Not enough education on type one DB

yingtong said:

In 1964,when I was diagnosed,I was admitted to hospital I was given a injection of IZS 80 (Insulin Zinc Suspension 80 strength there 4 strengths 20,40,60 and 80) this mixture was to last 24 hrs,you had to eat at specific times because the insulin,I presume ,peaked at these times.I was taught to test my urine for sugar and ketones.After 3 days I went blind and the ward sister told me my sight would come back as they had got the sugar out of my system quickly and my eyes need to adjust, and it gradually did over the next 7 days,frightening I can assure you,as I was only 14. The day before my release I was given a diet sheet and every bit of food I ate had to be weighed.i was then frogmarched to the surgical ward and in front of me was a man that had his both legs amputated and the sister said that would happen to me unless I looked after my diabetes,that memory has stayed with me.Basically that was my start with diabetes,fortunately I took notice bar for a few teenage years and I have survived with a couple of minor problems.Most of what I have learnt about diabetes was from books and laterally from the Internet, I am still learning even after nearly 52 years of this bloody disease.

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Mine was similar experience being introduced to amputees... Hospitalisation etc and counting exchanges and paying for syringes and a meter that cost my dad £100 and was carried in a shoebox not a handbag.

It made me take note...sometimes when I see how newly diagnosed T1's are treated nowadays it appals me.

Replenish said:

I was diagnosed about 6 months ago when I was trying to register at a new doctors and had to give a urine sample. I was sent to the hospital but unfortunately as I was diagnosed on a Friday after 4pm no one from the Diabetes Centre were available to see me, so the staff nurse gave me some insulin and sent me home.

I have been back a couple of times but I cant go on the DAFNE until I have been diagnosed for a year. There is so much conflicting advice about how to handle T1, what I can eat, what I cant, how much insulin to take etc etc. So yes Jo I agree completely!

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Why not until a year!? I was diagnosed in June and got on it in October. I did have to chase being booked on it a few times mind

I have to wait a year too, they won't even consider booking it til a year after diagnosis

Butterflykeri said:

I have to wait a year too, they won't even consider booking it til a year after diagnosis

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That is crazy! Honestly.
My diagnoses and advice weren't good either. After 3 days in hospital I injected a rubber panda once and off I went to the pharmacy then home. Didn't even know my prescriptions were free. Didn't have all the right equipment on my prescription. Didn't see a diabetic team for 4 weeks and that was only because I kept phoning for a cancellation.

As for the DAFNE I find that outrageous! What on earth can their reasoning be? Mine was a local version called "CHOICE" and was much better to go early. To get info on sick day rules etc.

I'm outraged. Actual real outrage

Yeah mine is a local version too, but apparently I won't understand it yet....suppose I'll just work it out using guidance from here then!!

When I was officially diagnosed type 1 in early 1966 just aged 11, I wasnt at all well......raging thirst, thin, etc. As soon as I was admitted to a hospital ward, doctors came to see me and a lovely staff nurse injected me with this magic liquid called insulin which within 30-45mins, stopped the dreadful thirst and made me feel much better. The next day, I was shown how to do the insulin injection myself and within 3 days, I was taken for a walk around the hospital so that I could experience the hypo feeling and learn how to recognise it. , I left hospital after 7 days with a glass syringe, mediswabs, clinitest tabs and test kit and some literature from the BDA (now DUK) all about carbohydrate and how to count it in 10gram portions. The hospital nurses were lovely towards me and made me feel very special. I was never frightened into taking care of myself with insulin by seeing people with amputations but then again the nurses knew that I would inject as without insulin, I knew I would feel awful again with the thirst. I also didnt want to make my mum worry as I loved her very much.
I'm not sure what goes on in todays world with diabetes and diet advice but it needs to be much improved with clearer guidance.

Interesting thread and worrying that the same issues seem to be ongoing.

I was diagnosed in 1978 on one injection , fixed amounts of carbs, everything I ate was divided up into 10g carb exchanges so I could swap half a boiled potato for a small slice of bread. I morphed from one system of management to the next and still haven't done a carb counting course. When I started MDI in the 1980s it wasn't explained to me that the amount of insulin directly related to carbs consumed, it was more a try 4 units for your tea and see how that goes. Without the internet it was some kind of hit and miss black magic to me, if I didn't go hypo I was doing well.

Even starting my pump 14 years ago I was the first at my then hospital to use one and it terrified me, the DSN told me she was learning with me as I went along.

