Supplementary written evidence submitted by The National Organisation for FASD (PHS0622)

The following supplementary evidence expands upon points made in oral evidence before the Health and Social Care Committee on 6 February 2024.

The Committee asked what can be done to better prevent incidence of FASD in England today.

Summary

1. The single most important thing the Health and Social Care Committee can do at this time is to scrutinise the work of the DHSC in operationalising the recommendations for improving outcomes on reducing alcohol exposed pregnancies and diagnosing and supporting people with FASD from DHSC[1] and associated bodies, including NICE[2], PHE[3]/OHID, CMOs[4] and SIGN[5]. This includes looking at policy, spending and administration as detailed below.

2. Government should produce a Green Paper based on the DHSC FASD Health Needs Assessment, examining how its recommendations can be implemented. This would lead to a White Paper and an FASD Prevention and Response Act.

3. The Committee should take evidence from the Secretary of State on points outlined below.

4. Establishment of an FASD Prevention and Response Fund equivalent at least to 0.1 – 0.2% of the alcohol duty to put UK spending in this area on par with other countries.

5. Stronger efforts at public awareness are needed, working with industry where possible, including importantly stronger labelling and posters at point of sale, such as Sandy’s Law in Ontario.
    

Background – The Time is Now

6. You are the parliamentarians at the helm now, when for the first time there is unanimity from all major public health bodies on recognising the importance of alcohol-free pregnancy and diagnosis and support for FASD. It's up to you to see those hundreds and hundreds of hours of the nation’s leading public health experts have spent scouring through the evidence and best practice from here and from other countries is not wasted. You are the people who can make your mark on history through oversight and further inquiry into Government’s response to what has been called a ‘hidden epidemic’.

7. If you are looking for a health-related area where this Committee can have profound impact on the health and wellbeing of this country and some of its most vulnerable, preventing alcohol exposed pregnancies and the further harm that can come from undiagnosed and unsupported FASD is that area.

8. The great strides you want to make in the nation’s health will never be possible if you don’t gear up to address this ‘hidden epidemic.’ People with FASD are in every service in this country, with an ineffective use of those services because the core underlying condition is not recognised. They are the ones for whom nothing seems to work, the people who are hurting most, falling through the cracks, ending up in dire circumstances that can be avoided. The DHSC Needs Assessment states, “Systematic reviews have emphasised the importance of developing interventions across the lifespan. In policy terms, this is a significant challenge. It needs a multi-sectoral approach that includes education, criminal justice and industry.”

9. Inaction on this issue is at great cost to the country. As the DHSC FASD Health Needs Assessment quotes, “Data on the economic costs of FASD in the UK are limited, and economic analyses from other countries are reliant on assumptions that may not be applicable in other settings. Nevertheless, there are some global studies that offer insight into the potential impacts FASD could be having on the UK economy and give a sense of the potential scale of the costs involved. Using older data from the US, the BMA cite an estimated annual cost of FASD to the United Kingdom of £2 billion.”[6] This is likely a conservative figure as it was based on a prevalence of 1%. A lot of this comes from lost productivity.

10. A group of more than 60 practitioners, commissioners, experts, and people with lived experience laid out best practice and next steps in The Time is Now: The National Perspective on Ramping Up FASD Prevention, Diagnosis and Support.[7]
     

WHAT IS FASD?
 

11. FASD is at its core organic brain damage that results from alcohol exposure before someone took their first breath. Alcohol is a teratogen, like thalidomide, and the fetus cannot defend itself.
     
12. According to SIGN 156[8] diagnostic guidelines now in effect in England, Scotland and Wales, to have a diagnosis you have to have evidence of pervasive and long-standing brain dysfunction … defined by severe impairment…in three or more …[of ten assessed] neurodevelopmental areas.”
     
