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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

to expect blood sugar sticks to be available on the NHS.

49 replies

cheshirekitty · 08/02/2009 14:47

As a diabetic I want to keep my toes and fingers for a fair few number of years.

Yet there are loads of us who are unable to get a prescription for testing strips from the NHS. (GP's refuse to prescribe them as they are too expensive).

The DVLA states that diabetics should test themselves before driving. If we do not, and have an accident we will be treated as a drunk driver.

So how are we to keep an eye on our blood sugars if we are not allowed test strips?

OP posts:

BONKERZ · 08/02/2009 22:15

mm22bys, i have never heard of the testing before driving thing. I know that the diabetic nurses have never mentioned it to him ever and DVLA certainly never mentioned it when he rang them to tell them of his DX. He was DX over 5 years ago now and has been very lucky to never have a hypo or hyper.
The new meter is not his idea, the chemist sorts out all DHs prescriptions etc and every year he is asked to give his old meter to the chemist and a new one is prescribed. He would happily stick with his old ones as he is rubbish with gadgetsbut as i said the chemist is linked to the surgery and controls DHs prescriptions.

BONKERZ · 08/02/2009 22:23

and just to say, now i have read this i have spoken to Dh who has an appointment on friday with the GP and has said he will ask about this. It is worrying but has never been mentioned or questioned! The diabetic nurse has told DH he only needs to take his sugar readings first thing in morning before his injection and then again only if he feels light headed, tired or nauseous. He has been following Gps advice.

tangarine · 08/02/2009 22:25

ds1 has type 1 and has never had any problems getting test strips in any quantity, but I know of other children who have. Apparently GPs were asked a while ago to limit the amount of sticks they prescribed to keep costs down, and people who test 7-10 times daily (like my ds) were being told they were limited to 100 strips/month. They do go out of date, so I can understand not wishing to overprescribe them to have them wasted, but OP, you have a clear need for them. Maybe you could write to the practice manager setting out your need? IME, doctors tend not to know or understand much about diabetes (T1 or 2), as your GP has shown.

tangarine · 08/02/2009 22:29

BONKERZ - your last post is exactly the point I was trying to make. My ds tests before every meal, so he knows how much insulin to take with the food at that meal, before any activity in case he needs a snack before he starts, and before bed to make sure his levels are safe. If he has a hypo he has to test again to make sure his levels have come back up. if he has extra insulin because he is high he has to test after an hour to see if he is coming down. Testing once a day tells your dp very little about his blood sugar control apart from what it's like first thing.

tangarine · 08/02/2009 22:32

PS BONKERZ I don't want to sound rude, but if your dp isn't testing he won't know if he's hyper or hypo. That might be why he's never had either in his five years since diagnosis. ds has a (often mild) hypo most days, and is often hyper when he tests 2 hours after breakfast. He sometimes doesn't notice if he's hypo or hyper, and we just pick it up by regular testing.

llareggub · 08/02/2009 22:34

I'm shocked at your post, OP. I've got gestational diabetes and have to test 4 times a day. I get my strips on prescription and was annoyed that I only get 50 in one go, when I've been prescribed so much insulin I'll never run out! I will be more grateful from now on, I think. I did ask at the chemist to see how much they were, just in case, and was told that they are £20 a box. So you a definitely not being unreasonable.

Off topic, my mother has been diagnosed with type 2 diabetes and is supposed to control it through diet, although her GP has told her that she'll be tested once a year. I don't get that. How is she supposed to know that her diet control is working?

sausagenmash · 09/02/2009 10:32

Cheshire, yes, I'd do some foot stamping! Write to your practice manager, and also contact Diabetes UK. Some GPs really wind me up!! Its all to do with cost at the end of the day, ggrrr! Its in the BNF, it should be prescribed, end of.

llareggub - sounds like the management of your Mum is completely naff too!! She should be checked more regularly than that! Check with Diabetes UK as well!

Its sad, but Type 2 is on the rise, and I really don't think healthcare professionals in primary care have a clue about how to manage it! I deal with a lot of children with Type 2 / insulin resistance, and its hard work, but we have to get so many people on board to MAKE it work....

Good luck everyone

bramblebooks · 09/02/2009 12:29

It took 3 months and a lot of foot stamping to get my dad, who has T2, to be sorted by his gp. He's now getting much better levels and is feeling well.

Bonkerzz - agree totally with the testing regime that tangarine uses for her son, we have the same sort of system for our boy.

tangarine · 09/02/2009 18:50

Sausagenmash, just out of interest, when you say "a lot of" children with T2, how many do you mean? A diabetes forum I am involved in was discussing the ratio of T1 to T2 children recently in the wake of the change for life campaign ont distinuishing between the two, and it would be interesting to hear your take (I assume you are a health practicioner). Thanks in advance .

mm22bys · 09/02/2009 19:28

I know they are more concerned about now costs rather than potential later costs, but strips are cheap compared to a limb amputation or dialysis....

The meters are cheap too, compared to the strips, I am shocked though that your DP Bonkers is forced to get a new one every year, now that is wasteful!

BONKERZ · 10/02/2009 10:20

i agree and we didnt change the first one for 2 years and it was working fine but have been told its essential, they also over pescribe his pens as they say he has to have new epipens every 6 months, we have tried to tell the chemist we dont need them but they turn up with the insulin!

MollieO · 10/02/2009 12:26

Why don't you get a NHS pre-payment certificate? I'm asthmatic and on three different meds a day plus frequent antibiotics. I'd spend more than that a month on meds if I didn't pre-pay. Has always seemed odd to me that insulin-dependent diabetics get meds free but asthmatics and others with chronic life-threatening conditions don't.

