Test strip restrictions for type 1

[chris m]

I was hoping to get a feel for how many type 1s are having problems with restrictions on there blood testing strips. I have had a letter telling me that they want to restrict my number of strips i use, and if i need any more i need to purchase them myself. I feel that with new DVLA instructions ans the amount of driving i do, combined with the fact that i use dangerous machinery at work means i need to use the amount that i do. Has anyone managed to convince the gp practice that this is unacceptable? If so how?
Chris

 

[Robster65]

Hi chris.

How many do you use and what are they restricting you to ?

Rob

 

[Northerner]

Absolutely not Chris - get you DSN or consultant to write to them if necessary. Anyone on insulin or a medication that may cause hypoglycaemia should NOT have restrictions placed on the number of strips issued! You should certainly not be expected to buy any yourself!

It is unacceptable, dangerous and misguided to suggest that this kind of restriction should be applied to anyone in your circumstances, so don't stand for it! Personally, I never have problems (so far!) getting strips - I get 300 per prescription and my GP knows that I can account fr every strip used i.e. each test provides information to help me manage my diabetes and keep me (and others, if you drive/operate machinery) safe from harm.

I suspect this is a blanket restriction issued for everyone with 'diabetes', regardless of type or personal requirements.

 

[Ellie Jones]

Can I ask how many they are saying is an appropriate amount per month?

If you are under the hospital I would have a word with your consultant/team they will send a letter to your GP telling them they have to prescribed strips, a GP can't undermine the decision of the consultant...

If you under the doctor is harder, you need to firstly speak to the doctor armed with why you need to test..

I would write a letter, which basically says,

I (your gp) have informed (your name) can ignore all advice concerning testing of his blood glucose levels given by the DVLA, also of his employer concerning his safety within his work environment. I take full responsibility of this advice and it's out come!

You then book an appointment, argue your side take a copy of the DVLA driving advice, and if you can get a letter off your employer take that, if S/he still refuses to listen to your needs you ask him/her to sign your letter to take the responsibility!

If they refuse you have to contact your PCT concerning this, as your doctor has to supply a reasonable amount to cover your specific needs/circumstances...

If all fails, it's threats of getting your MP involved

And the media who wouldn't miss the opportunity of taking a pot..

Hope you get it sorted

 

[Robster65]

Sadly, even DUK say that on a pump, you should test at least 4 times a day.

The nurses/GPs read that and think that on a bad day we'll test 5 times, so why do we need more than say, 4.5 per day ?

I've been through the process and have reached a truce with the nurse, who wanted to reduce mine. If you can show them a testing diary/graph with a reason for each test, and preferably a consequence of not testing (eg. couldn't drive, would have gone hypo/hyper, needed to jab, etc) then they can't easily argue.

If they do, then you can go for the obvious "I can't drive/inject/live without knowing what my BGs are and they don't follow a nice, easy response like the textbooks say they should".

If they still insist, then ring them every time you need to inject and ask what you shoudl do.

Rob

 

[martindt1606]

My usual GP has always been very good and signed off repeat prescriptions with no problems.

On completion of the DAFNE course I came away with a new meter requiring new strips and lancets and a recommendation to change to the new novorapid pen and to the new lantus cartridge pen (both easy touch).

I couldn't see my usual GP so saw one of his partners in the practice. If my usual GP was good this one was great. He asked how many units I wanted - I had a monthly repeat prescription so asked for what I calculated to be a months supply - and he then doubled the number for the prescription. I expected that the next date would therefore be January - but no double the amount on a monthly basis if I required it. It was a good call by the GP as following DAFNE I do seem to be testing a couple of times more per day.

Means I can maintain a buffer stock and submit the repeat prescriptions when I need supplies without having to take holidays and weekends into account.

 

[Robster65]

My usual GP has always been very good and signed off repeat prescriptions with no problems.

On completion of the DAFNE course I came away with a new meter requiring new strips and lancets and a recommendation to change to the new novorapid pen and to the new lantus cartridge pen (both easy touch).

I couldn't see my usual GP so saw one of his partners in the practice. If my usual GP was good this one was great. He asked how many units I wanted - I had a monthly repeat prescription so asked for what I calculated to be a months supply - and he then doubled the number for the prescription. I expected that the next date would therefore be January - but no double the amount on a monthly basis if I required it. It was a good call by the GP as following DAFNE I do seem to be testing a couple of times more per day.

Means I can maintain a buffer stock and submit the repeat prescriptions when I need supplies without having to take holidays and weekends into account.

That's an ideal situation. Wish they'd all be so sensible. They treat insulin & test strips the same as water tablets. If you run out, never mind, we'll get you some tomorrow.

Rob

 

[vince13]

How many test strips per month are they trying to restrict you to ?

 

[Unicornz]

They have sneakily reduced my strips twice before when I changed BG machines but a quick telephone appointment with the GP has sorted that out with no problems each time. Thankfully I've never had to explain myself they seem very understanding and put the amount of strips I use back up to the normal amount no questions asked! I get 300 on each prescription now which lasts me just over a month.

Good luck sorting yours out, I definitely wouldn't stand for a reduction. You need what you need to stay healthy and no one should think they have the authority to restrict your chance of a long, healthy, complication-free life.

 

[Northerner]

I'm sure they must save a lot of money using these tactics. There must be thousands of people with strips on prescription who won't challenge a reduction. There may even be (can it be possible?) people whose doctor has prescribed strips to, which they collect but then never use 😱

They really ought to use some common sense to filter who they are targeting though - someone on 4 injections a day needs a minimum of 4 tests, and then there are all the extra reasons for testing which may not happen every day, but some of them might. My meter software tells me that I have averaged 6 strips a day since diagnosis. Some days I might use 4 or 5, some days 8 or 9 - but I have a reason for every one. I know that some people on pumps or with erratic control/unpredictable lifestyles need many more to stay safe and well.

