Are our diabetes courses adequate and balanced ?

[Steve711]

Would like opinions on this as i really do feel some of the information given to us has no balance .

I was diagnosed with type 2 in April the 20th this year with an Hb1c of 99 and didn't really want drugs so set about a complete lifestyle change with eating low carb and joining a gym for the first time in my life.
Since this time i have lost three stone in weight and instead of a waking bs of around 13 it is now roughly 5.8 to 6.5 and stays roughly this during the day so will be interesting to see my next HB1c in September .

Anyway i got a link from my doctors to arrange a 4 hour diabetes course which i attended online Wednesday.
The lady taking the course was very nice and i was looking forward to learning a bit more about things but can honestly say i learned absolutely nothing apart from what i wouldn't do unless i wanted to make things worse (In my opinion)

We got to the section on food and i do understand and respect that some people really want to carry on and use medication and others may indeed need to for other reasons but what if you want to reverse this around ?

After me telling her that i am using a low carb diet she said she was concerned as this was an unhealthy way of eating and she didn't agree with finger pricking as it can cause nerve damage and its best to wait until later on in case i need insulin.

In the end she said she understood what i was saying but not everyone is as motivated and they have to do courses for all.
This of course i accept but what about those who want to reverse this around and what about the public money that could be saved ?

 

[Leadinglights]

The course I did was still focussed on the carbs with every meal, low fat approach which really has not caught up with some more up to date thinking.
I had a bit of a rant at my daughter (a doctor) about GP's rushing to insist on people going onto medication without giving them a chance with lifestyle change. She said that as a doctor you get a feel for how engaged and motivated people will be in making those changes. Some people just won't so the only option is the meds.

 

[What the..?]

I declined the offer of one of those courses, because by then I'd already read enough about them to know I wouldn't benefit. I wholeheartedly agree Steve. I was lucky in that my test level was far lower than yours at diagnosis, at 53 I had only really edged into the diabetes zone, but chose not to take the medication which my GP prescribed without a second thought. I was given no information, nothing was explained to me, he just said I had Type Two diabetes and I should take the tablets. Even when I asked about the diet and exercise route (which I'd read about on here prior to the appointment) I was told quickly and firmly that it doesn't really work. He said 'it's all shakes and soups and things and isn't sustainable'. I am very frustrated at the number of people who obviously want to help themselves get better, but who are given little, no, or incorrect information. It is a huge shame, and so very shortsighted.
I understand what your daughter said Leadinglights, but in my case I was very motivated but the response from my GP could well have knocked me right down. It did, temporarily - I cried all the way home, but luckily as soon as I got back I set about arming myself with information from this forum. Thanks to which my last blood test came back as 46 - and I haven't taken a single tablet. I've just been for my next one, and am awaiting that result with interest.
Well done Steve on the fantastic weight loss! Good luck to you.

 

[DaveB]

Hi. I'm not surprised. I've successfully managed to avoid being offered any course in 20 years. I remain appalled by the absurd diet advice given to many which is actually harmful and not what you expect from an NHS service which is supposed to look after our health. I'm afraid you can trace some of this advice back to the very powerful food industry lobby who want to sell us highly profitable carbs. They fund much of the research carried out on diet and it's not surprising what the end result is.

 

[Leadinglights]

I declined the offer of one of those courses, because by then I'd already read enough about them to know I wouldn't benefit. I wholeheartedly agree Steve. I was lucky in that my test level was far lower than yours at diagnosis, at 53 I had only really edged into the diabetes zone, but chose not to take the medication which my GP prescribed without a second thought. I was given no information, nothing was explained to me, he just said I had Type Two diabetes and I should take the tablets. Even when I asked about the diet and exercise route (which I'd read about on here prior to the appointment) I was told quickly and firmly that it doesn't really work. He said 'it's all shakes and soups and things and isn't sustainable'. I am very frustrated at the number of people who obviously want to help themselves get better, but who are given little, no, or incorrect information. It is a huge shame, and so very shortsighted.
I understand what your daughter said Leadinglights, but in my case I was very motivated but the response from my GP could well have knocked me right down. It did, temporarily - I cried all the way home, but luckily as soon as I got back I set about arming myself with information from this forum. Thanks to which my last blood test came back as 46 - and I haven't taken a single tablet. I've just been for my next one, and am awaiting that result with interest.
Well done Steve on the fantastic weight loss! Good luck to you.

Well done to you for standing your ground and going down a route which has been successful for you.
Many people are so shocked by their diagnosis they do not have time or ability to think about the next step immediately and get bamboozled into agreeing to a course of action which may not be suitable for them.

