Type 2 Practice nurse said not to test

Bluetit1802 · Sep 11, 2017

Diabeticliberty said:
With the greatest of respect why the hell are you paying for your own test strips? If you tell them that the results that testing provide you with enables to make adjustments to your dietary regime which gives you better diabetic control which in turn gives you a better chance of a decent long term outcome and avoids them having to fund treatment for expensive diabetic complications then they should cave in and prescribe for you. If they refuse then tell them that you require this decision in writing with clear clinical reasons for their shortsighted refusal. Tell them that you require evidence because you intend to contact your local CCG directly and appeal their decision and lodge a formal complaint for the amateurish way that they are treating your chronic condition with potentially dangerous long term complications if your condition is poorly managed. I am type 1 ahd my own GP and DSN attempted to reduce my own test strips and failed after I challenged them. I have a very good friend who is type 2 and they refused test strips for her. She challenged them and they immediately caved in to her request. It is a sorry state of affairs but my own GP pretty much admitted that they feel that most diabetics don't have the motivation or lack the tenacity to mount a credible complaint against test strip refusal. I can provide you with a template letter to enable you to start the process if you so wish.

If your GP or practice time nurse make a ropey decision then for them it is a bad day at the office. For you it can be potentially life restricting. You should not feel in the slightest deflated for wanting to take control of your own condition. I commend you for it.

Type 2s have very little chance of having meters and strips on prescription except in certain circumstances. It is no use blaming the GP surgery. They just follow orders.

For Type 2s, this is what NICE says:

Self-monitoring of blood glucose
1.6.12 Take the Driver and Vehicle Licensing Agency (DVLA) At a glance guide to the current medical standards of fitness to drive into account when offering self‑monitoring of blood glucose levels for adults with type 2 diabetes. [new 2015]

1.6.13 Do not routinely offer self-monitoring of blood glucose levels for adults with type 2 diabetes unless:

the person is on insulin or
there is evidence of hypoglycaemic episodes or
the person is on oral medication that may increase their risk of hypoglycaemia while driving or operating machinery or
the person is pregnant, or is planning to become pregnant. For more information, see the NICE guideline on diabetes in pregnancy. [new 2015]

1.6.14 Consider short-term self-monitoring of blood glucose levels in adults with type 2 diabetes (and review treatment as necessary):

when starting treatment with oral or intravenous corticosteroids or
to confirm suspected hypoglycaemia. [new 2015]

1.6.15Be aware that adults with type 2 diabetes who have acute intercurrent illness are at risk of worsening hyperglycaemia. Review treatment as necessary. [new 2015]

1.6.16 If adults with type 2 diabetes are self‑monitoring their blood glucose levels, carry out a structured assessment at least annually. The assessment should include:

the person's self-monitoring skills
the quality and frequency of testing
checking that the person knows how to interpret the blood glucose results and what action to take
the impact on the person's quality of life
the continued benefit to the person
the equipment used. [2015]

Diabeticliberty · Sep 12, 2017

With the greatest of respect I was and am fully aware of what the NIHCE Guidelines state. They are however purely guidelines. We have mounted challenges and assisted other type 1 and type 2 diabetics to mount challenges which have overturned decisions to routinely refuse testing equipment. I do directly blame GP's because they enter into a Contract with the Secretary Of State For Health to provide patients in their care with appropriate medical advice and equipment to best manage their own conditions. Refusing testing equipment does in fact, at least in my own opinion put them in breach of this Contract.The guidelines as you have quoted do suggest not to routinely offer test equipment to type 2 diabetics not taking medication likely to induce hypoglycemia. They do NOT suggest routinely refusing testing equipment. Each request for equipment should be assessed on a case by case basis. If proof can be offered that self testing has a positive direct effect on any type 2 diabetics lifestyle then GP's are in fact provided latitude to prescribe testing strips. This is why some type 2's do actually receive them on prescription. In short if a type 2 tests and does nothing about the results they are highly unlikely to continue receiving test equipment on prescription. If however as a result of testing they change aspects of their lifestyle and diet their GP may support them with further means to do so and quite rightly so in my opinion. Some hide behind or misquote guidelines. If you challenge them however you do have a chance of nudging them toward a Damascus moment. The direct cost of a foot amputation which can be associated with poor diabetic control is around about £25,000.00 tag onto the end of this the on cost of associated after care on a year on year basis and your GP will start to perspire at the prospect of what this will potentially cost them. If you then point out the trade off in terms of how many years testing equipment this will fund rather miraculously they tend to remove their blinkers.
On a semi related matter which is close to own heart there appears to be a growing opinion among a number of type 1's that the Freestyle Libre system should be offered to type 1's on prescription. This opinion usually makes me terribly unpopular with my own type 1 peers but I personally feel it morally bankrupt for type 1's to expect this while type 2's are expected to self fund. This however is a different debate for a different thread to this one.

