THE FASD PATHWAY. Dr Patricia D. Jackson SACCH MEETING March 2016

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1 THE FASD PATHWAY Dr Patricia D. Jackson SACCH MEETING March 2016

2 Why do we need an FASD Pathway? Other countries recognise this as one of the commonest causes of learning disability In Scotland over the past 3 years we have only reported 44 cases. Clinicians are not confident in making the diagnosis. Unless we can identify these children we can not work out the best way to help them. Prevention of subsequent affected pregnancies.

3 What is the purpose of an FASD Pathway? To suggest a standardised approach to diagnosis of FASD To improve confidence in diagnosis To provide that information in a concise and easily accessed format To improve reporting of cases To improve the experience of children with FASD and their parents

4 Short Term Aims All mothers will be routinely screened for alcohol intake using recognised questionnaires at pre-birth and all possible post birth contacts e.g.; 6 week and (months). All Named Persons will be aware of the processes and procedures to follow All mothers who have an infant or child showing developmental problems and have a history of alcohol intake in pregnancy will have access to assessment and diagnosis using a multi-disciplinary team approach. Families will be offered either through specialist services or through their Named Person appropriate advice, information and help to promote and support their child s wellbeing. All Paediatric Protocols used to screen children with possible neurodevelopmental 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

5 Why Now? Scottish Government has alcohol intake, and harm from alcohol high on it s agenda. There is a robust approach to diagnosis available. Education and social care colleagues are keen to further develop effective ways of helping these children and their families. There is an increasing expectation from parents, particularly those who have taken on the care of a potentially affected child, to get the best possible care for that child.

6 Why Now? Midwives and Health Visitors have been training in a standardised approach to taking good alcohol use histories from pregnant mothers and in their preschool contacts, and ensuring accurate recording since (Pilot project in Highlands ) Educational Conferences have been sponsored by Scottish Government on FASD for: Midwives, health visitors, GPs and Paediatricians Social Care and Third sector colleagues Education colleagues teachers and Educational Psychologists The Knowledge Hub about FASD has been made available to all professionals through NES NHS Education for Scotland Fetal Alcohol Harm elearning resource Training sessions with Canadian FASD colleagues have been arranged by Scottish Government with an aim to improve the knowledge base for diagnosis within Scotland. A specialist clinical support peer group is being developed.

7 FASD PATHWAY DEVELOPMENT PROCESS Wide experience reference group involving Health, Education, Social Care,Third Sector colleagues and parents and carers has exchanged information and views over the past 18 months. Smaller core group has met to develop the Pathway of Care The Pathway utilises GIRFEC methodology to ensure comprehensive review and support of the children affected

8 What does the Pathway Document Contain? Brief information about FAS/FASD (with links to NES and other website resources) Short and Longer Term Aims How to ask about alcohol intake, and/or sources of possible previous information. Identification of children to be referred Use of GIRFEC and the well-being indicators in the management of the child, including checklists for invitees to the child planning meeting. How to make the diagnosis using the 4 Digit Code Post diagnosis planning Recording using national Support Needs System (SNS) Available resources Audit plan YOU DON T NEED TO READ IT ALL, JUST GO TO THE SECTION YOU NEED

9 FASD PATHWAY INTRODUCTION FACTS ABOUT FAS/FASD FASD COMMUNITY IDENTIFICATION OF CHILDREN USEFUL RESOURCES USE OF GIRFEC PROCESS DIAGNOSIS

10 Table 1 Identifying children Antenatal history of maternal alcohol intake Concerns for child s development or that of previous siblings. No known developmental problems Named person to initiate GIRFEC process Midwife to flag to HV for follow up in routine child health surveillance program All contact opportunities to discuss alcohol use to be taken Referral of child, with parental consent,to FASD Diagnostic service and Support services Child Plan to include health, education, social and emotional support Diagnosis confirmed Diagnosis not confirmed Review of progress through GIRFEC process Developmental concerns identified. Child to be referred for GIRFEC planning meeting

