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FASD, a hidden developmental disorder

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FASD, a hidden developmental disorder by Adoption UK, Scottish Government

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FASD, a hidden developmental disorder

  1. 1. FASD A Hidden Developmental Disorder FASD WORKSHOP SIRCC Conference June 2018
  2. 2. Terminology • FAS ( Fetal Alcohol Syndrome) • FASD ( Fetal Alcohol Spectrum Disorder) • FASD with or without sentinel facial features (Canadian terminology) • Neuro-Developmental Disorder due to Pre- Natal Exposure to Alcohol (NDPAE)
  3. 3. • Is FASD a significant issue? • How is the development of children affected prenatally by alcohol? • What progress is being made in identifying affected individuals? • Will earlier identification help?
  4. 4. Jones K.L and Smith D.W. Lancet 1973. 2.999-1001 - Introduction of the clinical term, “Fetal Alcohol Syndrome”
  5. 5. Is this a more relevant image?
  6. 6. “Babies and Alcohol don’t Mix!!” Chris Steer ; Neil McIintosh ; Debbie Miller. SCOTTISH PAEDIATRIC SURVEILLANCE UNIT FETALALCOHOL SYNDROME Survey Review May 29th 2013
  7. 7. Roozen* et al Reported World Wide Epidemiological Study Findings (noting “marked heterogeneity of study populations”) :- •Passive Surveillance Studies overall FAS prevalence 0.54/1000 (0-4.8) •Active Surveillance Studies overall FAS prevalence 3.24/1000 (0-14.97) FAS * FASD * Global prev.(10 Countries 2.9 22.8 Australia 1.3 1.1 Canada 37.2 30.5 Italy 8.2 47.1 N.Zealand 0.11 - S.Africa 55.4 113.2 USA 0.67 33.5 * rate per 1000 live births ; other countries included Brazil, Croatia, Israel and Sweden. *Roozen S et al. 2016 Alcohol Clin Exp Res 40(1) 18-32
  8. 8. Svetlana Popova, PhD, Institute for Mental Health Policy Research, Centre for Addiction and Mental Health Toronto Canada (lana.popova@camh.ca). CONCLUSIONS AND RELEVANCE Globally, FASD is a prevalent alcohol-related developmental disability that is largely preventable. The findings highlight the need to establish a universal public health message about the potential harm of prenatal alcohol exposure and a routine screening protocol. Brief interventions should be provided, where appropriate. • JAMA Pediatr. doi:10.1001/jamapediatrics.2017.1919
  9. 9. Scottish Paediatric Fetal Alcohol Syndrome Surveillance Study Data January 2010-December 2014 • 28/41 cases diagnosed under 12 months of age • 24 mothers aged 30yrs or older • Mean gestation at delivery 36.4 weeks • High rates of associated drug abuse and cigarette exposure • 9 mothers with psychiatric disorders • 13/41 with biological parent(s) • 7/41 with grandparents • Fostered/Adopted 18/41 • Siblings with known FAS 4 • 41 definite cases (IOM 2005 Criteria) in 60 months in under 6 yrs age group. Prevalence 0.19 /1000 live births Chris Steer ; Neil McIntosh ; Debbie Miller. SCOTTISH PAEDIATRIC SURVEILLANCE UNIT FETALALCOHOL SYNDROME Survey Review December 2014
  10. 10. [ * - comments included “too early to assess, will be evaluated later, awaiting assessment, delayed social smile, limited attention”] [ ** - comments included “ too young to assess, short concentration span, concentration difficulties, quite hyperactive, irritable at times (previous NAS), ADHD diagnosed and treated, short concentration span, behavioural problems”] [ *** - comments included “too young to assess, temper tantrums, attachment – overfamiliar with strangers but physical neglect, fearful of sudden noises, severe emotional and behavioural difficulties” ]
  11. 11. “Changing Scotland’s Relationship with Alcohol: A framework for action”, - ( a “whole population approach”) 1.reduced consumption. 2.supporting families and communities. 3.positive public attitudes and choices. 4.improved treatment and support. -“No Alcohol No Risk” CMO messaging 2016 -Minimum Unit Price for Alcohol 2018 Scotland and FASD ? Initiatives promoting Change
  12. 12. (Continued) Scottish Government (SG) Support for:- •Alcohol Brief Interventions in Primary care, A/E. Maternity Services, - ongoing, combined with Specialist Midwifery support •NES Learn-Pro FAS e-learning Modules 2012 ( www.knowledge.scot.nhs.uk/home/learning-and-cpd/ learning-spaces/fasd.aspx ) •Fetal Alcohol Spectrum Disorder Awareness Toolkit 2013 (www.gov.scot.Publications/2013/10/3881)
  13. 13. •Scottish Government Fetal Alcohol Spectrum Disorder Awareness Toolkit 2013 www.gov.scot.Publications/2013/10/3881)
  14. 14. ( www.knowledge.scot.nhs.uk/home/learning-and-cpd/learning-spaces/fasd.aspx ) *NES Learn-Pro FAS e-learning Modules 2012
