Urgent need to address variations in brain cancer care and research, major UK report finds
A report into UK brain cancer services provides a unique roadmap for new approaches to research and care for one of the deadliest cancers, treatment for which has failed to progress for three decades.
For children and people under 40, brain cancer is the biggest cancer killer – a devastating fact that makes understanding and addressing variations in care and research so crucial.
As a founding member and major funder of the UK’s Tessa Jowell Brain Cancer Mission (TJBCM), Minderoo Foundation is committed to understanding the molecular drivers of brain cancer, and improving treatment options and outcomes for patients.
The TJBCM acts as a convening body for researchers, clinicians, philanthropy, and patient advocates to collaborate and facilitate a national strategy for brain cancer care in the UK.
On its fifth anniversary, the TJBCM published a new report revealing insights collected in 2020-22 from 28 of the 30 National Health Service (NHS) brain cancer treatment centres in the UK through the Tessa Jowell Centres of Excellence designation programme.
Highlighting disparities in the design, quality and extent of the treatment and care pathways across the UK, the TJBCM’s NHS Brain Cancer Healthcare and Research: Does It Matter Where You Are Treated? report presents the most comprehensive review of NHS brain cancer services ever undertaken.
In all hospitals reviewed, treatment was delivered according to internationally recognised standards by a motivated team, but there was notable variability in access to genomic testing of tumour samples, participation in clinical trials and the extent of nurse and allied health-led services – all of which have the potential to impact patient experience and outcomes.
The data collected have the potential to play a key role in shaping brain cancer health policy and will underpin future coordinated efforts by the TJBCM, UK treatment centres, charities and commissioning groups to address the identified variation and challenges.
The TJBCM aims to work towards equitable and excellent care, irrespective of a patient’s postcode.
Jess Mills, TJBCM co-founder and daughter of Baroness Tessa Jowell, who died from brain cancer in 2018, said the report’s findings “confirm the need for the brain cancer field and NHS policymakers to tackle challenges in services and level up the care of brain cancer patients across the UK”.
“Our Tessa Jowell Centres of Excellence harness the extraordinary humanity, passion and ambition of the frontline clinicians we work with in every hospital in the UK who have a shared purpose and vision to change the course of this unspeakable disease,” said Ms Mills.
“This report holds something completely unique in the UK – the details of the real current picture of NHS brain cancer services, but most excitingly, the potential picture of the future, where, as my Mum dreamed, the very best and latest science will be available to all.”
Ms Mills said a shining example of this was the work of the Minderoo Precision Brain Tumour Programme, which is integrating personalised medicine – where genomic information about a person’s brain tumour is used to diagnose and plan targeted treatment and inform research initiatives – into routine NHS clinical care.
“The Minderoo Precision Brain Tumour Programme is radically rethinking the approach to complex brain cancers like glioblastoma – with the singular objective of making them non-lethal for the next generation,” said Aileen Boyd-Squires, Head of Personalised Cancer Care for Minderoo Foundation’s Collaborate Against Cancer initiative.
The report makes three recommendations for the UK brain tumour community:
- Share examples of innovation and excellence nationally, so more hospitals can benefit from the models and expertise developed by the best experts in the country;
- Empower hospitals to address their unique issues and local challenges; and
- Collaborate nationally to overcome the most difficult challenges that affect all hospitals.
Established by Andrew and Nicola Forrest in 2001, we are a modern philanthropic organisation seeking to break down barriers, innovate and drive positive, lasting change. Minderoo Foundation is proudly Australian, with key initiatives spanning from ocean research and ending slavery, to collaboration in cancer and community projects.
