Petition for the limits on prescriptions for testing strips

[koko1987]

Hi all

I am completely new to this so thought I should start by saying hello. I'm 24 and have type 1 and was diagnosed exactly 14 years ago last month. I also have Poly Cystic Ovarian Syndrome (PCOS) which if anyone has this and type 1 or 2 knows it affects your control in quite an adverse way due to hormonal swings.
My PCOS was only diagnosed at the beginning of 2010 when I went to the GP about my erratic periods and she asked me if I had always suffered from Acne.
I already knew I had it but my diabetes consultant/s at the time refused to accept this or even test for it one even quoting the problems I was having with control were all my fault which I knew was not the case. In 2009 I asked this same consultant for the test again and I quote she said "your an adult now, hormones do not affect your diabetes anymore" I subsequently walked out and never saw her again and returned to my original consultant who after years of blaming my poor control on me finally admitted he had got it wrong and apologised.

Anyway the only thing that has kept my BM's and HbA1c at a good level is doing 10+ BM's a day. My BM's swing uncontrollably some days. My reading can be 20.1 so I will do 4 units of novorapid without food and an hour later my BM will have risen to 25.9 so I will do 5 units and again it won't move so I will do another 5 units. This can go on for hours. I have tried everything from changing my diet to constant night time BM's absolutely nothing changes the outcome.
And in the last few weeks I put my repeat prescription into the GP for testing strips and only received 3 boxes of 50 strips supposed to last me for 6 weeks. I get through almost 3 boxes in just over week sometimes! My previous prescription was for 10 boxes and they changed this without even contacting me! This has caused me no end of worry and stress!
I didn't get anywhere with the GP and have another appointment tomorrow. I am getting sick to death of the way diabetics are being vilified by the Government and the NHS, my consultant has told me on a number of occasions the diabetes care is this country is way below standard.

I am asking you to please sign the following petition and to pass it round to friends and family - http://epetitions.direct.gov.uk/petitions/21905.
If my GP still refuses to do anything I will be speaking my local MP and other groups this isn't going to be something I am going to give up on. Its not fair on any diabetics.

Thank you!

 

[Unbeliever]

Re: Petition for the limits on prescriptions for testing str

If patients were treated as individuals it would be better for us all. I personally, do not believe that any petitions will make an iota of difference to the government. They have been old by the medical establshment that T1s can get by with a certain number of test srips and T2s don't need o test at all
and that is it.

In your case I do hink you have o insist upon being treated as an individual, Try to get the consulant to back you up on this with your GP. It is still very much a postcode lottery too. When I tried to buy test strips over the counter in a pharmacy a few miles from where I live they thought I was mad and old me hat most diabeics in heir area have several boxes of strips per week mand hey were alkimg about T2s.

I have not been refused est strips by my Gp because I am on a small amount of hypo-inducing medication bu I limit the amount I ask for very strictly - one box about every 6weeeks and but twice the amount myself.

YI would write to the consultant if I were you. Your GP would probably have to listen but if not you could contact the PCT.

I think everyone should lobby MPs on this issue. The government are probably unaware that this is an issue. They probably only listen to the BMA and whoever does the costing and DUK -who- whatever they may say now seem to have been responsible for a whole generation of GP's having it firmly in their heads that teasting is unnecessary for T2s and that T1s can manage with a minimum no of tests.

I know - we have three young Gps in my practice -rained in different places but all chanting the same mantra and quoting the source as DUK. And this without being asked or consulted about diabetes.

 

[AMBrennan]

Re: Petition for the limits on prescriptions for testing str

There is already an e-petition for increasing access to test strips (somewhere) on this site. It might be easier to achieve the minimum number of signatures by focusing efforts on one such petition.
[I'm sure my post will attract supporters of that petition]

 

[koko1987]

Re: Petition for the limits on prescriptions for testing str

If patients were treated as individuals it would be better for us all. I personally, do not believe that any petitions will make an iota of difference to the government. They have been old by the medical establshment that T1s can get by with a certain number of test srips and T2s don't need o test at all
and that is it.

In your case I do hink you have o insist upon being treated as an individual, Try to get the consulant to back you up on this with your GP. It is still very much a postcode lottery too. When I tried to buy test strips over the counter in a pharmacy a few miles from where I live they thought I was mad and old me hat most diabeics in heir area have several boxes of strips per week mand hey were alkimg about T2s.

I have not been refused est strips by my Gp because I am on a small amount of hypo-inducing medication bu I limit the amount I ask for very strictly - one box about every 6weeeks and but twice the amount myself.

YI would write to the consultant if I were you. Your GP would probably have to listen but if not you could contact the PCT.

I think everyone should lobby MPs on this issue. The government are probably unaware that this is an issue. They probably only listen to the BMA and whoever does the costing and DUK -who- whatever they may say now seem to have been responsible for a whole generation of GP's having it firmly in their heads that teasting is unnecessary for T2s and that T1s can manage with a minimum no of tests.

I know - we have three young Gps in my practice -rained in different places but all chanting the same mantra and quoting the source as DUK. And this without being asked or consulted about diabetes.

