of cure but I'm really quite worried about how much is spent on research aspects where the answer seems to either be very easy to answer as yes or no (seriously, you're still having to ask if pumps are a good idea? This argument was settled 20 years ago which is why they're frontline treatment in Europe and North America), and worst of all, there is no reference at all to a cure.

I note the priorities list states _'The priorities of people with Type 1 diabetes are very important to us, and we may review the current list of priorities in the next few years, to make sure that it’s still a true reflection. We're currently supporting work to answer a number of the priorities.' _I suspect if you ask anyone with T1 'what do you think is the most important thing to research in diabetes', none of them would say 'I would like to find out if people who are better trained are better at supporting with people with diabetes'. 

Each and every one of us is going to say 'I would like you to find out how to cure diabetes'. 

Just one of the research priorities for Diabetes UK in T1 is even tangentially related to finding a cure.

So my official feedback is, have as many priorities as you want. But don't forget that the absolute, non-negotiable, number 1 eternal priority is finding a cure.


----------



## trophywench

Yes - but Deus you have to appreciate that whilst people are looking for a cure - people MUST be assisted to live with the diabetes.  By all means find a cure (LOL) but please don't spend all your resources on that - cos 'I' need help NOW.  (not me actually, right at the mo, but there are millions of 'mes' aren't there?)

I wouldn't be at all happy if DUK were to say that's that - we'll pay scant attention to day to day issues despite knowing there are problems and difficulties arising all over the place - day to day - we are going the spend a LOT more of our income solely on a cure.

They also can't fund research for everything we need and want, ALL the time.  I'm blooming certain that finding a cure for T1 isn't most T2's priority!


----------



## DeusXM

trophywench said:


> Yes - but Deus you have to appreciate that whilst people are looking for a cure - people MUST be assisted to live with the diabetes.  By all means find a cure (LOL) but please don't spend all your resources on that - cos 'I' need help NOW.  (not me actually, right at the mo, but there are millions of 'mes' aren't there?)
> 
> I wouldn't be at all happy if DUK were to say that's that - we'll pay scant attention to day to day issues despite knowing there are problems and difficulties arising all over the place - day to day - we are going the spend a LOT more of our income solely on a cure.
> 
> They also can't fund research for everything we need and want, ALL the time.  I'm blooming certain that finding a cure for T1 isn't most T2's priority!



I appreciate that, which is why I said we should have other priorities too, but the #1 should always be the cure. At this stage it looks like Diabetes UK has zero interest or involvement in finding a cure. Also, this is the T1 research priority list, not the general priority list.


----------



## Matt Cycle

DeusXM said:


> I appreciate that, which is why I said we should have other priorities too, but the #1 should always be the cure. At this stage it looks like Diabetes UK has zero interest or involvement in finding a cure. Also, this is the T1 research priority list, not the general priority list.



I agree.  To my mind JDRF are doing the most - T1 specific research with the aim of finding a cure.


----------



## trophywench

Well you'd expect them to, else why are they called that!  LOL

DUK do not actually exist primarily for the purpose of research even, let alone for a cure!  They have to be all things to all men (women and children ......)


----------



## Diabetes UK

Thanks for your comments @DeusXM, there is really no denying the importance of finding a cure. It is one of the 3 main goals in the Diabetes UK Research Approach and is central to the entire Research Strategy.  These goals are what we adhere to when looking at all research proposals. The 3 goals are:
*Care:* Improve care and self-management for people living with diabetes today 
*Cure: *Find ways to cure diabetes in those who have it now or develop it in the future
*Prevent: *Stop diabetes and its complications before they develop in those at risk

There is no dispute that finding a cure is an essential priority, however, you may appreciate that it is important to continue to fund research in other areas as unfortunately, we cannot know how long it will take to find a cure.
All of this broadened research in diabetes care and prevention has helped develop things such as glucose monitors, insulin pens, insulin pumps, CGM's to name a few. The changes in diabetes technology have been huge over the years, and without continued research across different areas these advances would not have been achieved.  Curing diabetes has always been and will remain a key priority in research funding until it is achieved.


----------



## Diabetes UK

Matt Cycle said:


> I agree.  To my mind JDRF are doing the most - T1 specific research with the aim of finding a cure.



And yes absolutley, The JDRF (Juvenile Diabetes Research Federation) are a wonderful organisation, solely commited to funding research to cure, treat and prevent T1.


----------



## Diabeteshelper

Hi there. We really appreciate the work done by DUK, and fully understand that newly diagnosed adults and children with their families probably need most support. But does DUK hold care events for older Type1s and their carers? My 65 year old husband was diagnosed Type 1 over 30 years ago. He no longer gets warnings of hypos, suffers from increasing tiredness, and his eyes are well lasered.  I would love to share a day with older Type 1s and their carers...because that is my increasing role. Is there anything organised for us?


----------



## Chappy1234

I work on the front line in a busy office where I meet customers face-to-face on a daily basis.

On the 18th May 2016 at approximately 11:40am I did something inappropriate and my employers have disciplined me as a result.

I am appealing this ruling and by way of mitigation have said I was recovering from a hypo at the time.

At 10:39am my blood glucose level was 2.5mmol/l.

The hypo was treated by consuming four Marks & Spencer "Chocolatey Mini Bites". The nutritional information can be seen here:
https://www.caloriecount.com/calories-marks-spencer-extremely-chocolatey-mini-i72695

Can I ask you for an opinion; following a blood glucose reading of 2.5mmol/l and subsequent treating with the above mentioned product is it likely I would have fully recovered approximately an hour later or would my judgement / behaviour be impaired?

Any advice or opinion would be gratefully received.


----------



## Northerner

Chappy1234 said:


> I work on the front line in a busy office where I meet customers face-to-face on a daily basis.
> 
> On the 18th May 2016 at approximately 11:40am I did something inappropriate and my employers have disciplined me as a result.
> 
> I am appealing this ruling and by way of mitigation have said I was recovering from a hypo at the time.
> 
> At 10:39am my blood glucose level was 2.5mmol/l.
> 
> The hypo was treated by consuming four Marks & Spencer "Chocolatey Mini Bites". The nutritional information can be seen here:
> https://www.caloriecount.com/calories-marks-spencer-extremely-chocolatey-mini-i72695
> 
> Can I ask you for an opinion; following a blood glucose reading of 2.5mmol/l and subsequent treating with the above mentioned product is it likely I would have fully recovered approximately an hour later or would my judgement / behaviour be impaired?
> 
> Any advice or opinion would be gratefully received.


Did you test after eating the treatment? Did you test after the 'incident'? Much would depend on the hypo and reason for it - it's perfectly possible to have a hypo, treat it and recover, then suffer another hypo an hour later. I think it is highly unlikely you would have remained hypo for a full hour (after treating the 2.5) without being aware of it, and the rule is to test again after 15 minutes to ensure your levels have risen. As I said though, nothing to say you couldn't have dipped again - did you have any further treatment after the incident?


----------



## Diabetes UK

Diabeteshelper said:


> Hi there. We really appreciate the work done by DUK, and fully understand that newly diagnosed adults and children with their families probably need most support. But does DUK hold care events for older Type1s and their carers? My 65 year old husband was diagnosed Type 1 over 30 years ago. He no longer gets warnings of hypos, suffers from increasing tiredness, and his eyes are well lasered.  I would love to share a day with older Type 1s and their carers...because that is my increasing role. Is there anything organised for us?



Hi and thanks for your comment in this thread. You raise a really good point. The subject of care events for the growing adult demographic of those with T1 has been mentioned on this thread previously and it is something that is currently being reviewed for 2017 events. We have taken onboard this increased need for events for those over 30, however creating events for older Type 1s and their carers is something that hasn't yet been raised and so certainly something to be considered. Expanding care events to a wider range of age groups is something that we have seen a growing need for and we are grateful for any ideas and suggestions - the more feedback we recieve the better, so thank you again!


----------



## Diabetes UK

Chappy1234 said:


> I work on the front line in a busy office where I meet customers face-to-face on a daily basis.
> 
> On the 18th May 2016 at approximately 11:40am I did something inappropriate and my employers have disciplined me as a result.
> 
> I am appealing this ruling and by way of mitigation have said I was recovering from a hypo at the time.
> 
> At 10:39am my blood glucose level was 2.5mmol/l.
> 
> The hypo was treated by consuming four Marks & Spencer "Chocolatey Mini Bites". The nutritional information can be seen here:
> https://www.caloriecount.com/calories-marks-spencer-extremely-chocolatey-mini-i72695
> 
> Can I ask you for an opinion; following a blood glucose reading of 2.5mmol/l and subsequent treating with the above mentioned product is it likely I would have fully recovered approximately an hour later or would my judgement / behaviour be impaired?
> 
> Any advice or opinion would be gratefully received.




Hi, if you need any extra guidance in regards to your appeal against your employers decision, you may find this informaiton pack useful: https://www.diabetes.org.uk/Upload/How we help/Avocacy/Advocacy pack_EmploymentV3-Jan2016.pdf


----------



## SB2015

Hannah M said:


> Hi and thanks for your comment in this thread. You raise a really good point. The subject of care events for the growing adult demographic of those with T1 has been mentioned on this thread previously and it is something that is currently being reviewed for 2017 events. We have taken onboard this increased need for events for those over 30, however creating events for older Type 1s and their carers is something that hasn't yet been raised and so certainly something to be considered. Expanding care events to a wider range of age groups is something that we have seen a growing need for and we are grateful for any ideas and suggestions - the more feedback we recieve the better, so thank you again!


Hi Hannah
For older adults  who are diagnosed with T1, many of the needs are the same as for those that are younger adults.  Can you tell us what the programme has been for the 18 - 30 days.  It could then help us to identify where there are commonalities and also what needs to be different.  
From earlier conversations I know that at the 18 - 30 there is some emphasis on transitions from paediatric care to adult and also from college to work.  It may be that there is no need to reinvent the wheel but better to adapt it.  I am aware that for this year there was one event for all adults in London which unfortunately I was unable to attend.  What was the programme there.  How well did it work?  
Perhaps between us we can come up with some ideas.


----------



## Andrew David Lindsay

Hannah M said:


> 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.


Hi Hannah
I am very happy to chat here I hope you can help I have been reading that some blood glucose meter are now non compliant with current regulations I have a Freestyle Freedom Lite is this compliant.
Many thanks
Andrew Lindsay


----------



## Diabetes UK

SB2015 said:


> Hi Hannah
> For older adults  who are diagnosed with T1, many of the needs are the same as for those that are younger adults.  Can you tell us what the programme has been for the 18 - 30 days.  It could then help us to identify where there are commonalities and also what needs to be different.
> From earlier conversations I know that at the 18 - 30 there is some emphasis on transitions from paediatric care to adult and also from college to work.  It may be that there is no need to reinvent the wheel but better to adapt it.  I am aware that for this year there was one event for all adults in London which unfortunately I was unable to attend.  What was the programme there.  How well did it work?
> Perhaps between us we can come up with some ideas.



Absolutley - we would like to get some input during the planning process for the 2017 events so I will keep you updated. I will also come back to you in the next few days with some feedback from the adult event last month.


----------



## Diabetes UK

Andrew David Lindsay said:


> Hi Hannah
> I am very happy to chat here I hope you can help I have been reading that some blood glucose meter are now non compliant with current regulations I have a Freestyle Freedom Lite is this compliant.
> Many thanks
> Andrew Lindsay



Hi Andrew - did you get your meter through your GP or did you purchase it yourself? GPs should be ensuring that non-compliant meters are replced to compliant models. However, probably the best thing to do would be to call the manufacturer Abbot Diabetes Care on 0500 467 466 as they can clarify if your specific model is compliant.


----------



## Dizzy58

Dear Hannah, Is there any chance of DUK lobbying to get neuropathy recognised as a disability. I have had diabetes for forty two years and was the typical rebel teenager who could eat and drink what she wanted and never bothered about blood sugar levels. This carried on throughout  y twenties,thirties and fortiesand for a brief period of time ,in my fifties, l finally started to take diabetes seriously but l then fell ill with a uti that the medics failed to cure which has led to me being admitted nine times with sepsis. To cut a long story short l am claiming pip  but they refuse to accept that my neuropathy gets worse after each bout of sepsis  or that it even exists and causes me severe pain.l am in the process of investigating leg amputation and what the difference would be compared to the constant pain of neuropathy that l am suffering now. I am trapped inside my own little prison now that l cannot even have a mobility car.l have neuropathy and arthritis in my back so cannot just get into any car or taxi. I'll go now before l get too maudlin


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## Copepod

Welcome to the forum, Dizzy58. I'll leave @Hannah M to answer your question about PIP, but bascially PIP (like DLA in the past) is awarded based on how a person is affected by problems, not solely on the basis of a diagnosis. Qualifying periods means that a fluctuating condition is more difficult, but you can apply for supersession (review of an existing award). Unfortunately, many people who used to qualify for Higher Rate Mobility of Disability Living Allowance, do not qualify for Enhanced Rate Mobility of PIP, although physical and psychological / sensory issues can be combined to earn the required 12 points. You can use any PIP money towards paying for a car, insurance, VED etc, although you can only qualify for a Motability car is you get ERM of PIP.


----------



## Diabetes UK

Hi @Dizzy58 and welcome to the forum  - Thank you so much for sharing your story with us, you may wish to start your own thread in the Newbie section - there are some great folk on here who I'm sure would be happy to welcome you with a little more support and advice.

Thanks @Copepod for clarifying eligibility around PIP, you are right about the difficulties around fluctuating conditions. Unfortunately, the way that the eligibility is assessed with the PIP, it does not lend itself well to conditions such as diabetes.  @Dizzy58 - thanks for highlighting the issues around neuropathy as a disability.  I will look into whether this is something that has already been raised and if not, I will raise this concern for you. I will find out further details and ome back to you with more information.
There is an organisation called Turn2Us who provide advice and support around benefits and grants who you may find helpful: https://www.turn2us.org.uk/

On a side note, if you would like to talk with someone about neuropathy or amputations, you could call the Helpline on 0345 123 2399 (Mon - Fri, 9am-7pm) and go over these concerns with them.


----------



## HOBIE

I have volunteered at a few "Care Events" for T2 with Duk. They are good for people to attend & gain info !


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## mikeyB

There is no point in lobbying anyone with regard to "recognising" neuropathy as a disability. PIP Mobility payment is solely based on the ability to walk, with or without walking aids. It doesn't matter what is causing the disability, or what conditions are combining to cause the disability. If you can walk, with or without aids more than 10 yards then you will not qualify for the higher rate. If you can walk more than 50 yards, you will not receive the mobility award at all. It is as simple as that.

I know this because I have a purely motor neuropathy which has caused significant leg muscle weakness. I can walk more than ten yards with a stick for support, but for longer distances I have to use a wheelchair. I do not qualify for the higher rate mobility award, but receive the lower rate. Only the higher rate can be converted for use as a motability car lease. That doesn't prevent me from getting a "blue badge", though.

It is this specification of walking distance, that was not present in the old DLA rules, that has caused problems for people renewing their motability lease, and in converting from DLA mobility allowance to PIP.  The people who park their motability cars in the disabled spaces, then push their shopping trolley round Tesco are the main ones affected by this change, but there are people like me with quite severe walking impairment who now can't get the higher rate. This is an example of the government's push to target benefit payments on the really needy - that's what they say- but it's really to save money by making the rules so strict that the amount paid out is reduced without care for the disabled. 

But as I said, it doesn't matter what the diagnosis is, it's how it affects your walking ability. I've got neuropathy, but the DWP don't care, they just want to know if I can walk or not.


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## Copepod

The distances are 20 metres and 50 metres, not 10 yards and 50 yards. Repeatability, speed, safety etc are also considered. If a person has sensory (sight / hearing) / cognitive / psychological issues, points for these can be combined with physical difficulties for PIP, which wasn't possible for DLA.


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## mikeyB

Sorry, typo on the lower limit, but at these distances metres or yards is not a great difference. It is the imposition of fixed distances that is important. And you say repeatability, speed and safety are considered, but these parameters are not fully addressed in the structure of the questions on the application form, nor are they discussed in the assessment examination. They just don't ask the right questions to elicit such information. If they did, I would guess that far fewer people would fall through the net. And far fewer people would be successful at appeal.

I should add that I was a gatekeeper in benefits (military rather than civilian) before being an applicant in civilian benefits. I know the games that are played, and the government mindset.


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## Neety41

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? 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.


The gp practices could not afford to give every type 2 diabetic a machine! Its important for type 1s but i am afraid we type 2s should, rightly buy our own


----------



## Diabeticliberty

Neety41 said:


> The gp practices could not afford to give every type 2 diabetic a machine! Its important for type 1s but i am afraid we type 2s should, rightly buy our own




I think you might find that the very high possibility of significant life restricting complications associated with poor diabetic control are just as relevant to type 2 diabetics as they are to type 1's. With all of the diabetics that I personally know poor control and lack of effective testing are usually associated. If you do not give type 2's the chance to test by refusing to supply them with test equipment it is very short sighted as I believe you are storing up a great deal of financial burden for the health service in years to come. You are also storing up a very poor quality of life for diabetics afflicted by complications. To only have type 2 diabetics test themselves with the financial means to fund testing is cynical in the extreme. Being poorer should not mean you are not entitled to the very best health care that the state can provide


----------



## Donald

Neety41 said:


> The gp practices could not afford to give every type 2 diabetic a machine! Its important for type 1s but i am afraid we type 2s should, rightly buy our own


Not all of us type 2's can afford to buy the strips on a  month to month at £23 to £25 per pot


----------



## Ralph-YK

Neety41 said:


> The gp practices could not afford to give every type 2 diabetic a machine! Its important for type 1s but i am afraid we type 2s should, rightly buy our own


It's not just the not supplying meters or strips. It's the lack of support, information and guidance. Even the straight out discoragement of doing anything. Also, the cost is a problem for myself as i have little money.
Not testing, not having the help to do so effectively ad the active dismissal and discouragement damages our ability to manage our condition. It effectively prevents us from ever contoling our diabetes and makes it much more likely we'll just give up and just sit at home all day. Eating cake and biscuits.


----------



## Northerner

Ralph-YK said:


> It's not just the not supplying meters or strips. It's the lack of support, information and guidance. Even the straight out discoragement of doing anything. Also, the cost is a problem for myself as i have little money.
> Not testing, not having the help to do so effectively ad the active dismissal and discouragement damages our ability to manage our condition. It effectively prevents us from ever contoling our diabetes and makes it much more likely we'll just give up and just sit at home all day. Eating cake and biscuits.





Neety41 said:


> The gp practices could not afford to give every type 2 diabetic a machine! Its important for type 1s but i am afraid we type 2s should, rightly buy our own


I have to disagree with this. Test strips should not be prescribed will nilly, I do agree, but this should be decided on an individual basis, not a 'blanket ban' based on the assumption that the only reason you might need to test is if you are at risk of hypos, and that the information provided is useless otherwise - it is most definitely NOT useless. @Ralph-YK sums it up perfectly  

The sad fact is that, by not educating and supporting people properly, and providing the necessary tools (strips), GPs end up costing the NHS far, far more money in the cost of treating avoidable complications. 80% of the NHS diabetes 'bill' goes on the treatment of complications arising from poor control - and 80% of those are thought to be avoidable. The actual money spent on test strips is relatively insignificant when put alongside the costs of complications and increased medication costs - it is a false economy to restrict them and the savings are only very short-term and trivial. People with Type 2 who learn how to tailor their diet through BG monitoring do not need to test with high frequency once they have established what works well for them, so the notion that prescribing strips is a perpetual drain is also incorrect. As stated, not everyone can afford to fund themselves, but the whole logic of NOT providing strips on prescription to anyone wishing to self-monitor is flawed


----------



## Martin Canty

Northerner said:


> logic of NOT providing strips on prescription to anyone wishing to self-monitor is flawed


Agreed 100%..... I do test daily for my FBG but unless I've fallen off the wagon or trying something new I don't bother to test after eating. Latest A1c is 5.5% (as of last week) so I think I'm under control & that control is achieved _because_ I have the ability to test.


----------



## AlisonM

In an ideal world, we'd all be able to test as needed, but since this isn't an ideal world I'm of the opinion that T2s need to test, at least in the first year as they learn how to manage their condition. After that it may not be as vital, so long as they can test from time to time, or if they feel something is wrong. There are cheaper options out there for meters/strips, the SD Codefree that we suggest to newbies who are refused the gear is one option. 

