East Lancashire Community Genetics Team Anne Edington Zunara Rafiq Coordinators East Lancashire
Where we work…….
East Lancashire Community Genetics Team Commissioned by East Lancashire Clinical Commissioning Group Manager Home-Start Genetic Counsellor. Pendle and Ribble Valley Clinical Lead Senior Coordinator Coordinator
I England average 3.9 ROSSENDALE 4.1 RIBBLE-VALLEY 5.3 HYNDBURN 4.2 BURNLEY 8.2 PENDLE 6.2 0 1 2 3 4 5 6 7 8 9 Infant mortality per 1,000 births
Genetics
Baby’s first check up
Genetic tests
Recessive inheritance In each pregnancy there is a In each pregnancy there is 25% chance of an affected a 50% chance that a child child when both parents are will be a carrier of the carriers of the same gene same gene change and change parents will not be Chance remains same in affected each pregnancy Cystic Fibrosis 1 in 25 UK Thalassaemia Tay Sachs More than 1000 other known recessive 13 disorders
CONSANGUINITY Consanguinity means of the same blood and it is marriage between blood relatives, ie, cousin marriage 20% of the worlds population live in communities that favour consanguineous marriage e.g. Pakistan, Bangladesh, Middle East, some Indian, Irish Travellers, some refugee groups. Why- social/tradition/caste 25% of cousin marriages in the UK are among white majority population 85-90% of cousin marriages go on to have healthy children. However 10-15% of consanguineous couples are at risk of having an affected child 14
https://www.youtube.com/watch?v=CtiEOgLauto https://www.youtube.com/watch?v=cBp_BYheJE4&t=58s
The Genetics Journey
Model of Community Genetic Service Home-Start Pendle and Coordinator Genetic Counsellor Ribble Valley Coordinates Recruit and provide normal HS Participates in Recruitment Referrals, visits, induction programme for Provides specialist training , reviews and end of Coordinator role. Triage referrals. support Upskill genetic awareness: Genetic supervision / ensure sessions with Health and Social correct information given to Provide regular ongoing care providers, SENCOs, Sixth family. supervision as per Home-Start forms, ESOL classes, Women’s Review presentations for UK guidelines groups. HS Volunteer Prep factual accuracy course Collation of data and Provides biannual in depth Responsible for sign off of preparation of reports workshops for health and social Quarterly report for CCG care staff
Process Map Referral to Community Genetic Service Referral with Consent Contact Genetic counsellor Triage/Guidance from Family GC advises referral to Supervision other NHS services Coordinator contacts e.g. Paediatrician, Family via tel/letter. Breast cancer history Arranges home visit Appropriate clinic . Family referral /coordinator attends NO GP for referral to Assessment visit. HS Policies – appropriate speciality Yes GDPR/Confidentiality/ Safeguarding . Coordinator and Family to attend GP to Written consent to hold generate referral to Manchester Genetics information within Home- Speciality refer onto Start and share with Genetic Manchester Genetics counsellor / named service providers . Take history. CGT ongoing support /Signpost NO and support/refer to other Review and end visits agencies
What exactly do we do? Support the Appointment offer of cascade at the Visit family at screening to Genetics Clinic home extended family Take family Referral to Re-visit to history CGT discuss results
2. Reducing infant mortality and life-long conditions 1. Joined up working 3. Reducing costs
Visit our website for more information www.communitygenetics.org.uk Anne Edington/Midwife Senior coordinator Tel: 01282 690536 / 07715 651504 E-mail: anneedington@nhs.net Thank you for listening Thank you
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