What voluntary work have we done?
As members of the Blood Cancer Survivor Community, we have taken part in multiple studies, surveys and reviews to help understand patient outcomes and improve patient support.
Project – Minimising the burden of haematopoietic stem cell transplant (HSCT) through Patient Reported Outcome Measures (PROM’s)
This project aimed to identify the most important issues impacting allogeneic stem cell recipients and their families. It also sought to develop patient reported outcomes and outcomes measures (PROs/PROMs) upon which to design a patient-centre supportive care and survivorship service for transplant recipients.
Phase 1: (Nov – Dec 2022), Explorative qualitative survey. Completed by 84 patients who had undergone HSCTs at RAH (more than 12 months ago).
Phase 2: Explorative focus group engagement session and post session evaluation survey (Focus groups (circa 30 participants) scheduled for 14 April 2023)
Central Adelaide Local Health Network (CALHN) Stem Cell Transplant Service Clinical Review – October 2022
We initiated an independent review into the CALHN Stem Cell Transplant Service at the Royal Adelaide Hospital (RAH). Our poor experience was used as the basis for the review. The review finds serious and long term deficiencies in the informed consent, education and post-transplant support. The recommendations, if fully implemented, will transform aspects of the service.
SA Parliamentary Selection Committee – The Future of Health Service
We presented a written submission and gave evidence to the parliamentary committee providing details on our poor experience with SA Health, Central Adelaide Health Network Cancer Program Haematology.
54th Parliament – 03/05/2018-19/02/2022
Health Services in South Australia
Transcript – 23. 19/10/2021
Graham has also spoken at a number of events.
Cancer Voices SA
As part of the “Survivor as Teacher” program, I presented my story to third year medical students from The University of Adelaide. This formed part of the preparation for their first hospital clinical placement.
The Hospital Research Foundation (THRF)
I acted as a cancer survivor representative to support the announcement of THRF funding for Dr Hannah Wardill’s research project into faecal transplantation (relating to Graft versus Host disease). You can watch the Channel 7 story here.
As part of the “First Person” program I presented my story to Leukaemia Foundation team members who may not always hear directly from people living with blood cancer.
National Strategic Blood Cancer Action Plan
- I was a consumer representative to the Optimal Care Plan (OCP) working group.
- I was a case study to support the national launch/announcement of OCP’s.
OCP Launch – Case Study
Personal experience as a Blood Cancer Survivor used a a case study to support the launch of the OCP’s