How might we get a diagnosis outside the NHS?

[TooSpotty]

Sorry, this question must have been asked many times before so if a link to another thread is the most appropriate response, please do tell me!

Very briefly, DS is 11 and yr 6. Primary school raised concern about social communication and emotion management. Commissioned a private SALT report which recommended referral to social communication clinic. He's also seen by CAMHS. Both CAMHS and the community paediatrician say there's no need for a referral. The paediatrician's report describes a child that neither we or the school recognise.

We are waiting to see how secondary transfer goes. He's on an IEP and there will be SENCO transfer. But I was talking to a SALT recently and she was astonished he has no diagnosis or real support. (We have family therapy with CAMHS that is, for various reasons, not great, and the art therapy he was having is ending.)

Can we go outside the NHS channels to get an assessment? And if so, where? We are in London.

Margo Sharp,a specialist SALT? I've been to her workshops and always been very impressed by her knowledge of social communication problems (and what was previously known as semantic-pragmatic disorder).

Here's a link to her on the ASLTIP website:

helpwithtalking.com/directory/member/743

my daughter is seeing margo in about 10 days time so can let you know how it goes......

Oh, thank you. I'll look into her. And it's OK to self-refer?

Yes, you can just call Margo and chat through what you need/why you need it.

She dx'd my dd2 earlier this year. Was about 7 weeks between first contact and assessment.

Great, thanks. And this bit is a dumb question I expect. If we get a diagnosis, what on earth is our next move? We'd like to know for strategies to help him, at home and school. There's no question of a statement - the primary school have told us that - so what else?

I would take no notice whatsoever of what a school says about getting a statement. They are likely to follow the LA party line, not what the SEN Code of Practice says.

What and see what any diagnosis/report says first.

I would agree with you, but this was in the context of a discussion about how frustrating the LA's refusal to refer was, rather than an attempt to put us off, if you see what I mean.

Serious chats here last night after sports day saw three senior teachers all forced to spend their time dealing with DS's reaction to his team losing. We got the impression that they've just adjusted to him needing (getting?) this level of attention and support without really noticing. So we will call Margo Sharp next week, and see what she thinks most appropriate.

Thanks for the luck! After lots of talking we decided to see how the introduction to secondary goes, and go down this route if the first few weeks are really throwing up problems. There isn't time now to get anything sorted before he starts, for one thing.

If you think he needs a statement or a proper assessment via school I would just ahead with it yourself regardless. Many us here have. Ok so it's a fight but I was told never to a statutory assessment, applied, appealed - got it. No to a statement and appealing that. It's pretty standard I'm afraid

Oh, I know. We've gone through it all before! He's the second.

My husband's thinking is that we're not sure how much of his behaviour is ingrained patterns with the current school. He would like him to start secondary, and get a fresh perspective on him from the new school, before going down the assessment route. On a practical level, it would be hard to actually meet a professional before September for various reasons, and it would be useful to feed into an assessment how he's coped with the transfer.

We absolutely will pursue an assessment if it seems necessary. I'm a serial name changer but I have a long fighting history behind me. Last time round we didn't struggle at all to get the statement, which is why I'm a bit clueless on that element; the big battle came afterwards.