Test Strips - Complaint Response from the Dept of Health

joshuarobert said:

... i was told july2014 i was boarderline diabeic iwas given a lealet and sent away ...

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I think I had similar experiences - and wish I'd understood what the GPs were warning me of.

Because of some foot problems, around 10 years ago one GP started testing my blood glucose levels, and for all the years after that until T2 diagnosis earlier this year, I was in that zone above normal but below T2. They always told me to lose weight and take more exercise, but no-one ever sat me down and talked to me about what diabetes is, nor to point me in the direction of this website, for example. With good support and education, I think I could have not just stayed below the T2 level, but got the levels down - but it would have needed real support because this has been in a period of my life with all too many other problems to occupy my mind.

Since the T2 diagnosis and the diabetic nurse telling me to get in touch with Diabetes UK, my understanding of it all's been transformed, but I also suspected my GP wouldn't prescribe testing supplies, so have just bought my own - so far. I'm due to attend an X-PERT course in September, and thought I'd ask about getting test strips and lancets on prescription there. they're going to know what the GPs around my area are doing. I'm on no medication, this could be a cheap way for them to keep me going onto medication.

You

Scouser58 said:

... you were given the cheapest option help, a bit of paper, ... this site is been my 'learning curve', the expert knowledge is immense...

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You do feel there's so much hypocrisy around all this, don't you? And so much short-term-ism. But this website is making an enormous (and positive) difference.

Scouser58 said:

the nhs... This site has and will continue to be an eye opener and learning place for me,,,ttfn from Karen,

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Despite having learnt a lot of the same things from seeing how my mother did (and didn't) get the best of advice, support and treatment when she developed Alzheimer's, it's still a bit weird to find you've got to actually NOT do what the NHS is telling you to do. It's people in Diabetes UK who've got me onto a low-carb diet, buying a monitor and testing, not my GP or the diabetic nurse.

There was that same sort of big difference between what the NHS was doing for Alzheimer's and what the Alzheimer's Society was pointing us in the direction of and encouraging us to do. I'm sure it's no coincidence that both the dementias and diabetes are long-term conditions there's no neat pharmacological or surgical treatment for.

JenniferW said:

Despite having learnt a lot of the same things from seeing how my mother did (and didn't) get the best of advice, support and treatment when she developed Alzheimer's, it's still a bit weird to find you've got to actually NOT do what the NHS is telling you to do. It's people in Diabetes UK who've got me onto a low-carb diet, buying a monitor and testing, not my GP or the diabetic nurse.

There was that same sort of big difference between what the NHS was doing for Alzheimer's and what the Alzheimer's Society was pointing us in the direction of and encouraging us to do. I'm sure it's no coincidence that both the dementias and diabetes are long-term conditions there's no neat pharmacological or surgical treatment for.

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You are so right, the medical profession tells you eat carbs and have snacks, of carbs and the actual patients who have gone forth and investigated are saying another, and they have got the results they want, i.e lower bs readings, and lower weight and feeling so much better for it.
I agree with the Alzheimer's information from the doctors, and then from the association, the association are the one's who have learnt from the patients and from talking to those who are in the condition either as carer or or patient, such life is a mix of opinions and experiences, were do we stand, on the side that does us the most good for our health, ttfn from Karen.

Bluenosesol said:

Folks,

I recently made an official complaint to the DOH about my local PCT adopting a policy of non precription for T2's who are not on insulin. The response is below. Pay particular attention to the words I have highlighted in red....

Dear Mr Dawson,

Thank you for your email of 1 February about the provision of blood glucose testing strips to people with diabetes. I have been asked to reply.

The Department of Health is aware that self-testing of blood glucose is an important part of the self-management of diabetes.

The guidelines from the National Institute for Health and Clinical Excellence (NICE) on the management of Type 2 diabetes set out circumstances in which self-testing can be useful, and in these situations it can support people in managing their glucose levels and avoiding hypoglycaemia.

The NICE guidelines are also clear, however, that self-monitoring of blood glucose is helpful only as part of an overall package of support for self-care, and it is vital that the results of self-monitoring are fully understood. This means that decisions about self-monitoring should be made on a patient-by-patient basis, and healthcare professionals should work with people with diabetes to make joint decisions about the value of self-monitoring of blood glucose and prescribe accordingly. Any Primary Care Trust (PCT) that is automatically discouraging the prescription of blood glucose testing strips is not acting in accordance with NICE’s advice.If you have concerns about your treatment in particular then you should discuss them with your GP. You can also contact the Patient Advice and Liaison Service (PALS) for the Solihull Care Trust on 0800 783 2894. This line can provide information and advice about NHS services.
I hope this reply is helpful.

