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Wish they'd make their minds up

Grazer
I didn't intend this to be a public flogging of any HCP and I'm sure Pipstick only wants the best for everyone. All that I ask is that HCP's, GP's etc would be honest and say why they don't want to issue monitors or sticks, don't continue rubbishing us it is cost and nothing else. I appreciate some people may struggle monitoring themselves but most can be educated. I actually bought my own monitor and have never once asked for a prescription for sticks so you can understand my frustration when a HCP tells me I'm waisting my time. It's my body and I intend looking after it the best way I can.

Cheers & Thanks

Ian
 
I'm on your side Ian, except you SHOULD ask for a prescription, and explain how you intend to control your diabetes by testing, thus saving costs of complications in the long term. Be forceful. Who knows, they may give in!
Good luck and welcome to the forum!
 
JIMIAN said:
All that I ask is that HCP's, GP's etc would be honest and say why they don't want to issue monitors or sticks, don't continue rubbishing us it is cost and nothing else
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I totally agree, what an education SMBG has been for me and the positive effect it has on my Diabetes management, I'd be in a much worse place now without it.

I was all geared up for a fight with my GP after reading about the lottery on who gets SMBG tools on prescription but I'm pleased to say they were added to my repeats without question. I'd push for them like Grazer suggests Ian, after all it is your NHS and if your hitting a brick wall maybe its time for a change of Doctor/Clinic.

Keep well
 
pipstick said:
Hi Ian,
I'm a DESMOND educator, and we constantly get asked about monitoring blood sugar levels. There was (fairly) recently a study done on SMBG (self monitoring of blood glucose) where three groups of newly diagnosed patients were randomised into 1, blood glucose testing 2, urine testing and 3, nothing at all. it showed that all three had good benefits, including doing nothing at all. .....

your HbA1c that they do every 3 months is a much better indicator of your progress (think of it as if you checked your blood sugars every second of every hour of every day for 3 months!). does this help? pm me if you need to.
Click to expand...

How long was the study? How well trained were the patients to understand their condition & their results, & to act on them? How were the "good benefits" measured?

That study was discussed here - you might be able to find the thread - & predict the way the discussion went. If, say, the study went on for a year, the patients would all be benefiting from a reduction in sugar consumption, & eating complex carbs. That diet would be an improvement on the uncontrolled diet before diagnosis. Testing was irrelevant. In the short term, HbA1c would be an improvement. In my case, The first HBA as a suspected diabetic was 11. Knowing I possibly had diabetes, I immediately cut out sugar, & a confirming test a month later gave 8.6.

The trouble with relying on the HA test to monitor "progress" of the disease is that all health professionals "know" that diabetes IS progressive, so the test is to tell the medics when & what to prescribe. It's for them, not us.

I have experienced both the predicted progression to complications - peripheral neuropathy, retinopathy, chronic tiredness (the result of following the NHS/DUK diet) - AND the reversal of those complications by following a low carb diet.

In the chronic state my HBA rose to 6.7, while my daily fasting tests rose to an average of about 7. The Dr was unconcerned about the diabetes, but suggested referring me to hospital for tests. Cutting the carbs immediately reduced my fasting BG to below 6.
 
My concern is the diversity in care. Posters on here seem to get such varied support and help and what is available in one area is unheard of in another. In my PCT there is no referral to a consultant, HBA1c 2 x a year. Diabetic nurse (practice) once a year and no DESMOND offer. Diet was a Heart Diet book - no mention of low carbs rather low fat so that was an eye opener as well! Had to ask for a referral to have a retinopathy screening and had my test strips stopped after the first repeat prescription! (although these have been reintroduced as I drive a minibus for school and pointed out the DVLA guidelines).
I am sure the HCP on here do have peoples best interests at heart but maybe their energies would be better in campaigning for more uniform healthcare and also have national guidelines for diabetics rather than mix and match over the country. I am happy I have found so much information on here - otherwise I think my glucose levels would still be on the up and I would be doing all the wrong things!
 
My concern is the diversity in care.
Click to expand...

In a sense there isn't diversity in care - the NHS/DUK is one size fits all. We are told that the diabetes diet is the same healthy diet for everybody. In one breath they say, "eat plenty of starchy carbs" and "even if you follow our advice, your diabetes will progress to the need for increased medication & complications."

