NICE-backed self-care course ?has little effect on diabetes outcomes?

[Northerner]

Educating patients to self-manage their diabetes has little effect long-term on their lifestyle choices or their health outcomes, concludes a major UK study.

The analysis of the first UK national education programme for people with Type 2 diabetes found no difference in HbA1c levels, physical activity or smoking in a group given a full day of advice on self-care of diabetes soon after diagnosis, compared with controls.

The finding casts doubt over the validity of NICE guidelines that recommend all patients diagnosed with diabetes are given ?structured education' around the time of diagnosis, and annually thereafter, and prompted one expert to call for a return to traditional GP care.
The advice was partly based on the cost-effectiveness of the DESMOND study at one-year ? which had a mean cost of ?82 per person ? but that is now under scrutiny given the diminishing effect of the programme over time.

http://www.pulsetoday.co.uk/newsart...course-has-little-effect-on-diabetes-outcomes

(free registration required)

Maybe they need to look at what sort of education is provided and the follow-up support? Given the patchiness of knowledge and disparity in attitudes of GPs towards Type 2 diabetes, I doubt abandoning education and leaving it to the GPs will offer a better outcome

 

[novorapidboi26]

I doubt abandoning education and leaving it to the GPs will offer a better outcome

I totally agree.............

It will be a harder job trying to educate type 2 patients though, as a lot of the time the main treatment is lifestyle changes, and there the hardest ones to make............

So simply telling people that you need to do this and you need to do that isn't good enough.........

Would any type 2s care to share their experiences of DESMOND, or similar programs.........did it help?

 

[Robster65]

It ties in with that report about unsupportive family members linked to higher HbA1cs too.

Once the patient nods and agrees to all the changes with the GP, they then return to the same environment and have to try and live differently while all around them is the same as it was.

As you say, NRboi, T2s and T1s need help to change their entire world, not just be told what might help. Perhaps some sort of family orientated course to understand the serious health issues and what can be done by everyone to turn it around.

Rob

 

[SimplesL]

Hi

I did the local version of the DESMOND course in january. (Only because I traced it on google - no mention it exisited by GP etc when diagnosed). A 4 hour workshop.

It was fine as far as it went; for me highlighted importance of carbs which until then hadn't been mentioned by GP/surgery nurse. The only info I was given when diagnosed was a booklet from the British Heart Foundation on eating for a healthy heart!

Anyway since the course I have adjustedd the type of bread/breakfast cereal etc so hope my diet is better than it was; but to be quite honest the course was for type 2 person who was overweight (they tried to get them to sign up for a weight-loss programme overseen by the specialist diabetes dietician) none of them was interested. As I'm not overweight not really geared for me as all about benefit of weight loss & exercise (I go to gym most days during the week with Sunday off as it is closed)

As I'm quite well informed the course was:

(1) Too basic
(2) Too rushed
(3) No follow up or anyone you can contact after
(4) Didn't cover long-term complications enough for me which is why I went in the first place.
(5) Spent too long "looking" at plates of food & pointing out which ones were carbs!
(6) Did go through everyones meds & gave me some advice on best time to take my metformin. But this was only needed as the nurse at the GP clinic told me I could take them when I wanted (took it all at breakfast) & diabetes nurse giving the workshop thought this wasn't right as I was going too long during the day without any meds & I've followed her advice since.

Next due to see nurse at GP's in May/June once I've finished the Type 2 Aspirin trial I'm on. HBA1a has gone up last October 5.8% (metformin halved). February when checked to see if I could join this trial it was 6.5%. So still pretty good but don't want it higher & would prefer it to be nearer 6.

Take care
Lynne

 

[everydayupsanddowns]

Educating patients to self-manage their diabetes has little effect long-term on their lifestyle choices or their health outcomes, concludes a major UK study.

The analysis of the first UK national education programme for people with Type 2 diabetes found no difference in HbA1c levels, physical activity or smoking in a group given a full day of advice on self-care of diabetes soon after diagnosis, compared with controls.

I'm sorry but 'a full day'?!?!?

And WHAT exactly was the advice given? And what support after that?

We know from members here that some very simple approaches, and suitable monitoring equipment can be hugely beneficial. Ongoing peer-support (via forums like this one) is also clearly beneficial.

I was in hospital after diagnosis for about 5 days - so I had 5 'full days' of support and advice. When I left I knew next to NOTHING about how to manage my condition.