Yours sincerely,


Daniel Cavill
Customer Service Centre
Department of Health

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Does this still apply? My doctor won't give me any testing supplies even though I have been diagnosed with T2

Hi . Just a quick note . Testing your BG implies a pass or fail . I don't test my BG I monitor it . And then I'm able to make informed decisions with the information iv gained . Next time see your doctor tell him you need to monitor your BG not test it . I know it's only a change of words but can your doctor tell you that you don't need to monitor you diabetes

Clive

I am in the process of doing my own diabetes review for my doctor.

I'm going to ask him for test strips for my meter (purchased myself) because I want to use the money I will save to buy a ketone meter and strips. That way I will be able to check whether I'm in nutritional ketosis and use it as a safety thing too in the event that I fall ill.

None of his other patients with diabetes low carb so I feel that I need to have a very scientific approach and convince him that monitoring my BG (thanks Cl1ve) is worthwhile.

Celeriac said:

I am in the process of doing my own diabetes review for my doctor. ...

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Today was my last session on the 6-week X-PERT course, and one of the things we talked about in the final review was, in effect, how to handle your GP and get what you were asking for (extra tests, a meter and supplies, etc) what came out of that chat was needing to think things through and go in prepared and with the relevant evidence available if appropriate. In other words,exactly what I can see you're doing. It's a good day when you get the same sort of advice coming from more than one direction.

Jennifer the reason I'm doing it, is that I think it's the best approach to show my GP that I do take my health seriously and am invested in this.

If you look at it from a concerned GP's point of view, I'm going off-piste - going against everything he has been taught in medical school about diabetes, nutrition and cholesterol. I feel that mostly he just has stifled his own concerns and let me get on with it and that is a leap of faith in me, as a patient, because I'm not a medical professional. So I want to reassure him, that I've done a lot of reading.

He does insist though, that I give him proper studies as evidence not pieces from a tabloid and he does rather scoff at people like Dr Kendrick and Dr Oz.

I'm surprised and pleased that X-PERT takes such a proactive approach, but I believe it's not actually run by the NHS ?

So far, I have refused to do any courses, because I just get so cheesed off with the NHS low fat party line as it were, from nurses.

Celeriac said:

Jennifer the reason I'm doing it, is that I think it's the best approach to show my GP that I do take my health seriously and am invested in this. ... I'm surprised and pleased that X-PERT takes such a proactive approach, but I believe it's not actually run by the NHS? ...

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You're right - the X-PERT courses are run by xperthealth.org.uk, so I felt all the way through that the teacher / tutor had a degree of independence which my group definitely took advantage of. We also had two retired medicos in the group! So often we switched from just learning the basics to hearing about all sorts of different personal experiences and things people were trying and I felt she really encouraged all of that.

I assumed the X-PERT course arrangements was a bit of the NHS sub-contracting, and in this case, there was a bonus coming out of that. However, our teacher-tutor really was good - the whole group agreed on that. We all thought the course was a lot better than we'd been expecting, but as always, I suspect some of that comes out of how that particular person worked with the particular group.

bluejeans98 said:

Also from the manufacturer you don't pay VAT as you are diabetic. Very quick service too.