 

[Robster65]

On unpredictably busy days, like today, I feel the need to test about 7 or 8 times due to feeling low symptoms. I'm supposed to be going out about now but tested at 4mmol, so have eaten and am sitting tight.

Symptoms aren't always clear cut and the only way to know is to test. But what keeps you steady today could send you up or down tomorrow. One can only presume that GPs are blessed with metabolisms that remain stable 365 days of the year, since they often claim that we shouldn't need to test often if our HbA1c's are ok.

Must be nice to have a body that self-regulates.🙄

Rob

 

[Robster65]

And on that thought, I wonder how often the 'normal' pancreas monitors BG through a day. Thousands of times perhaps ? Or infinite ?

So 7 or 8 times a day isn't so excessive, no matter what the accountants say.

Rob

 

[Marc]

I've had an idea of a bit of a publicity sunt campain we could try. That is to publicly challeneg MPs, the Health Sec, Deputy PM and PM to walk up a set of stairs blindedfolded and relate that too being asked to live life as a diabetic without bloodtest strips. It would be good to have some stick thin Type 2s around and Type 1s that don't bury their heads in the sand.

Just a thought what do you think?

Marc

 

[trophywench]

Just someone at the surgery too lazy to check the patient codes on their ruddy screen. Or the practice manager interpreting the instructions incorrectly - they aren't medically trained, what can you expect!

I certainly wouldn't panic - I'd either make an appt to see my GP or write him a letter.

Failing that yes - my DSN most certainly would LOVE to write to my GP and tell hm where to get off. She's been wanting to tell him that to his face ever since January 1998 when she first met me! LOL

They do do their best usually - GPs have 'codes' to override any PCT diatribes when prescribing drugs etc - mine did it when showing me certain things on his computer screen! (PCT had banned certain ARBs one of which I was on. He needed to look the old one up to see what mg of the 'allowed' one to prescribe to be equivalent but to get to the info on the old one - he had to override the list of 'allowed' ones.)

 

[Copepod]

I was a volunteer in a hypoglyaemia study a few years ago, which involved being on a glucose and insulin drip so experimenters could manipulate my blood glucose levels, while I was in a functional MRI machine, looking at pictures of food and other things and estimating my blood glucose levels when they were also checked. Unfortunately, the sedond part of the study was never carried out, so I never found out how close my estimates were to reality.

 

[FM001]

if only these doctors and practise managers could walk in our shoes for the day then they would know why we test so much😡

A letter from a consultant is sufficient to get them off your back, my doctor tried to tell me I was testing far too much with a view to restricting strips by 50 each repeat, he wouldn't budge until diabetes consultant intervened.

 

[Twitchy]

Hi, i had a similar problem a while back... I wrote to my mp & got her to specifically ask the health secretary if medical consumables (eg test strips, pen needles & lancets etc) were being rationed now for type 1s. I got contrite replies from the health secretary & the local pct head stating that the items were not / should not be restricted. I'd urge EVERYONE who experiences attempts to restrict items like this to do the same- it didn't take much effort & I' convinced it's the only way we will get our voice heard collectively by govt & not be seen as an easy target for cuts!! (esp given the current media obsession with presenting us all as fat, lazy nhs resource eaters!! 😡 )

 

[vince13]

It seems that Chris M has still not replied to how many strips are they trying to restrict him/her to or how many times he/she feel the need to tests now. Bit difficult for us to answer the questions if nothing is forthcoming on these points I think ?

 

[sue shaw]

restriction on test strips

Hi Chris,
I'm type 1 diabetic (diagnosed this summer, aged 55).
Yesterday my Pharmacist told me that my doctor has decided to ration me to 3 boxes of test-strips a month ie 5 a day. I can't meet my obligation to the DVLA to test when I drive under this regime (I live in the country and have to drive to work, and back, to the shops and back, and to take my kids to their appointments). I can't test during exercise, or when I'm ill (I'm asthmatic as well and get lots of chest infections); I can't test when I'm working (I work with a very demanding autistic boy). I'm newly diagnosed and have not yet been on a carb-counting course, so I can't check and correct blood sugar if I take the wrong amount of insulin. I'm currently getting 2 hypos a day and I can't check for these either. My diabetic nurse was sympathetic, but said that anything beyond testing 4 times a day is a 'life-style' choice.
This is utter c**p.
It sucks. It's dangerous and type 1 diabetics need to get vocal and angry about these sort of restrictions. Diabetes UK say they are getting loads of people from all over the country complaining about them. They say that some type 1 diabetics are being told to test just twice a day or in some cases twice a week.
These kind of restrictions will result in the NHS having to pay far more to support people with resulting complications.
I have no choice but to fight this rationing, because I can't live without more test-strips. I have two children aged 6 and 11. I have a responsibility to keep them and myself safe.
However, it's come to something when you have to be afraid of your own doctor, because they literally are weilding the power of life or death over you. And also, my worry is that this is just the beginning. If these kinds of restrictions go uncontested, we may looking at the total withdrawal of teststrips further down the line. We have to fight it.
Sue

 

[Twitchy]

Sue - have you tried your MP?? Or threatening to go to your local paper? Do you have a consultant who could get involved?...afraid dsn's are not always up to speed & if she's calling testing more often 'a lifestyle choice' she's clearly not up to date at all!!! 😡 best of luck, you're right to fight this!