Not enough education on type one DB

[Jo81hanson]

Don't know if anyone else feels the same but there's just not enough education given today when the first diagnosed with type one DB I was packed off with my insulin and told you do this you don't do that you eat this you don't eat that and left to get on with it don't know if anyone else has got the same kind of neglectfulness when they have been diagnosed think this was what made me rebel and fight against my diabetes for so long

 

[noblehead]

I'm not sure what its like now for those who are newly diagnosed, but when I was diagnosed 30+ years ago I was admitted to hospital and wasn't allowed home until I could inject, test for glucose/ ketones and carb count (using exchanges back then).

There's a course that you are eligible to go on after 6 months of diagnosis, it's called a DAFNE course and it teaches you to carb count as well as other aspects of type 1 diabetes management, to get an idea what the course is all about have a look at the following, its an on-line version of the DAFNE course:

http://www.bdec-e-learning.com/

Try and educate yourself about type 1 diabetes, a good book to start is Think Like a Pancreas by Gary Scheiner, but do agree that more education wouldn't go amiss going by what you've said above.

 

[novorapidboi26]

This was pretty much my experience, but my diagnosis was a way back in 1999/2000, so even the diabetic team were not really clued up either.........

this continued for many years after, I even moved clinics a few times and it was the same throughout.........

then one day the dietitian in my clinic, who I never usually see introduced me to MDI and DAFNE, from that day forward my diabetes would never be the same.......

 

[jack412]

I agree, the number of people who are given a script for insulin and sent home is silly and it happens in australia too.
I have often posted these kids, basic how to cope links and I am astounded at how many T1's find it valuable. it makes you wonder how even the few get a1c 5-7%
SNDRí Paediatric Carbohydrate Counting Resource
Overview of Carbohydrate Counting and Intensive Insulin Therapy for Paediatric Diabetes , An Introduction to Carbohydrate Counting , Carbohydrate Counting – The Next Steps , Carbohydrate Tables , Carbohydrate and Blood Glucose Diary

 

[Replenish]

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!

 

[novorapidboi26]

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!

You should try and ask for some guidance through the DAFNE basics by one of the team.........that's what I done for about a year when I changed over from twice a day Humulin M3 to Lantus and Novorapid...

I realized I had a lot to learn when I finally went on the DAFNE course but during that year my day to day control got significantly better overnight......

 

[lely]

I do feel the same @Jo81hanson.
I was diagnosed 7 years ago and only though pestering my gp the last 12 months I was put on the carb counting course.
I found I was never given any real advice about being ill and dealing with diabetes, it was only before Christmas I was ill and posted on here and got a great response and info on steps to take, and had my Bg under reasonable control withing 2 days, normally I'm off the chart one way or another for weeks after illness.
Also posted yesterday about something I'd never understood and got great advice then.
I've learnt more of others on here than my diabetes team.
I just don't see why all this info is given within months of diagnosis, carb counting, nutrition, illness and excersise.
And of course coping techniques as it's emotionally draining for all involved.

 

[tim2000s]

I'm surprised to hear it has gotten so bad. I was hospitalised for stabilisation, and during that period my family and I had time with a dietitian to go through carb counting, how illness worked, blood testing, etc, and of course the infamous orange injections, which I declined and used my thigh instead.

It doesn't sound at all helpful now though! Could it be dependent on PCT?

 

[Spiker]

They could really do with a good NHS online resource for diabetics, clearly separate for T2 and T1.

I can see some reasons for a different and simplified technique being taught for the first year. What I don't see, haven't heard of, is effective outreach back to the newly diagnosed after the first year, to give them the education they need for the rest of their life, after the first year. This seems to be a very common failing.

 

[Robinredbreast]

Diagnosed in 1989, a week in hospital, not told a great deal though, especially about hypo's and hypers. My first injection :- I was told I had to inject myself, felt very scared as I'm not the nursey type, injected in my leg whilst being watched, not to bad, but then blood was trickling down my leg, I did look concerned and was told I had just hit a surface vein and that was it. Because I was hundred of miles away I was advised not to travel back ( i travelled up on my own by coach). But I did feel a little bewildred and just left to get on with it when I was discharged
I have mentioned this before, when in A & E in August, due to an accident, the nurse, who was taking down my medical details ( told her I was diabetic), asked if I was type 2 and not 'what type am I ? so it would appear the nurse didn't know there was a type 1 I was taken aback, and my friend who was with me looked astonished, just goes to show doesn't it.

