Have you been told not to test your blood sugars?

[desidiabulum]

You could make a new thread that contains the poll then use your super mod powers to copy the posts from this one to the new one. Of course it would be polite to ask desi if he minds.

However poll threads should have a health warning as historically they've ended in tears with many well meaning posters being banned for setting them up and posting on them.

Hi Xyzzy -- long time no see -- hope you're well. I'm grateful for any ideas people have about how they want to do this. Let's try and keep it friendly and positive though, people. Thanks.

 

[xyzzy]

Hi Xyzzy -- long time no see -- hope you're well. I'm grateful for any ideas people have about how they want to do this. Let's try and keep it friendly and positive though, people. Thanks.

I'm doing fine desi thanks and about to have to train a new gp and dsn as to why eat to your meter rocks because I've recently moved.

My opinion on the use a meter issue and controlled carb regimes remains the same which is we the successful t2 patients need to educate our local gp surgeries that it actually saves them money. Anything that allows the gp practice to keep more of the cash they are given for having us on their books will get wide adoption regardless of what the official top down policy is.

 

[Lamont D]

I support change.com,
Through the forum and diabetes UK. A joint petition on behalf of testing for T2 would at least be a start!
Have a PR exercise notifying the press and media and see where we end up.
Trying is better than sitting and suffering!
Over 100,000 emails are sent to diabetics, if they respond to the plea then the government will have to acknowledge the concern.
Just a thought!

I wasn't turned down for a meter but my wife was, but I was put on a restriction of a hundred a year till I discussed it with my GP!

 

[phoenix]

I think that Diabetes UK is very aware of restrictions. I think they are quite keen to raise awareness of the issue
They have been involved in 2 surveys in recent years
This is their 'advocacy pack' It includes the position statements from DUK for both T1 and T2 and some suggestions in it on people to contact to raise concerns
2013 http://www.diabetes.org.uk/Documents/Advocacy/test-strips-advocacy-pack-0613.pdf

I think this is a brief report on the more recent survey mentioned in the pack (about both T1 and T2, most of the examples are T1)
2013 http://www.diabetes.org.uk/Documents/Reports/access-test-strips-report-0813.pdf


This is a paper about quite a detailed earlier online survey. (2010) This was specifically aimed at T2s not using insulin

Self Monitoring of Blood Glucose - a survey of Diabetes UK members with type 2 diabetes who use SMBG http://wrap.warwick.ac.uk/50161/1/WRAP_Waugh_DUK SMBG survey.pdf

 

[anna29]

QUOTE="IanD, post: 665720, member: 6186"]You are wrong, Sid. How often do newcomers arrive with that sort of question. DUK themselves advise & encourage testing. We are all in touch with health professionals, some of whom reject that advice because they know the value of testing, & the improved control it affords.

Rather than the having the problem reported on countless threads, it could focus on one thread the many who have experienced such bad advice.

Compare the poll on statin problems, which resulted in 60% of contributors suffering & giving up on the drug.

Can we convert this thread into a poll?[/QUOTE]

Polls from a forum don't get into downing street - only petitions signed by the people of UK do .
We have tried petitions in the past and sadly didn't accrue enough signatures to warrant
it being/getting debated inside NO.10 .

We really should have just 2 threads running here . (Then we can all compare between the two)
1. For the persons who have experienced difficulty in getting a blood glucose testing meter/strips on the NHS.
2, For the persons who haven't had any difficulty in getting a blood glucose testing meter/strips on the NHS .

Any petitions succeeding in getting cabinet debate time inside NO.10 can take positive steps to change
things for the better for us all .
Any change's from the government can/will affect all GP and DSN and clinics .
It is here - we need to influence and encourage the changes .

To ask - who has or hasn't been told to test their blood sugars isn't key to making a change happen
for the better . Its more a lack of supply of meter/strips to demand/need issue thing happening .
Some GP/DSN/CLINICS are cash strapped hence their advice being what it is - "you don't need to test"
mantra with some HCP's .