I do appreciate the struggle though, it was the same for me before I was re-dx'd as Doctor Idiot refused me as well and I ended up buying my own strips off eBay. Which gave me fits in a moral sense as they may well have been resold by someone who wasn't using theirs. Beggars and choosers though, I did it because testing was essential for me and indeed, helped me prove my point about the treatments I was given - they didn't work well at all because of course I'm not actually T2, despite the doctor's assumptions.


----------



## mikeyB

When I was first mis-diagnosed as type 2 20 years ago, I was supplied with a a meter and test strips, which is how it was discovered fairly quickly that I was type 1. Maybe Northerner can help me out here, but that makes me think that this restriction on type 2s is of relatively recent introduction, (or at least within the last 20 years) and driven by economic consideration rather than medical. I agree with Alison, in the first year of a type 2 diagnosis, meters and strips should freely available, if only to spare those such as Alison or myself being misdiagnosed, and perhaps limited when a Type 2 condition is stable to use in intercurrent illness or other crisis.


----------



## Martin Canty

Interesting to note that here, in the States, I have no co-pay on my test strips (lancets I have to pay 100%, go figure, but almost 18mo in I still have a lifetimes supply!!!!).... I think that the insurance companies are more than willing to spend money up-front for preventative measures than pay down-stream due to complications. This also extends to blood screenings every 3 months.
It took me many years & a DX of Type 2 to actually really get preventative medicine as my culture was one of see the Dr. if you are unwell.


----------



## AlisonM

@Dizzy58, I'm getting PIP and it's not easy to do, but the main secret to it is to involve the CAB at the earliest opportunity and, when filling in the forms (also at the interview), describe your worst day. Don't over explain yourself, just state your worst case scenario and also try to take someone with you to the assessment. I found a site call YoureAble which has a wonderful forum full of useful information and support. It's part of the Shaw Trust which specialises in helping 'disabled' people with issues around health, work and benefits.


----------



## SB2015

Hannah DUK said:


> Absolutley - we would like to get some input during the planning process for the 2017 events so I will keep you updated. I will also come back to you in the next few days with some feedback from the adult event last month.



Hi Hannah

Just following up your earlier promise.  
Any news on the planning for 2017?
Any feedback from the adult events this year?


----------



## Ralph-YK

Which of these would people pick as having the most effect on BG
Multi grain hoops
ingredients: wholegrain flowers 79%, sugar, wheat start, invert sugar syrup, colours, caramel sugar syrup...
Carboydrate per 100g 75g
or
bitesize Wheat Shreds (Aldi Shredded Wheat)
Ingredients: whole grain weat 100%
Carboydrate per 100g 65g

I tested having both of these. My BG was the same for both.  Only self testing will tell us that.


----------



## Diabetes UK

SB2015 said:


> Hi Hannah
> 
> Just following up your earlier promise.
> Any news on the planning for 2017?
> Any feedback from the adult events this year?



Hi @SB2015  - absolutley, I will get some info and feedback from the Events Team and come back to you shortly


----------



## Diabetes UK

SB2015 said:


> Hi Hannah
> 
> Just following up your earlier promise.
> Any news on the planning for 2017?
> Any feedback from the adult events this year?



Sorry for the delay - I have recieved the evaluation from our Adult Event, held earlier this year - but it is a PDF document and I do not know how to upload it? perhaps @Northerner can help? If not, i would be happy to email it to you 

I can confirm that there will be two further adult events in November 2016, in Manchester and Peterborough, and we will be feeding a lot of the comments from the evaluation into our planning to help improve these events and ensure that attendees get the most out of them. These two events will help towards testing the design and content of the days and will feed into the planning for 2017. It is a big learning curve but hopefully, the events will continue to improve as we recieve more and more feedback.

Our Events Team have now submitted their 2017 plans and - pending final approval - hope to put on four adult events (18+ - no upper age limit) next year. The dates and locations are not set yet but it’s likely they'll be heading for large centres of population with a good geographical spread (so for example they could be looking at picking from cities such as London, Birmingham, Manchester, Nottingham, Newcastle, Bristol, Glasgow, Edinburgh, Leeds and so on). We are all really excited to have this opportunity to expand Diabetes UK events to a wider audience and hope that many people will have the chance to benefit from them.


----------



## Northerner

Hannah DUK said:


> I have recieved the evaluation from our Adult Event, held earlier this year - but it is a PDF document and I do not know how to upload it? perhaps @Northerner can help? If not, i would be happy to email it to you


If you click on 'Upload a File' - next to the 'Post Reply' button you can upload a pdf file to your post


----------



## SB2015

That is excellent news Hannah.  I am delighted to hear that the over 30s will now be welcome at the events.  I shall look out for the dates and really hope that I can make one of them, especially after having been asking for this for so long.


----------



## AlisonM

If there will be one in Glasgow or Edinburgh, I will make every effort to be there, unless it's the end of September, in which case I'll be off somewhere celebrating the big 6-oh.


----------



## Diabetes UK

AlisonM said:


> If there will be one in Glasgow or Edinburgh, I will make every effort to be there, unless it's the end of September, in which case I'll be off somewhere celebrating the big 6-oh.


Ooh congratulations! We'll keep you updated when everything has been finalised!


----------



## Diabetes UK

Northerner said:


> If you click on 'Upload a File' - next to the 'Post Reply' button you can upload a pdf file to your post



Thank you! I didn't see those buttons... 
Here is the evaluation.


----------



## Diabetes UK

mikeyB said:


> When I was first mis-diagnosed as type 2 20 years ago, I was supplied with a a meter and test strips, which is how it was discovered fairly quickly that I was type 1. Maybe Northerner can help me out here, but that makes me think that this restriction on type 2s is of relatively recent introduction, (or at least within the last 20 years) and driven by economic consideration rather than medical. I agree with Alison, in the first year of a type 2 diagnosis, meters and strips should freely available, if only to spare those such as Alison or myself being misdiagnosed, and perhaps limited when a Type 2 condition is stable to use in intercurrent illness or other crisis.



Apologies in advance for the essay....
Just thought I would come back to this comment - as you made a really good point with your experience, and I wanted to clarify a bit more around the current situation. The restrictions on strips & meters has been a concern for some time now but certainly something that has been an issue over more recent years. We saw an increase in incomig enquiries about this a few years ago, which prompted us to act. We've conducted three surveys in recent years to highlight the issue and had a great response from people. Its been really helpful for us to understand how far spread this issue is and we have taken opportunities to highlight the problem with national policy makers and politicians. However, it is difficult to address this at a national policy level as policies on test strips and meters are made at CCG (local health body) level and then these are applied differently from GP practice to practice. Three years ago we had a meeting in parliament (the APPG), which led to action from the Department of Health (the focus of this was predominantly around restrictions to those with Type 1 and stated that it was a false economy to restrict anyone with Type 1). Now, however, CCGs have more say over what they say should be prescribed locally. The points you have raised around Type 2 and that testing was beneficial in helping to realise a misdiagnosis is a valid one to raise, and has been passed to the team that work on this issue. The Diabetes UK position statement on Type 2 and self-monitoring recognises that people with Type 2 can benefit from self-monitoring of blood glucose and encourages it in a number of circumstances. 

Currently, we say that access to test strips and meters for people with Type 1 and Type 2 diabetes should be assessed on an individual basis and encourage people to challenge if what they are given doesn't meet their needs. When they do make their case, they can often be successful in obtaining the test strips they need.  We’ll will be publishing results from our most recent survey soon – but for now there is some information from previous surveys on the site if you are interested: https://www.diabetes.org.uk/About_us/What-we-say/Diagnosis-ongoing-management-monitoring/Access-to-test-strips-A-postcode-lottery/

The position statements about our current opinion on self-monitoring of blood glucose for people with Type 1 and Type 2 can be found here:
https://www.diabetes.org.uk/About_us/What-we-say/Diagnosis-ongoing-management-monitoring/Self-monitoring-of-blood-glucose-levels/
https://www.diabetes.org.uk/About_us/What-we-say/Diagnosis-ongoing-management-monitoring/Self-monitoring-of-blood-glucose-levels-for-adults-with-Type-2-diabetes/

We are currently looking at what more we can do to address the restrictions in access to test strips and meters that people with both Type 1 and Type 2 diabetes experience.


----------



## @Fractis

Hannah DUK said:


> We are currently looking at what more we can do to address the restrictions in access to test strips and meters that people with both Type 1 and Type 2 diabetes experience.



Hi Hanna,
One area that could be addressed by DUK is the NICE guidelines; the current guidelines are based on a single meta-review of the available evidence that is  badly flawed. The individual studies are very varied and have diverse methods, and some are not at all suitable;  for example, not all studies provided instructions on how and when to test and many offered no education about how to make use of the results. The frequency of testing varied also between 4 times a month (from which you can learn nothing) to 6 times a day (which is useful). A re-review of those studies that offered structured education and a suitably high frequency of testing would involve very little cost, and would almost certainly provide the evidance needed to support a more flexible guideline.

(I have written more about this elsewhere http://www.fractis.net/bobs-blog/2016/2/2/blood-glucose-testing-for-non-insulin-users)


----------



## SB2015

Hannah DUK said:


> Thank you! I didn't see those buttons...
> Here is the evaluation.


Hi Hannah

Thank you for sending the review through.  It is difficult when it is a very small sample of replies, but within those there are some useful elements of feedback for the planning of future events.

The issues of difference in age of delegates is, as pointed out, less relevant than length of diagnosis.  The feedback also suggests that it would be important to determine when it is better to work as a full group and when it would be better to have smaller groups, again mixed length of diagnosis or similar length of diagnosis.

There is some criticism of the chairing of discussions and also the professionalism of the event.  I have chosen not to attend some of the volunteer update events where the people leading them are simply delivering the package from DUK, rather than planning a day that is adapted to the mixed experience of delegates. 

I would be interested in having some input into the planning of events.  My background is in delivering training to adults, working with teachers with a wide variety of experience, and adapting the days to meet their individual needs.


----------



## Diabetes UK

@Fractis said:


> Hi Hanna,
> One area that could be addressed by DUK is the NICE guidelines; the current guidelines are based on a single meta-review of the available evidence that is  badly flawed. The individual studies are very varied and have diverse methods, and some are not at all suitable;  for example, not all studies provided instructions on how and when to test and many offered no education about how to make use of the results. The frequency of testing varied also between 4 times a month (from which you can learn nothing) to 6 times a day (which is useful). A re-review of those studies that offered structured education and a suitably high frequency of testing would involve very little cost, and would almost certainly provide the evidance needed to support a more flexible guideline.
> 
> (I have written more about this elsewhere http://www.fractis.net/bobs-blog/2016/2/2/blood-glucose-testing-for-non-insulin-users)



Thanks @fractis - yes, there are issues with the Type 2 NICE guidelines. We did try to influence these at the time and continue to seek opportunities to influence them going forward to get a better outcome. You make valuable points and I've raised them with the team that are working to push for better access and better gudlines.


----------



## @Fractis

Hannah DUK said:


> Thanks @fractis - yes, there are issues with the Type 2 NICE guidelines. We did try to influence these at the time and continue to seek opportunities to influence them going forward to get a better outcome. You make valuable points and I've raised them with the team that are working to push for better access and better gudlines.


Thanks Hannah, that's much appreciated. This is an issue where the patient/real world experience is so far removed from the guide lines it would be great to have some patient involvement in any lobbying.


----------



## Ibby

My diabetic nurse has told me to only test my bg 3 times a week I'm on gliclizide and linagliptin my hba1c is 48 and when I check my blood before meals is from about 7 in mornings to 5 at dinner sometimes 3.6 but I like to keep a check on them is that normal


----------



## Martin Canty

Ibby said:


> gliclizide


I wouldn't go anywhere without my meter if I were still on a sulfonylurea..... Too easy to get a hypo As for only testing 3 times a week, how on earth will you know whether you are in danger of a hypo or not!!!!


----------



## Northerner

Ibby said:


> My diabetic nurse has told me to only test my bg 3 times a week I'm on gliclizide and linagliptin my hba1c is 48 and when I check my blood before meals is from about 7 in mornings to 5 at dinner sometimes 3.6 but I like to keep a check on them is that normal


As Martin says, when you are on a medication like gliclazide you need to be able to test whenever you feel you may be dropping low, and you should ALWAYS test before driving to make sure you are safe to drive. 

It sounds like you are managing your blood sugar levels well, and your testing doesn't sound obsessive! As long as each test is giving you useful information, then it is not a wasted test, so just think carefully about what you hope to learn from the tests - will the information help you to improve your food choices, for example.

Please let us know if you have any questions


----------



## Hazel

I have read through this thread with great interest.
However, little or no mention has been made of the growing number of T2s on insulin or the fact the a a very large percentage of T2s will, without doubt, end up on insulin.
Please take note


----------



## Ibby

Martin Canty said:


> I wouldn't go anywhere without my meter if I were still on a sulfonylurea..... Too easy to get a hypo As for only testing 3 times a week, how on earth will you know whether you are in danger of a hypo or not!!!!


i agree you need to test its just my nurse said don't test as much as its expensive and makes your finger sore but it's not her life do most people check as much as me.i like to keep a check on how I'm doing so I know how I'm doing my


----------



## Diabetes UK

SB2015 said:


> Hi Hannah
> 
> Thank you for sending the review through.  It is difficult when it is a very small sample of replies, but within those there are some useful elements of feedback for the planning of future events.
> 
> The issues of difference in age of delegates is, as pointed out, less relevant than length of diagnosis.  The feedback also suggests that it would be important to determine when it is better to work as a full group and when it would be better to have smaller groups, again mixed length of diagnosis or similar length of diagnosis.
> 
> There is some criticism of the chairing of discussions and also the professionalism of the event.  I have chosen not to attend some of the volunteer update events where the people leading them are simply delivering the package from DUK, rather than planning a day that is adapted to the mixed experience of delegates.
> 
> I would be interested in having some input into the planning of events.  My background is in delivering training to adults, working with teachers with a wide variety of experience, and adapting the days to meet their individual needs.



Sorry for the delay  Thank you so much for your inciteful and useful feedback, I have some comments from our Type 1 Events Manager. He'd be delighed to get some further input from you, so I will convo you the contact details   In the meantime, her are his comments:
"We are really testing the water with adult events this year with a view to next year’s planned events which we are hoping to confirm very soon. The feedback from the London event has been very useful and we will be acting on some of this for the upcoming events in Peterborough and Manchester in November. The professionalism was an issue pointed out and so we’ve re-jigged the team so that I will be there to run the logistics of the day allowing the Event Organisers to be free to ‘roam’ as it were, allowing them to be free to get a real feel for what is working and what isn’t and also to chat and interact more freely with the attendees whilst I look after the logistics. We’re hoping that will ensure things run more to plan and timings and make the whole day more professionally run".


----------



## Diabetes UK

@Fractis said:


> Thanks Hannah, that's much appreciated. This is an issue where the patient/real world experience is so far removed from the guide lines it would be great to have some patient involvement in any lobbying.


Yes - please do get involved! You can get in touch with the Diabetes Voices team - they support people with individual campaigns and ask for support in finding evidence or gathering informaiton in a number of campaigns to improve diabetes care


----------



## SB2015

Hannah DUK said:


> Sorry for the delay  Thank you so much for your inciteful and useful feedback, I have some comments from our Type 1 Events Manager. He'd be delighed to get some further input from you, so I will convo you the contact details   In the meantime, her are his comments:
> "We are really testing the water with adult events this year with a view to next year’s planned events which we are hoping to confirm very soon. The feedback from the London event has been very useful and we will be acting on some of this for the upcoming events in Peterborough and Manchester in November. The professionalism was an issue pointed out and so we’ve re-jigged the team so that I will be there to run the logistics of the day allowing the Event Organisers to be free to ‘roam’ as it were, allowing them to be free to get a real feel for what is working and what isn’t and also to chat and interact more freely with the attendees whilst I look after the logistics. We’re hoping that will ensure things run more to plan and timings and make the whole day more professionally run".



Thanks for the info Hannah.  I have contacted Tim and look forward to hearing back from him.

Also, I think that this thread is an excellent idea and pleased that DUK are seeking information from those managing the condition day by day.  Thank you for all your work in this.


----------



## Diabetes UK

SB2015 said:


> Thanks for the info Hannah.  I have contacted Tim and look forward to hearing back from him.
> 
> Also, I think that this thread is an excellent idea and pleased that DUK are seeking information from those managing the condition day by day.  Thank you for all your work in this.



Thank you for your kind words - getting feedback and thoughts from the people who understand the condition the most, is a key part of the way we work. This thread has been really invaluable and is becoming a great portal to hear your ideas. I encourage you to continue sharing your thoughts, it does get filtered up and will be considered when developing future projects.


----------



## Matt86

Hi Hannah. I only joined the forum this week. And it is brill. I am still learning with my diagnosis last oct 2015. I wanted to ask that im aware that there are certain talks from Diabetes Uk but ive noticed that theae tend to be on week days. I like many would shifts so may be able ti go to one in week. Are there any on weekends as well? Thanks  ps if so where do i find a list of upcoming events.


----------



## Matt86

I ment work not "would" thanks.


----------



## Diabetes UK

Matt86 said:


> Hi Hannah. I only joined the forum this week. And it is brill. I am still learning with my diagnosis last oct 2015. I wanted to ask that im aware that there are certain talks from Diabetes Uk but ive noticed that theae tend to be on week days. I like many would shifts so may be able ti go to one in week. Are there any on weekends as well? Thanks  ps if so where do i find a list of upcoming events.



Hi matt - glad to hear your finding the forum so helpful. We run quite a few different events across the nations, can you confirm which talks you are referring to in particular? Do you have a link to a webpage maybe?  Thank you!


----------



## Matt86

Hi Hannah. Yes thanks im really finding it helping. I have not seen any links in the past. Just events advertised on notice boards etc. The talks were like for newbies who have been diagnosed.


----------



## Carol pettit

I have just joined this form in the last month was diagnosed Type2 diabetic last month.  It their any website / books etc that are useful to help explain diabeties to my children as they have loads of questions.


----------



## SB2015

Hi Carol

If you go to the the newbies section of the forum, there is a very useful link pinned to the top of the list with references to articles and books that are tried and tested.  They are separated into T1 and T2 son it is easy to pick out what you need.  If you have any questions just keep asking.  If it is on a specific topic try creating a new thread as people are mor likely to pick it up.  Don't worry if you get in a muddle as Northerner will come along and move things to a more appropriate thread if necessary and let you know why.  All very helpful.


----------



## Carol pettit

Thank you so much for the reply SB2015. . I will have a look at the newbie section. It's hard for me to get my head around let alone my 2 kids. !! But I have read some great advice from this site and it has helped a lot .


----------



## Diabetes UK

Carol pettit said:


> Thank you so much for the reply SB2015. . I will have a look at the newbie section. It's hard for me to get my head around let alone my 2 kids. !! But I have read some great advice from this site and it has helped a lot .



Hi Carol, welcome to the forum  - there is lots of great advice from folk on the forum and the newbie section to support you. 
A lot of the information that is available for children on the Diabetes UK website is aimed at helping children to understand Type 1 diabetes, which would not quite be relevant in them understanding your condition. There are a lot of resources, including story books (Lily Diabetes made a great one in partnership with Disney) and videos, however, if you do not manage your diabetes with insulin, and you are Type 2, the informaiotn could be misleading. 
Something that I thought may be helpful is the below video, which explains the differnce between Type 1 & Type 2 diabetes - although I suppose it may depend on the age your children. You raise a good point though, perhaps something for us to look into 
https://www.diabetes.org.uk/Guide-to-diabetes/What-is-diabetes/Diabetes-and-the-body/


----------



## Diabetes UK

Matt86 said:


> Hi Hannah. Yes thanks im really finding it helping. I have not seen any links in the past. Just events advertised on notice boards etc. The talks were like for newbies who have been diagnosed.


So sorry Matt - I never got back to you on this! It sounds like there's perhaps some events locally to you if you have seen details on notice boards? The best thing to do is contact your Regional Office as they will know what is happening in your area. Depending on what part of the country your based in, you can find contact details on the website . If you select your region, you can also view 'Local Groups' and see if there's one listed near you, as often Local Groups hold events as well.


----------



## Tashaa1234

I would like to ask for my dad, who has recently been diagnosed with type 2 diabetes, whether there is an NHS service for him to help him manage his diabetes, medicines, lifestyle and get his checks done all at once. He is working 9-5 everyday, so he would rather not come in on many different occasions, as he does not want to take a day off work. If there isn't a service that encompasses everything, what different services are there available to him?