Mike d · Sep 12, 2017

@bluetit suggested nothing of the sort. Read it again. An ambassador for those with this condition, I've lost count of the number of times when she's taken GPs and nurses (and NICE) to task. Completely unfair. Talk to your politicians, but not to a DCUK expert who deserves a lot more respect without simply shooting the messenger

badcat · Sep 12, 2017

Diabeticliberty said:
With the greatest of respect I was and am fully aware of what the NIHCE Guidelines state. They are however purely guidelines. We have mounted challenges and assisted other type 1 and type 2 diabetics to mount challenges which have overturned decisions to routinely refuse testing equipment. I do directly blame GP's because they enter into a Contract with the Secretary Of State For Health to provide patients in their care with appropriate medical advice and equipment to best manage their own conditions. Refusing testing equipment does in fact, at least in my own opinion put them in breach of this Contract.The guidelines as you have quoted do suggest not to routinely offer test equipment to type 2 diabetics not taking medication likely to induce hypoglycemia. They do NOT suggest routinely refusing testing equipment. Each request for equipment should be assessed on a case by case basis. If proof can be offered that self testing has a positive direct effect on any type 2 diabetics lifestyle then GP's are in fact provided latitude to prescribe testing strips. This is why some type 2's do actually receive them on prescription. In short if a type 2 tests and does nothing about the results they are highly unlikely to continue receiving test equipment on prescription. If however as a result of testing they change aspects of their lifestyle and diet their GP may support them with further means to do so and quite rightly so in my opinion. Some hide behind or misquote guidelines. If you challenge them however you do have a chance of nudging them toward a Damascus moment. The direct cost of a foot amputation which can be associated with poor diabetic control is around about £25,000.00 tag onto the end of this the on cost of associated after care on a year on year basis and your GP will start to perspire at the prospect of what this will potentially cost them. If you then point out the trade off in terms of how many years testing equipment this will fund rather miraculously they tend to remove their blinkers.
On a semi related matter which is close to own heart there appears to be a growing opinion among a number of type 1's that the Freestyle Libre system should be offered to type 1's on prescription. This opinion usually makes me terribly unpopular with my own type 1 peers but I personally feel it morally bankrupt for type 1's to expect this while type 2's are expected to self fund. This however is a different debate for a different thread to this one.

Well said
The other arguement that may well hold sway with gp practices in relation to T2 at least is the overall and relative costs of medications - using testing and dietary change is an obvious first step which has assosciated costs in terms of test strips which can be offset against the costs of medication if diabetes remains uncontrolled and progresses to requiring meds
If / when diabetes is at a stage where meds are needed, first line meds ( metformin and sulfonylureas such as Glic) are much much cheaper than the newer medications ( on a side note, Metformin MR is also much more expensive than ' normal' metformin which is why it is only prescribed once people have shown bad reactions to 'normal' metformin)
If self testing is used well, then progression of diabetes can be slowed / stopped as will the increased monetary costs to the nhs and personal cost to patients of requiring multiple medications to get / regain glycemic control.
Sadly the logic of pre investing in order to save money in the long term has escaped much of the NHS
You can google the cost of dfferent medications by name for up to date costs. Page 3 onwards of this document includes the monthly prescribing costs of different meds in T2. I think there would be similar documents showing costs of different types / combinations of insulin
https://www.surreyandsussex.nhs.uk/...CG-Type-2-Diabetes-Prescribing-Guidelines.pdf

Element137 · Sep 12, 2017

Liam8668 said:
I had a routine appt for my blood pressure checked this morning and mentioned about testing my sugars and them not being under 10 for the last 2/3 weeks. I felt like a naughty school child , she said to me I don't understand why you feel the need to test only type 1s should be testing. I did tell her I will keep checking to which she said well that's your choice. I was then told to up my metformin to 3 per day and eventually going up to 4 per day.