  15. 15. •Maternity and Childrens FASD Advisory Group within Children and Families Directorate of SG -Liaison with important stakeholders e.g. Educational Psychology, Preconceptual (Nutrition) Care Group, Legal Services, Education, Social services, Voluntary Groups and support for research and educational initiatives to raise FASD awareness and improve clinical skills and confidence •SG support for Scottish Health Action on Alcohol Problems (SHAAP), - intercollegiate evidence based advocacy and lobbying group Drs Peter Rice and Eric Carlin (e.g. for minimum unit price machinations!) •SG support for Alcohol Biomarker (Meconium Alcohol Ester ) Study ( Published 2016 – Abernethy C et al Arch Dis Child. - http://dx.doi.org/10.1136/archdischild-2016-311686 ) Continued:-
  16. 16. Continued • SG support for the Ayrshire and Arran Multidisciplinary FASD Diagnostic Study (2016 et seq. Drs Sarah Brown, Jennifer Shields, Lorna Fulton and team) • SG support for the University of Manitoba outreach educational initiative,commenced 2013 and annual review visits since – Professor Anna Hanlon Dearman and FASD multidisciplinary group. (FASD seminars and interactive education sessions) • SG support for the Scottish National FASD Clinicians Forum, - 2015 et seq. – twice Yearly meetings, - lectures, presentations, case reports and peer interaction. • SG support to establish Scottish National FASD Care Pathway Dr Patricia Jackson and colleagues ( http://www.knowledge.scot.nhs.uk/scormplayer.aspx?ppkg url=/ecomscormplayer/fasdpathway/ ) Continued
  17. 17. Short Term Aims • To ensure routine recording of alcohol intake using recognised questionnaires pre- birth and all possible post birth contacts e.g.; 6 week and 27-30 (months). • All relevant persons will be aware of the processes and procedures to follow. • Any infant or child showing developmental problems where there is a history of maternal alcohol intake in pregnancy will have access to assessment and diagnosis using a multi-disciplinary team approach. • Families will be offered appropriate advice, information and help to promote and support their child’s wellbeing. • All Paediatric Protocols used to screen children with possible neuro-developmental delay will include diagnostic tests and parental questionnaires to actively look at the possibility of alcohol exposure in utero as an underlying cause. • Child planning meeting will include a professional who is experienced and trained in FASD diagnosis
  18. 18. Why wasn’t this happening already? • Poor recording of alcohol histories • Unreliable and varied approaches to history taking • Wariness to ask routinely about alcohol intake • Reluctance on part of paediatricians to consider FASD as a diagnosis • Lack of confidence in ability to make the diagnosis • Concern that patient/ parent relationship would be compromised • Lack of belief that it made any difference for the child
  19. 19. FASD Care Pathway Development • Wide experience reference group involving Health, Education, Social Care ,Third Sector colleagues and parents and carers exchanged information and views over an 18 month period. • Smaller core group met to develop the Pathway of Care • The Pathway utilises GIRFEC ( Getting It Right For Every Child) methodology to ensure comprehensive review and support of the children affected
  20. 20. The Fetal Alcohol Spectrum Disorder Diagnostic Pathway Scotland 2017 A range of problems known as Fetal Alcohol Spectrum Disorder (FASD ) can affect the baby if the mother drinks alcohol during pregnancy even before she knows she is pregnant. Identifying and supporting mothers and their children at the earliest opportunity is important. The FASD Pathway has been launched to help clinicians make a diagnosis as early as possible to provide support, and advise parents and carers how to seek help for their child. FASD Care Pathway http://www.knowledge.scot.nhs.uk/scormplayer.aspx?pkgurl=/ecomscormplayer/fasd pathway/ Webinar Introduction and Launch https://meetings.webex.com/collabs/url/iX0O7N9-NB17n- HhUp0ox9gT5bNMONShQ5rV9JBDy3C00000
  21. 21. Possible Symptoms in the Pre-school years • Infancy 'difficultness': • Hard to settle • Poor sleep pattern • Feeding problems • Premature/small birth weights • Born <36 weeks • Baby under 10th centile for head circumference and weight • Congenital heart disease • Irritable; failure to habituate • Failure to thrive • 0-2 years: • Excessive arousal, short attention • Atypical sensory responsitivity • Sleep problems • ADD with or without hyperactivity • Language delay • Developmental delay - fine motor skill impairment • Impulsivity • Distractible • Poor memory • Incorrigible • Challenging behaviours
