Testing Strips & Meters For Type 2s...

[Ralph-YK]

Ugh. I'm going to have to stop trying to post & edit using this tablet Not really good for it.

 

[Ralph-YK]

Well after 3 years on here you must be an expert now Ralph!

Closer to 2. And I've still no idea if I can have porridge

 

[Mark Parrott]

Closer to 2. And I've still no idea if I can have porridge

I've bought some overnight oats. Will be trying them tomorrow for the first time.

 

[mikeyB]

Um, topic drift?

 

[Bubbsie]

I've bought some overnight oats. Will be trying them tomorrow for the first time.

Might try them Mark...let me know how you get on with them..that's.the beauty of testing...results after two hours...might just experiment with them myself.

 

[Diabetes UK]

What a spectacular thread - its great to see how much this thread has developed over the weekend - I must say it has taken me some time to get up to speed on this... There were rather a few points that have sought input from Diabetes UK so I shall attempt to address the main queries that came up.

Firstly I would like to offer my apologies for any misunderstanding regarding comments about the thread coming to a natural end - certainly did not wish to hault discussion on such a passionate debate - I had the previous posts as not wishing to continue the discussion, a desire I was wishing to respect. There's so much energy here this is a momentum that should be harnessed and run with.

I can't understand why DUK doesn't organise a lobbying campaign on this issue. It would work like this...

MPs want to keep their jobs so like to quell any unrest in their own constituencies. DUK could ask all members to write to their MP raising this issue and asking what they plan to do about it. At the same time they could write a 'letter to the editor' of their local paper whenever a diabetes related story is reported...or tag it on to a story about NHS funding/other cuts etc. This would raise the issue in a more public arena and is likely to provoke a flurry of responses. Newspapers like this sort of activity because is has local interest and fills column inches. MPs hate it because it represents unrest in their constituency and makes them look inept. Come on DUK...this forum is full of articulate, intelligent individuals who are willing and able to 'have a go'. Harness that resource and let's tackle this issue head on.

Yes MBT - Lobbying, writing to MPs and involving newspapers are all great suggestions and something we are encouraging with our e-activist Online Action form . It's also precisely what our Diabetes Voices Team support with - campaigning for change. There was mention of involving the person in charge of campaigns? I will highlight this thread to a number of teams - but the Diabetes Voices team are dedicated to supporting you with raising issues locally and nationally, so I would encourage getting in touch with them for some guideance. These are some of the successes from individuals who have started their own campaigns. All these people have found an issue and worked with us to drive change:

https://www.diabetes.org.uk/Get_involved/Campaigning/our-campaigners

There is a lot of debate in this thread but as has been mentioned many times, we are all fighting for the same cause here- so lets channel all this energy to where the change can happen - we are fighting these by putting pressure on decision makers at each level, that means working with individuals, working locally, regionally and nationally.

 

[Diabetes UK]

Access to test strips (Testing Times) is one of our top priority campaigns, alongside another issue that has been raised in this thread - getting the right education (Taking Control)
Campaigns - https://www.diabetes.org.uk/get_involved/campaigning

Some questions came up about how Diabetes UK approach tackling these key issues?
We tackle issues from all directions, working to drive change at each level.

Individually
Our advocacy team offer support to individuals to challenge decisions by their healthcare team - by giving people the tools to self-advocate, this means we can have the widest possible reach to offer support. We are know that wider change can be slow. We can't expect individuals to wait for these changes that could take a long time. Therefore, we have to offer support for people to challenge decision and find immediate solutions, so that they can access the strips they need right now.

Locally/Regionally
Regional Influencing Managers & Clinical Champions, who are also health care professionals, are fighting the corner for diabetes with local CCGS's, NHS healthboards, and local decision makers to bring diabetes to the top of the priority list for local areas. We now have 65 Clinical Champions across the UK and are expanding the project:
https://www.diabetes.org.uk/professionals/resources/clinical-champions-and-networks

They will be working in their local area to drive change, with well-informed understanding of the key issues in their particular area.

