Type 1 - what's missing?

Spiker said:

Got to say @Brunneria darling (nice outfit by the way!), I thought the same thing - why does it seem that every other research programme or outreach activity or whatever seems to be targeted at the young? Now I have nothing against the young - many of my friends used to be young - but I do wonder if the allocation of funding is properly balanced? Are young people really worth more than us mature types?

Then I remembered that NICE weights the net benefit of almost every treatment or intervention by multiplying it by the expected remaining life span of the person treated. So if we all live to 80, a 10 year old with 70 years to live is 7 times more "benefit" to treat than a 70 year old with ten years to live. Compared to a 20 year old, a 40 year old is "worth" two thirds and a 60 year old only one third. In my case I'm worth about 14.5%. Strangely that's exactly the same as the alcohol content of my massive bottle of DRINK!

Click to expand...

Well that would make sense Spiker going by what you've said about NICE and how funding is allocated.

I was diagnosed aged 18, it was like my world fell in and only wished there was more support around then as there is today, I cannot begin to imagine how it must feel to be diagnosed much younger than I was and have to deal all the problems of schooling and such like, therefore I do think that money spent is worthy to be spent on the younger generation rather than the older.

To the OP, as Tony Blair said in one of his campaign speeches, it's EDUCATION EDUCATION EDUCATION that is missing.

Aw shucks @Spiker , just a lil' something I threw on

A friend of mine's son was diagnosed at 11 years old. Of course, the whole family were in shock, and panic, as is perfectly natural. Looking back, she (the mum) says how unbelievably wonderful their diabetic team were. Anything. Anytime. All questions, no matter how small. Nothing too silly.

This went on for a while, he grew, the family settled in. It became normal. They needed less support.

But she was still shocked when he hit a certain birthday, and was moved to the adult way of managing the situation. Suddenly appointments were elusive, delayed and moved without discussion. Prescriptions much harder to arrange. He got discharged by letter from the hospital diabetic clinic and bounced back to the GP for handling - twice.

I completely understand why - and so does she - but she was still shocked by the transition. And his BG control deteriorated significantly, as a result.

Buwhahahahahaha !

Love that, @Jaylee !

And a point - more and more adults are LADA. I suspect that they have always been there,and it's not a new phenomena , but the health system has struggled for a long time with the dogma of " Type 1 diagnosis only happens with children" . It's still around today ! I suspect we will never know the actual figures for misdiagnosed adult Type 1 unless the NHS calls in the services of a medium A slant towards resources for Type 1 in children only reinforces this myth.

Signy

@Heathenlass, how many "Type 2, insulin dependent" people are misdiagnosed LADAs, we will never know.

What I have always felt since being diagnosed aged 12 in 1978 is a complete lack of acknowledgement from medics that there is no "getting it right". I know things have moved on massively since the 70's and I really hope children are not treated in the same dismissive way.

The vast majority of us do not set out to destroy our bodies in record time yet a yearly consultation where all that is ringing in your head is a dismissive comment such as "not good enough, try a bit harder" is completely demoralising and doesn't acknowledge that blood sugar is an absolute pig to control. It has taken me decades to realise that my efforts at controlling my blood sugar will result in varying degrees of success and that is just the way it is. There is no getting it right, but there is such a thing as doing a good job and that really should be acknowledged what ever age you are.

I was 31 at diagnosis too, completely confused the care team

Hi,
I was 11 (just finished my year 6 SATs) when I found out I was diabetic and although I couldn't fault the team I had around me (big up for paeds diabetes team circa '99) they couldn't provide me with everything I needed.

Being told your whole life is going to be turned upside down and your not going to be like other kids is probably the worst news a girl just hitting puberty can hear when everything is already magnified. I now can see that I went through the typical grieving process of denial, anger etc but I don't feel that was ever properly recognised. Which has actually had long lasting effects, effects I'm still overcoming as I type this 15 years later. It's a very isolating experience especially when you have no one to turn to that 'understands'.

That's my experience any way. It's a big and scary change for children and young people and I'm not just talking about the needles.

Hope this helps,
Michelle
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