Test Strips - Complaint Response from the Dept of Health

[Tinmis]

Interesting debate, I came across it as I wanted to find out if members felt the meters were accurate. As a T2 diagnosed in Aug 14 I have found this site and advice invaluable. As for testing, nothing mentioned at diagnosis, but I read up and decided to "invest in myself" (picking up on earlier contributions, I don't do sky and had just stopped drinking several pints a day and buy an accu chek meter and do some testing, more out of curiosity to see if my actions were doing any good. My first meeting with DN was for info only, and I was already ahead of the curve but found a fairly dismissive attitude to BG testing. I have been for the Hba1c test today so will know more next week. My point, I ran out of strips over Xmas and the order came through today, so decided to test after my long walk to visit to the DN. the reading was 8.5 which I felt high for what I had eaten, retested on another finger, 6.9, retested agin another finger and hand, 7.1, retested tonight before dinner 5.7. The meter does give me some peace of mind, but really how can I rely on this type of evidence. Now await my Hba1c result to gain some direction. I agree diet and eduction advice needs massively improving, so much contradiction out there. Thanks to all, makes a difference.

 

[Ian DP]

Nice guidelines for test strips on prescription for T2 state ***only as an integral part of his or her self-management education****

Patients keeping their BG levels lower through managing their BG levels with test strips is saving the NHS long term millions of pounds (through reducing complications requiring surgery).

 

[donnellysdogs]

Interesting debate, I came across it as I wanted to find out if members felt the meters were accurate. As a T2 diagnosed in Aug 14 I have found this site and advice invaluable. As for testing, nothing mentioned at diagnosis, but I read up and decided to "invest in myself" (picking up on earlier contributions, I don't do sky and had just stopped drinking several pints a day and buy an accu chek meter and do some testing, more out of curiosity to see if my actions were doing any good. My first meeting with DN was for info only, and I was already ahead of the curve but found a fairly dismissive attitude to BG testing. I have been for the Hba1c test today so will know more next week. My point, I ran out of strips over Xmas and the order came through today, so decided to test after my long walk to visit to the DN. the reading was 8.5 which I felt high for what I had eaten, retested on another finger, 6.9, retested agin another finger and hand, 7.1, retested tonight before dinner 5.7. The meter does give me some peace of mind, but really how can I rely on this type of evidence. Now await my Hba1c result to gain some direction. I agree diet and eduction advice needs massively improving, so much contradiction out there. Thanks to all, makes a difference.

Meters are a guide only and are allowed pretty high levels of inaccuracy (20% I think). If you tested your blood at the same time as having a fasting blood test done you would have a comparison to make to the blood actually being drawn out of your arm compared to your meter.

Strip are hugy beneficial as a gueline as the majority of all diabetics under use (not prescribed or in T1's case they may not do as many as they should etc) do not achieve the required hba1c's that the guidelines for the nhs have.

In my opinion only, if strips were given to people that wanted them to manage their diabetes..then this itself could reduce complications for those people....

I hear about emergencys in A&e on todays news and wonder how many diabetics are clogging up A&E because of hypo's/hypers and complications from not getting strips. The news worries about drunks in A&E.. I wonder about the diabetics that shouldn't be there if they'd been given the knowledge and tools to look after themselves..

Rant over..

 

[Minnie45]

I'm a T1 and on an insulin pump, I test before/after meals, before bed, as instructed by my DSN, also before driving in line with DVLA regs. Also when undertaking set changes, if I feel unwell etc. my strips have now been restricted to 100 a month. If I keep to this I will have no idea what my bloods are doing, not able to bolus etc etc. A very dangerous situation.

 

[tim2000s]

I'm a T1 and on an insulin pump, I test before/after meals, before bed, as instructed by my DSN, also before driving in line with DVLA regs. Also when undertaking set changes, if I feel unwell etc. my strips have now been restricted to 100 a month. If I keep to this I will have no idea what my bloods are doing, not able to bolus etc etc. A very dangerous situation.

I would suggest that you push back on that with your GP, very hard. As a pump user that is fundamentally unacceptable. You could suggest that your GP surgery is guilty of medical negligence in this scenario and that if you end up in hospital as a result of their restriction, you will be suing them. I'm sure you will get the response you require.

 

[Minnie45]

Thanks Tim, I've got a Dr appointment set up to discuss. Never had this happen before and feeling uncomfortable as don't want to cause trouble at the surgery.

