Outrage! DAFNE after 1 year

[anna29]

It took me 7 years to get on a DAFNE course.It depends what hospital you go to..... some clinics dont offer it because their staff are not trained in DAFNE.
I think every DR and Nurse who treat diabetics should do the course too!!!

This is a very valid point - as this is the case in some certain hospitals .
No resources or funding available to train staff DSN'S to further
educate their diabetic patients .
Staff have to attend training lectures and this is taken out of
the funds/budget .

Some DSN's in certain areas are now on rota part time vacancies as
no longer are the full time posts available .
I know of 2 DSN's that do a job share between them both .
Cheaper on the funds/budget this way !

The course's available places are growing more limited due to lack
of staff available to do this within their own rota hours in clinic
and nursing time hours .
Hence why only so many places and dates to attend are available .

The Desmond and DAFNE courses up here have a plus 6 monthly
waiting list .
Both the lists and timescale able to do these courses is growing much longer ...

 

[Diamattic]

I think this is a very tricky situation, because the person would be dispensing 'medical' information, so they would need to be very thoroughly educated and trained on the subject and kept up to date. But at the same time, Doctors who treat Diabetics do not need to know anything about nutrition or diet so it doesn't always make sense for them to be giving out information.

I think this would be best left to a subset of dietitians, who know how the body works, AND how diabetes works.. I wouldn't just trust any doctor to give me advice because i know for a fact not every doctor knows everything about diabetes AND nutrition, but at the same time i wouldn't just trust someone who knows about nutrition lol

I can see why there is a gap in training, its medical, but also not medical in a way.

 

[Daibell]

Thats kinda BS..

Here in Canada we have 'diabetic educators' who work at the hospitals and clinics. They aren't nurses or doctors, but people trained specifically to help diabetics manage our sugars and diet. Anytime i want i can make an appointment and ask any questions i may have. On my first appointment they taught me carb counting, recording my meals, and how to adjust my doses accordingly as well as providing me with a bunch of food charts and calculations for determining how my body should react to 1u of insulin or 15g of carbs.

After that my follow up a week later checked in with my progress, and then again a month later... and again whenever i wanted to make an appointment. I have never had any trouble scheduling appointments within a couple days of calling.

Also, all of the appointments and material were covered by the government.. so free lol

They also provided me with my meter, and my Novopen echo, and Sanofi Junior star pens since i was having troubles with full units, also all free.

Hi. I think in many ways Canada is ahead of the UK and USA in the medical game. The NHS can be very good particularly in an emergency but for everyday stuff including diabetes it can be dire. Your approach to T1 training is way ahead of DAFNE.

 

[tim2000s]

I think this is a very tricky situation, because the person would be dispensing 'medical' information, so they would need to be very thoroughly educated and trained on the subject and kept up to date. But at the same time, Doctors who treat Diabetics do not need to know anything about nutrition or diet so it doesn't always make sense for them to be giving out information.

I think this would be best left to a subset of dietitians, who know how the body works, AND how diabetes works.. I wouldn't just trust any doctor to give me advice because i know for a fact not every doctor knows everything about diabetes AND nutrition, but at the same time i wouldn't just trust someone who knows about nutrition lol

I can see why there is a gap in training, its medical, but also not medical in a way.

I'd rather not have a dietitian giving me the advice given my experience of their knowledge and that of others on here. DAFNE is little to do with diet and much more to do with being able to do maths.

Really, it should incorporate those who use DAFNE and know how to use it and how it works in real life, rather than the theoretical knowledge that often comes along!

 

[Emmotha]

I like the sound of the Canadian version and the idea of the moduled course.

Waiting time for an appointment at my local clinic is about 2 months, then they tend to cancel them the day before and u have to wait another 2 months.

I would have paid to go on it to be fair, i would want to do anything to be able to get the best control. Really sad that ppl don't turn up

 

[Diamattic]

Well, maybe Canada feels they need to keep their game up since we discovered insulin lol

I am living an hour away from where Dr. Banting taught at university so maybe this area is trying really hard to keep up the good work lol Who knows!

I think its fairly standard in Ontario, from what i know every clinic has a diabetes educator, my city of 50,000 people has like 10.