RRB

 

[Spiker]

My personal experience was: diagnosed in 1995, put on a so called basal-bolus regime but with fixed doses, told to adjust "if needed" but not taught when or how to adjust, not taught to carb count or that bolus doses should be proportionate to carbs, and then cut loose for 15 years.

I was eventually taught carb counting and DAFNE but I was only targeted for this "structured education" by my hospital clinic because by Hba1c was out of guideline levels and deteriorating year on year. So that's no prevention and the "cure" being offered 15 years late.

 

[tim2000s]

@Spiker - that's very much what I was given on the changeover to MDI. Basically, you are eating x amount of carbs so this is how you should treat yourself. No other guidance. Fortunately, due to the previous carb counting, my family and I were able to make the logical leap that if I increased carbs, then I'd need more bolus and vice versa!

 

[shedlover111]

My personal experience was much the same..........After 4 days in the hospital after diagnosis I was simply given a five minute talk on the wheres and whens of injecting and then told " you can go home when you have injected !!, (even the nurse couldn't work the pen) we sort of worked it out together and off I went................Oh and told eat many, many, carbs!!..................I was not happy bunny!!....... found GP about as much use as a stick in a sword fight, Diabetic team when I finally found out they existed were, I must say, keen and helpful but appointments were far too infrequent and if I phoned for advice I could never get through.................I have really based my self treatment on info from this forum and three years in I am fairly confident and well controlled.

This situation really needs to be addressed, unless you have been through this you cant understand the Fear and confusion and terrible feeling of loneliness that this lack of care leaves one with!! and another !!

 

[Robinredbreast]

My personal experience was much the same..........After 4 days in the hospital after diagnosis I was simply given a five minute talk on the wheres and whens of injecting and then told " you can go home when you have injected !!, (even the nurse couldn't work the pen) we sort of worked it out together and off I went................Oh and told eat many, many, carbs!!..................I was not happy bunny!!....... found GP about as much use as a stick in a sword fight, Diabetic team when I finally found out they existed were, I must say, keen and helpful but appointments were far too infrequent and if I phoned for advice I could never get through.................I have really based my self treatment on info from this forum and three years in I am fairly confident and well controlled.

This situation really needs to be addressed, unless you have been through this you cant understand the Fear and confusion and terrible feeling of loneliness that this lack of care leaves one with!! and another !!

Yes I felt alone too, (a bit because I was hundreds of miles away from home, my children were upset when they were told as my family life had previously changed), so not that great at the time, but I just got on with it.
What concerns me is the lack of knowledge that some health care professionals have regarding type 1, as I have experienced.
Also, I feel for the younger adults and teenagers who can find it so difficult and just want to be 'normal' like their mates and then things can spiral out of control with potentially diastourous results. At times, it ain't easy

Best wishes

 

[Spiker]

Yes it is a very lonely business. Nothing is more valuable than finding people who are going through the same problems and can share their experiences. Whether that is face to face in DAFNE or online on this forum.

 

[Robinredbreast]

Yes it is a very lonely business. Nothing is more valuable than finding people who are going through the same problems and can share their experiences. Whether that is face to face in DAFNE or online on this forum.

I wish I had a computer all those years ago, that year(1989) was not a nice one. But thank goodness for technology and this great forum

RRB

 

[yingtong]

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.

 

[noblehead]

I wish I had a computer all those years ago, that year(1989) was not a nice one. But thank goodness for technology and this great forum

Me too, so much information at our fingertips.

@yingtong, your experience on diagnosis was truly frightening, but you've come a long way since then.

 

[Daibell]

HI. I think your experience is quite common and reflects the under-resourcing in the NHS and the way information is controlled and diseminated. I was originally (mis) diagnosed as T2 and still listed as such so have never been offered DAFNE. Fortunately when I needed insulin I was treated by a superb DN and I was very lucky to have someone who had previous experience from the Diabetes clinic. She gave me her email address etc for any problems and monitored me for a few weeks to check all was OK. I was shown carb-counting in 10 minutes and given a food leaflet; simples. It really doesn't need DAFNE to cover the basics; just a sensible amount of time in the surgery or clinic within a few weeks of going onto insulin. Sadly many surgeries don't/won't set aside the time and many nurses know little about diabetes. Do ask any questions on this forum as there are so many with experience of insulin; it has helped me. I wish more HCPs would point people to these forums if they can't do the job properly themselves.

 

[Robinredbreast]

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.

So glad you are still here yingtong, but what a frightening experience for you in those 'dark ages,' just goes to show how life with type 1 was like then Onwards and upwards eh........ with positive steps
I am always learning too.

All the best RRB