East Lancashire Community Genetics Team Anne Edington Zunara - - PowerPoint PPT Presentation

East Lancashire Community Genetics Team

Anne Edington Zunara Rafiq Coordinators East Lancashire

Where we work…….

Commissioned by East Lancashire Clinical Commissioning Group

Genetic Counsellor. Clinical Lead

Manager Home-Start Pendle and Ribble Valley Coordinator Senior Coordinator

East Lancashire Community Genetics Team

6.2 8.2 4.2 5.3 4.1 1 2 3 4 5 6 7 8 9 PENDLE BURNLEY HYNDBURN RIBBLE-VALLEY ROSSENDALE Infant mortality per 1,000 births

England average 3.9 I

Genetics

Baby’s first check up

Genetic tests

Recessive inheritance

13

In each pregnancy there is a 25% chance of an affected child when both parents are carriers of the same gene change Chance remains same in each pregnancy In each pregnancy there is a 50% chance that a child will be a carrier of the same gene change and parents will not be affected Cystic Fibrosis 1 in 25 UK Thalassaemia Tay Sachs More than 1000 other known recessive disorders

CONSANGUINITY

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

Consanguinity means of the same blood and it is marriage between blood relatives, ie, cousin marriage

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 Ribble Valley Coordinator Genetic Counsellor Recruit and provide normal HS induction programme for Coordinator role. Responsible for sign off of Quarterly report for CCG Upskill genetic awareness: sessions with Health and Social care providers, SENCOs, Sixth forms, ESOL classes, Women’s

• groups. HS Volunteer Prep

course Participates in Recruitment Provides specialist training , Triage referrals. Provides biannual in depth workshops for health and social care staff Provide regular ongoing supervision as per Home-Start UK guidelines Genetic supervision / ensure correct information given to family. Review presentations for factual accuracy Coordinates Referrals, visits, reviews and end of support Collation of data and preparation of reports

Process Map Referral to Community Genetic Service Referral with Consent from Family Assessment visit. HS Policies – GDPR/Confidentiality/ Safeguarding . Written consent to hold information within Home- Start and share with Genetic counsellor / named service providers . Take history. CGT ongoing support /Signpost and support/refer to other agencies Contact Genetic counsellor Triage/Guidance Supervision Appropriate referral Coordinator and Family to attend GP to generate referral to Manchester Genetics GC advises referral to

• ther NHS services

e.g. Paediatrician, Breast cancer history clinic . Family /coordinator attends GP for referral to appropriate speciality Coordinator contacts Family via tel/letter. Arranges home visit Speciality refer onto Manchester Genetics Yes NO NO Review and end visits

What exactly do we do?

Referral to CGT Visit family at home Take family history Appointment at the Genetics Clinic Re-visit to discuss results Support the

• ffer of cascade

screening to extended family

• 2. Reducing infant

mortality and life-long conditions

• 3. Reducing costs
• 1. Joined up working



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