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Just been told I need to 'test less'

dylt1

dylt1

Active Member
Messages
35
Type of diabetes
Type 1
Treatment type
Insulin
Hello, a bit of background. 23 years old diagnosed just under 2 months ago with the usual symptoms HbA1c of 118. I'm a very active guy, I play football 2 times a week and go to the gym 4 times a week. I've got my blood sugars to a good level now, always between 4-8 and I put this down to how regularly I check my blood sugars and keeping active. I'm on lantus and novorapid and I used to use the freestyle optium neo blood glucose monitor.

Three days ago in the post I received the freestyle insulinx blood glucose monitor which I find really helps with insulin calculation and I've gained more confidence in getting my blood glucose levels correct. The kit only came with 30 test strips and I was just about to run out today when I went to the doctor to change my prescription to these new test strips. They come in boxes of 50 so I asked if I could have some more as 50 wouldn't last me a week, I test before food and 2 hours after food and I eat 4 times a day, I also drive. I test slightly more on days where I have exercise as I like to get to the correct glucose levels to avoid a hypo. When asked how much I test I said around 10 times a day they where in shock by what they heard, 'Test less', 'you shouldn't be testing as much' they said. To which I replied with specific reasons why I test so much (drive, food, exercise, and only diagnosed 2 months ago). Once the doctor heard that I drive he said 'OK you can have 100 on your prescription' which is slightly better but still means I will have to pop in and out of the doctors every 2 weeks (ish).

Has anyone had any experience of this? Why cap someone on how many test strips they can have in the first few months of diagnosis, I don't know what my body does all of the time do I? I need test strips to understand how my body is affected by different things.

What's the difference between having 500 on my prescription - meaning I'd have to go to the doctor/pharmacy once every month and a half ish or having 100 and having to come in every time I run out (it's a pain in the butt because I have to go to work late if I go to the doctor in the morning)? I also told the doctor 'I have diabetes for life, I'm going to be using them' to which he replied 'I know you will use them it's just a case of if it's necessary'

I want to live as long as I can and by keeping on top of my blood sugars is the way to do it. Restricting how many I can have on my prescription is just a hassle. Not being able to have a CGM on the NHS is bad enough, but having to 'skip a test' because it might not be 'necessary' is ridiculous.
 
I'll tag @noblehead as he can provide you with the letter that they should be adhering to which means your strips shouldn't be limited.
 
Carry on testing as much as you need to.

Someone on here recently won and 'argument' with their surgery by sending in a letter listing the reasons why they needed whatever it was. They got what they wanted.

You could also contact your diabetes team at the hospital, if you have one.

Doctor's surgeries are all having their budgets squeezed at the moment. So any unnecessary costs (such as ANY testing for type 2 diabetics not on insulin) is being squelched. Once they get into money-saving mode, everyone gets caught up in the sweep.

Oh, and one more thing - my surgery allows for prescription ordering online (48hr turnaround) and the local Lloyds pharmacy near us are advertising organising repeat prescriptions, and actually deliver to the door. Might be worth investigating if you could use something like these near you.
 
I sympathise @dylt1 I always have to fight for the correct amount of strips each time I change meters. It makes me very angry that I have to be grilled by the 'diabetes nurse' who knows very little about Type 1. It's a stress I could do without.

It's quite understandable why you'd want to test a lot with your active life. And as an aside, the whole 28 days prescription' thing is very annoying when you have diabetes. I asked if I could have two months worth at a time, but was refused.

Well done on your good control :)
 
Brunneria said:
Doctor's surgeries are all having their budgets squeezed at the moment. So any unnecessary costs (such as ANY testing for type 2 diabetics not on insulin) is being squelched. Once they get into money-saving mode, everyone gets caught up in the sweep.
Click to expand...

Hi,

I don't quite understand how doctor surgeries work. If I need medication, is that costing them? I thought it would be the other way around.
 
@donnellysdogs can answer this much better than I, but basically they all have a certain sized budget (assigned to them), and everything gets paid for out of the budget - prescriptions, equipment, blood tests, referrals to clinics...

