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Services for Foetal Alcohol Spectrum Disorders

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Dear York Teaching Hospital NHS Foundation Trust,

I am writing as a volunteer researcher for the National Organisation for Foetal Alcohol Syndrome-UK (www.nofas-uk.org) to make a request for information under the Freedom of Information Act. I am working in cooperation with an ad hoc group of leaders from the organisation and other experts to frame and shape this research project and to analyse the information we receive.

Background

In February 2017, Lord Boateng asked the government “what assessment they have made of the measures adopted in Scotand which provide guidance and support for children and young adults affected by foetal alcohol spectrum disorders.” Lord O’Shaughnessy replied that “Early intervention services can help reduce some of the effects of Foetal Alcohol Spectrum Disorders (FASD) and prevent some of the secondary disabilities that result. Responsibility for commissioning these services lies with clinical commissioning groups. [Hansard, Written Question HL5052, 10 February 2017. https://www.parliament.uk/business/publi...

This government policy was reiterated in July 2017 when Lord Campbell-Savours asked the government “what support they are providing for persons whose condition has been described as foetal alcohol spectrum disorder.” [Hansard, Written Question HL500 and Written Answer, 18 July 2017, https://www.parliament.uk/business/publi... In response, Lord O’Shaughnessy for the government wrote that “It is recognised that Foetal Alcohol Spectrum Disorders (FASD) can have a significant impact on the early development of children, their behaviours and their life chances. Early intervention services can help reduce some of the effects of FASD and prevent some of the secondary disabilities that result. Responsibility for commissioning these services lies with clinical commissioning groups.” This was again repeated on 8 May 2018 by Steve Brine, Parliamentary Under-secretary at the Department of Health and Social Care. [Hansard, Written Question 139045, 8 May 2018. https://www.parliament.uk/business/publi...

The following conditions fall under the Foetal Alcohol Spectrum Disorder (FASD) umbrella: Foetal Alcohol Syndrome (FAS), Alcohol-Related Neurodevelopmental Disorder (ARND), Alcohol-Related Birth Defects (ARBD), Foetal Alcohol Effects (FAE) and partial Foetal Alcohol Syndrome (pFAS)) or neurodevelopmental disorders linked to prenatal alcohol exposure (NDPAE)

Request for Information

In light of the above information I would like to ask you to provide:
1) Copies of any policies that the Trust has on the prevention of FASD, and on the diagnosis and post-diagnostic care pathway for patients with an FASD. Also your policy on the training of Trust personnel to manage patients with FASD.
2) Any information you hold on services your Trust provided for FASD for
a. prevention education following the 2016 Chief Medical Officers’ guidelines that the safest course is not to drink while pregnant or attempting to become pregnant;
b. diagnosis for both children and adults;
c. post-diagnostic care in the financial years beginning 2013, 2014, 2015, 2016, 2017 and 2018.
3) Information on the number of Doctors in your Trust who currently provide diagnostic and/or post-diagnostic services for FASD? Please provide their names and posts. Whether your Trust employs specifically trained professionals, including but not limited to nurses, psychologists, occupational therapists and speech and language therapists, to provide specialised services for patients on the FASD spectrum? If so, in what specialties, and how many? Please provide their names and posts.
4) Information on training provided to personnel in your Trust on FASD, or provided by others and accessed by your personnel.
5) Information you hold on whether your Trust sends patients for FASD diagnosis to the National FASD Clinic in Surrey (https://www.fasdclinic.com/)? Did your refer any patients to the National FASD Clinic in 2013, 2014, 2015, 2016 and 2017, and in 2018, and if so, how many in each year?
6) What was your budget for services for FASD in each financial year since that starting in 2013 and including the current financial year?
7) Please provide copies of any agreed plans you have to expand the budget or services in coming years.
If you are considering rejecting this request on the grounds of the costs of responding exceeding the statutory limits then please respond to as many of the numbered items as possible within the limit, in the order they have been presented.

Yours faithfully,

Sandra Butcher

Freedom of Information Requests, York Teaching Hospital NHS Foundation Trust

Dear Ms Butcher
 
York Teaching Hospital has received your request.
 
