Autism Spectrum Disorder and GP Coding

Waiting for an internal review by Department of Health and Social Care of their handling of this request.

Dear Department of Health,

in the Think Autism strategy update document (https://www.gov.uk/government/uploads/sy...) the DoH states:

"8.6 DH will work with NHS England and with the Royal College of General Practitioners (RCGP) through their autism clinical priority programme which runs from April 2014 to 2017 to look at the feasibility of introducing a Read Code for Autism."

Can you confirm if this feasibility study has been completed, what the outcome was and what the Read Code for autism spectrum disorder is that GPs should use, if one has been formulated. If there are any documents detailing discussion of this matter please link me to them.

Yours faithfully,

A.E.

Do Not Reply,

1 Attachment

Dear A.E,

Please find attached the Department of Health's response to your recent
FOI request (our ref: FOI-1098994 ) 

Yours sincerely,

 Edward Franklyn 

Freedom of Information team
Department of Health

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Dear Department of Health,

thank you for your response in which you state:

"Please note, under section 8(1) of FOIA, a request for information must comply with three requirements. It must:

(a) be in writing,
(b) state the name of the applicant and an address for correspondence, and
(c) describes the information requested.

After initial consideration, this request appears to comply with requirements (a) and (c) but it does not comply with requirement (b) because you have not provided your full name. As your request is not valid under FOIA, I am not obliged to process your request. I would like to take this opportunity to recommend that any future FOI submissions adhere to Section 8 of the FOIA.

To enable us to meet your request, please resubmit your application including your real name. This should normally include your first name or a title (e.g. Miss or Dr) as well as your surname. "

However: https://www.whatdotheyknow.com/help/priv...

"Technically, you must use your real name for your request to be a valid Freedom of Information request in law. See this guidance from the Information Commissioner (October 2007). However, the same guidance also says it is good practice for the public authority to still consider a request made using an obvious pseudonym. You should refer to this if a public authority refuses a request because you used a pseudonym."

This account has been used to request FOIs from a variety of bodies and they have responded without issue, so I am unclear why you have responded this way. The DoH themselves has previously replied to this account, which makes your response even stranger (https://www.whatdotheyknow.com/request/t...)

I am sure you do not wish to appear to be inflexible or deny a valid FOI request and I therefore await your earliest response, as required in law.

Yours faithfully,

A.E.

Dear Department of Health,

I would appreciate your response to https://www.whatdotheyknow.com/request/a... bearing in mind my reply of 16th October.

Yours faithfully,

A.E.

FreedomofInformation,

Dear Sir/Madam,

Thank you for your further email dated 21 October 2017.

As stated in our response of the same date, under section 8(1) of the FOI Act, a request for information must state the name of the applicant. Because you have not provided your full name, your request is
not valid under the FOI Act. To enable us to meet your request, please resubmit your application including your real name. This should normally include your first name or a title (e.g. Miss or Dr) as well as your surname.

We will consider your resubmitted request upon receipt as long as it meets the requirements stated above. You will then receive a response from us within the statutory timescale of 20 working days.

You will note that previous responses to you have been handled as general correspondence, not under the FOI Act, as set out in our response at the following link:

www.whatdotheyknow.com/request/the_autis...

Yours faithfully,

Charlene Carter
Freedom of Information Team
Department of Health

Dear FreedomofInformation,

thank you for your reply, however I am unclear as to the reason for your refusal to respond to the FOIA, bearing in mind that failing to do so (as before stated and requoted below) this means the DoH is failing to adhere to good practice as stated in the same Act which you cite:

"Technically, you must use your real name for your request to be a valid Freedom of Information request in law. See this guidance from the Information Commissioner (October 2007). However, the same guidance also says it is good practice for the public authority to still consider a request made using an obvious pseudonym. You should refer to this if a public authority refuses a request because you used a pseudonym."

This account has been used to request FOIs from a variety of bodies and they have responded without issue, so I am unclear why you have responded this way. The DoH themselves has previously replied to this account, which makes your response even stranger (https://www.whatdotheyknow.com/request/t...)

Perhaps you could also explain why you have refused to respond also, when you have previously responded to this account before?

Yours sincerely,

A.E.

Dear FreedomofInformation,

Please could you conduct an internal review on this FOI which has not been satisfactorily responded to.

Yours sincerely,

A.E.

FreedomofInformation,

1 Attachment

Dear Sir or Madam,

I would like to apologise for the length of time it has taken to respond to your request for an internal review.

The review is now complete and I attach a copy of my response.

Kind regards,
James

James Shewbridge
Freedom of Information Team
Department of Health and Social Care
39 Victoria St
London SW1H 0EU

show quoted sections

Dear FreedomofInformation,

thank you for your reply "I have taken the opportunity to reconsider your request and its previous handling. I have decided to uphold DHSC’s position in not processing your request under Section 8(1)(b) of the FOIA. Section 8(1)(b) requires that a request for information must include the real name of the requester. As you cannot be identified from the name provided because you have only used initials, your request does not meet the requirements of section 8(1)(b) and is technically invalid. " to my FOI request entitled 'Autism Spectrum Disorder and GP Coding'.

