What would be your ideal care model for the NHS with your Type 2 Diabetes?

tim2000s

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Given the conversation I had with Partha Kar at #DPC2015 today, we have a huge concentration of T2 diabetics in this forum. Let's work out what the model of care we would like to see is and get it across to the NHS, and let them work out how to implement it. This is the thread to do so!
 
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britishpub

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It would help if:

1. GP's and Practice Nurses had better, more specialist training in a disease that is becoming more common.
2. Ditch the healthy plate advice, and inform patients correctly about how diet is extremely important, and how and what is turned into glucose by the body. The more education that is given, the more patients can make informed decisions.
3. Stop telling patients that Type 2 is progressive, and that their condition WILL deteriorate over time, and that they WILL end up Insulin dependent. Give patients the correct information, let them decide the course of action to follow, but overall give them hope that they may be able to control the disease themselves.
 
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jodysd6

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I'm not type 2 but going to follow this thread, I am attending a Technology Enabled Care Services conference next week and have signed up to attend a session presented by a CCG who are going to talk about their plans for integrated diabetes care and it would be interesting to see how what they think will be great for patients will compare to what patients think will be great for patients!
 
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JenniferW

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I'd have appreciated an intense level of support in the month or so following diagnosis, but them something more than I get now for the long-term. I'm not on any medication, and am only scheduled for annual testing - and a year's more than long enough to go off the rails! Frequent nudging would really help.
 
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Lamont D

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I do not have diabetes
I'm not type 2 but going to follow this thread, I am attending a Technology Enabled Care Services conference next week and have signed up to attend a session presented by a CCG who are going to talk about their plans for integrated diabetes care and it would be interesting to see how what they think will be great for patients will compare to what patients think will be great for patients!

Hi Jody,
The reason that this forum is so popular is because of the lack of proper understanding of T2 diabetes and other conditions like mine.
The government and NHS are not up to date with current proven methods of controlling the condition.
Why is it so popular?
Because it gives advice from diabetic patients to other diabetic patients who are struggling and in a total lack of understanding of what to do after first diagnosis or after getting nowhere with advice for doctors and dsns and even consultant specialists.
The advice is simple at first and those who take it on board usually see a difference within weeks the success rate is very good and you only have to read the stories of achievement.
There is only one real piece of advice that is crucial.

That is; reduce the things that raise your blood glucose levels!

Once you understand what keeps your blood glucose levels high, then you can start a plan of action around that by eating fewer carbs and sugar, do more exercise and use a meter to see how you are progressing and which foods you shouldn't eat!

Of course, everyone has different tastes and problems.
But low carb lifestyle seems to help other conditions.

Diabetes especially T2 is a condition mainly with diet, why not treat it that way!
 
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Tim55

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Ok - I'll throw my own ticking bomb into this debate.

I have an operational management background in chemical manufacture, and I was quite good at it, if I do say so myself.

Not unlike the human body, things on a chemical plant sometimes go slightly adrift - and the key is to first spot when things are not going exactly as they should, and then to get to the root of the problem causing the symptoms, as a basic rule, you ask "why?" at least 3 times and you keep on asking it until you have a definitive answer.

It seems to me the NHS does not do this with type 2 diabetes.

I have formed the distinct impression that " you are type 2 diabetic" is the accepted root problem, and therefore they launch into the accepted treatments, and the damaging advice on diet and the healthy plate.

The question should then be " and why are showing symptoms of type 2 diabetes?"

Answer - probably - "because you are insulin resistant"

That's 2 questions so far, the next one is "and why am I insulin resistant?"

Once that is answered - and only when that has been answered - the next question would be " and how do we address that problem?"

I think they leap to addressing the symptom, by going to Metformin, far too early in the analysis.

I also think every type 2 should be prescribed test strips and encouraged to self monitor, and not give out advice that "you do not need to test and you must NOT eat to your meter".

JMTC so far...
 
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donnellysdogs

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From my recent experience (although not a type 2).
All wards should have suitably knowledgeable nurses on their day and over night wards that know about insulin. And diabetic medicine and testing....
There are many type 2's on insulin and I would not want them to go through what I did 3 weeks ago.
Ie... Told I could take my normal insulin... They then put me on a sliding scale in addition for a one hour op!
Needless to say I could see my levels dropping and asked them to up the glucose. They insisted the sliding scale rules were to up my insulin drip. I begged 2 nurses not to do this. They came to collecte to walk to theatre and I was 3.7. I
asked them to sort out before walking me to theatre. They didn't. Last thing I remember was asking them to do another test on me and the anaethetist saying I was under 2.0 to the surgeon. I was off head and telling surgeon that he was going to kill me on the table..."

