Transforming feto-maternal pathways to reduce inequity of access to genomic testing


We know that inequity of access exists in healthcare, and access and care in pregnancy relating to genomics is no different.

This project is working on ways to tackle inequity of access to prenatal and postnatal genomic testing for fetal abnormalities across the North East and Yorkshire.  We have also received interest from the NHS in adopting our approach nationally.

What are we doing?

The project is focusing on several areas within maternity care including:

  • clinical pathway mapping
  • referral pathways
  • multi-disciplinary (MDT) discussion
  • tests that are offered
  • how results are communicated to patients
  • bereavement care
  • follow up in future pregnancies
  • providing a digital infrastructure to support the other work

What have we done so far?

Completed mapping of the current pathways in Leeds, Newcastle and Sheffield and comparisons and recommendations for change made.

Engagement with digital teams to make changes with patient record systems

Liaised with charities involved in bereavement care to understand the patient perspective and what is important to change for them

Engaged with our local community midwifery teams to empower them to make early referrals to the clinical genetics team – giving their women more time and options for genomic care.


How will this project make a difference?

The project will provide parents with equal access to genomic testing during pregnancy to help them to plan and make informed choices about their care.


 

Resources


Staff Resources

The Genomic Education Programme’s full range of education resources and courses:

GEP Educational Resources

Podcasts: Genomics in Midwifery – an exploration of how midwifery is changing as a result of genomics, how midwives will support the NHS Genomic Medicine Service, and what midwives need to know:

Genomics in Midwifery – Podcast list

GeNotes: A range of quick, concise information to help healthcare professionals make the right genomic decisions at each stage of a clinical pathway:

Genomics Education GeNotes

The Genomics hub at the RCOG:

RCOG Genomics Hub

Pre-Natal invasive testing videos and information leaflets:

Pre-natal Invasive Testing videos and information resources

Fetal Genomics Staff Resources: These films and resources have been produced to support your existing knowledge relating to genomic testing in pregnancy:

Resources for Fetal Genomics Staff

Peri-Gen Passport:

Your Peri-Gen Passport, a record of your journey through the Genomic Testing Pathway


Patient Resources

Pre-Natal invasive testing videos and information leaflets:

Pre-natal Invasive Testing videos and information resources

Patient Flashcard and Poster:

The flashcard and poster contain a QR code to assist in directing people to the videos when considering an invasive test. The poster is designed to be displayed in the waiting areas of the relevant departments, such as fetal medicine, and the flashcard can be printed to assist you in the counselling you provide.

 

A5 Flashcard

A3 Poster

How can I learn more?


Discuss with us how we are doing this and how our work can be applied in your region.

Contact us to learn more.

[email protected] 

Our project team are:

Dr. Kelly Cohen, Project Lead, Consultant in Fetal Medicine

Dr. Jennifer Campbell, Project Lead, Consultant in Clinical Genetics

Dr. Abigail Hyland, Clinical Fellow in Fetal Genomics

Denise Barnes, Lead Midwife for NEY GMSA

Dr. Michael Wright, NEY GMSA Clinical Director