----------



## Diabetes UK

Tashaa1234 said:


> I would like to ask for my dad, who has recently been diagnosed with type 2 diabetes, whether there is an NHS service for him to help him manage his diabetes, medicines, lifestyle and get his checks done all at once. He is working 9-5 everyday, so he would rather not come in on many different occasions, as he does not want to take a day off work. If there isn't a service that encompasses everything, what different services are there available to him?




Hi Tasha and welcome to the forum  - I would recommend starting your own Thread to allow other members to respond and share their experiences. However, I can confirm that there are courses available through the NHS which cover all aspects of diabetes management as you've mentioned. Services will vary depending on your local area but your dad can make enquiries through his health care team. The main two courses for Type 2 Diabetes are DESMOND and X-PERT. There are also online learning tools if he finds it difficult to fit the course around his working hours - details of all course options here.


----------



## 2Bornot2B

Still confused,
I attended the diabetic clinic for the first time yesterday, 
The trained nurse gave a very in depth explanation about the condition and how it affected the body.
She was followed by two  dieticians who explained what food we should eat.
The contention was, NO FOOD IS FORBIDDEN, cereal, bananas, bread, small slice off cake is OK, BUT MODERATE THE PORTIONS. Fresh fruit juice is OK.
Diabetic food is a NO NO. So having changed my  diet, I now find I was eating all the right foods all along.


----------



## trophywench

Hi Bornot

Everyone's own tolerance for any food will be different to the next person's - you have to treat your body as an experiment and learn by results.

What results? - the results shown to you on the screen of your own blood glucose monitor after eating whatever food or drink you want to test.

I personally wouldn't dare eat a whole banana for instance or mine would be nearer 20 than the 5-ish of a non diabetic - and as they don't keep after being unzipped I simply haven't bought any for nearly 40 years!  My late mother in law, a T2 was exactly the same.  Half an apple or pear though will only increase my glucose by about 3 - but I still can't eat it without jabbing extra insulin for it.

Neither of us would have known that (other than both feeling lousy after eating them) without testing.


----------



## Northerner

2Bornot2B said:


> Still confused,
> I attended the diabetic clinic for the first time yesterday,
> The trained nurse gave a very in depth explanation about the condition and how it affected the body.
> She was followed by two  dieticians who explained what food we should eat.
> The contention was, NO FOOD IS FORBIDDEN, cereal, bananas, bread, small slice off cake is OK, BUT MODERATE THE PORTIONS. Fresh fruit juice is OK.
> Diabetic food is a NO NO. So having changed my  diet, I now find I was eating all the right foods all along.


As Jenny suggests, it is only through testing that you can determine your own particular tolerances for things. Please have a look at Test,Review, Adjust by Alan S to understand how this works  Tolerances can vary widely from person to person (it's thought our own individual gut bacteria, unique to each one of us, may be a strong factor in this), so there simply is no 'one-size-fits-all'. It would be better to say _*you can eat anything you tolerate well, always in moderation*_  

The dietician was correct about 'diabetic' food - it contains sweeteners that can cause gastric upset, and most contains just as much carbohydrate as the 'real stuff', so there is no benefit from eating it in preference


----------



## robert@fm

Northerner said:


> The dietician was correct about 'diabetic' food - it contains sweeteners that can cause gastric upset, and most contains just as much carbohydrate as the 'real stuff', so there is no benefit from eating it in preference


Plus the fact that, as with "organic" food (seriously, is there any food which _doesn't_ contain carbon?), the label is mainly an excuse to charge a premium price.  The real thing is not only healthier, it's usually cheaper.


----------



## ChrisSamsDad

Northerner said:


> As Jenny suggests, it is only through testing that you can determine your own particular tolerances for things. Please have a look at Test,Review, Adjust by Alan S to understand how this works  Tolerances can vary widely from person to person (it's thought our own individual gut bacteria, unique to each one of us, may be a strong factor in this), so there simply is no 'one-size-fits-all'. It would be better to say _*you can eat anything you tolerate well, always in moderation*_
> 
> The dietician was correct about 'diabetic' food - it contains sweeteners that can cause gastric upset, and most contains just as much carbohydrate as the 'real stuff', so there is no benefit from eating it in preference



Well, I'm not sure that's exactly right. The sugar alcohols do contain carbohydrates , which contain calories, but they're not digested well - it does differ for individuals, but as I understand it, you might only metabolise a small proportion of those carbs - the rest goes into the lower gut where it ferments causing those gastric upsets you mentioned. I personally find I can tolerate many of them well and they don't cause too much trouble and don't spike my BG. Erythritol in particular I've had great success with for baking, and I've not had any bowel problems. Again, I think if you tolerate it, eat it in moderation.


----------



## ChrisSamsDad

robert@fm said:


> Plus the fact that, as with "organic" food (seriously, is there any food which _doesn't_ contain carbon?), the label is mainly an excuse to charge a premium price.  The real thing is not only healthier, it's usually cheaper.


But, Carbon is a chemical - are you saying it contains _chemicals??? _I've heard they're really bad for you, the sheeple need to be told.


----------



## robert@fm

Salt, sugar and water are also all chemicals, so it's probably too late.


----------



## DeusXM

> The sugar alcohols do contain carbohydrates , which contain calories, but they're not digested well - it does differ for individuals, but as I understand it, you might only metabolise a small proportion of those carbs - the rest goes into the lower gut where it ferments causing those gastric upsets you mentioned.



I find that for me, sugar alcohols effectively convert gram for gram as if they were sugar in the first place AND cause upsets, giving the worst of both worlds.

Interestingly, the upset I get isn't the dreaded laxative effect, it's something far, far worse....


----------



## Maggie C.

Hannah DUK said:


> 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.



Hi Hannah - feeling a bit silly, as - I can't remember (dunno why...) if I should book a GP appt, after my 6 monthly check -up if all was fine...?


----------



## Diabetes UK

Maggie C. said:


> Hi Hannah - feeling a bit silly, as - I can't remember (dunno why...) if I should book a GP appt, after my 6 monthly check -up if all was fine...?



Hi Maggie, welcome to the forum  - Not silly at all!  Whether your previous results were fine or not, you should ensure that you're getting checks in relation to your diabetes, each year. The checks should be done as a minimum, on an annual basis. If you're referring to the HbA1c blood test, some practices may favour doing this every 6 months or more, if they feel its necessary for the individual. It might be best to check with your practice what their process is, if they do them annually, maybe you can arrange your next appointment in advance now?
Either way, even if all is fine, still good to keep getting your diabetes check-up


----------



## Rhapsody

Can anyone please help me out.  I have several recipes calling for 'almond flour'.  However, none of the supermarkets I visited have any.  Checking for supplies on line there is an article saying why almond flour/almond meal is not good!  They go on to list 5 good reasons why you should avoid it.  I am about to do some baking for myself for Christmas and four of the recipes call for this or coconut flour.  I have bought coconut flour so should I just use this instead ..... how will it affect the result?


----------



## Diabetes UK

Hi @Rhapsody - welcome to the forum! 
You may be best starting your own thread by going to General Messages and 'Post New Thread' - more people will see your question listed and you will hopefully get more of a response from everyone 
Perhaps it something for the Diabetes UK 'Enjoy Food' team - whether almond flour or coconut flour work well as baking substitutes? I will put it to them and see if they have any input on the subject...


----------



## Rhapsody

Hannah DUK said:


> Hi @Rhapsody - welcome to the forum!
> You may be best starting your own thread by going to General Messages and 'Post New Thread' - more people will see your question listed and you will hopefully get more of a response from everyone
> Perhaps it something for the Diabetes UK 'Enjoy Food' team - whether almond flour or coconut flour work well as baking substitutes? I will put it to them and see if they have any input on the subject...


Thanks Hannah.  Will do and see what I can learn.  It's very frustrating for me at this stage .... grrrrrrr


----------



## Jen A

Hi all, Wondered if someone can help.  I'm a T1D for the past 34 years, have a 15 month old little girl and am struggling with my energy levels.  I have been to see the specialist nurse at the hospital and apart from today my blood sugars have been so so.  A friend has recommended to me to take bee propolis capsules to give me the boost I need and I'm not really sure whether I should take them.  I'm getting desperate as I'm constantly feel drained, even though I know children are hard work.   I even went to the doctor to get a full blood test, just to make sure and it was fine.  Any ideas anyone?


----------



## trophywench

I've no idea whether it can possibly help or not but bee products are not normally harmful to human health - ooh apart from the sting of course LOL - and certainly Manuka honey does have excellent 'healing' properties - it is used clinically at some hospitals to aid healing of eg diabetic leg ulcers - but applied EXTERNALLY in that case, LOL

I haven't actually heard anything about the propolis capsules apart from what's on the interwebnet, so can't give any help there.  But if they aren't silly money and nothing anywhere you can Google suggests they are iffy - why not do a clinical trial on yourself!

Rhapsody - almond flour isn't sold as 'flour' - because it is simply described as Ground Almonds and yes it's always scarce at this time of year because people still make marzipan with it !!  Usually Aldi and Lidl have it at the best prices.  I've not cooked with coconut flour so I dunno if you can swap them in recipes.  I've never ever heard that one shouldn't consume ground almonds - whole ruddy almond are really good for us so why would them ground up be different? - although obviously if anyone does have a Nut allergy they mustn't consume anything with them in - including traditional Xmas or Wedding etc cake with marzipan under the icing!


----------



## Diabetes UK

Hi Jen. Things do sound difficult. There are, however, many reasons why you may feel like you lack energy. Your diabetes, the little one, lack of sleep and your diet are all contributing to this fatigue – not to mention other possible reasons which I hope your doctor has been looking into. After 34yrs of type 1, I am sure you are well aware on what you need to do to get the control to stop feeling so tired. High fibre low fat diet can help to give you a little more energy in your day to day routine as too will a sound sleeping routine. Many ‘energy’ supplements have little evidence to them and can sometimes cause BG to go up and should only be taken if discussed with your doctor or DSN. Don’t forget our Helpline staff are at the end of the phone should you need them on 0345 123 2399.
If you would like some further advice or experiences from our lovely Forum members, it may also be a good idea to start your own thread by going to General Messages and 'Post New Thread' where more people will see your question.


----------



## Kateita

I am quite new to Diabetes, I knew I have type 3 only few days ago. I started Metformin 500. I have been taking Sertraline for almost 6 years and now I am in the process of reducing the drug (I was on 125 and slowly I arrived now to 25). Are there interaction between the two drugs?


----------



## trophywench

I'm only a patient not DUK.

Err Dibbles - could I simply enquire whether it's compatible with all NHS GP surgery computer ordering systems (EMIS and the other ones used) and the EPA scheme?


----------



## Ljc

Kateita said:


> I am quite new to Diabetes, I knew I have type 3 only few days ago. I started Metformin 500. I have been taking Sertraline for almost 6 years and now I am in the process of reducing the drug (I was on 125 and slowly I arrived now to 25). Are there interaction between the two drugs?


Hi Kateita, Welcome .
I don't know of any interaction between Sertraline and Metformin, others here may know. Are you having any symptoms you think might be due to an interaction. 
If you post a thread on the general forum you will receive many more replies
https://forum.diabetes.org.uk/boards/forums/general-messageboard.2/


----------



## Kateita

thanks a lot


----------



## Copepod

Kateita said:


> I am quite new to Diabetes, I knew I have type 3 only few days ago. I started Metformin 500. I have been taking Sertraline for almost 6 years and now I am in the process of reducing the drug (I was on 125 and slowly I arrived now to 25). Are there interaction between the two drugs?


For questions about medication, it's best to ask a pharmacist, as they're the experts. In the meantime, you could look at the patient information leaflet supplied with both medications, where interactions are usually listed.


----------



## Kateita

Copepod said:


> For questions about medication, it's best to ask a pharmacist, as they're the experts. In the meantime, you could look at the patient information leaflet supplied with both medications, where interactions are usually listed.



Thank you! I have another general question as I am so new to all this. Is it normal while starting Metformin to feel bad at night? before sleeping? I a mean very weak and headache? It might be also due to the fact that I changed my diet and I eat less.


----------



## Copepod

Kateita said:


> Thank you! I have another general question as I am so new to all this. Is it normal while starting Metformin to feel bad at night? before sleeping? I a mean very weak and headache? It might be also due to the fact that I changed my diet and I eat less.


Can I suggest that you ask this question on the other thread you have started? It would be easier than getting mixed up with other queries.


----------



## Diabetes UK

Kateita said:


> Thank you! I have another general question as I am so new to all this. Is it normal while starting Metformin to feel bad at night? before sleeping? I a mean very weak and headache? It might be also due to the fact that I changed my diet and I eat less.



_Hello - welcome to the forum! As people have said, it might be better to start your own thread by going to General Messages and 'Post New Thread' - more people will see your question listed and you will hopefully get a bigger response from everyone _


----------



## Diabetes UK

Dibbles said:


> I've just invented a Diabetic Repeat prescription, for your mobile with no need for an app!!!!!!!!!!!!!!!!!!  ;-) I hope this will be of some use to us diabetics! Anyone interested in a trial please feel free to ask me. I've only tested on an Android Note 4!  sorry if you have an iphone! Even though it might work on that too!
> The Prescription as dropdowns and tick boxes!
> Can Diabetic UK  help me further this project.



Hi Dibbles. If you are looking for some support or endorsement from Diabetes UK, you can fill out the form on the webpage here: https://www.diabetes.org.uk/mhealth-enquiry. This will go to the correct teams to assess


----------



## accountremoved001

Hannah DUK said:


> Hi Dibbles. If you are looking for some support or endorsement from Diabetes UK, you can fill out the form on the webpage here: https://www.diabetes.org.uk/mhealth-enquiry. This will go to the correct teams to assess


Thank you so much for this link!   ;-)


----------



## suzanne53

Hannah DUK said:


> 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.


Hi im new to the forum so hi, just a silly question, this evening I cant remember if I have taken y metformin or not any advice please.


----------



## trophywench

None as  far as tonight is concerned, sorry.

I suggest you get a pill organiser thing from the pharmacy with days of the week on, and every eg Sunday, you divide the following week's pills up into the little compartments.  So now, you'd be able to see if there was still one resident in the 'Friday' slot.


----------



## 1947David

just wanting to ask  the levels of blood sugars taken  is a reading of 15 .4  high and what should I do to get it down  and is a reading of 6 to 8 ok is 4 to low and what shell I do .  many thanks  new to all this  David


----------



## Copepod

1947David said:


> just wanting to ask  the levels of blood sugars taken  is a reading of 15 .4  high and what should I do to get it down  and is a reading of 6 to 8 ok is 4 to low and what shell I do .  many thanks  new to all this  David


Welcome to the forum 1947David. Can I suggest that you start a new thread in either Newbies or General Messageboard, so that you get more replies.


----------



## 1947David

I am new to diabetes don't really understand  testing blood levels  what is high and what is low and what to do to correct it  my average readings are 6.4  to 8. 7  and  I have some low levels of 4.6 and highs of 15.2 these readings are very rare ,   a high and low blood sugar chart would be very handy to check levels on  so one knows what to do to correct things.  regards  Dave


----------



## Rhapsody

Hello 1947David.  I know just how you feel.  I was diagnosed in Nov 16 and didn't ask all the questions I should have, declined a visit to the dietitian which I now wish I hadn't.  However, the nurse initially told me to keep my readings in single figure but not to panic if I had the odd blip going over into double figures. I was told not to go below 4!  I was very good in the beginning, in fact paranoid, but managed to keep around 4.5 - 6.5.  I've been doing a no carb/low carb diet although have the odd cheat but I'm finding this gives me more and more headaches.  I've tried various yoghurts and am now eating weight watchers because I'm trying to lose weight as well.  Reading the carbs on packaging and understanding them is frustrating but I'm due to see the nurse in two weeks and will be asking her to refer me to the  dietitian.  I hope she does after me declining in the first place.  After 3 months of testing etc I have a lot of questions to ask.  I was given a meter in the beginning, I'm still testing every day because I'm not comfortable with foods that may or not push me up so here's hoping for a 'friendly' reception from the nurse!  I also want to know whether the gluten free foods are good, there seems to be an abundance of them around but the carbs still look high to me.  So, as novice and judging by what I was initially told, your levels look good but I am no expert!  I'm on Metformin 500x4 daily and since going onto the full dosage, my levels are up around 5.8 - 6.5.  Sorry such a long note but I hope it helps a bit.


----------



## 1947David

Hi Rhapsody  Thanks for your kind reply   We seem to be about the same Weight loss exercise Reading carbs on packets  ,  I wish I could find  somewhere that lets me know what to do in the case of low /high sugar readings will have to se my Diabetes nurse  I am also on 500x4 Metformin
have you noticed any side affects from them .

Well all the best to you and thanks for your interesting letter. 

Regards  Dave


----------



## trophywench

Dave - this might help you

http://loraldiabetes.blogspot.co.uk/2006/10/test-review-adjust.html

No good simply testing - unless we review the result and adjust either the food, the amount of it, or something else depending on the particular circumstances.


----------



## Rhapsody

1947David said:


> Hi Rhapsody  Thanks for your kind reply   We seem to be about the same Weight loss exercise Reading carbs on packets  ,  I wish I could find  somewhere that lets me know what to do in the case of low /high sugar readings will have to se my Diabetes nurse  I am also on 500x4 Metformin
> have you noticed any side affects from them .
> 
> Well all the best to you and thanks for your interesting letter.
> 
> Regards  Dave


Hi Dave.  I can't say I've noticed significant side effects although perhaps I might mention the headache situation to the nurse.  I keep putting things down to changes of meds because I'm also on blood pressure meds and sometimes I do wonder if all this stuff I'm putting into my system actually all agrees with each other.  I sincerely hope they read my meds before adding others on (I'm sure they do) but everyone reacts differently to changes.  I do also read packaging for sugar as well as carbs but luckily I don't have that much of a sweet tooth.  The odd binge doesn't go amiss!!  Cheers


----------



## 1947David

Hi    thanks for your message  stay safe good luck


----------



## Chris cov

Hannah DUK said:


> 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.


Hi l was newly diagnosed July l don't test with a meter there must be lots of people who don't loss weight and am on metformin what's your take on this


----------



## trophywench

It's not just about weight Chris, so don' let the hype fool you.  Unless you happen to be a suspect due to genetic factors, you can be morbidly obese without automatically becoming diabetic - or thin as a lath naturally and run marathons etc - and still get it!

We might not know of any family history of diabetes.  However - my paternal grandma died when my dad was about 12 in about 1930 allegedly of heart failure.  OK, so what actually caused her heart to fail, at a relatively young age, then? is a question I've been asking myself ever since 1972 !


----------



## Wirrallass

Thank you Hannah to you & your colleagues for all the help, advice & support given on the forum. It is appreciated. I find reading other forum members messages interesting too because they discuss matters that haven't 't even entered my head! So I've been enlightened as to some other aspects re: T2. So thank you too peeps. Since being diagnosed last April I haven't really accepted it but I have addressed my diet & exercise regimes for my own good. Is it a psychological thing because i can't see the disease as opposed to say, a broken limb? I wasn't particularly concerned about my weight but nevertheless made an effort and so I've lost a stone & a half & dropped two sizes. Yeah!  My family are concerned that i don't  lose any more weight, bless them. My last review HbA1c - 47. BGLS fluctuate between 4.2 - 7.1 but I am aware as to why...I have a penchant for tirisamu & skinny latte (not at the same time tho!) & which I try not to indulge myself too often. My sweet tooth is having a horrible time being denied all sweet food & liquids ah poor tooth! But on a positrive note, I am doing my best to keep within the boundaries of diabetes & do try not to berate my self too much if I exceed them now & then. Enough of me, thank you for listening. Take care


----------



## mikeyB

Wiralass, you are doing a grand job. There are folk on here (including myself) who would kill for your HbA1c and BG scores. If you can get those numbers when you treat yourself occasionally, you've got this lark nailed


----------



## Wirrallass

mikeyB said:


> Wiralass, you are doing a grand job. There are folk on here (including myself) who would kill for your HbA1c and BG scores. If you can get those numbers when you treat yourself occasionally, you've got this lark nailed


Thanks mikeyB for your encouraging words. Doing my best seeing that I don't currently take metformim. My GP first prescribed glucophage metformin but after going through the rigmarole of gradually increasing tablets for six weeks I consulted my GP coz of the housebound side effects! So I was put on sukkarto Sr. That med had the same effect. So GP said stay off them for a while & this is where I am atm. Sometimes I wonder if I am diabetic at all or if I have reversed my diabetes, if that's possible. 