Obviously I have lived to tell the tale.

Medics, nurses, anaethetists in hospital must be given better diabetic training.

With the qtys of type 2's going on to insulin etc and increasing numbers of diabetic it is not acceptable that NHS Staff are not more aware of diabetes no matter what type you are.

My hubby also had to being in my own food as hospital could not cope with that.

The prescribing Doctor that came round the ward after my op had absolutely no idea at all of MDI. No idea that I could not tell he an exact amount of insulin that I take each injection... Had no appreciation that it would depend upon how much food I could eat or what my levels are.

As diabetes is increasing-so must the care teams knowledge in hospitals.

(Sorry -T1, but there are T2's on insulin as well).....
 
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Hiitsme

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I agree with @JenniferW
More information at diagnosis and having questions answered as time progresses
6 months or yearly is not enough at the beginning
Testing to be encouraged - not discouraged.
Accurate information about what effect carbs have on blood sugars and sensible advice on diet.
 
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Celeriac

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The NHS gives out crazy advice to people with diabetes.

Firstly, to eat carbohydrates which they know (or SHOULD know) become glucose in the body, thus raising blood glucose. Advising people to cut processed carbohydrates rather than stuff starchy carbs at every meal would save the NHS millions. Ancel Keys and his Diet-Heart Hypothesis should be consigned to the dustbin of history. Before oral medications, Type Twos were treated by low carb diet. It's disingenuous of the medical profession to say that low carb diets are the great unknown.

If you tell someone: " Your HbA1c is 13%" it means nothing to someone newly diagnosed who doesn't know what normal is. Show that person an infographic or a graph, it will sink in better.

The NHS tells patients not to do XYZ, but doesn't follow through with the reasoning behind that, often enough. Explanation Explanation Explanation !

It's not reassuring to stressed patients when the HCP goes off the deep end about amputations, for a minor problem. The patient IS taking the problem seriously, otherwise s/he wouldn't be there. Frightening and bullying patients into compliance is not a reasonable tactic.

Patients are often made to feel that their questions are unimportant. It should be easier for patients to ask them somehow and not get the standard NHS Direct 'Go to A&E' response or the Eat Well Plate rubbish.

IMO engaged patients are invested in their health, they are more likely to do well, so help them.

Second piece of crazy advice, is not to test blood glucose. If I hadn't tested my BG, I would be on insulin by now. Patients should be given the means to discover which foods spike their BG, and to find out whether they have the Dawn Phenomenon i.e. an early morning liver dump of glycogen which sends BG up. Patients with a meter, find out that exercise can help them lower BG. They see their efforts to eat low carb, rewarded with better BG numbers. Motivation. Better BG = fewer complications = saves the NHS money. Billions probably as in fewer drugs, fewer surgeries.

Patients are individuals not statistics. If studies say X people with diabetes get Y, that's a statistic not a given. Giving drugs with bad side effects to healthy people or people with impaired health on the basis that it MIGHT help them avoid a statistic they don't have, does seem bizarre to many patients. HCPs probably look more at Big Pharma marketing than studies. It's the Absolute Risk that matters not the massaged to look good figures.

The NHS demotivates patients with T2DM by telling them that they will inevitably get worse and end up on insulin, with complications, dying prematurely. That's not a certainty. Not if someone has good control of their BG. I know that ACCORD and UKPDS studies showed that good control didn't have much effect, but the NHS guidelines for BG are higher than those that people without diabetes have.

Secondly, any pursuit of good control which results in rollercoaster BG highs and lows is a bad thing for some bits of the body e.g. eyes. This happens particularly for people on insulin and could indicate that the NHS just doesn't train people how to use insulin properly perhaps.

Giving bad advice which conflicts with the reality that BG meters show us, really undermines the NHS. I think that's the first thing that needs to be done. To at least acknowledge that cutting carbs reduces BG for the majority of people with diabetes.








Sent from the Diabetes Forum App
 
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bigjohn9916

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text speak.
When first diagnosed I was in hospital for an infected foot ulcer. I was given a meter and and a few test strips and some leaflets, an insulin pen and instructed how to use them. told to keep my BG between 4 and 7, and, and the address of this forum, if I had any other queries. and that was it. Although they do sometimes ask how are your bg's when I go to have my dressing changed. as they are in the range they specified "that's ok carry on as you are"
So anything would be better than the nothing I have so far received from the NHS. I was given a referral to a dietitian but she was on leave and they said they would write to me when she returned (still waiting).
Although the best advice was the address of this forum as so far I have found an answer to all my questions. but it takes a lot of reading.
 
