Waiting for referral....Occupational Therapy

Z inspects everything close up.

I’ve been trying to get a referral to see an occupational therapist (OT) for Z for the last month or so now. After some research I thought it could help us, especially with sensory needs. So I set about the usual task of trying to pin down a professional to organise it. It’s never that simple though is it? I first started with finger poised on the call button to the GP before thinking to myself ‘nah, they’re impossible to get an appointment with’ so I backed away and instead contacted the Health Visitor (HV) service. I spoke to a lovely HV who suggested I contact Z’s paediatrician instead as it would most likely be faster - they explained they’d need to schedule a meeting/observation before deciding if an OT would be of benefit which could result in waiting several weeks at least before getting anywhere.

So that's fair enough, I’m pretty fed up of long waits. I called the paediatrician and left a voice message with their secretary. Knowing how busy they are I thought I’d just leave it a few days for them to get back in touch. A week later and still not hearing anything I thought I’d better start chasing this up. I managed to get in touch with the paediatric department only to be told the secretary didn’t remember getting my message…OK, COOL.

Anyway, turns out our paediatrician is on sick leave. So they suggested I called the GP (of course, should have just called in the first place) to get a referral and failing that to call back and they would see if anyone else would ‘take us on’. Off I trot to call the GP , this is why I was put off calling them in the first place. My record trying to get an appointment was 132 failed calls in one morning so you do need to be dedicated to getting that appointment sometimes!

I managed to get through! So we headed off into our appointment to see the doctor. I explained that Z is autistic and we’d like some support through occupational therapy. We chatted about what I was hoping to get from it and why I thought it might help us. But the question I got asked threw me a little ‘Who manages that?’ (in reference to his autism). I looked at her confused and muttered some kind of ‘um…’ and shrugged. I was thinking ‘I do. I 'manage' it' (not that that's even the term I'd use) but that wasn’t what she was asking. ‘Who is he under?’ …she meant what health professionals he saw. But it just got to me. There's a real lack of awareness out there that actually (unless I’m doing something wrong - in which case tell me now) there is very little support for autism parent's/care givers. There is nobody to ‘manage’ it apart from ourselves. Seeing the paediatrician for under an hour once every 6 months or so doesn't really count as 'managing' or supporting us. Of course I value that we get that service, someone I can ask questions to and send referrals for us. We go to SLT and have joined a few ASD groups but that’s about it. Everything else I’ve had to push for and I'm doing that pretty blindly, asking a few people I know that may be able to point me to something and going for it.

Even then in the appointment the doctor said ‘well it would be quicker to speak to your paediatrician.’ But after a BIG sigh (and probably an eye roll) I explained that I’d already been down that route I think she understood my frustration at again being passed along. She said she’d now write to the paediatrician to get a referral for OT (forever going in circles). I find it so frustrating that nobody wants to take ownership of anything. Nothing so far has been as simple as calling up and someone saying ‘yes, I’ll arrange that’. I have to push and justify constantly why I need support.

On another note after chatting about how I’d like to work on Z’s independence because he relies on me for everything the Doctor did then ask ‘and who looks after you?’. I thought it was good to see the doctor checking up on my mental health because it is bloody tough at times to keep everything going smoothly, although that's as far as the conversation went...

Looks like we're in for another long wait, but at least we're on the right track now.

Sarah x