 

[kentish maid]

I thought I had gone back to playgroup when I went on mine. We spent at least half an hour in small groups playing with the sort of pretend foods they have in playgroups and discussing amongst ourselves which section of the 'Eatwell plate' we would put them in. The woman running the course then came round to 'see how well we had done' and then we had a group discussion about it. Having tutored adults I think I spent the rest of the session mulling over how it could have been done better.
I did mention that I was prediabetic and I planned to lose weight by reducing carbs and make life changes but she was not over impressed
They spent a lot of time telling us about the dangers of diabetes. NEVER go bare foot, have regular eye checks etc. but to be honest they were all covered by the literature that the surgery had given me. They also were of the strong opinion that all type 2 diabetics should be on statins.
I have managed to avoid tablets for 4 years but am now on steroids and am waiting for an HbA1C test as I feel my sugar levels are slowly increasing, despite no change to diet or exercise

 

[helli]

I notice all respondents are from people with type 2 so I thought I would add my thoughts about The Type 1 course in the UK.

A few years ago, I attended my CCG's equivalent of DAFNE.
My main complaint would be that it was a bit late for me (12 years after my diagnosis) but it covered a lot about insulin dosage, had practical carb counting examples and what I would consider "living with Type 1" - sickness, exercise, travel, alcohol, stress, ...
Overall, the best thing was to get to spend time with other people with Type 1.

I know many DAFNE courses are held for full days for a week. Thankfully, mine was from 5pm to 9pm one evening a week for 5 weeks so I only had to leave work a little early rather than take a week off. And having the week between sessions gave us time to put into practice what we had learnt - especially the exercise and alcohol ones for me 🙄

If anyone is offered the chance for a DAFNE course, I would strongly recommend it ... even if, like me, your diagnosis was over a decade ago. I felt it was balanced and more than adequate.

 

[rebrascora]

I have to say that the Type 1 education (DAFNE) and it's equivalents, is great. Whilst I was reticent because of the title... Dose Adjustment For Normal Eating, when I was following a low carb, higher fat way of eating, I am so pleased I attended. Yes there was a rather infantile section on food and assessing carbs, but to be fair that is an important aspect of insulin usage and it needs to be taught at a basic level to ensure that everyone understands. The main thing about the course was that the educators are trained to a very high level and being open and non judgmental is a key part of their training and the course is all about helping people to keep themselves safe regardless of their food (or drink) choices. The course is also based on learning from each other almost more than being text book/syllabus taught.

You would think that the education courses for Type 2 diabetics would be worth investing more in, because there are so many more Type 2 diabetics and with the right information and perhaps input from a motivational speaker who has improved their HbA1c through dietary/lifestyle changes like people on this forum... even if it was just a video presentation.... it might help people feel more uplifted and ready to tackle the challenge rather than disappointed and discouraged by the course and of course given inappropriate dietary advice.

It would be good if Diabetes UK could be a bit braver and embrace the new dietary options which are clearly shown to be working for so many people on the forum and perhaps lead the NHS away from the old outdated advice instead of hanging onto it's apron strings in this respect. Perhaps they could coordinate some motivational presentations from everyday members of the forum who have done extraordinary things with improving their HbA1c, which could be included in the Desmond course.

I see @helli has posted similar about Type 1 education whilst I was unable to send my post due to forum dropping out.

 

[kentish maid]

@helli and @rebrascora , you both mention you are type 1 and I noticed on the thread

Do DN’s have to do specific training to practiice?​

that you have both been under DSN's
I am wondering if the course for type 2's, like the DEREK course I attended, are run by non specialist diabetic nurses, and the DAPHNE courses are run by DSN's ? That may account for the differences

​

 

[rebrascora]

@helli and @rebrascora , you both mention you are type 1 and I noticed on the thread

Do DN’s have to do specific training to practiice?​

that you have both been under DSN's
I am wondering if the course for type 2's, like the DEREK course I attended, are run by non specialist diabetic nurses, and the DAPHNE courses are run by DSN's ? That may account for the differences

​

I believe that DNs have in house training from DSNs but I am not sure how formal that training is.

I think many of the Type 2 courses offered are outsourced so may not even be nurse led at all, but there will be basic NHS input on dietary advice which is why it all ends up as the "eatwell plate" with wholemeal carbs and low fat mantra.

The DAFNE course I attended only recruit the highest trained DSNs and they have to meet very strict criteria regarding their educator assessment and I think they get reassessed regularly. That said, because Type 1s are insulin controlled, they don't offer dietary advice, merely how to dose adjust for what you choose to eat and drink. They were not critical of my low carb approach because the whole mantra is to help people to manage their diabetes in a way that suits their lifestyle and keeps them safe (or as safe as possible) .... including drug addicts and alcoholics and recovering sugar addicts like me. They accept that people have eating disorders and the course is not designed to try to change that behaviour, but to help people to use their insulin safely without judging their lifestyle choices. That is where it very much differs from Type 2 education courses which are trying to encourage people to eat more "healthily" and increase activity levels.

The main focus of the DAFNE course is to reduce the number of emergency admissions due to severe hypos and DKAs and obviously reduce deaths. I guess success/cost effectiveness is easily measurable in that respect.

Just to clarify, as far as I am aware, I don't have an assigned DSN and apart from one being there at the GP surgery when I was started on insulin, and those running the DAFNE course, and ringing the helpline a few times, I have only had contact with the consultant who I now have a good rapport with or a registrar (who seemed to know very little indeed but at least had the foresight to know she didn't know!).