However I would like you to review your response as:

1) you have previously replied to TWO other FOI requests to me on this same account:

"Questions regarding: A manual for good social work practice Supporting adults who have autism" https://www.whatdotheyknow.com/request/q... and
"The Autism Innovation Grant"
https://www.whatdotheyknow.com/request/t...

Therefore your reasoning is invalid AND it is also incorrect because of the following (which you seem to have overlooked):

"Technically, you must use your real name for your request to be a valid Freedom of Information request in law. See this guidance from the Information Commissioner (October 2007). However, the same guidance also says it is good practice for the public authority to still consider a request made using an obvious pseudonym. You should refer to this if a public authority refuses a request because you used a pseudonym."
https://www.whatdotheyknow.com/help/priv...

"6. In most cases, public authorities should consider freedom of information requests and requests for environmental information without reference to the identity or motives of the requester."
https://ico.org.uk/media/for-organisatio...

Therefore I would appreciate your earliest response.

Yours sincerely,

A.E.

FreedomofInformation,

Dear Sir or Madam,

Thank you for your further email about my response to your request for an internal review (our ref: IR 1098994).

As explained in my response, if you are not content with the outcome of this review, you may apply directly to the ICO for a decision. The ICO can be contacted at:

The Information Commissioner's Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF

https://ico.org.uk/concerns

Kind regards,
James

James Shewbridge
Freedom of Information Team
Department of Health and Social Care
39 Victoria St
London SW1H 0EU

show quoted sections

Dear FreedomofInformation,

Mr Shewbridge, from your response (https://www.whatdotheyknow.com/request/a...), the public will wonder what on earth it is the DoH has to hide. It should not be deemed sensitive information by any stretch. Therefore you leave every reasonable person to conclude, that the DoH does not want to provide this information due to the use of illogical and unreasonable excuses to avoid providing it. The assumption therefore is, that the DoH has failed in some way, to ensure within a whole 3 year period, that GPs are coding the patient records of autistic patients, otherwise you would have no problem releasing this information which is of strong public interest. This may even mean that a feasibility study was not even undertaken in the first place. One could naturally conclude from this, that the DoH does not want the true figures of autistic adults in the UK to be made public through easily collatable statistics, because this would then illustrate the shocking rise in ASD among children and also identify that the Government should be providing more resources to meet need. I shall indeed consider contacting the ICO as you suggest.

Yours sincerely,

A.E.

A.E. left an annotation ()

To anyone following this request, please find following information relating to it:

"Should People Register as Autistic?" (2015)
https://www.huffingtonpost.co.uk/robyn-s...

"As part of my work on the Department of Health's National Autism Programme Board (APB), I am fortunate to work with Dr Carole Buckley, who is the Royal College of General Practitioner's (RCGP's) autism champion."

"Carole has been working tirelessly with the RCGP to make sure GPs are better equipped to support autistic people and their families. I was very impressed by the amount of work she and her colleagues had achieved. You can read the minutes of the October 2015 meeting of the APB by clicking here (https://m.box.com/shared_item/https%3A%2...

"Carole told me that it might be possible to arrange a register of autistic people, which could mean they would benefit from annual health checks, as many have co-occurring conditions."

"A Spectrum of Obstacles An Inquiry into Access to Healthcare for Autistic People" (2016)
https://westminsterautismcommission.file...

"An anonymous national primary care register for autism should be created, based on a single diagnostic-code in GP records"

"It is clear that a range of professionals believe that we need to start recording autistic
people’s use of health services and that the first step in doing so would be to have a consistent diagnostic-code for autism and an anonymous National Primary Care Register for autism."

"It is clear that there is an incredibly strong mandate for the introduction of a diagnostic codefor autism and an anonymous National Primary Care Register for autism included in the Quality and Outcomes Framework (QOF) for GPs."

"The Commission calls for consistent diagnostic-coding to be used in GP practices so that there is consistency in flagging autistic patients. This code should be used to form an anonymous National Primary Care Register to be used to improve services, overcoming the current lack of data available. This should be introduced as part of the QOF which incentivises GPs to utilise a code and maintain a register."

"GPs’ confidence in caring for their patients on the autism spectrum: an online self-report study" (2017)
http://bjgp.org/content/early/2017/05/08...

"Conclusion There is an urgent need for improved local specialist service provision alongside clearer referral pathways for diagnosis to improve both GPs’ confidence in caring for their autistic patients and the healthcare experiences of autistic patients and their families. Local clinical commissioning groups are best served to assist GPs in ensuring that they can reliably detect the condition and make appropriate provisions for support."

So with the same thing having been said over and over for the last 2-3 years and nothing having been done despite this, I think we can safely say that without ANY good excuse, the study was not done, the codes have not been introduced and ASD statistics are not being recorded.

The true statistics of ASD are being hidden. That's at least part of the reason why.

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