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New diagnosis Type2 information leaflets

Tony450

Newbie
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3
Hello,

I am a GP currently undertaking a post-graduate diploma in diabetes. One of my current projects is to create a new information leaflet for patients newly diagnosed with Type 2 diabetes.
I thought this forum would be a great place to ask for opinions :- what information would you consider to be important on a leaflet given to you at diagnosis to take home with you?

Hope you're all having a good week
Thanks in advance,
Tony
 
Dietary information regarding carbs etc. List of common meds, functions and possible side effects. DVLA info. Links to Diabetes.co.uk. NHS direct phone number. List benefits of exercise. Hypo warning signs. Complications to look out for. If self testing BG, what the numbers mean, what's too low/high etc. Importantly, not all doom and gloom. Add that a normal healthy life still possible.


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Hi I think a calm sensible talk about all the things you can do {most GP's will not issue a monitor for type 2 and tell you that having it tested every 3 6 or 12 months is enough, it is not there eyesight or limbs at risk most of the companys send GP's free monitors these could be given to newly diagnosed with explanations that they will have to buy there own strips and lancets which if brought from the manufactuer will be signifinctly cheaper than from a chemist} At my GP's there is confusion as one Dr will give type 2 strips while another will not the best bit of advice is--------- Don't panic -----------
 
Low Carb Info!
Low Carb Info!
Low Carb Info!
Low Carb Info!
Low Carb Info!
Low Carb Info!
Low Carb Info!
Low Carb Info!

:-)
 
Information about when you should contact your doctor. Though I think it depends Tony on whether you are going to write this on the basis of the current NHS guidelines or on the basis of what diabetics with experience have found to be helpful - they are often not the same thing when it comes to lots of points from testing to low carbing!
 
Hi.

Self control health record

The facts of diabetes type 2

Types of diets which are known to help

NHS cost limits for type 2

Why the need for self bg testing.

___________________


Information leaflet are usually treated as junk mail. Therefore the main message should be highlighted with a memorable photo link as a header image.

Roy. :)
 
Hi Tony and welcome to the forum.


You could start by reading this link viewtopic.php?f=39&t=26870 which is posted to any new member here on the forum, Im sure you could modify it slightly so it could be offered to every newly diagnosed diabetic via their GP's.


My apologies for the following rant LOL

The biggest problem faced today by newly diagnosed diabetics of course is the reluctance of GP's to prescribe blood glucose (BG) testing monitors to non insulin using T2's. Its a bit like driving a car without a speedo, how can you know how fast you are driving with out one, you are not told to rely on random speed checks to tell you how fast you are driving are you?

The HbA1c is fine for giving an average of BG levels over the last few months but it can not show how and when BG levels are spiking to high levels. Only by knowing what carbs do to our BG levels can we regulate our carb intake to a level that will keep our BG within the NICE guidelines. No one can guess what carbs will do to their BG, this can only be done by taking a before meal reading and another 2 hours postprandial reading. If the postprandial reading is not close to the pre meal reading then the only alternative is either to increase meds or eat fewer carbs.

I have been a T2 diabetic for 4 years, I was diagnosed after presenting at A&E suffering with an SVT and an HbA1c of 12.6% and after having my heart stopped and restarted in rhythm was kept in overnight and put straight on insulin. Over the following 7 or 8 months I lost 4 stone in weight and after 12 months was able to stop insulin treatment completely. Now 4 years later I am over 5 stone lighter than I was at diagnosis and have never had an HbA1c outside the 5% since 3 months after diagnosis.

This is of course purely anecdotal evidence but hundreds if not thousands of members here have similar stories about gaining and maintaining good control though careful monitoring of their bg and carb control. I currently eat somewhere between 120g and 160g of carbs a day and rarely test my bg any more as I now know what I can eat and in what portions to keep my bg stable.

BG testing is IMHO the most important part of treatment for T2's but it has to be done correctly in order to regulate carbohydrate intake not just random fasting readings which are of little or no help.