13. More than 428 conditions co-occur with FASD.[9]  The DHSC says, “There is no ‘mild FASD.’ 
     
14. More people have FASD than autism. According to a gold-standard active case ascertainment study done by the University of Salford, 1.8 – 3.6% have FASD.[10] The WHO estimates 1% have ASD.[11]
15. The rates of FASD are higher for Children Looked After (27%)[12] and those who are adopted. One study showed a rate of prenatal alcohol exposure in 75% of adoption medicals[13].

16. Think of everything that exists for autism. Then imagine if none of that existed and how horrible that would be for those people and their families.
     
17. Those whose brains are being poisoned and their lives are being changed forever by alcohol before they enter this world should be top on the agenda of prevention of harm from alcohol.

18. The entire FASD community welcomes the invitation from the Chair for further contact with people with FASD and their families and National FASD would be happy to facilitate an opportunity for Committee members to meet these stakeholders.

19. We urge you to hear the voices of people with FASD who say, “Treat us with the same respect as others.”[14]

RECOMMENDATIONS

20. Government should produce a Green Paper based on the DHSC FASD Health Needs Assessment, examining how its recommendations can be implemented. This would lead to a White Paper and an FASD Prevention and Response Act. The Green Paper should cover:
     

20a. Steps taken to meet the needs identified for this population group in the DHSC FASD Health Needs Assessment for England. As outlined by DHSC, these are:

• “a lack of robust prevalence estimates in England
• “the importance of multi-sector working to support individuals through the life course
• “better training and awareness for health professionals
• “better organisation of services to improve accessibility
• “a need to develop innovative approaches to support those living with the condition”[15]
   

20.b Steps taken on the implementation of the recommended calls for improvement in quality of care in NICE Quality Standard 204.  This should cover how ICBs are implementing the below statements and an update on progress on developing Care Quality Commission guidance for inspectors on how to follow up regarding NICE Quality Standard 204:

• Statement 1 Pregnant women are given advice throughout pregnancy not to drink alcohol.
• Statement 2 Pregnant women are asked about their alcohol use throughout their pregnancy and this is recorded.
• Statement 3 Children and young people with probable prenatal alcohol exposure and significant physical, developmental or behavioural difficulties are referred for assessment.
• Statement 4 Children and young people with confirmed prenatal alcohol exposure or all 3 facial features associated with prenatal alcohol exposure have a neurodevelopmental assessment if there are clinical concerns.
• Statement 5 Children and young people with a diagnosis of fetal alcohol spectrum disorder (FASD) have a management plan to address their needs.

20.c. Steps for multi-sector workforce training on FASD and risks of alcohol and pregnancy as called for in DHSC and NICE.
 

20.d. Plans to ensure the CMOs guidelines on alcohol in pregnancy are understood across health and social care, education and other services and incorporated into PSHE materials. Government said in 2021[16] that there had been “no specific public health messaging re FASD” in what was then 5 years since the CMOs guidance changed.  Burying the alcohol and pregnancy guidance with alcohol harm messaging has been damaging.

21. The Committee should take evidence from the Secretary of State on the above points regarding the operationalisation of the DHSC FASD Health Needs Assessment and the NICE Quality Standard 204.
     

21.a. The Chair noted that an invitation to the Secretary of State is being considered. National FASD stands ready to assist the Committee staff in preparing for this session, including by providing insights from people with FASD and birth mothers of children with FASD. Stakeholders voices are critical.
 

22. Establishment of an FASD Prevention and Response Fund equivalent at least to 0.1 – 0.2% of the alcohol duty.

22.a. In 2020 Government provided one-off ~£500,000 funding. This came nowhere near investments in FASD in the US (>$30million[17]) and Australia (>$37 million[18]).

22.b. We do not accept there is no money available. The Office for Budget Responsibility estimates that the alcohol duty will raise £13.0 billion in 2023/24, increasing to £17.1 billion in 2028/29.[19] If only 0.1% of those funds were set aside that would mean £13-17 million per year to prevent alcohol exposed pregnancies and to support those with FASD. If 0.2% were used it would put the UK in line with the scale of other countries’ spending on FASD prevention and support.

