Services for Foetal Alcohol Spectrum Disorders

Sandra Butcher made this Rhyddid Gwybodaeth request to Ayrshire and Arran NHS Board as part of a batch sent to 25 authorities

This request has been closed to new correspondence from the public body. Contact us if you think it ought be re-opened.

Roedd y cais yn llwyddiannus.

Dear Ayrshire and Arran NHS Board,

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, Ayrshire and Arran NHS Board

Thank you for your email.

 

We are obliged under the Freedom of Information (Scotland) Act 2002 to
provide any recorded information, we hold, (subject to exemptions) as
quickly as possible and in all cases, within 20 working days.

 

We will respond as soon as possible. 

 

For more information on the Act and to use the response calculator, please
visit http://www.itspublicknowledge.info

 

Kind regards

 

Tara Palmer

Freedom of Information Officer

Information Governance

14 Lister Street

University Hospital Crosshouse

Kilmarnock

KA2 0BE

Telephone: 01563 826112

Email: [NHS Ayrshire and Arran request email]

 

www.nhsaaa.net

 

Find us on Facebook at www.facebook.com/nhsaaa and Twitter @nhsaaa

 

We use 12 point Arial in all our correspondence to make it easier for
people to read.

All our publications are available in alternative formats.

 

dangos adrannau a ddyfynnir

Freedom of Information, Ayrshire and Arran NHS Board

2 Atodiad

Good Afternoon,

 

The statutory deadline for us to respond to your request was Tuesday 21^st
August. Please accept my sincere apologies for not meeting this deadline.
We take any request for information seriously and we regret on this
occasion we have fallen short of our normal standards in responding to
your request.  I am hoping to have the information for you early next
week, and will keep you advised.

 

As we have failed to comply with Part 1 of the Freedom of Information
(Scotland) Act 2002 (FOISA), by failing to respond to your request for
information within the timescale required by section 10(1) of FOISA, you
have a valid reason to request a review. I have attached the Scottish
Information Commissioner's (SIC) booklet - 'Your right to know'. To make
an appeal to the SIC you must first ask us for a review. Page 23 gives
examples of when you can ask for a review. I have also attached our
complaints procedure leaflet. 

 

Please do not hesitate to contact me should you require any further advice
or assistance.

 

Kind Regards

 

Tara Palmer

Freedom of Information Officer | NHS Ayrshire & Arran | Information
Governance

Telephone: 01563 826112 | Email: [1][NHS Ayrshire and Arran request email]

 

When replying please use [2][NHS Ayrshire and Arran request email]

 

dangos adrannau a ddyfynnir

Freedom of Information, Ayrshire and Arran NHS Board

1 Atodiad

Good Morning,

 

Request for Information under the Freedom of Information (Scotland) Act
2002

 

Once again please accept my apologies for any inconvenience caused by the
delay in responding to your enquiry.

 

Thank-you for your Freedom of Information request, please see the response
to your request below:

 

Request for Information

 

In light of the above information I would like to ask you to provide:

 

Q1. 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.

A1. NHS A&A does not have specific polices relating to FASD.

 

Q2. Any information you hold on services your Trust provided for FASD for

Q2a. prevention education following the 2016 Chief Medical Officers’
guidelines that the safest course is not to drink while pregnant or
attempting to become pregnant;

A2a. Since November 2015, 3,980 people have attended formal prevention
education training. Additionally, there is direct contact with women
across Ayrshire’s maternity services

 

Q2b. diagnosis for both children and adults;

A2b. We are aware of 198 children in Ayrshire who have, or have been
given, a diagnosis of neuro developmental disorder (prenatal alcohol
exposure) or similar; also commonly referred to as FASD.

          There is currently no way to diagnose adults with FASD in
Ayrshire and Arran, therefore numbers are not available.

 

Q2c. post-diagnostic care in the financial years beginning 2013, 2014,
2015, 2016, 2017 and 2018.

