Embedding paediatric genomic practitioners in neonatal and paediatric intensive care and paediatric neurology.
What is this project addressing?
15% of deliveries in the UK result in an admission to a neonatal intensive care unit (NICU).
However, initial clinical presentation may not accurately predict eventual clinical and developmental outcomes.
Genomic testing has the potential to transform and improve end-to-end care pathways in NICU, paediatric intensive care units (PICU) and paediatric neurology.
What are we doing?
We are introducing specialist nurse practitioners or genetic counsellors into NICU / PICU services at Nottingham University Hospitals and Cambridge University Hospitals NHS Trusts.
This new role of ‘link’ genetic counsellor/genomic nurse practitioner will form part of the paediatric team and clinical genetics service/Multidisciplinary Team (MDT) to enable more families to benefit from genomic testing.
Who are we working with?
NICU / PICU services at Nottingham University Hospitals and Cambridge University Hospitals NHS Trusts.
Progress and next steps
- NUH Data Analysts are on-board to provide assistance with evaluation.
- Translation of form into different languages to ensure all have the ability to properly consent.
- Continue to develop network for genomic practitioners and Clinical Nurse Specialist (CNSs).
Recording of a Genomics BITE session on the Workforce Transformation Project in NICU/PICU and Paediatric Neurology at CUH
Link: https://www.youtube.com/watch?v=XTPWJkn5Dz8
Meet our team
- Professor Dick Sandford, Project Lead and Clinical Director, Est GMSA (r.sandford@nhs.net)
- Marie-Anne O'Reilly, Senior Genetic Counsellor, NUH (marie.oreilly@nuh.nhs.uk)
- Col Spencer, Regional Programme Manager, EGMSA (colin.spencer@nuh.nhs.uk)