Services for Foetal Alcohol Spectrum Disorders

The request was successful.

Dear Barts Health NHS 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

Dear Sandra

Your Request for Information [FOI-480-18]

Thank you for your recent request for information. This will be processed in accordance with the requirements of the Freedom of Information Act (FOIA) and you will receive a response within the stipulated timescale.

The FOI Act defines a number of exemptions which may prevent the release of the information you have requested. We will assess the material and if any of the exemption categories apply, then the information may not be released. We will tell you if that is so. If the information you request refers to a third party then they may be consulted prior to a decision being taken on whether or not to release the information to you. We will let you know if that is the case and give you an indication of the timescale for providing the information. There may be a fee payable for the information you have requested. The fee must be paid before the information is released. We will inform you if this is the case.

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If you have any queries then please contact us at [Barts Health NHS Trust request email]

If you are dissatisfied on how your request has been handled, you can complain in writing to The Information Governance Manager, Barts Health NHS Trust: E-mail [Barts Health NHS Trust request email]

Postal address:
The Information Governance Manager,
c/o Archives and Records Centre,
Barts Health NHS Trust,
Lower Ground Floor,
9 Prescot Street,
Aldgate, London E1 8PR

If, after we have addressed your complaint, you remain dissatisfied with how we have responded, you are entitled to appeal to the Information Commissioner (Tel: 01625 545 745). Details are shown at www.ico.org.uk.

Yours sincerely,

Samir Kamil
Freedom of Information (FOI) Lead
Barts Health NHS Trust
9 Prescot Street
London E1 8PR
Email: [email address]
Website: www.bartshealth.nhs.uk

show quoted sections

Dear Sandra

 

Your Request for Information [FOI-480-18]

 

Thank you for your request for information and the available information
is attached below

 

Please accept our apologies for the delay in responding to you.

 

 

 

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.

 

Our response: We do not have a specific  policy on the diagnosis and post
diagnostic care pathway for patients with an FASD and no policy on
training specifically for managing patients with FASD.

 

Please note:  Most patients with FASD would be seen and managed by
community paediatricians, they are employed by East London NHS Foundation
Trust (ELFT).

 

 

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.

 

Our response: No services specifically offered for post diagnostic care
for children with FASD, however, Barts Health Maternity services do
provide leaflets on alcohol advice as part of the healthy eating in
pregnancy.  We provide general discussion during booking appointment. We
provide leaflets and directed mothers to National Childbirth Trust & NHS
Choices; If disclosed excessive alcohol consumption, we apply the
safeguarding policy and refer the mother to the specialist teams.

 

2)                  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.

 

Our response: No staff are employed specifically for FASD. We have 11
paediatric consultants who see a variety of patients which may include
FASD.

 

3)                  Information on training provided to personnel in your
Trust on FASD, or provided by others and accessed by your personnel.

 

Our response: No training offered specifically on FASD, however, Fetal
alcohol syndrome, like the myriad of other developmental disorders is part
of the paediatric training curriculum and all clinicians would be expected
to consider it in the differential diagnosis of any child with
developmental problems or dysmorphism.

 

4)                  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?

 

Our response: No patients referred to the National FASD clinic.

 

5)                  What was your budget for services for FASD in each
financial year since that starting in 2013 and including the current
financial year?

 

Our response: No separate budget for FASD.

 

7)            Please provide copies of any agreed plans you have to expand
the budget or services in coming years.

 

Our response: No plans to provide a budget for FASD.

 

 

 

If you are dissatisfied on how your request has been handled, you can
complain in writing to: The Information Governance Manager, Barts Health
NHS Trust, Email: [2][Barts Health NHS Trust request email]

 

Postal address:

The Information Governance Manager,

c/o Archives & Records Centre,

Barts Health NHS Trust,

Lower Ground Floor,

9 Prescot St,

Aldgate,

E1 8PR

 

If, after we have addressed your complaint, you remain dissatisfied with
how we have responded, you are entitled to appeal to the Information
Commissioner (Tel: 01625 545 745). Details are shown at
[3]www.ico.org.uk  

 

 

 

Yours sincerely,

 

Samir Kamil

Freedom of Information (FOI) Lead

Barts Health NHS Trust
9 Prescot Street
London E1 8PR

Email: [4][email address]

 

 

 

--------------------------------------------------------------------------

From: Sandra Butcher
[[5]mailto:[FOI #500491 email]]

Sent: 23 July 2018 12:55

To: FOI

Subject: Freedom of Information request - Services for Foetal Alcohol
Spectrum Disorders

 

Dear Barts Health NHS Trust,

 

I am writing as a volunteer researcher for the National Organisation for
Foetal Alcohol Syndrome-UK ([6]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.  
[7]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,
[8]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.
[9]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
([10]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

 

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Dear FOI,

Thanks for your response.

Yours sincerely,

Sandra Butcher