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PDA Diagnosis - NHS or private and where?

4 replies

Tieni · 28/06/2013 21:33

Hello everyone,

This is my first post in special needs (although I have been lurking for a month or so Smile) so I'm feeling a bit nervous and don't really get all the abbreviations yet, so apologies if I make a mistake!

I've always known DS (3.3) is a bit 'quirky' and about a year ago started thinking he may have ASD, but when I googled autism and aspergers, he didn't seem to quite fit. I read a description of PDA on a link in a post on Mumsnet and I was Shock as it described DS almost exactly.

Some of the comments I've read on this board from parents of children with ASD also hit home and I've found myself smiling and nodding at my phone in agreement. It just helps to know others are going through it - until I read the PDA info I blamed myself for DS's behaviour and was really unhappy.

Sorry, I have just realised what a huge introduction that was; apologies and here are my questions:

We've just been recommended a paediatrician who can diagnose PDA, outside our area (but not too far away), however she's private only and charges £800 all inclusive for an assessment and diagnosis (including ADHD). The £800 doesn't cover the psychologist, which we would have to pay for as well.

We are lucky enough that we may be able to find the money or save it in a few months, but I've been googling and have seen that the LEA often don't take a private diagnosis when they are doing a statement (is this the right term?) so would it be a waste of money, particularly bearing in mind that we (and his nursery staff, who are amazing) are implementing PDA management strategies which are helping?

There seems to be very little information on PDA diagnosis within the NHS, so a further question is how do we go about finding a sympathetic (to PDA) paediatrician (I've tried the NAS website and may have found one place, but there's not much information about it)? From my own health issues I've found getting the right consultant is half the battle!

I've also heard about the centre in Nottingham and Great Ormond Street - can we apply through the NHS for this and are we likely to be successful?

The main reason we want to get a diagnosis is so that when DS starts school he gets the support he needs (at the moment I don't think it would need to be anything major, just quiet time when he needs it and time in smaller groups) I have no idea how this works in practice as he's the elder DC and my last experience of primary school was when I went 20-odd years ago, so I could just be wishful thinking here! We have a year to do this, so can take a reasonable NHS wait again, I could be wishful thinking.

Finally, you will be glad to read, if you've made it this far, we are based in North Birmingham - does anyone know of any Birmingham-based NHS paediatricians who are sympathetic to PDA?

Thank you if you have read all that and thank you even more if you're able to reply.

OP posts:
2boysnamedR · 28/06/2013 21:44

I can't help sorry as it was my first post last week ( well I did get great advice here three years ago when we started with salt. I don't the acronyms either lol! Salt goes on your food right?

Surrey will not accept a private diagnosis but I feel I might go down that road to give me peace of mind and not tell the school or nhs but get pushing them to diagnose him.

It's all so complicated!

notapizzaeater · 28/06/2013 21:59

It's very complicated here too - Calderdale - we won't accept a private diag, but they do not recognise PDA - catch 22 !!!

I did ask the EP if I had breast cancer and a new type would you tell me I didnt have it ?

2boysnamedR · 28/06/2013 22:33

Oh god love that analogy. How about 'if you find a lump ignore it and hope it goes away' I say things like that to the nhs carers as I like to see them struggle to counteract my logic, which really is their own

namechanged2335 · 29/06/2013 06:23

Hello
On the national autistic society website there is a good description of PDA and that it is increasingly recognised as part of the autistic spectrum but I think that it is important not to get too bogged down in names but rather better to work out what his needs are likely to be and how you can get them met
One option is to go to your gp and ask for a referral to a community paediatrician and take it from there
GOSH I have heard is only somewhere you can go for 2nd opinions thought I could be wrong
If you want to see someone privately but whose opinion would be accepted by an LA I have heard Daphne Keen mentioned on here, no personal experience, but as she also works for the NHS her private opinion holds (from what I have read on here); massive wait to see even privately - also depends where you live!

If it were me I would get a GP referral and also book for DK (could always cancel the latter if NHS route worked out in the meantime)

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