Large discrepancy across Essex NHS areas re diagnostic & support services for autism /Asperger's syndrome

NHS England did not have the information requested.

Dear NHS England,

Please read below: A question to FULL council.

"ESSEX COUNTY COUNCIL MEETING
12 July 2016
Answers to Written Questions (standing order 16.12.1

[.....]

"4. By Councillor Kendall of the Cabinet Member for Adults and Children
‘Autism is a major issue facing many families across Essex and a key concern for many of them is the consistency of diagnostic service for adults. I understand there are three different diagnostic services for different parts of the county because they are commissioned by separate CCGs and provided by different NHS Trusts. There currently seems to be an inconsistency of referral route, waiting lists, and support offered all based on where you live in the county. What steps is the Cabinet Member going to take to ensure a high quality consistent diagnostic service is made available to all residents in Essex regardless of where they may live?’
Reply
‘I note that the Statutory Guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy (March 2015) states: ‘Clinical Commissioning Groups are expected to take the lead responsibility for commissioning of diagnostic services to identify people with autism, and work with local authorities to provide post-diagnostic support for people with autism (regardless of whether they have an accompanying learning disability, other hidden impairments or a co-occurring mental health problem).’
While lead responsibility for commissioning diagnostic services for adults rests with individual CCGs, ECC are working on common referral and diagnostic pathways in partnership with CCGs, those using the services, and service providers. Our approach is in line with the Essex Autism Strategy and our wider corporate outcomes.
Data relating to diagnostic pathways are collected via the Department of Health self-assessment framework submission provided annually by ECC (as with other authorities in England and Wales) with the latest submission presented to the Health and Wellbeing Board on 23 July 2015 where the position was reported as follows:
AN5
 North East Essex CCG has an adult ASD-3D (diagnosis, disclosure, and direction) service, fully integrated within its Health In Mind Improving Access to Psychological Therapies (IAPT) service. Referrals are accepted through GPs, and other agencies including Supporting Asperger Families in Essex (SAFE) and Autism Anglia. The current waiting time for ASD assessment is 10 months and this continues to reduce due to additional resources/increased assessments per week.
 South Essex provides a service for Asperger's diagnosis, through GP referral, typically for adults aged between 18 and 30 years old. Currently, the waiting time is over 2 years, but is expected to reduce over the next few months as SEPT will focus on reducing the waiting list.
 Mid and West Essex Clinical Commissioning Groups (CCG) have an ASD Diagnostic Demonstration Project in place. Referrals are accepted through GPs for adults 18 years old, with or without an accompanying learning disability or mental health condition. The service also offers bespoke advocacy throughout the diagnostic pathway to individuals who require this additional support. Current waiting times to begin the assessment process range from 2 to 107 days, with an average of 45 days.’ "

Please supply any information in any recorded form that might explain why someone in South Essex with Asperger's syndrome /autism has to wait TWO YEARS for the South Essex (part-time) Autism Service, for a diagnosis /support?

People with Asperger's in South Essex will get NO autism specific support (or accessible general support either) at all from local MH resource centre, and no emergency help either ("go to A&E").

Please supply any information which explains why so many with autism / Asperger's syndrome across Essex (and their carers) are left to suffer with no preventative or emergency support.

Please supply any information reflecting the associated priority-setting and decision-making, or anything that will explain why people with autism in Essex are ignored, neglected, uncared for and left to rot.

At an Essex County Council carer's assessment: "You are in a very difficult situation but we cannot help you. Join our walking group or try to find time to do something nice for yourself". (A faithful account of what was said).

The Essex Living Well website describes autism / Asperger's, but there are no links to services, only charities who cannot help. It's all window dressing.

The South Essex NHS Autism service probably dare not publicise their (part-time) service as they already have a waiting list of TWO YEARS.
Why is this valuable and desperately needed service not a full-time service?

Does NHS England realise this situation? If so, why has nothing been done to remedy this situation?

Why won't Essex County Council and the Essex local NHS authorities meet up and discuss this? There seems to be no local scrutiny or accountability.

Yours faithfully,

P. Smith

FOI England (NHS ENGLAND), NHS England

Dear Mr Smith,  

 

Thank you for your communication dated 17 August 2016.

 

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Freedom of Information

Corporate Communications Team

Transformation and Corporate Operations Directorate

 

NHS England

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REDDITCH

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‘High quality care for all, now and for future generations’

 

 

 

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FOI England (NHS ENGLAND), NHS England

Dear Mr Smith,

 

We are writing with regard to your Freedom of Information request dated 17
August 2016.

 

Please accept our sincere apologies for the delay in responding to your
request. Please be assured that we are continuing to progress your request
and will write to provide you with a further update on 22 September 2016,
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REDDITCH

B97 9PT

 

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Please do not reply to this email. This message has been sent from a
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Information (FOI) requests, enquiries or complaints we ask these are sent
directly to NHS England’s customer contact centre. This is to ensure all
communications are progressed correctly. Their postal address, telephone
number and email details are as follows:- PO Box 16738, Redditch, B97 9PT;
0300 3 11 22 33, [NHS England request email].

