Patient Support

What we do…

CRBF is dedicated to significantly improving treatment options, optimal patient pathways, and survival outcomes for young sarcoma patients.

We do this in three important ways by:
• Raising vital funds for critical and innovative clinical research;
• Providing practical and personal guidance to support sarcoma patients, and their families, throughout treatment; and
• Raising awareness among health professionals and the general public to promote early detection and diagnosis.

CRBF patient support is in place for those who have been diagnosed with sarcoma,  and their families, providing national support in a number of “non-menu” ways.  We tailor our patient support programme to suit the individual, and all communication is strictly confidential.

An example of the assistance we have provided over the past four years includes but is not limited to:

  • Peer support, a warm and empathetic person with lived-experience 
  • Patient kits for newly diagnosed patients across Australia
  • Out of pocket expenses for IVF
  • Assistance in bridging the gap for experimental therapies
  • Grocery cards
  • Petrol cards
  • Assistance with gap payments for expensive medical procedures
  • Incidental expenses incurred as a result of sarcoma treatments
  • Practical support ie carer support, assistance navigating government agencies
  • Provision of meals
  • Assistance for those needing specialised equipment ie beds, oxygen, walking frames etc
  • The Fergus McCulla Psychological Support Programme (free of charge to sarcoma patients and families)
  • The Tom Hardyman Sarcoma Support Telephone Service  (to be launched 2022/2023)
  • Patient advocacy with medical teams and government organisations
  • Funeral expenses for those in financial hardship

Our growing patient support programme headed by Jack Gibson, sarcoma survivor & CRBF Patient Support Advocate, Keith Cox OAM, a recognised Australian expert in nursing support for young cancer patients, together with Mitchell Rice-Brading, Patient Care co-ordinator, will provide practical and personal guidance to support patients upon diagnosis and throughout treatme

Meet the team

Jack Gibson – Patient Advocate

‘I was diagnosed with osteosarcoma on 1st of February in 2017, not long after my twentieth birthday. My tumour was found by coincidence on an x-ray for an unrelated knee injury. Throughout the next seven months, I was treated at Chris O’Brien Lifehouse, undergoing surgery and continual chemotherapy. Fortunately, my treatment finished on 1st of September in the same year and over the next two or three months, normality returned to my life.

In September 2018, I was given an opportunity by the Cooper Rice-Brading Foundation to become involved with their mission to change the future for sarcoma patients. I am very familiar with the process of diagnosis and treatment for this disease, and these experiences provide me a chance to give a voice to the patients and their families who are going through the same process.

Thanks to Cooper’s incredibly brave efforts we now have a chance to increase awareness and accelerate the pursuit of a cure.’

 

Mitchell Rice-Brading – Patient Care Co-ordinator 

Mitch is Cooper’s much loved older brother, and he formed a critical part of Cooper’s team of palliative carers.  His first hand experience  with regards to the specific needs of young sarcoma patients is vast, comprehensive and very personal.

At 23, Mitch completed an undergraduate science degree, majoring in psychology at the University of Sydney, followed by his Honours year completed in 2021 with a view to completing a Masters or PhD in Clinical Psychology.  He is a provisionally registered Clinical Psychologist.

Mitchell volunteers as a trained mentor with Feel the Magic, an organisation dedicated to providing early intervention grief education programs for kids aged 7 to 17, who are experiencing pain and isolation due to the death of a parent, guardian, or sibling.

Mitch also volunteers his time with CRBF, to assist young patients and their families with an array of practical matters they may experience throughout treatment, thus providing a solid platform in which to be heard.

2015-07-10 Keith CoxKeith Cox – Medical Advisory Board/CRBF Director

Patient Support Medical Consultant

Keith was the Oncology/ Chemotherapy Nurse Practitioner at the Chris O’Brien Lifehouse until the end of 2017, after some 38 years in cancer nursing. He now remains involved in a consultant role.

Keith is a Senior Clinical Lecturer at the University of Sydney, and is an Accreditation Assessor for the Australian Nursing and Midwifery Accreditation Council (ANMAC)

As a Nurse Practitioner, Keith bore a greater responsibility than a regular nurse, prescribing medicine, ordering tests and screenings, and the referral of patients to other medical professionals.

Keith was awarded an Order of Australia Medal in the 2007 Queen’s Birthday honours list for his services to Cancer Nursing, his work with youth and his volunteer work.s

If you, or indeed someone you know, is in need of support after receiving a sarcoma diagnosis, please contact our patient support team by using the form below, or via phone 0412239020 or 02 9357 5378