GP surgery says test strips too expensive!!!!

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rmn58

rmn58

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has anyone else ever had this experience? I am so angry!
I requested a prescription for a box of Aviva test strips for my son from our new GP surgery. He takes insulin 4 times daily and tests his sugars each time ( he's not very stable and can be as low as 1 without any side-effects). When I requested it through the local pharmacy, I asked for the repeat to be increased to two boxes as one box barely lasts two weeks.

On collection from the pharmacy, I was mortified to have a note read out to me, in the hearing of others around that I was to telephone someone at the GP surgery and/or make an appointment to see the Dr as we were requesting the test strips too soon, using too many and that they are very expensive! My son attends a young adult diabetic clinic regularly, there has never been any suggestion that he should cut down his tests in the day, and in fact we have had problems recently due to him NOT testing his sugars at lunch-time because he was embarrassed at his new college to do so!

I then had to have a stand up "argument" with the assistant or pharmacist that served me who told me this was correct and he didn't need to check his sugars so often, and did I realise how much they cost????? I pointed out that if he didn't check his sugars he wouldn't know how much insulin to take and was then in danger of having a hypo! Eventually she agreed that she was talking about type 2! All of this in full view of lots of other customers. I felt like I was trying to steal something ! How on earth can they suggest he is testing himself too often? Do they think he does because he enjoys it?!!!

Any one got any similar experience and/or advice?
 
Hi RMN58, sorry to hear about this, it all sounds very stressful. And how rude of the pharmacist to talk like that! Of course it makes sense for your son to test at least 4 times a day. Is he fairly newly diagnosed? When I first got diagnosed they only gave me one box of strips at a time, but I got it changed to 4 boxes, which is much better - saves me from setting up residence in the pharmacy! I had to change it through the GP though, then they issue a prescription for 4 boxes every time.

Could you try going to see a GP in person - change your GP if necessary, or try getting your son's DSN to ring the GP or write a letter? I think it's fairly widely acknowledged that Type 1s need to test frequently, although some type 2s do have difficulty. Just point out that yes, the strips are expensive, but far less expensive than treating your son in hospital for very high or low readings - which could happen if he is not allowed to test.

Good luck, let us know how you get on!
 
Right, have picked myself up off the floor and if I knew where your GP and pharmacist lived you would have to hold me back.

They are getting their bloody diabetes mixed up again. They are spouting rules about type 2 diabetes and not needing test strips etc.

There are NO RULES (sorry shouting) for type 1 diabetes. They can have as many test strips as they like. In my own personal view your son should be testing a whole lot more than just 4 times a day anyway especially if, as you say, his control is not good. The only way to see what is going on is testing.

My daughter, when she was on 4 injections, (she pumps now) she tested :

Waking up
Mid morning
Lunch time
Mid afternoon
Tea time
Bedtime (7pm she was 5 years old ish)
9pm
11.30 pm (my bedtime)
2.30 am (generally)

That was a normal good day. If she had hypos or hypers we tested more.

Now we are pumping we test pretty much the same actually.

They need to read the NICE guidelines so they can get acquainted with type 1 diabetes.

I am soooooo cross, I'm fit to bursting. You are very right, they cannot limit test strips for type 1 diabetes and don't let them tell you otherwise.

Have a look at www.childrenwithdiabetesuk.org Join the email list on the home page. Once you have done that, ask the same question or post the same message. You will then get better advice that what I have given you and maybe some literature or ideas to back it up.

😡
 
It really does annoy me when I hear pharmacists or receptionists giving out advice they aren't qualified to give out! The pharmacist doesn't know the details your son's medical history, so what do they know? They obviously were thinking of type 2s so embarrassed you (and themselves) for no reason.

Unfortunately alot of people have this problem. Mainly type 2s, but some type 1s aswell. I think you should make an appoinment to see the GP in person to get the amount you need. Maybe see the diabetes specialist first to get him to write your GP a note that you can take with you.

Here's one thread where people have talked about how many strips they get:

http://www.diabetessupport.co.uk/boards/showthread.php?t=3839

There are more threads where people have said they aren't given enough and have to get their prescriptions every couple of weeks, but I can't seem to find them.
 
Last edited:
I forgot to say that I get 8 boxes each time which is 400 test strips whenever I needs them.
 
lol Adrienne I knew you'd come in here with an amazing response. :D
 
That's disgusting! These people ought to realise that people who live with diabetes know an awful lot more about it than they do - whatever their qualifications. And suggesting that the expense should be considered is absolutely none of theor business!!! Grrr!!!

