Lizzy and Gordon: subarachnoid haemorrhage from the other side of the bed

Lizzy had a substantial aneurysmal subarachnoid haemorrhage that left her critically unwell and in intensive care for a long time. A couple of years on, she and her husband Gordon sat down at the Brain symposium in Sydney and told the story from their side: the day it started, the tumultuous first weeks, what the team got right, what nobody explained, and how far she has come since.

There is nothing clinical to summarise here, which is the point. Most of us meet this disease in the first fortnight and then lose sight of the patient. This is what the rest of it looks like.

Why this is the right place to start

Chris Andersen’s systematic review found that fewer than 10% of SAH randomised trials over twenty years measured health-related quality of life. Christine Buckley of the Brain Aneurysm Foundation asks clinicians to remember that a patient who leaves hospital walking and talking may still be profoundly changed. Lizzy and Gordon are the case study for both.

Where this shows up in the program

ISAH 2026 has been deliberately built so lived experience is not a closing slot. Philip Talbot gives the first plenary on Wednesday morning, The Forgotten Survivors. On Friday afternoon the ISAH Futures session runs from foundations (Christine Buckley and Simone Russell) to Rethinking Recovery Beyond mRS and the core measurement instruments that will define what future trials have to report. And on the workshop day, people with lived experience sit alongside researchers and clinicians in the core outcomes consensus workshop, with an equal vote on what gets measured.

There is a lived experience registration category for survivors and family members who want to be in the room. Details on the registration page.

Listen above, or go to the full episode and transcript on NeuroResus.

ISAH 2026 runs 17–20 November at the Sheraton Grand Hyde Park, Sydney. See the program or register here.