11 Possible Scenarios in Future Good alcohol history taken using ABI approach by GP or midwife early on in booking process Mother aware of possible harm and reduces or stops alcohol intake during pregnancy. Child is followed up in routine surveillance and no developmental problems are identified Mother may request specialist assessment of child s development to reassure, or because of concerns School may pick up signs of poor attention, problems with memory retention, poor organisational skills in the child and request paediatric assessment

12 Current situation Most likely to get referral as developmental delay, without clear alcohol history. New CHSP will require this information to be recorded Referrals will come to general clinics. Decisions will need to be made about the probability of FASD being the diagnosis and the skills of the practitioner to make the diagnosis. The Pathway should support any Paediatrician to feel more confident in making the diagnosis. Developing procedures for gathering pre-clinic information may be most helpful. Suggestions for who might hold helpful information at different stages is in the Pathway document.(checklists 1,2,3)

13 GIRFEC PROCESS Ante-natal 0-2years Named Person Child s Planning Meeting See Checklist1 Diagnostic Referral Support Services Child s Planning Meeting Child affected by alcohol in utero Pre-school 3-5 years Named Person See Checklist 2 Diagnostic referral Support Services Child s Planning Meeting Primary School 5-11 years Named Person See Checklist 3 Diagnostic Referral Support Services

14 Checklist 2: Who to invite/request information from? Parents/ Caregiver and any relevant family members requested. Health Visitor GP Member of FASD Diagnostic Team *Child and Family centre staff *Occupational Therapy *Speech and Language Therapy *Physiotherapist *Dietician *Nursery Staff representative *Family Nurse *Social worker *Paediatrician *Voluntary sector supporter *Mental Health worker Siblings Named Persons *If already in contact with child or parent

15 What to do as a parent/carer If you have concerns about your child s development, discuss these with your Named Person: 0-5 years - Health Visitor 5-11 Head Teacher

16 What to do as a midwife Take an alcohol history from expectant mother at the earliest possible opportunity Use Alcohol Brief Intervention (ABI). Review knowledge prior to interview with mother remember correct approach is critical Accurately record alcohol intake Transfer information to SMR If there are signs of FASD in the neonatal period or there are concerns about the mother s continuing alcohol consumption, arrange a child planning discussion following GIRFEC guidelines If the child appears well, you should still transfer alcohol intake information to the health visitor in case developmental concerns arise.

17 Suggested Questions for Alcohol Intake History If you already have a good reliable history of alcohol in pregnancy do not repeat the questions How was your pregnancy- were you healthy? Did you have any concerns? Do you remember how many weeks you were when you knew you were pregnant? Before you were pregnant how much would you drink during the week/ the weekend? Do you remember if you drank at the beginning and/ or the end of your pregnancy? Were there times when you drank more and times when you drank less? How many drinks would you usually have in a day? a week? a month? What about drugs and/or smoking? Did you drink alcohol during a previous pregnancy? How many units did you drink per week prior to this current pregnancy? Have you consumed any alcohol in the last 3 months? How many units are you drinking now? Did you drink alcohol during a previous pregnancy? How many units did you drink per week prior to this current pregnancy? Have you consumed any alcohol in the last 3 months? How many units are you drinking now?

18 What to do as a health visitor You are the named person for children aged 0 5 years Note if alcohol history has been recorded. If not, check with midwife. If there are no apparent developmental problems, follow routine surveillance (see Table 1).Record information about alcohol intake. If developmental concerns arise, arrange a Child Planning meeting (See Table 2) If further information about alcohol intake is needed, seek information as suggested on page 9 Looking for information about alcohol consumption You may want to use ABI Child planning meeting Explain process to parent. Consider invitees as per Checklist 1 or Checklist 2 Overview ongoing child plan with colleagues as determined at meeting Referral to FASD diagnostic process OR non-referral support package for child s problems planned See GIRFEC meeting outcome. See page 10 for Checklist 1; See page 12 for Checklist 2

19 What to do as a GP? Check for alcohol history on previous notes. Retrieve information from other health records. Take alcohol history if not available. Use ABI Refer with background information for neurodevelopmental assessment. Make sure parent is linked to appropriate support Be aware of child s plan from GIRFEC process