I originally was prescribed 100 strips but after a few weeks persuaded my doctor to allow me 200 per prescription. I'd rather it was 300, mind you! As you say, we don't get any pleasure from it, but we HAVE to do it to stay safe and well. I think a letter of complaint would be fully justified.
 
Adrienne said:
You know me so well.
Click to expand...

haha so modest aswell :D

Ive only just realised I'm still only getting 150 test strips myself and it really isn't enough, grr. The nearer to running out I get, the less I test and the worse my levels get. I really need to ask for more, but Ive already gone from 100 to 150 and that was difficult enough 🙄 But for some reason they've randomly started giving me 3 x Lantus boxes and I only need one! I guess that's because they know we actually HAVE to have insulin 😉 Back to the doctors I go... :(
 
Thank you so much for the support!!! I AM SSOOOOOO angry but wondered if it was just me lol Thing is we have just changed to this DR....this is the first I have requested test strips!!!!!!!! I feel like telling them to forget it, and find another new Dr!!!!!!!!! The person who sent the message doesn't appear to be a Dr either......so that makes me even MORE angry!!!!!!! Oh the telephone is going to be sooo hot tomorrow!!!!!!!1
Thanks for all the support :-D Makes feel so much better. And trust me, if th surgery HAD been open....I'd have been right down there!
 
katie said:
haha so modest aswell :D

Ive only just realised I'm still only getting 150 test strips myself and it really isn't enough, grr. The nearer to running out I get, the less I test and the worse my levels get. I really need to ask for more, but Ive already gone from 100 to 150 and that was difficult enough 🙄 But for some reason they've randomly started giving me 3 x Lantus boxes and I only need one! I guess that's because they know we actually HAVE to have insulin 😉 Back to the doctors I go... :(
Click to expand...

Good luck.

I have the same problem with my asthma. If it was only me then I would remember to get a replacement puffer. It is a preventative with numbered amounts of puffs 60 I think which lasts 30 days. As I have so much stuff to remember for Jessica I forget me and every month I have to blag a repeat script over the phone which they insist they can't do - yeh right ! They won't give me two months though ie two puffers. Their policy is one only.
 
Adrienne said:
Good luck.

I have the same problem with my asthma. If it was only me then I would remember to get a replacement puffer. It is a preventative with numbered amounts of puffs 60 I think which lasts 30 days. As I have so much stuff to remember for Jessica I forget me and every month I have to blag a repeat script over the phone which they insist they can't do - yeh right ! They won't give me two months though ie two puffers. Their policy is one only.
Click to expand...

Thanks! That's annoying! My friend (who smokes like a chimney) seems to have puffers all over his house. maybe he doesnt take it when he's supposed to, just after smoking alot?! who knows 🙄
 
I've got a prescription review appointment tomorrow morning, and I'm actually going in geared up for a fight, in case they try to tell me to use less strips! I use Asencia Contour strips, which I know are ?25.00 for 50 over the counter. I'm not sure what the cost of that is to the NHS - anyone know at all? I want to have all my facts really in case they try to shoot me down about how much I test.
 
katie said:
Thanks! That's annoying! My friend (who smokes like a chimney) seems to have puffers all over his house. maybe he doesnt take it when he's supposed to, just after smoking alot?! who knows 🙄
Click to expand...

My asthma came back because I smoked like a chimney. I gave up 5 years ago 2 days ago I think. I had asthma at about 13 years old then it sort of went. I started smoking at 15 and heavily smoked until I was 35. The smoking masks all these ailments you know. When you stop they appear which is why people go back to smoking but it doesn't stop the problems, they are just masked again but are still there creating havoc to your insides. So I put up with the asthma and don't smoke. I daren't as I would be back to it big time.
 
SacredHeart said:
I've got a prescription review appointment tomorrow morning, and I'm actually going in geared up for a fight, in case they try to tell me to use less strips! I use Asencia Contour strips, which I know are ?25.00 for 50 over the counter. I'm not sure what the cost of that is to the NHS - anyone know at all? I want to have all my facts really in case they try to shoot me down about how much I test.
Click to expand...

Hiya

The point is though that it doesn't matter how much they cost. This should not figure into it at all for you. For type 1 diabetes there is not rules, they need the test strips and that's that. If they say you test too much, then tell them to live your life a while and see if they can keep it under control by testing four times a day or however many. Tell them that you want to live and you want to live as long as you can and that means keeping your levels at the best possible levels that you can and that means lots of testing. If he argues that you will ruin your fingers, tell him you do your ear lobes as well or your arm (but only if you haven't eaten within the last two hours). Tell him you would rather lose the feeling in one finger than a year or so off your life. Lay on thick as it is the truth, they forget that bit, the emotional bit and just look at numbers and text books. You are not a text book !

