Friday, 31 May 2013

Being pushed from pillar to post

So, apparently getting an ABC assessment done for J, to finally determine whether or not he has dyspraxia, is actually the hardest thing in the whole entire world.

No, really.

The Consultant Psychiatrist asked for it to be done over 18 months ago now, and it seems to have turned in to some sort of farce. Fast forward another 14 months or so and it still hadn't been done. So the Community Paediatrician who did J's statutory assessment repeated that it needed to be done, asked me to ask school to do it, and to tell them that they should refer the results straight on to Occupational Therapy. The reason for this was that if they sent the results to the Paediatrician he would just get put to the bottom of the pile, and be referred on to OT when he got to the top.

So an ABC was done, but school can't score it (i.e. know whether or not it confirmed that J had Dyspraxia) and there weren't any Occupational Therapists any more for them to be able to refer him to anyore. So I phoned the Paediatrician's secretary to find out who this mythical OT was. She said she would get him to phone me back. He never did.

Fast forward a couple more months to when I had the appointment with the OT at CAMHS, to discuss J's sensory profile. But this OT, it had previously been made clear to me, wasn't a usual OT. They were one specialising in mental health. So not able to help with the Dyspraxia issues. This OT was brilliant though, and emphasised that it was important to get the ABC done, so that the relevant support could be started as soon as possible if J does indeed have Dyspraxia. They also told me that it was possible to self refer to the Children's treatment unit at our local hospital (which includes OT's and physio - Paediatrician also thought that J may be hypermobile).

So, I self referred. Yesterday I had a phone call saying that, actually I can't refer for physio, could I get a letter from the GP? That will be the same GP that has had naff all to do with him other than telling him to pull himself together 2 days before we ended up in A&E and under the care of the CAMHS crisis team.

And today I had a letter from the OT department of the Children's treatment unit saying that they had been in touch with CAMHS, and seeing as he had had contact with an OT from there, we wouldn't be getting anymore OT contact from them.

So back to being pushed from pillar to post. Yet again it will have to be me that gets on the phone on Monday morning and has to sort it out. Because no one else can be bothered, but I have to be.

All I want is for someone to do an ABC assessment and give us an answer. IS IT REALLY TOO MUCH TO ASK??



8 comments:

  1. Apparently so, and I can only assume you are yet again another victim of the fact everything has to have a budget and no-one wants to spend theirs or cross over into another territory. It does seem absolutely ridiculous that everyone you speak to agrees the assessment is absolutely vital and urgent, yet getting it done is a joke. I hope it resolves soon.

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  2. I am sorry to hear your story. We've had similar problems getting tests done and therapies started. I hope that something comes through for you very soon!

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  3. Sorry to hear this. My son had to get his dyspraxia diagnosis from the OT so I would imagine they are the ones to keep pushing at.

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  4. The system would appear to be broken! So sorry you're having to go through this! I hope you can get it sorted soon!

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  5. Round and round you go, when all you want to do is get off, with him still safe. I hope you get the help you so deserve, and soon.

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  6. I am so sorry to hear this but can totally sympathise. My boy isn't even going to the "right" school because the people he needs to see haven't seen him, so he hasn't got the right label on his statement. I have no idea what ABC is - but am waiting for a full sensory profile. They've not decided that he has SPD but I've been sent on courses about it to help him - ridiculous. Hope all is sorted your end very soon.

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  7. What a pain :(( It must be so frustrating x I hope you get it sorted xxx

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