Whilst writing, I'd like to mention that I went on line to research Turmeric and Curcumin which has anti-inflammatory properties. (www.healthdiaries.co) and (www.m.wedmd.boots) Interesting reading. Both touch on the subjects of diabetes; prostrate cancer + more. I regularly add Turmeric & always black pepper to whatever I am cooking or sprinkle some over a salad for example. Research has found that consuming black pepper with Curcumin increases it's bioavailability. 

What I also learned was that a study found that Curcumin may prevent or slow down the progression of Alzeimers disease and dementia by removing amyloid plaque build-up in the brain.I sometimes think I am losing my marbles as my forgetfulness lately is just driving me barmy Haha! I.e. when I can't recall a name (but later it does comes to mind) or can't remember what I went into another room for or have a mental block during conversations which I call having a senior moment !!  I'm sure I'm not alone. I'm getting eye strain typing hope you're not ditto while your reading.! Time to end this epitaph.! Take care.


----------



## @Fractis

wirralass said:


> Whilst writing, I'd like to mention that I went on line to research Turmeric and Curcumin which has anti-inflammatory properties. (www.healthdiaries.co) and (www.m.wedmd.boots) Interesting reading. Both touch on the subjects of diabetes; prostrate cancer + more. I regularly add Turmeric & always black pepper to whatever I am cooking or sprinkle some over a salad for example. Research has found that consuming black pepper with Curcumin increases it's bioavailability.



It is worth pointing out that the vast majority of these studies are in rats or mice, and there is very little evidence
A systematic review of the evidence in the US concluded "studies are badly needed to be done in humans", so let's not get our hopes up or let this stop us form doing what we really need to do to manage the condition well.


----------



## Wirrallass

1947David said:


> Hi Rhapsody  Thanks for your kind reply   We seem to be about the same Weight loss exercise Reading carbs on packets  ,  I wish I could find  somewhere that lets me know what to do in the case of low /high sugar readings will have to se my Diabetes nurse  I am also on 500x4 Metformin
> have you noticed any side affects from them .
> 
> Well all the best to you and thanks for your interesting letter.
> 
> Regards  Dave



Hi 1947Dave. Diabetes & blood glucose levels (bgl) are a pain i know. It might help if you could attend a Diabetes Management Programme. Is there one being held in your area? When I was first diagnosed I was referred to a 6wk course. 4hrs once a week. My diabetes nurse referred me. I found it both interesting & enlightening. You would also meet like diabetics both type1 and type2.. Good luck & take care.

Wirralass.
T2 since April 2016.


----------



## silentsquirrel

Manisha Patel said:


> Hi All,
> 
> I am currently writing a research paper on how the use of technology lacks in the medical space for patients. I am particularly focusing on how the adoption of recent technology can be implemented to improve the convenience for diabetic patients when obtaining repetitive prescriptions. I would really appreciate it if you could complete the following survey: https://www.surveymonkey.co.uk/r/8NS255S
> 
> Look forward to your responses.
> 
> Thanks in advance,
> 
> Manisha


Hi Manisha, and welcome to the forum.  You do need this to be approved by Admin first - I expect @Northerner will be along in the morning to advise!


----------



## Wirrallass

suzanne53 said:


> Hi im new to the forum so hi, just a silly question, this evening I cant remember if I have taken y metformin or not any advice please.



Welcome to the forum suzanne53, ditto trophy wrenches reply. I have a tablet organiser, if I didn't have that I'd be in the same boat as you! Take care.
Wirralass, T2 since April 2016,


----------



## Wirrallass

Kateita said:


> thanks a lot


Welcome to the forum Kateita
Wirralass


----------



## Northerner

silentsquirrel said:


> Hi Manisha, and welcome to the forum.  You do need this to be approved by Admin first - I expect @Northerner will be along in the morning to advise!


I have contacted Manisha, thank you for bringing this to my attention


----------



## Wirrallass

Hi peeps! Hope this isn't considered a silly question but I heard that diabetics can eat dark chocolate! I was amazed to hear this. Is this true or definite no-no?

Type2 since April 2016


----------



## robert@fm

wirralass said:


> Hi peeps! Hope this isn't considered a silly question but I heard that diabetics can eat dark chocolate! I was amazed to hear this. Is this true & if so when should/could it be eaten or is it a definite no-no?


Enter "chocolate" in the search box at the top right of any forum page, or into the Advanced Search (or Search Tags — yes, the tag "chocolate" has been used a few times) page, and behold what comes up in the search.


----------



## Paula Maddison-Green

Hannah DUK said:


> 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.


----------



## Paula Maddison-Green

Twice in one day!

If there are forum members out here that live or know anyone around in the Sheffield area that would like to attend our Free Diabetes UK Putting Feet first Event at the Mecure Hotel on Valentines Day, please click here and see our agenda with details of how to register!

https://www.diabetes.org.uk/In_Your_Area/Northern__Yorkshire/Regional-news/Free-foot-care-event-for-people-with-diabetes-in-Sheffield/


----------



## Diabetes UK

wirralass said:


> Thank you Hannah to you & your colleagues for all the help, advice & support given on the forum. It is appreciated. I find reading other forum members messages interesting too because they discuss matters that haven't 't even entered my head! So I've been enlightened as to some other aspects re: T2. So thank you too peeps.


Thanks for your kind words @wirralass, it is very much appreciated. I have to say though, I'm here mainly to answer any questions people have about Diabetes UK, the work we do or any suggestions of events, research or anything like that - I'm all ears!   But it is the incredible dedication of the moderators and members on here, who really make this forum what it is. Their continuous support and the welcoming & inclusive atmosphere they have created is all thanks to them! (You know who you are!) Delighted to hear that you have already got so much from reading the posts on here, I hope many others feel the same. 
And- fantastic HbA1c and BG levels, welcome to the forum!


----------



## Wirrallass

suzanne53 said:


> Hi im new to the forum so hi, just a silly question, this evening I cant remember if I have taken y metformin or not any advice please.


Hi Kateita. I echo trophywench's suggestion re a pill organiser. (I have three) Without mine I would forget what I have or haven't taken. Handy useful things, one of which I keep in sight on the kitchen worktop. I also have a smaller circular tab organiser which I keep in my handbag for when I travel some distance, to visit my younger daughter....and a rather sweet little tablet organiser which holds one days supply of tabs which I carry with me when I go out locally. Take care.


----------



## Wirrallass

Hannah DUK said:


> Thanks for your kind words @wirralass, it is very much appreciated. I have to say though, I'm here mainly to answer any questions people have about Diabetes UK, the work we do or any suggestions of events, research or anything like that - I'm all ears!   But it is the incredible dedication of the moderators and members on here, who really make this forum what it is. Their continuous support and the welcoming & inclusive atmosphere they have created is all thanks to them! (You know who you are!) Delighted to hear that you have already got so much from reading the posts on here, I hope many others feel the same.
> And- fantastic HbA1c and BG levels, welcome to the forum!



Thank you Hannah, I apprec, take care


----------



## Wirrallass

robert@fm said:


> Enter "chocolate" in the search box at the top right of any forum page, or into the Advanced Search (or Search Tags — yes, the tag "chocolate" has been used a few times) page, and behold what comes up in the search.


Robert@fm. Sorry late responding but thanks for that little bit of info. re search Chocolate. I apprec. Take care. Wirralass


----------



## Smiric

Hey, thanks for answering questions! My question is - when can we expect CGMs to be funded/partially funded by the NHS? And who/where do we get in contact to speed this process along? Cause systems take far too long to change, are nearly always out of date, and I'd like to stop paying through the nose for my CGM as soon as humanly possible. On the subject of which, I've just bought myself a Libre and my control is already significantly better, as well as the fact that I've now noticed that I've been having consistent lows during the night but waking up with OK blood sugars (wondered why I always felt shit when I woke up)... something I never would have picked up on by doing conventional tests. Not only that, but (in my case at least) using a combination of a CGM & a few testing strips for certain situations will actually cost the NHS (and me) a lot less money considering the amount of testing strips I was using to try and maintain reasonable blood sugars beforehand (unsuccessfully, I might add). I can do the calculations if need be. I look forward to your reply - thanks!


----------



## mikeyB

Simple answer, Smiric. Never, not in England anyway.


----------



## Smiric

mikeyB said:


> Simple answer, Smiric. Never, not in England anyway.


Why?


----------



## Diabetes UK

Smiric said:


> Hey, thanks for answering questions! My question is - when can we expect CGMs to be funded/partially funded by the NHS? And who/where do we get in contact to speed this process along? Cause systems take far too long to change, are nearly always out of date, and I'd like to stop paying through the nose for my CGM as soon as humanly possible. On the subject of which, I've just bought myself a Libre and my control is already significantly better, as well as the fact that I've now noticed that I've been having consistent lows during the night but waking up with OK blood sugars (wondered why I always felt shit when I woke up)... something I never would have picked up on by doing conventional tests. Not only that, but (in my case at least) using a combination of a CGM & a few testing strips for certain situations will actually cost the NHS (and me) a lot less money considering the amount of testing strips I was using to try and maintain reasonable blood sugars beforehand (unsuccessfully, I might add). I can do the calculations if need be. I look forward to your reply - thanks!




Hi @Smiric - apologies in advance for my lengthy reply! 
Unfortunately getting a new technology onto the NHS is a slow process, but not an impossibility and there has already been some progress with the Freestyle at least!
Up until recently, the Freestyle could only be purchased privately, but it can now be _purchased_ by the NHS, however its not yet avaiable on prescription. This means that the NHS could purchase the libre for extreme cases, eg. patients who are unable to finger prick, but it isn't widely available for _all _on prescription. This is because, the decision for medication to be available on prescription comes from the BSA (NHS Business Service Authority). Manufacturers have to apply for reimbursement and the BSA will need evidence of effectiveness. Diabetes UK have invested in and completed two large clinical trials to demonstrate the same value to payers that patients and physicians are experiencing now with FreeStyle Libre. We are actively pursuing reimbursement and Abbott Diabetes Care has submitted to the BSA to have FreeStyle Libre Flash Glucose Monitoring System Sensor assessed for listing in the NHS England and Wales Drug Tariff - which would mean that it could be made available on prescription.

Progress is much slower for CGM's. Currently funding is available for CGMs to accessed by children through the NHS, although eligibility is strict and families may only recieve partial funding.

We have worked alongside JDRF and Input Diabetes to provide support for those trying to access the technology. Input Diabetes is an organisation who specialise in helping people access diabetes technology, including accessing funding for CGMs and they have outlined the progress and the barriers around CGM's becoming available throught the NHS on their website:
http://www.inputdiabetes.org.uk/cgm/cgm-nhs-funding/
http://www.inputdiabetes.org.uk/cgm/cgm-funding-bigpic/

Ultimately, all new technology has had to go through similar processes to become more widely available. It can be frustrating when we know that the technology is there, and certainly some technology, such as insulin pumps for example, have been processed faster. But there's hope for the future - over the years they have been many advances - things like blood glucose monitors or insulin pens were not so widely available. I am positive that it will eventually be more accessible, it will just (frustratingly) require a bit of time.


----------



## wiseowl

Good morning I am in my 4th month since diagnoses  can anyone tell me just how important the FBG is on waking I have tried to get my head round it,this morning I tried an experiment I took my reading at 5am =6.0mmol at 5.05am=5.4 at 5.10am=56 is their a point to doing this and which is the true reading,or shall I just test before meals and after meals which I can understand


----------



## SadhbhFiadh

I do waking, pre-meal, and 2 hours post meal. That's six times a day, usually. 
I have only tested a second time if I don't like the first result.  Not very often. I'm not sure if that answers your question. 

PS I love the pictures on your blog spot from yesterday.


----------



## wiseowl

Good morning @SadhbhFiadh and thank you my friend ,much appreciated,I'm not sure it can be answered ,and thank you for looking at my blog and for your kind and friendly comments


----------



## Wirrallass

wiseowl said:


> Good morning I am in my 4th month since diagnoses  can anyone tell me just how important the FBG is on waking I have tried to get my head round it,this morning I tried an experiment I took my reading at 5am =6.0mmol at 5.05am=5.4 at 5.10am=56 is their a point to doing this and which is the true reading,or shall I just test before meals and after meals which I can understand


Hi@wiseowl. In answer to your Q, what is the importance of taking a waking bgl:

A. To monitor how well the body regulates blood glucose in the absence of of food.

Blood glucose tests give an indication of the amount of glucose in the blood but only at the time when the the blood sample is taken. A blood glucose reading can be taken when:- a) fasting b) before a meal c) two hours after a meal

Diagnosed T2 April 2016
Sukkarto SR metformin withdrawn
Atm diet & exercise only


----------



## Wirrallass

wiseowl said:


> Good morning @SadhbhFiadh and thank you my friend ,much appreciated,I'm not sure it can be answered ,and thank you for looking at my blog and for your kind and friendly comments


@wiseowl. Please see my response following your query. Hope it is helpful, take care

Diagnosed Type2 April 2016
Sukkarto SR withdrawn
Diet & exercise only


----------



## SadhbhFiadh

Dawn Phenomenon. I found a great metaphor to explain this, I think, on an American (I think) website. I'll put that below.
I am looking for a graph about this, about normal vs type 2 and the liver dumping, but this is my main question: I've always been an early riser, 5-6am. But someone who is never an early riser (late morning, 10-11am) would the liver still be on or close to the same sore of body clock/schedule? 

That word picture: 
"In the Dawn Phenomenon, the body is under orders to release some of the stored sugar into the bloodstream. Like the over-inflated balloon, the liver puts forth prodigious amounts of sugar in order to relieve itself of this toxic sugar burden. It’s like trying to hold a fart inside. As soon as we get to the bathroom, it’s ‘Fire in the Hole!’. When our liver gets the ‘go’ signal to release sugar, it does so in huge amounts, overwhelming the pitiful attempts of the insulin to keep it bottled up inside. That’s the Dawn Phenomenon."  (ref click this)


----------



## trophywench

Well - hang on - there's no-one in the human race who doesn't have their liver release some glucose into their blood stream first thing of a morning!  It's a bit like blinking - it's autonomic.

Man's normal lowest BG is in the early hours of the morning - around 2 - 3 am (the 'suicide hour' as it's known in A&E/ambulance service circles for absolutely obvious and true reasons)  sooo - in order to have the energy to rise, and sally forth to hunt the woolly mammoth - or even to hunt and gather - we need a boost.  And that's what Mr Liver still does.  Insulin users see more of this at other times of day so it becomes more obvious - if we go low enough - hypo enough - the liver should and will, help out.  Trouble is - we never know when or how much so we can't just rely on it to help us out every time.  If we've had alcohol beforehand anyway - it simply won't, because it is incapable of doing two jobs at once and it always prioritises processing the alcohol before it even considers doing anything about our BG.  We could actually be at least in a coma if not dead, by that time.

For some reason, T2 people much more than any other Ts, sometimes have livers that are particularly over-active in a morning and help out too much.  How on earth do we stop the liver in its tracks? - by eating!!!  It knows - again primevally - that as soon as its body eats, it isn't  needed any more - cos the food will do the trick.  So - it stops!

You don't have to feed it carbs.  Your body can make glucose (which is what your cells are craving) out of carbs, protein and fat.  When you feed it enough carbs to do enough, it doesn't bother too much converting the other two - it's much harder work for it!  So - for quick and easy increases in BG - choose carbs.  Hence why we insulin users - use something super quick and the quickest is glucose itself - when we're hypo.

And of course - diabetics are the only humans in the world - who even know their bodies DO it !


----------



## SadhbhFiadh

Thanks, Jenny. So I guess that explains why I wake up with 8s or sometimes 9s and the rest of the day, including after breakfast, I've got 5s & 6s. But is it a reasonable goal to bring that waking finger prick down into the 6s too? I don't really have to worry about hypos, even the phantom ones, but I worry quite a lot about the long term effects of high sugars. I asked the pharmacist yesterday if it would be ok to move my sitiglipton to bedtime and she said as long as I kept it about the same time each day, that would be fine. 
I love the last line: it rather gives it a bit of perspective.   Maybe I should just relax and give the whole thing more time. 
Thanks again.


----------



## trophywench

Some people apparently, find a snack before bed reduces it a bit Sadhbh.  One T2 we knew used to say when they went to bed, his wife went on up and his routine was to check all the doors and windows were secure, so whilst checking the back door he'd grab ONE Nairns mini Oatcake (think that's 5g carb), butter it and stick a bit of cheddar on top, and literally eat it on his way up the stairs.  It was said, that you needed the mixture of slower carb. fat to slow that down even more, and protein do do enough of a job - theory being if your BG doesn't plummet so far during that hour - it won't shoot up so high in the morning.

You won't have lost anything if you wanted to try it - and you never know - it might work for you!


----------



## SadhbhFiadh

I will try that. I used to have a bit of egg on an oatcake with mayo while my husband had his supper. 
I just looked at my food diary and there was a week in January that I was struggling to keep 80g carbs, landing every day around 100g carb a day that my waking bloods were high 6s- low 7s that was always that late supper, around 9pm. I'll give that a try for 2-3 weeks before I move my meds around. Thanks again.


----------



## Fayazur Rahman Sufi

Hi I am new here. Don't understand measuring units really. I used to know diabetes measurement are like on the scale 1 to 6 the normal range should be. But my doctor measured mine one which comes up 68 !!!!. She said normal range is below 42. my question is how come it be 42 or 68 whatever ? what kind of scale/units are those. how do I know how much is my glucose level in in scale of 1 to 6. Does anyone have any Idea about the testing methods or units.. thanks


----------



## Ralph-YK

Hi. There's several scales.  Sounds like a HbA1c test. 48 and above and you're diagnosed diabetic. Some on here have been around 100.
42 - 48 is pre diabetic.
The HbA1c is an average over 2/3 months.  It's done with blood taken from the arm
There's a convention table on the diabetes UK website. I don't have the link at the moment.


----------



## Wirrallass

Welcome to the forum Fayazur, I am Type2 also. Ask away, there's a always someone here who will be able to answer your questions. I use a Contour TS meter to test my blood glucose levels (Bgl) but there are a few here who recommend the Code free meter & testing strips, mainly because should your doctor not supply you with a meter, then you'd need to purchase one for yourself if you want to check your bgls regularly. @Northerner. I believe the test strips for that meter are fairly £  reasonable.

We here test our bgls:-
a) Upon waking
b) Before each meal
c) 2 hours after each meal
I usually test last thing at night too.
Good luck & take care


----------



## Fayazur Rahman Sufi

wirralass said:


> Welcome to the forum Fayazur, I am Type2 also. Ask away, there's a always someone here who will be able to answer your questions. I use a Contour TS meter to test my blood glucose levels (Bgl) but there are a few here who recommend the Code free meter & testing strips, mainly because should your doctor not supply you with a meter, then you'd need to purchase one for yourself if you want to check your bgls regularly. @Northerner. I believe the test strips for that meter are fairly £  reasonable.
> 
> We here test our bgls:-
> a) Upon waking
> b) Before each meal
> c) 2 hours after each meal
> I usually test last thing at night too.
> Good luck & take care


thanks


----------



## Ronald Robertson

Hannah DUK said:


> 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.





Hannah DUK said:


> 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.


Hi. Glad this website is here. Looks very good for relevant support.Just started metformin. Is there a best way to take it to reduce diarrhoea. Eg during or after a meal. Also, how long to try the one tablet before goes away. Many thanks. Ron.


----------



## Copepod

Welcome to the forum, Ronald Robertson. If you introduce yourself in Newbies thread, you will get more replies. It's definitely best to take metformin with food in your stomach to lessen diarrhoea and farting. Also, reducing carbohydrate helps.


----------



## Ronald Robertson

Copepod said:


> Welcome to the forum, Ronald Robertson. If you introduce yourself in Newbies thread, you will get more replies. It's definitely best to take metformin with food in your stomach to lessen diarrhoea and farting. Also, reducing carbohydrate helps.


----------



## Ronald Robertson

Thanks for reply. Appreciate it. I'll post in newbies thread too. Cheers


----------



## xoxDawniexox

I have a question. Im new, so I hope its ok. Ive brought one of these new foot peels. Its milk and bamboo vinegar, you put in on then in a week your foot peels. Leaving you with lovely baby soft feet. Is this dangerous in diabetes? Any advice apreciated!


----------



## robert@fm

xoxDawniexox said:


> I have a question. Im new, so I hope its ok. Ive brought one of these new foot peels. Its milk and bamboo vinegar, you put in on then in a week your foot peels. Leaving you with lovely baby soft feet. Is this dangerous in diabetes? Any advice apreciated!


