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Something MUST be done!!!!

I think, Unbeliever, that I am exceptionally lucky with where I am! I am just across the Border in the Scottish Borders and clearly, from reading the experiences of others, am receiving a very high standard of care. 99% of my care is at the Hospital although my GP has called me in over high blood pressure (before I made an appointment as recommended at the hospital) and any time I am seeing my GP I am always asked about my readings etc.

I am not naive enough to believe everyone receives perfect care but DUK's stance really annoys me. I appreciate they are partly there to challenge the NHS, BMA and Government, and God knows someone has to at times, but I don't like the way they do it. I did think up until a short time ago that I would use my running to raise money for DUK but I wouldn't now. I would rather it went to the local hospital and surgery.

Finally, I will have a little gripe about the NHS and wonder if anyone else has experienced this? Around 18 months ago after my six month check up I tried to make my next appointment which I always do. I was told that I could no longer do this and that an appointment would be made for me. What I'm finding is that the hospital's idea of six months differs from mine and I am being pushed out 2-3 weeks every six months! I should be there on the 30th of this month but haven't had my appointment through yet which means at least three weeks to give me time to get my blood taken. No doubt I will have to phone them. Anyone else experiencing this? Could it be cost cutting?
 
I certainly wasn't accusing you of maivete {sorry no accents on his keyboard} and i was not rying to defend DUK , I think they have oo much power and influence and alhough i could be arued hat this is a good thing for dianeics I do not agree. Its as if having diabetes automatically places you under he dictaorship of DUK who then speaks for you to the government and the nation wihout
consulting you. My mantra is "I didn't vote for DUK". However I am a reaist and ust accept that it is all ppolitics.

Joining DUK was suggesed o me by my doctor on diagnosis. When I changed Practices {unwillingly} the first docor I me was horrified hat I tested my bg regularly and qued {verbaim} DUK's lates pronouncement on he subject.! Tail wagging the dog?

Yes care is a postcode lottery of course.

Regarding your appointments could well be cost cutting but maybe this is necessary. It is oneway of coping wih an increase in paient numbers wihout any corresponding increase in Doctors etc.

The only problem I have ever had wih appts was when the hospital employed an outside agency to deal with outgoing mail.
This led o uer confusion and has been stopped. the same hing happened to friends in other parts of the country.

An increase in patient numbers sounds more likely to me.
 
Unbeliever said:
Yes care is a postcode lottery of course.

I do agree with this. I am fortunate indeed to be in an area that appears to have some of the best diabetic care in the country. A local surgery came top of a recent poll in the care of diabetics and the 9 annual tests. It seems to have 'rubbed off' across the county, as even though I am not at that particular practice, I do still get quite good care. My GP is usually available as and when required, as is my DSN, and my GP endorses a low carb diet. I wish this standard that appears to be among the best around in the UK could be applied nationwide.

I can't comment on hospital care, as thankfully thus far it has not been required.
 
Had an interesting chat with the (rather senior looking) optometrist that did my retina scan today.

When he asked "and you're just taking metformin aren't you" and I told him "no I'm diet only these days", he was at first slightly disbelieving that I could have good control on diet only "how long have you been off the metformin? what did your last hospital fasting blood test say?". I don't think that well-controlled diabetics are something that he encounters very often...

In the end I think he was impressed. Nice guy.
 
Well conrolled diabetics suffering from retinopathy requiring continuous treatment are even rarer I believe , I have the dubious honour of being one .
It is almost ludicrous o see the reaction of student opthalmologists when confronted by such an odd specimen as myself.

They are still being taugh hat complications almost can't ever occur in anyone with an HBA1C of under seven or at the very most any small problems will clear up almost immediately. They can't cope with my HBA1C of 6. Don't know what they will do if it goes lowwer as I ope and intend. They then start questioing me about lipids and triglyerides etc.
I hate to see heir little faces crumple when they realise that not everyone fits ithe model they were given in medical school.
Its almost like telling them that there is no Santa.
I wonder how they would cope wih someone with non-diabeic levels ? I hope You never find out Borofergie!