It is very, very complicated, and I don't pretend to understand the details. Having a diabetic on their books affects the budget a little - it goes up, but I have no idea whether that actually covers the average cost of treating that diabetic, when you consider all the variables.. But across the country, decisions are being made to choose cheaper equipment (like lower cost bg meters, and cheaper metformin rather than the slow release version which costs more). It would be wonderful to live in a world where we all got the best treatment and equipment all the time, but it would bancrupt the NHS if that happened.
 
The very new NICE guidelines also support you.
Support adults with type 1 diabetes to test at least 4 times a day, and up to 10 times a day if any of the following apply:


  • the desired target for blood glucose control, measured by HbA1c level (see recommendation 1.6.6), is not achieved
  • the frequency of hypoglycaemic episodes increases

  • there is a legal requirement to do so (such as before driving, in line with the Driver and Vehicle Licensing Agency [DVLA] At a glance guide to the current medical standards of fitness to drive)

  • during periods of illness

  • before, during and after sport

  • when planning pregnancy, during pregnancy and while breastfeeding (see the NICE guideline on diabetes in pregnancy)

  • if there is a need to know blood glucose levels more than 4 times a day for other reasons (for example, impaired awareness of hypoglycaemia, high‑risk activities). [new 2015]
1.6.12 Enable additional blood glucose testing (more than 10 times a day) for adults with type 1 diabetes if this is necessary because of the person's lifestyle (for example, driving for a long period of time, undertaking high‑risk activity or occupation, travel) or if the person has impaired awareness of hypoglycaemia. [new 2015]
Click to expand...

Personally,I think that it's only worth testing for a purpose (ie not just test for the sake of testing. In your case because it is so early on, it's really important that you establish your own individual reactions to insulin, to food,to exercise . You can't become proactive and in control if you are blundering about not being able to predict the results of your actions.
Later,you may not need so many. I get 50 strips a week which obviously works out at 7 per day. I've always had that many (and about the limit here,I'm not in the UK so NICE guidelines don't apply)
At the start I did use more and bought them specifically for exercise. That testing was really important to me .
Ten years on, I don't regularly use 50 a week anymore because I have a pretty good idea whats going on. I don't always test at 2 hours for example and I now take glucose whilst exercising when I 'know' I'm going low rather than confirming it before hand, I'm also rather better at avoiding the lows. On the rare occasions when a reading shows things aren't going as they should, then I use more to make sure I know what's going on.



 
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Keep testing as much need,I get 300 test strips per month with no problems from my surgery.
 
I've also had this problem earlier in the year when my blood test strips were changed from 10 a day to 1 and a half a day!!! I was furious as I wasn't given any consultation or warning that this was going to happen, found out when I collected my prescription. I've been a type 1 for over 40 years and need to test frequently as my blood glucose is not as stable as I like despite strict control.
I eventually, after many months got my prescription changed back to 10 a day for now but it was a very stressful period.
The new guidelines out last month is welcome news which should help to prove your case. Good luck.
 
Support adults with type 1 diabetes to test at least 4 times a day, and up to 10 times a day if any of the following apply:


  • the desired target for blood glucose control, measured by HbA1c level (see recommendation 1.6.6), is not achieved
  • the frequency of hypoglycaemic episodes increases
  • there is a legal requirement to do so (such as before driving, in line with the Driver and Vehicle Licensing Agency [DVLA] At a glance guide to the current medical standards of fitness to drive)
  • during periods of illness
  • before, during and after sport
  • when planning pregnancy, during pregnancy and while breastfeeding (see the NICE guideline on diabetes in pregnancy)
  • if there is a need to know blood glucose levels more than 4 times a day for other reasons (for example, impaired awareness of hypoglycaemia, high‑risk activities). [new 2015]
1.6.12 Enable additional blood glucose testing (more than 10 times a day) for adults with type 1 diabetes if this is necessary because of the person's lifestyle (for example, driving for a long period of time, undertaking high‑risk activity or occupation, travel) or if the person has impaired awareness of hypoglycaemia. [new 2015]

that's interesting on the high risk activities, I'd assume that applies to some of the places I work, also nice to see the exercise included there.
 
