Restriction of Testing equipment/strips

[Simon1995]

Im 18, i have had diabetes for almost 2 months, when i was ill my blood sugar reading was 'HI', 33+ i believe, even though i felt completely normal, anyway, when i went to pick up my first prescription, i ordered 2 boxes of 50 test strips, when apparently i ordered one, i thought i was wrong, an put it down to my error. second time, same problem, 1 box there when i ordered two, i was sure i was right. I went down to my GP and told the receptionist and said i ordered 1, so they must have changed my prescription order. I said that was no good and i needed at least 3 so i had extra, she said they only allow 2 at a time, :lolno: i desperately needed strips, i test 6-7 times a day, she seemed shocked when i told her, eventually she typed up in my notes that i needed at least two boxes of 50 test strips. What a carry on i couldn't believe it. They tried to ration my strips having only been 1 month diagnosed, and they didnt have the guts to tell me straight they rationed them, thankfully its sorted know i hope i don't go through this again.

 

[SimonClifford]

100 am month! That's not many at all! I'm wondering if I should go to 250 a month from 200 (and that's rationing myself & guessing a bit!)


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[Emma1990]

I've had the same problem recently. I've been t1 for 16 years and this past year has been extremely annoying. My doctors surgery will only prescribe me 100 strips a month, yet I'm on an insulin pump which requires me to test a minimum of 5 times a day and also the dvla requiring me to test each time before I drive. I've just had my prescription rejected for the second time and I've got to live on 30 strips for 2 weeks! Completely fed up of it.


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[SimonClifford]

I wonder if the DVLA have any advice for drivers who are forbidden to test because their GP will not prescribe the test-strips they require to be lawful?


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[julie54]

Emma1990 - you really need to complain vociferously about the restriction of test strips as you are a Ti diabetic and there is a requirement for you to test before you drive etc. Has your G.P. got a Practice Manager? You need to point out the risk factor of your not being given the appropriate equipment in order to comply with DVLA requirements. Also, you need to make contact with your local CCG (Clinical Commissioning Group which has replaced the PCT) - you should be able to find their contact information if you google CCG and your town. Send them a letter in the form of a Complaint. I am more than well aware that T2 diabetics are being restricted on test strips - but it is absolutely ludicrous to restrict them for T1 diabetics!! Make them aware that this is totally unacceptable and that you will take the matter further unless they provide you with strips which are sufficient to allow you to test regularly to monitor your blood glucose levels. Tell them exactly how many this entails - and stand firm! Good luck!!

 

[Murphycat]

I have had type 2 for about 5 years but have never tested it myself. I have had long chats with my GP who I see regularly for other issues. He is adamant that I don't need to test myself and says it is NHS policy not to prescribe.

I am on Metformin maximum dose. I would love to be able manage my diabetes by diet alone but without testing daily how can I tell what effects various foods have on my blood sugar?

I get my Hb1Ac measured regularly but this still only gives an average over the three months. Both my GP and my diabetic nurse tell me this is far more important than daily readings.

I am on ESA until I retire in 18 months so there is no way I can afford to buy the strips without prescription

I have had 3 hospital stays since I was diagnosed, one was for a month when I was seriously ill with an infection. They tested my blood sugar regularly so it is important when you are ill but apparently not otherwise.

How do other people resolve this?

Apologies if this subject has been covered many times but there are an awful lot of posts on this site.

 

[julie54]

Well done nomisthman!! Your results are excellent and clearly 'proved' to your GP that you are motivated and using the test strips responsibly!! Although where the idea comes from that the 'majority' of type 2 diabetics are not motivated never ceases to surprise me - there seems to be a wide assumption amongst the medical profession that type 2's just stick their heads in the sand and do not have motivation or commitment - maybe it would be beneficial if G.P's spent a little time reading through the threads on these forums!!! May I ask what regime you have followed in your management/control - i.e. diet etc.? Again - well done! Julie

 

[maisyme]

I've been type 2 for about 7 years ..not on any medication ...diet only....i bought my own meter and got the testing strips and lancets on prescription.....my blood sugar was always around 5.3 to 7....i was happy that i could tell what it was....but last year i was told that i couldn't get any strips on prescription.....because of the cost....if i had been on medication i would have got them...i was told if i felt ill i should come to the nurse or doctor....now i never know what my bg is...

 

[maisyme]

that is so,so, bad...for someone on an insulin pump not to have enough testing strips....that is criminal.....how on earth are you meant to monitor your bg??? money always has to come into it...

 

[mrman]

I've had the same problem recently. I've been t1 for 16 years and this past year has been extremely annoying. My doctors surgery will only prescribe me 100 strips a month, yet I'm on an insulin pump which requires me to test a minimum of 5 times a day and also the dvla requiring me to test each time before I drive. I've just had my prescription rejected for the second time and I've got to live on 30 strips for 2 weeks! Completely fed up of it.


this is totally unacceptable, someone did post a copy of a letter to download starting the guidelines for gps. My prescription allows 300 at a time and can order without restriction. Speak to your diabetic nurse/consultant and ask them to forward a letter to your gp advising u need x amount of strips per month. If no luck there get in touch with nice. How r you supposed to run basal tests, before and after meals on a limited supply. Also, exercising requires adjusting. And as u pointed out already need to test EVERY time before driving. Good luck.

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[Emma1990]

Thank you. It seems like I'm just banging my head up a brick wall. It's overly stressful but I feel at a loss to be able to keep control of my blood sugars. I've got to get in touch with my diabetic nurse to see what he says.