This feels very much like a report that was designed to show education, testing and lifestyle changes were not as effective as ramping up medication.

I don't know much about DESMOND course but I have read some pretty scathing reviews elsewhere. It's all down to who delivers it I think - and whether they are the type to recommend 'bananas for a midmorning snack', and/or whether they advocate (or just avoid) the subjects of self-testing and carb moderation/management.

I just hope that this study isn't used against anyone wanting to properly educate newly Dx'd T2s in the future. "oh no... we've tried telling them things - it didn't work". Yes but what did you tell them?!

 

[Emmaathome]

I'm only half way through the Xpert course, and as you know am still new to all this so maybe still in the "keen / interested" stages.

We covered the "carb awareness" bit on last nights Xpert, and even a hardened, lifelong dieter like me learned quite a lot. I did know the majority of the stuff we had covered before, about protein / carbs / etc but the amount of carbs in stuff was fascinating and will allow me to make further changes which will hopefully have a positive impact on the BG levels. I also learned I could eat a bit more protein on a daily basis, and still not put weight back on, which I think I could do with doing, to stop the hunger pangs all the time!

A lot of the people on the course I attend have had Diabetes T2 for a long time (years), and the majority of them are controlling through diet / lifestyle, although the diets didnt sound particularly healthy (and explain why some tummies are bigger than others), they were keeping their A1C levels around 7 and under. So some of the advice must stick!!!

I was offered the opportunity to take a family member to this course, although as the person in the household who does the majority of the cooking, it seemed a bit pointless, the blokes seem to bring their good lady's with them (apologies if that seems a sexist comment, its not meant to be).

I think a family session would be good - even if only to explain the possible complications - at least the family would see how important it is for us to make changes and understand what can happen if we dont. I dont want someone in the family standing over me telling me I can't eat certain foods, but it would be nice if I thought they understood what I may be facing in the future.... They can then pack and run a mile!!

 

[SimplesL]

The Xpert course was the 1 I wanted but they don't run it in my area. A potcade lottery whether any education is available & if it is pot luck how good it is.

I e-mailed them (Xpert)the other day & they sent me a leaflet to give my healthcare team & suggested I buy their book.

 

[Phil65]

Every or any 'diabetes educational course' is only going to be useful to patients/diabetics or their carers that are motivated to or are willing to accept and understand the advice given to them. Too many don't accept their diabetes and some only get motivated when they already have complications.

 

[mcdonagh47]

Educating patients to self-manage their diabetes has little effect long-term on their lifestyle choices or their health outcomes, concludes a major UK study.

And it is not just T2s on DESMOND. As far as I am aware there is no medium to long term study of the effectiveness of the DAFNE programme. In the 2001 dafne trial the average A1c of Dafne graduates dropped from 9.2 to 8.2 after six months. But then it rose back to 8.6 after a year i.e the Dafne gains seemed to washing out the longer the participants got away from the course. And no follow up after that was made.
It is the reason they have introduced Refresher courses for programmes such as X-Pert Patient Type 2.
But it was on the basis of that 2001 Trial that Dafne was declared the best thing since sliced bread and rolled out across the country pretty well. Whereas since A1cs had only come down by 0.5 over a year and seemed to be rising again I would have said "Nice try, buts its back to the drawing board".
Need a research study - 1000 Dafne graduates 5 years after the course.

 

[Abi]

I think DAFNE fall down in one or two areas. It may have changed but when I did the course the only basal checks done were overnight- there was no talk of skipping meals to check basal is ok during day and certainly still seemed to be a preference for once daily lantus as the basal- which is great it it works but from other boards plenty of people seem to need to split it or do better on levemir- and John Walsh in his book "using insulin" states that up to a third of lantus users do better on a split dose. I remember they used to show us examples of carb intakes, ratios, basal dose and blood glucose so we could try to "solve" the problem. On example was of someone having mid afternoon hypos despite being on only a tiny lunchtime ratio and the advice was to reduce the lantus dose ( taken at bedtime ) as it was assumed this was the problem, but the lady was waking up with levels of 6 ( which I would be happy with). I couldn't understand how a single basal dose can be adjusted down to avoid hypos at certain times, without going too high at others
I also feel that it oversimplified things re carb counting- saying pulses/ tomatoes etc don't need to be counted- they do for some, and also failed to mention that large carb intakes often need other strategies rather than a single injection at someone's standard ratio

