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judith.dando

Libby's legacy - YouTube

https://www.youtube.com/watch?v=_S3pvXMD3y8

University Hospitals Bristol and Weston NHS FT case-study submitted by Phillips Ives Review PMO on behalf of Tracie Miles RGN, PhD, Associate Director of Nursing and Midwifery, NHS South West Genomic Medicine Service Alliance.

A mother whose daughter died from cancer after treatment at the Royal United Hospital (RUH) in Bath has spoken about the value of joining the 100,000 Genomics Project for research and for helping her to come to terms with her grief.

Diane Woodland’s daughter Libby volunteered for the project after she was admitted to the RUH and diagnosed with a rare cancer. She died aged 25 in August 2018.

Diane said: “The doctors told us they’d never seen a cancer before like the one Libby had and they didn’t know what treatment to give her. “My deepest fear was that, having produced Libby and her brother George, it was something my husband and I had passed on to her.

”Tracie Miles, RUH gynaecology clinical nurse specialist for Gynaecology cancer and legacy genomics practitioner, recruited Libby to the 100,000 Genomics Project through the West of England Genomic Medicine Centre (WEGMC) while she was being treated at the hospital.

The national project was a major NHS initiative to sequence 100,000 genomes from patients with rare inherited diseases or with cancer and to transform NHS services to include genome sequencing as standard care for future patients. The ambitious aim to sequence 100,000 genomes (DNA sequences) from NHS patients was reached in December 2018.

The current focus for the local WEGMC teams is on returning results to patients and their families, where appropriate, and also sharing the important impact that this project, and genomic medicine in general, will have on future patients locally, nationally and potentially across the world.


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