 

[desidiabulum]

Many thanks to Phoenix for posting links to what are the crucial documents on this one. I must admit that I was unaware of the 2013 survey and report, which makes very interesting reading. The DUK position statement makes perfect sense, and shows a strong awareness of the problem (as Phoenix says), and the opposition to a blanket policy on provision is surely right. My worry would be that it is nearly impossible to have a way of monitoring whether a blanket policy of non-provision is being imposed or not. The part of the survey dealing with reasons given patients for not supplying them is very striking --
34% due to cost saving measures.
30% were told they were testing too much.
24% were told this was due to PCT (now Clinical Commissioning Group), NHS boards or local health board guidelines.
19% of respondents to the survey were given no reason for their test strips being restricted.
'
'The reasons that people were given for restricting test strips were wide ranging and in many cases not true such as "If it were up to me I would give you them, but the PCT says I can’t" and "There’s no evidence to suggest that regular testing is effective"; "It’s illegal"; "NHS is phasing out issuing test strips". '
The points that forum members report being told -- that it will make them anxious or depressed -- seem to derive in part from the 2010 survey that Phoenix helpfully posted. This is the really misleading one, in a way -- '
Whilst only 16.1% reported having concerns/worries about SMBG on the questionnaire, the results from the free text questions was much
higher, i.e. 27.3% (n=135) of participants (out of the 495 who provided a response) reported anxiety and worry associated with blood glucose levels not being what they expected them to be.' Of course people feel worry or anxiety if their levels aren't what they should be -- I would have thought that was what testing is for!

Thanks for your response, Anna -- I do see your point. But I am trying to do something a bit different here. The test-strips/funding issue is a big one that I don't think we can do a lot about here. I am trying to focus on the point of people being told not to test. DUK is clear that this is wrong, that people are told things that simply aren't true. 'Cost saving measures' may not be reassuring but is at least true. Saying 'you don't need to test', 'it's bad for you', 'it doesn't work', 'it hurts', 'it makes you depressed' -- are not just untrue, but they disincentivize the patient and undermine BG control. Being told that there is a cost issue but no more at least means that patients who feel they can afford it could make at least short-term use of test strips and learn to control their diabetes. Those who can't afford it could at least be referred to the DUK advocacy pack. To tell patients that testing is unnecessary, doesn't work or is bad for them is simply immoral, it seems to me. What I want to do is to try to urge DUK to push this particular element more strongly -- that there should be an agreed answer given to newly-diagnosed patients on the issue of testing, and that giving false information should be specifically targeted and condemned by the NHS.

 

[zand]

This is slightly moving away from topic, but not too far I hope. I have never been told not to test, but I haven't been encouraged to test either. When I went to my GP to ask for metformin I told him I had been testing and he wrote down the fasting figure for that morning. A couple of months later I was rushed into hospital with chest pains and was chastised by the senior nurse for not having tested that day. She said "You are diabetic, you should test regularly". I explained that I had had to buy my own meter so I didn't think it mattered if I forgot occasionally, since they never told me to test in the first place. She was still critical of me even though when she tested me there and then my BG was 5.9 (about an hour after eating)

 

[nigelho]

I worked hard to get my own Blood Glucose levels down and under control only to be told that I needn't bother to test anymore and that the test strips would not be available to me (I'm Type 2) on the NHS.
Unfortunately they are far to expensive to buy outright so I'm simply forced by the NHS to give up testing altogether.
The irony of this policy is that careful B/G monitoring saves the NHS money in the long term and if I were to let thing go out of control I would get my FREE B/G test strips and cost the NHS much more.
Seems to me like the lunatics have finally taken over the Asylum.

I believe there are meters out there which use test strips costing less than £10.00 for 50. There is a type 2 bulk buy package for meters and strips on the diabetes UK facebook site.

 

[IanD]

I was encouraged to test from diagnosis - I bought my own meter - & have since been prescribed all the test strips I have requested.

At a 1-day XPERT refresher course, most participants did not test, (Hounslow PCT don't approve prescribing test strips on grounds of cost) & one had asked, & been assured that he should not worry - we will test you regularly. He had a heart condition as well as diabetes. It transpired that "regularly" was annually!!

 

[Bluetit1802]

From what I can gather reading posts from the luckier type 2's that are given meters and strips on prescription, many (most) seem to be told to test once or twice a day, or a few times a week, maybe just morning fasting and before dinner (no mention of before dinner + after dinner).

It seems to me the nurses/doctors have not grasped the importance of newly diagnosed testing out their reactions to foods (before and after each meal). They seem to think that just keeping an eye on general levels occasionally is sufficient. When I told my nurse I had learnt how to restrict my carbs portion-wise by testing each meal she looked genuinely amazed - this had never occurred to her as a possibility.