Regards
$id

Current A1c 5.1% as of Jan 2013 (1000mg Metformin b/d & diet controlled))
 
Well said Sid :thumbup: :clap: :D

My bit of "anecdotal evidence":

I'm Type 2. I eat Atkins, carbs usually less than 50g daily, I have excellent BP and cholesterol and my BG readings are hardly ever outside the non-diabetic range - unless I up my carb intake. Last HbA1c - 5.4

Our "Info for the Newly-Diagnosed" is the sort of info I wish I'd been given on diagnosis - instead of being told I was going to die early, blind, on dialysis and with no feet! :shock:

New Type 2s need to be encouraged to take an interest in their condition and to be educated in self-management - not just to be given Metformin, 40mg of statins, BP meds and told to get on with it.

Meters are essential. It's cheaper to give me strips than to amputate my feet and give me a new kidney.

Sorry - off the point and a bit of a rant. But to be honest, most HCPs seem to know less about my condition than I do!

Viv 8)

PS a brief reading list - Jenny Ruhl, Richard Bernstein, Vernon & Eberstein Atkins Diabetes Revolution come to mind.
 
I really wish people would not keep coming up with the 'blind, amputee, new kidney' bit on these threads.

It is almost like a mantra of doom. These things do of course happen sometimes, but we are FAR more likely to die of heart disease or attacks than any of those things. However, I guess that does not have the same dramatic value..

So newbies come on these boards, as I once did, and get scared half to death, possibly putting them off even trying to gain control.
 
Re: New diagnosis information leaflets

Hi. Thanks for asking for suggestions for new T2 leaflet info. My points:

1) As others have said talk about low carbs and low-GI carbs. Don't say' have a normal, healthy diet' as that's for normal, healthy people.
2) Don't overdo the usual NHS stuff about statins, low-fat and low-salt as carbs are the main issue for us.
3) If explaining what T2 is bear in mind that around 20% of those diagnosed as T2 are not insulin resistant but have deficient pancreas activity etc so avoid assuming by default that a T2 is overweight or whatever.
4) Perhaps include links to the very good NICE Diabetes Pathways web pages.
5) Talk about default annual diabetes reviews and what happens i.e. blood and urine tests and review, retinopathy, feet checks. Talk about HBa1C trends and the need for meds if diet doesn't work above certain levels. Explain how the annual appointment is booked and how the patient obtains blood test forms for tests BEFORE the review.
6) Perhaps even add a note that if you have a meter, are young, have a low-carb diet and figures still rapidly go into the teens contact the surgery for an interim review (with LADA in mind) as mis-diagnosis is quite common.
 
Hi, as a newbie, I was very shook up and prolly still am, but when I read the link that Sid has mentioned it was like a cloud lifting from me, made me feel like I understood what was happening to me, the doctors sure didn't explain anything to me, in fact all I was told at a&e was how I was a ticking bomb and how I could slip into a coma any moment, I was literally feeling on the edge of death until I read that, so thanks whoever gave me the link, sorry if I'm on a tangent..... Basically, I agree with Sid :)
 
Caterham said:
I really wish people would not keep coming up with the 'blind, amputee, new kidney' bit on these threads.

It is almost like a mantra of doom. These things do of course happen sometimes, but we are FAR more likely to die of heart disease or attacks than any of those things. However, I guess that does not have the same dramatic value..

So newbies come on these boards, as I once did, and get scared half to death, possibly putting them off even trying to gain control.

You missed my point, Caterham. That's exactly what my GP "diabetes specialist" said to me on diagnosis - and it should stop! I control my blood glucose levels very well, and I have every intention of going to my grave intact! Type 2 may be progressive in some cases, but I think it is perfectly possible to control even the progression. I have often said so on this forum.

Viv 8)
 
Hi guys, thanks so much for the responses - there's plenty for me to look at there this weekend!

I think I want the leaflet to be designed to give to people after the first diagnosis encounter... A lot can be covered in a short space of time: usually focussing on what diabetes is, why it is important to reverse some of the changes happening (without being doomy and gloomy!), the beginnings of dietry advice etc... Our time is unfortunately limited, but patients are enrolled onto the local X-Pert program for more in depth education.

So I suppose I see the leaflet as being there to help organise the information given in the first meeting, something to look at and reflect on, not a manual for T2DM. Do you think this would have been helpful to you in the time between first diagnosis and the follow-up appointment / X-pert Program? The self-monitoring is obviously a contentious issue, but probably not something that would come up in most initial encounters before seeing the dietician.