  22. 22. • Preschool 3-5 years: • All of above plus: • Language delay • Delayed auditory processing • Unable to sit still or pay attention • Multiple sensory overload • Difficulties in forming friendships • Doesn't learn from mistakes • Can't do complex problem solving (maths) • Information processing deficits • Can't sort - numbers, sequencing • Verbal learning poor • School age: • Identified as requiring additional support • Lack of progress across Literacy Numeracy and health and wellbeing • Attention deficit, impulsivity, hyperactivity • Memory problems • Poor social/peer group interactions • Aggressiveness • Unable to sit still or pay attention • Multiple sensory overload • Doesn't have friends • Doesn't learn from mistakes • Can't do complex problem solving (maths) • Information processing deficits • Can't sort - numbers, sequencing • Verbal learning poor • Sensory processing difficulties • May have recorded learning disability • Can't read social cues • Repeats instructions but doesn't follow them • At risk from offending behaviour, known to the police School failure • Exclusion from school on multiple occasions • Sexually inappropriate
  23. 23. Sleep Dysregulation In FASD. DAYTIME SEQUELAE DISRUPTED MLT SECRETION/ DLMO PROBLEM INCREASED SENSORY SENSITIVITY POOR SLEEP HYGIENE/ENVIRO NMENT ETC. ADHD/ASD RELATED DISRUPTED SUPRACHIASMATIC PACEMAKER STRESS ANXIETY, ENVIRONMENTAL ADVERSITY MOOD DISORDERS FASD RELATED Global Brain damage with loss of neurones and connectivity DIET,MEDICATIONS, OTHER HEALTH ISSUES PRIMARY SLEEP DISORDERS E.G. OSAHS, PLMD SUMMATION/THESIS-
  24. 24. Co- morbidities with FASD
  25. 25. Streissguth et al 2004. N= 415 ( J. Dev Behav. Ped. 25(4) 228-38
  26. 26. How does this involve colleagues working in the Care Sector ? • Addiction services for women of child bearing age • Women in abusive situations • Women with mental health problems using alcohol as a support • Irritable poorly setting infants • Children with neurobehavioural problems particularly attention difficulties, oppositional and aggressive impulsive behaviours, autistic features. • Secondary presentations of mental health problems in young people associated with school failure, sleep fragmentation, depression, suicide, addiction • Encouraging vulnerable young women to use contraception if they can’t be persuaded not to drink excessively. • Anti social behaviour and prison terms
  27. 27. Diagnostic Process REFERRAL Child with developmental delay and history of maternal alcohol ingestion referred in for assessment PRE-CLINIC Information gathering to confirm/refute alcohol history. Possibly gathering of pre- clinic assessment information from AHP and Psychology colleagues,and other agencies (Depends on Clinic Model) *Preparation discussion with mother and child (if age appropriate) about possible diagnosis. DIAGNOSTIC CLINIC Examination of child Review of assessments and information. Scoring of domains using the 4-Digit Code System. Team Discussion DIAGNOSIS Formulation of Support Plan
  28. 28. So Let’s get the Message out there Think before you drink But if you did, get the right help for your child.
  29. 29. Team training, April 2017: Campaign Master, Salesforce & Eventbrite Adoption UK in Scotland Aliy Brown parent of a child with FASD – helpline advisor and office coordinator Alison Parkinson helpline advisor and education coordinator
  30. 30. FASD and our children
  31. 31. FASD and our children • Back story • What did we notice and why we thought it was different to trauma/attachment • What effects this has on day to day life • How this can be missed by others • Why diagnosis matters • Accepting and reframing
  32. 32. 9 Brain Domains Executive functioning Sensory & motor Academic skills Brain structure Living & social skills Focus & attention Cognition Communication Memory
  33. 33. Developmental differentials in FASD 1820 8 6 16 11 7 Emotional maturity & comprehension Money & time ability Verbal ability Actual physical age Reading age Living skills Social skills Image reproduced from information in Maria Catterick’s book: Understanding Fetal Alcohol Spectrum Disorder, JKP (2014), data presented by Malbin 2008
  34. 34. What do we do? • Established in 1971 • A voluntary organisation providing information, support, training and advice • Set up by adopters – for adopters • UK-wide with offices in England, Northern Ireland, Scotland and Wales
  35. 35. What do we do? • Telephone helpline - local and central • Peer support services – volunteer led support groups, buddy scheme, parent consultant • Family events – picnics, parties, Wiston Lodge • Website- online community, monitored forums, articles and information
  36. 36. Contact Adoption UK in Scotland • Dedicated Scotland Helpline : 0131 201 2489 (open Monday – Friday, 10am to 2.30pm) • Email: scotland@adoptionuk.org.uk • Facebook: @AdoptionUKScotland https://www.facebook.com/AdoptionUKScotland/ • Twitter: @AUKScot https://twitter.com/AUKScot • Website: http://www.adoptionuk.org/scotland • Edinburgh Office: 0131 201 2488
  37. 37. Thank you!

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