Dear NHS West Leicestershire Clinical Commissioning Group,

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 Scotland 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 the light of these government statements that CCGs are responsible for commissioning services I would like to ask:

1) Please provide copies of any policies your CGG has on the commissioning of services for those with an FASD.
2) What services has your CCG commissioned to meet the ‘reasonable requirements’, as is your duty under Section 3 NHS Act 2006, of those in your area who have or may have Foetal Alcohol Spectrum Disorders as a result of antenatal exposure to alcohol, and what is your CCG doing to secure improvement in the physical and mental health of persons with Foetal Alcohol Spectrum Disorders and for the prevention, diagnosis and treatment of FASD (as is in your power under Section 3A NHS Act 2006)? Please release any information you hold concerning provision for:
a. prevention education following the 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 years 2013- 2018 from professionals including, but not limited to, paediatricians, GPs, nurses, psychologists, occupational therapists, speech and language therapists, mental health services and other disability support services to provide specialised intervention services for patients on the FASD spectrum across their lifespan?

3) Please release any information concerning how is your CCG exercising its duty (as specified under Section 14R NHS Act 2006) to securing “continuous improvement in the quality of services provided” to individuals with Foetal Alcohol Spectrum Disorders “for or in connection with the prevention, diagnosis or treatment” of FASD?
4) What is the budget for commissioned services for FASD in the current financial year? What was the budget in financial years beginning in 2013, 2014, 2015, 2016 and 2017?
5) Please release any agreed plans for service expansion for future years.
6) Has your CCG conducted, commissioned or assisted the conduct of research into any matters relating to the causation, prevention, diagnosis or treatment of Foetal Alcohol Spectrum Disorders, as is in your powers according to Section 5 NHS Act 2006 Schedule 1 (paragraph 13).
7) Does your CCG commission services from the National FASD Clinic? If so, what is the budget for this in the current financial year?
8) Please release any information concerning ways in which your CCG is fulfilling its duty (specified under Section 14Z, NHS Act 2006) to promote education and training related to FASD?
9) Do you have a lead person in your CCG on FASD? Please provide the name and role of the person responsible.
10) Please release any information concerning the steps are you taking or have you taken (according to your duty under section 14Z2 of the NHS Act, 2006), to involve individuals with FASD or their caregivers in “planning commissioning arrangements; in the development and consideration of proposals for change; in decisions affecting the operation of commissioning arrangements where implementation would have an impact on the manner in which services are delivered or the range of services available.”?
11) How many inquiries/requests/letters have you received from medical practitioners or patients/families in your area related to FASD in the years 2013-2018?

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.

Thank you in advance for your answers.

Yours faithfully,

Martin Butcher