I t
 
I don't feel that DUK has the best interests of people with diabetes at heart. If they did, they would at least make it known that many people achieve normal BG by low carbing, instead of just parroting NHS policy. Nor do I believe that a charity which accepts money from cereal manufacturers is unbiased on the low carb issue.

I don't know how many patients in my doctor's practice have T2DM but he told me that my Hb1Ac was the worst, that I'm the only low carber and the only person he's known get down to 6.5% from 13%. I do suspect that many people with diabetes feel it's job done if they take their prescribed meds. Also, that being more proactive about their diabetes can be beyond their capabilities.

In Why We Get Fat, Gary Taubes shows that it's usually the poorer people who are fat. Often they can't afford to buy good food, or can't cook. This was illustrated by Jamie Oliver's Ministry of Food series. That's an inditement on our society, surely ?

I'm a pretty strong-minded stubborn person yet I've been reduced to tears by nurses. There is the attitude that diabetes is self-inflicted and that we're wasting valuable NHS resources and with that kind of snotty attitude I can certainly see why people might want to avoid engaging with healthcare professionals.
 
Scardoc, I'm glad you are getting good NHS care and managing well on a normal diet
Scardoc said:
I eat a hell of a lot of carbs but I run a hell of a lot too so I need to. My HbA1c has always been low 6's and I am firmly in the camp that cutting down sugar, eating a healthy balanced diet and exercising will keep you right.

However, I note you are a type 1 on insulin. That's not a criticism, but obviously the downsides of having to use insulin also give rise to the upside that you CAN eat a hell of a lot of carbs and keep a low HbA1c. A T2 can't do that, no matter HOW far they run. We also generally recognise that type 1s tend to get far more experienced and better educated support than T2s get on diagnosis. Indeed, it's only when T2s go down the slippery slope of NHS advice and end up on insulin that they too start to get good advice.

[mod edit: reply to a comment that has been removed]
 
Scardoc wrote:

I would love to see figures published showing how many of the 24K "avoidable deaths" per year are as a direct result of NHS failings and how many are as a direct result of people not looking after their condition. It's probably impossible to measure.

There is some truth in this. I know of at least one practise-based diabetic specialist nurse who gets less than 45% response when she sends out appointment letters to her patients for their annual checks. If people don't even let the HCPs see how they are doing, by testing them, complications are bound to occur - and needless deaths.

A thought has just occured to me - I'll ask what happens when the non-attenders prescriptions need renewing!

By the way, Scardoc - I have never had the NHS targets for diabetic patients for HbA1c, blood pressure and cholesterol mentioned to me at the surgery - what are they, please? I know the cholesterol/blood lipid ones, courtesy of Noblehead - but it would be useful to see them all together. Are these the QOF ones?

Viv 8)
 
Grazer said:
Scardoc, I'm glad you are getting good NHS care and managing well on a normal diet
Scardoc said:
I eat a hell of a lot of carbs but I run a hell of a lot too so I need to. My HbA1c has always been low 6's and I am firmly in the camp that cutting down sugar, eating a healthy balanced diet and exercising will keep you right.

However, I note you are a type 1 on insulin. That's not a criticism, but obviously the downsides of having to use insulin also give rise to the upside that you CAN eat a hell of a lot of carbs and keep a low HbA1c. A T2 can't do that, no matter HOW far they run. We also generally recognise that type 1s tend to get far more experienced and better educated support than T2s get on diagnosis. Indeed, it's only when T2s go down the slippery slope of NHS advice and end up on insulin that they too start to get good advice.

[mod edit: reply to a comment that has been removed]

Yes meant to comment on this yesterday and got distracted.