Apparently because it's not been 3 months since my last set of tests she wasn't willing to take them.

I just felt very deflated when I came out because it's like I'm not being taken seriously if that makes sense.

I am going to continue testing regardless of what she says as it's me that pays for the strips not them.

You could try asking her if she drives ?- if she does, how does she follow speed limits on the road ?- Does she :
A) look at the speedometer every few seconds/minutes to measure her speed, and then continuously adjusts her inputs on the brakes/accelerator ?- therefore maintaining a desired speed.?
OR
B) Looks at the speedometer once every 12 weeks and hopes that somehow she achieves the required speed in all the time inbetween ?
Without measurement how can you measure control ? - my first doc told me not to test also - ignore it - you know what to do.

busydiabeticmum · Sep 12, 2017

What I have noticed is that the nhs (from different areas) do hand out meters (to those who they think need it) however the testing strips are EXTREMELY expensive. The accuchek strips are over £30 per 50. I just received another from a different area on nhs and that was around the same price... however the SD code free that I bought is as accurate as the others, was cheap to buy and the strips are less than a third of the price.

Unfortunately for people like me who SHOULD be getting the strips on prescription getting it from my gp is like getting blood from a stone! Seeing a doctor or dn is ni-on impossible... getting anything from them for that matter is like pulling teeth!
I have given up with them as the last time I called I was told I should change surgery even though no other surgery can take me in my area because I am already signed up to one AND I have been with this surgery since I was a baby! This suggestion came because I asked for my test strip prescription... they even refused the request from the pharmacy.

I didn't actually know you could go any further, I have complained to the consultant who was shocked at the response the gp gave, but was just told to ignore the gp while the gp told me to ignore the consultant!!! It all just seems messed up to me.

ally1 · Sep 12, 2017

I self fund my meter and strips.
Because I take a anti psycotic which is known to raise my bs levels, my psych has requested my gp to issue me with strips but told he won,t. Because he won't, psych then requested 3 monthly blood tests to monitor me, alas got told no again by my gp.
It's what I call sods law.

Bluetit1802 · Sep 12, 2017

ally1 said:
I self fund my meter and strips.
Because I take a anti psycotic which is known to raise my bs levels, my psych has requested my gp to issue me with strips but told he won,t. Because he won't, psych then requested 3 monthly blood tests to monitor me, alas got told no again by my gp.
It's what I call sods law.

Ally, you know and we all know that your doctor needs sending out to grass.

Keith_Simpson · Sep 25, 2017

Liam8668 said:
I had a routine appt for my blood pressure checked this morning and mentioned about testing my sugars and them not being under 10 for the last 2/3 weeks. I felt like a naughty school child , she said to me I don't understand why you feel the need to test only type 1s should be testing. I did tell her I will keep checking to which she said well that's your choice. I was then told to up my metformin to 3 per day and eventually going up to 4 per day.

Apparently because it's not been 3 months since my last set of tests she wasn't willing to take them.

I just felt very deflated when I came out because it's like I'm not being taken seriously if that makes sense.

I am going to continue testing regardless of what she says as it's me that pays for the strips not them.

Diabetes is complicated but testing is the only way to know what is happening to your glucose levels & to discover what puts your glucose levels up. Obviously eating different things in different quantities is the main focus here but I have also found that in the mornings before eating anything, my liver is releasing glucose which in my case is keeping my fasting glucose levels higher than would otherwise be the case [usually over 7.0]. They don't want you to test because of the cost & they rely on the HBA1C [a single number] to determine how good your control has been because it is simple but the HBA1C is an average & control is actually about range but in particular, what is happening now. An average of what has happened over the last 2 months does not help control in general I would argue but in particular it does not inform or help control what is happening now.

I found metformin helped after eating when insulin production is stimulated but it did nothing to reduce my fasting levels which meant continued higher peaks after breakfast [typically 13 to 14]. Also Metformin caused me to develop Raynaud's syndrome; the day after starting Metformin my extremities [hands & feet] became ice cold for most of the day & then day after day. It was 6 months after stopping Metformin that things finally went back to normal. I suspect when these symptoms are presented, GP's dismiss them as caused by Diabetes having effected the cardiovascular system.. rather than look to their first line [cheapest] diabetes medication.