As said, best to ask a podiatrist first. I know the hard way how important diabetic foot care is; in February I suddenly (for what reason I have never found out) got blisters on my left foot, which rapidly became infected (probably because I attend hospital 3 days a week), and since then that foot.leg has been bandaged (in fact, _both_ legs are currently bandaged). Fortunately, it seems to be healing at last...


----------



## Bill Stewart

@DeusXM - another problem could be the idea of supporting a prescription for both libre and a blood-glucose monitor for drivers as the libre is not acceptable for driving purposes. so why fund both?


----------



## trophywench

Had a DUK mailshot (email) to Diabetes Voices, to ask prospective MPs to 'sign up' to DUK's Manifesto.

I was not that surprised to read that less then 50% of T2s reach targets.  However I was absolutely stunned to learn that less than 18% of T1s do.  Whaaat?

Then I started to realise that I'm one of the 82+% - because all sorts of things that aren't 'diabetes' are part of 'my' targets.  Smoking is the first of these of course so mea culpa.  However - my Cholesterol level is the next one.  My diabetes consultant says that everybody - diabetic or not, regardless of what their Chol level is - needs to reduce it by 20 - 30%.  He's blooming well adamant.  I said - so if I was 30, and my total chol was 3.0 - you'd STILL want me to reduce it?  Yes, he would.

Anyway I'm 67 and it's 5.5 - so I said find me a drug or method that doesn't have the mental health side effects I had on statins and I'll happily give them a go.  He said I knew there weren't any.  And I said Well - and you know I'll never willingly ever take another statin again - so why do you insist on having a go at me about it, every time I walk through that flippin door? which he declined to answer and moved on.  See - if I lose my memory and can't function - like before when I was on the benited things - it won't be HIS problem, will it?

I've tried mentioning research and stuff, he just gets annoyed and says he isn't a cardiologist so absolutely refuses to engage in such debates.

I thought stuff like targets had to be discussed with patients and agreed?  Never been asked if I even want a chol target - it's just been imposed upon me, same as the BG one - but of course I don't object to that.

What the hell else have I got a target for that nobody's bothered to tell me?


----------



## Robin

trophywench said:


> Had a DUK mailshot (email) to Diabetes Voices, to ask prospective MPs to 'sign up' to DUK's Manifesto.
> 
> I was not that surprised to read that less then 50% of T2s reach targets.  However I was absolutely stunned to learn that less than 18% of T1s do.  Whaaat?
> 
> Then I started to realise that I'm one of the 82+% - because all sorts of things that aren't 'diabetes' are part of 'my' targets.  Smoking is the first of these of course so mea culpa.  However - my Cholesterol level is the next one.  My diabetes consultant says that everybody - diabetic or not, regardless of what their Chol level is - needs to reduce it by 20 - 30%.  He's blooming well adamant.  I said - so if I was 30, and my total chol was 3.0 - you'd STILL want me to reduce it?  Yes, he would.
> 
> Anyway I'm 67 and it's 5.5 - so I said find me a drug or method that doesn't have the mental health side effects I had on statins and I'll happily give them a go.  He said I knew there weren't any.  And I said Well - and you know I'll never willingly ever take another statin again - so why do you insist on having a go at me about it, every time I walk through that flippin door? which he declined to answer and moved on.  See - if I lose my memory and can't function - like before when I was on the benited things - it won't be HIS problem, will it?
> 
> I've tried mentioning research and stuff, he just gets annoyed and says he isn't a cardiologist so absolutely refuses to engage in such debates.
> 
> I thought stuff like targets had to be discussed with patients and agreed?  Never been asked if I even want a chol target - it's just been imposed upon me, same as the BG one - but of course I don't object to that.
> 
> What the hell else have I got a target for that nobody's bothered to tell me?


Yes, I don't meet the target for Type 1 ether - on the cholesterol front. My GP is relaxed about mine, which is usually around 5.5, because my ratio is very good, but the message I originally got from the hospital was that, 'whatever it was, it could always be lower' - even though this would only be achieved by lowering my 'good' cholesterol!


----------



## Copepod

My cholesterol levels are acceptable for someone without diabetes, so I choose not to take statins. GP is happy for them to remain unclaimed on repeat prescription list, because mg blood pressure is good and I'm pretty active. Still haven't succeeds in getting pot bellied GP to join a parkrun though
..


----------



## Northerner

trophywench said:


> Then I started to realise that I'm one of the 82+% - because all sorts of things that aren't 'diabetes' are part of 'my' targets. Smoking is the first of these of course so mea culpa. However - my Cholesterol level is the next one. My diabetes consultant says that everybody - diabetic or not, regardless of what their Chol level is - needs to reduce it by 20 - 30%. He's blooming well adamant. I said - so if I was 30, and my total chol was 3.0 - you'd STILL want me to reduce it? Yes, he would.


My cholesterol went down to 2.4 when I was on statins - the nurse said she'd never seen it that low  Since I am aware that cholesterol is essential to the life and integrity of every cell I decided it was far too low for me and stopped taking them. My last measure was about 4.6, which doesn't meet the target, but the target is crude anyway, as we all know, since it is the HDL/LDL ratio that is most important. Personally, I think it would be pushing the qualifying 'meeting criteria' to say that it shouldn't include me!


----------



## Ralph-YK

trophywench said:


> I thought stuff like targets had to be discussed with patients and agreed?


That would be too much patient involvement.  I've never had any targets at all. Nor care plan or action plan.  When I tried to have an action plan from nurse at my old GP practice she got p*** at me.  Last few months is the first time I've had any.  And that's only after I've made a fuss and been getting on at people.  Last October I practically threatened to stop taking my medication, and mentioned just sitting at home all day eating cake.
Last time I saw nurse my HbA1c was 47 (?).  She gave me a target of 55 and less.


----------



## trophywench

He also did a diatribe about QRisk scores and how important they are.  Well - they may be - to him LOL  Told him if he added up my QRisk scores and really believed em - then he'd know very well I ought to have been pushing up daisies for a good while !

They give people like him some of the info, as absolute Gospel truth on which to base their treatment of their patients, but not the knowledge - or skill - to answer the questions or challenges.


----------



## TheClockworkDodo

trophywench said:


> I was not that surprised to read that less then 50% of T2s reach targets.  However I was absolutely stunned to learn that less than 18% of T1s do.  Whaaat?
> 
> ...
> 
> What the hell else have I got a target for that nobody's bothered to tell me?



Where are these targets, please?!  There are several replies from people who seem to know what they are, and nobody's bothered to tell me either!  All they ever say to me is "your kidneys are fantastic" (said with a look of great surprise) and "have fewer hypos" (I would if I could)


----------



## Robin

TheClockworkDodo said:


> Where are these targets, please?!  There are several replies from people who seem to know what they are, and nobody's bothered to tell me either!  All they ever say to me is "your kidneys are fantastic" (said with a look of great surprise) and "have fewer hypos" (I would if I could)


They are all contained in the NICE guidelines, but they are dotted around. Basically, it's HbA1c of 6.5 or under, BP of 135/85 or 130/80 if you have kidney problems, and Cholsterol under 4, (I think, that's the one I didn't recheck, because it's in a different section)
https://www.nice.org.uk/guidance/ng17/chapter/Key-priorities-for-implementation
https://www.nice.org.uk/guidance/ng17/chapter/1-Recommendations#control-of-cardiovascular-risk
Basically, the consultant listed them to me when I was first diagnosed, which is why I knew about them, but since I've been transferred back to my GP, neither she nor the nurse has ever mentioned them.


----------



## trophywench

Funny how they only use the guidance when it suits em to, ain't it?  Pooh pooh it and stress it's ONLY guidance when  they don't want to give someone test strips - and obeying them like as I said Gospel - when it means THEM getting another tick in a box.


----------



## Bill Stewart

here is a target chart available to users of the scottish health service (diabetes)


----------



## trophywench

Not a clickable link for me.


----------



## TheClockworkDodo

Thanks, Robin.
My average BP last time I checked was about 105/63 so I am well within their limits there!  My main risk is not being able to sit up in the morning because I don't have enough BP ...


----------



## TheClockworkDodo

I can't see the chart either, Bill - do you have a link to it?


----------



## Ralph-YK

Image: it's not a hyper link, and appears the image isn't available to display.


----------



## TheClockworkDodo

Yes, that's why I asked if Bill has a link to it.


----------



## MikeTurin

https://www.diabetes.org.uk/The-food-you-love-but-healthier/
I've found thin interesting initiative on the website, but I dare to ask, where is the RSS link or the link to subscribe to the mailing list?
I think that is an interesting thing to follow, but I can't find where I could subrscribe
I've also disabled Privacy Badger and uBlock Origin but no luck).


----------



## 2Bornot2B

I'm diabetic Type II my readings are erratic 6.5, 7.0, 9.2 , 5.5 with an average of 7.0. My new GP has put me on statins. Over the last 2 months I have felt tied, I haven't any energy my eyes feel heavy and sore, I'm now wondering if this is the side effects of the medication. I also take thyroxin, Tregenta and sertraline. When I look in the mirror  I'm expecting to the grim reaper standing behind me. Can anyone help please.


----------



## Copepod

@2Bornot2B You're right that 2 months of side effects corresponding to a new medication suggests a connection. Plus, medications can interact with each other, so the more tablets you are taking, the more likely are interactions.
I suggest asking your pharmacist for a medication review, to see if any changes to your types and doses of tablets could be tweaked to make your life more comfortable. Pharmacists are the experts in medications, and their advice is usually well taken by wise GPs.


----------



## 2Bornot2B

Thanks common sense told me that my suspicions right. So I'm not taking statins again I'll just cut out fats


----------



## Copepod

I still think that a medication review with a pharmacist, covering all meds, not just statins, would be beneficial, @2Bornot2B.


----------



## Diabetes UK

MikeTurin said:


> https://www.diabetes.org.uk/The-food-you-love-but-healthier/
> I've found thin interesting initiative on the website, but I dare to ask, where is the RSS link or the link to subscribe to the mailing list?
> I think that is an interesting thing to follow, but I can't find where I could subrscribe
> I've also disabled Privacy Badger and uBlock Origin but no luck).



Hi Mike - you can click the 'Get Your Free Recipe Videos' link in that page -  it will take you through to a contact form and you'll recieve the videos via email. Here's the contact form if you'd like to sign up: https://forms.diabetes.org.uk/feelg...95.863614098.1496318082-2137794206.1496307144


----------



## smudge

I need some advice and my Diabetic Nurse is on leave, so I'm hoping somebody here can help.  I was diagnosed T2 six months ago, and was prescribed Metformin. I suffered very badly from gastric problems and was changed to Sukkarto Slow Release. The problems are less frequent, but still there every few days, and I have only a few minutes warning to get to a WC. I am going to be travelling in a week, and that may not always be possible. Is there any harm in leaving off the Sukkarto for a day or two before travelling, or can I use a proprietary medicine such as Diocalm?


----------



## Copepod

@smudge As your DSN isn't available, you could consult a pharmacist, ideally one who dispenses your medication to ask their advice. They're the profession which specialises in medication and can sell a wider range of over the counter medication than eg supermarkets. 
Plus, if you're travelling anywhere exotic, some have travel clinics, can prescribe anti-malarials etc, although for those, you should consult at least  2 or 3 weeks before departure.


----------



## smudge

Copepod said:


> @smudge As your DSN isn't available, you could consult a pharmacist, ideally one who dispenses your medication to ask their advice. They're the profession which specialises in medication and can sell a wider range of over the counter medication than eg supermarkets.
> Plus, if you're travelling anywhere exotic, some have travel clinics, can prescribe anti-malarials etc, although for those, you should consult at least  2 or 3 weeks before departure.



Thank you, I will. Nothing exotic, but on the RER halfway from Gare du Nord to Bercy would be an anxious moment. I usually check out the nearest WC and Fire Exit wherever I am.


----------



## Copepod

Me too, @smudge, plus life jackets and rafts on ferries  Bon voyage!


----------



## Ljc

Is their a way I can sign up to the Enewsletter. I've had a look but the form seems to be for when you first join.


----------



## Deleted member 18634

Ljc said:


> Is their a way I can sign up to the Enewsletter. I've had a look but the form seems to be for when you first join.




Hi Lin, you can sign up for our e-newsletter here:

https://www.diabetes.org.uk/MyProfile/Registration/


----------



## HelenA21

Hi,

Excuse my ignorance, but are Diabetes.org.uk and Diabetes.co.uk connected, or are they completely different organisations?

What are the main differences between them?

Best Wishes
Helen


----------



## grovesy

Diabetes.org is the Diabetes Chartity. The Diabetes.co.uk is an independent website.


----------



## HelenA21

grovesy said:


> Diabetes.org is the Diabetes Chartity. The Diabetes.co.uk is an independent website.



Thanks!


----------



## Robin

HelenA21 said:


> Hi,
> 
> Excuse my ignorance, but are Diabetes.org.uk and Diabetes.co.uk connected, or are they completely different organisations?
> 
> What are the main differences between them?
> 
> Best Wishes
> Helen


They are completely separate. ( though often confused for one another by unsuspecting Newbies) 
diabetes.org.uk is the charity, Diabetes UK, and this forum comes under their umbrella. 
diabetes.co.uk is a commercial organisation, (paid for mainly by advertising, I think.)


----------



## patchworks101

Hi Hanna.
It's been interesting reading some of the posts on the forum regarding problems with getting devices, needles and testing strips prescribed by some GPs.
I live in SW France and have had no problem whatsoever. Recently my testing device started playing up and, as there was no response from the manufacturer, my GP gave me a prescription for a new machine (different make), lancets and testing strips - no argument.
Perhaps DUK could carry out some research into the differences between the UK and their European neighbours in their approach to prescriptions for diabetes related equipment.


----------



## trophywench

@patchworks101 - firstly welcome to the forum.

You wouldn't have had any trouble here either - because you are a Type 1. (well occasional cock-ups even with T1s still occur, admittedly, but they soon get sorted out)

If we could persuade our Government at any time to do anything they weren't hell bent on doing anyway - we'd all need hospitalising for severe shock.  The mere thought anyway that a government would ask or take advice from another country seems a bit far-fetched too LOL  Apart from the fact of course they have suddenly become Europhobic as a body so the mere thought of asking a European body for anything not directly in our favour and connected with Brexit, also seems unlikely!

The main single reason T2s have such difficulty obtaining test strips - is lack of funding for the NHS from the UK Government.

If everyone in the UK had a co-pay on drugs same as the population of France does - and total lack of availability of certain drugs in some Departements (I can give you an example of this happening if you don't believe me) cos each one can and does have different rules, perhaps glucometers - or rather the test strips since the companies give the meters away free anyway - wouldn't be such a problem here?

(And in case you were wondering, my husband and I are Francophiles and spend at least a few months of each year touring France in our motorhome and have both French native and English ex-pat residents as friends living in various places there.  Personally we only wanted the EU to change in some ways - not divorce ourselves from it again - but we can't always get what we want - as was proved yet again last Thursday!  LOL  You can only please some of the people, some of the time!)


----------



## Copepod

HelenA21 said:


> Hi,
> 
> Excuse my ignorance, but are Diabetes.org.uk and Diabetes.co.uk connected, or are they completely different organisations?
> 
> What are the main differences between them?
> 
> Best Wishes
> Helen


Completely different. Www.diabetes.org.uk is Diabetes UK charity. Www.diabetes.co.uk is a commercial organisation.


----------



## Bill Stewardson

HelenA21 said:


> Hi,
> 
> Excuse my ignorance, but are Diabetes.org.uk and Diabetes.co.uk connected, or are they completely different organisations?
> 
> What are the main differences between them?
> 
> Best Wishes
> Helen



I was wondering the same thing Helen.


----------



## mikeyB

And this forum doesn't seperate T1s and T2s, which is a bonus - many of their concerns are much the same.


----------



## MikeTurin

mikeyB said:


> And this forum doesn't seperate T1s and T2s, which is a bonus - many of their concerns are much the same.



The number of messages here is inferior, so a forum subdivision isn't a big priority.
But even if some research is indicating that T1 and T2 are more correlated that the medical sience is stating nowadays there are some big differences on the day do day routine. T2 normally have to buy meter and test strips because don't normally risk hypos and are told that they shouldn't measure the BG.
There's also a bad omen on T2 that are considered by general public fat gluttons that deserve the condition for their sins - alas also from some T1 - luckily the T1 I know in real life are all smart people. 

But I have to agree that for adults the challenges diabetes poses are very similar.


----------



## Ralph-YK

Seems active enough to me, while quiet enough for threads, and post, not to get lost too easily. Allowing people to follow a discussion.


----------



## The Gov

Hello Diabetes UK,  just wondered if this forum is available as a mobile app too ?


----------



## trophywench

Here's a question for Diabetes UK to answer please!!  - https://forum.diabetes.org.uk/board...sed-mar-17-thoughts-please.67812/#post-733117

What's the answer?


----------



## Diabetes UK

patchworks101 said:


> Hi Hanna.
> It's been interesting reading some of the posts on the forum regarding problems with getting devices, needles and testing strips prescribed by some GPs.
> I live in SW France and have had no problem whatsoever. Recently my testing device started playing up and, as there was no response from the manufacturer, my GP gave me a prescription for a new machine (different make), lancets and testing strips - no argument.
> Perhaps DUK could carry out some research into the differences between the UK and their European neighbours in their approach to prescriptions for diabetes related equipment.



Thank you for your comments. Its good to hear that you had such ease of access with your GP regarding new equipment. Generally, if a device is faulty and an item is available on prescription, then GPs in the UK will replace them (it is essential equipment for those managing diabetes with insulin), however the issues currently in the UK for anyone T1 or on insulin (there are similar issues for those managing diabetes with diet/medication), is either a restriction of the number of strips they can have or the choice of meter they use, with some individuals finding that they are being requested to use cheaper, less effective pieces of equipment.

I have passed your comments over to our Policy Team to see if we are making any considerations around how other countries approach issues of prescribing equipment. Perhaps @Stefan Diabetes UK may be interested in your post too. As part of our Diabetes Voices Team, he has looked a lot at the difficulties people have been facing around accessing test strips and campaigning to drive improvements. Thanks again


----------



## Diabetes UK

The Gov said:


> Hello Diabetes UK,  just wondered if this forum is available as a mobile app too ?



Hello - the forum site is 'mobile friendly' so should work well on any smart phone. There is not yet a Diabetes UK Forum App, but we're always open to feedback and suggestions


----------



## Diabetes UK

trophywench said:


> Here's a question for Diabetes UK to answer please!!  - https://forum.diabetes.org.uk/board...sed-mar-17-thoughts-please.67812/#post-733117
> 
> What's the answer?



Thanks! I will post a response in the thread....I do believe I know the answer


----------



## Diabetes UK

patchworks101 said:


> Perhaps DUK could carry out some research into the differences between the UK and their European neighbours in their approach to prescriptions for diabetes related equipment.



Further to my last comment, here is a reply from our Policy Team 

"Hi @patchworks101, thank you for sharing your experience. This is an interesting idea that could show up some of the issues that we have in this country. The French health system is more generously funded than in the UK – they spend 11 per cent of their national income on healthcare in contrast to 8.5% in the UK so they will have more ability to fund medical technology. It would not be straightforward to collect the data in a comparable way across Europe. However, we are in touch with our French counterparts about the Freestyle Libre. The manufacturer Abbott have made swifter progress getting the device funded in the French health system than in the UK."


----------



## LorraineP

I am constantly fire fighting widely fluctuating blood sugar levels and I worry for my long term health. However my Hb1ac is very good. The last three were 6.4, 6.7 and 7.1. However I only achieve this by keeping a constant watch including at 2 hourly intervals throughout the night. I don't have the same pattern from one day to the next.

HOWEVER, my diabetic consultant tells me that it's the HB1ac result that matters for good health and the fluctuating blood sugars don't matter. This flies in the face of everything I've been told for years. What is the perceived wisdom please on the long term effects of variable blood sugars?


----------



## TheClockworkDodo

That's a really good question, @LorraineP - I will be interested to see any replies.  I'm curious to know which insulins you're on?  I had random pattern-less and increasingly fluctuating bgls when I was on Lantus - but my HbA1cs were all between 6 - 7.  I wouldn't say my bgls are great now (I've changed to Tresiba) but they're better, and there is much more of a pattern to them which makes it easier to adjust insulin doses sensibly.


----------



## LorraineP

Hi Juliet, I got my first pump a year ago and I'm on Novorapid. I bought a Freestyle Libre at the same time so both pieces of kit help me to fire fight better hence the better average BG but the fluctuations are still there. I've been told for years that it's not good to have variable results even if the Hb1ac is good but now suddenly I'm being told the opposite. It doesn't make sense to me so I'm wondering what other people have been told.


