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Originally Posted by Taf
The Parents Association are hopeless, the local Autistic charities are worse. More interested in raising money to keep their paid admin staff in work. Ditto Citizens Advocacy and CAB. You just get referred to their website for "up to date info".
Our GP tried to get some sort of help, but the standard reply was "unfulfilled need"... even from bodies with large funding and staff levels, including the NHS.
Even my daughter's Psych appointments are now 18 months apart on paper, but have drifted to 2 years due to "illness or courses". Her meds and blood tests MUST be reviewed annually according to the local NHS, but they never are, despite nudges from our MP and Welsh Assembly.
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Try other national charities and organisations. They might not be able to come and see you but I don't see any reason they couldn't offer advice on how to proceed. It seems to me that you have to come up with some expert opinion to support your case and unless you do that the answer will be the same. Forums might be useful source of feedback. Find out how other people are dealing with similar issues because you won't be alone in this.