Northerner
Admin (Retired)
- Relationship to Diabetes
- Type 1
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Ask Diabetes UK!
- Thread starter Northerner
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SB2015
Well-Known Member
- Relationship to Diabetes
- Type 1
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.
Ooh congratulations! We'll keep you updated when everything has been finalised!
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
Well-Known Member
- Relationship to Diabetes
- Type 2
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
Well-Known Member
- Relationship to Diabetes
- Type 1
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.
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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
Well-Known Member
- Relationship to Diabetes
- Type 2
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.
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
Well-Known Member
- Relationship to Diabetes
- Type 2
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
Admin (Retired)
- Relationship to Diabetes
- Type 1
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
Well-Known Member
- Relationship to Diabetes
- Type 2
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
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
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
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".
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
Well-Known Member
- Relationship to Diabetes
- Type 1
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
"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.
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.
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.
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