BTAA Summit and Consumer Forum – what we learned

Dominique Longshaw reports from the BTAA Summit held at Cancer Council Queensland in October 2015.

The 3rd Brain Tumour Alliance Australia (BTAA) National Summit was a cross collaboration between health professionals, several community-based brain tumour support advocacy groups, and support groups from across Australia. A total of 32 delegates included people with brain tumours, their carers, parents of children with brain tumours, as well as several advocates who have lost loved ones to brain tumour.

BTAA facilitated an update on local state activity from each of the representatives. Highlights included: the mobilisation of funds being raised for brain tumour research – both clinical and psychosocial, the philanthropic funding for a brain tumour care coordinator, and our discussion around the need to raise more awareness and funds for research in childhood brain tumours. There was a sense of collegiality between the variety of delegates.

Across lunch, a further 30 people with brain tumours, along with their family and friends joined us for our supportive care forum. Outcomes from this program included:

  • People connecting with one another in a safe space, being given the opportunity to ask questions of a program of experts.
  • Gaining an understanding of the latest in how emerging treatments are targeting brain tumour cells.
  • Attaining an appreciation of the processes involved in setting up a clinical trial, how patients can access, online tools for communicating current trials in Australia, and the future of clinical trials for brain tumour.
  • A frank discussion on some of the day to day challenges of living with a brain tumour or caring for someone with a brain tumour, including some practical strategies for coping with fatigue, pain, poor sleep, challenging behaviours, and some interesting discussion around neuroplasticity.

What the delegates said:

“Q & A very useful for practical help.” “We are not alone!”

“Hopeful future, rehab ideas, update on current studies and who with.”

Many thanks to Susan Pitt (Chair BTAA) for leading on the summit and to Cure Brain Cancer Foundation for sponsoring our international guest speaker, Dr Martin van den Bent.