Diagnosis Part Two

Part Two - The long wait.

CAMHS is a well needed but awfully over stretched service here in the UK. I knew it could take a long time to get a diagnosis and I’m incredibly impatient (which is ironic because I have to be the most patient person in the world with Z). Our appointment was set for January 2019, and just in time for the big day, Z came down with Chickenpox. He really struggled through it, so of course we had to cancel the long awaited appointment for initial assessment. We were pretty gutted to lose that slot but getting Z well and making sure we didn’t pass anything on to other kids is most important. Luckily, we got rescheduled for the next month so we didn’t have to wait too long to be seen.

Initial assessment is quite daunting, I didn’t know what to expect. We were told to bring Z along again to the appointment which is always a worry as he can be quite unpredictable in new places. He coped quite well and obsessed over a toy truck he found in the waiting room. We went into a room with two people doing the assessment, one observing while the other took all our notes and history.

After our appointment we were given questionnaires to fill in at home and a copy for nursery too. I don’t exactly remember what was in them but we had to rate his behaviour and development. It was actually quite hard in places to rate them because a lot of the questions didn’t apply to Z due to age or speech ability. So when we heard back a month or so later we were confused to hear that his score was quite good on paper. However, because the lady that had assessed him had met him, she wanted to push for ASD assessment regardless, which luckily was agreed to by the CAMHS team.

But then came the next wait. We were now on the waiting list for the next stage of assessment. A 30-35 week waiting list which would put us right at the far end of the year to be seen. We were told that we’d need to be seen by several specialists. It would be over a few different appointments where we would get seen as a family, then just myself and Daddy Z, and then another appointment just Z (and perhaps one of us in the room because of his young age).

I’d been told that diagnosis could take years to get. The 30-35 week waiting list was just the start. That was just the wait to book our first appointment. I had no idea how long we’d be waiting after that to be seen, how long there might be between appointments. By this point Z was now three years old and the thought of school was starting to loom. Although a year away, I was determined that I would have everything in place to give him all the support he needed for school, to give him the best possible start that I could. I needed to be proactive, and that waiting list was constantly on my mind.

Sarah X