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Here some suggested organisations that offer expert advice on SN.

How would you lobby for change? I dont know where to start?

(6 Posts)
Voidka Wed 19-Oct-11 14:48:07

In our area we are not offered OT for sensory difficulties. Infat alot of ASD children are being turned down because they might have sensory difficulties.

I want to change this because a sensory assessment for lots of children with ASDF would be hugely benificial, but I dont know how to try to change it, or where to start.

Can anyone point me in the right direction??

IndigoBell Wed 19-Oct-11 16:00:09

Well presumably they don't offer it because the NHS OT is overstretched and just can't afford to take on extra work.

If that's true what you really need to lobby for is for more NHS money to be spent on OT.

I can't see at all how you'd make that happen.

I think it would be far easier (although not easy) to try and get a charity to pay for it.......

dolfrog Wed 19-Oct-11 17:30:42

Voidka

You would have to identify the specific sensory issues you want to be assessed, identify the specific type of professional that would be qualified to carry out such an assessment for each type of sensory issue you wish to include in your campaign. You would also need to locate some Randomized Control Trials as valid research support for each therapy you wish to include in your campaign.

Currently international research is still trying to identify and define the various sensory issues which can combine to cause the multiple issues on the ASD spectrum. And many of the individual sensory issues are still only at the very early stages of establishing a real understanding of the specific nature of how the brain processes these various sensory forms of information, and then looking at reasons for possible sensory information processing problems.
There are many promoted therapies, which can provide some help, but there is a great lack of understanding of why and how these therapies work, which is why Randomized Control Trails are so important.

coff33pot Wed 19-Oct-11 19:23:39

dolfrog

When you say Randomized Control Trials. Would something like say....going by the sensory check list that OT send you to complete? There are sections for each sensory issue asking you to tick how mild/severe to think.

So perhaps if say you had 3 children with ASD...... with individual sensory issues for each section. Then implemented say 3 known therapies over time with each child and note the outcome of improvement for each therapy practiced?

Is this the sort of thing you mean? So that at the end of the day you can start a campaign showing proof that Occupational Therapy is needed?

If it is then maybe its sponsorship via a charity that the poster would need first and then of course volunteers.

dolfrog Thu 20-Oct-11 02:23:42

coff33pot

"Randomized Control Trials" is are research structures / procedures used when validating a suggested therapy / cure for a specific condition. They provide the basis of a research program, which is then written up and published in a peer reviewed Research Journal. And then becomes part of the body research regarding that particular therapy, medication, diet, etc, used to guide and advise medical professionals, and therapists etc, regarding best practice etc.

Many of the therapies which many suggest on this forum have not been clinically tested using "Randomized Control Trials" or have not had a positive result from "Randomized Control Trials" which is why they can not be called cures even if they do provide some benefit on an individual basis or anecdotal evidence.

Your suggested three children would be too small a sample, and there would be no control group for comparison. But may be enough to gain interest / campaigning for clinical "Randomized Control Trials" based research

You may have to first demonstrate that there is a Scientifically tested, and accepted by the various medical advisory bodies, form of Occupational Therapy for a specific medical illness / disorder, and that there is a local/national demand.

There may be a need for more research in some specific areas, which may require funding, there may be a need for a new unit to provide the services required.

Setting up a lobby / support group of volunteers, a voluntary organisation charity, would need to the support and advice from the relevant professionals (research professionals, clinical professionals) to gain the required credibility regarding current technology and clinical understanding of the issues at the centre of the campaign.

You would have to first demonstrate that there is a Scientifically tested form of Occupational Therapy for a specific medical illness / disorder, and that there is a local/national demand.

Most existing charities have specific constitutions which define the conditions etc they are allowed to contribute to, or support. So you may have to start your own charity with its own constitution, which will have to find its own funding sources.

Regarding ASD there are many sensory issues, and each issue may already have an existing research program overseen by the Medical Research Council, at one or more of its many university research centres around the UK. So for instance Auditory sensory issues would be focused at the Institute of Hearing Research which has its main base at Nottingham University.

The other thing you need is a large number of volunteers to devote a great deal of their own free time and energy to run the campaign, which may have to run for years, and sometimes take on the most unlikely of opponents.

coff33pot Thu 20-Oct-11 20:13:56

dolfrog Sorry for the late reply but thank you for explaining this.

Since posting I have been offered to be involved in a clinical trial by an associate of mine which, as you say they are merely gathering clients (volunteers) at the moment and further clinical investigations will not start till next year at least. This purely started off as queries about my sons issues as I didnt realise to the extent of how active my associate was in such things. I do not know any more about it as this offer has just come about, but if it helps children as a whole then I think it is a good thing smile

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