will they fund dd's treatment?

[needmorecoffee]

just been copied into a letter from the wanky PCT to the dietician who wants dd on the ketogenic diet.
it called 'Exceptional Funding'
We have to prove 'exceptional needs' ffs

What about the fact dd has had severe and intractable epilepsy for 4 years?
That the ketogenic diet has been proved to work better than drugs?

That the dietician is already employed so her seeing us isn't increasing anyone's budget cos we pay for the butter/cream and food?

If they say no, then dd continues fitting and loses her intellect. fucking great.

This is why you need SNAP asap.
It's too big to handle on your own.
Enlist some help. Free help.

its a medical thing, not education. We don't seem to have any keyworkers or co-ordinators.
And why do these wanky letters always arrive on a saturday to leave you getting more and more anxious and tearful
At this rate I will buy my own ketone monitor and blood kit and do the diet myself.

Don't have any knowledge to help but would Cerebra be able to advise? (hug)

could you phone up and ask the bastards PCT what they class as exceptional needs?

is there any NICE or prodigy guidance on the diet?

where would I find that out?

This might help argue your case

ta. want to start now, she's is having these jerks all the time

Unfortunately it seems Nice doesn't recommend the diet. This could give pen pushers something to hide behind.

If you get really stuck I'd try and get in contact with the docs in my previous link at GOSH and ask them for advice. Their hands may be tied, but doctors do usually want to help their patients and have little patience for bodies like NICE etc who are not working on a patient by patient basis.

but people do get it in this country. The dietician we saw already has 100's on the diet.
I'll bloody well do it myself if I have do.
I couldn't link that cos it requires subscribing.

I know lots of people get it,- I know someone who did- under the guidance of paeds in Bristol iirc- but if it isn't NICE recommended then it becomes more of a lottery.

I read an article recently (in a ?magazine somewhere- not the most reliable source) about getting exceptional funding (for a cancer treatment). It seems (from what I remember)that a PCT can refuse to fund non nice recommended treatment from its ordinary budget and then request an application for exceptional funding to be considered on a case by case basis for all non-NICE approved treatments. The guy leading the campaign said that in some areas all/most application for exceptional funding were approved and in others very few. Any way it said that each case had to make a compelling case for funding. I am sure you will need help with this! There is also (and forgive me I know it is the last thing of importance to parents) the financial side might argue itself- ie if the treatment works the other costs could go down (less medication, etc) Good luck.