----------



## TheClockworkDodo

No-one's mentioned fluctuating results to me, except to tell me not to have so many hypos - easy to say, less easy to do!  I've been told my HbA1c was too low (it was 42 at the time, which is around 6, I think, so not really low, in fact just barely down into the range for non-diabetics!), but no-one seems to worry either about highs or about spikes and plummets.
I have a Libre and a pump on my to-do list, but I have really bad cognitive dysfunction so sorting anything new takes a huge amount of time and effort for me.

@Hannah DUK - does DUK have any thoughts about wildly fluctuating sugars, especially when combined with good HbA1cs, giving the impression of good control?


----------



## Bill Stewardson

Bill Stewardson said:


> I was wondering the same thing Helen.



I see this question awaits an answer ??

I ask because I am hoping to take some concerns to well placed people within the NHS/D community, using the existing site(s) May have been helpful.


----------



## Ljc

Hi @Bill Stewardson
You must have missed it as Copepod answered this in post 266


Copepod said:


> Completely different. Www.diabetes.org.uk is Diabetes UK charity. Www.diabetes.co.uk is a commercial organisation.


----------



## Ljc

Bill. I meant to say good luck.


----------



## Ljc

Oops I missed Robins reply , post 263 v


Robin said:


> They are completely separate. ( though often confused for one another by unsuspecting Newbies)
> diabetes.org.uk is the charity, Diabetes UK, and this forum comes under their umbrella.
> diabetes.co.uk is a commercial organisation, (paid for mainly by advertising, I think.)


----------



## Andrew477

Hello i got into a really weird situation yesterday. I finally decided to go out with my friends for a few drinks, during the night i had 2 and a half drinks. In one of the busier bars my sugar went down to 2.1 and i went to the bar. I asked one of the security guards who was blocking the way to help me, i informed him that im diabetic type 1 with a hypo he told me to drink the cider i had in my hands and wait. I told him its not possible to know how much sugar it has as it does not have a label. He grabbed me by the neck and kicked me outside.

Leaving me outside for the worst hour of my life. My sugar was 2.1 before it happened, all my bellonging were inside (sugar meter, money, phone).

The security guard that assaulted me went back in. And his ''medically trained'' colleague explained me why i do not have a diabetis... and why the device connect to me is not a pump. Well dont get too excited it's not some sort of miracle. I do have diabetes type 1 and had it for over 10 years.

The guards were aware that im diabetic with a hypo.. and that i might get into coma. They refused to call a manager multiple times. Some staff members pretended to be managers. When the real manager came out he gived me a fake email for complains.
I managed to get my stuff back after running up to police car and begging them to help me. THANKS GOD THEY HAD SWEETS! All together i spend around 2-3 hours with low sugar till i managed to get to a takeaway that was open.

My sugar kept jumping all night and this was the craziest thing that ever happened to me. I never though that asking for help could put me in a coma.
What should i do in this situation?
When they hold your money and sugar meter and you having a hypo outside because you get kicked out after asking for help?
I feal that as diabetic i can't go out confortably anywhere.

Please let me know what would you do in this situation! And if that ever happened to you


----------



## Bill Stewardson

Andrew477 said:


> Hello i got into a really weird situation yesterday. I finally decided to go out with my friends for a few drinks, during the night i had 2 and a half drinks. In one of the busier bars my sugar went down to 2.1 and i went to the bar. I asked one of the security guards who was blocking the way to help me, i informed him that im diabetic type 1 with a hypo he told me to drink the cider i had in my hands and wait. I told him its not possible to know how much sugar it has as it does not have a label. He grabbed me by the neck and kicked me outside.
> 
> Leaving me outside for the worst hour of my life. My sugar was 2.1 before it happened, all my bellonging were inside (sugar meter, money, phone).
> 
> The security guard that assaulted me went back in. And his ''medically trained'' colleague explained me why i do not have a diabetis... and why the device connect to me is not a pump. Well dont get too excited it's not some sort of miracle. I do have diabetes type 1 and had it for over 10 years.
> 
> The guards were aware that im diabetic with a hypo.. and that i might get into coma. They refused to call a manager multiple times. Some staff members pretended to be managers. When the real manager came out he gived me a fake email for complains.
> I managed to get my stuff back after running up to police car and begging them to help me. THANKS GOD THEY HAD SWEETS! All together i spend around 2-3 hours with low sugar till i managed to get to a takeaway that was open.
> 
> My sugar kept jumping all night and this was the craziest thing that ever happened to me. I never though that asking for help could put me in a coma.
> What should i do in this situation?
> When they hold your money and sugar meter and you having a hypo outside because you get kicked out after asking for help?
> I feal that as diabetic i can't go out confortably anywhere.
> 
> Please let me know what would you do in this situation! And if that ever happened to you



Christ , that is one disgusting account.

Thinking on my feet here, did you get the coppers to log the incident ? 

I would DEFINITELY pursue that bar for some sort of recompense based upon neglect. So called "security guards" are licensed, a course which I have done, and believe me they are not supposed to act like that.

At the very least I would generate as much negative publicity for them as is humanly possible.

Surely there is some kind of "discrimination " in all of this ??


----------



## Andrew477

Im not too fussed about the discrimination part. I just never got so close to a coma and i think this was the WOW moment for me. If the police did not had sweet i do not know what would of happened to me... They did not logged it i was really confused at the end and dont recall a lot after i got my bag and left to sort my sugar. sorted my sugar so i can sleep at around 8-9 it was really dificult :/


----------



## Bill Stewardson

Andrew477 said:


> Im not too fussed about the discrimination part. I just never got so close to a coma and i think this was the WOW moment for me. If the police did not had sweet i do not know what would of happened to me... They did not logged it i was really confused at the end and dont recall a lot after i got my bag and left to sort my sugar. sorted my sugar so i can sleep at around 8-9 it was really dificult :/



The next D who goes in there may well end up in a coma or worse.


----------



## Copepod

Andrew477 said:


> Im not too fussed about the discrimination part. I just never got so close to a coma and i think this was the WOW moment for me. If the police did not had sweet i do not know what would of happened to me... They did not logged it i was really confused at the end and dont recall a lot after i got my bag and left to sort my sugar. sorted my sugar so i can sleep at around 8-9 it was really dificult :/


Very bad actions by security guard, but I have to ask why didn't you have any sweets in your pockets, and having tested your blood sugar and discovered a hypo, why take cider to bar, not wallet, to buy a sugary soft drink, or ask a friend to do that, while you stayed with your phone and meter?


----------



## Amigo

I think regardless of what Andrew may have failed to do in a packed nightclub with a hypo, the club staff failed him miserably and dangerously.

I think you should write to the Council Licensing Department expressing your serious concerns about this establishment. That will cause the licensee the necessary amount of aggro he deserves for employing staff like this.


----------



## Andrew477

Copepod said:


> Very bad actions by security guard, but I have to ask why didn't you have any sweets in your pockets, and having tested your blood sugar and discovered a hypo, why take cider to bar, not wallet, to buy a sugary soft drink, or ask a friend to do that, while you stayed with your phone and meter?



I did checked my sugar and my friends offered to help. But i said it will be faster if i just do it myself. I had a cider in my hand because that was the drink i buyed when i came into that building. Not sure why i left my money in my backpack and went to get a soft drink i was confused :/ my sweets where in a bag that was left behind after the security assaulted me because of asking for help. They refused to give it back and they where aware that im having a hypo. Im a bit scared because they asked people for my name but they woudnt give theirs its crazy.


----------



## Andrew477

Amigo said:


> I think regardless of what Andrew may have failed to do in a packed nightclub with a hypo, the club staff failed him miserably and dangerously.
> 
> I think you should write to the Council Licensing Department expressing your serious concerns about this establishment. That will cause the licensee the necessary amount of aggro he deserves for employing staff like this.



Thanks a lot i will definetly do that. Im putting in a report tomorrow in a police. I cant contact the bar as it gived me fake email. Will be contacting the council as well.


----------



## Copepod

Andrew477 said:


> Thanks a lot i will definetly do that. Im putting in a report tomorrow in a police. I cant contact the bar as it gived me fake email.


Write a letter to postal address and send Recorded Delivery to be sure.


----------



## Ljc

One thing we need to remember is that we sometimes/often don't think straight when hypo.  Only last week I felt odd, tested was 2. something,  set timer to test in 15 , tested was lower set timer for 15 , when it beeped I thought perhaps I should eat something.   .
@Andrew477 what happened to you was dreadful, thankfully you're here to tell the tale. Rightly or wrongly I don't expect security to know how to treat a hypo .  imo what they should know is , not everyone who appears drunk is drunk and who to call on, I assume their should be first aiders on duty.
Yes it would be a good idea in future to keep some fast acting carbs in a pocket when out.
I also agree you should put in an official complaint in writing to the management at least. Please let us know how you get on.


----------



## MikeTurin

Copepod said:


> Write a letter to postal address and send Recorded Delivery to be sure.


Agree. I am also going to write to newspapers and going for bad publicity, if you have witnesses and police to corroborate your position it could be a good move to make the venue solve the problem,


----------



## Bill Stewardson

MikeTurin said:


> Agree. I am also going to write to newspapers and going for bad publicity, if you have witnesses and police to corroborate your position it could be a good move to make the venue solve the problem,



Although this may be a little unfair on Andrew, let us not overlook the responsibility to set a precedent here.

Ds who attend large gigs or stuff like that often contact venues prior to the event so that they can take various things inside.

It can work with some thought, maybe some contact with the venue by DUK, and or those who train "security guards" or venue owners associations ??


----------



## Bubbsie

Andrew477 said:


> Hello i got into a really weird situation yesterday. I finally decided to go out with my friends for a few drinks, during the night i had 2 and a half drinks. In one of the busier bars my sugar went down to 2.1 and i went to the bar. I asked one of the security guards who was blocking the way to help me, i informed him that im diabetic type 1 with a hypo he told me to drink the cider i had in my hands and wait. I told him its not possible to know how much sugar it has as it does not have a label. He grabbed me by the neck and kicked me outside.
> 
> Leaving me outside for the worst hour of my life. My sugar was 2.1 before it happened, all my bellonging were inside (sugar meter, money, phone).
> 
> The security guard that assaulted me went back in. And his ''medically trained'' colleague explained me why i do not have a diabetis... and why the device connect to me is not a pump. Well dont get too excited it's not some sort of miracle. I do have diabetes type 1 and had it for over 10 years.
> 
> The guards were aware that im diabetic with a hypo.. and that i might get into coma. They refused to call a manager multiple times. Some staff members pretended to be managers. When the real manager came out he gived me a fake email for complains.
> I managed to get my stuff back after running up to police car and begging them to help me. THANKS GOD THEY HAD SWEETS! All together i spend around 2-3 hours with low sugar till i managed to get to a takeaway that was open.
> 
> My sugar kept jumping all night and this was the craziest thing that ever happened to me. I never though that asking for help could put me in a coma.
> What should i do in this situation?
> When they hold your money and sugar meter and you having a hypo outside because you get kicked out after asking for help?
> I feal that as diabetic i can't go out confortably anywhere.
> 
> Please let me know what would you do in this situation! And if that ever happened to you


Andrew why not post this on a separate thread...I'd be happy to advise...suggest a way that might bring you some resolution...as would other members no doubt...the seriousness of this matter may not be apparent in the current thread...you can post in the general section...it would hopefully get the full attention it needs.


----------



## Bill Stewardson

Bubbsie said:


> Andrew why not post this on a separate thread...I'd be happy to advise...suggest a way that might bring you some resolution...as would other members no doubt...the seriousness of this matter may not be apparent in the current thread...you can post in the general section...it would hopefully get the full attention it needs.



Brilliant advice Andrew.


----------



## Andrew477

Bubbsie said:


> Andrew why not post this on a separate thread...I'd be happy to advise...suggest a way that might bring you some resolution...as would other members no doubt...the seriousness of this matter may not be apparent in the current thread...you can post in the general section...it would hopefully get the full attention it needs.


Thank you i will post it in general now i didnt thinked about it before


----------



## MikeTurin

Bill Stewardson said:


> It can work with some thought, maybe some contact with the venue by DUK, and or those who train "security guards" or venue owners associations ??


I was concened because these security guards aren't trained correctly: they can't tell if a customer is a problemati customer or has a genuine problem. I could guess that these people will react in the same way if a customer breaks a bone or have a stroke, because they are putting the problems outside the venue...


----------



## Bill Stewardson

@Hannah DUK  good morning to Hannah and good morning to everyone else.

Ive been trying to understand why there is such a huge difference in advice given by DNs, GPs, emergency call handlers,  and other medical practitioners regarding living with D.

Also, I'm quite frustrated by the endless answer "I have my template to work to" and it seems that if you don't fit into that template things become a little difficult.

Is there anyone in a relevant position who will take on board my views ?

Thanks.


----------



## MikeTurin

Bill Stewardson said:


> Also, I'm quite frustrated by the endless answer "I have my template to work to" and it seems that if you don't fit into that template things become a little difficult.


By the way isn't in your best work interests to follow a template or a we call it a Flow Chart.
Because if you follow a flow chart your work could be more or less easily substituted with a deck of punched card and a COBOL program (since 1963).


----------



## Bill Stewardson

MikeTurin said:


> By the way isn't in your best work interests to follow a template or a we call it a Flow Chart.
> Because if you follow a flow chart your work could be more or less easily substituted with a deck of punched card and a COBOL program (since 1963).



 I would say that depends on the template and who it is being used upon, plus any lack of flexibility within it.


----------



## Diabetes UK

Hi @Bill Stewardson - thanks for your comments. I believe that you raised a similar point in another thread, which I have responded to here:
https://forum.diabetes.org.uk/boards/threads/today.68177/page-2

But I will offer my response again in brief  The variation of care between healthcare professionals is a key issue that has been identified and raised by the APPG (All-Party Parliamentary Group for Diabetes) and Diabetes UK have been working with the APPG to raise this issue in Parliament. There is a report available on our website which outlines this issue in full: 
https://www.diabetes.org.uk/Global/get-involved/campaigns/APPG report 2016 version for website.pdf


----------



## Kentoldlady

Hello duk and hannah. I asked a question about plant sterols that are added to foods, spreads, yoghurts etc.  Duk advises that we take them but nice advises against it. My question was moved to its own thread, which was great, but duk has not answered. 
I wonder if you could have a look please? Many thanks.


----------



## Diabetes UK

Kentoldlady said:


> Hello duk and hannah. I asked a question about plant sterols that are added to foods, spreads, yoghurts etc.  Duk advises that we take them but nice advises against it. My question was moved to its own thread, which was great, but duk has not answered.
> I wonder if you could have a look please? Many thanks.



Hi there, certainly, I will respond to your thread now: https://forum.diabetes.org.uk/boards/threads/plant-sterols-and-nice-advice.68385/#post-742520


----------



## everydayupsanddowns

@Lez Coupland - I have moved your posts into their own thread so that they should be more visible.

https://forum.diabetes.org.uk/boards/threads/wife-ill-what-should-i-do.68592/


----------



## Nathan

Hi all,

Type 1 for 18 years. My equipment is very dated - still using a Novopen 3 with PenMate 3 which isn't ideal given that the dosage numbers are faded.
My problem is that fear of needles means I'm very reliant on the Penmate (hides the needle from view and springloads the injection), I've tried without it but it's not something I've been able to overcome.

I mentioned the old equipment with nurse and she was able to replace the injection pens with (I think) Novopen 5 however these weren't compatible with the penmate so I went back to using Novopen 3.

At a loss for what to do. With the exception of actually putting the needle into skin I'm fine with injections. Unaware if there is an updated version of Penmate or replacement I could look into? Very much aware that my current equipment could stop working at some point so ideally want to sort it out before then.

I'd appreciate any comments or support!


----------



## Ljc

Hi @Nathan welcome. I've had a quick look on google  I don't know how old the page I was looking at was but it does seem  that
Novo Nordisk still make the Penmate,
It might be worth contacting them

http://www.novonordisk.co.uk/contact-us.html


----------



## Nathan

Thanks Lin, my own searches showed it to be discontinued and the Novopen 3 which screws into it (the penmate is just the springloaded part which hides the needle) has been too. Even tried a few ebay searches a while back!


----------



## AJLang

Would the Novofine Autocover help?
https://www.novonordisk.com/patient...-and-injection-support/NovoFineAutocover.html


----------



## mikeyB

The BD Autoshield pen needle completely hides the needle, and fits most pens. At least two other manufacturers do the same. They are prescribable in Scotland. I've no idea about England


----------



## TheClockworkDodo

I use Novopen Echos with Novofine Autocover needles, @Nathan - I am also unable to see a needle going into skin, and I'm fine with these, though they are a bit long (8mm).  I've tried the BD Autoshield as well - so far as I remember the advantage of that is it's shorter, but the disadvantage is it's wider so you have less control over where the needle goes.


----------



## Tony Fleming

Northerner said:


> ask away


Hi I'm trying to get access to a Dietician but all the healthcare practitioners that I speak to say I can't?? And don't need ?? I want to help myself and lose weight but can't get any advice


----------



## Copepod

Tony Fleming said:


> Hi I'm trying to get access to a Dietician but all the healthcare practitioners that I speak to say I can't?? And don't need ?? I want to help myself and lose weight but can't get any advice


Welcome to the forum Tony Fleming. I'll tag a couple of Diabetes UK staff members, who will be able to  answer your query during normal working hours. @Hannah DUK @Emma Diabetes UK


----------



## AngelCake

Hi to everyone out there!   I have a question:  I was looking through Diabetes UK recipes and was horrified to discover that lots of the recipes have sugar and fruit juices in them;  Am I missing something or am I  not understanding the point of diabetes?   *I am new to diabetes.*


----------



## Copepod

AngelCake said:


> Hi to everyone out there!   I have a question:  I was looking through Diabetes UK recipes and was horrified to discover that lots of the recipes have sugar and fruit juices in them;  Am I missing something or am I  not understanding the point of diabetes?   *I am new to diabetes.*


Welcome to the forum, AngleCake. I'll leave someone paid by Diabetes UK to answer your question about recipes. However, would you like to introduce yourself in Newbies section?


----------



## wendy mckay

Hello All.
I'm sitting here enjoying the last bit of sunshine while I can.....and at the same time thinking about the flu jab. I have never had one, and have not had flu since I was diagnosed with swine flu a few years ago when we had the outbreak. I get the odd cold symptoms and cough but nothing more than that. I have had diabetes for 2 years now and  and was wondering if I should have it. My motto is.....if it's not itchy....dont scratch. Any advice


----------



## Copepod

wendy mckay said:


> Hello All.
> I'm sitting here enjoying the last bit of sunshine while I can.....and at the same time thinking about the flu jab. I have never had one, and have not had flu since I was diagnosed with swine flu a few years ago when we had the outbreak. I get the odd cold symptoms and cough but nothing more than that. I have had diabetes for 2 years now and  and was wondering if I should have it. My motto is.....if it's not itchy....dont scratch. Any advice


My reason for having my flu jab each autumn is that if I don't get flu, I can't pass it to anyone less able to cope with the infection, but who might not be immunised.
Also, I'm getting as much sunshine as possible to build up my vitamin D for winter now, as well.


----------



## Ljc

I have a flu jab every year because I don't relish being ill for  several weeks with it  like I have before.


----------



## everydayupsanddowns

I get mine to earn my GP surgery their QoF points so they get some extra cash. Us lot are expensive to keep


----------



## Diabetes UK

AngelCake said:


> Hi to everyone out there!   I have a question:  I was looking through Diabetes UK recipes and was horrified to discover that lots of the recipes have sugar and fruit juices in them;  Am I missing something or am I  not understanding the point of diabetes?   *I am new to diabetes.*



hi @AngelCake - The recipes on the website are intended as part of a healthy balanced diet and we provide a variety of different recipes for our varying audiences. While we all need to cut down on added or “free” sugars, these recipes can be enjoyed as part of balanced diet. Hope that answers your question?

https://www.diabetes.org.uk/Guide-t...ith-diabetes/What-is-a-healthy-balanced-diet/
https://www.diabetes.org.uk/Guide-t...drates-and-diabetes/how-to-cut-down-on-sugar/


----------



## Ljc

AngelCake said:


> Hi to everyone out there!   I have a question:  I was looking through Diabetes UK recipes and was horrified to discover that lots of the recipes have sugar and fruit juices in them;  Am I missing something or am I  not understanding the point of diabetes?   *I am new to diabetes.*


Hi @AngelCake welcome. TBH I feel the same.
You could have a look at this thread , *what did you eat yesterday *. https://forum.diabetes.org.uk/boards/threads/what-did-you-eat-yesterday.30349/

And recipes the some of our members have created https://forum.diabetes.org.uk/boards/forums/recipes.21/
Both can be found on the food/carb queries and recipe forum


----------



## AngelCake

wendy mckay said:


> Hello All.
> I'm sitting here enjoying the last bit of sunshine while I can.....and at the same time thinking about the flu jab. I have never had one, and have not had flu since I was diagnosed with swine flu a few years ago when we had the outbreak. I get the odd cold symptoms and cough but nothing more than that. I have had diabetes for 2 years now and  and was wondering if I should have it. My motto is.....if it's not itchy....dont scratch. Any advice



I once had the flu jab and I got the worst flu ever *I thought I was going to die;*  and I have declined the flu jab every year as I'm better off wihtout it.   It's all trial and error and depends on how your body responds to it.  Personally, I'm not keen to have flu put it on my body.