 

Yours sincerely,

 

Freedom of Information

Corporate Communications Team

Transformation and Corporate Operations Directorate

 

NHS England

PO Box 16738

REDDITCH

B97 9PT

 

Tel: 0300 311 22 33

Email: [NHS England request email]

 

‘High quality care for all, now and for future generations’

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P. Smith left an annotation ()

I have just heard that the waiting time for the South Essex Asperger Service is two and a half years now for diagnosis.

Is this true?

FOI England (NHS ENGLAND), NHS England

Dear Mr Smith,

 

We are writing further to our email of 15 September 2016.

 

Please accept our sincere apologies for the delay in responding to your
request, and for being unable to provide an update on 22 September, as
indicated in our last correspondence. Please be assured that we are
continuing to progress your request and will write to provide you with a
further update on 29 September 2016, if your response is not complete by
this time.

 

We apologise for any inconvenience this may cause. Please be aware, if you
are dissatisfied with the handling of your request you have the right to
ask for an internal review by writing to us, within two months of the date
of this letter, to:-

 

NHS England

PO Box 16738

REDDITCH

B97 9PT

 

Email: [1][NHS England request email] 

 

Please quote your reference number as provided above.

 

Please note, that as you have not yet received a response to your request,
any Internal Review will only be able to review the handling of your case
to date, and is unlikely to expedite a response.

 

If you are not content with the outcome of the internal review, you have
the right to apply directly to the Information Commissioner for a
decision. The Information Commissioner’s Office (ICO) can be contacted
at:-

 

The Information Commissioner’s Office

Wycliffe House

Water Lane

Wilmslow

Cheshire

SK9 5AF

 

Telephone: 0303 123 1113

Email: [2][email address]  

Website: [3]www.ico.gov.uk

 

If you have any queries about this request or wish to contact us again,
please email [4][NHS England request email] and the message will be
forwarded appropriately. Please remember to quote the above reference
number in any future communications.

 

Please do not reply to this email. This message has been sent from a
central mailbox. To communicate with NHS England regarding Freedom of
Information (FOI) requests, enquiries or complaints we ask these are sent
directly to NHS England’s customer contact centre. This is to ensure all
communications are progressed correctly. Their postal address, telephone
number and email details are as follows:- PO Box 16738, Redditch, B97 9PT;
0300 3 11 22 33, [5][NHS England request email].

 

Yours sincerely,

 

Freedom of Information

Corporate Communications Team

Transformation and Corporate Operations Directorate

 

NHS England

PO Box 16738

REDDITCH

B97 9PT

 

Tel: 0300 311 22 33

Email: [6][NHS England request email]

 

‘High quality care for all, now and for future generations’

show quoted sections

References

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1. mailto:[NHS England request email]
2. mailto:[email address]
3. http://www.ico.gov.uk/
4. mailto:[NHS England request email]
5. mailto:[NHS England request email]
6. mailto:[NHS England request email]

FOI England (NHS ENGLAND), NHS England

Dear Sir or Madam,

 

Re:      Freedom of Information request (Our Ref: FOI-011628)

 

Thank you for your Freedom of Information (FOI) request dated 17 August
2016. Please accept our sincere apologies for the delay in responding to
your request.

 

Your exact request was:-

 

“Please read below: A question to FULL council.

 

"ESSEX COUNTY COUNCIL MEETING

12 July 2016

Answers to Written Questions (standing order 16.12.1

 

[.....]

 

"4.  By Councillor Kendall of the Cabinet Member for Adults and Children
‘Autism is a major issue facing many families across Essex and a key
concern for many of them is the consistency of diagnostic service for
adults. I understand there are three different diagnostic services for
different parts of the county because they are commissioned by separate
CCGs and provided by different NHS Trusts. There currently seems to be an
inconsistency of referral route, waiting lists, and support offered all
based on where you live in the county. What steps is the Cabinet Member
going to take to ensure a high quality consistent diagnostic service is
made available to all residents in Essex regardless of where they may
live?’

Reply

‘I note that the Statutory Guidance for Local Authorities and NHS
organisations to support implementation of the Adult Autism Strategy
(March 2015) states: ‘Clinical Commissioning Groups are expected to take
the lead responsibility for commissioning of diagnostic services to
identify people with autism, and work with local authorities to provide
post-diagnostic support for people with autism (regardless of whether they
have an accompanying learning disability, other hidden impairments or a
co-occurring mental health problem).’

While lead responsibility for commissioning diagnostic services for adults
rests with individual CCGs, ECC are working on common referral and
diagnostic pathways in partnership with CCGs, those using the services,
and service providers. Our approach is in line with the Essex Autism
Strategy and our wider corporate outcomes.

