Dr Maggie Watts Director of Public Health NHS Western Isles

1. “In pregnancy: No alcohol - no risk” But why? Dr Maggie Watts Director of Public Health NHS Western Isles FASD Education professionals study event June 2014

2. The commonest preventable cause of mental retardation FASD is expensive FASD is common FASD is preventable

3. What is FASD? • Continuum of permanent lifelong birth defects caused by maternal consumption of alcohol during pregnancy including, but not only, FAS • Describes the full range of disabilities that may result from prenatal alcohol exposure

4. Why is FASD an issue? • Estimated worldwide prevalence of FAS of 0.5-2.0 per 1,000 live births • With 56,014 live births in Scotland (2013), presents potential of • 28-112 babies born in the year affected with FAS • Approx 440 –1800 children under the age of 16 • And 5 - 9 times more with FASD

5. Scotland’s drinking is a cause for concern • Scotland consumes just under 12 litres of pure alcohol per adult annually • Self-reported use of alcohol accounts for 55% of total sales • More than 2 in 5 women aged 16-44 years self report drinking above recommended limits Scottish Health Survey 2011

6. What is a unit of alcohol? • 750 ml Bottle of wine (13%) = 9.8 units • Standard measure of wine (125ml) =1.2 units • 70cl bottle spirits (40%) = 28 units • Standard measure (35ml) = 1.4 units • 2l cider (5%) = 10 units • 750 ml Buckfast (15%) = 11.3 units • Recommended maximum intake: • 3-4 units daily for men and 2-3 units for women with two days a week alcohol-free (ie 21 units for men and 14 units for women weekly) Pictures: Wikepedia

7. Drinking in pregnancy • Chief Medical Officer for Scotland advice – AVOID ALCOHOL WHEN PREGNANT OR CONTEMPLATING PREGNANCY. • In national surveys, 25-50% of women report consuming some alcohol during pregnancy • In practice, up to 60% of women report drinking alcohol in the three months before attending for antenatal booking appointment

8. Alcohol affects development http://www.people.virginia.edu/~rjh9u/hdevsum.html

9. Risk factors • Dose of alcohol • Pattern of exposure - binge vs chronic • Developmental timing of exposure • Genetic variation • Maternal characteristics • Synergistic reactions with other drugs • Interaction with nutritional variables • No alcohol, no risk

10. How common is FASD in Scotland? In the UK…. • We don’t actually know as we don’t have national systems to collect and record information about fetal alcohol harm • Scottish paediatric passive surveillance programme for FAS in children under 6 years of age • Experience from around the world – if you look for FASD, you will find plenty

11. Diagnosis is possible REQUIRES A MULTIDISCIPLINARY TEAM • We can do it – we have screening tools, coding and assessments as well as training. • Environment and Health – Paediatrics • Temperament and Mood – CAMHS • Cognitive processing • Clinical Psychology • Educational Psychology • Neuropsychology • Speech and Language Pathology • Occupational Therapy • Education

12. Developmental stages of 18 year old child with FASD Modified by Alberta Health Services 2013 from JodeeKulp

13. Diagnosis is necessaryfor prevention and to reduce secondary disabilities • Diagnosis before age 6 • Diagnosis of FAS not “FAE”: recognisablevs. invisible disability • Stable, nurturing home, 72% of life • Staying in each living situation for at least 3 years • Experiencing a good quality home • Eligible for Special Needs/Disability services • No experience of violence against self • Having basic needs met for at least 13% of one’s life Streissguth et al,1996

14. Psychiatric Services Employment Support Adoption & Care Services Specialist Education Services Justice & Legal Services FASD Income Support Addiction Services Community Services Healthcare Services

15. Secondary disabilities • Mental health concerns • Disrupted school experience • Trouble with the law • Institutionalisation • Inappropriate sexual behaviours • Alcohol and drug issues • Unplanned pregnancies • Parenting problems • Problems with housing/ homelessness • Problems with work • Dependent living • Premature mortality (suicide, accident) *Adapted from “Secondary Disabilities” Study by Streissguth et al,1996

16. What about mum? May: • be single parent • have other children • be drinking; may have drunk throughout pregnancies • be struggling financially, mentally and socially • be unable to cope – child(ren) taken into care • be unable to cope with care system and loss • have fetal alcohol spectrum disorder herself • be dead – through suicide or alcohol and drugs

17. Diagnosis is meaningful • Availability of expert advice • Skills training • Particular concerns: • Fostering and adoption • Childcare services • Education and social work

18. Simple strategies in primary class • Physical environment, attention and sensory load: • Rocking seats • Stress toys • Teacher has microphone • Clear instructions, verbal followed by written • Attention: • Small group focus • Tasks reiterated in writing • Low level of clutter

19. Sensory overload • Bunny hole • Pale colours • Curtaining • Little clutter Cognitive processing and attention:The line-up

20. Useful links www.fasaware.co.uk www.nofas-uk.org www.fasdscotland.com www.eurobmsn.org Thanks to my mentors and to the adults and children with FASD who matter so much.