11 October 2010

Light at the End of the Tunnel?

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.



  1. Thanks for keeping us posted Tilly. Hopefully progress will be made for you guys soon.

    Much love. x

  2. 4 months?! That's AWFUL! My in-laws (both GPs by the way), said the only way to get anywhere on the NHS is to moan, moan, moan and pester, pester, pester. I'm sure you've done your fair share of moaning and pestering though! Good luck and I wish you a speedy process from now on. xxx

  3. I would go with Alma, I was literally ringing our local CAMHS center weekly until they got so fed up of me, we were seen and then got so fed up again of me chasing the for assessments that we got them as well, but it did literally take phoning every single week. I also made a note of the time of each call, and each time I phoned realed off the list of how many I had made and to whom, and if anyone was ever stupid enough to say Dr so n so would deal with it on x day, I noted that, gave them 2 days and then rang and chased. it is a nightmare, totally wrong that we parents need to do this but does make them realise that you wont forget! I only havent done this for a a full asd assessment because I knew we were moving, Yorkshire wont know whats hit them!

  4. My thoughts are with you. It seems that the hoops you have to to jump through are almost impossible....but here is hoping that the end is in sight.

    Have a giveaway going on over at my blog if you're interested in getting in on the action. One comment on any of my posts gives you an entry....the more the comment, the more entries you get xx

  5. I am very sad to say, welcome to life with a special needs child.

    The life where you spend all your time phoning, writing, screaming, crying and generally stamping your feet in an effort to get the help your child needs. It can make for a very stressful existence if you let it get to you.

    I fought long and hard for 7 years before anyone would even agree to assess Ana as it was 'highly unlikely that she has autism'. Currently we're still waiting for the agreed Minor Aids and Adaptations to our home to start, over a years since the grants were agreed.

    I can't promise it will get any easier, but the difference it makes when you finally get to the end of the tunnel can be life changing.

  6. Ditto what the other posters say. If it's any help, have a look at this post - it's about Ireland, but it's relevant in every country I think:

  7. Oh it's all such a hassle isn't it!

    My only advice is to keep jumping through the stupid hoops - your little nipper is worth it!
    loving your blog btw :)
    Fi x

  8. You have NO idea how much I associate with that post!! I could have written it aside from the diagnosis. It can be a bloody shitty boat to be sitting in sometimes but it is really nice to know that there are some new chums sitting in the same boat with you who can help you along the way. Get in touch whenever you want xxxxxx


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