Referral to 'joint coordination clinic' to test for dyspraxia - how long would you expect to wait for appointment?

[13lucky]

Hi there,

I've posted a few times in the past about my dd who has hypotonia and hypermobility...and who I have suspected for a long time, has 'something else' on top of this but unable to put my finger on what it is. She is very emotionally volatile and immensely rigid where routine is concerned. She is a gorgeous, gorgeous little girl, but she is also incredibly frustrating and often does not know how to behave 'appropriately' in company, ie she cannot amuse herself for a moment without constant attention, will constantly interrupt me when I am talking to a friend and cannot cope with new things or having to stop one thing to do something else. She often has complete meltdowns and just seems to find life very difficult.

She seems to have sensory issues with touch and sound in particular - if she brushes past something or someone unexpectedly touches her, she says 'ouch' very loudly and can be distressed, and she often cries at unexpected or loud noises. Her teacher has commented on her difficulty to grip pencils properly, and her physo referred her in February to the joint coordination clinic to assess her for dyspraxia. I have chased for this appointment bearing in mind it is now July and she was referred in February. Emails have gone back and forth, often with the physio not replying for a couple of weeks and yesterday I received a letter in the post saying they extimate that they will probably see her around November time (that will be 9 months after they referred her). To me, this seems an awful long wait, but maybe I am being naive. What do you think? She is just 5 by the way.

That seems a long time to me, but I'm sure others have had similar waits. Our longest wait was for SALT for the initial appt and that was 6 months. Very frustrating, 9 months is a very long time for a 5 year old.

Is the clinic with OT's? They seem to be very short staffed a lot of the time, well round here anyway and according to DS's OT as I understand it, it is a national problem.

I think we waited about 9 months. We got a letter saying it would be a while and I think the appointment ended up being sooner, not by much but a bit.

as she is already seeing a physio (presumably for the hypermobility etc) do you have a developmental paed on board? they can arrange a multidisciplinary assessement if they think it would be appropriate (although there are often long waits for this too)

9mos is unfortunately not unheard of for ot type clinics. getting in the door is the most difficulkt bit though. once you are in, usually it's fine. it's the getting-in that's tricky.

just 5 is reasonable to be assessing for dyspraxia though - and possibly quite early, so i wouldn't worry. plenty of time to try out pencil grips and get some exercises in. i'd be tempted to read up and get on with some myself, but it isn't unusual for dyspraxis dx to be given as a result of school.

if you are concerned about other issues, then i'd be pushing for multi-discip assessment tbh. (and def referral to ot for sensory issues)

Unfortunately, 9 months isn't that long for some of these specialists working in the public health system, unless you can afford to see someone privately.

In our local area here in WA, there is a 9 month wait list to see a paediatrician, 12 months to see an ed psych and 15 month wait to see an OT or SALT!!

don't forget if you are feeling especially rich, you can access some assessments and services privately. some people do decide that nhs waiting lists are too long and decide to try some other routes as they feel waiting would not be beneficial to the child. obviously most people can't afford that luxury, but it may be an option if you have access to some funds. november isn't that far away though - it will be here before you know it once school starts.

Just for info, we looked into a private OT for DS1 (dx of DCD and mild AS) because the dx was taking so long and we were quoted about £250 for an assessment. That was about 5 years ago.

On balance though, I agree that you should see a paed to have an assessment as there are overlaps between dyspraxia/DCD and other conditions and the paed would be able to refer to all the relevant professionals to get a full dx.

Niecie - our private assessment was £430 back in March so there has been a bit of a price hike!

We waited 10 months for a specialist assessment - sensory integration - and DS is already in the 'system'. I think it will be worth the wait, as SENco seems quite keen to put in practise the sensory diet that the NHS provides.
There is nothing to stop you using strategies now that may help. The out of Sync Child, and the Out of Sync Child Has Fun by Carol Stock Kranowitz, has lots of games and ideas that regardless of dx would be fun for any child.

Thanks very much for your replies. Yes, she does see a paediatrician and he agreed with the physio to refer her to this 'joint coordination clinic' which is run jointly by an occupational therapist and a physio. I guess I sit tight and wait although I have been told by the SENCO at school that they may not see her until she has completed a certain amount of the BEAM programme, so not sure where we will stand with this as school haven't done any with her yet although apparently this may happen in Year 1 which she goes into in September.

I did look into a private assessment but was quoted £430 for an initial assessment and although perhaps we could borrow from my parents for this, we wouldn't be able to sustain this amount of money if she needed any treatment. I also was told on here a while back that it is difficult to get back into the NHS system once you've gone down that route.

Thanks for your help everyone.

13lucky - it is probably around £65 per session for therapy which we have managed to get a grant for. However I would echo what Auntevil has said. Our school don't want to do the sensory diet as it was not an NHS OT that prescribed it. If the NHS prescribes one, then I am sure that they will be much more keen to agree to do it with him.