Where next

We’re in the thick of things at the moment and I’m hoping this is the low point and it gets better from here. On the one hand things have snowballed really quickly, on the other hand it’s been a slow burner over a number of years of battling to access any support.

Katie is currently unable to access school. She doesn’t feel safe and isn’t able to force herself in any more.

She is struggling with things she usually enjoys. She doesn’t want to go to youth group or singing unless she knows me or John are right outside in the car. She was scared to be left with her grandparents yesterday while me and John were at work.

She is regressing in skills we’ve seen her demonstrate and know she has. She is scared to canter at riding and she panics when people come too close to her unexpectedly.

Her fear of sick has escalated massively and she doesn’t want to do anything or go anywhere in case she is sick or someone near her is.

The deadline for her EHCP assessments is today. She hasn’t had an OT assessment because the waiting times are too long. I was told I’d have sight of submissions from other agencies but all I’ve seen is the Ed Psych report. The case worker we’d been assigned has left the local authority and no one told us. Our new case worker hasn’t contacted us or given us any updates. We had a meeting scheduled for 17^th October to discuss findings from the assessments and accommodations needed in the EHCP (assuming / hoping she gets one). That meeting has been cancelled. No one has answered my follow ups about the OT / asking to see any paperwork that’s been submitted / whether a decision will still be made this week given the meeting has been cancelled. Almost a year of paperwork, appeals, tribunal, and they’re still taking the piss.

I’ve been back to the GP for signposting anywhere else other than CAMHS as it’s been nearly a year since we had any contact with them and they’ve still never met or spoken to Katie. Waiting to hear from them.

I’ve looked into two private places to try and get Katie some help. One has a waiting time of 30+ weeks. One isn’t taking anyone on because their waiting lists are too long.

Where are we meant to go from here?