When I have contacted DUK to report my results achieved by rejecting their diet, the reply is, "If your diet benefits you, keep it up, BUT everybody is different, so we could not possibly change our high starchy carb recommendation for everybody on the basis of your experience."

However, I can't fault the attitude of the Hounslow NHS professionals - they ran weekly diabetes education sessions, various courses & have a support group. Trouble is, they accept DUK's false diet information. I know other areas have much less support.
 
A DESMOND Educator eh! What exactly does that mean in your case pipstick?

This is the criteria for an educator. Which category are you?

A DESMOND Educator must be:

EITHER a registered health care professional who is:

•Able to demonstrate a working knowledge of diabetes
•Able to demonstrate commitment to being a reflective practitioner

OR a non-registered health care professional who:

•Is employed by an NHS organisation as a member of a diabetes care team in a clinical or educational role, in which there is at least one accreditedDESMOND registered healthcare professional (HCP) Educator to provide mentorship
•Will deliver DESMOND sessions with a DESMOND accredited, registered healthcare professional Educator at all times.

It seems as one member put it you are spouting the 'party line'. Maybe you should take note of those that have educated themselves and in many cases know more than the so called 'educators'.
 
pipstick said:
Hi Ian,
I'm a DESMOND educator, and we constantly get asked about monitoring blood sugar levels. There was (fairly) recently a study done on SMBG (self monitoring of blood glucose) where three groups of newly diagnosed patients were randomised into 1, blood glucose testing 2, urine testing and 3, nothing at all. it showed that all three had good benefits, including doing nothing at all. there is a problem with quality of life being affected as well with testing you blood/urine sugars in that it's a bit like dieting and getting on the weighing scales every day - you can get a wee bit obsessed with it. the blood sugar testing only shows what your blood glucose levels are for that moment in time, if you did it again 5 or 10 mins later, you could get a completely different result. there are lots of things that would affect your glucose levels, inlcuding stress, illness, activity levels, mood, so it's not just food/drink that affects your levels. where i agree that a target blood glucose level is 4-7mmol, i wouldn't necessarily say that you have to monitor them yourself to get a good result. your HbA1c that they do every 3 months is a much better indicator of your progress (think of it as if you checked your blood sugars every second of every hour of every day for 3 months!). does this help? pm me if you need to.
Click to expand...

I am quite shocked that you are a DESMOND educator...

As you don't seem to take on board that HbAc is actually flawed...

HbA1c is totally based on an adverage over a period of time it has no ability to provide a SD (sandard deviation) which is a very important factor of understanding if control is good, bad or ugly even at depicting a risk factor it has it's limitations... And it does absolutly nothing to detemine day to day control, whether food/drink, exercise, stress, illness has had any impact to it's result..

So a T2 is diagnosed, you send them off with some information concerning food choices, and some tablets and come back in 3 months and we see how you'll doing.. At this point their HbA1c is 7%... 3 months later they return for the review and their HbA1c is 9.8%

Now ask yourself why this may be?

Which you can't answer as the HbA1c won't tell you, as it can't tell you whether this is food related or not.. Nor can your patient say whether it's based on stress or whether they've been ill as such... Can you remember what you ate of the 4th September, did you feel stressed or had a snotty nose, I sure know I couldn't without looking at my data...

But the HCP is willing to up medication etc based all one figure in front of them :shock:

Worse is that the patient themselves are left clueless to what they might change within their lifesyle to improve things.. So next review will it have changed or got worse..

With T2's more so at the begining they do need the ability to test frequently, not just a couple times of the day, but before/after meals, when exercising or if they feel off... Then they need to be taught how to interpretate this data... So they can see that yes they could change something perhaps cut back on their food intake, or avoid certain foods at certain times or completely.. Or perhaps add a bit more excercise into their routines.. But once they've got it sorted, then they only need to test a couple times a week, or when ill or routines change or something new happens...

Then when they have their review. the HCP can make a clinical decision from full facts rather than just stabbing in the dark...

