Outrage! DAFNE after 1 year

Emmotha said:

I just think it's ludicrous for people to fumble around on their own for a year without proper guidance. It's irresponsible and silly

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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

beardie said:

My arms and legs feel like they they belong to someone else. My hands and feet don't feel temperature difference. My whole skin feels no pain if slapped. doctor says don't worry. I say is it common. She says never heard of it.

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She should be sacked for incompetence. Disgraceful!

beardie said:

My control is so good that all 4 gps say I am cured. Wish I was.

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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 think one of the hardest things to do is to stand up and complain. I'm a cussid, head above the parapet type of person who will accept being shot at and will shoot back. If it think the service is **** I will do something about it. I have a list of things to discuss with the new diabetic clinic having taken myself out of the old one because, frankly, there is more information on the forum than there was from the old one.

Sadly, the only way to get something that you think will benefit you is to stand up and be counted. Due to this, you have to pick the battles you want to put energy into.

@beardie This is one battle I think you should fight.

beardie said:

Been seen by nobody other that 4 gps.

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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?

tim2000s said:

I think one of the hardest things to do is to stand up and complain. I'm a cussid, head above the parapet type of person who will accept being shot at and will shoot back. If it think the service is **** I will do something about it. I have a list of things to discuss with the new diabetic clinic having taken myself out of the old one because, frankly, there is more information on the forum than there was from the old one.

Sadly, the only way to get something that you think will benefit you is to stand up and be counted. Due to this, you have to pick the battles you want to put energy into.

@beardie This is one battle I think you should fight.

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Totally agree! At the end of the day your doc goes home at the end of the day! You have this condition for life. If you have to have amputations as a result of poor care from GP your whole quality of life will be impacted! Please do something about it. I would also put in a complaint. Outrageous!

Good for you, I hope you get a positive response. I know there are some newly diagnosed on the forum, you could start a thread and ask and see what responses you get.
RRB

Someone mentioned that DAFNE courses are very expensive to run, which is one of the reasons why they are not run that frequently. Does anyone know why this is?

I've just caught up with this topic, it's crazy. Like others I've been a T1 for a long time (39 years), I was admitted to hospital, kept in for around a week and discharged when well enough but also when I could inject and starting to self manage (I was 7). It's great there's such an awareness of T2 but it just seems to me that T1s are on the back burner in some areas? I just can't understand how T1s can be left so long without proper intense help to manage their condition. We all know 'side effects' such as DKA and hypos are more or less an instant occurrence for T1s (of course T2s on meds hypo too and in rare cases DKA), not something that happens years down the line.

tim2000s said:

Someone mentioned that DAFNE courses are very expensive to run, which is one of the reasons why they are not run that frequently. Does anyone know why this is?

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It's some years since I read up about it but the cost back then was something like £700 per person, you also have to take into consideration the staff that has to run the course, they are just DSN's and if they have a heavy work schedule then the courses will be put on the back-burner.........unfortunately.

tim2000s said:

Someone mentioned that DAFNE courses are very expensive to run, which is one of the reasons why they are not run that frequently. Does anyone know why this is?

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Is it really that high?
http://www.dafne.uk.com/uploads/135/documents/06_factsheetsix_12pt_18_06_12.pdf
Actually, I think the honeymoon reason is a good reason not to introduce DAFNE type courses too early It is just another big variable and surely keeping the variables as few as possible will help at the beginning when there is a lot to learn.

.You also need to take into account motivation, ability/educational level (sorry that's important . There were people I met on my first diabetes course that would both find a DAFNE type course too difficult and quite threatening.I have met people who feel secure in being told exactly how to dose and eat 'just tell me how to do it')
My own doctor actually is horrified by the thought of the BDEC course , to a certain extent, that's part of the French 'doctor knows best attitude towards what they call 'self medication' but reluctantly I think that some people would really struggle with it ( I suspect though that they would give up rather than end up taking wildly inappropriate doses)
You do unfortunately need a reasonably good level of numeracy to do well with T1 diabetes management and that is increased if you use a variable dose/ meal regime. The Bournemouth team has discovered that for themselves
http://www.ncbi.nlm.nih.gov/pubmed/21978203

I do think though that everyone needs some education at the beginning so that they know what T1 is, how insulin works, the necessity for keeping good levels ie complications. They need to be able to count carbohydrates (whether through exchange methods or gs of carbs or carb units) even if they start on a more fixed dose regime (and even on mixed insulin's which depend upon a consistency of carb intake) They need to know what to do when ill and I think that they should have some education on basic principles of healthy eating. The value of exercise also needs to be highlighted (not just a throw away add on)They should also learn what checks and tests are important and why.
This should come right at the very beginning (either one to one or a group session; I was lucky to have both)

Later then the dose adjustment and more flexibility can come for those who are motivated. Some people will already have worked out for themselves how to do this but being with other people is also important. I don't think that any of us know it all and this type of course allows people with experience of diabetes to learn from each other and from professionals (who see lot's of people with D every day)

@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.

Perhaps, rather than a postcode lottery on initial training and DAFNE behind a "paywall", a better solution would be an initial "core curriculum " available to all from diagnosis, and supplementary modules that could be released as the patient requires or feels ready for.

FergusCrawford said:

Perhaps, rather than a postcode lottery on initial training and DAFNE behind a "paywall", a better solution would be an initial "core curriculum " available to all from diagnosis, and supplementary modules that could be released as the patient requires or feels ready for.

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Agreed.

FergusCrawford said:

Perhaps, rather than a postcode lottery on initial training and DAFNE behind a "paywall", a better solution would be an initial "core curriculum " available to all from diagnosis, and supplementary modules that could be released as the patient requires or feels ready for.

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I think this is spot-on. As with so many aspects of provision for diabetics, the key is to find a way out of the 'It's too expensive to do this properly so we will do it in an expensive but half-cocked way' mentality and to rethink what is offered in a flexible way. You wouldn't think the NHS has so many management consultants, would you?

desidiabulum said:

I You wouldn't think the NHS has so many management consultants, would you?

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Some management consultants can be like seagulls!
They make a lot of noise,
snaffle all the bread,
**** on everyone,
And fly off to their next feast!

Note I said SOME!

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.

Well, we have a business opportunity!