Thank you for your support, I am not sure either what impact it will have but just feel I need to do something, not just for me but other diabetics too. It annoys me how vilified T1 and T2 are in the media and by the NHS or PCT's. I will be writing to my local MP he was the Shadow Secretary for Health before the Tories came to power so hoping he can advice me on this and what steps I need to take.

I think the e-petition website is quite bad for letting you put up multiple petitions for the same subject but it was the only petition I saw on there.

I did have some luck today with GP she has increased my script to 5 boxes but its still only half what I was getting. I told her I would see how I cope on that amount but will be back if I need more, she didn't look to happy about that!

It does really annoy me that GP's, Consultants and nurses treat all diabetics as textbook hardly ever listening to the patient. It took my consultant 10 years to finally start listening to me and when he did my HbA1c come down from over 10.0 to 7.0 through new treatment and better one on one care, it really does make a big difference when they listen to there patients.

 

[Emzie-Bub-xo]

Re: Petition for the limits on prescriptions for testing str

I have the same problem with strips! I get 2 boxes of 50strips per prescription and NO more! Seen as im testing 4-5 times a day, 100strips are soon gone after 2 weeks and as I live far away from my local chemist I have to go back every 2 weeks to order more! Its unfair that they limit the amount of strips we receive, and i also have been glared at for buying them when ive needed an emergency supply! What harm is it to give us as many boxes of strips as we like?? Hmmm...

As for ignorant gp's, ive also had my share! I am personally adament there is a reason why my sugars are so eratic, even when im trying my best to keep it under control, im sure its pcos, but none of my diabetes team will have me tested...my high hba1c is apparently down to me being "stubborn" and "in-denial" hmmm ok...feel as frustrated as you do! Something should be done for us...we are people just like the rest of them!

 

[hamish112]

Re: Petition for the limits on prescriptions for testing str

Same problem here. My GP just reduced my repeat prescription for test strips by a third without consulting me or bothering to find out what I do on a daily basis. So I made an appointment to see him to find out what the problem was. After telling me that my use of testing strips was 'crazy' I simply asked him which tests I should stop. Pre meal perhaps or before I run at lunchtimes or before the gym or spinning in the evening? Maybe before driving or cycling to work? Or when hypo perhaps? The problem with not knowing your patient is you don't know how to help them it would seem. I spoke to my diabetes specialist nurse and dietician and they have written to my GP asking him to prescribe enough strips for me to manage my type 1 diabetes safely given my lifestyle. More on this when I see the response from the GP. he did suggest that I didn't need to test before eating - I managed to not laugh given that I use a pump which he was well aware of and the aim of which is to more tightly control my BG levels!

 

[johnstoc]

Re: Petition for the limits on prescriptions for testing str

Prescriptions are a funny old thing.

They (the GP) give me enough insulin for 3 month at a time - Great.
They give me enough Needles for one month.
They give me a small sharps bin that lasts maybe 1.5 weeks (1ltr)
They give me (no matter how many times I ask for more) enough Test Strips for 2 weeks max
(Test Strips come in boxes of 25, 1 to be used for control solution, so thats 24 in a box for me to use)

Would it not be easier & cheaper (saving on admin costs) to give us enough of what we need to last the same amount of time (maybe 2 or 3 months worth each visit). That way we are not going back re-ordering every week or 2?

.... I went to France a few weeks back so asked for a larger sharps bin.... 'We can only give you a 1 litr bin' OK I said, give me two.
'O we cant do that! We do however have a spare sharps bin in the back. Our own stock. You can have that'

Great I said. Many thanks. 7.5ltr WOW that will last the holidays and then some. Wasnt till I got home I noticed theres no lid to it !!!

 

[ljwilson]

Re: Petition for the limits on prescriptions for testing str

I get as many test strips as i ask for, each time I get 4 boxes which contain 3x17 and I usually get 1 or 2 lots a month, i must be one of the lucky ones?

Lorna

 

[))Denise((]

Re: Petition for the limits on prescriptions for testing str

Lorna, its Type 2's who get their strips restricted or not prescribed at all. Type 1's don't usually have problems.

 

[steve_dear]

Re: Petition for the limits on prescriptions for testing str

@koko1987 it sounds like you are testing and injecting too frequently, but also that your BMs are overly eratic. I totally understand this as mine have been similar. However I only get 1 box of 50 strips on each prescription so I need to order them quite often. I even had the GP pass a message (to the receptionist) which I got when I next happened to call in which said "I'm not filling that prescription, I filled out one the same just 2 weeks ago" and it was for different test strips, the meter had changed .

It sounds to me like your control would be VASTLY improved and the costs to the NHS reduced by you getting a Continuous Glucose Monitor. One sensor would last a week (~£40), your strip cost (to the NHS) would be around £75 a week. I would suggest taking this to your PCT (or whatever it is called now) so 1) they can see your control better and 2) save themselves a lot of costs

Hope the petition goes well, I've signed.

 

[Grazer]

Re: Petition for the limits on prescriptions for testing str

Lorna, its Type 2's who get their strips restricted or not prescribed at all. Type 1's don't usually have problems.

Denise, think you may have misunderstood the thread? Apologies if not, but this is a type 1 forum and it's type 1's discussing how their strips are limited and causing them problems. All the other posters here are T1s.