Nationally
The Policy Team have been working hard to fight on a number of campaigns with a some recent successes. A key success was securing an extra £40 million national funding for Diabetes care in England, after it was announced as a national priority. You can see some of the subjects that we have raised in parliament here.
As was mentioned previously we work with a number of MPs including Keith Vas who has done some great work in supporting Diabetes. Also the APPG: All Parlimentary Group continue to rasie diabetes as a national priority:
https://www.diabetes.org.uk/get_involved/campaigning/our-work-in-parliament/appg-2016-report-launch

Getting Diabetes firmly on the political agenda was our key focus during the General Election with our Diabetes Manifesto. We worked with MPs, Parliamentary groups and people living with diabetes to make Diabetes a national priority - see the Diabetes Manifesto: https://www.diabetes.org.uk/get_involved/campaigning/our-work-in-parliament/2017-general-election

We recognise that change is needed. And we now want to lead this change. Listening to the people affected by diabetes is at the heart of this. The Future of Diabetes is a project that is going to help us work in a new way, understanding what our priorities are by listening to you. By raising concerns here - key threads can be fed back to the teams and will all help us to push for the changes that you want to see happen: https://www.diabetes.org.uk/Get_involved/Campaigning/The-future-of-diabetes

Hope this helps you to get a wider of understanding of we are approaching key issues and the ongoing work that is being done across the country to push through changes in Diabetes care.

 

[Marsbartoastie]

Thank you Hannah for the wealth of information. Reading through the various links has kept me gainfully occupied and out of trouble for quite some time.😉

I've just signed up for Diabetes Voices which would appear to be where my input would do most good. I hope that the co-ordinator/s will give me plenty of opportunity to participate...especially, but not exclusively, around the issues of BG testing and education.

This thread has provoked excellent debate and raised the profile of the topic under discussion. I trust that the views expressed by members of this forum have been clearly heard back at DUK Towers. 🙂

NB: I would also have registered to be an e-activist, but the link doesn't seem to be working. I will try again tomorrow.

 

[Vince_UK]

This thread has provoked excellent debate and raised the profile of the topic under discussion. I trust that the views expressed by members of this forum have been clearly heard back at DUK Towers. 🙂

If it hasn't MBT, some serious questions need to be asked by the members of DUK

 

[Bubbsie]

It's also precisely what our Diabetes Voices Team support with - campaigning for change

I've had involvement with the Diabetes Voices Team Hannah...it wasn't what I would describe as a positive...or productive experience...as highlighted below...so not for me at the moment...would have to give that some serious thought.

they wanted to summarise my 'battle' with the CCG (there had been no final decision on that yet)...again I agreed provisionally...asking for final approval before anything was published...the summary arrived with a request for a photograph for the web site...what came back was not representative of my circumstances...did not accurately portray my 'fight' with the system to get what I needed...I advised DUK I was not happy with the summary...would not be prepared to supply a photograph (for obvious reasons I have no wish to be the target of trolls or tabloid journalism)...or my location...I was invited to edit what had been written...but...not to rewrite it...I would have been happy to consult DUK on this...agree a suitable compromise...condense my experience...that was not offered...I had to decline the invitation

 

[Vince_UK]

http://www.chroniclelive.co.uk/news/north-east-news/diabetic-man-hits-out-over-13795798
Interesting reading.. I have mixed thoughts on this to be honest.
I looked at the libre early on in my Daibetic journy and found the ongoing cost of the senors, £57 each with 2 week lifespan, totally unjustifiable.
The cost of the Libre unit itself was acceptable but the ongoing costs caught my breath.

 

[Vince_UK]

What a spectacular thread - its great to see how much this thread has developed over the weekend - I must say it has taken me some time to get up to speed on this... There were rather a few points that have sought input from Diabetes UK so I shall attempt to address the main queries that came up.

Firstly I would like to offer my apologies for any misunderstanding regarding comments about the thread coming to a natural end - certainly did not wish to hault discussion on such a passionate debate - I had the previous posts as not wishing to continue the discussion, a desire I was wishing to respect. There's so much energy here this is a momentum that should be harnessed and run with.