Only since I started using forums and gathering good information have I finally got it under control, way to late to prevent the serious complications I now live with but hey I've got a great HbA1c !

There does need to be a source of excellent, detailed advice including the incidence and progression of complications. If you don't know what you're dealing with properly then the outcomes will continue to be sub standard and for all our hard effort that isn't good enough.

Oh also I found a diary that I started on diagnoses (it lasted a day).
They recommended I are 40 carbs per meal.

@Butterflykeri that's totally ridiculous. how are you supposed to understand for that year without guidance? I found it so useful! I had no idea how to calculate my ratios and basal properly before. The sooner the better IMHO

Yes that's what I thought! But luckily I've worked out my ratios by keeping a diary and a little bit of trial and error. Plus now I'm following lchf I seem to only need approx 3 units of bolus a day x

Ive started a specific thread about it so as not to railroad this one

@Butterflykeri
There is an online free version of T1 carb counting http://www.bdec-e-learning.com/

Thank you

Emmotha said:

As for the DAFNE I find that outrageous! What on earth can their reasoning be? Mine was a local version called "CHOICE" and was much better to go early. To get info on sick day rules etc.

I'm outraged. Actual real outrage

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The thinking behind it I believe is this, they want you to be use to injecting multiple times a day and for you to be out of your Honeymoon Period(although this isn't always the case as we know), but I'm sure we have had members on the forum who have done the course after 6 months from diagnosis, I do wonder if it depends on the diabetes teams making the decisions, I really don't know..........

The thing is, as ur in honeymoon it is very important to know how to readjust ur basal and ratios as they change frequently. It is more than important than ever. I have had to redo mine many times and I wouldn't have really known how to properly

Emmotha said:

The thing is, as ur in honeymoon it is very important to know how to readjust ur basal and ratios as they change frequently. It is more than important than ever. I have had to redo mine many times and I wouldn't have really known how to properly

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Yes I agree, but for most newly diagnosed people they should get that support from their diabetes team, although as we know this isn't always the case.

noblehead said:

Yes I agree, but for most newly diagnosed people they should get that support from their diabetes team, although as we know this isn't always the case.

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I think "isn't usually the case" is more apt.
I had no tips on anything. Seriously. I'm not exaggerating. I did see a dietician bit that was about eating a third of a plate of carbs, not how to inject for it. They don't teach you any of the stuff from DAFNE on diagnoses. Adults diagnosed at the moment get very very little support I think (at least that was the case for me). It's outrageous

This thread is invaluable @Jo81hanson . It gets people talking about type 1 and all the worries and woes that can go with type 1.

Thank you

RRB

Emmotha said:

I think "isn't usually the case" is more apt.
I had no tips on anything. Seriously. I'm not exaggerating. I did see a dietician bit that was about eating a third of a plate of carbs, not how to inject for it. They don't teach you any of the stuff from DAFNE on diagnoses. Adults diagnosed at the moment get very very little support I think (at least that was the case for me). It's outrageous

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I'm not so sure, there's many people who get good support from the onset, I know sometimes people do have to ask for that support and that is why many of us always suggest that a newly diagnosed person contacts their diabetes team when experiencing difficulties.

noblehead said:

I'm not so sure, there's many people who get good support from the onset, I know sometimes people do have to ask for that support and that is why many of us always suggest that a newly diagnosed person contacts their diabetes team when experiencing difficulties.

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But it's not about "difficulties" it's about learning how to live with it

noblehead said:

The thinking behind it I believe is this, they want you to be use to injecting multiple times a day and for you to be out of your Honeymoon Period(although this isn't always the case as we know), but I'm sure we have had members on the forum who have done the course after 6 months from diagnosis, I do wonder if it depends on the diabetes teams making the decisions, I really don't know..........

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So what anout us years ago that got taught 10g = 1 exchange and 1 unit etc.. And to change our food choices etc... We still had honeymoon periods... Where we had to learn to adjust our doses ...

I was so good with my care 6 months after diagnosis I was referred back to my GP care... It wasn't until pens etc came out that I asked to go back to hospital care as I knew my GP wasn't aware of all the changes.

Care nowadays has gone too much out of control with no recognition that the way you are treated when diagnosed is going to set your learning up for your understanding and life ahead. Its no wonder so many T1's are not getting hba1c results as necessary.

Rant over....makes me grateful for the care I have had even more!!

Ps.. Never seen a dietitian though..