I can relate hard to this feeling. I'm so happy for everyone that gets their award, I know what it's like having kids with SN and struggling to get help or anyone to listen. But this system is such a mess and it causes so much unnecessary stress. We really shouldn't have to wait 5 months and the system should at the very least allow you to see the status of your claim without spending 2 hours on hold. Why does everything have to be a fight for our kids? As if they haven't got enough to deal with.
I've been fine for the past 16 weeks but for whatever reason since week 17 (last Wednesday for us) I've just felt awful about it all. The idea that we can wait 5 months and be kicked back is just heartbreaking. We're depending on getting an award as we can't seem to get any help for our daughter on the NHS. She has Tourette's Syndrome and last May the tics just got so much worse out of nowhere. She was banging her head and hurting herself, the decline in the space of a week was shocking. Our GP told us there was no one to refer us to and if he did it would be kicked back because (in his words) "child mental health is a mess on the NHS". We even tried A&E in desperation and they said there was nothing they could do unless she said she was going to kill herself (she was 10 at the time!).
In the end I finally managed to get a different GP to refer us through to CAMHS but support for TS is area dependant and we're STILL waiting. We managed to scrape £350 together to pay for a private appointment with a neurologist and it was fantastic, she was so helpful and she has referred us on elsewhere but it's £195 for the first appointment and £130 for subsequent appointments. We just don't have it.
It's probably the horrible journey we've had so far but I feel TS is so misunderstood and I worry the person making the decision just won't understand it either. Then I get to blame myself for not explaining it well enough (yay...).
Sorry for the big moan, it just really gets on top of you sometimes, doesn't it? Thank God our school are supportive or I don't know where we'd be. I know we're lucky because not everyone can say that.
Anyway! My scan date was 11/10 (so 18 weeks tomorrow), 2 letters and 1 text so far. When I called on Monday I was told it was with the decision maker but no further update since then. I'm checking the bank every morning and jumping every time my phone goes off but no news yet. It seems not everyone gets a text message though (more inconsistencies). I will probably call again next Monday if there's still no news.