And I'm a T1 diabetic by the way
 
if you read my original reply, i mentioned newly diagnosed type 2's, not those on OHAs or insulin. i wholeheartedly agree with those on medication being able to test. i'm not 'towing the party line' as you seem to think, just telling you what the research states and what the guidelines say. i know it is a very sore point with people, but if i'm to play devil's advocate, if you were in charge of prescribing and budgets for your area, and the research didn't give any clear consensus on which method, if any benefitted newly diagnosed type 2 diabetics, what would you do? so yes, it does come down to money. but that is the choice of medicines management and your local HA, not individual HCPs. i'm sorry if i've caused some people to jump on my post again and accuse me of being 'one of them' and not understanding people with diabetes, but i'm just giving you a heads up as to why some areas don't always advocate testing, which is what i thought the original post was asking?
 
Well then, why not be honest in the first place and say "it's all about the money" instead of trotting out the "diabetics get a wee bit obsessed with testing" and " 5 or 10 mins later, you could get a completely different result"?

Those answers are technically and scientifically wrong and besides the point. I pay for my own strips and my own meter, but I still get the same "don't test" mantra from my HCPs.

And, if I was prescribing the budgets in my area then I'd certainly include the cost of dealing with the consequences of the bad advice that you are dealing out, when those diabetics that you advise not to test are reporting for their amputations.
 
pipstick
We already know the ins and outs of why testing is trotted out as not being advisable! We don't need another HCP telling us why, they (HCP's) need to listen to those who can prove it's beneficial, not just trot out the same old, same old here! Go away and tell them their advice is flawed whatever any spurious research says!

As for agreeing about those on medication being qble to test, if those who start without meds were given better advice from those self same HCP's and the facility to test in the first place then they may never end up on meds! Simples.
 
Pipstick, your response regarding "newly diagnosed" and "not on medication" is nonsense. I was, and still am, on diet only. From diagnosis with an A1c of 8.2, I went to 5.9 in 4 months by ignoring the HCP and testing. If I'd followed the "professional" advice I'd probably be on meds now. You've reached the bottom, probably time to stop digging.
 
While I agree wih almost everything posted above I am a little puzzled as to why people think it desirable to have constant check ups by their practice nurse DSN particularly when the disagee fundamentally with what the HCPs are obliged to tell them.

I have never been on any sort of a course to educate me about my diabetes and from what I read here I don't believe I have missed much. I am a T2 so I know it is different fot T1s.

I think it was Grazer who posted the other day hat I was "arguably lucky" because one of the nurses in my practice {I am sure mistakenly} insisted that I have to have a review with the nurse BEFORE I have my 3 monthly HBA1C. Then afterwards- when she has the results the DSN will telephone me to tell me if I need to cjhange my medication.
I have to ask what is the point of that?

Nurse reviews do the weighing measuring and bp. I do all this for myslf. I dont have a weight problem and my bp is only high when I see my DSN. I I have 3monthly HBA1Cs because the consultant at the hospital ordered this as noone believed that my levels would continue low. Levels achieved by testing ,low carbing and some increase in exercise. I eat very little - always have and was totally amazed to discover how i react to carbs.
The eye clinic are very reluctant to accept that I am probably one of that group of people - for there is one- who do not respond to the treatment currently available for macular oedema. In fac all my HCPs
have to be reminded constantly that loweing my levels appears to be more dangerous as i keeps causing bleeds.

There is only a point in constant reviewing and monitoring patients if it serves some purpose. The DSN knows very litttle about medication for T"2s. She has given me incorrect information twice.
When I recently felt I needed some help I had to visit a GP and suggest a solution myself. The Gp reluctantly agreed , reluctantly, because she felt she was not qualified to help me! I should see the DSN. I explained that the DSN had wanted to presribe a drug which would have blinded. me. She then recommended I see the nurse just recently "trained in diabetes", She who called and did not understand why the results were needed BEFORE the review!

II was only referred to a diabetes consultant because my eye specialist was concerned. He was only able to help me because I was able to show him{ from the tests I always used to record for a week before seeing the doctor} that I was suffering huge spikes at times although my readings were in general in the 4s and $%s. Another reason for testing.