Data relating to diagnostic pathways are collected via the Department of
Health self-assessment framework submission provided annually by ECC (as
with other authorities in England and Wales) with the latest submission
presented to the Health and Wellbeing Board on 23 July 2015 where the
position was reported as follows:

AN5

· North East Essex CCG has an adult ASD-3D (diagnosis, disclosure, and
direction) service, fully integrated within its Health In Mind Improving
Access to Psychological Therapies (IAPT) service. Referrals are accepted
through GPs, and other agencies including Supporting Asperger Families in
Essex (SAFE) and Autism Anglia. The current waiting time for ASD
assessment is 10 months and this continues to reduce due to additional
resources/increased assessments per week.

· South Essex provides a service for Asperger's diagnosis, through GP
referral, typically for adults aged between 18 and 30 years old.
Currently, the waiting time is over 2 years, but is expected to reduce
over the next few months as SEPT will focus on reducing the waiting list.

· Mid and West Essex Clinical Commissioning Groups (CCG) have an ASD
Diagnostic Demonstration Project in place. Referrals are accepted through
GPs for adults 18 years old, with or without an accompanying learning
disability or mental health condition. The service also offers bespoke
advocacy throughout the diagnostic pathway to individuals who require this
additional support. Current waiting times to begin the assessment process
range from 2 to 107 days, with an average of 45 days.’ "

 

Please supply any information in any recorded form that might explain why
someone in South Essex with Asperger's syndrome /autism has to wait TWO
YEARS for the South Essex (part-time) Autism Service, for a diagnosis
/support?

 

People with Asperger's in South Essex will get NO autism specific support
(or accessible general support either) at all from local MH resource
centre, and no emergency help either ("go to A&E").

 

Please supply any information which explains why so many with autism /
Asperger's syndrome across Essex (and their carers) are left to suffer
with no preventative or emergency support.

 

Please supply any information reflecting the associated priority-setting
and decision-making, or anything that will explain why people with autism
in Essex are ignored, neglected, uncared for and left to rot.

 

At an Essex County Council carer's assessment: "You are in a very
difficult situation but we cannot help you. Join our walking group or try
to find time to do something nice for yourself". (A faithful account of
what was said).

 

The Essex Living Well website describes autism / Asperger's, but there are
no links to services, only charities who cannot help. It's all window
dressing.

 

The South Essex NHS Autism service probably dare not publicise their
(part-time) service as they already have a waiting list of TWO YEARS.

Why is this valuable and desperately needed service not a full-time
service?

 

Does NHS England realise this situation? If so, why has nothing been done
to remedy this situation?

 

Why won't Essex County Council and the Essex local NHS authorities meet up
and discuss this? There seems to be no local scrutiny or accountability.”

 

 

NHS England does not hold information in relation to your request.

 

It may help if we explain that the NHS in England is not a single
organisation but is made up of a range of organisations such as Hospitals,
Clinical Commissioning Groups (CCGs) and Ambulance Trusts. NHS England is
responsible for commissioning primary care services such as GP and dental
surgeries, as well as some specialised secondary care services. Therefore,
any recorded information NHS England may be able to provide in response to
an FOI request will generally relate to the services NHS England
commissions. For information on commissioned services and the types of
information NHS England holds can be found on our [1]website and
[2]publication scheme. For further information on the NHS, its structure
and other NHS organisations please refer to NHS Choices [3]here.

 

As such, you may wish to redirect your enquiry to individual CCGs. You can
find CCG contact information on the NHS Choices website at the following
web link:

 

[4]http://www.nhs.uk/ServiceDirectories/Pag...

 

We hope this information is helpful. However, if you are dissatisfied, you
have the right to ask for an internal review by writing to us, within two
months of the date of this letter, to:

 

NHS England

PO Box 16738

REDDITCH

B97 9PT

 

Email: [5][NHS England request email]

 

Please quote the reference number FOI-011628 in any future communications.

 

If you are not content with the outcome of the internal review, you have
the right to apply directly to the Information Commissioner for a
decision. The Information Commissioner’s Office (ICO) can be contacted at:

 

The Information Commissioner’s Office

Wycliffe House

Water Lane

Wilmslow

Cheshire

SK9 5AF

 

Telephone: 0303 123 1113

Email: [6][email address]  

Website: [7]www.ico.gov.uk

 

Please note there is no charge for making an appeal.

 

Please be aware that in line with the Information Commissioner’s directive
on the disclosure of information under the FOI Act, your request will be
anonymised and published on our website as part of our disclosure log.

 

Please do not reply to this email. This message has been sent from a
central mailbox. To communicate with NHS England regarding Freedom of
Information (FOI) requests, enquiries or complaints we ask these are sent
directly to NHS England’s customer contact centre. This is to ensure all
communications are progressed correctly. Their postal address, telephone
number and email details are as follows: PO Box 16738, Redditch, B97 9PT;
0300 3 11 22 33, [8][NHS England request email].

 

Yours sincerely,

 

Freedom of Information

Corporate Communications Team

Transformation and Corporate Operations Directorate

 

NHS England

PO Box 16738

REDDITCH

B97 9PT

 

Tel: 0300 311 22 33

Email: [9][NHS England request email]

 

‘High quality care for all, now and for future generations’

 

 

 

show quoted sections

References

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