20 What to do as social worker or teacher If child pre-5, discuss concerns with child s health visitor (who is named person for child) to start pathway process If child is aged 5 11, the named person is the child s head teacher or designated person Social worker should discuss concerns with head teacher Head teacher as named person will check with school nurse as person with best access to child s previous health record about prenatal alcohol exposure information If there is a history of prenatal exposure to alcohol, named person to arrange child planning meeting with FASD reps present (See Table 2) If there is no history of prenatal alcohol exposure, named person to arrange child planning meeting (See Table 2) Named person to arrange review

21 What I need to do as a paediatrician Add FASD to my checklist for causes of developmental difficulties. If FASD is to be considered: Arrange FASD diagnostic assessment for the child and ensure mother is supported and well informed about process (including difficulty of making diagnosis) Use model diagnostic assessment (See relevant section) Attend Child Planning Meeting if at all possible See post-diagnostic plan (page??) SNS codes to be used: PK80. Fetal Alcohol Syndrome L254. Fetus with damage due to other maternal disease - synonym 'Suspected of fetal damage from maternal alcohol'

22 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. (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

23 Making the Diagnosis Pre assessment information gathering Parent and child prepared for clinic visit Paediatric assessment using 4-Digit code Psychological assessment Speech and language assessment OT assessment The Pilot project being run in Ayrshire, and others experience will advise about the best AHP assessment tools to use in Scotland.

24 4-Digit Code (Susan Astley) 1. Greatly increases diagnostic precision and accuracy through the use of objective, quantitative measurement scales, image analysis software, and specific case definitions. 2.Diagnoses the full spectrum of outcomes (FASD)observed in individuals of all ages with prenatal alcohol exposure. 3. Offers an intuitively logical numeric approach to reporting outcomes and exposure that reflects the true diversity and continuum of disability associated with prenatal alcohol exposure. 4.Documents the presence of prenatal alcohol exposure without judging its causal role. 5. Documents all other prenatal and postnatal adverse exposures and events that can also impact outcome. 6. Provides a quantitative measurement and reporting system that can be used independent of diagnostic nomenclature. 7. Can be taught to a wide array of health care and social service providers, thus greatly expanding the availability of diagnostic services.

25 What do you need? Normal facilities for measurement of growth, and head circumference A transparent ruler to measure eyes Lip philtrum guide available to download as an app (from Susan Astley see website slide 32) Soft ware package possibly.

26 Domains to be scored Growth Face CNS Alcohol History

27 Most children will not present with classic signs Epicanthal folds Flat nasal bridge Small palpebral fissures Railroad track ears Upturned nose Smooth philtrum Thin upper lip

Instructions for Deriving the 4-Digit Code B.2. Ranking the Facial Phenotype The FAS Facial Phenotype The face of FAS is distinguished by the simultaneous expression of three facial features : 1.

28 Instructions for Deriving the 4-Digit Code B.2. Ranking the Facial Phenotype The FAS Facial Phenotype The face of FAS is distinguished by the simultaneous expression of three facial features : 1. Small palpebral fissure lengths (2 or more standard deviations below the mean) 2. Smooth Philtrum (Rank 4 or 5 on the Lip-Philtrum Guide) Lip-Philtrum Guides 3.Thin upper lip (Rank 4 or 5 on the Lip-Philtrum Guide)

30 4-DIGIT RANK for Alcohol Exposure Prenatal Alcohol Exposure Category Description 4 High Risk Alcohol use during pregnancy is CONFIRMED. And Exposure pattern is consistent with the medical literature placing the fetus at high risk (generally high peak blood alcohol concentrations delivered at least weekly in early pregnancy). 3 Some Risk Alcohol use during pregnancy is CONFIRMED. And Level of alcohol use is less than in Rank (4) or level is unknown. 2 Unknown Risk Alcohol use during pregnancy is UNKNOWN. 1 No Risk Alcohol use during pregnancy is CONFIRMED to be completely ABSENT

31 4 Definite Structural and/or Neurological Abnormalities Static Encephalopathy Microcephaly: OFC 2 or more SDs below the norm. and / or Significant abnormalities in brain structure of presumed prenatal origin. and / or Evidence of hard neurological findings likely to be of prenatal origin. 3 Probable Significant Dysfunction Static Encephalopathy Significant impairment in three or more domains of brain function such as, but not limited to: cognition, achievement, memory, executive function, motor, language, attention, activity level, neurological soft signs. 2 Possible Mild to Moderate Delay or Dysfunction Neurobehavioral Disorder Evidence of delay or dysfunction that suggest the possibility of CNS damage, but data to this point do not permit a Rank 3 classification. 1 Unlikely No current evidence of delay or dysfunction likely to reflect CNS damage.

