The launch events held in Brain Tumour Awareness Month provided an opportunity for politicians and people directly affected to reflect on the changes needed to transform survival and quality of life and to consider what they could do as voters and elected representatives to make the change.
At the Scottish Parliament our host Cameron Buchanan MSP emphasised the importance of early diagnosis and awareness.
This was followed by a presentation from one of our funded researchers, Dr Paul Brennan at the University of Edinburgh, who touched on his adult pathway early diagnosis research and the importance of tissue collection, boldly stating, “Imagine if every patient was a research patient...we want to collect tissue samples from every person in Scotland with a brain tumour."
Finally Heather Dearie who has been living with a brain tumour since 2010 told of how early diagnosis might have changed everything for her and reduced her side-effects.
In Wales, host David Rees AM stated that each person diagnosed with a brain tumour in Wales deserved full support and should never stop fighting the corner. Pablo Goetz, a Consultant Neurosurgeon from the University Hospital of Wales, and James Powell, Consultant Oncologist at Velinder Cancer centre, spoke about the need to improve access to early phase clinical trials for neuro-oncology patients.
We also heard some moving testimonies from David Payne and Debbie Bryn who are both living with a brain tumour, and Debbie's sister Christine who is also her carer.
Finally, we launched our manifesto for Northern Ireland in the Assembly Buildings in Belfast last week. Maeve McLaughlin MLA highlighted how brain tumours reduce life expectancy by an average of 20 years, the highest of any cancer, and the urgency of tackling the unmet need of those personally affected.
We also heard a number of different perspectives from patients and carers affected by a brain tumour, who all talked about the challenges of navigating the healthcare system from the point of diagnosis to treatment and accessing follow-up support.