Patient and Caregiver Meeting at NANOS 2024
Speakers at the BTSNZ Patient and Caregiver Meeting 2024 (from L to R): Dr Eric Ji, Assoc Prof Eng-Siew Koh, Lynda Tse, Mr Andrew Parker, Chris Tse
The inaugural Brain Tumour Support NZ Patient and Caregiver Meeting was held at Wellington Regional Hospital in Te Whanganui a Tara / Wellington on 8th June 2024, immediately preceding the 2nd Annual Conference of the NZ Aotearoa Neuro-Oncology Society (NANOS 2024).
Assoc Prof Eng-Siew Koh (L) and BTSNZ medical advisory board member Dr Melissa James
Around 80 people attended the Patient and Caregiver Meeting on Saturday morning with more watching remotely by Zoom. The meeting was opened by Wellington clinical nurse specialist (neurosurgery) and BTSNZ medical advisory board (MAB) member, Caroline Woon. Speakers included Chris Tse (chair, BTSNZ), Mr Andrew Parker (neurosurgeon, Wellington Hospital and BTSNZ MAB member), Dr Eric Ji (radiation oncologist, Wellington Hospital), Lynda Tse (long-term survivor of a GBM) and Associate Professor Eng-Siew Koh (radiation oncologist, Liverpool Hospital, Sydney, and chair of COGNO Australia).
Renowned Australian neuro-oncologist Assoc Professor Eng-Siew Koh delivered the keynote address “Future Directions in Neuro-Oncology”. Her presentation was both informative and enlightening, giving the audience an international perspective of brain tumour research and clinical trials in Australia and around the world. Lynda Tse, long-term survivor of a glioblastoma and wife of BTSNZ chair Chris Tse, gave a very personal account of her brain tumour experience. Both of these presentations embodied the characteristics of hope and empowerment, which were the dominant themes of the meeting.
Videos of all five presentations can be viewed here.
On Saturday afternoon, Brain Tumour Support NZ opened the NANOS 2024 Annual Conference with a Patient Focus session. BTSNZ chair Chris Tse praised the conference convenors and NANOS executive committee for having the foresight to hold this session at the beginning of the conference. “That NANOS has the foresight to not only include a Patient Track in the conference programme but have it as the opening session shows that the organisation truly puts patients at the centre of everything that it does,” Chris said.
BTSNZ chief executive Sarah Verran
Chris gave a presentation titled “Advocacy at Work” where he featured case studies of BTSNZ’s advocacy work, including the campaign to Pharmac to source an alternative supply of the chemotherapy agent lomustine. He urged the audience, largely made up of clinicians and researchers, to engage with BTSNZ as a way of advancing their own causes. “Patients have the power to effect change,” he said.
BTSNZ chief executive, Sarah Verran, presented on raising a child with craniopharyngioma, chronicling her lived experience with her daughter Ruby’s brain tumour diagnosis. Her heartfelt talk “Broken Crayons Can Still Colour” was a revealing look at how craniopharyngiomas, even though classified as benign tumours, can have serious and wide-ranging impacts on the child and family.
Also speaking to the wider impact of a brain tumour diagnosis were patients Bonnie Etherington and Heather Thurston. Both spoke about the challenges brought about by their diagnosis, including the loss of independence, loss of personal identity, changed relationships and the difficulty in accepting an uncertain future. Part way through the session they were joined on stage by their partners, which exemplified the impact of a brain tumour diagnosis on the caregiver and family.
The patient and caregiver testimonies were delivered with emotion, strength and elegance, and many in the audience were clearly moved. To conclude the Patient Focus session, Chris thanked all three speakers and noted the exceptional courage they had displayed in sharing their personal stories to the conference.
Bonnie Etherington and Heather Thurston