 

[JJay]

I wish I could finish my course! Our CCG offers DAFNE but also a 4 x 4hr a week course based on DAFNE of which we managed 2 weeks before Covid reared its ugly head. No word yet about resuming.

Possibly I was the most experienced of us there with 25 years under my belt (I hadn't really felt the need for "education" before as I'm by nature a self-sufficient person who likes to find things out for myself) , but we had people at all stages of the journey, of which the newest was only 6 weeks in. This is why they need to include the basics. I didn't see playing with empty packets as patronising, more as light relief!

I felt the DSNs & dietician were very open to all approaches including low carb and they were pragmatic and positive, which I found very motivating. They were also very anxious to get the "new girl" using Libre asap (the rest of us already were!) which was encouraging.

 

[grovesy]

Having been a member here since the bgining of this forum I have noticed many Type 2 seem to have mixed views on the courses offered, where most Type 1 seem to mainly positive about the courses.

 

[Bruce Stephens]

where most Type 1 seem to mainly positive about the courses.

The only negative comments I remember are that the course didn't really have anything they didn't already know.

 

[rebrascora]

I felt the DSNs & dietician were very open to all approaches including low carb and they were pragmatic and positive, which I found very motivating. They were also very anxious to get the "new girl" using Libre asap (the rest of us already were!) which was encouraging.

Yes, that is very much how it is pitched to be totally inclusive and open and it certainly seems to be the foot in the door for getting access to technology. You really feel like the educators are on your side and keen to help you in any way they can including pulling strings with contacts/consultants, to help get you whatever they believe will benefit you.

 

[kentish maid]

Just to clarify, as far as I am aware, I don't have an assigned DSN

Apologies, I may have worded my reply a bit clumsily 🙂

 

[Bruce Stephens]

Yes, that is very much how it is pitched to be totally inclusive and open and it certainly seems to be the foot in the door for getting access to technology.

It does, and I thought it was written in to the initial Libre funding agreement but maybe I'm misremembering. In any case, it's something that Partha Kar really, really doesn't like:

https://twitter.com/x/status/1425745570250072066

 

[rebrascora]

Apologies, I may have worded my reply a bit clumsily 🙂

No worries.
I believe some Type 1s may have an allocated DSN. I keep meaning to ask exactly how the system works here as I believe it may well vary under different trusts. I think our trust is probably a good one in respect of diabetes because the lead consultant is so passionate about it. I currently have roughly 6 monthly appointments with the consultant (telephone these days) and an annual review with DN at the GP surgery to do the physical checks, get blood taken etc. I expect that if my results continue to be stable I will go on to yearly appointments or maybe even discharged from the clinic.

 

[rebrascora]

It does, and I thought it was written in to the initial Libre funding agreement but maybe I'm misremembering. In any case, it's something that Partha Kar really, really doesn't like:

https://twitter.com/x/status/1425745570250072066

It was never put to me like that, ie. as a bargaining tool and in fact I think I was the only one on the course who didn't have Libre. I still went in to see the consultant at my next appointment afterwards fully expecting and prepared to fight my corner for Libre, but he just looked at my data and agreed it would benefit me. Took nearly a year before it actually happened and I got it on prescription but, I am certain that being a DAFNE "graduate" swung it. I think there is a big difference between using technology as a carrot stick to get people to attend education courses or worse, refusing people technology unless they attend courses, and HCPs putting themselves out to help you because you have demonstrated that you want to help yourself and are prepared to improve your knowledge.

Since the course, at least 2 of the others went on to pumps within 2-3 months and a pump was mentioned at a couple of my appointments since then, so if I really wanted one, I think I would likely be able to get one, but it doesn't interest me at the moment.
I think technology can be wasted on people who don't understand it or don't understand their diabetes and assume that Libre or a pump will solve their problems, when it is knowledge which helps you benefit from the technology. I think DAFNE teaches you to understand your own diabetes better and be more confident in making decisions and adjustments, particularly to basal doses. If you can demonstrate that you have enough knowledge and understanding without attending an education course then you should be given access to the technology but I guess it is quite difficult for a consultant to assess that in a 10min 6 monthly or annual appointment.

 

[JJay]

It does, and I thought it was written in to the initial Libre funding agreement but maybe I'm misremembering. In any case, it's something that Partha Kar really, really doesn't like:

https://twitter.com/x/status/1425745570250072066

No, I wouldn’t say that was happening in this instance. It was very much “let’s get you using Libre” rather than, “now you’re doing this course you can have it”. In fact the only “education” requirement for getting Libre round here was to attend a 2 hour session with DSNs and a rep from Abbott.

 

[helli]

The reason I went my DAFNE-like course was that it was a pre requisite for a pump (it was pre-Libre days).
Whilst I disagree with using absence as an excuse to deny technology, I totally get where the guidance comes from. I find the pump much more complex than injecting and requires greater accuracy with regard to carb counting. So as well as ensuring everyone with pumps have minimum knowledge, it also gave the DSNs who ran the sessions a chance to unofficially assess our capability to manage a pump. Whilst everyone on my course who attended all sessions were committed to managing their diabetes, some certainly found carb counting more challenging than others and may struggle with a pump.