What's ur CCG territory (clinical commissioning group)

Ur local CCG will more than likely have published their guidlines. This is basically the highest level clinical guidlines for each territory (209 CCGS in UK)

I've read quite a few CCG published guideline s, and they all seem to advocate between 4-10 range - definitely 10 in ur case (active lifestyle, driver.

For ref here is the last medway CCG publication;
https://www.google.co.uk/url?sa=t&s...ewIBfA&usg=AFQjCNEZHtl-y2Glsz7QWL9Nx0N9cH9RBA

My advice would be to find the CCG publication for ur area (let me know if need any help) and shove it down the doctor's throat (not literally) - Hate this unscrupulous behaviour by some GPs - is he a partner at the surgery? must be penny pinching.

Good little article going a high level overview of how the NHS budget is divided up - shape about the lifestyle issues which are placing an unnecessary burden on the budget.
http://www.channel4.com/programmes/.../articles/all/who-pays-and-what-gets-paid-for
 
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It's absolutely disgraceful that you were told to test less as a newly diagnosed type 1. During the first few months it's incredibly difficult to work out how your BG levels are responding to different foods, insulin, activity, sleep.... the ONLY way to get familiar with everything is to regularly test. I suggest you write a strongly worded letter to your GP, citing the NICE guidelines and referencing the letter attached on this thread. There are plenty of people who don't test enough and end up in hospital every month with DKA, costing the NHS thousands - it should be doing everything it can to support those of us who take this seriously and want to self-care for ourselves in the best possible way. Don't even get me started on the amount the NHS must be saving at the moment from those of us who self-fund CGM/FGM and therefore request significantly fewer strips than usual.
 
dylt1 said:
still means I will have to pop in and out of the doctors every 2 weeks (ish).
Click to expand...
Check if your surgery has an online repeat prescription request service that you can link to Pharmacy2U's repeat prescription delivery service. I do this and my prescriptions are delivered (free of charge) within a couple of days of me requesting them online - it saves taking time out of your day to go to the surgery, wait at the chemist etc..
 
I think that to be honest some GPs resist prescribing lots of strips because they know that lots of diabetics test furiously with no discernible improvement in their HbA1c. I count myself among that number before I got my pump. For some of us testing is more of an anxiety disorder than a useful tool. (In my case, i realized later, I just wasn't compatible with Lantus. Nobody really realised this at the time - my GP, my consultant or me.)

I think that, as well as giving the letter, if you acknowledge the fact that he has probably seen this phenomenon more times than he can count (the stats say that over 70% of Type 1s have "poor control", and it's NOT all the fault of the medical profession), and then show him how well you are using your results to control your condition, he will not 'lose face' and you will not find yourself involved in a poor relationship with your GP in future. In fact, he will probably be happy to see you because at least he'll know he has ONE diabetic on his books who is doing well!
 
Change ur GP. If this 'medical professional' has the audacity to limit ur test strips soo early into ur illness, it doesn't bode well for the future. Add into the mix the extreme condescension he displayed when u told him that u "had diabetes for life".

Not all GPS are created equal, and for other posters to rationalise this kind of behaviour with "oh he's seen loadsa diabetics, majority of whom have poorly controlled diabetes" - is an extremely nieve, weak inference..

Look, it's ur health at stake. For me personally, If I was restricted to 4 strips a day, this would have a very negative effect on my control and undoubtedly lead to early complications.

It's ALL to do with money (or ignorance in some, unfortunate cases). U can either be a submissive conformist, or challenge ignorance and stand up for ur right to have the best/most comprehensive treatment that u r entitled to by law.

Food for thought below, as people love to quote arbitrary 'stats', with no context or objectivity;

Most recent (new report going to be published soon) governmental published stats concerning UK diabetic mortality and complications (don't become a stat)

http://www.hscic.gov.uk/catalogue/PUB16496/nati-diab-audi-12-13-rep2.pdf
 
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