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Guidance for Adults for Assessment & Diagnosis through the NHS

IntenseWorld

Here is information on what to do to get assessed:

http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-information-for-adults/how-do-i-get-a-diagnosis.aspx (NAS also have a helpline)

Here is a shortened version of the AQ50 (a validated test by Simon Baron-Cohen et al used in ASC assessments) which GP's should use as a screening tool prior to referral:

Link to AQ10 (autism quotient screening questionnaire): http://docs.autismresearchcentre.com/tests/AQ10.pdf (complete and take to GP).

Please note, your GP cannot fob you off with comments such as "there is no support for adults" or "we have no facility to assess locally" etc. You are entitled to an out-of-area assessment if there is no local clinic.

Your right to a second opinion on the NHS.

NHS choices regarding treatment, hospital, clinician etc.  Here is NHS Choose & Book.

NHS statement on referrals entitlement here and here.

Check (and leave) reviews of your clinic or hospital before you choose.  You may also read and leave reviews here by selecting your place of treatment from the menu.

Here is a quote from the Department of Health:

"Patients currently have the right to choose the organisation that provides their treatment when they are referred for their first outpatient appointment with a service led by consultants, and to information to support that choice. Any choice beyond this is at the discretion of the individual primary care trust (PCT). 

You may be aware that the Government has made a number of commitments relating to extending the choice of treatment and provider in the vast majority of NHS-funded services. Views on implementing these commitments were collected in the subsequent public consultation Greater choice and control. The formal responses to the consultation are being published on the Department of Health website at www.dh.gov.uk and can be found by typing ‘Greater choice and control’ in the search bar. 

The NHS Standard Contract states that providers must accept referrals for any patient who chooses that provider and whom it is within their clinical competence to treat. 

I would suggest that patients contact the Patient Advice and Liaison Service (PALS) at their local PCT, which can be found through the NHS Choices website at www.nhs.uk. PALS will be able to contact and investigate this issue with the chosen provider."

NHS statement on referrals entitlement: http://www.nhs.uk/chq/Pages/1094.aspx?CategoryID=68&SubCategoryID=153

and

http://www.nhs.uk/NHSEngland/AboutNHSservices/doctors/Pages/gp-referrals.aspx 

NHS NICE guidelines here: http://www.nice.org.uk/CG142 

Autism Strategy here: 

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/151844/dh_122910.pdf.pdf 

If you need to complain to the NHS about their failures, here: 

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx 

Anyone facing trouble getting their GP to listen, contact your local councillor here: 

http://www.writetothem.com/ 

If you do not get sufficient help from them, go to your MP here: 

http://www.theyworkforyou.com/ 

There is also the Lords but they have no duty to reply to members of the public: 

http://www.writetothem.com/lords

(Mods: please could this be made into a sticky?)

Parents

  • Are you saying that your "card was marked" before you even saw the consultant, because you pushed your GP for an assessment?

    I would believe this, because I have personal experience of something similar myself.

    This is some of the information from Dr Gould I mentioned: http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/gender-and-autism/women-and-girls-on-the-autism-spectrum.aspx and there are some interesting PDF's on the website worth reading too.

    The fact that he thought you taking pills to alleviate stress was OK is beside the point as to whether you have Asperger's or not from his perspective.  He is missing the fact that you have some form of social anxiety.  Yes, that can exist as a diagnosis alone, but his job as a clinician is to investigate that further.

    Did they take your childhood history?  Because if not, he has not followed guidelines.  Even if your parents couldn't be there, you can bring someone who knew you as a child (or an interview could be done by questionnaire or by telephone) and when it is simply impossible for whatever reason, diagnoses can still be given without childhood history.  It is highly preferable but not essential.  These are the NHS NICE Guidelines, they are backed up by statutory guidance (which is the law as it is a result of the Autism Act and the Autism Strategy) so they have to assess correctly:

    http://www.nice.org.uk/nicemedia/live/13774/59741/59741.pdf

    http://guidance.nice.org.uk/CG/Wave23/1/Consultation/Latest

    Did the consultant use any clinical tools such as the Autism Quotient (AQ) or the Adult Asperger's Assessment (AAA) or the Autism Diagnostic Observation Schedule (ADOS)?

    If it was just a "chat" about your difficulties then it was not a proper ASC assessment and you can challenge this.

    You can ask for an independent out of area second opinion, this information might be useful: http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-information-for-adults/how-do-i-get-a-diagnosis.aspx

    You can approach the head of adult services (probably under mental health) in your CCG:

    http://www.nhs.uk/servicedirectories/Pages/CCGListing.aspx

    Tell them you have suffered a sub-standard service from the relevant NHS department and it is in contravention of statutory guidance according to the Autism Act.  Tell them you want their assistance in getting a fair and unbiased assessment.  There was a listing on the NAS website with contact names but I can't find it.

Reply

  • Are you saying that your "card was marked" before you even saw the consultant, because you pushed your GP for an assessment?

    I would believe this, because I have personal experience of something similar myself.

    This is some of the information from Dr Gould I mentioned: http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/gender-and-autism/women-and-girls-on-the-autism-spectrum.aspx and there are some interesting PDF's on the website worth reading too.

    The fact that he thought you taking pills to alleviate stress was OK is beside the point as to whether you have Asperger's or not from his perspective.  He is missing the fact that you have some form of social anxiety.  Yes, that can exist as a diagnosis alone, but his job as a clinician is to investigate that further.

    Did they take your childhood history?  Because if not, he has not followed guidelines.  Even if your parents couldn't be there, you can bring someone who knew you as a child (or an interview could be done by questionnaire or by telephone) and when it is simply impossible for whatever reason, diagnoses can still be given without childhood history.  It is highly preferable but not essential.  These are the NHS NICE Guidelines, they are backed up by statutory guidance (which is the law as it is a result of the Autism Act and the Autism Strategy) so they have to assess correctly:

    http://www.nice.org.uk/nicemedia/live/13774/59741/59741.pdf

    http://guidance.nice.org.uk/CG/Wave23/1/Consultation/Latest

    Did the consultant use any clinical tools such as the Autism Quotient (AQ) or the Adult Asperger's Assessment (AAA) or the Autism Diagnostic Observation Schedule (ADOS)?

    If it was just a "chat" about your difficulties then it was not a proper ASC assessment and you can challenge this.

    You can ask for an independent out of area second opinion, this information might be useful: http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-information-for-adults/how-do-i-get-a-diagnosis.aspx

    You can approach the head of adult services (probably under mental health) in your CCG:

    http://www.nhs.uk/servicedirectories/Pages/CCGListing.aspx

    Tell them you have suffered a sub-standard service from the relevant NHS department and it is in contravention of statutory guidance according to the Autism Act.  Tell them you want their assistance in getting a fair and unbiased assessment.  There was a listing on the NAS website with contact names but I can't find it.

Children
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