My point is that unless all these reviews help in some way and are more than a box ticking exercise they are worse than useless. The only advice I ever received was that I must go on insulin while coninuing to take all my same medication. In spite of readings in the 4s and %s.
Immediately I began to take sitaglyptin I suffered severe hypos and had to stop taking much of my medication. The same thing would have happened wih insulin no doubt with who knows what effect upon my sight.
Its he same with the "diabeic educational " courses. Unless they benefit the patient what use are they?
MyHCP" seem merely to have usurped the role of the recepionist which as many will know was to keep patients away from the Dr.
My DSN and her satellit
es are injurious to my health. They raise my BP and wind me up causing my blood sugar levels to rise.
I know some diabetics have a positive experience but there should be some way of measuring "the usefulness of these people. I once attended a review where the nurse spent the whole time running from room to room trying to find scales which worked. I had been weighed the previous week by the same nurse.And now here we have pipstick elling us what we already know and imagining she is educaing us,

I think the NHS is looking in the wrong places to save money. When I was first diagnosed meers and test strips were handed out like sweeties. Noone was told how to use them and noone cared how many you used or didn't use.
Maybe we could keep the srips and lose the DSNa and Educators. Or some of hem.
 
Hi everyone,
I just wanted to write something after the things I've read on this thread after I thought I'd origianlly replied in an honest manner.
It appears that one does not have the right to an opinion unless you have diabetes. I now realise that if I did have diabetes and hadn't listed myself as a health care professional on my profile, then my comments would have been taken completely differently.
It seems like if you don't have diabetes or are a health care professional, then you are viewed suspiciously and anything you say will be taken out of all context and a minority of people on this forum feel the need to turn you into some sort of Frankenstein's monster. I have learned some valuable lessons during my short time on this forum;
1, words in a text document can and will be taken out of any possible context by people who are suspicious and bitter towards health care professionals due to any number of reasons.(blame me for being young and naive and trying to see the good in all situations).
2, the words of a minor few can cause more hurt and distress than they probably originally intended, especially when the person it is directed towards feels they have only been trying to help and their intentions were completely innocent

I understand that people may disagree with what I've said or the opinions I've had, as I do appreciate that everyone is different and there is no such thing as 'blanket advice', but to be vitriolic to the point of maliciousness is completely uncalled for.

I did intend this to be my last post because I've had enough of the bitterness and childish comments that I've come across on here directed towards me for what I feel is very little reason.
However, if I did that then I would be letting the people down on my other post who actually believed in me and realised that my intentions were good.
So while I won't be posting on diabetes.co.uk again formally, I will give you an update on how my talk went in a couple of weeks, for the benefit of those who seemed to have mostly positive comments and wanted to help. I know I am not the person you have made me out to be and I hope to have a long and hopefully hugely fulfilling career in front of me.
We all have a huge amount to learn from each other and I know that the comments from people on here are from a minority of people, so I don't intend for the experience that I've had on here colour the time I have with patients.
I just hope that those that formed a 'flash mob' in order to show everyone just how much they hate health professionals, find something to write that's positive and that one day they find an HCP that they actually respect. Please don't base your opinion of the whole NHS or health care system on one person, just as I don't base my opinion of the diabetes population as a whole on the comments of a few very negative and hostile people on this forum.
I'm very sorry to the owner of this original post, that it seems to have been completely taken over by these people, following my initial reply. I hope this hasn't soured your experience of posting.
Thanks
 
I'm new here but I think that Pipstick has a point , a balance of views is a good thing .

fur instance .. last week I was put on Metfortin , GP1 said take 1x500 per day for a week then take 2x500 per day then we will do a blood test again mid November . I then had my annual ( 2 months late ) check with my local DN , she said GP1 should have had me on 2x500 per day from the start and I should arrange a blood test in Dec , I saw GP2 because of yet another abcess , GP2 said I should take 1x500 for 3 weeks then start on 2x500 met per day and didnt mention a blood test .
Three health care professionals in the space of a week have given me conflicting instructions .. on balance I'm now confused.
I would prefer to have clear instructions that will help me sort out my Db ( t2) , clearly I need to go up to 2x500 , but when seems to be optional . I'll increase my dose in the middle of next week as that seems to be aout the average .. now I'm wondering .. I take my met in the morning at breakfast .. maybe I'll take the other with my evening meal that should give me some balance .

The point Im trying to make is that folk do have differing opinions but I would hope that a professional would give clear instructions based on what evidence they have .. in this case the NHS do seem to be way behind on the carbs thing.

Re testing some will / some wont , lifes like that .