22.c. Spend to save funds are needed for a wide range of cross-sectoral work, including at a national, regional and local level. On the national level the following types of work is needed:
 

22.d. A National Centre for FASD Clinical Excellence to spearhead national systemic change. The one part-time national clinic in Surrey could fill this role with additional funding. It currently cobbles together an annual budget of around £220,000 to see 40 of the most complex patients per year and supports wider groups developing around the country without formal commission to do so. There should be funding to implement the NHSE health needs assessment recommendation for a hub and spoke working model. To achieve this NHS England would seed funds for a time-limited period for a full-time project worker over 5 years, working alongside the national clinic. The goal would be to help England implement the called for changes. They would then be able to help shape and model business cases and establish the networks needed so that after that point in time local areas could take on the processes and embed the processes into their own pathways using where possible an invest-to-save model. This would mean long-term cost savings to the NHS as well as implementing NHSE’s own strategy. 

22.e. A national prevalence study (following on the scoping work being done at the University of York that is due in coming months and the earlier work from the University of Salford).

22.f. A UK National Linked Database for FASD – Designed to protect privacy but encourage research, this database would bring together records from NHS and private health settings that have not previously been available for research. These FASD records could then be linked to other population records including health, education, employment, crime, and social care, providing crucial insights into the characteristics and needs of people living with FASD, impacts and costs of FASD in the UK, and identify opportunities for improving outcomes. (See Appendix 1 for further information about the University of Bristol project on this database.)

22.g. Research. The Committee could consult with the UK FASD Research Collaborative for more on the needs in this area.
 

22.h. Training across health and social care as called for by NICE and DHSC.
 

22.i. Public awareness campaigns on par with tobacco in pregnancy programmes. See section 24.d. for examples.
 

22.j. Funding for Third Sector groups (including groups in the FASD UK Alliance) on par with other neurodevelopmental disabilities who are working at the frontline. The one funding call earlier in 2019/20 led to some world class materials being developed once the third sector had access to funding – that needs to be repeated and continued. 

23. As a side note, though we did not have time to cover this in the hearing, we also need Government and Parliament to stop using the phrase “Autism and Learning Disability” in carving out programmes and funding – and use instead the more inclusive phrase of ‘neurodevelopmental disabilities’. 
 

23.a. People with FASD are often excluded due to a narrow interpretation of learning disability that excludes people with IQs over 70 no matter what their executive function and adaptive behaviour challenges might be. This was ruled unacceptable by the Local Government and Social Care Ombudsman in an important case[20].

23.b. Government has invested more than £60 million in a new “Building the Right Support Action Plan” for people with learning disabilities and autism and  £1.4 million for mandatory training for Autism and Learning Disabilities - but these do not include FASD.

24. Stronger measures to increase public awareness, working with industry where possible. This includes stronger labelling and posters at point of sale.
     

24.a In early February 2024, National FASD commissioned OnePoll to do a national poll of 2000 people. Only 80% recognise CMOs guidance, but only a shocking 66% of 18-25 year olds knew the guidance (see poll stats in Appendix 2 at the end of this document).

24.b. Stronger labels that include words and using both black and red colours, to highlight the risks as have been implemented by Food Standards in Australia and New Zealand[21]. (We would however advocate for a different graphic, where the woman is refusing the drink rather than being x’d out). This is the label used in Australia and New Zealand.

This is an example of a possible alternative graphic that is more empowering and less stigmatising.

24.c. Posters at the point of sale would greatly raise awareness. Sandy’s Law in Ontario[22] is a possible model. A consultation could be held with stakeholders about the wording, for example to avoid the word “defect” – perhaps saying instead, “Drinking alcohol in pregnancy can cause lifelong damage to your baby's brain and body.”

