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OT. Help please

(16 Posts)
giraffesandelephants Wed 03-Jul-13 19:37:59

Hi there

My DS has aspergers and is 5.5 years old. We finally got to see the OT today after a long 10 month wait to see them. I had previously filled in a form for the OT when the referral was made to them. In this form I highlighted his sensitivity issues (sound, touch, aste, noise) which he is hypersensitive to. I mentioned that he was meeting all the physical milestones with his peers and that wasn't my concern.

It was a 90 minute appt where try did jumping on a trampoline, catching and throwing balls, threading beads, cutting, writing, puzzles, all the usual "gross and fine motor skills" tests, which I told them wasn't te problem! They then said he is fine and theY are discharging him as the NHS doesn't cover the hypersensitivity issues as it isn't proven to work! I was fla berg asters to say the least. I left there feeling they had wasted my sons and my time.

So basically I have been phoning private OTs in the area, and we just simply cannot afford to have him treated privately!

My question is really, have any of your children been helped by OTs on the NHS with sensory processing disorder and why did they Fob me off? What do I need to do to get him seen and for them to take this all seriously?

Sorry for the ramble..just confused and feeling let down by the system. We are in Kingston Upon Thames in Surrey btw.

Thanks so so much for reading. Really look forward to hearing from anyone.

claw2 Wed 03-Jul-13 20:00:43

We got fobbed off as they are understaffed and overworked and referral was declined as 'they only have the staff to deal with the most severe cases ie children who can barely walk etc and no sensory trained OT'

Most boroughs do not have sensory trained OT to deal with sensory issues. However a lovely paed told me that once a need has been identified, NHS must provide the service. If your borough does not have a sensory trained OT or the resources to meet that need, they should refer and fund to the nearest borough who does.

The NHS OT who we saw fobbed of us off and discharged. She did similar assessments to what you describe, so she could report no problems and discharge!

Private OT did a proper assessment things such as assessment of drawing and handwriting skills, visual perceptual skills, sensory processing skills, fine and gross motor skills, postural tone and joint stability, spatial awareness, motor planning, self care and independence skills.

She recommended input from an experienced sensory integration OT, direct OT sessions, programme for school, sensory management and sensory processing programme etc, etc to address his difficulties.

So if you have a report from NHS OT which identifies difficulties, they have to provide the service, if not in your borough, they have to fund a borough who do have the resources ie sensory trained OT.

Hope that helps.

It's the same in my county, my DS was referred to OT before being diagnosed with Asperger's, I suspect if the diagnosis had been in place he wouldn't have got the referral. In his case the issues were mainly coordination, retained reflexes etc rather than sensory, but we were told that NHS OTs here are not trained in sensory processing disorder. He had two years worth of OT before being discharged. Sorry, this is not much help, but wanted to let you know that it's not just your area. I hope someone else will come along with some useful advice.

giraffesandelephants Wed 03-Jul-13 20:21:18

Thanks guys. I guess I just need to wait for the OT report now. Aaaargh, the stress of parenting a child with additional needs is so time consuming and frustrating!

frizzcat Wed 03-Jul-13 21:01:54

Is your ds statemented?
I had the same thing and was discharged. I used the statement and showed evidence (provided by school) that his sensitivity to noise affected his ability to concentrate and participate in the national curriculum and therefore he was notfully accessing the curriculum.
The LA amended the statement so that sensory OT would be provided. OT also wrote a sensory report in support of the statement ammendment - long way round but ds got some ongoing OT support.
I'd imagine you could certainly show his noise and touch sensitivity would prevent him from accessing the national curriculum - taste is another matter, but as claw says if they acknowledge the issues then you could get a referral out of your PCT.

Re: evidence of sensory therapy, I would disagree with the OT that there is no evidence that sensory therapies work. It just that there isn't enough quantifiable evidence - largely because whilst a change in behaviour can be seen in some cases, they can't measure the actual changes in the brain. They can't see the problem that causes the sensitivity and so it's difficult to measure changes once the behaviour/reaction improves. Am I making sense? blush
However, there is more evidence coming through now, and I've since a shift slightly in my area whereby practitioners are moving to challenge commissioners as they are seeing and recognising the importance of sensory OT for some children on the spectrum.

giraffesandelephants Wed 03-Jul-13 21:10:11

Hi Frizz. No at the moment he isn't statemented. I going to speak with the senco tomorrow and see if there is anything she can do. Just feeling incredibly frustrated at the moment. But thanks for your reply and support.

PolterGoose Wed 03-Jul-13 21:56:40

Just to say that our NHS OT team are shit hot on sensory stuff, ds's sensory needs were identified at his first session, since then we've had a number of 1-1 sessions, I've attended a parents programme on sensory integration and ds completed the 6 week Alert Programme to help children learn how to manage their own sensory problems. So it isn't true that NHS don't do sensory confused

It is perhaps worth reminding the OT team that the new DSM criteria for ASD places far more importance on sensory problems as part of the criteria for diagnosis.

frizzcat Wed 03-Jul-13 23:04:42

Oooh - that's interesting to know that will help when I go for my next OT therapy. What does the Alert program entail and how did you find it?

Also <<whispers>> what/who is DSM?

giraffesandelephants Thu 04-Jul-13 07:03:11

Thanks all. Well it looks as if we were fobbed off. Can anyone advise me the best course of action to take this up with them and to fight my sons corner to be seen? I really am confused and don't know what to do.

PolterGoose Thu 04-Jul-13 08:14:25

The American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM) is one of the two main guides for classification of a whole range of conditions. The other one is published by the World Health Organisation and is the International Classification of Diseases. It is the latest DSM (5) that has added sensory to the diagnostic criteria for ASDs.

Alert Programme

The Asperger Kids Toolkit is a hands on workbook which incorporates some sensory work very similar to the Alert programme.

claw2 Thu 04-Jul-13 12:53:59

Giraffe, was the OT you saw sensory trained?

giraffesandelephants Thu 04-Jul-13 16:00:37

I don't know...I am sure if she was she would have been more helpful!

claw2 Thu 04-Jul-13 16:19:12

You could always phone and ask.

If she wasn't you can ask your Paed or GP for a referral to a sensory trained OT, bearing in mind you can go out of borough if your borough doesn't have one.

If she was hurry her report along to see whether it identifies any sensory needs. IF it does, then a need has been identified and the PCT must meet it, if not in your borough, then fund another borough.

You can complain to the PCT about the service you have received and remind them of their duty of care, however I would try the other routes first, as complaining about OT could influence what she writes in her report.

giraffesandelephants Thu 04-Jul-13 20:16:48

Thanks everyone for everything. I got hold of the gp today. He is going to do some research and refer to a sensory OT which is great. Once we have an appt I am going to complain re the appointment and their lack of empathy. Will keep you updated.

claw2 Thu 04-Jul-13 21:20:36

That's great news Giraffe!

Word of caution though, personally I would only complain if there was an end result for you ie complaining resulted in you getting a service. There is a long road ahead, pick your battles.

Yes, these things can come back to bite you on the bum (although from my experience the chances of any two people in different departments of the NHS actually speaking to each other are slim). Glad your GP was sympathetic.

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