Not sure whether I have helped or just ranted really 😱
 
Probably a bit of both, but that's more than ok! :D

You're totally right. I don't LIKE testing, and I don't use it as any sort of crutch, but how the heck are we supposed to get by without it? I couldn't wrap it round my head when my consultant suggested that twice a day might be enough for me, if I were to rotate the time of day! How on EARTH are you meant to see a pattern in that? I'm not even a year into this, I'm starting a new form of exercise (ballroom and latin dancing for anyone not reading my blog! 😉) and I need to know how that, and everything else is going to work for me.

Being straight down the line is probably the best option, as you say
 
Adrienne said:
My asthma came back because I smoked like a chimney. I gave up 5 years ago 2 days ago I think. I had asthma at about 13 years old then it sort of went. I started smoking at 15 and heavily smoked until I was 35. The smoking masks all these ailments you know. When you stop they appear which is why people go back to smoking but it doesn't stop the problems, they are just masked again but are still there creating havoc to your insides. So I put up with the asthma and don't smoke. I daren't as I would be back to it big time.
Click to expand...

I'm glad you dont smoke. My mum now smokes after giving it up for 24 years, just because her boyfriend smokes, urgh! Unfortunately I think my friend LIVES for smoking and drinking. He is also overweight. I don't think there's anything I could say to stop him. I should really give him a lecture about type2 diabetes 😉. Sorry for taking over the thread!
 
RMN sorry you're having problems getting the right number of blood glucose testing stips for your son. As he's attending young adults clinic and college, I'm guessing he's over 16 years? In that case, while parental support is very important, he also needs to start taking control of obtaining supplied etc - he'll need a medical exemption certificate, due to diabetes, once his age no longer gets him free prescriptions. The hospital clinic consultant or specialist nurse would probably be willing to write a letter supporting regular testing to your GP to ensure adequate supplies on prescription. Hope he doesn't smoke
?!?
 
rmn58 said:
has anyone else ever had this experience? I am so angry!
I requested a prescription for a box of Aviva test strips for my son from our new GP surgery. He takes insulin 4 times daily and tests his sugars each time ( he's not very stable and can be as low as 1 without any side-effects). When I requested it through the local pharmacy, I asked for the repeat to be increased to two boxes as one box barely lasts two weeks.

On collection from the pharmacy, I was mortified to have a note read out to me, in the hearing of others around that I was to telephone someone at the GP surgery and/or make an appointment to see the Dr as we were requesting the test strips too soon, using too many and that they are very expensive! My son attends a young adult diabetic clinic regularly, there has never been any suggestion that he should cut down his tests in the day, and in fact we have had problems recently due to him NOT testing his sugars at lunch-time because he was embarrassed at his new college to do so!

I then had to have a stand up "argument" with the assistant or pharmacist that served me who told me this was correct and he didn't need to check his sugars so often, and did I realise how much they cost????? I pointed out that if he didn't check his sugars he wouldn't know how much insulin to take and was then in danger of having a hypo! Eventually she agreed that she was talking about type 2! All of this in full view of lots of other customers. I felt like I was trying to steal something ! How on earth can they suggest he is testing himself too often? Do they think he does because he enjoys it?!!!

Any one got any similar experience and/or advice?
Click to expand...
Shortly after J was diagnosed I was told by a particularly unhelpful receptionist that the GP has a prescribing budget to consider and can't just give out whatever I wanted for my son!!!! I was very new to all this then, my god if she said it to me now I swear I would lump her one!!!!
I'm still only given 100 strips at a time, which I have to share out to school, home and J dad's home.
C.
 
Hi rmn58,
I have had the same experience as you and I am a type 1 diabetic. My GP practice refused to give me more than 1 box of test strips PER MONTH without me justifying why. When I explained that, at an absolute minimum, I tested each morning when I woke, before driving (which I did every day to work and back again) and each night before bed, that I needed more than fifty strips (one box), they still didn't budge. It turned out that the GP was trying to cut costs and test strips were too expensive!! I ended up putting in repeat prescriptions all the time and found that sometimes they were accepted (above the one box a month). That's how I survived for a while... But, my advice to you, if possible, is to move GP practices... I moved house and went to a new practice who don't restrict at all. If you're lucky enough to be in the area with more than one GP's that you could use, I'd recommend that!

I presume that your son is under a consultant too...? If that's the case, see if you can get your consultant, or diabetes nurse, to speak to the GP. The consultants seem more keen for more testing (which would kind of make sense as they are charged with getting good control out of you, whereas the GP is the one who needs to maintain their budget). Not sure if it will work but it might help...

Natalie
 
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