24.d Campaigns or funding for campaigns like there were for raising awareness of the dangers of smoking in pregnancy- such as the campaigns from Public Health England.[23]

“Every Moment Matters” is an example of a campaign about the risk of alcohol in pregnancy from Australia that was funded by the Australian government[24].

25. Policy makers, industry and other alcohol harm groups need to prioritise this issue. Drinkaware should run campaigns, industry should use its considerable reach and ability to help education about the importance of alcohol-free pregnancy, including strong advertising for mocktails that are genuinely 0% ABV.  What can be more important than ensuring that use of your product is not damaging babies’ brains before their first breath?  
     

25.a The broader trends discussed by the other panellists and traditional alcohol harm groups do not apply when discussing alcohol in pregnancy. They are not prioritising reducing alcohol use in pregnancy. When it comes to alcohol in pregnancy the official UK guidance is there is NO known safe level, no safe time, and no safe type of alcohol.  We are not just talking about those who misuse alcohol.

26. There is a need for more data on alcohol and pregnancy.

26.a. The 2010 Infant Feeding survey (summarised in DHSC FASD Health Needs Assessment)[25]:

• 40% women drank alcohol during pregnancy, which was fewer than in 2005 (54%).
• This also showed that we need to shed misconceptions as to who is most at risk (and why only covering this under the “Children of alcoholic dependent families” programme as was previously done will not work). The 2010 survey showed mothers aged 35 or over (52%), mothers from managerial and professional occupations (51%) and mothers from a White ethnic background (46%) were more likely to drink during pregnancy.

26.b. A new infant feeding survey is underway and this is welcomed.[26]  However, we know that this is likely to not capture the full scale due to the need for motivational interviewing and the need for improvement in how questions are asked about unplanned pregnancy and exposure prior to confirmation of pregnancy.

26.c. The UK has 4th highest rate globally (41% drinking during pregnancy)[27] - The top countries were Ireland (60.4%), Belarus (46.6%), Denmark (45.8%), UK (41.3%), Russia (36.5%).

26.d. The UK rates are likely higher. As the DHSC Needs Assessment states, “The study does recognise significant limitations however, such as relying on people’s memory to record alcohol use, and inconsistent data on drinking patterns.”
 

26.e. A UK cohort study[28] suggested a higher proportion (79% drinking in the first trimester, declining thereafter). The McQuire (2019)[29] study based on ALSPAC data also showed 79%.

The Committee asked, “Is alcohol in pregnancy a problem in England?”

27. Yes – the scale of the problem of alcohol in pregnancy in England has not fully captured Government’s attention in the same way some other issues rightly have.

28. 77% UK women drink alcohol[30] and 45% of UK pregnancies are unplanned. [31] As mentioned above, the lower estimate is that 40% of pregnancies are unplanned.
     
29. This is compared to 11.5 % women smoke[32] in the UK and 8% smoke in pregnancy[33].
     
30. The Khan review has recommended £15 million[34] to combat smoking in pregnancy and there are no funds set aside for alcohol in pregnancy.
     
31. Studies[35] show alcohol does more damage – “Strong effect fetal growth, anomalies, growth, behaviour, cognition, language and achievement”.
     
32. 1 in 13 alcohol exposed pregnancies may have FASD[36]. Not a doctor in the world can yet tell you which will be the ones that will.

Better data collection is possible and needed

33. NICE Quality Standard 204 statement 2 should be operationalised. It says, “Pregnant women are asked about their alcohol use throughout their pregnancy and this is recorded….Women who wish to discuss their alcohol use should be asked about the quantity, frequency and pattern of drinking, and this should be documented in their maternity records. This information may also help support early diagnosis and treatment for children with fetal alcohol spectrum disorder (FASD).”

34. Women should be given information to help them understand why recording AEP is so important to their child’s future. It’s not enough to only ask at the booking appointment. We know one local area just had this feedback from maternity services who think the NICE QS has been met if asked at booking appointment – it has not.