I hope Pipstick keeps posting, it makes for interesting reading.

HBA1c 12.6%
Cholesterol 5.5.
BP 132/80

Thanks
Hamish
Ipswich Suffolk
 
Hmm..shame it has gone like this. But anyway, my humble opinion for what it's worth.

Firstly Pipstick, as you may have noticed, I am not really the argumentative type (well, unless pushed!) But-you have made a remark about not being allowed to have an opinion here unless you are diabetic. Below is the info from Diabetes.Co.Uk on the main purpose of this forum.

Diabetes Help & Support

Diabetes.co.uk is here to help and support diabetics and those affected by diabetes. This is a free, community-led information and support resource for people with diabetes.

This mission statement is quite clear so that has cleared that one up although personally I don't have a problem with a HCP posting as long as they do so with an open mind and listen, really listen to what the forum users have to say.

I wonder if you have had a really good look around the forum and read some of the posts on here? Some have a good relationship with their HCP but I would guess the majority do not, read some of the comments given to those newly diagnosed, just how confused people are. Misleading/conflicting information and above all the contentious issue of self testing.

Many of us replied to that post, all different with no "agenda" except the sure and certain knowledge that the reasons given against self monitoring are financially orientated (as most of us suspected) and that the argument given by most HCP does not hold water..it's fallacy.

Again, look at the statistics. Are you willing to see that what is currently being offered is ineffective, that to take away the rights of people to look after their own health, to be pro-active is failing those of us who want to control our diabetes and avoid complications?

Are you willing, you personally as a HCP, to take on board what people here have said or have you come here with fixed ideas, a one sided viewpoint about the things that REALLY matter and are just after negative anecdotes for your talk?

I would hope that facts speak for themselves. Many HCP's stop us from testing, give us dietary advice that will do more harm than good and put us on meds which they then increase and increase and increase..this way is not working and it hasn't been for ages..numbers continue to rise.

I speak only for myself, nobody else. This is what I think, 3 months down the line after my diagnosis. At the beginning I was able to test, adjust my diet, started to lose weight and felt good. 3 months down the line, I cannot afford to buy testing equipment, feel absolutely awful, depressed and on top of all that, all my doc wants to do is put me on meds. I know for a fact that just two slices of wholmeal bread puts my bg's into the realms of 12's. I know that I am a person that can manage to eat a potato or two without a massive rise to my bg's. Pasta sends me up into 13's, rice doesn't have nearly as bad an effect. I know these facts because for a short time, I could test. If I didn't know, I would still be happily consuming the two slices of toast for brekkie and maybe that ham sandwich for lunch..a bolognese for dinner..and then three months down the line my a1c is on the rise, meds go up and the whole vicious circle continues. Can you see the problem?

We are getting a raw deal. Perhaps you could print off some of the posts here and use them as a guide for your talk, it might be enlightening for some people.

I woulod like to hear how your talk went and what changes are proposed as a result of feedback.

Thanks.
 
re metformin, Mish 1953:

my doctor started me on metformin, 1 x 500mg daily for one week, increased to 2 daily for the second week, on to the full dose (for me) of 3 x daily in the third week.

This is because of metformin's tendency to cause stomach upsets, nausea and diarrhoea when we first start taking it. By starting the dose low and increasing to the full dose slowly, our systems have more time to get used to it - and the side effects are less bad.

In my opinion your first GP was right; the nurse who wanted to start you on 2 a day either doesn't believe in the side effects or is a sadist :shock: :wink: .

Many people find that taking their metformin with a meal helps to lessen the side effects. You'll probably get them anyway, but they should soon settle. If not, you could ask for the slow-release version which is more expensive but has fewer side-effects.

Yours is a good example of the variation in health care between different HCPs, never mind different areas.

Pipstick, I hope you keep reading - yes, and posting too! On a forum like this, you get the views and opinions of a group of pro-active people who have taken the trouble to inform themselves about their condition and treatment, and in that respect we're a self-selected group, and cannot be considered to be the norm. Many of us have found that we are never listened to by the people who are supposed to care for us, and we get very frustrated!

You have had the courage to raise your head over the parapet by admitting to being an HCP and an Educator, and unfortunately you've taken a lot of flak. If you've never met a pro-active Type 2 who's well in control of their diabetes before - and you may not have! - it will have taken you by surprise.