Original poster

cheshirekitty · 10/02/2009 16:09

You have missed the point, MollieO. My gp will not prescribe the blood sticks because he does not think they are necessary.

The DVLA states a diabetic must test themselves prior to driving a car to exclude hypo.

The reason diabetics get free prescriptions is to try and eliminate long term side effects which would cost the NHS even more in the long run ie amputation, sight loss, triple bypasses etc, etc. It is all about money.

OP posts:

mm22bys · 10/02/2009 16:37

Bonkerz, I have never ever ever (more than 10 years) had a meter prescribed. I have even paid for them, but the last one I got the hospital gave me because they told me it would be compatible with my pump. And it's great - I test, and the result is sent direct to my pump which suggests a correction bolus! I can override it however, so it's not automatic....

Original poster

cheshirekitty · 10/02/2009 16:43

My dh bought me my meter when I was first diagnosed. I think it was a valentines day pressie!!!

OP posts:

EightiesChick · 10/02/2009 16:54

Cheshirekitty, I sympathise, and YANBU, but MollieO also makes a great point. My DH gets his metformin for free, but I have to pay for my blood-thinning meds, which I'm on for life and which stop me having a life-threatening blood clot (which would cost the NHS a lot more to treat). The rationale for what conditions do and don't qualify for free prescriptions is all over the place. It goes without saying for me that no-one who currently has this benefit should lose it, but I think it should be extended to quite a few other things.

We should all be writing letters to our MPs, probably. Doubt practice managers can do anything, other than to nag the GP to agree to prescribe the strips. On that point, have you considered changing doctors to someone who WILL prescribe them? (making sure you tell your current GP that's why you're leaving of course...)

BONKERZ · 10/02/2009 17:42

we bought the first one ourselves.
mm22bys, i feel you are slightly aggressive towards me in your posts. I have purely stated what happens with my Dh! i dont agree with it all, ifeel the new meter every year is pointless but it happens even if we request it not too, the epipens are a pain cos we have so many here but are told to throw them away. DH has never been told to test more regular, he has been told to test first thing in morning and again if he feels light headed etc and he does test more often if he is poorly as this affects his levels. He follows all the advice from his diabetic nurse so i dont understand why you are being so aggressive towards me.
He has docs tomorrow for anti Ds and has agreed to chat to GP about how often to test etc.

OP what test strips do you use? DH has a huge amount here and maybe we could pass some to you instead of them going out of date. he uses one touch ultra

bramblebooks · 10/02/2009 18:34

Good luck tomorrow!

mm2bys, fascinated by your pump! I'm waiting for the animas ping to become available in the UK, along with cgms. We have an animas pump and it's the best thing to happen since this ruddy disease. We chose it due to tiny increments in basal and waterproofness - essential with a small boy! I really miss having the cgms option that my friends with medtronic pumps have, but hey ho, I hope for it soon.

mm22bys · 10/02/2009 18:40

Sorry Bonkerz. I have type 1 myself, and the reason why I am perhaps coming over so agressive is because your dh is clearly receiving sub-optimal care.

No type 1 who is receiving half-decent care would be told to only test once a day, he should be testing 4 - 6 times a day, if he has any chance of achieving half decent control.

He should be testing before he drives, even cheshirekitty, a type 2, has been given this advice.

Is he only seen by a GP, or is he also receiving care by a consultant (endocrinologist). GPs generally know bugger all about diabetes, especially type 1, it is a very complex condition.

How many times a day does he inject? If he's not on multiple daily injections, or a pump, he needs to have his regimen updated, which would mean him having to test more.

Sorry for appearing so "aggressive", but I am passionate about this, and do actually only hvae your DH's best interests at heart.

sausagenmash · 10/02/2009 18:41

Hello tangarine - you're right, I'm a nurse. In our hospital, Type 1 diabetic children are seen in their own once a week clinic, which I am not involved in - I'd say there must be 20 or so on that clinic list. The clinic I'm involved in is with children with other hormone problems. We have around 25 - 30 children on the list each week, and I'd say usually around 5 or so have insulin resistance, acanthosis, on metformin, needing dietary regulations... etc... if they haven't already got type 2, if their lifestyles don't change, they soon will do. With the majority, type 2 also runs in their families. Sorry I haven't got any hard figures, but I hope that helps

mm22bys · 10/02/2009 18:44

Bramblehooks, I have a Medtronic Paradigm and it has a bolus wizard. You set your insulin to carb ratio, how much one unit of insulin drops you, how many carbs you're eating, and your current bg, and it works out how much active insulin you have in you, and any correction that is necesssary.

It is hard work though getting all the ratios right.

I haven't used a CGMS but know they are far from perfect yet as they have big calibration problems.

BONKERZ · 10/02/2009 18:55

i understand you passion mm22bys, he is my DH and i worry about him alot!
Dh sees a diabetic nurse at his GPs surgery every 6 months. He was dx 5 years ago now and for the first 6 months was seen weekly but since then he is seen once every 6 months. he injects twice a day, before breakfast and before tea. he is not on a pump.

mm22bys · 10/02/2009 19:00

Fair enough. All the best to him...(and you....)

bramblebooks · 10/02/2009 19:19

mm22bys similar system on the animas. We've been doing some carb=free basal testing at the weekends - the following weekend that helps us to get the ratios in for meals. Of course, that all goes by the board during the week as his weekday programme is different as his insulin needs are much less. It's the best treatment for now though.

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