Testing Strips and insulin dependance...

[Mini-Vicki]

hi guys,

I was wondering how many times a day on average you other insulin dependants are testing your BG?

The reason I ask is that I was started on insulin a few weeks ago, so I've been testing quite a few times a day, in order to figure out how much insulin I need, and also to see what effect it's having. I'm still in the 'getting use to it' stage, and I'm sure once I get the doses correct, I won't need to test as much. So I'm testing anywhere between 6-10 times a day, especially if I'm doing a lot of driving that day, and also if I do have a hypo at anytime then I obviously have to test again within a short period of time.

Anyway, my GP are unwilling to let me to have more than two pots of 50 strips per month. Which just isn't enough. I understand that they are expensive, and I've bought my own supply from eBay as well... Does anyone else have this problem with the GP? I tried explaining to the prescription team why I'm using so many... but they don't seem to understand and suggested I may be testing too much

 

[pippaandben]

It is against the law to drive without testing beforehand - and to test every 2 hours during driving. If you are under 5 then you must not drive for 45 minutes and must remove ignition key and move to passenger seat. Your meter is the proof that you have tested. You should ask the see the practice manager urgently to sort this out. Have you advised DVLA that you are on insulin? All is explained in the information they send you.

 

[Mini-Vicki]

Hi,
Thank you for replying. Yes I'm aware of the driving rules, and actually just received my new 3 year driving licence yesterday! I always test before I drive, and every two hours. That is why I need to test more often, and getting through more strips. I was just wondering if anyone else has problems with their doctors having strict rules on how often they can refill their prescription.
I don't mean that I've had a hypo whilst driving, I just mean hypos in general

 

[Northerner]

You're not testing excessively - you test about the same number of times a day as me, and I don't drive, so don't worry about that aspect. The main point to remember about any test you do is 'does it provide me with useful/essential information?' If yes, you need to do that test. 'Useful' might be to find out how you tolerate a particular food and if you need to perhaps amend timing/dosage. 'Essential' covers a huge range - before injecting, driving, hypo/hyper suspected or recovering from etc.

Two tubs per prescription is far too small an amount. I get 300 per prescription (6 tubs), and they once tried to reduce it to 2. I wrote a letter to the practice manager explaining how this was uneconomic and impractical and the 300 were immediately reinstated. This is what I wrote:

I am writing regarding the recent decision to reduce the number of Accu Chek Aviva blood glucose testing strips on my repeat prescription from 300 to 100 per repeat. This has been done without consulting me and therefore without knowledge of whether this is appropriate for my needs.

I have Type 1 diabetes and test on average 6-8 times per day. I need to test for a variety of reasons, but have a valid reason for every test, using the information in order to stay safe and maintain good blood glucose control. This is reflected in the fact that I have maintained an excellent HbA1c since diagnosis five years ago. I need to test before administering insulin doses, for cases of suspected hypoglycaemia or hyperglycaemia, and to monitor the effects of changes to my diet on my levels. I am also a runner and need to test before and sometimes during exercising to ensure my levels are within safe limits. I also need to test more frequently during periods of illness, or when my insulin requirements are changing due to a number of factors thus making insulin dose calculation less reliable. Furthermore, it is a requirement of the DVLA that I test before driving, and during long journeys in order to avoid hypoglycaemia.

Restricting me to 100 strips per repeat will entail putting in a new request every 12-14 days instead of the current 6-8 weeks. All other items on my repeat provide for 6-8 weeks supplies. It is illogical and inefficient therefore to place this restriction on my supply of test strips since it entails not only inconvenience and wasted time on my part, but also extra work both for the surgery and pharmacy, and therefore extra cost to all parties. I feel that this is an unnecessary and inappropriate use of NHS funds.

I would ask therefore that you restore my request for 300 Accu Chek Aviva test strips and issue me with an amended repeat prescription.

 

[Matt Cycle]

Hi Vicki

The attachment is from the DoH regarding provision of type 1 and test strips. Even though it was sent to all GPs take it to him/her and show them.

https://www.gov.uk/government/uploa.../Safe-care-of-people-with-type-1-diabetes.pdf

 

[Mini-Vicki]

Thank you both for your help! I'm reassured that I'm not testing too much. I'm always aware at the back of my mind how much these things do cost the NHS, but also I think it is better that I have control of my condition, rather than being hospitalised and potentially costing the NHS much more money! I will definitely write to the practice manager, and also include a copy of the DoH letter as suggested.
I have an appointment with my diabetic specialist nurse in a couple of weeks, so hopefully she will write to the GP for me as well.
My specialist nurse is brilliant, and very relaxed about how much I test... the GP not so much!