First agree with Grazer on the T1 insulin stuff. Its great you can eat a load of carbs but please remember a T2's carb tolerance is pretty much fixed by how much function they have left. If like me you are diet only it wouldn't matter how much exercise I did after a meal. If I consumed too many carbs I would spike dangerously and have no controlling mechanism to counter the spike. That fact is what being a diet only T2 is all about and in exactly the same way a T1 has to gain control of the levels through a correct insulin regime a T2 has to gain control of their levels by strictly adhering to a personal carb regime. Regardless of Type the issue of control is the key thing.

Scardoc I do blame the NHS. I blame its dieticians who recommend T2's adopt a dietary regime that can shorten their lives by 15 years, I blame their inertia, bureaucracy, their inability to update themselves about low carb despite other Western health services adopting it but most of all I blame them for lying to the majority of T2's about the seriousness of their condition and the pervasive "don't worry" attitude. Despite all of this roughly two thirds of T2's however obese and however ill informed and however little help they receive do meet the 7.5% HbA1c target which apparently should limit complications and therefore NHS costs. Only roughly one quarter of T1's achieve the same thing. Again that is just meant as a statement of fact taken from the latest 2009-10 UK diabetes audit and not by any means an insult to you or other T1's.

I really do object and find it offensive to be told that any T2 self inflicted their condition and should therefore be blamed. As a T1 you know the danger of insulin is that it can cause you to put on weight. If you put on weight then you need more insulin and therefore you put on more weight. The whole thing can spiral out of control. In my own case I come from an educated family that used the 5 a day guidelines, never ate puddings except on rare occasions, never had sweets, rarely ate chocolate, had a takeaway about once a month, cooked all our food from fresh ingredients and did a reasonable amount of exercise. I did EVERYTHING I was told was a healthy way to eat yet ended up putting weight on. My interpretation is that my diet for whatever reason required me to produce a lot of insulin which made me gain weight, which gave me insulin resistance, which made me produce more insulin, which made me gain weight... I never even got to an obese BMI level prior to my T2 diagnosis and btw on that supposedly healthy diet my cholesterol went sky high as did my blood pressure. Now in my case perhaps I should have taken notice that I had a T1 son, a T1.5 nephew, a couple of T2 aunts , and a T1.5 grandfather but I'm an average "gp averse" male and run my own business with all the stress and urgency that entails so stupidly I ignored it. I don't entirely blame myself however as I did do the annual check up thing so it would have been nice if my gp had turned round and called me a fat b*****d and pointed out the db runs rife in my family but such is life.

So prior to making value judgements about the T2 community you should consider what I just said. Every T2 has their own personal story that got them to where they are today and YOU know nothing of their history so please stop judging us as it does no one any favours.
 
I've seen a lot of changes in diabetic care, both in treatment and how the treatment is provided... As the NHS/HCP's struggle to keep up with demand..

The reality in the main it's the diabetic that's generally there own worst enemy not the HCP's,

If we look at different things introduced by the NHS/Government to improve the out come for the diabetic!

GP lead care... Well if you'd been diabetic when we all trotted off to the hospital clinic and the consultant you would see the benefit in this, as it actually does give better access to diabetic care.. Hospital clinic's were packed to the brim and getting appointments were horrific and few and far in between!

GP Incentives... The incentive carrot was brought in not for the GP benefit but because somehow they had to entice the diabetic into clinic, because they weren't bothering!

My hospital did in the late 90's tried a drop in clinic for diabetic's but ending closing it down, because no-body used it! They tried a 'phone-in' service but again, ensuring that the phone was manned, wasn't cost effective having a DSN twiddling her thumbs for a couple of hours just in case somebody phoned... So now e-mail access, and phone when needed if somebody is available it be answered! Because as well as various clinic's including out-reach clinic's, ward rounds etc everybody pretty busy!