It's too easy to misinterpret the tone of a post on a forum like this. Although some of these posts seem as if they are attacking you personally, no-one believes that the appalling state of diabetes care in some areas of the NHS is specifically your fault! If you have been trained by the NHS, this is probably your first introduction to an alternative opinion on diabetic care; it's unfair to expect you to do anything other than "toe the party line".

We need to get you on-side, to start a 5th column inside the NHS :wink: . So please try not to take things too personally; I don't think anyone would actually want to punch you if they met you face-to-face! Maybe if we all stepped back a bit and took a deep breath, we could get a good dialogue going that might be of use to both sides.

I definitely want to hear about your talk and how it went; if you can give some idea of our point of view to your audience, you may well do us a favour. Do keep posting!.

Viv 8)

edit - yet another typo!
 
IanD said:
My concern is the diversity in care.
Click to expand...

However, I can't fault the attitude of the Hounslow NHS professionals - they ran weekly diabetes education sessions, various courses & have a support group. Trouble is, they accept DUK's false diet information. I know other areas have much less support.
Click to expand...

By my thinking that is a diversity in care - I presume you were commenting on the fact that the diet prescribed is the same across the country - I was commenting that we have no such support groups and care in my pct as you have in Hounslow - so that makes it diverse as not everyone is offered the same :D
 
'pipstick' I thought you were on here to gather anecdotes, yet here you are advocating T2s not testing?

I wished you good luck and hoped your quest would help your patients. I can't believe, after hearing everyones response to you that you 'still' think you're in the right.

I'm T2. I was sent home with hardly any guidance, with a fasting glucose test result of 19.
I was lucky, my DN gave me a tester and strips straight away, and it is their policy to supply them when needed. But, I know there are alot of people on here who have to fight for them.

Of course we have to test. How on earth would we know how to keep our sugar where (we're told to keep it?) And, when I was struggling to get my diet right: what foods spiked my sugar, what foods didn't, having to experiment with foods, which took a long time, before I achieved my suitable diabetic eating pattern, and it's hard work, I certainly wouldn't have been able to do this without the help of testing. It's a 'must', and should be regarded as such.

Even now, after 5 years I sometimes still feel I have to test, if I feel ill or I've tried new foods, etc.

T2s who are not on insulin, have to be very careful because like me, the danger is there, short term and long term of having high sugar levels. Testing is our tool, a necessary one to protect ourselves.

Helena
 
thank you everyone for the really interesting points you have highlighted. I am newly diagnosed, and 2 friends who have had T2 for a few years advised me to get my own meter. It seems that the 'professional' opinion is 'take control of your diabetes yet we need to control the checks' (if that makes sense)? This came up at the recent Desmond course, and the two professionals were saying testing isn't neccesary, use diet, excercise and medication (if needed) to control your symptoms. Most of us 'delegates' felt that we couldn't achieve that without knowing how the changes we make are affecting our symptom control. The HP's quoted people who were still testing two or three times a day even when the blood glucose levels were ok and had been for some time. I think they make too many assumptions that patients are panicking, or over-reacting, and this is reflected in 'too frequent' finger prick tests. Well, I think it's natural to feel worried, concerned, or even 'panicky' when you have just been given this potentially life-threatening long-term condition. I also think it's natural to want to take control of one's life, and that includes managing diabetes so it's not controlling your life. For me, testing has helped motivate me to stick to my treatment when I can see the levels reducing as a result of what I am doing. Education includes being given up to date accurate information ans support while one learns. It would be like trying to teach bakers how to bake without giving them the means to test oven temperatures and how variations in recipies affect the outcome of the finished product. (How come it always end up being a food metaphor with me?) :)

I think most people will reduce the frequency of testing when they feel more confident about the varables that can affect their blood glucose levels. And how can they gain confidence if they aren't allowed to test?

I hope that wasn't too garbled, but it's late here! LOL
The Desmond course was very good though, in that the HP's gave us a lot of information about what diabetes is and how it affects people. They also gave us lots of information about carbs, fats and sugars in foods, and to check labels. I remember years ago people with diabetes had a very strict regime of diet and medication, and really were left to adhere to it without question. And being labelled 'difficult' if their symptoms did not improve.
 
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