CAMHS Report Due in December 2016

The request was partially successful.

Dear NHS Brighton and Hove Clinical Commissioning Group,

your CAMHS commissioner confirmed that a report on CAMHS performance was due in December 2016. The report was to include the following survey information from local autism parents feedback on CAMHS provision for their children:

"REPORT ON CAMHS AND AUTISM BRIGHTON & HOVE"

http://media.wix.com/ugd/58c8f1_0318f3e1...

This was confirmed at a meeting in October 2016 and also in writing.

I have not been able to find the finished CCG CAMHS report online, please could you direct me to a URL to access it.

Yours faithfully,

A.E.

FOI (NHS BRIGHTON AND HOVE CCG), NHS Brighton and Hove Clinical Commissioning Group

1 Attachment

Please find the CCG’s acknowledgement of your recent FOI attached to this
email.

 

Many thanks

FOI Team
Brighton and Hove Clinical Commissioning Group
01273 238700 | [1][NHS Brighton and Hove CCG request email]

Hove Town Hall, Norton Road, Hove, BN3 4AH

[2]www.brightonandhoveccg.nhs.uk

Freedom of Information Act - please re-direct your request to
[3][NHS Brighton and Hove CCG request email]

The information contained in this e-mail is solely for the intended
recipients or their delegated colleague. It may be subject to public
disclosure under the NHS Code of Openness or the Freedom of Information
Act (2000) unless it is legally exempt from disclosure. If you received
this e-mail in error, please notify the sender and remove all copies of
the message, including any attachments. Any views or opinions expressed in
this e-mail (unless otherwise stated) may not represent those of Brighton
and Hove Clinical Commissioning Group.

Dear FOI (NHS BRIGHTON AND HOVE CCG),

your response is overdue, this information should have been received by now in law. I look forward to your earliest attention to this matter.

Yours sincerely,

A.E.

FOI (NHS BRIGHTON AND HOVE CCG), NHS Brighton and Hove Clinical Commissioning Group

2 Attachments

Please find the response sent on 23 August 2017.

 

Many thanks

FOI Manager
Brighton and Hove Clinical Commissioning Group
01273 238700 | [1][NHS Brighton and Hove CCG request email]

Hove Town Hall, Norton Road, Hove, BN3 4AH

[2]www.brightonandhoveccg.nhs.uk

Freedom of Information Act - please re-direct your request to
[3][NHS Brighton and Hove CCG request email]

The information contained in this e-mail is solely for the intended
recipients or their delegated colleague. It may be subject to public
disclosure under the NHS Code of Openness or the Freedom of Information
Act (2000) unless it is legally exempt from disclosure. If you received
this e-mail in error, please notify the sender and remove all copies of
the message, including any attachments. Any views or opinions expressed in
this e-mail (unless otherwise stated) may not represent those of Brighton
and Hove Clinical Commissioning Group.

Dear FOI (NHS BRIGHTON AND HOVE CCG),

thank you for the reply and the scoping document, I appreciate you sharing this. However, having read through it, it's very clear that the parent feedback survey report (http://media.wix.com/ugd/58c8f1_0318f3e1...) was not incorporated as I was informed by the commissioner it would be. This report was provided both to Mekayla Zahra who produced the scoping report and the commissioner.

Key points in the report were that:

0 respondents stated that CAMHS therapy for their autistic child had been successful;
only 20% of respondents felt that CAMHS staff had autism expertise;
the majority of respondents experienced a parent-blame culture from CAMHS staff;
CAMHS had a poor complaints handling attitude and a history of not seeking feedback;
multiple comments on the negative experience families had with CAMHS.

I am wondering why nothing from the report was mentioned in the scoping document and the key issues above were not covered by other feedback in the process, so it was important that the information was included.

Yours sincerely,

A.E.

FOI (NHS BRIGHTON AND HOVE CCG), NHS Brighton and Hove Clinical Commissioning Group

Dear A.E.

 

Thank you for your email that the CCG received on 22 September 2017
regarding FOI response 1433.

 

You have subsequently raised some points and I have summarised them and
would like to respond to them in order:

 

“The parent feedback survey report was not incorporated.”

