ds1 has to wait a year for OT!

[Chopster]

I'm getting so fed up with waiting for help. It has been two years since he was first referred to a paed. It took a year to get a physio assessment then they decided that OT was more suitable to deal with his hypermobility and he has to wait a year now before that will start. Aaargh! I also had a letter saying that his next paed#2 appointment has been put back to october, so we won't be able to discuss his EEG results until then, while paed#1 is also due in october anyway. I am so fed up, is there anywhere else I could go to get him some help? He dislocated a finger last weekend, and it is likely to keep happening - he NEEDS the therapy.

Hopeless isn't it. You can do the normal stuff of complaining to MP's councillors etc, but I found it doesn't make any difference at all tbh. The only way you can guarantee OT is to get it written into parts 2 and 3 of a statement of special educational needs, but that's a massive battle in itself.

Any chance of paying? TBH its the only way I've ever managed to access services for my son (until he went to special school where things improved). You might only have to pay for 1 appointment to get some exercises to do at home.

We did get OT after a 2 year wait, but it wasn't that useful really, 6 monthly appointments.....

We waited 18 months ....4x1 hour sessions.

We're still waiting. Back in February, the wait list was apparently 5 months long.

do you mind me asking how much we would be looking at if we did pay? I would consider it.

The other issue is that the paed wants a report from the OT to help decide if ds has dyspraxia. So this means more delay in gettign him a full dx. The paed is certain that he has additional problems as well as hypermobility.

Trouble is there are n't that many private paediatric OT's around either. Try here as a starting point.

My Ds2 sees a private OT because we were getting so little out of the NHS (and what we got was a good deal more than many of you). She charges £40 a session which usually lasts 45-60min. Whereabouts in the country are you?

saker that sounds really reasonable. I'm in berks, would be prepared to travel a bit though.

lizs, thanks for that site, have emailed a service local to me.

Has your ds had an OT assessment or is it a year just for an initial assessment, can the PAED try & jump you up the list at all, he may be willing if he is waiting on reports as well.
We waited ages for ds2's initial assessments but once on their books iykwim the service & support from OT has been brilliant.
Also does your hospital have an acute OT/Physio paed team, our ds is looked after by community OT & physio but if a child is in pain or needs more intensive input than they can provide the acute team can help, ask the paed, you never know there may be another way to access the NHS system.
I hope your able to get him some support soon.

I will try the paed again. need to get hold of the physio;'s assessment report anyway. I got a reply fromt he people I emailed and I'm looking at about £50 plus £140 for 6 sessions, as logn as they don't want to do their own assessment.

Does anyone know if there is much difference between a physio and an OT assessment? Would a physio be able to help him at all? Since he is already in their system, I cna get through to them quicker.

ds1 has had a physio assessment, but not actually seen the OT yet. They did questionaires to me and the school, and then wrote back saying that they had assessed the information, and he is waiting for therapy. I don't think they are planning another assessment.

IME Physio assessment is always physical exam, measuring range of movement etc & also watching how ds 2 gets about & moves from 1 postion to another, ds2 has mild CP & hypermobility & generalised low muscle tone, physio has helped with all. Strengthening exercises can be given & if he has trouble with ankles etc piedro boots or splints can help.
OT has been much more about how he copes with fine motor tasks, self help skills, feeding, holding pencil etc as well as working on social skills & confidence.
There is some overlap & i guess they both could offer some advice but really are very different.
I think there are a couple of paed physios on mn, hopefully they will offer some advice!

hmm, I didn't know about the social side of that, ds1 could really do with that. Thanks for explaining. I'm going to call the paed later and see what they have to say.