Maybe leaflets are less relevant these days to those who are internet savvy, but our population in East London is probably less connected than the average person on Diabetes.co.uk

I'm currently thinking key points on what diabetes is with good links to online info may be best?
I do think it is important to fully inform what the consequences of poorly controlled diabetes can be, and even the increased cardiovascular in relatively well controlled T2DM, although I appreciate that this needs to be put in a non doom and gloom way, and I don't think the blind amputee with a kidney transplant approach is at all helpful- was this scare tactics?!


Thanks again for your time, further comments welcome!
 
Hello again Tony, when I was diagnosed I was given a bunch of leaflets which I personally found quite useful, I also read everything I could both on the internet and in books that I bought as I was very scared and wanted to be as pro active in my care as I could.

Re the EXPERT course, is that now available in all areas?

As when I was diagnosed 4 years back there was only DAFNE and DESMOND in my area and as I was a T2 on insulin (at that time) I didnt fit into either camp :( . In fact I slipped under the diabetes care radar for several months after diagnosis, but that as they say is another story :lol: There does seem to be large differences in the care and number and types of courses offered by different areas/Trusts.

Last words: The more information that is available and given to newly diagnosed diabetics the better IMHO. For me at was a very scary time which motivated me to self help but not everyone is motivated by fear as I was.
 
Hi Tony

Yes, I'm pretty sure the "doom and gloom" approach was scare tactics, but it was a classic example of "one-size-fits-all" rather than choosing the appropriate approach for each patient. In fairness, the DM specialist GP hardly ever sees me, so doesn't know me well. Rather than seeing the specialist at diabetes review time I see the GP I normally go to, who is very used to me and has even been known to tell me to "go away and look it up on the internet" :lol: That was lumbar spinal stenosis.

Our practice nurse, who does the practical side of the annual review, is very clued up on Type 2 despite not being called a DSN. I've never seen the DSN who covers our area - I think our nurse daredn't let me at him! :lol: I did see a dietitian, in a group counselling session when I had to bite my tongue several times because of all the other people in the room - I didn't want to confuse them by arguing with her, and she was of course toeing the party line. I get excellent care in my practice - many others do not.

If I'd followed the dietitian's advice I'd never have lost 60lbs (60 more to go!), and my HbA1c would probably still be in the 6s or even higher.

I think that a matter-of-fact, reassuring approach in the leaflet is essential; I don't consider Type 2 a disease, it's more a metabolic condition. It is not the end of the world, and I fully intend to enjoy my allotted life span, even if I've had to tweak my lifestyle to accommodate Type 2. I don't metabolize carbohydrates well, so I don't eat them in any quantity.

A note about how insulin resistance can make you fat would help avoid a lot of the self-blame and self-disgust that the newly-diagnosed often feel. Overweight/obese Type 2s are often made to feel like pariahs. I don't know how the thin ones feel - about 20% of us are skinny at diagnosis.

In my experience reading "Newbie" posts on this site, many of the newly-diagnosed don't seem to know what a carbohydrate is; I'm not sure they cover that in schools any more. Many people are told to "avoid sugars" but are told nothing about avoiding fast-acting carbs and certain fruits and veg. So a bit of education in the food groups, and in the Glycaemic Index, and how they relate to one's blood glucose, would be a good idea.

A friend's husband was diagnosed at the same time as me, and we often compare notes. The other day he had breakfasted on rice crispies and a banana, as recommended by the dietitian (though in fairness I don't know whether she said "together"). That combination would have put my BGs into the lower teens, even 2 hours later. Then again he only does random tests, twice weekly. So how would he know?

Oh dear, I could write a book on this subject! I'll stop rambling on - but do PM me if you want to ask about anything. It's very good to have an HCP interested in what we think. :D

Viv 8)

PS I agree with Sid, especially about the self-motivation.
 
Thanks Sid. I'm not sure of the availability of the X-Pert program nationwide, but we are lucky to have it here locally (and in multiple languages!) along with DESMOND, and in fact the dietician also visits the surgery monthly which is useful if there is a wait to start the chosen program.

One of the problems that I am aware of at the moment is that there have been a few non-attenders to these education sessions recently, and this might be influencing what I think should be in the leaflet... The complications are serious, and early education is precious opportunity (that as you say may not even be available everywhere). Maybe the leaflet should simply plug the courses!

Just seen your post Viv - I like your view of diabetes as not metabolising carbohydrates well - thank you for your help!
 
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