35. There is a need for proper classification of prenatal alcohol exposure and FASD in digital systems
     

35.a. Alcohol-exposed pregnancies need to be confirmed or confirmed absent in the digital maternity record. It needs to be mandatory – which is not at the moment. To get accurate information, questions need to include lifestyle type questions about the date of recognition of pregnancy, dose, pattern and timing
 

35.b. We also need improvements in digital record tracking of those with FASD diagnoses and those at risk for FASD.

36. National FASD stands ready to support working in any area that advances prevention of FASD and improving the wellbeing and life chances of those exposed to alcohol in the womb.
     

Preventing Harm from Prenatal Alcohol Exposure:

Addressing the UK data blind spot

What is the problem and how can we address this?

• Landmark UK policy and guidance has called for urgent action to increase prevention, identification, and support for those affected by prenatal alcohol exposure and fetal alcohol spectrum disorder (FASD).1-3
• A paucity of national data undermines the feasibility of achieving this.
• We can address this critical FASD ‘data gap’ by establishing the first UK National Linked Database for prenatal alcohol exposure and FASD.
• This essential, world-leading resource would securely bring together de-identified FASD assessment records from NHS and private health settings that have not previously been available for research.
• Clinical records will be linked to health, social care, economic and criminal justice data - harnessing the rich data infrastructure available in the UK.
• Our extensive consultations with public and professional stakeholders (including those living with FASD) have demonstrated strong support for the creation of a UK national FASD database, confirmed the feasibility of establishing this resource, and has identified Trusted Research Environments to securely house this data.4,5
• We are seeking follow-on funding to make this critical resource a reality and would welcome contributions from the UK Government towards this – given the level of unmet need in our population, and the strong alignment of our objectives with contemporary data transformation and FASD policies. 
• A UK national FASD database would transform our understanding of this prevalent, yet poorly understood condition – offering crucial insights into clinical profiles, opportunity for prevention, and interventions to improve outcomes, amounting to significant societal cost savings and vast improvements in outcomes for those living with FASD.

A visual summary of the UK National Database for FASD (Nat-FASD) and further supporting evidence is provided overleaf.
 

We thank you for consideration of this supplemental evidence for the Health and Social Care Committee major inquiry on the prevention of alcohol-related harm.

Dr Cheryl McQuire*

Research Fellow in Public Health Evaluation

Email: cheryl.mcquire@bristol.ac.uk 

Population Health Sciences | Bristol Medical School | University of Bristol

Room 4.04, Canynge Hall | 39 Whatley Road | Bristol | BS8 2PS. Twitter/X: @cheryl_mcquire

*on behalf of the UK National FASD Database study team: Dr Cheryl McQuire, Amy Dillon, University of Bristol; Prof Raja Mukherjee, Surrey and Borders Partnership NHS Foundation Trust; Prof Penny Cook, University of Salford; Sandra Butcher, National Organisation for FASD; Andy Boyd, Director, UK Longitudinal Linkage Collaboration; Beverley Samways, University of Bristol; Dr Sarah Harding, University of Bristol

Figure 1: Visual summary of the planned UK National FASD Database (Nat-FASD); Blue boxes represent work packages (WPs), orange boxes represent overarching principles 1 FAIR principles for scientific data management and stewardship6; b NDD=neurodevelopmental disorder.

Further supporting evidence

•                                                                   The UK has the 4th highest rate of prenatal alcohol use globally.7
•                                                                   Prenatal alcohol exposure can lead to miscarriage, preterm birth, and lifelong neurodevelopmental conditions known as fetal alcohol spectrum disorder (FASD).8
•                                                                   2% - 4% of children in the UK general population are thought to have FASD,9-11 rising to nearly 1 in 3 among Looked After Children.12
•                                                                   The costs of FASD are enormous - exceeding costs for autism by 26% - due to high rates of health care needs, involvement with the criminal justice system and lost productivity.13
•                                                                   Publication of the National Institute for Health and Care Excellence (NICE) Quality Standard for FASD in 2022 sets the strongest precedent yet for improved prevention, assessment, and support for prenatal alcohol exposure and FASD.2
•                                                                   However, reliable and accessible data on FASD is not available. This makes it difficult to achieve important FASD research, policy, and healthcare goals.