A2c. Post diagnostic care is given through our respective child health
services, i.e. community paediatrics or CAMHS. This includes partnership
working with education etc. We also have parent / carer support groups
within Ayrshire.

 

Q3a. 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.

A3a. Any paediatrician, neonatologist or psychologist could diagnose a
neurodevelopment disorder, but most would only do so with additional
training to support them. 

 

17 psychologists across CAMHS, Community Paediatrics, and the FASD pilot
team.  Please note that:

·         A substantial number of those clinicians work part-time and so
the WTE. establishment will be lower.

·         While a clinical psychologist might take responsibility for
giving a diagnosis this assessment normally requires input from other
professionals, including medical – Paediatrician or Psychiatrist or
potentially geneticist , Occupational Therapist, Speech and Language
Therapist.

·         The majority of the Clinical Psychologists identified here would
consult with the pilot FASD team prior to giving an opinion in relation to
FASD unless the question is very clear cut for either yes or no.

 

Q3b. 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.

A3b. NHS Ayrshire & Arran does not employ specifically trained
professionals for patients on the FASD spectrum.

 

Q4. Information on training provided to personnel in your Trust on FASD,
or provided by others and accessed by your personnel.

A4. Bespoke training is delivered to take into account the needs of the
audience.  However there is an annual training plan which is delivered
throughout the year, see below:

o FASD Full Day Training (9.30am – 4.30pm)

 

+------------------------------------------------------------------------+
|                Time period| No. of courses |No. of particiapants|
| | delivered | |
|---------------------------+-----------------------+--------------------|
| September 2016 – | 74 | 1251 |
| | | |
| January 2018 | | |
+------------------------------------------------------------------------+

 

Q5. 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?

A5. NHS Ayrshire & Arran do not send patients to the National FASD Clinic
in Surrey.

 

Q6. What was your budget for services for FASD in each financial year
since that starting in 2013 and including the current financial year? 

A6. Scottish Government funded a pilot study in 2014 and provided £430K
from August 2015 until September 2018.

 

Q7. Please provide copies of any agreed plans you have to expand the
budget or services in coming years.

A7. We do not have agreed plans to expand the budget beyond the 2018/19
level. However following on from the pilot, a further funding application
was approved by the Scottish Government for £500K ending March 2021.

 

I trust this response is helpful. However, under the Freedom of
Information (Scotland) Act 2002 if you are dissatisfied with our response
you are entitled to request a review. A request for a review must be made
in writing to Mrs Jillian Neilson, Head of Information Governance, NHS
Ayrshire & Arran, 14 Lister Street, University Hospital Crosshouse,
Kilmarnock, KA2 0BB or email [1][email address],
no later than 40 working days from 30 August 2018. You must provide your
name and address for correspondence, details of your original request and
say why you want a review. If our decision is unchanged following a review
and you remain dissatisfied with this, you then have the right to make a
formal appeal to the Scottish Information Commissioner at
[2]www.itspublicknowledge.info/Appeal

 

Please do not hesitate to contact me should you require any further advice
or assistance.

 

Kind Regards

 

Tara Palmer

Freedom of Information Officer | NHS Ayrshire & Arran | Information
Governance | 14 Lister Street | University Hospital Crosshouse |
Kilmarnock | KA2 0BE

Telephone: 01563 826112 | Email: [3][NHS Ayrshire and Arran request email]

 

[4]www.nhsaaa.net

 

When replying please use [5][NHS Ayrshire and Arran request email]

 

Find us on Facebook at [6]www.facebook.com/nhsaaa and Twitter @nhsaaa

 

We use 12 point Arial in all our correspondence to make it easier for
people to read.

All our publications are available in alternative formats.

 

 

 

[7]Our purpose signature block

 

dangos adrannau a ddyfynnir

Dear Freedom of Information,

Thanks very much for your very helpful response.

Yours sincerely,

Martin Butcher