Yes MBT - Lobbying, writing to MPs and involving newspapers are all great suggestions and something we are encouraging with our e-activist Online Action form . It's also precisely what our Diabetes Voices Team support with - campaigning for change. There was mention of involving the person in charge of campaigns? I will highlight this thread to a number of teams - but the Diabetes Voices team are dedicated to supporting you with raising issues locally and nationally, so I would encourage getting in touch with them for some guideance. These are some of the successes from individuals who have started their own campaigns. All these people have found an issue and worked with us to drive change:

https://www.diabetes.org.uk/Get_involved/Campaigning/our-campaigners

There is a lot of debate in this thread but as has been mentioned many times, we are all fighting for the same cause here- so lets channel all this energy to where the change can happen - we are fighting these by putting pressure on decision makers at each level, that means working with individuals, working locally, regionally and nationally.

There's a good start e-activist unable to access. see screen shot
Submitted to join Voices Team

 

[everydayupsanddowns]

There's a good start e-activist unable to access. see screen shot
Submitted to join Voices Team

Can’t really see the screenshot on my phone, but if the DUK website looks to be having gremlins you could try to message/contact @Stefan Diabetes UK

I’ve always had a positive experience with Diabetes Voices, and have been supported by them to raise the profile of various issues (eg foot care). They offer training and support events for volunteers too.

I’ve always been happy with the way interviews/quotes have been used for the things I have offered (eg for the recent Freestyle Libre campaign which you mention Vince).

 

[Vince_UK]

Can’t really see the screenshot on my phone, but if the DUK website looks to be having gremlins you could try to message/contact @Stefan Diabetes UK

I’ve always had a positive experience with Diabetes Voices, and have been supported by them to raise the profile of various issues (eg foot care). They offer training and support events for volunteers too.

I’ve always been happy with the way interviews/quotes have been used for the things I have offered (eg for the recent Freestyle Libre campaign which you mention Vince).

Thanks for the comments Mike

 

[Bubbsie]

Can’t really see the screenshot on my phone, but if the DUK website looks to be having gremlins you could try to message/contact @Stefan Diabetes UK

I’ve always had a positive experience with Diabetes Voices, and have been supported by them to raise the profile of various issues (eg foot care). They offer training and support events for volunteers too.

I’ve always been happy with the way interviews/quotes have been used for the things I have offered (eg for the recent Freestyle Libre campaign which you mention Vince).

You were fortunate then Mike...perhaps I should do a screen shot of the information I sent them when they asked me to feature on the web site re: the testing strips campaign...and the way it was summarised by the team...the contrast is astounding.

 

[everydayupsanddowns]

You were fortunate then Mike...perhaps I should do a screen shot of the information I sent them when they asked me to feature on the web site re: the testing strips campaign...and the way it was summarised by the team...the contrast is astounding.

It would be really interesting to see that if you are happy to share it.

 

[Bubbsie]

It would be really interesting to see that if you are happy to share it.

I am not absolutely certain that would be a such good thing for the voices team Mike...I would say not their best work...however...I suppose we all have our off days...be happy to discuss/share my views with the voices team directly.

 

[Stefan Diabetes UK]

Sorry about the problems with the webpage everyone. We're doing a bit of maintenance on the tool this week and something went wrong I'm afraid. It's all in working order now, though it will be looking better by the end of the week.

So @Vince_UK, or anyone else, if you want challenge restrictions you've faced, please feel free to use the tool. It'll identify the local body you need to contact and provide a template letter you can edit before sending. You can access the tool here: https://goo.gl/zKgq79

@Bubbsie We're sorry you weren't happy with our summary of your experience, and that in summarising we got the details of your experience wrong. We understand it's important to get these things right, and completely appreciate the reasons you chose not to go ahead with sharing your story in that way earlier this year. We'd be happy to talk about this, or anything else you'd be interested in campaigning on, in more detail. You can reach us on diabetesvoices@diabetes.org.uk, or I'd be happy to chat on the phone.

 

[Dave Wyldes]

My question is how do you know when your BG is high or not if you cannot self monitor. I know when it is low but not when it is high. Having a review each year is not that helpful. A lot of damage can occur between reviews

 

[Ralph-YK]

My question is how do you know when your BG is high or not if you cannot self monitor.
I know when it is low but not when it is high. Having a review each year is not that helpful. A lot of damage can occur between reviews

We're not supposed to know. I don't. Don't know when it's low either.
We're not supposed to be involved with our diabetes at all. That's why self testing is dismissed out of hand.