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dawnmc

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Thing is though, isn't this Cameron's (sorry to be political) idea of Big Society in action, that is other diabetics helping other diabetics. Its just unfortunate that Gp's haven't caught up yet.
 

Rudyard

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Type of diabetes
Type 2
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Tablets (oral)
I want to be treated like I'm NOT a problem... Even by a Doctor who is supposed to be the practice expert. I know the dangers of high bg levels and need help in bringing them down - NOT "You're at an age where you'll suffer an episode. I've seen it happen" I would go more often if I wasn't so bloody scared of sitting down with him.

I'd also like more than about 7 minutes time in the room... Where I don't feel rushed to get kicked out and where I feel I can ask questions, maybe see about other treatments.

I DO want to be a well controlled diabetic, I am TRYING to lose weight, take more exercise, and I DO eat healthily (I cook from scratch most days - I'm hitting the low carb trail with a vengeance, too... BUT I need someone who I at least feel is sympathetic to me...

Please, please, please... we want to be listened to and helped, not prescribed to - Low BG and lower BP are my targets too!
 
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Chook

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I want to be treated like I'm NOT a problem... Even by a Doctor who is supposed to be the practice expert. I know the dangers of high bg levels and need help in bringing them down - NOT "You're at an age where you'll suffer an episode. I've seen it happen" I would go more often if I wasn't so bloody scared of sitting down with him.

I'd also like more than about 7 minutes time in the room... Where I don't feel rushed to get kicked out and where I feel I can ask questions, maybe see about other treatments.

I DO want to be a well controlled diabetic, I am TRYING to lose weight, take more exercise, and I DO eat healthily (I cook from scratch most days - I'm hitting the low carb trail with a vengeance, too... BUT I need someone who I at least feel is sympathetic to me...

Please, please, please... we want to be listened to and helped, not prescribed to - Low BG and lower BP are my targets too!

That is EXACTLY how I feel when visiting my GP..... that is when they don't cancel my appointments with him at the very last minute after I've taken time off from work to fit in with his schedule. (Three times in four months.)

Luckily my DN is much better.
 
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Chook

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Personally I would like some sort of service where you could ring in for telephone assistance or advice manned by someone medically trained who REALLY understands diabetes including managing it with low carbing and regular testing.
 

SunnyExpat

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It would seem difficult to simply replace one model of car for all, with another model of care for all, as each individual's set of circumstances, and presentation of diabetic symptoms are different.

So
A package to include a targeted weigh loss, if required, as again, not all diabetics are overweight.
Exercise, and dietary advice specific to weight loss, if required.
Support for the Newcastle Diet.
Meters to be made available, (providing the patient doesn't simply sell them off in the afternoon on ebay, along with the monthly strips)
Individual advice on BG reduction, by diet, and medication, and reduction, or increase in medication after monthly, or other periods, tailored to suit individual needs, and circumstances.

Would we expect every GP to be specifically trained, or would we still expect them to follow a check sheet?
If we don't expect every GP in the country to be an expert, referral to a centre of excellence, and create these centres in every hospital?
 

Brunneria

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Perhaps a huge survey would be a good idea.

It would need to focus on type 2s who actually maintain good HbA1cs.
Questions like:
What do you eat?
What exercise do you take?
What meds are you on?
What support services are most important to you?

Although finding these ppl might be tricky. We are largely invisible to the nhs because they downgrade out appt frequencies and shunt us off the register...
 
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tim2000s

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Perhaps a huge survey would be a good idea.

It would need to focus on type 2s who actually maintain good HbA1cs.
Questions like:
What do you eat?
What exercise do you take?
What meds are you on?
What support services are most important to you?

Although finding these ppl might be tricky. We are largely invisible to the nhs because they downgrade out appt frequencies and shunt us off the register...
Great idea Brun. @Administrator , is this something you can facilitate and send out in your regular emails?
 

AndBreathe

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I've thought about this a bit, and clearly one model doesn't fit all, so whilst the current "standard" really is failing so many T2s, no other single way will be wholly successful either. Clearly some people want to be at the centre of their management and others prefer a led approach where they are given much more specific instruction, rather than choices.