 

[phoenix]

Hi Minnie
Just in case you haven't seen them. Here is some info to help fuel your arguments. Hopefully not needed.
Most important
Letter from Dof H re strip provision and T1
https://www.gov.uk/government/uploa.../Safe-care-of-people-with-type-1-diabetes.pdf


DUK pack http://www.diabetes.org.uk/Documents/Advocacy/test-strips-advocacy-pack-0613.pdf

not sure how a UK GP would take this one but , the American Diabetes Association has issued their first evidenced based position statement for T1 and it says
Patients with type 1 diabetes should perform SMBG prior to meals and snacks, at a minimum, and at other
times, including postprandially to assess insulin-to-carbohydrate ratios; at bedtime; midsleep; prior to, during, and/or after exercise; when they suspect low blood glucose; after treating low blood glucose until they have restored normoglycemia; when correcting a high bloodglucose level; prior to critical tasks such as driving; and at more frequent intervals during illness or stress. (B)

Individuals with type 1 diabetes need to have unimpeded access to glucose test strips for blood glucose testing.
Regardless of age, individuals may require 10 or more strips daily to monitor for hypoglycemia, assess insulin needs prior to eating, and determine
if their blood glucose level is safe enough for overnight sleeping. (B)
http://care.diabetesjournals.org/content/early/2014/06/09/dc14-1140.full.pdf+html

evidence grade b is the second highest level from A-E .

 

[tim2000s]

Thanks Tim, I've got a Dr appointment set up to discuss. Never had this happen before and feeling uncomfortable as don't want to cause trouble at the surgery.

Never feel uncomfortable about causing trouble. As long as you have a very clear argument in mind, and you present it in a firm but polite fashion, you will have no problems.

 

[iHs]

@Minnie45, Tim is correct and I ended up doing the same thing as he has recommended you do too. As a pump user, you will need approx 250 strips per month to ensure that your bg levels are controlled with the settings you enter on the pump. Pumps go wrong at times so nothing is ever perfect and many GPs dont understand how pumps work anyway.

Try using your pump dsn to write to your GP first though as they will probably be able to diplomatically enable your teststrip entitlement to be increased.

In the meatime.....get yrself an SD meter and buy some teststrips yourself just for peace of mind

 

[AnnieC]

I agree that to cut the amount of strips for T1 people is very wrong as they really need to test.but if the NHS are cutting theirs then T2's have no chance in the forseeable future of getting test strips on prescription. We only see it from our point of view and the need for testing on the LCHF diet but I could not see the marjority of T2's in this country who are not on insulin and who have never heard of LCHF even wanting to get strips and test more as they would not see any point in doing it.
We are still the minority in this country when it comes to the LCHF diet and until the NHS.. if ever.. recognises it as a better way for T2's to eat nothing will change and they will continue to say T2's don't need to test

 

[Minnie45]

Thank you everyone, good news my DSN has sorted this out for me, I can now cancel my appointment and collect a new prescription

 

[Ollie88]

Are any members using the type 2 testing programme shown advertised on DUK's home page?

 

[hayu]

Hi folks
Been reading some of the replies on meters and strips and to me it seems that most of us or the largest percentage of us are all of one mind. Maybe if there are any medical preplr reading these replies should maybe sit up and take note.
Hayu

 

[Scouser58]

Hello to all, I have been reading comments on this subject for a while and I agree every diabetic either T1 or T2 should have access on free prescription to meters,lancets and testing strips, they are a fundamental part of the care and control of this condition,... which if not monitored carefully can bring many health problems which are totally life changing and then more nhs services would be needed, to which they could say...
Why didn't you test and control the condition better?...to which the 'patient' can only answer,..
.... they would not give me the meter and test strips to keep a check on things.....
It must be pointed out that not every T2 could afford the cost of buying these necessary items on their budget.......it must be mentioned that 'money does not grow on trees..you know'.....
I think that the first point of control and monitoring must be with the person directly, as they feel the changes and then when checked by the meters can take the necessary Vital action to correct the situation or get immediate medical help, the patient can control how must help is needed by having their finger on the 'pulse'.......
. and if T1 are having problems what they hell does the nhs want live people with control on their condition or hospitalised patients needing so much care to get them well and 'in control' again?
Why when the medications are free to obtain on prescription, do diabetics have to go through such major stress to get the means to controlling the medications effects, not enough? or too much?....
This situation does not make sense, when they are saying we must be more selective in the nhs services we use,.......we the diabetics do not want to have a trip to hospital either by car or ambulance when the condition goes completely out of control.....
No matter which oral drugs, injectable's or the feared insulin should have to worry about what the feelings are telling them,.... the right information, the right time, and the right reactions are the best way to have control.....