I actuall got on better on MDI limiting carbs to about 100g per day. I'm slim and can get way with a lot more on the pump- primarily because it is a better basal match I think so am not propping up inadequate and erratic basal with large amounts of rapid insulin and getting erratic results
Of course there are still people who just don't want to bother either when shown all the ropes and when it is sometihng that should helpe them achieve better control, less hypos and a free er life

 

[sweetsatin]

I found the expert course very disapointing too, as Lynne says
(1) Too basic
(2) Too rushed
(3) No follow up or anyone you can contact after
(4) Didn't cover long-term complications.
(5) Spent too long "looking" at plates of food & pointing out which ones were carbs!
(6) A quick quiz at the end.

Family should be involved & educated to learn about the changes that can inprove our lifestyle and understand what complications can occur if nothing is done to change your lifestyle.
There was talk on checking BG's , but how can we check our BG's if type 2's are refused testing strips...."what is the point of self management if we don't get the tools to go with it"!
A more intense course would be helpful, also follow up and someone to contact.
Long term complications need to be introduced and understood.
I agree you have to be motivated and want to change their lifestyle choices for the better.
I ended up paying to do a diploma in Diabetes as the expert course was not much help.
I understand a lot more now, but i do get my off days where i go back to thinking "why me"...i also go off the rails for short periods of time because my family don't understand why i can't eat chocolates, cakes ect like they can, i get so sick of trying to explain things to them.
Follow up and some contacts to turn to would be a big benefit.

 

[Steff]

Can only agree with sweetsatin, altho it was nice to actually go on the course and I still use some of the advice they gave ,but it was very short n sweet not enough time spent on specific aspects and i cant blame the course for this but i made no friends from it or have i had anyone check up on me or invite me back for a follow up.

 

[Kwaka1]

Upon diagnosis I hit the ground running, doing as much research as possible into this chronic condition that had now got a hold of me. It would appear that I'm in a minority.
I started eating more healthily (not that my diet was unhealthy), gradually gave up smoking and drinking, and of course sought out peer advice. I did this because I WANTED to, and 'want' is the operative word here, because all the will in the world won't work if deep down you don't WANT to. If you take the numbers of diabetics on this forum, then work it out as a percentage of the total in the UK, this may give you an idea of who WANTS to help themselves. A small minority I fear.

 

[Newtothis]

Upon diagnosis I hit the ground running, doing as much research as possible into this chronic condition that had now got a hold of me. It would appear that I'm in a minority.
I started eating more healthily (not that my diet was unhealthy), gradually gave up smoking and drinking, and of course sought out peer advice. I did this because I WANTED to, and 'want' is the operative word here, because all the will in the world won't work if deep down you don't WANT to. If you take the numbers of diabetics on this forum, then work it out as a percentage of the total in the UK, this may give you an idea of who WANTS to help themselves. A small minority I fear.

Love this kind of attitude; I did exactly the same thing; I haven't been offered any courses but have researched; asked questions and hope I'm doing the right thing. Since diagnosis I've completely changed my diet; lost weight; increased physical activity but also am working on my emotional well-being and reaching small goals; learning to swim; tai-chi; computerised accounts and this week....I got a new job..
Life goes on...🙂

 

[Ellie Jones]

If we consider that the members of this forum are motivated, hence that's why they here asking questions looking for information to help themselves etc...

Then look at the various struggles people have, learning to adapt to a different lifestyle or maintaining that lifestyle etc...

Then it shows that it isn't easy long term, no matter how much education is provided, a lot of it purely down to willingness and long term motivation..

Another problem will always been, there will be a lot of people who kinda want to know the information, but really don't want to spend the time learning the information they need... Just take a look at some of the T1's reaction to spending 5 days doing DAFNE...

Perhaps, when it comes to education it should be split into 3 types, a basic, middle and advanced levels.. The lower courses it can be determined what knowledge you have (simple test) then after that you can chose to work yourself up the levels at your own pace etc..

Personally I think, what is happening at the moment, they are trying to educate everybody whether they want that education or not, those that do find that after the basic education they are left on their own toad...

 

[lizabetic]

............

Perhaps, when it comes to education it should be split into 3 types, a basic, middle and advanced levels.. The lower courses it can be determined what knowledge you have (simple test) then after that you can chose to work yourself up the levels at your own pace etc..