----------



## khskel

AngelCake said:


> I once had the flu jab and I got the worst flu ever *I thought I was going to die;*  and I have declined the flu jab every year as I'm better off wihtout it.   It's all trial and error and depends on how your body responds to it.  Personally, I'm not keen to have flu put it on my body.


The flu vaccine is not live, you are not putting flu into your body.


----------



## 2Bornot2B

Don't know what I'm doing wrong! Can't get any replies to my questions, I'm always told that they have gone to another tread, but ho


----------



## Wirrallass

2Bornot2B said:


> Don't know what I'm doing wrong! Can't get any replies to my questions, I'm always told that they have gone to another tread, but ho


@2Bornot2B Hi ~ what questions do you want answering and which thread & date did you initially post your questions please?  @Northerner may be able to help sort it out for you when you supply details, thanks.


----------



## Ralph-YK

2Bornot2B said:


> Don't know what I'm doing wrong! Can't get any replies to my questions, I'm always told that they have gone to another tread, but ho


I got no idea what this means. Can you point us to some of your posts.


----------



## Ralph-YK

Why are you asking in this (the Asking Diabetes UK) thread? You've got no posts in here going back the last 3 months.


----------



## Ljc

2Bornot2B said:


> Don't know what I'm doing wrong! Can't get any replies to my questions, I'm always told that they have gone to another tread, but ho


Hi 2Born2B I've had a look on your profile page, and found these posts by yourself. I have no idea if these are the ones you mean though. 
https://forum.diabetes.org.uk/boards/search/9455559/


----------



## Ralph-YK

Ljc said:


> Hi 2Born2B I've had a look on your profile page, and found these posts by yourself. I have no idea if these are the ones you mean though.
> https://forum.diabetes.org.uk/boards/search/9455559/



I get the above error from that link.  I also tried looking at their profile earlier, and got an error then. Their profile is set not to share it said.


----------



## Wirrallass

Lin & Ralph I've just tried opening that link too and the same Error message appears!!! Maybe @Hannah DUK can help out here please? Thanks


----------



## Wirrallass

@2Bornot2B
SUCCESS! I have found your original Thread *Diabetic Neuropathy soon after diagnosis* dated  31 August 2017.  It is on Page 7 of 1177 in General Messageboard.
You can find it by clicking on General messageboard then keep scrolling down til you find the title of your thread  on Page 7 ~ or by using the search box at the top of the page to the right and type in the title of your thread.

Hope this helps to prevent you tearing your hair out


----------



## Copepod

@Ljc @Ralph-YK @wirralass - as it's the weekend, @Hannah DUK won't be around. Thanks for sorting the forum technical problem among yourselves!


----------



## Wirrallass

@Copepod Hi ~ Thanks for your post.

Hoping the following is read in the humourous vein in which it is written
"We may be Diabetics but we sure ain't Diabetic brainless!!" 
Only too happy to oblige in Hannah's absence.


----------



## Ralph-YK

I'm still not clean what's going on, other than 2Born2B isn't getting any answers to their posts.
From the error message I'm taking it that 2Born2B can see their own profile. It's the rest of us who can't. (??? Or some of us :/)
To find a post you've made there's a couple of way. One way is:
All threads your post in are automatically watched. So, on the forum menu bar click Forums. Underneath you get another menu bar, with New Posts at the end. Before that there is Watched Threads, choose this one. Half ways down the page or so, in little writing it'll say All watched threads. Choose that.
You'll now see all the watched (ones you've posted in) threads.


----------



## Ralph-YK

There's another way, that doesn't rely on threads being watched. And you can show all threads you've posted in. Or threads you started.
Go to your own profile. Click on Posting. Scroll down till you see your profile pic. Just above that see:
Find all content
And
Find all threads.
Pick one of those.


----------



## Wirrallass

Ralph-YK said:


> There's another way, that doesn't rely on threads being watched. And you can show all threads you've posted in. Or threads you started.
> Go to your own profile. Click on Posting. Scroll down till you see your profile pic. Just above that see:
> Find all content
> And
> Find all threads.
> Pick one of those.


Hi Ralph, you haven't lost your marbles by the way!
I just used the search box top right of page ~ searched for 2Bornot2B ~ and woohoo found a list of 18 posts relating to 2B's posts  ~ saw that @everydayupsanddowns had transferred 2B's post from Ask Diabetes UK to a thread of its own ~ you get it now?!!!! 
It appears 2B's not picking up her alerts otherwise she would have commented here! Well I'd like think so after all the **** Ljc yourself & myself did in an effort to help her! Sorry 2Bornot2B no offence meant.


----------



## Ralph-YK

wirralass said:


> I just used the search box top right of page ~ searched for 2Bornot2B ~


{*Looks*}  Oh, yes. lol


----------



## Diabetes UK

Hello all - thank you kindly for jumping into action and checking all potential technical issues there!
Just to clarify - I am able to view @2Bornot2B 's threads so just checking there are no further technical issues being experienced and it was a case of a thread being moved?
Let me know if there are any other errors and I will look into it..
Thanks!


----------



## Kentoldlady

Hannah DUK said:


> Hi there, certainly, I will respond to your thread now: https://forum.diabetes.org.uk/boards/threads/plant-sterols-and-nice-advice.68385/#post-742520



Hello, thank you for the response, in which you ask me to post the link to the article on this site.  For some reason I'm not able to post the link but if you just put "cholesterol and diabetes" into the duk search box its the first article that pops up.  I hope thats ok? Thanks.


----------



## Marybrock

Northerner said:


> 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!


Hi


----------



## SB2015

Hi Hannah

I was at my local hospital on a DUK awareness stand yesterday.  I felt harangued when I was approached by one of the Consultants who gave a diatribe about the gut biome and the dangers of the Eat Well Plate.  I smiled and nodded my way through this until she ran up of steam, but it left me wondering...

... does DUK have any plans to review the Eat Well Plate?  I know for myself it  does not represent a good diet for me, sa the carbs are simple and bigger than I would want in any meal (I am nt a low carb person).  I
The Plate advises on the proportions of each food type, but I feel it would be better if the amount represented on the plate was a lot smaller.  Not everyone understands proportions and interpret as information about the amount to eat.


----------



## Rams

Hannah DUK said:


> 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.


----------



## Rams

Have a friend who has been treated for type1 diabetes for the last 7 years when all along he's had type2 would this have any effect on his health


----------



## mikeyB

No, Rams, it would have no effect at all on his long term health. And welcome to the forum


----------



## Northerner

Rams said:


> Have a friend who has been treated for type1 diabetes for the last 7 years when all along he's had type2 would this have any effect on his health


Hi @Rams, welcome to the forum  It is unusual for someone's diagnosis to change from Type 1 to Type 2, do you know why the diagnosis was changed?  It's relatively common for someone to be diagnosed as Type 2 when they are, in fact, Type 1. 

The main concern is whether the treatment he was receiving was working, and whether that treatment has now been changed. Type 1 treatment involves injecting insulin, which can be an effective treatment for both types in some cases, but it's far less likely that Type 2 treatment will work for someone who is actually Type 1.


----------



## Diabetes UK

SB2015 said:


> Hi Hannah
> 
> I was at my local hospital on a DUK awareness stand yesterday.  I felt harangued when I was approached by one of the Consultants who gave a diatribe about the gut biome and the dangers of the Eat Well Plate.  I smiled and nodded my way through this until she ran up of steam, but it left me wondering...
> 
> ... does DUK have any plans to review the Eat Well Plate?  I know for myself it  does not represent a good diet for me, sa the carbs are simple and bigger than I would want in any meal (I am nt a low carb person).  I
> The Plate advises on the proportions of each food type, but I feel it would be better if the amount represented on the plate was a lot smaller.  Not everyone understands proportions and interpret as information about the amount to eat.



Hi,

That sounds frustrating! We don’t really speak about the Eatwell Guide when we talk about healthy eating, rather we talk about having a healthy balanced diet that’s tailored to you.  The Eatwell Plate, created by the Foods Standard Agency,  is designed to be a general piece of advice for the whole of the UK, and it doesn’t replace individualized advice, but can be a useful starting point for some people looking to improve their food choices.

We definitely agree that the right portion sizes can be really difficult to judge, and everyone’s dietary needs are very different. We encourage people to find what works for them and to seek tailored advice from a registered dietitian, ideally one that specialises in diabetes.

Here is our info about a balanced diet:
https://www.diabetes.org.uk/guide-t...ith-diabetes/what-is-a-healthy-balanced-diet/

Thanks


----------



## Rams

Northerner said:


> Hi @Rams, welcome to the forum  It is unusual for someone's diagnosis to change from Type 1 to Type 2, do you know why the diagnosis was changed?  It's relatively common for someone to be diagnosed as Type 2 when they are, in fact, Type 1.
> 
> The main concern is whether the treatment he was receiving was working, and whether that treatment has now been changed. Type 1 treatment involves injecting insulin, which can be an effective treatment for both types in some cases, but it's far less likely that Type 2 treatment will work for someone who is actually Type 1.


Thanks for you're reply northern he was put on insulin from the start then 4yrs later metformin now he has heart decease high blood pressure what I have been reading says it should have been metformin first and life style changes he was told type1i think they have really messed him up


----------



## Ralph-YK

Rams said:


> he was put on insulin from the start then 4yrs later metformin ... it should have been metformin first


I believe as a general rule, T2s would be on metformin first.  However, I believe some T2s are put on insulin quite quickly to get the blood sugars down.  T2s may need to inject insulin, not just T1s.

Of course, that's not to defend the misdiagnoses.


----------



## mikeyB

Rams said:


> Thanks for you're reply northern he was put on insulin from the start then 4yrs later metformin now he has heart decease high blood pressure what I have been reading says it should have been metformin first and life style changes he was told type1i think they have really messed him up


Being on insulin doesn’t mess you up. It certainly doesn’t give you heart disease or high blood pressure. Life style changes go with both types. You surely don’t think Type 1s live it up?


----------



## Rams

Ralph-YK said:


> I believe as a general rule, T2s would be on metformin first.  However, I believe some T2s are put on insulin quite quickly to get the blood sugars down.  T2s may need to inject insulin, not just T1s.
> 
> Of course, that's not to defend the misdiagnoses.


----------



## Rams

Yk I think its the misdiagnosis that is doing his head in type 2 he could reversed being told type1 you've got it for life .so now its been confirmed type2 do you think he has a chance to reverse it


----------



## Ralph-YK

Rams said:


> so now its been confirmed type2 do you think he has a chance to reverse it


At a diabetes support group recently we had the question "can you overcome diabetes?"
If I remember right, this was clarified to be "stop being diabetic". The doctor there said they don't say " not diabetic any more". They may say in remission.
For some it's possible to come of medication and close on "normal" HbA1c/blood sugar levels.
So, it depends on what you mean by reverse. Getting blood sugars down and coming off meds. Yes, people have done that.
Of course, that depends on his condition. He may have a lack of insulin and will continue to need to inject.


----------



## 2Bornot2B

I'm having many health problems, muscle pain in my right thigh which is worse when I put pressure on it, I'm taking statins which I believe could be the cause. I understand that doctors believe that these drugs are  beneficial to help control T2 diabetics. 
I've also in the last year suffered with   Phlebitis and  Rosacara all these conditions are new to me. 
Can anyone tell me if these are related to being diabetic.
My blood sugars are very erratic going between 4.1 to 13.4.
I had a blood test on 17th of November but haven't had any results.    I'm taking 5mg linagliptin daily. 
I still question my  diagnosis which was purely on the result of a regular blood test. I have never had any of the usual symtoms  associated with diabetes. Any comments would be appreciated.


----------



## mikeyB

Well, 2B, the answer to your first question is no, those conditions aren’t associated with or caused by diabetes. As for questioning your diagnosis, having BG results between 4.1 to 13.4 pretty much confirms the diagnosis. 

Statins can cause muscle pain, but it’s not usually localised to a single area. You should perhaps speak to your doctor about this. Statins don’t control diabetes, they are prescribed to lower cholesterol levels.

And finally, your regular blood test might well have included a request for an HbA1c measurement, which measures an average level of glucose in the blood over the previous 3 months or so. Over a certain level confirms the diagnosis. 

Have you seen a diabetes nurse in the surgery?


----------



## trophywench

I understand some  rosacea sufferers may see some relief with a longish course of certain antibiotics.  Haven't a clue what might happen when the person I know who's on this at the moment, stops taking them.


----------



## Unknownlegend

Hi All just been to my diabetic clinic with HBa1 result of 8. They said they were not happy and want me to get down to 6. Now for me to really get down this low I risk having hypos, I know my own body and this will happen. Then if they ask me at clinic if I've had hypos and I be honest, they are obliged to inform the dvla, who may well remove my lisence and hence cannot work. My job is international Operations Manager which involves a lot of global travel. I worry when I'm in hotels on my own about comas etc. What is the answer?


----------



## Robin

Unknownlegend said:


> Hi All just been to my diabetic clinic with HBa1 result of 8. They said they were not happy and want me to get down to 6. Now for me to really get down this low I risk having hypos, I know my own body and this will happen. Then if they ask me at clinic if I've had hypos and I be honest, they are obliged to inform the dvla, who may well remove my lisence and hence cannot work. My job is international Operations Manager which involves a lot of global travel. I worry when I'm in hotels on my own about comas etc. What is the answer?


Hello, and welcome to the forum. I can see why your clinic are wanting you to reduce your HbA1c if it's above 6.5 (48 in the new system) as this is the level recommended by NICE as carrying a lower risk of complications. But they shouldn't be issuing a diktat, but should be helping you to achieve this safely.
Having hypos ( though not ideal, but we all have them occasionally) is not in itself something that your clinic has to inform the DVLA about. I can see why you are concerned, but it would only affect your licence if you had lost your hypo awareness, or had more than two hypos in one year that needed outside assistance. Do you have hypo awareness?
(Tell us a bit more about your problems with hypos, what diet you follow, what insulin regime you are on, and we can try and help with suggestions for avoiding them.)
Your job sounds high powered, would your company be prepared to fund or help fund a CGM for you, which would sound an alarm if you went hypo while alone?


----------



## Martin Canty

Unknownlegend said:


> Hi All just been to my diabetic clinic with HBa1 result of 8. They said they were not happy and want me to get down to 6. Now for me to really get down this low I risk having hypos, I know my own body and this will happen. Then if they ask me at clinic if I've had hypos and I be honest, they are obliged to inform the dvla, who may well remove my lisence and hence cannot work. My job is international Operations Manager which involves a lot of global travel. I worry when I'm in hotels on my own about comas etc. What is the answer?


Assuming that you are T2 here, but unless you are on hypo inducing medications (metformin is not one of them) then there is minimal risk of Hypo's. I am assuming that the A1c numbers were presented to you in percentage, in which case 6 is fine, my last one was 5.5%.
Perhaps you can give some background so we have a fuller picture.
As for DVLA rules I would defer to someone who actually has experience of them as I developed D long after I left the UK


----------



## trophywench

Errr - OK 8's too high.  So - exactly what help are the people who are being so critical of you, giving you, to reduce it?  What have they asked you to do, specifically in order TO get a lower test result?


----------



## Shannon Le Roux

I have had Kenalog steroid injections in my both legs on Tuesday last week and my sugar levels sky rocketed and I am now taking extra insulin and Nova Rapid.  Does anyone know how long this effect will last I am now on my 8th day.


----------



## grovesy

Shannon Le Roux said:


> I have had Kenalog steroid injections in my both legs on Tuesday last week and my sugar levels sky rocketed and I am now taking extra insulin and Nova Rapid.  Does anyone know how long this effect will last I am now on my 8th day.


It varies from person to person.


----------



## David Heao

Hannah DUK said:


> 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.


HOW DOES IT WORK i WANT TO ASK A QUESTION AND REACH AS MANY PEOPLE AS POSSIBLE


----------



## Shannon Le Roux

have had Kenalog steroid injections in my both legs on Tuesday last week and my sugar levels sky rocketed and I am now taking extra insulin and Nova Rapid. Does anyone know how long this effect will last I am now on my 8th day.


----------



## Martin Canty

David Heao said:


> HOW DOES IT WORK i WANT TO ASK A QUESTION AND REACH AS MANY PEOPLE AS POSSIBLE


Hi David, if you post questions to the "General Message-board" then you will likely get an answer quickly (depending on time of day)


----------



## trophywench

Shannon - perhaps most people haven't had those jabs so can't answer your question.  Why don't you ring your D clinic?  I had a steroid jab (no idea what name) in a shoulder 20-odd years ago and that didn't affect my BG at all after that day - didn't help my shoulder either LOL

Even needing to use steroid cream somewhere on their body affects some people - so I'd say @grovesey was correct!


----------



## SB2015

Shannon Le Roux said:


> have had Kenalog steroid injections in my both legs on Tuesday last week and my sugar levels sky rocketed and I am now taking extra insulin and Nova Rapid. Does anyone know how long this effect will last I am now on my 8th day.


Having had steroid injections the raised BG has lasted for two weeks for me, but on another occasion just a few days.  I now always ask how much they are giving and keep a record, so that I have more idea of what to expect.  The more they give me the more insulin I need and the longer it lasts, but it varies for each person.


----------



## mikeyB

It does depend on the dosage of steroids. When I had an injection directly into my hip joint, I had to increase my long acting by 50% and boluses the same for just over two weeks. Tennis elbow, about 5 days. High dose oral steroids, again, up insulin by 50%, and take all the steroid tablets as a single dose in the morning.

That sounds neat and systematic, but it’s just the basis, it never runs perfectly. But in the long game, that doesn’t really matter very much.


----------



## Henry Barrasford

Hannah DUK said:


> 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.


Hi Hannah as a newbie my name is Henry and as a chef I must admit I don’t know how much sugar a day a diabetic can have? Also is there to much sugar in grapefruit to serve for breakfast. Kind regards


----------



## Northerner

Henry Barrasford said:


> Hi Hannah as a newbie my name is Henry and as a chef I must admit I don’t know how much sugar a day a diabetic can have? Also is there to much sugar in grapefruit to serve for breakfast. Kind regards


Hi Henry, welcome to the forum  Diabetes is not just about sugar, which as you will know is a form of carbohydrate - all forms of carbohydrate will cause an increase in blood glucose levels, so things like rice, bread, potatoes, pasta etc. all need to be kept to a level that the person with diabetes can tolerate well. This tolerance can vary from person to person, however, so there is no simple 'amount' of carbohydrates a person should consume, it will depend on the person, whether they are on any medication, their activity levels, and a number of other factors. Some carbs will raise levels faster than others - sugar is one that will raise them quickly, as is white bread. 

Is it you that has diabetes, or are you asking in a professional capacity in order to learn what food you can safely serve to someone with diabetes? I'd suggest looking at the GL (Glycaemic Load) diet, which aims to combine foods so that their overall impact will be a slow and steady release - The GL Diet for Dummies is a very good introduction


----------



## Henry Barrasford

No I’m not a diabetic but my wife, one of my cooks and I have 6 residents that are too. I’m making it my priority this year to learn and gain great knowledge from people like yourself as I’m a bit  ignorant on this subject - So many thanks for accepting me to the group. The reason I spoke about grapefruit is purely professional as colleague just mention the sugar in this fruit. However I have just gained knowledge from you guys saying it could be down to the medication. I was scratching my head as the grapefruit only had roughly 2gms of sugar.


----------



## SB2015

Hi Henry

There are some tablets for which patients are told not to eat grapefruit, since it has an impact on the action of the medication.  I now limit myself to a celebratory 1/2 grapefruit on Christmas Day and leave out the tablet the night before.