Why are you blind?....I am a diabetic.....why didn't you monitor your condition?... they would not give me the testing kit.. they said it was not needed..
Why have you lost your foot?....I am a diabetic.....why didn't you monitor your condition?....they would not give me the testing kit... they said it was not needed..
I have been fortunate in that I have have had meters, strips and lancets supplied ever since I was diagnosed back in about 2007, ish.

Every diabetic either T1 or T2 should be supplied with these necessary items of condition control, they want to stay as well and in control as possible, after all they want to keep their feet, eye sight, and feel things through feet and fingers,......The ones who keep saying NO to testing kits are not the ones who will lose the afore mentioned body parts/functions.....

 

[joey62]

I asked my diabetes nurse when i recently got a diagnosed about needing a monitor,i too was told no i didnt ,all i was told was that i would have a retina photo and do go to some sort of place about diet i think,i was given a booklet and metformin.To this day im none the wiser ,i havent been told what my glucose level is or what it should be ,im bought myself a monitor with test strips .plus extra lancets for £23.08 pence very good price.

 

[hayu]

Hi folks well it seems that found out that we are all on the same wavelength with regards to testing our blood and trying to maintain it to a manageable level. What a pity that some of the medical world do not
Seem to want to help us.
Hayu

 

[Keatek]

I felt ill and didn't know what was causing it, I just knew I wasn't happy. So I went to a doctor in our local surgery here, he wasn't my usual one and after ten minutes of talking he took nigh on a 'pint' of blood from me. (Ok it was a couple of test tubes, but I'm a man and therefor it was a pint!!)
About a week later I got a phone call from the surgery. The conversation went like this...
Me "hello"
Surgery "Hi there, this is abcd and I've been told to ring you to tell you that your blood tests are back and you have to see a nurse"
Me "Eh, ok? Can you tell me what it's about and why I've to see the nurse?"
Surgery "Emmmm No but it's the nurse who deals with the sugar...the diabetic nurse!"
Me "I'm sorry, the nurse with diabetes? Why would I need to see her?"
Surgery "Emmm you just do, it's not anything to worry about its to do with your test results...but she's on holiday for two weeks"
Me "I think you need to explain this to me, or find someone who can. You want me to see a nurse who has diabetes and she's on holiday for two weeks?"
Surgery "Yes, I mean no.... Hang on..."
Two minutes later
surgery "you have to see the diabetes nurse because your blood has sugar in it. But! The nurse you need to see is on holiday. So you have to come and see another nurse who will give you something to drink and you have to have blood taken again"
Me "Ok, to be clear? I have sugar in my blood? I need to drink something and get more blood taken, but I've not to see the diabetic nurse, but she's on holiday for two weeks?"
Surgery "emmmm yes."
Me "make me an appointment with my doctor now please....!"

So that was basically how I found out I was a type two diabetic. The office junior who rang me and hadn't understood what he was trying to get me to do and attend. The doctor was more help, but basically sloped his shoulders and said see the diabetic trained nurse.
I did see her and she was very nice, yet more blood was taken and I was asked to go back again. Which I did, and she said for the last three months my glucose levels were 6.9 so I didn't need to worry. I was then sent to the dietician who said my BMI was 1 kilo over and I should go on a diet, but not to worry because she didn't really see where I could lose it from. I suggested my head because it was about to explode.
I then went to two visits over a two week period to the diabetic nurse and she told me the pros and cons of what I needed to do.
Now if anyone has stuck with me so far.... You will see I've been moved from pillar to post, not really told anything useful. And I'm still feeling ill.
SO. Guns drawn and ammo at the ready!
I went back to the nurse and asked her for a meter and test strips. I didnt know if the diabetes was causing me to feel ill or if there was something else going on I had yet to have diagnosed.
I was told that under no uncertain terms was I ever going to get a meter and test strips. It was health board policy NOT to give type two's test kits because if the user saw an increase in BG then it would cause them to worry. I said it was the worry I already had that I was trying to sort out, am I feeling awful because of the diabetes or is it something else?
The response was "your not getting a test kit"
At this point I gave up. Diabetics who are type two are a pain in the NHS's back side. We are not really a problem just now and we just 'might' be one day.
I attended a diabetes type two course that was laid on by the NHS for the first time in Scotland, allegedly, it was a few hours over a few weeks. It was interesting but we could have done the course in an afternoon. All I got out of it was that eating healthily and exercise was the cure all.

