Campaigning on test strips

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Stefan Diabetes UK

Stefan Diabetes UK

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Hi,

You might remember last year I asked you all to fill in a survey on accessing blood glucose test strips. (Many thanks to the very many people on this forum who did it by the way, was a big help!)

Because of the results of that survey, Diabetes UK are now campaigning for fairer access to blood glucose strips. To find out more and tell us what you'd like to do in the campaign, please have a look at our new campaign page.

(https://goo.gl/Obgjma)

Disappointingly, 1 in 4 people who responded to our survey said they were not getting enough blood glucose test strips to manage their diabetes effectively. A worrying number had recently saw their prescriptions reduced too.

We know restricted access to test strips is a problem that affects lots of people living with all types of diabetes, so we want to make sure everyone has a chance to get involved.

Whether it's sharing your own experience with the media, sharing things on social media, passing on materials to your GP surgery or providing comments, there's lots of ways to back this campaign, so please let us if you're interested.

Please do give me a shout too if you've any thoughts or questions. Thanks!
 
Hi Stefan,
I was'nt around on the forum for one reason or another so missed the said survey you mentioned you carried out last year.But I did click on the link you gave and filled in details there.
I do know alot of us on here will support in any small way we can.

Good luck
 
Thanks Steff, that's great - yup there's lots of small things everyone can do make a big difference. Even people sharing their own experience of getting test strips has been really helpful in understanding the problems people face.
 
had problems getting glucose test strips, had even more problems getting ketone test strips (none for the last fortnight)
 
For a T1 to have trouble getting test strips is criminal and I for one would make an official complaint to the surgery.
I have had my meters replaced by the surgery standard model (TrueYou - test strips £20+ for 50 to me or £10 to the NHS) without notification and quantity reduced to 25/month. Complained to my GP who increased it to 50/month. Then I find my prescription has been changed to 0 without notifying me. My previous GP has retired and we now have 2 female GPs and 1 locum Male. The reduction resulted in me having a discussion with the GP about the situation. Unfortunately she has the common attitude of it's a waste of time me testing, the annual HBA1c is adequate, but she did agree to give me 50/month so I can adjust my evening meal according to the one a day test.
In the meantime my wife (also T2) has had her test strips removed totally in what is obviously a surgery policy.
 
had trouble getting needles too!
 
Stefan Diabetes UK said:
Thanks Steff, that's great - yup there's lots of small things everyone can do make a big difference. Even people sharing their own experience of getting test strips has been really helpful in understanding the problems people face.
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I had my meter taken away last month and replaced by one which has cheaper test strips. I was told this was now the policy in Somerset. I hate my new one and trying to get my old one back which I Loved. I was told I should be testing less and soon my test strips would be limited. Not sure if my experience is helpful for your research?
 
What shocking stories! This is really dangerous - and very short sighted: what is the cost of a trip to hospital in an ambulance, and an overnight stay?!
 
By the way I read today that Theresa May is a Type 1 Diabetic, so busy as she is, this might be a good moment to apply pressure for diabetics to be treated with respect.

She must know first hand how important it is to keep testing! I believe this is esp important for those of us who live on our own - I was only diagnosed a month ago but I have a horror of having a hypo or hyper when home alone (with the poor dog)
 
about a month back I had a discussion with my docs receptionist, she seemed to think i'd be ok without needles for a few days (had insulin, just no way to inject it). I asked what I should do in the meantime when I got ill, just call an ambulance and go back to a & e? her helpful advice was "oh, don't be like that".....
 
Well, my experience is from the States....

Immediately upon DX (FBG of 14.0) I was given a prescription for:
  • Metformin
  • Test Meter
  • Test Strips (for 2 a day though with instructions to test FBG & 2 hours after my main meal) I'm sure if I asked I could get more
  • Lancets
No questions asked, & several of my friends who just have high BG were also given prescriptions for meters (not necessarily form the same medical practice as I)
The insurance co-pay is $0 for test strips

I think they are somewhat more enlightened over her, I don't think that it's because of the Health Insurance model but we are encouraged to take control of our disease. Another thing I also get while at my periodic checkups is an order for bloodwork which I use just prior to my next checkup.
 
I've never had test strips from either GP practice I've been with.
 
There seems to be no consistent policy on type 2's and it's dependent on the attitude of your GP. Mine is excellent and readily provides me with test strips even though I'm not on medication but I know I'd have a hassle with certain other GP's. It could be however that my other serious conditions make me eligible because they are keen to keep me out of hospital.
 
sean penguin said:
about a month back I had a discussion with my docs receptionist, she seemed to think i'd be ok without needles for a few days (had insulin, just no way to inject it). I asked what I should do in the meantime when I got ill, just call an ambulance and go back to a & e? her helpful advice was "oh, don't be like that".....
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Sean - the trick is not to get annoyed and simply say, 'Don't be so utterly ridiculous. Now please put me through to your Manager, there's a dear'

LOL
 
they seem so disorganised at the surgery that i'd be surprised if they had a manager hehe

the doc himself is fine (if you can get to see him), seems to be the reception office that keeps messing up things.
 
New-journey said:
I had my meter taken away last month and replaced by one which has cheaper test strips. I was told this was now the policy in Somerset. I hate my new one and trying to get my old one back which I Loved. I was told I should be testing less and soon my test strips would be limited. Not sure if my experience is helpful for your research?
Click to expand...

Hi @New-journey I think it's definitely something we'd be interested in hearing - could you enter it in our online form if you haven't already? Be especially interesting to hear roughly how many strips you use at the moment and how much they want to limit you to.
 
Thanks to everyone who replied, especially those who have faced this problem themselves. @Ralph-YK @sean penguin @Vicsetter if you haven't already would be great if you can enter your experience in our form.

Some very worrying stories have already come out, and yeah as someone said definitely seems to be a lack of consistency across the country
 
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