This is a really good idea! Is there noone in Diabetes UK that deals with this stuff? Maybe we should put ideas across to them, that's the only way they will improve really.

I did wonder if maybe the people selected for the study were people who were already struggling and so results are biased.

Personally, as a T1.5 that has never fitted in the right boxes i'm pretty much appauled at the care or information that has been given to me. I was never hospitalised I guess because my lack of ketones told them that I was less urgent and it was unneccesary. I don't know. But because of that I never really learnt anything, I was eating wrong in the beginning, far too much insulin = uneeded foods! Never really knew what was going on until I found this board and spoke to my new GP!

I think several sessions with a diabetes educator is neccesary, explaining the different types of diabetes for a start and explaining that carbs are the problem! I used to wonder why I went low after eating a salad :O

 

[Northerner]

...Personally, as a T1.5 that has never fitted in the right boxes i'm pretty much appauled at the care or information that has been given to me. I was never hospitalised I guess because my lack of ketones told them that I was less urgent and it was unneccesary. I don't know. But because of that I never really learnt anything, I was eating wrong in the beginning, far too much insulin = uneeded foods! Never really knew what was going on until I found this board and spoke to my new GP!

I think several sessions with a diabetes educator is neccesary, explaining the different types of diabetes for a start and explaining that carbs are the problem! I used to wonder why I went low after eating a salad :O

Although I spent 8 days in hospital at diagnosis I learned virtually nothing about diabetes. My only education in there was a rushed few minutes with the hospital DSN who taught me how to use the pens and watched me give one injection. When I left I went searching for information, borrowed a pile of books from the library (some good, some rubbish, and some I thought were good but now know to be rubbish!). I enrolled on the OU 'Diabetes Care' short course, and about 3 months after diagnosis I attended my PCT's 'Diabetes 4 Life' course, which was one day a week for 3 weeks. Always thought the title of that course was ambiguous - although it was intended to convey 'how to live your life to the full despite diabetes', it also felt a bit like 'you've got this for the rest of your life - deal with it!' 😱

The course was basic, but covered everything, and it was the first time I'd met others with Type 1. They were all about 25-30 years younger than me, but it was a good experience, learning together. All were newly-diagnosed except one guy who'd had it for 5 years. Up until then, he;d only ever counted the sugar content, not the carb content, of his food.

I did join a couple of forums, an American one and a UK one, but didn't find them very useful as they were so fragmented and you never knew where to post your questions. Then, 5 months after diagnosis, this forum was established and I've been here and learning ever since! 🙂

 

[Robster65]

I think several sessions with a diabetes educator is neccesary, explaining the different types of diabetes for a start and explaining that carbs are the problem! I used to wonder why I went low after eating a salad :O

I think you've hit upon the real hole in the system for newly diagnosed (or newly enlightened) diabetics.

US blogs have constant reference to 'diabetes educators' but there seems to be no such equivalent here. DUK are tiptoeing towards it with their new careline they've set up, using real diabetics to provide telephone support (a bit like our forum 🙄) but they need a structured, freely available setup that helps diabetics to find their feet.

Rob

 

[Northerner]

I think you've hit upon the real hole in the system for newly diagnosed (or newly enlightened) diabetics.

US blogs have constant reference to 'diabetes educators' but there seems to be no such equivalent here. DUK are tiptoeing towards it with their new careline they've set up, using real diabetics to provide telephone support (a bit like our forum 🙄) but they need a structured, freely available setup that helps diabetics to find their feet.

Rob

I thought that US Diabetes Educators were the equivalent of our DSNs? I also read an article a while ago that they are in extremely short-supply in the US - declining in numbers whilst the number of diagnosed people accelerates

 

[Robster65]

I thought that US Diabetes Educators were the equivalent of our DSNs? I also read an article a while ago that they are in extremely short-supply in the US - declining in numbers whilst the number of diagnosed people accelerates

I assumed they were diabetics (I think there's a tweeter follower who is diabetic and an educator so maybe I jumped to a conclusion 😱).

It may be that they have volunteer diabetics who fill the gaps?

Either way, it would be nice to see but I dare say they'd be so restricted on the advice they could give (which would be prescribed by the NHS) that it would defeat the object.

When I was diagnosed, I spent a week in hospital where I learnt to inject, test and what I should eat (the best they could advise at the time! 🙄) and then a health visitor called round every week for a couple of months to help us out 'in the home environment'. That could still be done if they had a volunteer network.

Rob