So, in conclusion. And I know I've written 'war and peace' the type two diabetic version!
I bought my own tester, I check my blood when I feel grotty and if my sugars are high, then it's the **** I've eaten that's making me feel grotty!
If I feel fine, when I've checked, my BG levels are good. I still feel bad on occasions but these are, from what I can gather, are normal for type two's to feel. So instead of worrying and annoying the casualty department at the local hospital, I have started to relate what I've eaten or done to by BG level. It would have been so much simpler if this had been an option straight away.
I can't fault the diabetes nurse, she has perimeters to work under as does the dietician and I suppose even the wee woman who ran the course.
One thing I did do though was, when during the course a trainee nurse came to the class. She sat very quietly and I chose that particular time to go to town about not letting type two's test their own BG levels. The trainee nurse decided to defend the NHS corner by saying "but! We will know if your symptoms are because of the diabetes, so why would you worry??" My reply??
"So, I have to be carried into casualty on a stretcher from an ambulance before you will tell me that my sugars are through the floor or through the roof? When a ten second test will tell me and teach me when I need to eat a mars bar or take a trip to casualty! I can see why they employed you!"
She didn't say anything after that!

Thank you for bearing with me to the end, I always write to much but I hope I made some salient points as well as make you feel a bit better if you have had a rotten time with your diagnosis.
BG meters and test strips should be optional for all newly diagnosed diabetics, at the end of the day it's you who's going to pick up on the symptoms your feeling and whether you can do something about it.

 

[MidnightStar]

I also feel that meters and test strips should be given to ALL diabetics. I was only diagnosed in December last year and the Dr and diabetic nurse both said a meter wasn't needed. They went though how to use one on the DESMOND course I attended which was a pointless exercise as again they said they are not needed for Type 2's. I have bought my own one so I know where my levels are.

 

[brush-head]

I was diagnosed over 6 years ago. Am on metformin (recently increased from 2 per day to 4! My own fault have not been taking a lot of notice about my diet which is now changing - again). Last HBa1c was 7. Problem I experience is the conflicting information about diet. Low GI, carbohydrate counting (haven't seen an easily understood method of dealing with this thus far). When you ally that to the approach in 2 PCT's that have been responsible (150 miles apart) to testing, then I don't just become confused I get angry.
I've just signed up for the deal via DCUK for a monitor & a year's supply of strips. It just makes sense to keep some form of continuing record (other than twice a year) of your levels, which in turn can help you modify your diet. I'm hoping this help me get back down to a more reasonable level & will take great delight in telling my clinician how I got there. The two tier NHS is already here.

 

[joshuarobert]

@katiek
What I am not advocating is a blanket prescription of strips, rather for the offering of a competent package of education + enough strips to educate in correct eating habits.
what we have in some areas is a blanket ban plus LIES from theoretician HCPs (I saw how much Diabetes training my MBChB friends got!).

i know this blog is from jan almost 8 months ago while that person katiek kept on about how much diabetis was costing the nhs i think she or he should do people reseach i was told july2014 i was boarderline diabeic iwas given a lealet and sent away i did change a few things but i really didnt consider it ,as i have copd and afew other health probs i was at my gp often not once was i asked if i had made any changes due to the possibly of getting diabetes.well 4 weeks ago blood test was done gets a phone call got to go to see gp and nurse as i now have type2 i was put on metformin and have 4 appointments to see differnt people for diet/eyes feet been checked and iam going on a course all this may have been avoided had i getting the edcation that everyone wants to give me now then ..ithink people at risk should maybe sent on a course have follow up appointments and reguler blood tests and a concelling session to make sure they understand the risks and how importent it is to make changes before its to late.and i feel sure the numbers will drop. i sure that would save the nhs millions because it would be harf way to preventing this thing that seems to be getting out of control.iam now getting all the edcation and only wish i knew a year ago what i know now and maybe i would have changed a lot more then i did and yes i am going to get the test strips but i will most likely pay for them myself i now have to take control..