Eye Screening was brought in purely because diabetic's weren't doing what they were supposed to be doing? That was ensuring that they went for a yearly Eye Test at their opticians! The lack of interest of the diabetic to look after their eyesight themselves, the NHS has been enforced to do something to counter react the impact by implementing an expensive screening program! If this actually saves money in the long run by picking up problems early, how many diabetic's didn't bother to look after their eyes! after all there's nothing in those photo's that can't be picked up by a simple Eye Check by an optician!

Dietary side..

It isn't what they say but again more down to two factors of the diabetic, firstly how the diabetic interprets information being given but also which is probably the most damaging one, is whether the diabetic has any intention in actually following information given!

What we have to remember, when it comes to diabetics, we (on the forum) are pretty pro-active about our own diabetes, determined to do the best we can to take control of our diabetes so we lower the risk factors of long term complications to our best advantage! If every diabetic the HCP saw were like us... Then the world of diabetes would be a lot different indeed but alas the HCP see's the 'Reality' of the diabetic world, where those like us are a very small minority! So they have to come up with ways and means to not only to get the diabetic in clinic, but get the diabetic to take control of their condition!

Which when it comes down to dietary advice, yes they work with dietary advice based around a normal healthy diet, because they know the difficulties and reluctance for the majority of diabetics to follow this! Can't you imagine what would happen when you tell an already reluctant patient that you'll going to turn their diet upside down for their best interest!

I know what happens, you end up with 3 groups, the first group and the biggest, will just stick their head further into the sand, the second much smaller group, will be so shocked and scared that they take the advice on board. The you get the 3rd group a very small group, who come from the second group, who can actually find the motivation to follow the new regime for any length of time! As this is what happens with currant advice given!

That's the sad fact about the diabetic world... The HCP do their best but are constantly let down by the diabetic themselves!

Now I know somebody who will blame the advice given to their husband by his team, why he's suffer major complications now... But then say in the next breath,Oh clinic he didn't bother going half the time, said they didn't do anything!
 
jopar said:

Jopar... I take on board your point reference individuals not doing as they have been directed... we can not after all control what every person does in their day to day life... That doesn't however alter the fact that better advice and information could be given.. I don't think that anyone here is arguing that by changing the advice we are going to solve the whole problem.. however what we can do is give people the information they need to make informed choices about their lives and their treatment.
 
jopar said:
Which when it comes down to dietary advice, yes they work with dietary advice based around a normal healthy diet, because they know the difficulties and reluctance for the majority of diabetics to follow this! Can't you imagine what would happen when you tell an already reluctant patient that you'll going to turn their diet upside down for their best interest!

The diet they promote is neither "normal" or healthy for a "diabetic". How can you say that people are reluctant when they are actively discouraged from following a reduced-carb diet? I am convinced that most people will do what's best for them given enough education and support. If they choose not to help themselves under those conditions, then I'm afraid that they deserve whatever complications they have coming.

jopar said:
That's the sad fact about the diabetic world... The HCP do their best but are constantly let down by the diabetic themselves!

You just said that HCPs deliberately give out the wrong dietary advice because of the perceived "reluctance for the majority of diabetics to follow this [advice]!". How is following this wrong advice a failing of the patient?

Just look at the number of newbie posts in which people say "I don't understand this carbohydrate thing, because my doctor/nurse told me that I had to eat carbs with every meal".
 
jopar said:
Can't you imagine what would happen when you tell an already reluctant patient that you'll going to turn their diet upside down for their best interest!

Yes I can imagine - I can imagine them, as I would have, saying "thanks very much, now I can make an informed decision about what I will do"

Jopar, we've been down this route with you so many times before. This entire thread is here because the overwhelming majority of T2s here vouch for the fact that we DON'T get good advice (or any!) regardless of the fact that insulin dependant diabetics might.
So the thread isn't about debating wether or not the NHS gives good advice; it accepts that for T2s it DOESN'T and is discussing what to do about it.
 
