Ask Diabetes UK!

[Diabetes UK]

My point is simply that the D-UK web site, in places, seems to adhere to some very out of date ideas regarding fat & cholesterol plus there is some fairly unclear advice on "free sugars".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. 🙂

 

[Diabetes UK]

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.

 

[Diabeticliberty]

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]

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]

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]

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]

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]

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]

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. 🙄

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

 

[SB2015]

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]

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]

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]

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]

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! 🙂