So if we say 10% of the pop is diabetic, thats 5000 people in my city, is 1 educator for every 250 people lol

Not much of a wait haha

 

[beardie]

I'd like to say I'm surprised but sadly I'm not. As @AndBreathe said, the mushroom theory seems prevalent. No advice for me either apart from go and look on the Internet then total outrage when I came back with a food diary and a low carb diet. The DNS was so incensed that she refused to see me and referred me to the hospital for a bollocking. The consultant was incensed at my treatment so if I were you @beardie i would contact the diabetes department at your local hospital! You might just get the support you are entitled to! I would also think about low carbing. Have read other posts where they have said that lchf helps.
@Emmotha
There are many diabetics who won't take care of their condition. My aunt and a woman at work who makes me despair! Those of us who come on here appear to be in the minority! That said, it took huge amounts of sheer cussedness to stant against the tight of DNS, GPs and even the consultant as well as the DNS on the training course about my lchf diet. My dn actually did me a massive favour by being so unpleasant as it made me even more determined to carry on but most people would have caved! Hugsx

Thanks Scandi but I have been low carb for a while. ( I used to be this is too difficult.)

 

[beardie]

Please, insist. See another doctor and INSIST on seeing a neurologist. It's your limbs we're talking about, not theirs. You need expert help/care. Just insist and keep insisting.

The Dr Bernstein line is that truly normal blood sugars will gradually repair nerve damage, that the nerves repair and replace themselves. I don't know where you are control-wise, or if you think you can get any tighter. Low carb would be the way. Have you read his book? £5 on a Kindle but mostly available free on net : http://www.diabetes-book.com/

Feel strong and insist.

I did insist. She spoke to a neurologist and he said there was no point in seeing me.

 

[beardie]

Beardie - As a diabetic, you can self-refer to the Podiatry Service. In my area, you can either complete a form, and an appointment comes in the post, or, as happened in my case, you suffer an injury or the like, there is a walk-in clinic 5 days a week. In a bit of a flap, I attended the walk-in clinic (I had to go into the city for it, but I was happy to make the effort. They're my feet after all!), had a full examination with someone taking an interest.

I left there with a clear assessment of the injury and a plan to monitor at home, by taking pics on my phone, weekly, as it'll take several months for the nail to grow out.

Fortunately, I have decent feet, so I've been released back into the wild.

Do you know where your local podiatry service runs from? Whilst you probably ideally might be best placed with a neurology referal, it would be a decent start, with people who really "know" feet?

Therein lies my problem AndBreathe. Officially I am not diabetic. Sorry for everyone I know who I am and forget. I was thisistoodifficult.

 

[Scandichic]

Thanks Scandi but I have been low carb for a while. ( I used to be this is too difficult.)

I don't know what to suggest I dare say we have spoken before then

 

[Heathenlass]

Therein lies my problem AndBreathe. Officially I am not diabetic. Sorry for everyone I know who I am and forget. I was thisistoodifficult.

Good to see you,@beardie aka TITD

I was wondering where you'd got to !

Signy

 

[Heathenlass]

I'd rather not have a dietitian giving me the advice given my experience of their knowledge and that of others on here. DAFNE is little to do with diet and much more to do with being able to do maths.

Really, it should incorporate those who use DAFNE and know how to use it and how it works in real life, rather than the theoretical knowledge that often comes along!

To be fair, many of the DAFNE educators are specialised Dieticians, and know more than most practice " diabetic " nurses about MDI etc.

I see where you are coming from though, and have thought that actual DAFNE graduates working as volunteers perhaps, would be useful contacts for the newly diagnosed. In daily life, how often does anyone get to meet and properly chat to other diabetics ? An informal coffee meet up session at clinics may be an idea , but is unlikely to happen unfortunately .

Signy

 

[beardie]

Good to see you,@beardie aka TITD

I was wondering where you'd got to !

Signy

I have been around annoying various people.

 

[phoenix]

To be fair, many of the DAFNE educators are specialised Dieticians, and know more than most practice " diabetic " nurses about MDI etc.

