Campaigning on test strips

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Stefan Diabetes UK said:
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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If you read this forum for a few months this would not suprise you anything Diabetes related is very inconsistent.
 
I'm on insulin and My gp thought 50 strips a month was enough 😱
 
Ljc said:
I'm on insulin and My gp thought 50 strips a month was enough 😱
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Knowing you Lin - I daresay he very soon discovered the error of his ways ......

@Stefan Diabetes UK - the main trouble is - it IS inconsistent and nobody on earth has 'overall' control. So even if we decide it must be the CCGs and have a go at all of them and get them to change - there will still be odd surgeries either here or there - who choose to ignore it - or employ a Locum (shedloads of them) who isn't aware.

Plus - still SHEDLOADS of individual GPs who think eg me or any person who's been on insulin for a while - don't need to test before every single meal - let alone when we jump in the car, or decide to go for a jog etc. These old fashioned ones - some of em are University Teaching Profs. (And then there's also 'Farmer et Al' - saying that testing makes T2s depressed so don't let them. When if you actually read the method of their research - OF COURSE it made em depressed!! - it was specifically DESIGNED to do that.)
 
trophywench said:
Knowing you Lin - I daresay he very soon discovered the error of his ways ......
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Yup :D

@Stefan Diabetes UK - the main trouble is - it IS inconsistent and nobody on earth has 'overall' control. So even if we decide it must be the CCGs and have a go at all of them and get them to change - there will still be odd surgeries either here or there - who choose to ignore it - or employ a Locum (shedloads of them) who isn't aware.

Plus - still SHEDLOADS of individual GPs who think eg me or any person who's been on insulin for a while - don't need to test before every single meal - let alone when we jump in the car, or decide to go for a jog etc. These old fashioned ones - some of em are University Teaching Profs. (And then there's also 'Farmer et Al' - saying that testing makes T2s depressed so don't let them. When if you actually read the method of their research - OF COURSE it made em depressed!! - it was specifically DESIGNED to do that.)
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I fully agree with you there.
 
Stefan Diabetes UK said:
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.
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Ok wil do that now. I was told to never test after my meal, she said 3 or 4 times a day was enough. I clearly remember a year ago at diagnose she said test after each meal. She actually made a joke about how I must be hurting my fingers with all my testing. On a good day without driving I test 7 times, can be ten times if I have a low or driving.
 
I'm glad I cant drive, my fingers wouldn't stand for it!
 
Agree with @trophywench & @Ljc there defintely needs to be change on all levels to make access to test strips fairer- nationally, at CCG level and in individual GP sugeries. That's what we'll be hoping to achieve in the campaign kicking off soon, and why we're keen to get as many people involved as possible.

Thanks to @sean penguin & @New-journey for filling in the form too, we'll keep you posted on the next steps.

By the way if anyone needs support in getting access to test strips there is a Diabetes UK Advocacy Pack you might find helpful.
 
I think the thrust of any action should be based on this statement in the Nice guidelines ng28:
In adults for whom self-monitoring is appropriate, there is limited evidence to guide clinical practice in prescribing self‑monitoring regimens, in terms of frequency of testing and optimal blood glucose targets. Given the inconvenience and expense of self‑monitoring, robust evidence from randomised controlled trials is needed to guide the optimal use of this intervention.​
for T2s who are not on any kind of hypo-inducing drugs then it is a battle with no evidenced based studies to prove the case for prescribing test strips.
It appears that you have to have a battle with your GP at regular intervals based on your HBA1C result. If you are lucky you might get referred to a dietician who isn't stuck in the past of low fat/high carb, or you get beaten up for not exercising enough. The magic HBA1c is the only measure that is required. Its a bit like giving you a car without a speedo or fuel gauge.

The anticipation of the upcoming struggle with the GP shouldn't happen

At the same time GPs seem to have their own interpretation of the path taken in prescribing diabetes drugs. Metformin first (or maybe not), followed by Sulfonylureas or maybe straight on to insulin (basal ,mixed, human etc etc)
 
I have had no problem getting strips from my GP so far. In my first 3 months I had 6 lots of strips, I know it was 6 as that was the amount on my repeat before I needed approval for another repeat. I reduced my hb1ac from 117 to 42 in three months so DN wrote on my notes testing and lifestyle changes managing condition - I am on met 500mg twice a day. I now have another 6 on my repeat.

I find it shocking that Type 1 are limited in access to strips etc. and isn't it cheaper to allow type 2 to manage through testing than increasing amounts of medication.

I would be happy if my surgery changed to the meter recommended on this site for self funding testers if it meant I continued access to my strips.
 
It will not allow me to complete your survey as I don't have a UK postcode. I wanted to share the fact that here in Spain I have been given a meter and ample strips which have helped me enormously to adjust my diet.
 
Vicsetter said:
I think the thrust of any action should be based on this statement in the Nice guidelines ng28:
In adults for whom self-monitoring is appropriate, there is limited evidence to guide clinical practice in prescribing self‑monitoring regimens, in terms of frequency of testing and optimal blood glucose targets. Given the inconvenience and expense of self‑monitoring, robust evidence from randomised controlled trials is needed to guide the optimal use of this intervention.​
for T2s who are not on any kind of hypo-inducing drugs then it is a battle with no evidenced based studies to prove the case for prescribing test strips.
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Ok, if there aren't evidenced studies confirming or denying this, why no such study is made? Make a control group without strips and a test group that uses the strips, and a test group using a CGM.
Show the results.
Of course people using the BG monitoring must be trained on how to use it.
 
Jeandp said:
It will not allow me to complete your survey as I don't have a UK postcode. I wanted to share the fact that here in Spain I have been given a meter and ample strips which have helped me enormously to adjust my diet.
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Hi @Jeandp , good point - I have now changed the form so post code isn't a mandatory field, so feel free to complete it 🙂 Or you can send any thoughts directly to diabetesvoices@diabetes.org.uk
 
With respect, surely accepting answers from outside UK will make analysis inaccurate?
 
Copepod said:
With respect, surely accepting answers from outside UK will make analysis inaccurate?
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I haven't done nothing because of this.
I have the same problem with SSN in Italy, but I supposed that this is a NHS oriented thing.
 
Jeandp said:
It is still not accepting me. It asks me to complete all the fields with an asterix, even though the postcode does not have an asterix.
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Hmm, not sure what the problem is there as it's working for me as I test it. For now probably best to send any details via email to diabetesvoices@diabetes.org.uk

It will be a UK-only campaign, but so long as people mention they are not in the UK in the other address fields it's easy enough for us to filter out the non-UK responses. Also the data we use for the campaign will come from the survey we did last year; with this what we're mainly looking for is people's comments on their experience of test strip restrictions. So we're happy to hear from anyone interested in sharing that experience.
 
MikeTurin said:
Ok, if there aren't evidenced studies confirming or denying this, why no such study is made? Make a control group without strips and a test group that uses the strips, and a test group using a CGM.
Show the results.
Of course people using the BG monitoring must be trained on how to use it.
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Are you offering to fund it Mike? LOL
 
Vicsetter said:
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.
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I had this too. meter changed with no negotiation. I test about 5 times a day and the new meter doesn't allow for testing ketones.
 
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