The Diabetes Education Network

[Stuboy]

Hi!

I've been invited to attend a conference with the DEN by my pump nurse on the 23rd June, to represent people with Type 1 diabetes. There is another person there also with diabetes representing people with Type 2.

Some info for you...

The Diabetes Education Network (DEN) was set up in 2003 (as the Type 1 Education Network) to support local diabetes teams in developing and delivering structured education for people with diabetes. The Network now represents over 400 individuals and 60 centres delivering type 1 programmes, and an increasing number involved in type 2 education.
...
The aim of the meeting is to explore from the clinical, educational and policy perspective how we can develop more appropriate services to support self management of those who live with diabetes. The outcome will be a report with some recommendations which will be published on the DEN website, and possibly as an article in a peer-reviewed journal.

So basically it looks like they are looking for idea's and ways to improve the standard of diabetes education in the UK!

So i'd like to know if anyone here has any thoughts, ideas or would like to share their experiences of their own diabetes education that I could pass on at the meeting.

This is hopfully a great opportunity to have an involvment with the development of Diabetes education in the UK!

Cheers
Stuart

 

[Iolanthe]

Yes tell them about importance of testing for type 1 and type 2 and that type2 should be able to get strips etc on the NHS as well :evil:

 

[humph]

I got an invite too. Went straight in the bin.

Just another PR stunt by the NHS, the don't listen, never have, never will. But at least they can say they have done something.

Better option would be to use the money to fund treatment and end post code lotteries for treatment.

 

[hanadr]

You could ask why there are NO courses offered in Reading. and probably a load of other places. AND ask why they are still anti reduced carb eating.

 

[Stuboy]

Im getting the feeling of just shear bitterness here...

This is a chance to pass on some helpful and apparently wanted opinions and ideas on how to move diabetes EDUCATION forward in the UK... This isn't about what is and isn't available on prescription.

I will mention about education courses being unavailable in certain areas.

I would be interested to hear about what people thought about courses they've attended and how they think things could be improved?

 

[Patch]

I don't want to start a debate here - but could you maybe ask them why the Healthcare Establishment is so vehemently against restricting carb intake as a way of controlling/lowering blood sugar? Even when faced with such compelling evidence?

Again - not trying to start a debate, and I know you may not feel comfortable asking this question, but I'd love to know what their response is.

Cheers,
-Pat.

 

[kegstore]

Stu, good luck with this! I have one serious concern that probably falls into the education category:

I am constantly amazed hearing about diabetics who don't know how to count carbs, because they've never been taught. Irrespective of individual opinions on how much carbohydrate you should or shouldn't eat, if you don't know fairly accurately the weight of those that you do consume, how can you possibly dose insulin correctly? I have a T1 friend in hospital at the moment, recovering from an amputation just below the knee, who has never heard of it in the 30 years since his original diagnosis. I suspect he is not alone.

And not wishing to get too bogged down, I think the inconsistent application of NICE policies between regional PCTs is frustrating for many. But it may not be the right forum for raising that though...

 

[Administrator]

Would anyone like to write a section on carb-counting for the site? We can get this checked and approved by independent experts and then put live... could help some people out.

Dan

 

[candyog]

hi i would be very grateful for any info about carb counting thanks

 

[Stuboy]

Thanks kegstore.

You have a point, learning HOW to carb count is very important i think. I dont think it's down to the education system to tell people what diet they should be on, ie, no-carb, reduced carb, high carb or a balanced diet... They should be there to teach you the affect of carbs so you can make up your own mind on which diet to use.

 

[iHs]

Carb counting is fairly easy to do, you don't need to be brains of Britain. Most food except fresh vegetables has the carb value clearly put on the labels. You don't really need a Collins Gem carb counter book, all you have got to do is use your eyes and have a look at the labelling lol.

It is working out insulin to carb ratios that puzzles most people. The 500 rule might work fairly well for pump users but for those on MDI (using a separate basal and bolus insulin) the calculations that the 500 rule gives out might not be at all acurate and so at the end of the day, they have got to use guesswork in calculating the correct bolus dose and just do loads of bg tests - pre meal and post meal and logging down of course the amount of carb that they have eaten for each meal. It is only by trial and error that everyone gets the hang of how to balance themselves out.

 

[kegstore]

In danger of veering seriously off-topic here...

