Children and Young Peoples Health Support Group May 2013 Fetal Alcohol Spectrum Disorders in Scotland What fetal alcohol harm is and why we should be concerned about it How it presents and what the long term consequences may be ID: 1038983
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1. Dr Maggie WattsFASD Co-ordinator for ScotlandChildren and Young People’s Health Support GroupMay 2013Fetal Alcohol Spectrum Disorders in Scotland
2. What fetal alcohol harm is and why we should be concerned about itHow it presents and what the long term consequences may beWhat can be done to ameliorate the conditionRecognition of fetal alcohol harm in ScotlandCurrent actions being takenNext stepsPresentation
3. FASD is commonFASD is expensiveFASD is preventable‘The commonest preventable cause of mental retardation’
4. Continuum of permanent lifelong birth defects caused by maternal consumption of alcohol during pregnancy including, but not only, FASDescribes the full range of disabilities that may result from prenatal alcohol exposureWhat is FASD?
5. Women’s drinking in ScotlandSelf-reported regular drinking above recommended limits1:3 women aged 16-25 years1:4 aged 25-34 years1:5 aged 35-44 yearsGirls aged 15 years drinking more than boysScotland consumes just under 12 litres of pure alcohol per adult per yearSelf-reported levels account for only 55% of total salesPost-pregnancy recall25 - 50% reported drinking in pregnancy Anecdotal evidence (ABI in maternity services)Up to 60% of women drinking in three months prior to attending for pre-booking appointment (9-12 weeks)
6. Alcohol affects developmenthttp://www.people.virginia.edu/~rjh9u/hdevsum.html
7. Estimated worldwide prevalence of FAS of 0.5-2.0 per 1,000 live births; 5-9 times more with remainder of FASD With 58,592 live births in Scotland (2011), presents potential of29-117 babies born each year affected with FAS450–1800 children under the age of 16 FASD prevalence
8. Physical differences size, congenital problemsBehaviours, especially when relating to othersaggressionmood swingsemotional labilityattention difficultyExecutive Function ability to plancomplex problem solving planningjudgementarithmetical tasksworking memoryHow does a child affected by fetal alcohol differ from others?Intelligence normal or low IQCommunication and speechspeaking too fast/too muchinterrupting Motor dysfunction Deficient social interactions lack of awareness Unusual physiological responses sleep disturbances Hyperactivity Deficits in verbal learningSensory impairment – vision and hearing problems
9. Developmental stages of 18 year old child with FASD Modified by Alberta Health Services 2013 from Jodee Kulp
10. Mental health concerns Disrupted school experienceTrouble with the lawInstitutionalisationInappropriate sexual behavioursAlcohol and drug issuesSecondary disabilities*Adapted from “Secondary Disabilities” Study by Streissguth et al,1996Unplanned pregnanciesParenting problems Problems with housing/ homelessness Problems with workDependent living
11. Diagnosis before age 6Diagnosis of FAS not FAE - recognisable vs. invisible disabilityStable, nurturing home, 72% of lifeStaying in each living situation, minimum of 2.8 yrsExperiencing a good quality home from 8-12 yearsEligible for Special Needs/Disability servicesNo experience of violence against selfHaving basic needs met for at least 13% of one’s lifeProtective factorsStreissguth et al,1996
12. Why make a diagnosis?Possible – we can do it (screening tools, 4 digit code, assessment)Meaningful – it makes a difference to the child and familyNecessary – for prevention and in order to reduce the secondary disabilities
13. In Scotland we recognise that there are gapsBased on: Prevention Detection and diagnosis Management
14. Scottish Government developmentsChanging Scotland’s relationship with alcohol: A framework for action (2009) Commitment to arrange a Scottish survey of the incidence of Fetal Alcohol Syndrome Focus on preventionABI in maternity servicesTarget for LARCFocus on detectionPaediatric surveillanceFocus on training and awarenessLearnPro e-learning module
15. Four levels of prevention Poole, N. (2008). Fetal Alcohol Spectrum Disorder (FASD) Prevention: Canadian Perspectives. Ottawa, ON: Public Health Agency of Canada
16. Focus on preventionLevel 1- universal – whole population approach to reducing consumption, licensingLevel 2 – Simple, consistent and uniform advice for expectant mothersCMO advice, Ready Steady BabyScreening and Alcohol Brief Interventions in maternity servicesLevel 3 – support for women with addiction issuesLevel 4 – post-partum supportEarly Years CollaborativeParentingLong Acting Reversible Contraception
17. Focus on detectionGuidelines for referral and diagnosisTraining, training, training for multidisciplinary teamPsychological assessmentsSupport for carers during diagnosis
18. Focus on management Availability of expert adviceSkills trainingParticular concerns:Fostering and adoptionChildcare servicesEducation and social work
19. Next stepsWorking towards a national policy on FASD addressing:prevention screening and surveillancediagnosticsmanagement and supportlinking across health, education, social care, justice and familiesincluding training, communication and research
20. Useful linkswww.fasaware.co.ukwww.nofas-uk.orgwww.fasdscotland.comwww.eurobmsn.org