Sid earlier on this thread you said

Sid Bonkers said:
I believe that the NHS diet as it was advised to me is fine

You have said to me on other threads this morning you started low carbing at 60g when you were first diagnosed but now do around 100g a day. Where in any dietary guidelines that most PCT's give the newly diagnosed or in the standard UK dietary recommendations or in the latest UK 2012 position statement does it say that low carb message?

You can see lots of PCT dietary examples earlier in this thread as Denise kindly posted a load. I'll also include her DUK links as well

))Denise(( said:

The diet you were advised to do does sound absolutely fine but it sounds nothing like the one most members get advised to do if you read other peoples posts and experiences which is why we feel change is needed. Perhaps you could detail how you CAN do a 60g or latterly 100g regime and reconcile that with any current UK dietary position?

If you can show us how to do that then we can point that out to the likes of DUK and DCUK as it would be brilliant to be able to show them that validated UK low carb position and we could add how it can be achieved to the position statement we are discussing on this thread.
 
Pneu said:
jopar said:

Jopar... I take on board your point reference individuals not doing as they have been directed... we can not after all control what every person does in their day to day life... That doesn't however alter the fact that better advice and information could be given.. I don't think that anyone here is arguing that by changing the advice we are going to solve the whole problem.. however what we can do is give people the information they need to make informed choices about their lives and their treatment.

I actually think jopars post was spot on, the vast majority of diabetics dont even follow the advice given by the NHS now, if you change that advice to low carb then IMO fewer people still will take it on board, the motivation has to come from the individual and all to frequently that only happens after complications set in and even then not always.

My wife worked for a surveyor many years ago whos wife had triple bypass heart surgery and was told to quit smoking, did she? No she started again on the drive home and carried on smoking 20 a day like nothing had happened.

I met a guy when I was fishing regularly who was on dialysis he had been waiting for a new kidney for three years, he had to be very careful with everything he ate and drank and was extremely strict with his resolve , I heard a couple of years ago that he had had his transplant and almost immediately gone out on the lash, picking up his old lifestyle like nothing had happened.

We know the story of George Best I'm sure, but we only know his tale because he was famous there are million just like him that seemingly to everyone else have a death wish but can do nothing to prevent the inevitable.

You can only make someone aware of the risks, you cant look over their shoulders for the rest of their lives.
 
xyzzy said:
Sid earlier on this thread you said

Sid Bonkers said:
I believe that the NHS diet as it was advised to me is fine

You have said to me on other threads this morning you started low carbing at 60g when you were first diagnosed but now do around 100g a day. Where in any dietary guidelines that most PCT's give the newly diagnosed or in the standard UK dietary recommendations or in the latest UK 2012 position statement does it say that low carb message?

Well at risk of being accused of being a troll, Here we go:

I was given a couple of leaflets about lifestyle and diet that said the usual base you diet around carbs, BUT, I was told to cut down drastically on what I eat, I get bored of saying this, but I was told only eat a portion of anything that would comfortably fit in my hand and to substitute white bread for wholegrain, white rice for basmatti etc etc high GI for medium/low GI. I was laying in a hospital bed at time contemplating my first insulin injection so the message sank in. I still eat carbs with virtually every meal and am very well controlled thank you very much :D

Later I joined this forum and learned more about cutting down on carbs, which I had already done through the smaller portions I was eating but at that point I did cut down on carbs a little further, I also got lots of other useful advice here that helped me but we're not talking about the forum here are we?

About 6 months down the road and I had lost around 3 stones maybe and I got an appointment with a dietician who advised me that my dietary intake was fine but she thought I should include more oily fish which I didnt as I dont like oily fish. At that meeting after inspecting my food diary she told me that "low carb was the way to go".

So what pat of the advice I was given was incorrect?
 
You can only make someone aware of the risks, you cant look over their shoulders for the rest of their lives.

Spot On Sid!!! Completely agree.

And thats what this thread is about. Making someone aware of the risks, and informing them of how to reduce their risk.

Not downplaying or ignoring the risk and giving advice which will make the diabetes worse.
 
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