I believe many of us had poor experiences at the point of diagnosis – whether by the up-front lecture of gloom and doom, or at the other end of the spectrum, a feeling of abandonment and left to fend for oneself.

I think there is some value to the diagnostic delivery being fairly brief, but then setting the scene for the next steps, and allowing the person a short while to do some thinking. That initial delivery must include a brief question from the HCP to find out if the person knows anything about diabetes (which can immediately help signpost how the person might receive their own news), and a message of “don’t panic”. Somehow in that initial diagnostic meeting the person also needs to leave with a bit of “homework” – although that really would take the form of some considerations they should be mulling over in the intervening period. Things like how involved the patient wants to be, how much effort they are willing to make, what the patient’s expectations are (if it’s a silver bullet, that needs to be addressed….). Obviously, that’s at the highest level, but from there a somewhat tailored approach could be formulated, from a menu of options/approaches, perhaps under general headings life: Diet, Exercise, Weight Management, Medication, Testing, Related Medical Conditions, Reviews.

Let’s face it; some patients simply aren’t open to change, and have no interest whatsoever in modifying their lifestyle, whereas others want to go the whole 9 yards. This forum tends to have more of the latter than the former sticking around, so we are not a typical group, I’d suggest.

A while ago I did some more developed thinking on this as I would love to have influenced the way diabetes is handled in my practise, but sadly there is no appetite for change in my practise the present. I have massive experience in Change, but sadly, I see so many approaches which are simply doomed to failure, do to poorly thought out (if thought out at all) starting points.

If I can be of assistance, please let me know.
 
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poshtotty

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Hi Jody,
The reason that this forum is so popular is because of the lack of proper understanding of T2 diabetes and other conditions like mine.
The government and NHS are not up to date with current proven methods of controlling the condition.


That is; reduce the things that raise your blood glucose levels!

I have been wanting to post for several days about my experience on the hospital ward following surgery at the start of this week, but haven't known where to post. Not wanting to rant,but rather share my experience, perhaps I could be forgiven for sharing here?

I was admitted for scheduled surgery under general anaesthetic and as it was noted on my records that I am T2, I was told I would be early on the list so that my bs didn't drop too low from fasting for too long.

I was actually 2nd on the list and was in the recovery room by 10.30 am and taken to the ward soon afterwards. Once I arrived on the ward I was encouraged to eat and drink and I replied that I'd brought my own snack which was in my overnight bag which had been placed out of my reach. Grrr! The nurse saw that it was a low carb nutty 9 bar and refused to let me eat it saying I could choke on the nuts and insisted I ate a sandwich with a cup of tea which she brought for me. All sandwiches were on white bread and I chose a cream cheese one, thinking it the lesser of all the evils on offer. I only ate one half of it, knowing it would spike me badly and low and behold when the same nurse came back an hour later my bs were 12.6. She then panicked and said we need to get your bs down. Please take your metformin now to lower your sugar levels. I said I didn't think metformin worked liked that but she said yes it did!

I despair and was glad I was only forced to eat one half of the ghastly sandwich!
 
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SunnyExpat

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I have been wanting to post for several days about my experience on the hospital ward following surgery at the start of this week, but haven't known where to post. Not wanting to rant,but rather share my experience, perhaps I could be forgiven for sharing here?

I was admitted for scheduled surgery under general anaesthetic and as it was noted on my records that I am T2, I was told I would be early on the list so that my bs didn't drop too low from fasting for too long.

I was actually 2nd on the list and was in the recovery room by 10.30 am and taken to the ward soon afterwards. Once I arrived on the ward I was encouraged to eat and drink and I replied that I'd brought my own snack which was in my overnight bag which had been placed out of my reach. Grrr! The nurse saw that it was a low carb nutty 9 bar and refused to let me eat it saying I could choke on the nuts and insisted I ate a sandwich with a cup of tea which she brought for me. All sandwiches were on white bread and I chose a cream cheese one, thinking it the lesser of all the evils on offer. I only ate one half of it, knowing it would spike me badly and low and behold when the same nurse came back an hour later my bs were 12.6. She then panicked and said we need to get your bs down. Please take your metformin now to lower your sugar levels. I said I didn't think metformin worked liked that but she said yes it did!

I despair and was glad I was only forced to eat one half of the ghastly sandwich!

At least next time you'll know not to take a bar with nuts in, and take in something easy to swallow after a general anesthetic.
Full marks to the nurse who was prepared to let you go low carb though, if you had taken a suitable snack.
We all live and learn, and that's a lesson for all of us I guess.
 
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