Services for Foetal Alcohol Spectrum Disorders

Alder Hey Children's NHS Foundation Trust did not have the information requested.

Dear Alder Hey Children’s 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

Whittaker Alex, Alder Hey Children's NHS Foundation Trust

Dear Ms Butcher,

Thank you for your request for information received on 24 July 2018. It
has been allocated the reference number FOI-2018-4184 and is being dealt
with under the terms of the Freedom of Information Act 2000.

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Information Governance Team
Alder Hey Children's NHS Foundation Trust
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Whittaker Alex, Alder Hey Children's NHS Foundation Trust

1 Attachment

Dear Ms Butcher,

Further to your request for information made under the terms of the
Freedom of Information Act 2000, received on 24 July 2018, please find the
Trust's attached response.

The allocated reference number for this request is FoI-2018-4184

We make every effort to process Freedom of Information requests in an
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Kind Regards

Information Governance Team
Alder Hey Children's NHS Foundation Trust
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Disclaimer: This e-mail may contain confidential and/or proprietary
information some or all of which may be legally privileged. If any
addressing or transmission error has misdirected this e-mail to you,
please do not read the content and notify the author by replying to this
e- mail with confirmation that received items will be destroyed
immediately. If you are not the intended recipient you must not use,
disclose, distribute, copy, print, or rely on this e-mail.

The information contained in this email may be subject to public
disclosure under the Freedom of Information Act 2000. Unless the
information is legally exempt from disclosure, the confidentiality of this
email AND YOUR REPLY cannot be guaranteed.

Where this email is received outside of the UK / EU : As a registered Data
Controller Alder Hey Children’s NH Foundation Trust is required to comply
with the principles of the Data Protection Act 1998 (Data Protection
Directive 95/46/EC) including, identifiable data / information is not
transferred outside the European Economic Area without adequate
protection. As an intended recipient you are expected to ensure the
security of the data within and comply with your countries data protection
laws or the above directive.

References

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