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hi bluejeans, its been a long time since i last put a message on here. i gave up. i was getting no emotional support from anywhere locally. and no practical support from my GPs.. finances have gradually got tighter (as with most people i guess) and i got very down. i could no longer afford to buy strips , so i gave up. i stopped testing. i stopped monitoring what i was eating. my IBS was getting worse cos of the metformin. my HB1AC was 49... 8 months ago ,i suppose thanks to being on the 2 metformin. but when it was done 2 months ago it was up 75 again.almost as high as when i was on the steroids. ive not had any though for well over a year. of course i was sent to see the nurse practitioner who is our diabetic teams head nurse. so i went in all guns blazing. i told her i had given up. that i felt i wasn't getting any support from anywhere. and i could no longer go on buying my own test strips. even as low as £7 for 50.,i broke down at one point (prompting the question "are you on antidepressants?"....my reply ... "no and i wont go on them/ this is not depression its frustration that i cant get support in any shape or form other than practical with housework. but i need emotional support. not people telling me i should not be testing. and don't do this do that....... and GP's that don't listen, i need to be able to test so i know what im doing. bad enough having to watch what i eat cos of the IBS but diabetes doesn't behave like IBS does. eat something that your IBS cant tolerate. you know within 1-2 hours(usually just as your supposed to be going out and taxi due or whilst your out if your unlucky) but diabetes doesn't show up like that.,... anyway... result was a promise to work with me, a change of tablets to 10mg dapagliflozin once a day..this , although has side effects, (like acting like a very mild diuretic for one) has calmed my IBS down (although 2 months down the line its sent me the other way,from diarhoea to constipation . (manifested only this week so will be ringing surgery in next couple of days.meanwhile prunes are a good rememedy.lol)
this does mean i can go out without havin to think about taking imodium just in case. my bloods are doing fine most of the time. i have to monitor cos these tablets can cause a hypo. but only fasting and before bed. so dare not eat too late and if i need to go to bed much earlier than usual, then i have to do one of 3 things.1. not have supper even though i know i wont sleep if im hungry. 2. take the blood test and to hell if its high . at least i wont have a hypo or 3. stay up till about 2am then take it.(not always possible. depends how tired i am).ill get it sorted one way or another. (bad if go out and dont get in till late, at say 11pm starving hungry and need to eat.and staying up till 2am means im hungry again as im used to eating 4 hourly when awake.. other side effects are thrush @(canestan is keeping that at bay) and one they didnt tell me about, almost constant cystitis. a course of antibiotics got rid for a few days but it came back again. so another thing to talk to nurse practitioner about. cos that does make you feel miserable.asnyway. thats the update and at least they are now helping (could do to test more often.. did buy one box of 50 of the strips.for first couple o weeks so i could test more often at first but now just do it fasting and at bedtime as asked.the monitor is a NexusRx with nexus glucoRx strips.plus am now not getting the continual hassle of being told i shouldn't be testing. as i told the nurse, if i feel the need to test for my own peace of mind then i should be allowed to do so,otherwise i simply feel like im wallowing in a sea of mud.

Hi Mommayorkie. Time to do the STOP DROP and ROLL. Stop beating yourself up about things. Drop any bad habits you have slipped back into. And Roll onto a healthier you.I fell of the wagon and weight crept back up as did my BG levels. I had stopped buying my test strips as I too could not afford them. But I felt I was losing control of things. Then I did the stop drop and roll and have bought some test strips. I only use every couple of days. They are my reminder not to take the Demon D for granted. I have now lost a stone weight, am doing more walking. And eating healthy again. It can be done. And you got support of the people here. Take a copy of the letter with you to your doctors at your next appointment. And if you have no joy then write to the office listed on the letter.

Take care of yourself.

hi bluejeans 98 and scouser 58
the side effects of the new tablets are possibly easy to sort out. im very pleased actually that they have stopped the IBS symptoms as they were adding to the food problem. now i can once again eat pork which is the one meat i do like, the odd pork pie providing its a good one ,tho ive yet to find one again as nice as those i used to buy(no longer on the market). and they are now giving me test strips.though like i said,they only want me to test twice a day... nothing has been said about it being only for a limited period though.as for my weight. its dropping off me (again i was told this would happen/. ) not that fast but i was 11st 11lbs back end of aug. am now 11st 6lbs as of this morning so 5lbs in 6weeks.as for walking. 1. i have not been able to go anywhere on my own unless its A to B in a taxi, for over 10years. i can walk as long as in areas with plenty of seating. 1 due to spinal spondylosis of 24 years duration now .2 asthma and COPD.so breathing problems. so even though i can walk its pretty limited. bought myself a walking treadmill a few years ago. could not manage more than 5 minutes and even then i went dizzy. i sold it in the end.i used to walk miles in my younger days.and cycled too. cant do it now.i think maybe a change of painkiller would help as co codamol has codeine in it. and possibly the dose of the diabetic tablet may be too high.. hence the side effects.
something to discuss when i next see the diabetic nurse who as i have already said, is also a nurse practitioner. no ive not yet been referred to hospital thank goodness. would cost me 30quid return each time. or if I used hospital transport would need extra money to buy food with as they tend to pick you up hours before your appointment, go all round the houses which my back would not allow(those seats are not at all comfortable anymore than hospital waiting room chairs are..) and they don't bring you home till 5/6pm. if your lucky. i have a dog needs letting out, cant be away so many hours. i don't walk him (before anyone asks.lol.) i have volunteer walkers from the cinnamon trust who do that for me.