Here some suggested organisations that offer expert advice on SN.
CAMHS nonsense(9 Posts)
We have been left high and dry waiting for an appointment for the social communications disorder group.
There appears to be no formal assessment process funded for ASD in my part of the country. Thus, CAMHS have been very reluctant to help with anything at all suggesting we are lucky that they have managed to cobble together an ad hoc, informal multi-disciplinary process which is presently unfunded.
Our community paediatrician wrote to them in July asking for assistance with school issues e.g. DS has problems managing anxiety and sensory issues. We had an appointment in which someone took a detailed history but then ran out of time.
No help has been offered.
I have chased it and they have now decided they can offer help in relation to issues at home but not school as school will have to deal with school issues.
Bearing in mind, school have had no contact from CAMHS and most people are not even aware they have a social communications disorder group, it seems a bit tough to acknowledge there are issues but not be prepared even to make suggestions or write to school to offer their advice.
This area is so crap. I have asked my GP to look into an out of area referral as it seems to me that you can't have it both ways, i.e. refuse to fund an ASD assessment process but then expect people to use what doesn't exist
CAMHS is a bit hit and miss depending on where you are.
There are several avenues - the request to your GP for an out of area assessment should be sufficient, but if not you could complain to the PCT / PALS or even bring the fact that there is no local provision to the attention of your MP.
NAS may be able to assist you in finding a diagnostician.
It's not just your area that's crap - the provision for ASD appears to be crap everywhere.
Thanks WetAugust, I have raised it with my MP who is investigating at the moment.
Everything seemed ok until we got filtered through to Child and Family services who diagnose. They are truly, incredibly rubbish. They don't answer calls, respond to letters, provide waiting list time estimates, explain the process. Truly crap.
How can you divide a child into a child at home and a child at school? It's a child with the same issues/problems. Parents may have learnt to manage them but it doesn't mean they're not there.
I would have gone truly bonkers without this board over the last ten months as no one, absolutely no one, has offered one jot of advice or assistance.
Debs, that is outrageous!
I don't know what to say apart from i understand how frustrated you must feel.
I would too ask gp for out of area referal. Hopefully you'll be able to get help elsewhere.
They just don't make things easy for us and unfortunately it is our dc who suffer from all this time wasted for nothing.
I myself do worry a fair bit about our ever so slow process towards dx (which we may still never get in the end! ).
Good luck with your new options.
A form,al complaint will make them sit up.
I guarantee it.
Moondog's risht Debs - complain and do it in writing.
I made a formal complaint about ours and from then on son got first class care - right up to age 21!
The trouble is - according to them- there isn't actually a service to complain about. They are not funded to do ASD work so anything they take on is over and above their mandate . So basically, they feel they have an excuse for giving a poor and limited service.
I think it would be better just to have no service and be honest about it.
Interestingly, I was told by the head of the service, in writing, that a neighbouring county actually pay them to undertake assessments so clearly children are being sent here from outside the county and getting a better service because it is paid for.
I was going to see what the hospital trust say to the MP by way of explanation for this before doing anything else.
MP's genereally a waste of time. Fight them with their own weapons, these being the guidelines for a service as expounded in Code of Practice. Ask for a copy, go through with fine toothcomb, then write precise account of how they are breaking it.
Extremely effective strategy if you can be arse (and most peopel can't).
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