It seems that there might finally be a light at the end of our 'referral tunnel', though I'm hesitant to hold my breath about it!
I've spent I don't know how many weeks phoning the locum paediatrician's secretary to chase up Nipper's referral for the full on diagnostic assessment, being told that the replacement paediatrician will call me, nobody calls, and I ring the secretary again. This happened numerous times and each time I was given the name of a different paediatrician until in the end I asked for the details of who I needed to write to in terms of a complaint. This prompted a phonecall from the administrative manager of the paediatrics department. She was very helpful and called my GP to request that she writes a referral letter back to the paediatrics dept so that Nipper will be seen within the NHS target of 18 weeks. I really don't see why this rigmarole is necessary. Why couldn't the locum have just told my GP the same thing back in June, and why are there two systems for referrals (one from paediatricians with no target attached, and one from GP's)?
During the conversation with the admin manager I asked if she could pass along the sensory checklist which I'd sent in so that we could get on the occupational therapy waiting list, which I know has a wait of over one year. She initially said to speak to the doctors when Nipper has the diagnostic assessment but I got a bit pushy about it and so she said she'd see what could be done. I don't want to wait another 4 or 5 months before the checklist is put forward! Better to get on the waiting list and then cancel if it's not necessary. As it happens I got a copy letter from another paediatrician asking OT to put Nipper on their list so clearly he has enough sensory issues to warrant an assessment. However, I then got a letter from OT saying that only one assessment/advice appointment will be available due to the number of referrals they are getting. How crap is that? What happens if you need a follow-up?
So, the call was made to my GP on the 9th September and at the end of September I rang the GP to check what was happening. Apparently the referral letter was in the process of being typed. For goodness sake - how long does it take for a letter to be dictated and typed - 3 weeks it seems! I keep checking the mail to see if we've got an appointment for the diagnostic assessment but nothing so far. I think I'm going to have to start ringing paediatrics all over again.
It's now over 4 months since Nipper had his initial assessment and it's a bloody good job that I'm not holding my breath!
P.S. I managed to get my DLA form sorted and sent off - kind of depressing though isn't it, spending all that time thinking of all the difficult stuff you have to deal with day after day? I had a few low days with it but it's done now. And I remembered to photocopy it before it went in the post. Thanks for all the tips that were left in the comments on my last post.