Writing the Worlds of Genetic Medicine – a collaboration with Rich Gorman and Bobbie Farsides for the Wellcome Trust funded Eppigen Project.

In 2021 I was invited by Prof Bobbie Farsides and Dr Rich Gorman of Brighton and Sussex Medical School to collaborate on a unique qualitative research project, facilitating creative writing with a group of families affected by rare genetic conditions. This research programme was part of the Wellcome Trust funded Eppigen project.

You can read the research review paper by Rich Gorman and Bobbie Farsides, recently published in BMJ Medical Humanities HERE.


Gorman R, Farsides B Writing the worlds of genomic medicine: experiences of using participatory-writing to understand life with rare conditions Medical Humanities  Published Online First: 13 April 2022. doi: 10.1136/medhum-2021-012346

Twitter @SustainableRich, @Ethixbird @WellcomeTrust @eppigen

Ethics in Performance: Dying At Home

In May 2021, I was invited by Brighton and Sussex Medical School to take part in a conversation on zoom about dying at home for #DyingMattersAwarenessWeek.

Hosted by Bobbie Farsides, Professor of Clinical and Biomedical Ethics at BSMS, I shared the panel with end of life Doula, Li Mills and Palliative Care consultant Dr SImone Ali. The event was part of the Ethics in Performance series, and was an opportunity to read from and reflect upon the themes raised in my forthcoming memoir 36 Hours.

I have wrestled with the ethics of writing from life, which is why 36 Hours has been slow to enter the public domain. This event was a turning point because it was my first tangible opportunity to explore the work through the lens of the wider conversation about death and dying.

Following my husband’s death, I couldn’t find the book I wanted to read, so I wrote it. I didn’t want saccharine or euphemism. I wanted raw and real. I had always intended and hoped that 36 Hours might prove to be of some use to others going through a similar experience and that it might also prepare any reader for the possibility of caring for a loved one in the last stages of life.

The feedback from the event was positive and I’m grateful to have had the opportunity to share my writing in such a forum. I look forward to further such platforms to share this work.

My thanks to Bobbie, Li, Simone and the BSMS team for convening the event.