I see where you are coming from though, and have thought that actual DAFNE graduates working as volunteers perhaps, would be useful contacts for the newly diagnosed. In daily life, how often does anyone get to meet and properly chat to other diabetics ? An informal coffee meet up session at clinics may be an idea , but is unlikely to happen unfortunately .

Signy

They are using lay educators for Desmond so it's not an unfeasible idea
http://www.desmond-project.org.uk/whatlayeducatorscandoforyou-316.html

 

[lizdeluz]

@phoenix , I agree with you on all the points raised.

I've been to many retinal screenings where I've had conversations with the nurses undertaking the procedure who have been surprised that after 26+ years of having diabetes I have such a low level of retinopathy compared to significantly younger diabetics with much less time with the condition. This might not seem relevant, but it shows that the average T1 diabetic either doesn't understand or isn't motivated to manage their condition effectively.

In both those cases putting someone on DAFNE in the first year is not really going to help,. I agree that those who show the motivation and ability to cope should be fast tracked though.

I don't agree that patients can be left to self-select (or self-deselect) in this way, though I know that many of us feel that we're climbing up the wall in frustration with this. I think it's more a question of :

• The DAFNE course content and how it is managed, and relevant materials provided.
• The quality of the teaching and matching the teaching content to the students/patients present.
• The timing of the classes and making it mandatory for patients to attend.
• Grouping the attendees appropriately.
• Requiring publishable feedback from students/patients on the usefulness of the course delivered.

In my experience, the DAFNE instructors don't have the requisite teaching experience. They may have the requisite knowledge but can they impart it? Do they get sufficient training or are they expected to deliver DAFNE as an add-on? If so, do they feel put-upon and ill-prepared? No teacher in our secondary schools would be expected to succeed with the conditions currently undermining the DAFNE classes. It's got to be a whole lot better, come on!!!

 

[Scandichic]

I don't agree that patients can be left to self-select (or self-deselect) in this way, though I know that many of us feel that we're climbing up the wall in frustration with this. I think it's more a question of :

• The DAFNE course content and how it is managed, and relevant materials provided.
• The quality of the teaching and matching the teaching content to the students/patients present.
• The timing of the classes and making it mandatory for patients to attend.
• Grouping the attendees appropriately.
• Requiring publishable feedback from students/patients on the usefulness of the course delivered.

In my experience, the DAFNE instructors don't have the requisite teaching experience. They may have the requisite knowledge but can they impart it? Do they get sufficient training or are they expected to deliver DAFNE as an add-on? If so, do they feel put-upon and ill-prepared? No teacher in our secondary schools would be expected to succeed with the conditions currently undermining the DAFNE classes. It's got to be a whole lot better, come on!!!

When I think about the education course I attended, the resources were inappropriate and patronising for adults although this was not the intention. They were just doing their best.

 

[tim2000s]

@lizdeluz I don't believe the hospital staff want them to deselect in this fashion. I think the hard part is that conditions like Diabetes are personal and require you to take responsibility for your own health and control. There is a significant part of the population for whom this is an alien concept and they would rather go to the doctor who will fix them.

Sadly, getting these people to take responsibility is extremely difficult and is probably the bane of the NHS. Your suggestions don't really help with that, as while they may provide an informal support network and a better level of education, the type of person about which we are talking either simply doesn't turn up to the education or having completed it, rapidly loses interest in continuing to use it.

Other than hooking them up to an automated system that monitors them in real time and dispenses Insulin as necessary, I'm not sure how you can get them to take their life into their own hands in a positive fashion. I think any suggestions would be great and I know there has been a lot of discussion in the NHS as to the best approaches to encourage participation and involvement from those who normally wouldn't do so.

 

[Emmotha]

My course was a local version run by the dietician and nurse. It was brilliant.
It ran every Thursday over 4 weeks. We kept out food diaries each week based on our learnings then they taught us how to analyse ratios and bolus to make safe adjustments

 

[lizdeluz]

@lizdeluz I don't believe the hospital staff want them to deselect in this fashion. I think the hard part is that conditions like Diabetes are personal and require you to take responsibility for your own health and control. There is a significant part of the population for whom this is an alien concept and they would rather go to the doctor who will fix them.

