Anyone else awaiting a DLA decision at the moment?

[Siphonophore]

My first post on mumsnet, been reading a lot though over the last few weeks, mainly on this board. Great source of info for worried parents googling

My youngest has a rare condition that causes episodic ataxia and vision problems amongst other things. He is 3 and attends a nursery school who have local authority funding for one-to-one care for him there.

Have considered applying for DLA many times over the years (DS has had the condition since birth) but until recently have never really had any extra costs associated with it so didn't feel the need. More and more now we seem to be faced with various expenses for him, with more likely in the future, so decided to apply.

The first application went in at the beginning of September. The decision to decline it was made within two working days. Not eligible. I must admit I was quite shocked as from the perspective of all who know him, there is no question that he requires more care than another child his age. I must have flunked the form writing.

Reconsideration requested, and a letter sent (with help from a friend professionally experienced) detailing why. They have had it for nearly 3 weeks now, after the super quick rejection last time I am taking no news as good news- hopefully they are at least looking at it properly. If/when we are declined we will appeal.

My husband had a DWP brown envelope in the post today... my heart was in my mouth as I picked it up and flipped it over to see it wasn't addressed to me. It's a horrible feeling waiting, I'm not even sure why. I guess when you are fighting for your child it is hard not to take it all incredibly personally?

So yeah, just wondered if anyone else was in the same boat, waiting for a DLA decision?

im sort of in the same place. my son was awarded a few years ago but his needs changed so much I have asked them to look at it all again. I sent in over 100 pages of reports and 20 pages of extra stuff I wrote at the beginning of sept. got a letter last Friday to say they have wrote to his paed who doesn't really know him that well - spoke to the paed secretary today and was told his file was in with her so they are assuming its because the letter has come in but they couldn't check as she was in clinic. asked if paed could phone me but heard nothing and also asked if I would get a copy but the secretary wouldn't commit to it. half of me wishes I had just left it well alone but his needs have substantially changed! the silence is the worse part - its a shame we cant track it online like you can with a family fund application

That does sound stressful and frustrating bjkmummy! Our main consultant has moved out of the area and left the profession so my DS's new main doctor (and the doctor who would be the one to write any reports) has never seen us or come across the condition before. Haven't heard that they have contacted anyone yet though.

I agree the silence is the worst bit! Having been declined so incredibly quickly first of all I am nervous every time the post arrives, yet we might not hear for another few months!