 

[IanD]

From what I can gather reading posts from the luckier type 2's that are given meters and strips on prescription, many (most) seem to be told to test once or twice a day, or a few times a week, maybe just morning fasting and before dinner (no mention of before dinner + after dinner).

It seems to me the nurses/doctors have not grasped the importance of newly diagnosed testing out their reactions to foods (before and after each meal). They seem to think that just keeping an eye on general levels occasionally is sufficient. When I told my nurse I had learnt how to restrict my carbs portion-wise by testing each meal she looked genuinely amazed - this had never occurred to her as a possibility.

I point "they" made against testing was, "What will you do with your BG readings - you can't make spot adjustments to your medication." That, of course, applies to occasional spot tests, which with well controlled T2 will stil range from 4 to 9.

There are many informed answers for T2s on diet only or tablets, e.g.:

readings above 12 call for adjustment to diet &/or medication
readings 9-12 require adjustment to diet;
readings below 5 require food;
readings between 5 & 8 are OK.​

Time of measurement in relation to meals will have a bearing, & only regular testing, before & after meals will give a true picture, & enable satisfactory control.

After, say 1 month's testing 3-6 times a day we get a clear picture & can reduce testing. I always test after overnight fasting, & occasionally up to about 6 times. I don't trouble the Dr apart from 6-monthly blood tests, so presumably my test strips ARE cost effective.

Occasional more frequent measurements are also informative - the DUK recommendation to test 2 hours after a meal allows the spike to reduce. When I tested porridge, the 2 hour reading was 9, but 1 hour was an unacceptable 14. The DUK recommended Fruit & Fibre gave 14 after 1 hour, about 6 after 2 hours, & 4.5 after 3, & I needed elevenses. So much for high carb, low fat being sustaining. I'll keep eating my nut porridge - or bacon & egg which used to be the standard, recommended b'fast.

 

[Sid Bonkers]

You are wrong, Sid. How often do newcomers arrive with that sort of question. DUK themselves advise & encourage testing. We are all in touch with health professionals, some of whom reject that advice because they know the value of testing, & the improved control it affords.

Rather than the having the problem reported on countless threads, it could focus on one thread the many who have experienced such bad advice.

I still see it as a pointless thread that will achieve nothing just like every petition that has been submitted and there have been many as you well know and they have achieved what? Zilcth!!

To my mind the only point of this thread is to knock the NHS and or NICE as so many other threads do here.

I wonder how many people do get free test strips, I know I do, perhaps a thread listing all those GP's who do prescribe test strips would be a more positive thread. But there seems to be fewer and fewer positive members posting here any more. Probably due in part to negative lets knock the NHS threads like this one.

 

[Sid Bonkers]

I support change.com,
Through the forum and diabetes UK. A joint petition on behalf of testing for T2 would at least be a start!

There have been many one even started by the admin on this forum, they have achieved nothing but if you want to waste your time then feel free to set one up I will even sign it but IMHO you are better off achieving a good working relationship with your GP one were you can show her/him what can be achieved by testing.

And lets say this as well those very low carbers who claim to eat under 30g of carbs a day, why do they need free test strips, its not as though they can adjust their diet as they are already eating the minimum it is possible to survive on.

When I joined this forum I was told/shown how to test to adjust the levels of carbs in my diet by carefully reducing the portion sizes of carbs and testing each meal, It worked well for me and allowed me to come off insulin and lose over 4 stone in weight. But if you are just going to cut out all obvious carbs then I see absolutely no point in testing your blood sugars regularly (finger prick) other than having regular HbA1c's to show if you need any/further medication.

 

[Sid Bonkers]

QUOTE="IanD, post: 665720, member: 6186"]You are wrong, Sid. How often do newcomers arrive with that sort of question. DUK themselves advise & encourage testing.

I am not saying its wrong to tell members not to test providing they are shown how to test to best advantage.

I am saying it is wrong to make a list of GPs who refuse test strips, its negative and it achieves nothing. I would rather inform people that they are better off developing a good relationship with their doctors which is the best way to get free test strips. Slating them for denying them and being aggressive gets nobody anywhere.

 

[Sid Bonkers]

I point "they" made against testing was, "What will you do with your BG readings - you can't make spot adjustments to your medication." That, of course, applies to occasional spot tests,

That is my point exactly Ian unless you are testing before and 2 hours after meals with the sole purpose of adjusting the portion sizes of carbs there is no point in testing at all. Testing once or twice a day achieves nothing.