Sadly, getting these people to take responsibility is extremely difficult and is probably the bane of the NHS. Your suggestions don't really help with that, as while they may provide an informal support network and a better level of education, the type of person about which we are talking either simply doesn't turn up to the education or having completed it, rapidly loses interest in continuing to use it.

Other than hooking them up to an automated system that monitors them in real time and dispenses Insulin as necessary, I'm not sure how you can get them to take their life into their own hands in a positive fashion. I think any suggestions would be great and I know there has been a lot of discussion in the NHS as to the best approaches to encourage participation and involvement from those who normally wouldn't do so.

Yes, I agree with you that my suggestions seem utopian.

The DAFNE classes I attended are a case in point, and were a real eye-opener for me to the enormity of the task facing the NHS. The teachers were well-prepared, patient, having to tread a difficult line between the different needs of the disparate bunch of people in front of them; they used tact, humour, and persistence to move each of us individuals on from where we each were with our condition. However, I did feel their hands were tied by a lack of resources and that there was, metaphorically-speaking, a long queue of people waiting outside the door.

We, the diabetes T1, let alone other sub-types, are obviously a 'mixed-ability class' , but not just in terms of intellectual ability to grasp the problems of managing diabetes almost on the same level as the consultant treating you, but also in terms of each diabetic's own life experiences and emotional response to their condition. We only need to look around this Forum to see the multiplicity of problems that diabetics face on a daily basis with courage and good humour for the most part. And these people are the ones sufficiently engaged to join the Forum!

However, I don't think it's enough for society to wring its hands and give up the struggle. Diabetes is a growing problem and is not properly addressed by the media, the food industry, politicians, schools, employers, the pharmaceutical companies, you name it... Who is going to lead the way if the NHS doesn't? I'm afraid it will be up to us, the strongest 'interest-group', to press for better treatment and to increase pressure on the NHS, and therefore politicians, to make sure it happens.

Don't get me wrong: I know we are extremely lucky with DUK and our NHS, but we can hear people on this Forum, @Emmotha for example, who are amazed by the fact that our needs are not being met, (for example that SOME of the newly-diagnosed are left in a state of unknowing because that's what's best for them??). As I've already said, older diabetics like myself can look back and see that progress has been made, but it has been slow and now it needs to speed up big time.

You say that the NHS has discussed ways to improve patient participation in their own care: could you send me a link to any materials you know of?

 

[tim2000s]

Yes, I agree with you that my suggestions seem utopian.

The DAFNE classes I attended are a case in point, and were a real eye-opener for me to the enormity of the task facing the NHS. The teachers were well-prepared, patient, having to tread a difficult line between the different needs of the disparate bunch of people in front of them; they used tact, humour, and persistence to move each of us individuals on from where we each were with our condition. However, I did feel their hands were tied by a lack of resources and that there was, metaphorically-speaking, a long queue of people waiting outside the door.

We, the diabetes T1, let alone other sub-types, are obviously a 'mixed-ability class' , but not just in terms of intellectual ability to grasp the problems of managing diabetes almost on the same level as the consultant treating you, but also in terms of each diabetic's own life experiences and emotional response to their condition. We only need to look around this Forum to see the multiplicity of problems that diabetics face on a daily basis with courage and good humour for the most part. And these people are the ones sufficiently engaged to join the Forum!

However, I don't think it's enough for society to wring its hands and give up the struggle. Diabetes is a growing problem and is not properly addressed by the media, the food industry, politicians, schools, employers, the pharmaceutical companies, you name it... Who is going to lead the way if the NHS doesn't? I'm afraid it will be up to us, the strongest 'interest-group', to press for better treatment and to increase pressure on the NHS, and therefore politicians, to make sure it happens.

Don't get me wrong: I know we are extremely lucky with DUK and our NHS, but we can hear people on this Forum, @Emmotha for example, who are amazed by the fact that our needs are not being met, (for example that SOME of the newly-diagnosed are left in a state of unknowing because that's what's best for them??). As I've already said, older diabetics like myself can look back and see that progress has been made, but it has been slow and now it needs to speed up big time.

You say that the NHS has discussed ways to improve patient participation in their own care: could you send me a link to any materials you know of?

It was in something I was reading yesterday. I'm afraid that I'm struggling to find it.