As you say there is also the fructose in fruit which, along with all carbohydrates, will be converted to glucose once inside us and released into the blood stream.  Fresh fruit is one of the things that will raise a person’s blood glucose level, but not quite as quickly as a fruit juice.  For that reason juices are often limited by some people, me included, as a treatment for a dangerously low blood glucose, often called a hypo.

Great that you are taking an interest in this in your professional capacity.  Keep asking and we will try to help.


----------



## trophywench

I wish very much that all chefs took such an interest Henry!  Our eldest daughter is a chef and a number of years back took a job where one of the other chefs was T1 - only to discover PDQ that not only the rest of the staff hadn't a clue - neither did the bloke in question.  Diagnosed as a child - he just sort of got overlooked - I'm older, but been there done that - as many of us long-timers were and still are.  Between us - her 'on the ground' and me 'remotely' not only sorted his hypos at work out (and trained the rest to recognise them and respond INSTANTLY) - but got him to ask the right questions (helped that we were at the same hospital clinic)  Not only did we get him to ask to go on a carb counting/dose adjustment course, but encouraged him to ask for a pump - he did and has always done a heck of a lot better since then.

Helped by daughter, who grew up not only with her little sis in tow, but also little sister's BF, diagnosed D when she was 3!

There's a lot of random kitchen staff at a pub in Dunchurch now, who know how to respond when we're 'off' LOL


----------



## Steevo

Hi Hannah

could we have a topic(s) so people can state whether they are getting the Freestyle Libre free on the NHS particulary so people can state the name of the their local NHS trust.
So far our doctor nor our diabetes contact are bothering to get back to us, any emails sent to the local trust just do not get a reply nobody seems bothered or wish to pursue, there is an article in todays sunday daily mail stating how the NHS are sitting on this with a photo of the prime minster who uses one but no doubt she can afford them easy.


----------



## trophywench

Hannah doesn't run the forum Steevo - and if you want to start such a topic - just start one!


----------



## Diabetes UK

Hi @Steevo - yes, please do start a thread as trophywench has mentioned 
Just got to 'General Messageboard' and 'Post New Thread'. Would be interesting to hear if any members on here have receives Flash on the NHS.


----------



## Diabetes UK

Steevo said:


> Hi Hannah
> 
> could we have a topic(s) so people can state whether they are getting the Freestyle Libre free on the NHS particulary so people can state the name of the their local NHS trust.
> So far our doctor nor our diabetes contact are bothering to get back to us, any emails sent to the local trust just do not get a reply nobody seems bothered or wish to pursue, there is an article in todays sunday daily mail stating how the NHS are sitting on this with a photo of the prime minster who uses one but no doubt she can afford them easy.



Today, we have launched a digital map which shows which areas we know have to have made flash available, which have not, and which are yet to decide. Thought you may find it interesting 
https://www.diabetes.org.uk/get_involved/campaigning/flash-glucose-monitoring


----------



## Steevo

thanks will do, the map is useful, Grey for us so no policy yet formed for my area, having perused a few marked as "available" and their attached policy looks to be all same/similar policies why this can't be UK wide.............looks to be very strict criteria as well with follow up and possibilties of improvement seeing the Libre removed as well.


----------



## Sheila Ashley

Dear Hannah
my father has had type 1 diabetes for over 50 years. He is currently 79 and was recently diagnosed with Alzheimer's. I'm concerned that he will soon lose the ability to monitor his blood sugar levels and administer his insulin. Is there any technology available that can measure blood sugar levels and administer appropriate levels of insulin automatically? 
Many thanks
Sheila


----------



## Steevo

Sheila, yes there are, possibly Insulin Pumps but there are more qualified people on here to help you than me and your local diabetic clinic should be advising you as well.


----------



## Cityblow22

Hi Everyone (1st post for me)

A bit of history....

I've been a diabetic for 10 years now type two. Was originally just on metformin 1g then 2g then after 7 years or so added sitagliptin 100mg. my HB1c started at 6 in old money and steadily went up until last year it was 65 in new money. I was a regular weekend drinker since my teens but stopped drinking completely 25/12/2016. I am now 44. 2016 not long after I gave up alcohol my HB1c went to 6.3 in old money but my recent test (before Christmas 2017 and April 2017) showed it had gone up to 65 in new money. My weight is 120kg I'm 5'9" and have been this weight for at least 15 years. I'm not a big sweet eater I just tend to eat a large main course but that's it. I don't snack at all between meal times.

Change in medication to Lyxumia

My doctor put me on Lyxumia 10 then 20mg in December 2017. But I've been regularly checking my levels and my glucose is always 10-11 first thing in the morning before breakfast so the Lyxumia is not having any affect. I'm still on sitagliptin and metformin 2g daily as well.

doctors appointment Jan 2018

I'm seeing my diabetic doctor this week and I'd like to try Invokana or foxigia with victoza and metformin. Is this possible or can I only take either victoza or Invokana? Has anyone else here been put on this combination?

I do not want to take insulin because I am a safety critical rail worker and would not be allowed to work then.

Ultimately I need to loose weight and Invokana/victoza will hopefully do that in combination with my diet and exercise routine.

Just wonder what your thoughts are on this?

further info...
I have a artificial aortic Heart valve and take warfarin to control my coagulation (I self test for this) and a slightly reduced heart function because of this.


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## Sheila Ashley

Steevo said:


> Sheila, yes there are, possibly Insulin Pumps but there are more qualified people on here to help you than me and your local diabetic clinic should be advising you as well.


Thanks Steevo. I will check out insulin pumps and also see if I can find a local diabetic clinic. I don’t live near my father, but spoke to my stepmother last night and she needs support as his Carer. Both of us can see this will become a serious issue but so far no one has given her any useful advice


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## Robin

Sheila Ashley said:


> Thanks Steevo. I will check out insulin pumps and also see if I can find a local diabetic clinic. I don’t live near my father, but spoke to my stepmother last night and she needs support as his Carer. Both of us can see this will become a serious issue but so far no one has given her any useful advice


Just a note of caution, there hasn't been invented yet a pump that will do it all for you, in terms of reading blood glucose and delivering insulin automatically. There still has to be human input to deliver mealtime doses of insulin, (although the machine will help you with the maths when you calculate the dose.)


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## Diabetes UK

Cityblow22 said:


> Hi Everyone (1st post for me)
> 
> A bit of history....
> 
> I've been a diabetic for 10 years now type two. Was originally just on metformin 1g then 2g then after 7 years or so added sitagliptin 100mg. my HB1c started at 6 in old money and steadily went up until last year it was 65 in new money. I was a regular weekend drinker since my teens but stopped drinking completely 25/12/2016. I am now 44. 2016 not long after I gave up alcohol my HB1c went to 6.3 in old money but my recent test (before Christmas 2017 and April 2017) showed it had gone up to 65 in new money. My weight is 120kg I'm 5'9" and have been this weight for at least 15 years. I'm not a big sweet eater I just tend to eat a large main course but that's it. I don't snack at all between meal times.



@Cityblow22 Welcome to the forum. I think it would be helpful for you to start your own thread to introduce yourself, so that your post is more noticeable and you can get better responses.
Just go to 'Newbies say hello...' here - https://forum.diabetes.org.uk/boards/forums/newbies-say-hello-here.12/
Then select 'Post New Thread'. There are lots of well-informed folk on here who may be able to offer a bit of guidance.


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## Sheila Ashley

Robin said:


> Just a note of caution, there hasn't been invented yet a pump that will do it all for you, in terms of reading blood glucose and delivering insulin automatically. There still has to be human input to deliver mealtime doses of insulin, (although the machine will help you with the maths when you calculate the dose.)


Ah - that’s good to know. Thanks Robin.


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## Diabetes UK

Sheila Ashley said:


> Dear Hannah
> my father has had type 1 diabetes for over 50 years. He is currently 79 and was recently diagnosed with Alzheimer's. I'm concerned that he will soon lose the ability to monitor his blood sugar levels and administer his insulin. Is there any technology available that can measure blood sugar levels and administer appropriate levels of insulin automatically?
> Many thanks
> Sheila



Hi Shelia, pumps and cgm meters are possibilities but as @Robin mentioned, pumps are not automatic and still requires management of some kind.
It may be that your father would need a care plan in place later down the line if he reaches a stage where he is unable to manage his diabetes by himself, something that you would need to discuss with adult social services in your area. You might want to start your own thread in 'Newbies say hello..' as it may get more reponses from anyone who may have had a similar experience?

The Diabetes UK advocacy team may also be able to advise on accessing care and finding the right support for your father so may be worth getting in touch? https://www.diabetes.org.uk/how_we_help/helpline/your-rights

Also, it could be helpful to contact Altzeimers Society to see what information they have?  They also have a really supportive online forum  - so there may be individuals who has also supported someone with managing diabetes or other health conditions alongside Altzeimers?
https://www.alzheimers.org.uk/info/20007/types_of_dementia/2/alzheimers_disease


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## Sheila Ashley

Hannah DUK said:


> Hi Shelia, pumps and cgm meters are possibilities but as @Robin mentioned, pumps are not automatic and still requires management of some kind.
> It may be that your father would need a care plan in place later down the line if he reaches a stage where he is unable to manage his diabetes by himself, something that you would need to discuss with adult social services in your area. You might want to start your own thread in 'Newbies say hello..' as it may get more reponses from anyone who may have had a similar experience?
> 
> The Diabetes UK advocacy team may also be able to advise on accessing care and finding the right support for your father so may be worth getting in touch? https://www.diabetes.org.uk/how_we_help/helpline/your-rights
> 
> Also, it could be helpful to contact Altzeimers Society to see what information they have?  They also have a really supportive online forum  - so there may be individuals who has also supported someone with managing diabetes or other health conditions alongside Altzeimers?
> https://www.alzheimers.org.uk/info/20007/types_of_dementia/2/alzheimers_disease


Thank you Hannah. I've posted in Newbies and will now contact the two orgs you mention.


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## Deleted member 18634

Steevo said:


> Hi Hannah
> 
> could we have a topic(s) so people can state whether they are getting the Freestyle Libre free on the NHS particulary so people can state the name of the their local NHS trust.
> So far our doctor nor our diabetes contact are bothering to get back to us, any emails sent to the local trust just do not get a reply nobody seems bothered or wish to pursue, there is an article in todays sunday daily mail stating how the NHS are sitting on this with a photo of the prime minster who uses one but no doubt she can afford them easy.




The flash monitoring advocacy packs and guides are now up on the webpage in PDF format : 

https://www.diabetes.org.uk/get_involved/campaigning/flash-glucose-monitoring


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## missemma3

Hi! I'm newly registered to talk on the forum even though I have had diabetes for nearly 24 years! (Should have signed up sooner!) I was wondering, how do I start a forum topic of my own (if I can) because I want to know what other Type 1's have experienced in terms of discrimination within the work place. I began work as soon as I finished my A levels over 10 years ago and this was within the healthcare sector, and the amount of negativity I've encountered from actual doctors/nurses/dentists is CRAZY. 

So I really wanted to start a discussion because I wanted to find out if others have experienced the same, and in what setting/area to hopefully start a movement to challenge the inequality we potentially face for a condition we did not choose to have. #Timesup shouldn't just be for sexual harassment... it should be for everything


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## robert@fm

missemma3 said:


> I was wondering, how do I start a forum topic of my own (if I can) because I want to know what other Type 1's have experienced in terms of discrimination within the work place. I began work as soon as I finished my A levels over 10 years ago and this was within the healthcare sector, and the amount of negativity I've encountered from actual doctors/nurses/dentists is CRAZY.
> 
> So I really wanted to start a discussion because I wanted to find out if others have experienced the same, and in what setting/area to hopefully start a movement to challenge the inequality we potentially face for a condition we did not choose to have. #Timesup shouldn't just be for sexual harassment... it should be for everything



Firstly, welcome to the forum!  As you probably already know, this is a great place to be.

Re. your specific query, for the "where" part the General Messageboard is probably the most appropriate. As for "how", every forum here has a large cyan button at top right saying "Post New Thread", and you just click that and it should be simple.


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## missemma3

robert@fm said:


> Firstly, welcome to the forum!  As you probably already know, this is a great place to be.
> 
> Re. your specific query, for the "where" part the General Messageboard is probably the most appropriate. As for "how", every forum here has a large cyan button at top right saying "Post New Thread", and you just click that and it should be simple.




I'm so confused about that last part with all the crossed out parts!  But if I've made lots of spelling and grammatical errors I really do apologise, I've become horribly reliant on my phone for sorting it for me (guilty pleasure), but thankyou for replying and I found the button I needed to start a thread


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## robert@fm

missemma3 said:


> I'm so confused about that last part with all the crossed out parts!


That's just my forum signature, in which I parody the all-too-common "I never make mistakes" attitude.  No need to worry, it wasn't part of my reply as such.


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## missemma3

Ahhh I'm with you! I just worried I'd made a tonne of mistakes! Thankyou for replying to me though. So what brought you to these parts of the web? Are you/family member a diabetic? If so how long and what's your story? I've had this condition for 24 years and I've never properly reached out before untill now


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## trophywench

Seriously - has not even ONE question been asked of DUK for 12 months?

Well I have one now anyway.

How often are we (diabetics) allowed to have free NHS eyesight checks when we don't seem to have any new anything happening?


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## TheClockworkDodo

I can answer that one - my optician will see me for free once a year indefinitely but if I want to have eyesight checks any more frequently than once a year I have to pay (I once tried to get an appointment a month early for some reason and they wouldn't do it, unless I paid).


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## Bronco Billy

@trophywench, hopefully, this link answers your question.

https://www.nhs.uk/common-health-qu...nts/how-often-can-i-have-a-free-nhs-eye-test/


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## Robin

Bronco Billy said:


> @trophywench, hopefully, this link answers your question.
> 
> https://www.nhs.uk/common-health-qu...nts/how-often-can-i-have-a-free-nhs-eye-test/


That NHS advice page was last reviewed in 2016. I was told by my local optician (Specsavers) a couple of years ago, that they were now restricted to every two years. They said there had been discussions as to whether people with diabetes should be offered retinal screening less often, or sight checks less often, and it had been decided that retinal screening was more important to keep annually. I was reassured that if I thought my sight had changed, I could have a test at any time, and if there had been a change, there would be no charge.


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## trophywench

Sneaky wotsits - dunno how this escaped me, except by 2016 I was well into cataract country so I expect my optician decided being as I was diabetic, to still see me every 12 months so I was unaware that if I didn't have em I'd be just the same as anyone else without D.

However - I definitely would prefer to keep my retinopathy screening every 12 months - knowing that if I happen to have an eyesight prob - my optician will see me between times anyway NP.

Will be interesting to see if I get a 'reminder' for an eye test from the optician this summer, since I last had them tested last summer once the eye clinic had signed me off following my second cataract removal !  Won't be holding my breath LOL


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## TheClockworkDodo

Interesting, it looks as though different opticians are interpreting the rules differently.  It's every 2 years for people without diabetes (or other relevant conditions) but whether diabetics are seen every 2 years or less frequently seems to be down to the individual optician.  Jenny, I think you will be OK because of the cataracts (and if you're not you could change optician!) - because I've only just had my free eye test, almost exactly a year after I last had one, so I'm definitely still getting a free test every year.  But my Mum has glaucoma so they are taking that into account as well as my diabetes.


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## Ralph-YK

My opticians started doing me every year, because I got onto them about it.  Then after a couple of years they went to every two years, without telling me.  When I went in, I was told that it was because they thought I was in a good position.  I could still have a check after a year if I was concerned.  I can still have one yearly if I want.  I'd have to ask for it.


Robin said:


> I was reassured that if I thought my sight had changed, I could have a test at any time, and if there had been a change, there would be no charge.


I was told that a Long time ago (before I was diabetic).  An important point is that if there was no change, then I would have been charged.  That was as a non diabetic.


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## Ditto

Mum's 85 in March so now Specsavers see her once a year, but I'm still every two years as far as I know. I must check that out come to think of it... 

I don't have any questions. I know it all.


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## trophywench

Hi Gwen

Just read this article quoting DUK etc.

Observe the illustrations - and yes I know they're most likely 'stock' photos the Telegraph has used - but who on EARTH thinks using the index finger for fingertip testing is a good idea?  Owww! - which is precisely why for at least 50 years (we were all boiling up pee before that anyway) we've always been told NOT to use that finger!


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## SB2015

trophywench said:


> Hi Gwen
> 
> Just read this article quoting DUK etc.
> 
> Observe the illustrations - and yes I know they're most likely 'stock' photos the Telegraph has used - but who on EARTH thinks using the index finger for fingertip testing is a good idea?  Owww! - which is precisely why for at least 50 years (we were all boiling up pee before that anyway) we've always been told NOT to use that finger!


Hi Jenny
Should there be a link to an article or is it a reference to an earlier one.

Interestingly I have never been told not to use my index finger, or I had forgotten (which is just as likely)
I now have very hard ends to all my fingers, pitted with lots of holes, and none of them seem to hurt much now.
On the rare occasions it does hurt that prompts me to change to the next lancet.  The accuchek one is so fine and seems to last for ages.

If only I had listened/been told about which fingers to use.  I know not to use the pads but even then ....


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## Madeline

I only got told not to use my thumb, not why, and nobody mentioned fingers or where to do it. The nice leaflet said to use the side.


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## trophywench

A very simple reason why it's not a good idea to use the index finger - and it makes perfect sense what's more - we all have more nerve endings in the pad of our index finger hence it ruddy well hurts more than any of the others!

I prescribe the purchase of a pumice stone to be used little and often on both pads and sides as required, followed by  hand cream a couple of times a day and always before bed.  If you don't get rid of hard skin/scar tissue the handcream will do no good on it's own.

If it's really bad sorry! - use something more abrasive eg a scant amount of something like Ajax liquid on the pumice stone but only every couple of days at the most in between the soap and pumice.


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## Madeline

Ok so index is next to little?


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## trophywench

Oops, sorry! 

https://www.msn.com/en-gb/health/me...all-20pc-in-a-year/ar-BBVt4xO?ocid=spartanntp


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## Madeline

Or not 

So Peter Pointer. He’s def not my most delicate finger, that would be the one next to the little finger. Left index and middle are my two go to fingers.


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## TheClockworkDodo

I use all my fingers and thumbs, in rotation - that way I have 20 places to stick my lancet.  I often do 10 tests in a day, sometimes more, so having fewer would not work for me at all.  My index finger is my toughest finger, and doesn't hurt at all (I sometimes have to turn the dial up to 3 to do that one, I use it set to 2 for the others).

I understood that the reason not to use the index finger for testing was so that, in a worst case scenario, it was still sensitive enough to read braille.  But I don't think that's relevant if you're sensibly using the sides of your fingers anyway, and not the pads.


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## Lanny

My thumbs & index fingers are the least sensitive & hurt the least although I have to set my softclix to 1.5 when I use 0.5, the lowest setting, for my other fingers. My ring fingers are the most sensitive & hurt the most: it’s why in the beauty industry you’re suppose to use the ring fingers to gently pat in eye cream around your eyes; the most sensitive finger capable of giving the least pressure & gentlest touch on the delicate skin around the eyes!

I too use both sides for 20 testing points: which I need at times of insulin dosage changes; going through insulin reductions this past week & testing loads to head off hypos!


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## SB2015

Well I now know 
- which finger to use to apply eye cream
- how to care for my fingers with a pumice stone
- that I am not the only one whose insulin changes are wobbling with the weather
...

Who would have thought our forum could be so wide in its info!!


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## Deleted member 22730

trophywench said:


> Hi Gwen
> 
> Just read this article quoting DUK etc.
> 
> Observe the illustrations - and yes I know they're most likely 'stock' photos the Telegraph has used - but who on EARTH thinks using the index finger for fingertip testing is a good idea?  Owww! - which is precisely why for at least 50 years (we were all boiling up pee before that anyway) we've always been told NOT to use that finger!


Hi Jenny.  Thanks for bringing this to my attention.  I will certainly pass this on to the content team, as I'm sure they will be keen to make sure any advice or information given in articles that quotes us is in line with our policy and the NHS's policy.  Thanks very much!


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## Ditto

I can only use the little finger on my left hand and struggle to get blood out of that one too. I'm just not a bleeder!


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## Northerner

Ditto said:


> I can only use the little finger on my left hand and struggle to get blood out of that one too. I'm just not a bleeder!


I also only use my little fingers - usually the right hand as I'm left-handed. Occasionally, I will use the fingers next to the little ones, but never ring, index or thumb


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