The report that was sent was indeed a summary report. The full report was
over 130 pages long and the CCG believed that a summary report
incorporating the general views express would be more accessible,
additionally the full report included many references to individual’s
comments that could allow people to potentially identify or self-identify
themselves. This could potentially breach conditions in the Data
Protection Act’s First Principle states that information can only be
processed fairly and lawfully and […] shall not be processed unless […]
(b) in the case of sensitive personal data at least one of the conditions
in Schedule 3 is also met.” Sensitive information can include “physical or
mental health or condition.” When considering the data that was collected
it was believed that the comments made could easily identify individuals
based on the comments made. When collecting the comments the data subjects
did not give their explicit consent for this information to be made
available to the public in a way that could allow identification of the
individuals.

 

“Why was nothing from the report mentioned in the scoping document and the
key issues were not covered by other feedback in the process, so it was
important that the information was included.”

The CCG used the feedback and incorporated this in to the summary document
– as mentioned above – to make this more accessible to the wider public
and allow the CCG to use the keys issues to review the way the service was
provided for.

 

Further contact

I would like to re-iterate the CCG’s request that you engage with us and
offer, again, the possibility of a meeting between yourself and the
Commissioner to discuss your concerns – particularly as these are now
going beyond the scope of a Freedom of Information request. Please do
consider this option as we feel it will be more beneficial to you, the CCG
in learning from your experiences and potentially for further developing
the service to address the concerns of parents in Brighton and Hove.

 

Please contact the CCG directly and we will be able to arrange this.

 

Many thanks

FOI Manager
Brighton and Hove Clinical Commissioning Group
01273 238700 | [1][NHS Brighton and Hove CCG request email]

Hove Town Hall, Norton Road, Hove, BN3 4AH

[2]www.brightonandhoveccg.nhs.uk

Freedom of Information Act - please re-direct your request to
[3][NHS Brighton and Hove CCG request email]

The information contained in this e-mail is solely for the intended
recipients or their delegated colleague. It may be subject to public
disclosure under the NHS Code of Openness or the Freedom of Information
Act (2000) unless it is legally exempt from disclosure. If you received
this e-mail in error, please notify the sender and remove all copies of
the message, including any attachments. Any views or opinions expressed in
this e-mail (unless otherwise stated) may not represent those of Brighton
and Hove Clinical Commissioning Group.

 

Dear FOI (NHS BRIGHTON AND HOVE CCG),

OK, the survey was conducted entirely anonymously. With a population of 273,400 in Brighton & Hove, the section of that which is children under 16 is 16%, which is 43,744. CAMHS sees children between 11-18yo. So whilst there are not easily available figures on how many of the 43,744 children are specifically within CAMHS age range, as that figure of 43,744 doesn't include 17 & 18yo's who would be relevant for this purpose, this may roughly balance out those children under CAMHS age being included in the figure. The 'official' statistics of ASD are 1% or 1 in 100, this figure is actually very low and therefore not truly representative, because Baron-Cohen has done research showing the figure is 1 in 64, BUT:

"Overall, for boys and girls together, for every three known cases, there are at least two undiagnosed cases of autism-spectrum conditions in the primary school population, or a ratio of 3:2 (known:unknown). There is no evidence of a difference in the undetected estimate of cases for boys and girls, despite a clear difference in the overall ratio of boys:girls with autism-spectrum conditions."

http://bjp.rcpsych.org/content/194/6/500...

Therefore it is a very conservative estimate @ 1% of 43,744 being 437 autistic children (but in reality possibly over 1,000 whether they be diagnosed/undiagnosed/misdiagnosed all of which apply to survey respondents) in Brighton. Therefore it is highly unlikely that anonymous city-wide comments on a survey could identify people in the way you describe. Thus I think your reply is over-cautious because in reality, who would be able to identify people from that figure, where no names, ages or districts are used, even where gender is stated it just applies to the whole city and the child is in an age range of 11-18yo?

Not only that but the survey included ADHD parents, it wasn't only about ASD, so that makes it even less likely as the local representative numbers would be even higher by including them.

However, the main thing is that the feedback is incorporated - and most importantly acted on for the benefit of families and diagnostic rights.

The survey is ongoing and will be fed back to the CCG periodically when and if, sufficient enough new responses are received in the hope of improvements to expertise in ASD among CAMHS clinicians, improvement of cultural parent-blame attitudes, uniform recognition of all ASD subtypes including PDA and female presentation as well as follow-up ASD care.

Yours sincerely,

A.E.

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