33 Reference to find out more about the 4-Digit Code Diagnostic Guide for FASD Diagnostic Guide for Fetal Alcohol Spectrum Disorders: The 4-Digit Diagnostic Code Third Edition Susan J. Astley, Ph.D. Professor of Epidemiology Center on Human Development and Disability School of Public Health and Community Medicine University of Washington Seattle, Washington, U.S.A.

34 Recording Really important that we are able to record number of children affected SNS Codes now available to use: PK80. Fetal Alcohol Syndrome L254. Fetus with damage due to other maternal disease - synonym 'Suspected of fetal damage from maternal alcohol' We will just record FAS or FASD initially. (Or in the new international nomenclature: with /or without facial sentinal features) If working in an area without SNS a separate system will need to be set up, but recording to the national system would be infinitely easier. May be possible to continue using the SPS Surveillence system?? Primary aim recording of accurate prevalence.

Pathway Model Child with known FAS/FASD or undiagnosed Neurodevelopmental problem Prebirth information from: Mother,Family, GP, Midwife, mental health support worker, CAMHS,Social

35 Pathway Model Child with known FAS/FASD or undiagnosed Neurodevelopmental problem Prebirth information from: Mother,Family, GP, Midwife, mental health support worker, CAMHS,Social work,police,criminal justice/children s Panel GIRFEC FASD Diagnostic Clinic Referral for Treatment and Family Support Audit of Service provision. Timescale for treatment Availability of provision Education services: nursery, primary, secondary schools. Educational psychologist

36 Different localities,different Solutions

39 KEY QUESTIONS FOR SIGN APPLICATION Key question 1 Do we screen adequately/positively for FASD in Scotland? Currently we know from populations similar to our own, but with a lower alcohol intake, and less damaging patterns of alcohol use, that we might expect FAS and for FASD per annum. Our only study so far with paediatricians reporting cases suggested < 50. So we have a major need to identify cases adequately. The national support needs coding system (SNS)can be used in Scotland to record cases identified, but currently no standardised screening approach is used by clinicians.

40 Key question 2 What is the best diagnostic tool to use to appropriately diagnose FAS and FASD conditions? World wide. a variety of diagnostic tool kits have been developed for the condition, and clinicians confidence in making the diagnosis would be greatly increased if a standardised approach, with available training on the method, was agreed for Scotland. Improved outcomes for children due to earlier identification and intervention has been demonstrated in other countries where a standardised diagnostic tool is used.

41 Key question 3 When is the key time to diagnose FASD to achieve optimum benefit to the child? Will increased awareness and earlier diagnosis of pre-natal alcohol affected children lead to better advice to parents and optimisation of the child s development, and a reduction in secondary health sequelae suffered by this group of children, particularly mental health problems?

42 Health Improvement Opportunities The proposed SIGN guideline will concentrate on improving the accurate and timely diagnosis of children with FAS/FASD. Programs have been developed and are already in place to increase awareness of the importance of alcohol abstinence during pregnancy (the NO Alcohol NO Risk campaign) and midwives trained in the importance of accurate alcohol intake recording for pregnant mothers. Mothers who have taken alcohol in pregnancy can be flagged through the universal child surveillance system. It may be that in future a tool can be developed to screen babies at birth for alcohol exposure in utero regardless of maternal history

Section F: Discussing the diagnosis and developing a management plan

Section F: Discussing the diagnosis and developing a management plan Section E: Formulating a diagnosis Information collected during the diagnostic assessment should be reviewed, ideally in a multi-disciplinary team context, to evaluate the strength of evidence to: Support