I get free test strips but I dont abuse them now I have good control I only use a couple of packs a year now as I know what I can and can not eat and have achieved everything I set out to achieve by testing regularly, now I test a random 2 or 3 meals every month just to keep on eye on things

 

[IanD]

Sid: "To my mind the only point of this thread is to knock the NHS and or NICE as so many other threads do here."

No, Sid - what such threads achieve is sharing & airing a common problem, & constructive advice & result control of their condition. And DUK has been quoted with approval!!

[You posted more while I was writing.]

 

[anna29]

Lists of GP's/DSN's who don't issue meters/strips isn't a positive move to change things .
Collective petitions in huge numbers from persons can change things in the long haul .
This is how changes to laws happens !

Fixed rules with strapped budgets within the NHS are harder a boundary to change .
Within the forum - some members will be much luckier than others on this current topic .

Those who keep lower BG ranges appear to be hit more with this type of advice .
For others with escalating/erratic , or trough/peak , BG levels needing meds/insulin appear
to have more success in HCP's promotive advice of check and testing BG levels and supply of blood sugar
meters and test strips.

Maybe the HCP's are prioritising those who are with better controlled BG ranges than those
who aren't as well controlled ?
Worth a thought ?

Some areas are harder hit than others with lack of budget resources 'fact' .
So no amount of arguing,demanding,asking repeatedly can/will change this sadly !
The advice from the HCP's will reflect this matter also .
The healthcare teams of DSN,GP's will have been told to prioritise most likely .

There are changes all over the NHS and many restructurising schemes happening .
The podiatry teams within NHS are currently experiencing this presently .
Some even losing their jobs and others being demoted to lower income pay .
After years of loyal service too .


.

 

[Scandichic]

I am not saying its wrong to tell members not to test providing they are shown how to test to best advantage.

I am saying it is wrong to make a list of GPs who refuse test strips, its negative and it achieves nothing. I would rather inform people that they are better off developing a good relationship with their doctors which is the best way to get free test strips. Slating them for denying them and being aggressive gets nobody anywhere.

I think th slating comes from the frustration. I know I have slated my DNS for this reason. You see, I do think that there is more than one way to manage diabetes but my nurse is unprepared to accept that but the physical evidence that through my diet I have more than halved my bs levels and lost almost 4 stone in weight cannot be denied.
The only reason I ate lchf in the first place was because I had questions which the DNS couldn't or wouldn't answer. If someone is newly diagnosed and they ask several questions to which your response is you need to eat more carbs then you cannot expect them to be anything but bewildered and shocked at the lack of professionalism.
I wanted to have an open dialogue with mine. I wanted the rationale behind the eat well plate. I took my diagnosis very seriously. I had a food diary. I was told that it was a progressive disease, there was nothing I could do apart from take the meds , that there was no point in testing as I wouldn't understand the results and that I would become obsessive and that she wouldn't give me a meter. She even told me that there was little point in seeing her again and that I would be referred on to the hospital.
I have had no support from her whatsoever or my initial doc. I now see a different one and there is a whole wealth of difference.
My point is this, if I were not an intelligent, tenacious woman with an enquiring mind I would probably have experienced this "progressive" disease. As it happens I've reduced my weight, medication and blood sugars.
In an ideal world, we would have someone who we could have a good, professional relationship. However, I think that it's important that newbies do see this thread so that if they do have an unhelpful doctor/DNS then they realise that they are not alone and that there are alternatives.

 

[Clivethedrive]

Did you guys check my post re nhs test strips it's encouraging , my chemist helped find a doctor who's better informed and gave me my test strips prescription

 

[anna29]

What amazes me - is given the scale of diabetics within the UK
Millions numbers scale - petition size wise - it surely is achievable ?
To make a sure debate within No.10 cabinet table .

Change enough to ensure all HCP's are re-educated and budget's raised too
within the NHS to meet needs of all diabetics regardless of types or the
system set .
It clearly isn't the same for all - is it ? Nope !
System currently set - steers the HCP's to start at top of list as per
therapy to be with all newly diagnosed .
As in diet/exercise firstly then metformin then others meds/means to
lower the BG levels . (some getting the advice to test their BG levels whilst
others don't get this 'sigh' )
All newly diagnosed get placed within a system in most clinics/hospitals/GP's
surgeries .
To me - its the twin effect of the mixed up education/advice coming from the HCP's
and the lack of same rule/priority for all .
Hence how/why some persons are more or less luckier than others within the
current system !