We have allocated the reference 253-18 and will contact you in due course.
The Freedom of Information Act allows a period of 20 working days for
response. The due date for our response to you is 20^th August.
Sincerely
 
 
Andy Thompson
Information Governance Team
 
 
DISCLAIMER: This email may contain confidential and/or proprietary
information some or all of which may be legally privileged. It is for the
intended recipient only. If any addressing or transmission error has
misdirected this email, please notify the author by replying to this email
and destroy any copies. If you are not the intended recipient you must not
use, disclose, distribute, copy, print, or rely on this email. The
information contained in this email may be subject to public disclosure
under the Freedom of Information Act 2000. Unless the information is
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REPLY cannot be guaranteed.

Dear Freedom of Information Requests,

I am wondering if you ever were able to reply to this request, we have never received a response.

Yours sincerely,

Sandra Butcher

Freedom of Information Requests, York Teaching Hospital NHS Foundation Trust

Dear Ms Butcher,

Thank you for your email.

We apologise for the delay in getting back to you.

I shall chase this up immediately and we hope to be in a position to respond shortly.

Kind regards,

Information Governance Team

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Freedom of Information Requests, York Teaching Hospital NHS Foundation Trust

Dear Ms Butcher,

 

We write further to your earlier email and sincerely apologise for the
delay in getting back to you.

 

For York Teaching Hospital NHS Foundation Trust, this disorder represents
very small numbers and is one of many neuro -development disorders.
Therefore we do not provide specific services for this and it is included
within our main service.

 

1)           Copies of any policies that the Trust has on the prevention
of FASD, and on the diagnosis and post-diagnostic care pathway for
patients with an FASD. Also your policy on the training of Trust personnel
to manage patients with FASD.-  There are currently no policies in place
specifically for this disorder.

2)           Any information you hold on services your Trust provided for
FASD for

a.            prevention education following the 2016 Chief Medical
Officers’ guidelines that the safest course is not to drink while pregnant
or attempting to become pregnant; - All women accessing Maternity services
asked routinely what their alcohol intake is. All women are given guidance
on not drinking in pregnancy and there is information in the hand held
records (perinatal institute notes). Any required support would be offered
through referral to specialist services antenatally.

b.           diagnosis for both children and adults;- No specific
information held.

c.            post-diagnostic care in the financial years beginning 2013,
2014, 2015, 2016, 2017 and 2018.- No information held.

3)           Information on the number of Doctors in your Trust who
currently provide diagnostic and/or post-diagnostic services for FASD?
Please provide their names and posts. Whether your Trust employs
specifically trained professionals, including but not limited to nurses,
psychologists, occupational therapists and speech and language therapists,
to provide specialised services for patients on the FASD spectrum? If so,
in what specialties, and how many? Please provide their names and posts. -
We have a number of highly trained paediatric neuro-disability consultants
and therapists who are able to diagnose and manage all neurodevelopmental
disorders but no specifically trained FASD staff.

4)           Information on training provided to personnel in your Trust
on FASD, or provided by others and accessed by your personnel. - No
specific training provided

5)           Information you hold on whether your Trust sends patients for
FASD diagnosis to the National FASD Clinic in Surrey
([1]https://www.fasdclinic.com/)? Did your refer any patients to the
National FASD Clinic in 2013, 2014, 2015, 2016 and 2017, and in 2018, and
if so, how many in each year?- We may refer to the National FASD clinic if
appropriate, but hold no specific data on this.

6)           What was your budget for services for FASD in each financial
year since that starting in 2013 and including the current financial
year?- No specific budget, incorporated into main services budget.

7)           Please provide copies of any agreed plans you have to expand
the budget or services in coming years.- No agreed plans

 

Yours sincerely,

 

Andy Thompson

Information Governance Team

York Teaching Hospital NHS Foundation Trust

 

From: Sandra Butcher [mailto:[FOI #500688 email]]
Sent: 20 April 2019 13:54
To: Freedom of Information Requests
Subject: Internal review of Freedom of Information request - Services for
Foetal Alcohol Spectrum Disorders

 

Dear Freedom of Information Requests,

 

I am wondering if you ever were able to reply to this request, we have
never received a response.

 

Yours sincerely,

 

Sandra Butcher

 

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We don't know whether the most recent response to this request contains information or not – if you are Sandra Butcher please sign in and let everyone know.