 

[miguel81]

I'm having a little trouble at the moment with my supply of BG Star strips. I went to the practice nurse who has renewed my prescription until April 4th next year BUT the paper has to be delivered to my pharmacy, they then take these documents once a week to Baeza where they are registered, the computer updated and only then can I get more strips, I didn't know that this was the procedure. Unfortunately I only have 4 strips left and it could take until next Friday before the records are updated. Hmm. The pharmacy manager 'suggested' that I could buy a pot of 50 strips for €80.00 which at today's rate of exchange works out at about £57.00! No wonder the manufacturers give their meters away for free. I may have to go to the emergency room in Baeza and plead. I'm not very good at pleading - perhaps I'll just 'faint'.

 

[Northerner]

Thank you both for your help! I'm reassured that I'm not testing too much. I'm always aware at the back of my mind how much these things do cost the NHS, but also I think it is better that I have control of my condition, rather than being hospitalised and potentially costing the NHS much more money! I will definitely write to the practice manager, and also include a copy of the DoH letter as suggested.
I have an appointment with my diabetic specialist nurse in a couple of weeks, so hopefully she will write to the GP for me as well.
My specialist nurse is brilliant, and very relaxed about how much I test... the GP not so much!

I once read a book aimed at GPs and other healthcare professionals about diabetes and it recommended a testing limit of 2, possible 3 strips a day for a Type 1 😱 It wasn't an old book either! So it's easy to see how they get it wrong if this is what they are told. My own GP, who is excellent, was really surprised when I explained to her why I tested 'so much'. As you say, better to test, stay safe and control your diabetes than end up in A&E which wolud wipe out any 'savings'.

 

[Sally71]

We test before every meal and at bed time, and then extra ones as required if we suspect hypo or hyper, or if daughter is ill, or if things have been a bit unstable and we are trying to get it under control again. Obviously we don't have to worry about driving yet! When daughter was diagnosed the DSN wrote a letter to our GP detailing everything we might need and pointing out that test strips should be issued on request and not less than 4 boxes (200 strips) at a time. So we get 4 boxes at once and that just about lasts a month. Our GP has been really good so far, so hopefully wouldn't complain if we said we needed a few more!
As has already been said, if each test you do tells you something useful then you are not testing excessively. Hope that helps 🙂

 

[KookyCat]

Ah the test strips battle, one very familiar to me unfortunately. We got to the point where one GP said I had to bring in all my test data, including my meter and they would decide if I needed that many test strips. What a silly, silly man. Until that point I'd been quite calm despite being limited to two pots of test strips a month (and having to buy them myself), then restricted to 100 needles a month because they are incapable of comprehending that injecting 4 times a day requires more than 100 needles, and of course their refusal to provide ketostix on prescription or a sharps bin (the list goes on). Once he'd said that the gloves came off, and I left with 4 pots on repeat. He was lucky to come out alive because he really was obnoxious. The latest trick is one basal pen a month, which isn't enough obviously, but that's OK I'll just take less😱

Tell your GP that you need to test more and if that fails I find the consultants intervention usually does the trick. Doesn't work if the nurse does it sadly, but works every time if the consultant does it. I have no idea why they have to make everything so stressful and difficult, driving an internal organ on manual is hard enough without them making things more difficult. Good luck and don't give up!

 

[Hazel]

I am T2 on insulin - I am lucky enough to be prescibed 4 x tubs every 8 weeks. I think in Scotland we are quite well looked after

 

[Mini-Vicki]

Ah the test strips battle, one very familiar to me unfortunately.

I'm sorry you're having the same problems Kooky Cat, I think maybe the GPs just aren't as up to date on things they should be really... I was originally diagnosed as type 2, and for several years my GP made me feel incredibly guilty that I wasn't gaining control!

I'm seeing the consultant for the first time in a few weeks, I'll have a word with him then, and hopefully convince the GP to give me more than one vial of humolog at a time as well.... a whole other story!

