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FFS - so frustrating - hospital referrals and being passed all over the place!

2 replies

alloalloallo · 22/06/2021 13:26

My daughter has Tourette’s.

Over the last few months she’s been having these odd episodes where she seems completely absent - totally blank, staring into space. Lasts a few seconds and then she sort of jolts herself back.

Spoke to the paediatrician who decided to refer her back to the Paediatric Neurologist as they appeared to be absence seizures.

3 months later, we get a letter to say that it’s nothing to do with neurology, we need psychiatric input, nothing they can do.

DD has an open case with CAMHS - spoke to them who can’t work out what or why it would have anything to do with them, go back to neurology.

Speak to neurology and wait 2 months and they eventually come back to say that because DD’s Tourette’s isn’t medicated, it’s nothing to do with them, speak to CAMHS - CAMHS say it’s a neurological condition not a mental health issue (which I agree with), def need neurological input not CAMHS

For 6 months we’ve been pinging backwards and forwards. The paediatrician’s secretary is pulling her hair out, the paediatrician can’t work out why the neurologist thinks this has anything to do with CAMHS and why they won’t see her.

I’m not particularly worried about it and neither is the paediatrician or DD, but she starts college in September so this kind of information is important to ensure she gets the right help, support and access arrangements so it’s incredibly frustrating

Anyone else have any experience with this? I have no idea how to resolve it.

OP posts:
Sirzy · 22/06/2021 13:31

I would put in a formal complaint to the trust. Outline everything and explain the impact that being passed from pillar to post has had.

Sadly I have found that a formal complaint often has a miraculous impact of appointments appearing!

alloalloallo · 22/06/2021 15:28

Thanks

Yes, I’m writing a complaint at the moment.

Its just so frustrating - I understand if they don’t need to see her, but it’s like they’re not even reading the referral.

We wait months for a response and then the reply doesn’t seem to relate to the original query.

OP posts:
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