Carb counting is fairly easy to do, you don't need to be brains of Britain. Most food except fresh vegetables has the carb value clearly put on the labels. You don't really need a Collins Gem carb counter book, all you have got to do is use your eyes and have a look at the labelling lol.

Indeed, but for those people who do not buy packaged food from a supermarket, conveniently (and sometimes incorrectly) labelled, the difficulty is often where to start. For example I've yet to discover a variety of potato fresh from the ground that is labelled with its carb content? I don't use a book because I know how to count already, but this is basic information that every (T1) diabetic should know from day 1?

It is working out insulin to carb ratios that puzzles most people. The 500 rule might work fairly well for pump users but for those on MDI (using a separate basal and bolus insulin) the calculations that the 500 rule gives out might not be at all acurate and so at the end of the day, they have got to use guesswork in calculating the correct bolus dose and just do loads of bg tests - pre meal and post meal and logging down of course the amount of carb that they have eaten for each meal. It is only by trial and error that everyone gets the hang of how to balance themselves out.

Whatever rule you use, and there are many, I think it's only ever going to be a starting point. I'm on a pump and if I stuck to the 500 rule I'd get in terrible trouble. It's close but not close enough. I did read elsewhere about other "rules" for those on MDI, and also according to the type of insulin, I think it was somewhere in the following link: http://www.diabetesnet.com/index.php The important thing is understanding how to modify them to suit your diet/lifestyle.

 

[crystalyips]

Most people soon learn the carb value of food without having to weigh everything and I doubt there are many people who don't shop in supermarkets.

It would perhaps be better if newly diagnosed people were admitted to hospital and get some sort of regime going rather than being sent home with an insulin pen and left to get on with it.

 

[crystalyips]

Most people soon learn the carb value of food without having to weigh everything and I doubt there are many people who don't shop in supermarkets.

It would perhaps be better if newly diagnosed people were admitted to hospital to get some sort of regime going rather than being sent home with an insulin pen and left to get on with it.

 

[iHs]

It would perhaps be better if newly diagnosed people were admitted to hospital to get some sort of regime going rather than being sent home with an insulin pen and left to get on with it.

This is something else that should be raised with DEN. As far as I know, only kids get taken into hospital when starting off on insulin; adults get left to get on with it as Crystalyps has stated probably with little understanding of how insulin will work or on the importance of calculating carb values of food or how to space out their carb intake when using biphasic insulins.

In this day and age, life with diabetes should be getting much much easier but instead it's getting more and more complex.

 

[crystalyips]

I can honestly say that apart from a 30 second chat with a dsn about injecting insulin I've not received any education fron healthcare workers. The word carbs has never been mentioned.
I would have benefitted greatly by some sort of diabetes education which should be standard nationwide.

 

[Stuboy]

Im not convinced that admitting every newly diagnosed person into hospital for education is the way forward... there's already a shortage of beds on the NHS as it is. If someone newly diagnosed doesn't need to take up bed space... then they should be able to go home. I was in hospital for three days... but then i was DKA at diagnosis.

I agree they shuoldn't be just "given a pen and sent on their way". But perhaps to be started on a structured education program for newly diagnosed people, immediatly... Maybe a program that doesn't require a waiting list or for a course to "start". Something where you can just join in and start your learning process. No idea how that would work, but im sure something a like could be thought up.

 

[kegstore]

Most people soon learn the carb value of food without having to weigh everything and I doubt there are many people who don't shop in supermarkets.

Yes it's easy to do, so given the huge difference this can make why don't more learn how, and to do it accurately?

It doesn't really matter where you shop for food, but I reckon quite a few people do actually select their own (unlabelled) produce to buy, instead of pre-packaged or processed items along with their "best by" dates, only printed presumably because we no longer know how to tell when food is good to eat or not?!

 

[Stuboy]

Me and my other half quite often buy goods from smaller local businesses, fruit, veg (inc. potato's etc) which obviously doesn't have nutritional information. Learning about portion sizes vs carbs for foods that we regularly eat is of massive importance IMO.

 

[crystalyips]

When you initially get told that you've become diabetic there is a great deal to learn - whether from forums such as this one, dsns or other diabetes sites that give you reams of information. Maybe people need time to get used to being diabetic and all that goes with it before they even begin to worry about carb