 

[Matt Cycle]

Unfortunately, I think the test strips issue is going to run and run and with the NHS finances as they are is probably going to get worse. One of the issues I have is the complete inconsistency in who is allowed to get what. This seems to be between different CCG's, different practices and even between medical professionals within the same practice. Not everyone (including me) is comfortable at demanding things even if we are entitled to them.

So we have the situation of some T1's being restricted on meter choice and number of strips and with T2's it varies all the way from no meter or strips through to unlimited supplies. Consistency in how it is applied is what's required.

 

[Northerner]

They need to understand the condition better, and how it can best be controlled using the modern tools and regimes available. If they don't or can't understand it, take the advice of those who do, and that will never be the accountants or politicians! There ought to be some sort of 'Diabetes Ombudsman' - there are enough of us! - who can ensure that ALL get the items required to meet their individual needs, and who we can report ludicrous, let's call them 'misunderstandings', to so that vigorous action is taken to ensure those nonsensical notions never get presented to anyone again. I'm thinking about test strip limitation particualrly, and more seriously insulin limitation (though hopefully less common). We have to remember that many people will believe their GP or nurse without questioning anything and this can lead to harm. The GPs oath is to 'do no harm', yet I have seen countless manifestations of the kind of behaviour that will almost inevitably lead to harm, either acute like DKA, or chronic, like complications. I remember one member being told to use less insulin and they could reduce the amount they used by not doing an 'airshot' prior to injecting! 😱 Stupid, stupid, stupid. GPs should not assume their authority gives them greater knowledge of a condition that their patient's have an intimate 24/7/365 experience of! And the economic reality of how the greatest proportion of diabetes spending goes on largely avoidable complications, not the tools which may reduce them siginifcantly.

Rant over (for now!) 😱 😡

 

[trophywench]

I am T2 on insulin - I am lucky enough to be prescibed 4 x tubs every 8 weeks. I think in Scotland we are quite well looked after

200 strips to last you 56 days? and you call that lucky? If you only needed to test 4 x a day you would run out - and what about if you need to drive or happen to have a high a hypo or are otherwise ill?

Ridiculous, Hazel.

 

[bigheadmike]

I normally test 6-9 times a day, but I drive for a living. I am not as good at testing when I am not driving though and can sometimes only test 1 or 2 times a day. I get as many test strips from my gp as I want, 3 pots at a time.

 

[everydayupsanddowns]

The latest NICE guidelines for T1 (which also cover LADA as a subset as far as I know) recommends *at least* 4x a day and up to 10x a day in particular circumstances (just the ones you describe).

These have been run through careful economic modelling during guideline development and have been shown to be cost effective.

 

[Matt Cycle]

The latest NICE guidelines for T1 (which also cover LADA as a subset as far as I know) recommends *at least* 4x a day and up to 10x a day in particular circumstances (just the ones you describe).

These have been run through careful economic modelling during guideline development and have been shown to be cost effective.

Yes, for T1's it's at 1.6.10.

http://www.nice.org.uk/guidance/ng17/chapter/1-Recommendations#blood-glucose-management-2

I get 150 per script but this can mean more frequent visits to the GP and pharmacy. I test on average 5-7 times a day but this can vary considerably on what I'm doing. Out on the bike I can test several times and overall it may mean 10-12 times testing that day. This fits in with one of the NICE criteria which states:

1.6.11 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:

• before, during and after sport

Or even

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]

 

[Northerner]

There are a lot of people on insulin who are diagnosed and on the books as Type 2, whether mistakenly or truly T2, I think the 'Type1' should not apply as it is used by GPs to restrict people if they are not diagnosed as such - the medication regime should surely be what is important, not simply the diagnosis designation.

 

[AlisonM]

Before I was re-diagnosed I was often criticised for 'over testing' and repeatedly told I was 'obsessed' - at the time was learning about my diabetes and what food and execise did to me, arguing my case did me no good at all. Nowadays, I test at least 6 times per day and often more, but I still get lectured about strip usage from time to time. It got so bad at one stage that I complained to my consultant and he sent a letter to the surgery detailing my requirements. I still get occasional questions about how many I use, but now I simply refer them to the consultant and they shut up.

I'm firmly convinced that ALL diabetics can benefit from being able to test and that denying the facility is a false economy and very short sighted. If people are helped to understand how to interpret the results and adjust their lifestyle accordingly then the NHS would save millions by having fewer people suffering complications. These complications are not automatic, having the proper tools and training could prevent them. It's so simple, why can't 'they' see it?