In the end I managed to get put on insulin which has meant that I am more in control generally but this has been the only way I found to bring down my fasting level before breakfast.

If your levels are always over 10, focus on what the peaks are & report them because if they are regularly above [I would say 12] then you are probably doing damage by leaving them there. 'Nice' say type 2 should be below 8.5 2h after a meal; until starting with insulin I was usually over 10 2h after breakfast.

busydiabeticmum · Sep 25, 2017

Keith_Simpson said:
Diabetes is complicated but testing is the only way to know what is happening to your glucose levels & to discover what puts your glucose levels up. Obviously eating different things in different quantities is the main focus here but I have also found that in the mornings before eating anything, my liver is releasing glucose which in my case is keeping my fasting glucose levels higher than would otherwise be the case [usually over 7.0]. They don't want you to test because of the cost & they rely on the HBA1C [a single number] to determine how good your control has been because it is simple but the HBA1C is an average & control is actually about range but in particular, what is happening now. An average of what has happened over the last 2 months does not help control in general I would argue but in particular it does not inform or help control what is happening now.

I found metformin helped after eating when insulin production is stimulated but it did nothing to reduce my fasting levels which meant continued higher peaks after breakfast [typically 13 to 14]. Also Metformin caused me to develop Raynaud's syndrome; the day after starting Metformin my extremities [hands & feet] became ice cold for most of the day & then day after day. It was 6 months after stopping Metformin that things finally went back to normal. I suspect when these symptoms are presented, GP's dismiss them as caused by Diabetes having effected the cardiovascular system.. rather than look to their first line [cheapest] diabetes medication.

In the end I managed to get put on insulin which has meant that I am more in control generally but this has been the only way I found to bring down my fasting level before breakfast.

If your levels are always over 10, focus on what the peaks are & report them because if they are regularly above [I would say 12] then you are probably doing damage by leaving them there. 'Nice' say type 2 should be below 8.5 2h after a meal; until starting with insulin I was usually over 10 2h after breakfast.

I found that if I have a carb filled meal it takes 4-5 days of fasting and going virtually carb free before see my fasting blood to get back under control. Mornings I am very carb sensitive and can't cope with foods that I can cope with in the rest of the day! It took a while (several months) to find out what foods I could take and what foods I couldn't, it took 4 months to get my Bgl at the level I wanted them at.

I feel really let down by my nhs service the dns seem to have less knowledge than most of the people on here and the GPS even less than the dns! It us really depressing... my husband thinks I am starving myself and so do most people... sometimes I do wonder if they will class me having an eating disorder or a mental condition because of checking so much! TBH I eat when I am hungry and if I am not feeling hungry then I don't! I don't force myself to eat just because it looks good, smells good etc. I used to comfort eat, I worked hard to get comfort from things other than food, it has helped me get closer to people and live a happier healthier life... yet this is considered bad by the nhs because I didn't achieve it through drugs!

slip · Sep 25, 2017

Liam8668 said:
I had a routine appt for my blood pressure checked this morning and mentioned about testing my sugars and them not being under 10 for the last 2/3 weeks. I felt like a naughty school child , she said to me I don't understand why you feel the need to test only type 1s should be testing. I did tell her I will keep checking to which she said well that's your choice. I was then told to up my metformin to 3 per day and eventually going up to 4 per day.

Interested to know if your DSN up your metformin in response to you saying your BG was 10+?

Resurgam · Sep 25, 2017

I bought a meter and test strips from Lidl, and then sent off for a load more strips from Germany - the lancets are cheap enough at the pharmacy in the local clinic.
I tested at first to see how my BG levels changed, but after a while I did not need to as nothing I was eating caused my BG to spike.
It might be beneficial if doctors provided meters and strips for six months or so, along with the right information about diet - but as none of that is on the cards at the moment we'll just have to keep on giving out the knowledge that things could be different, should be different, and will be different.

busydiabeticmum · Sep 25, 2017

Resurgam said:
I bought a meter and test strips from Lidl, and then sent off for a load more strips from Germany - the lancets are cheap enough at the pharmacy in the local clinic.
I tested at first to see how my BG levels changed, but after a while I did not need to as nothing I was eating caused my BG to spike.
It might be beneficial if doctors provided meters and strips for six months or so, along with the right information about diet - but as none of that is on the cards at the moment we'll just have to keep on giving out the knowledge that things could be different, should be different, and will be different.

