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No Diagnosis Service In My County?

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#1 deannatrois


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Posted 22 August 2014 - 02:46 AM

I have one 18 year old diagnosed with ASD (Aspergers and dyspraxia) some years ago.  Now my younger son has been showing signs (and problems at school).  I have had lots of problems getting the school to deal with his special needs.., won't refer him onto the panel for an assessment for statementing. After month's of asking I did get my GP to refer my son on for an assessment/diagnosis (he didn't know where to refer hiim to) finally in January 2014.


Just received a copy of a letter written to my GP saying that he'd been held on a waiting list because there was NO funding for diagnistic services in Kent for 'social communication difficulties or ASD.  The letter went on to say funding had been applied for and the service was in the process of being set up.  But no idea how long it could take, or when my son could be seen.


Is this allowed?  How could the whole of Kent have NO diagnostic service for ASD?  How many kids is this leaving without even the first step up to receiving support?


Is it permissable for it to take Kent Community Health to take 8 months to tell me what the true situation is?  I tried phoning but could never get through to anything but an answering machine with no call back.


It seems daft to have this service run by the Speech and Language Therapy Service when communication difficulties is just a small part of ASD.  


Any comments anyone?  Can I do anything? Will writing to my MP do any good? Is it discriminating to have no diagnosis service (because I imagine it could take a couple of years to set this up, he'll probably be ready to leave school by the time he's seen lol)

Edited by deannatrois, 22 August 2014 - 02:47 AM.

#2 imperfect parent

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Posted 22 August 2014 - 07:07 AM

Put in a request for statutory assessment for you son yourself.  it helps if the school is on board, but it's not necessary.  As far as I know the law  changes in England until Sept so you need to be quick.  If you're not you need to look at the new process,  Info is available on http://www.ipsea.org...ed-to-know.aspx and http://www.sossen.org.uk/


Both helplines are now until Sept.


You need to separate the 2 assessments.  


School should be able to identify needs and progress the child along the graduated response process, but in reality do so much damage as they do not understand the cause of behaviour and so often play down difficulties.   An EP assessment is the first step, but making a request for statutroy assessment puts time limits and ensures things happen more quickly ( though I can't comment on the changes coming in in Sept)You should not need a diagnosis of ASD to get appropriate support, but in reality you do so you need to pursue that separately.


 With ASD assessment contact http://www.autism.org.uk/ for local information.  They may put you in touch with other parents who can tell you about local services, or they may know about diagnostic processes in your area.


I would tell NAS about your letter, I believe you have a right to have your child assessed, but how they can say there is no funding for diagnostic services when if they have no service they can buy it in?  


Our county diagnostic team is so poor neither of my boys were accepted as ASD by them until we obtained a diagnosis elsewhere, and they waste a lot of time and money because they don't know what they are doing.  Having a service doesn't mean it will deliver so I wouldn't worry too much about what may come in the future.


For you I think the best way forward is an EP assessment.  Do you have the means to pay for an EP assessment?  We used an EP from Kent who was excellent, it was money well spent.


Your MP is a good place to highlight issues.

#3 cathcart


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Posted 22 August 2014 - 09:53 AM

This is a commissioning issue with the ethics that it is the child who suffers because no service is offered. Write to your local Patient Administration and Liaison Service and complain about this. It is only with proof that a service is needed will it be commissioned. Your GP should also be raising this issue.


But also agree would be requesting an assessment of SEN with the LA.

#4 Ymum


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Posted 23 August 2014 - 08:47 PM

Also in Kent and facing the same issue. My daughter 7 has seen the pediatrician who said there's def something but to get a diagnosis means paying at least £200 for a speech and language assessment.  


I also have a son who is diagnosed in Kent but he only got through because he is non verbal and therefore qualified for speech and language intervention therefore had a speech and language report so could go to clinic.


I have no answers really but I know a few parents near me who are in the same boat and either they are applying to charities for funding or are waiting for the diagnostic pathway to change.

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