‘Have you been told not to test your blood sugars?’: update/result

[desidiabulum]

Thanks to everyone who contributed to the thread.
I wrote to Diabetes UK, noting from their 2013 report on access to test-strips (thanks to Phoenix for the link) the extraordinary range of misleading responses given by HCPs in telling people why test strips cannot be provided, and noting especially those cases where diabetics are told that testing is unnecessary or even positively harmful. I remarked that this meant that not only are diabetics not receiving test strips, but they are being positively dissuaded from buying their own and using them to monitor their condition. Using examples from this thread, I commented that the reasons given (stress, pain from use of lancets or risk of infection, ‘testing does not work’, etc) ranged from the misleading to the outrageously false. I suggested that, even if the financial problem is intractable, it might be possible for DUK to promote the drawing up of a code of practice for HCP responses to T2 diabetic requests for testing strips, so that patients are not actively dissuaded from testing with false information.
They agreed to bring the topic up for discussion by their policy team, and I have now been told that, while the Healthcare Professional Engagement team felt they have insufficient capacity for this to be a significant piece of work, they do see the importance of the issue. They may therefore run this as a story in one of their newsletters for healthcare professionals this year.
It’s a start, then.

 

[catherinecherub]

Thank you for the time and effort you have put in.

 

[Brunneria]

Thank you!

 

[CollieBoy]

thanks for the time & effort you have put in

 

[Fallgal]

Thank you for your efforts! You brought up a lot of excellent points in your letter to them.

I don't want to open a can of worms, but what if strips were provided only to those with true need? I can afford to buy my own (with a little budgeting), and of course would love to get them on prescription for free. However, I would pass on this if it meant that someone else who truly struggles to afford them could get them on prescription. Providing strips to those who are under a certain income would be a start, yes?

 

[desidiabulum]

Thank you for your efforts! You brought up a lot of excellent points in your letter to them.

I don't want to open a can of worms, but what if strips were provided only to those with true need? I can afford to buy my own (with a little budgeting), and of course would love to get them on prescription for free. However, I would pass on this if it meant that someone else who truly struggles to afford them could get them on prescription. Providing strips to those who are under a certain income would be a start, yes?

I would define 'true need' as everyone in the first 2 months after diagnosis, who need to understand how to regulate their BGs and how to use test strips to do this. After that, for many people regular testing is less vital, and means-testing would be fair (except that it usually costs more to administer than the savings). The key to preventing T2 diabetic complications is to make people aware of how they can control their sugars, and to have a feeling of responsibility (even pride) for doing so, and an initial testing regime after diagnosis under careful supervision and education is the only obvious way to do this that I can see.

 

[phil1966]

Thank you for your efforts! You brought up a lot of excellent points in your letter to them.

I don't want to open a can of worms, but what if strips were provided only to those with true need? I can afford to buy my own (with a little budgeting), and of course would love to get them on prescription for free. However, I would pass on this if it meant that someone else who truly struggles to afford them could get them on prescription. Providing strips to those who are under a certain income would be a start, yes?

I think that would definitely be a start, but I wish the NHS would take a longer term view of things - if testing can help people keep their diabetes under tight control, it may well save money for the NHS in the long run as they may avoid or delay many of the expensive complications.

 

[Fallgal]

Oh yes, I certainly agree that it could very well save money for the NHS. Just thinking out loud what could be a 'start'. I agree too that newly diagnosed would greatly benefit as well.

 

[CollieBoy]

I think that would definitely be a start, but I wish the NHS would take a longer term view of things - if testing can help people keep their diabetes under tight control, it may well save money for the NHS in the long run as they may avoid or delay many of the expensive complications.

@phil1966
This assumes that politicians can see beyond their own "Time sphere of influence"
i.e. once they are no longer in command it is someone else's problem.
I am lucky, I can invest for my old age,
so I invest in strips to allow me to enjoy it!
Others may not be so lucky.

 

[ally1]

thank you

 

[Avocado Sevenfold]

If the NHS does not have funds for strips, then I can't argue with that. What does pee me off though is all the ****-and-bull stories that people on here have been fed about why they shouldn't test. So thank you very much @desidiabulum for raising this issue.

 

[graj0]

Thanks to everyone who contributed to the thread.
I wrote to Diabetes UK, noting from their 2013 report on access to test-strips (thanks to Phoenix for the link) the extraordinary range of misleading responses given by HCPs in telling people why test strips cannot be provided, and noting especially those cases where diabetics are told that testing is unnecessary or even positively harmful. I remarked that this meant that not only are diabetics not receiving test strips, but they are being positively dissuaded from buying their own and using them to monitor their condition.

Somebody listening is always a good start, thanks for doing us proud, Thanks for getting DUK to sit up a bit.

 

[Emmotha]

Well I'm type 1 and rely on my strips daily and cannot even get enough so I supplement my own.

If you're on insulin T1 or T2 they shouldn't be restricted

 

[beardie]

Well I'm type 1 and rely on my strips daily and cannot even get enough so I supplement my own.

If you're on insulin T1 or T2 they shouldn't be restricted

Do you live in the UK Emmotha?

 

[Kat100]

Good work , Thank you

 

[Emmotha]

Do you live in the UK Emmotha?

Yep. It's not all the time, but they have sometimes refused my prescriptions and told me to use only 6 per day

 

[beardie]

Yep. It's not all the time, but they have sometimes refused my prescriptions and told me to use only 6 per day

That it just silly. Make a complaint.

 

[tim2000s]

It's quite interesting though. When I was first diagnosed and put on a twice daily injection of Insulatard with specific meal carb sizes, we were expected to test once per day, cycling through before breakfast, after breakfast, before lunch, after lunch, etc each on a different day, so that in a week you sampled nearly all possibilities. It made a lovely pattern in the logbook.

Even on moving to MDI I wasn't advised to test as regularly as I learned to do to gain decent control (in fact I'd say my MDI move was very unsupported and a lot of it was learn by trial and error).

I suspect the two factors that affect the issue with strips for T1s are old-fashioned attitudes and the Internet that has allowed those on MDI to find out what they probably need to know rather than what they may have been told by the diabetes team where they were treated.

 

[chris lowe]

Saw diabetic nurse yesterday and when I said I test each morning she said it's not really worth it, just if I feel unwell. The words shutting stable door, horse & bolted sprang to mind!

 

[HSSS]

Thanks to everyone who contributed to the thread.
I wrote to Diabetes UK, noting from their 2013 report on access to test-strips (thanks to Phoenix for the link) the extraordinary range of misleading responses given by HCPs in telling people why test strips cannot be provided, and noting especially those cases where diabetics are told that testing is unnecessary or even positively harmful. I remarked that this meant that not only are diabetics not receiving test strips, but they are being positively dissuaded from buying their own and using them to monitor their condition. Using examples from this thread, I commented that the reasons given (stress, pain from use of lancets or risk of infection, ‘testing does not work’, etc) ranged from the misleading to the outrageously false. I suggested that, even if the financial problem is intractable, it might be possible for DUK to promote the drawing up of a code of practice for HCP responses to T2 diabetic requests for testing strips, so that patients are not actively dissuaded from testing with false information.
They agreed to bring the topic up for discussion by their policy team, and I have now been told that, while the Healthcare Professional Engagement team felt they have insufficient capacity for this to be a significant piece of work, they do see the importance of the issue. They may therefore run this as a story in one of their newsletters for healthcare professionals this year.
It’s a start, then.

Almost 8 yrs on and no change!