Once you get yourself "sorted" and understand your body which is unique to you I agree you don't need to test... but our dns and gps etc are so behind the times and under trained in diabetes etc I agree it isn't on the cards.

I am soooooo glad I found this site. I am so grateful to all the people on here who have given me information and helped me to help myself. It empowered me and gave me hope as well as a future.... I don't see the nhs changing anytime soon, it would take A LOT to retrain all the staff.

maureen5752 · Sep 26, 2017

Saw DN yesterday, who asked if I really needed to see her!!!! FINALY got my yearly feet check after some agro, they wanted I up my statins but was told lots side effects, one being hair loss ect!!! Told don't need to test!!! I give up, I was being pushed to finish & leave, cos of next patient.

Damtov8 · Sep 27, 2017

It's your body and your life. They will not have to live with the consequences but you will. So you just have to learn to ignore them or be very rude. And it is well worth investing in a freestyle libre which is a continuous blood sugar monitor. Even if you cannot afford to wear it all the time it is worth wearing it now and again to learn how your body reacts to different foods. It has helped me reduce my

rayser · Sep 27, 2017

Liam8668 said:
I had a routine appt for my blood pressure checked this morning and mentioned about testing my sugars and them not being under 10 for the last 2/3 weeks. I felt like a naughty school child , she said to me I don't understand why you feel the need to test only type 1s should be testing. I did tell her I will keep checking to which she said well that's your choice. I was then told to up my metformin to 3 per day and eventually going up to 4 per day.

Apparently because it's not been 3 months since my last set of tests she wasn't willing to take them.

I just felt very deflated when I came out because it's like I'm not being taken seriously if that makes sense.

I am going to continue testing regardless of what she says as it's me that pays for the strips not them.

My Gp told me I didn't need to test but I still do at least 2/3 times a week. I am type2 and well controlled for 14 years. Last year I started getting neuropathy in my left leg, from the knee down to and including my foot. It is also in my buttocks and left hand. I am really disappointed in this as I very carefully controlled my sugar intake when I was diagnosed, 14 odd years ago. It seems the damage is done before diagnosis at least that's what my GP reckons.

david1241 · Sep 27, 2017

Hello Liam .When i was diagnosed with diabetes over 2 years ago .I mentioned about testing my blood sugar.She said ,You have no need to test yourself for high blood sugar.You are only a type 2 diabetic.I said how will i know if i'm eating the right food to control my diabetes.She said oh well i can't prescribe test strips.I tested myself anyway.Then she insisted i should take statins.which i refuse.so she got nasty.So i told her i would sort my diabetes out myself Then i walked out of her surgery never to return again.I am now diabetes free.I have been for 6 months.If i had taken the treatment she was offering .I would now probably in a wheelchair weighing 20 st .Having to have insulin 3 or 4 times a day ,blind and having my legs chopped off.I have yet to find a decent doctor.I have found they are few and far between.I had diabetes 6 years before they told me about it.despite having routine 6 monthly blood tests and blood pressure checks

Freema · Sep 27, 2017

Liam8668 said:
Thank you everybody. I was just so shocked at the reaction I got it was like I was so naughty.
Still going to keep testing and keep an eye on things.
Thank you again

If you have trouble getting lower in blood glucose Then try writing down a whole day of content in meals , and People here will advice you What you need to twist and maybe What you could eat instead

️

And for Gods sake keep testing

efernandes · Sep 27, 2017

Please do not listen to her!! Continue with your testing, as this is the only way you will discover what foods give you high readings. We are all different and certain foods will trigger high BSs. For me, it is pizza and sweetcorn. I never would have found this out if I didn't test myself. I, too, have been flatly refused to provide me with a meter, testing strips and lancets despite arguing my case. I have taken control of my own health and purchased the whole finger-testing kit (approx £100). I got very little support or encouragement from my previous DN. Do not be deflated or discouraged!! Keep on testing - you're doing all the right things.

MikeTurin · Sep 27, 2017

If the problem is that you aren't entitle to get them free, pay for it with your pocket. It sucks, I know, but sometimes it's a necessary thing. IT's correct that you haven't and shouldn't test everytime like a Type 1 or type 2 insulin-dependent, and you can adopt a partial sampling, like the BG fasting level once a week, and postprandial while testing new foods, for instance....

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