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How about an specialist Autistic Regulatory body ?

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How about an Autistic Regulator body ?

The annoying issue for me, is the total disparity in the system,, post code lottery and chance.

In surrey they set up private autism schools, in the inner cities you end up with a mental health problem due to lack of support, then you get support.(paradox). The UK is still such a country of economical and social divide. Running of crisis management because there is no pre-planning or standard guidelines being instrumented across the country.

It would be good to have list of what assistance you should be getting if you have autism, as it seems to me that no one knows, not even the professionals involved in the condition.

How about an Autistic Regulator body as a core solution ? at least this way it will advocate and give or enforce statutory rights for people abused by the system by lack of care, as it currently stands in many areas across the whole country.

I feel the NAS are attempting in way to cover this role,, but maybe in London they are the voice of autism, but on the wider isolated spectrum of the country they are not so, and this is were the gap of services are.

Is the current regulatory body the NHS ?

 

Parents

  • Longman, you must have investigated this a lot - and sad to say that you're pretty spot on for my area.  The Commissioning Lead is lead for adult mental health services (MHS), not autism specifically.  There is an equivalent for the children's services too and it's the same set up.  I find it insulting that they start off by viewing autism as a mental health problem and not a neurgological one, yes OK many of us have co-morbid mental health issues too (most of which could be caused by living with autism in a difficult environment without support or adjustments), but some won't and it's a miscategorisation (something that bothers me as an Aspie). They appear to be paying lip service only to the autism Act by having consultations and saying "oh yes, this needs to be done" etc. but fast forward another three-four years and it still hasn't.  They are fine at identifying the problems but crap at resolving them.

    The local adult diagnostic service manager stated about 6 weeks ago that NHS NICE Guidelines are "only guidelines and we don't have to follow them" despite the fact that they are backed up by statutory guidance.  A senior psychologist in MHS told me a few days ago that MHS "doesn't specialise in working with Asperger's syndrome" and I have communicated this to the adult Commissioning Lead, of which here is a snippet:

    "According to the Autism Strategy 2009 and the Autism Act 2010 and Statutory NHS Guidance (which incorporates NHS NICE Guidelines) the NHS is legally obliged to provide an autism care pathway, so I don't think saying that MHS "doesn’t specialise in working with Asperger’s syndrome" is even allowable.  It may not be a specialism per se, but the duty is there to provide appropriately qualified practitioners (by that I mean trained in ASCs) to provide the therapy/intervention needed by people on the spectrum."

    I'm also still fighting my GP for reasonable adjustments which has been going on months now and he's still finding excuses for getting out of.

    Basically the Act seems to be a dog with no teeth, no-one is policing this.  If they were, the NAS wouldn't need to have it's red button campaign.
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  • Longman, you must have investigated this a lot - and sad to say that you're pretty spot on for my area.  The Commissioning Lead is lead for adult mental health services (MHS), not autism specifically.  There is an equivalent for the children's services too and it's the same set up.  I find it insulting that they start off by viewing autism as a mental health problem and not a neurgological one, yes OK many of us have co-morbid mental health issues too (most of which could be caused by living with autism in a difficult environment without support or adjustments), but some won't and it's a miscategorisation (something that bothers me as an Aspie). They appear to be paying lip service only to the autism Act by having consultations and saying "oh yes, this needs to be done" etc. but fast forward another three-four years and it still hasn't.  They are fine at identifying the problems but crap at resolving them.

    The local adult diagnostic service manager stated about 6 weeks ago that NHS NICE Guidelines are "only guidelines and we don't have to follow them" despite the fact that they are backed up by statutory guidance.  A senior psychologist in MHS told me a few days ago that MHS "doesn't specialise in working with Asperger's syndrome" and I have communicated this to the adult Commissioning Lead, of which here is a snippet:

    "According to the Autism Strategy 2009 and the Autism Act 2010 and Statutory NHS Guidance (which incorporates NHS NICE Guidelines) the NHS is legally obliged to provide an autism care pathway, so I don't think saying that MHS "doesn’t specialise in working with Asperger’s syndrome" is even allowable.  It may not be a specialism per se, but the duty is there to provide appropriately qualified practitioners (by that I mean trained in ASCs) to provide the therapy/intervention needed by people on the spectrum."

    I'm also still fighting my GP for reasonable adjustments which has been going on months now and he's still finding excuses for getting out of.

    Basically the Act seems to be a dog with no teeth, no-one is policing this.  If they were, the NAS wouldn't need to have it's red button campaign.
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