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[julie54]

Having heard that Sir David Nicholson, CEO of the NHS was recently diagnosed as a T2 diabetic, and that he chose not to take the medication route, but to use diet control, and furthermore that he was given a meter and strips, and that he tests himself 4 times a day and keeps a chart to monitor his progress - I just felt really angry that this is denied to so many T2 diabetics - (and now from the information on this thread that it is now being denied to T1 too!) that I wrote to him. I must admit that I did not expect a reply, but was surprised to find an e-mail in my inbox tonight! The reply does not give any potential resolutions, but having said that he does give links to some very useful information which may help in challenging your G.P's. One of given links is:
http://www.diabetes.org.uk/Documents/Ad ... k-0613.pdf
and also a link to the latest NICE guidelines for type 2 diabetics:
http://www.nice.org.uk/nicemedia/pdf/CG ... idance.pdf

Both of these documents are well worth a read and will give 'ammunition' in stating your case for the continued prescribing of test strips.

Sir David Nicholson did at least take the time to reply to me - and I would advise others to also take the time to write to him - it may be that the more that he hears from individual people, the more likely it is that there may be some changes in the prohibitive stance being increasingly taken by G.P. practices. His e-mail address is : [email protected] -and mark it for the attention of Sir David Nicholson.

 

[julie54]

Emma1990 - with specific regard to T1 diabetics, please check this press release out.
http://www.diabetologists-abcd.org.uk/T ... elease.pdf

Mentioned in the contacts for the press release is Dr Jonathan Valabhji, who is working with NHS England to provide clinical leadership and expert advice. His e-mail address is given, and I would suggest that if you are still experiencing problems with accessing sufficient strips to maintain the safe management of your condition, that you should e-mail him detailing your experiences and requesting his help and advice. I am a very firm believer in 'nothing ventured, nothing gained' and this is too serious a situation not to take whatever measures are necessary in order for you to achieve the best possible outcome for yourself. Let me know if I can be of any further help - but do keep the pressure up - you owe it to yourself! Good luck!. Julie

 

[elaine77]

I'm slow-onset type 1/1.5 so not on insulin yet and I get strips on repeat but only 2x boxes per prescription. Initially when I was mis-diagnosed the DSN said I only needed to test 'twice a week' and the strips were very expensive, then my consultant said I need to test at least 3 times a day incase there is a deterioration as they can come on quickly - she never mentioned it after this and put me on repeat. Maybe it's worth seeing a consultant to see if they will vouch for your need? The GP surgeries tend to listen to them.

Also, just a comment on a post from earlier on - GI index might be a red herring for people with fully blown type 1 (i cant comment on that as im not insulin dependent) but GI index is massively massively important to slow-onset diabetics who are insulin deficient and still have some of their own insulin just not enough to deal with fast-releasing carbs....


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.

 

[Phil-Clements]

I am a T2 (diagnosed 2010) and was also put straight onto Metformin. To be honest I was quite glad to have something to work with as the effects of the high BG were getting quite serious (27+ at diagnosis) and the combination of meds, diet and exercise brought me back down to an HBA1C of around 7 within three months. It never occurred to ask to leave off the meds and give diet only a try. My BG is stable at around 5-6 now.

With the strips I too had a reluctance at the GP to prescribe these due to cost. They certainly wouldn't allow it for at least six months as they said that any results would be meaningless until my BG had settled, and as a T2 there was no huge benefit in testing as a healthy diet and maintaining exercise would keep everything in check. I did though get some on the grounds that I drive a lot for a living and whilst there is no requirement to inform the DVLA I should have the facility to test if I felt under the weather and was due to be driving for a long period. That was over two years ago, and in all honesty I have probably only used half of the strips because my BG has remained stable over that time, but it is useful to know for certain from time to time that my levels are OK.

 

[gwheads]

You can get most meters for free. Depending on which strips you want to use probably the cheapest, You may have to fill in a short survey but you will receive a free meter and 25 free strips. I have 5 meters only two of which I purchased due to their complexity and functions. Search "Free Glucose meters" and make your choice.

 

[diadeb]

Julie/Everyone, as stated earlier I have only been able to get 50 testing strips x 4 times a year and wrote a comprehensive letter to my GP. It took a while for him to get back to me as he was on holiday but the bottom line is that I can now have 50 strips per month on repeat prescription, so yeaaah. As I have been diagnosed for 5 years I feel that this amount of strips is enough as I already know what foods to avoid and will test fasting bloods and anything new to eat. Also as the NHS is in finacial dire straits, I would want to obtain only what I really need and not any excess. I also obtained a copy of the local "Guidelines for the Management of Self-Monitoring of Blood Glucose (SMBG) from the Clinical Commissioning Group, which states that "routine SMBG in patients with type 2 diabetes not being treated with insulin is not usually recommended. Gold Standard for blood glucose testing;HbA1c remains the test of choice in Type 2 diabetes". So all-in-all I feel that I have been quite lucky to be allowed 50 strips per month by my GP, regards, Deb

 

[connie104]

I live in Spain and type 2 on medication are only allowed one pot of 50 a year as they only think you need to test once a week.

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[ER880]

My doctor told me (type 2) that I only need to check my blood once a year! get that! Hospital say's I should check 3-5 times a day! Who is right?

 

[SimonClifford]

Let's see, diabetic specialist or medical generalist who's influenced by their own budget calculations now. It's a bit like asking if the estate agent or the architect knows how much to spend on a house is best, isn't it?


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