The solution

• The UK government has called for a transformation in the way people’s information (data) is used to improve health.
• An important step towards addressing the FASD ‘data gap’ will be to produce the first UK National Linked Database for FASD. This would bring together de-identified FASD assessment records from NHS and private health settings that have not previously been available for research. These records would be stored in a trusted research environment, enabling researchers to use the data in way that protects people’s privacy. FASD records could then be linked to other population records including health, education, employment, crime, and social care.
• It would provide crucial insights into the characteristics and needs of people living with FASD, impacts and costs of FASD in the UK, and identify opportunities for improving outcomes.

References:

1. Department of Health and Social Care. Fetal alcohol spectrum disorder: health needs assessment. 2021.

2. National Institute for Health and Care Excellence. Fetal alcohol spectrum disorder. Quality standard [QS204]. 2022.

3. Public Health England (PHE). Maternity high impact area: Reducing the incidence of harms caused by alcohol in pregnancy. 2020.

4. Harding S, Samways, B., Dillon, A., Butcher, S., Boyd, A., Mukherjee, R., Cook, P., McQuire, C. Addressing the fetal alcohol spectrum disorder (FASD) ‘data gap’: Multi-method and multi-disciplinary public engagement to ascertain the acceptability and feasibility of establishing the first UK National linked database for FASD. International Journal of Population Data Science. 2023;8(2).

5. McQuire C. Addressing the fetal alcohol spectrum disorder (FASD) ‘data gap’. In. JGI Seed Corn Funding Project Blog 2022-2023: Jean Golding Institute, University of Bristol; 2023.

6. Wilkinson MD, Dumontier M, Aalbersberg IJ, et al. The FAIR Guiding Principles for scientific data management and stewardship. Scientific Data. 2016;3(1):160018.

7. Popova S, Lange S, Probst C, Gmel G, Rehm J. Estimation of national, regional, and global prevalence of alcohol use during pregnancy and fetal alcohol syndrome: a systematic review and meta-analysis. Lancet Glob Health. 2017;5(3):e290-e299.

8. Popova S, Charness ME, Burd L, et al. Fetal alcohol spectrum disorders. Nature Reviews Disease Primers. 2023;9(1):11.

9. McCarthy R, Mukherjee RAS, Fleming KM, et al. Prevalence of fetal alcohol spectrum disorder in Greater Manchester, UK: An active case ascertainment study. Alcoholism, clinical and experimental research. 2021;45(11):2271-2281.

10. Lange S, Probst C, Gmel G, Rehm J, Burd L, Popova S. Global Prevalence of Fetal Alcohol Spectrum Disorder Among Children and Youth: A Systematic Review and Meta-analysis. JAMA Pediatrics. 2017;171(10):948-956.

11. McQuire C, Mukherjee R, Hurt L, et al. Screening prevalence of fetal alcohol spectrum disorders in a region of the United Kingdom: A population-based birth-cohort study. Prev Med. 2019;118:344-351.

12. Gregory G, Reddy V, Young C. Identifying children who are at risk of FASD in Peterborough: working in a community clinic without access to gold standard diagnosis. Adoption & Fostering. 2015;39(3):225-234.

13. Greenmyer JR, Klug MG, Kambeitz C, Popova S, Burd L. A Multicountry Updated Assessment of the Economic Impact of Fetal Alcohol Spectrum Disorder: Costs for Children and Adults. Journal of Addiction Medicine. 2018;12(6).

Appendix 2

Recognition of the CMOs Alcohol in Pregnancy Guidance

OnePoll National Survey Results
2-5 February 2024

2020 UK Adults (weighted to be nationally representative on the basis of age / gender / region)

Feb 2024