A mother from Warwickshire has spoken of her profound grief following the death of her daughter, who passed away just seven weeks after her wedding, following a determined fight against a brain tumour.
A Daughter's Courageous Battle
Natalie, who was 31 years old, was first diagnosed with a brain tumour in 2017. Over the following four years, she endured intensive treatment in her fight against the illness. This included rounds of radiotherapy and chemotherapy, as well as multiple surgeries.
In a desperate search for further options, her family even arranged for her to travel to Germany for treatment, with each round costing a staggering £56,000. Despite this immense effort, Natalie tragically died in November 2021.
Her mother, Liz Paul, has now chosen to channel her heartbreak into supporting a crucial new project. She hopes it will prevent other families from facing the same arduous challenges she and her daughter experienced when trying to find potential new treatments.
Breaking Down Barriers to Clinical Trials
Liz is backing the launch of Access to Clinical Trials for Brain Tumours (ACT-BT), a new system designed to match UK patients with suitable clinical studies. The initiative has been co-created and funded by The Brain Tumour Charity and is hosted by the University of Leeds.
"Accessing clinical trials for Natalie was exceedingly difficult," Liz stated. "Even just finding out what they are, despite your best efforts – you're left trawling the internet for hours. You might find some trials, but then you have to work out if you are eligible. ACT-BT is a much-needed initiative for people with brain tumours."
She believes it will become a vital resource, providing a more equitable route for accessing brain tumour clinical trials for patients and their families across the country.
How the New ACT-BT System Will Work
The ACT-BT service is scheduled to be operational by late spring. It will allow hospital consultants to refer adults with primary brain tumours to a specialist panel via a simple online form.
Each case will be reviewed by a multi-disciplinary panel of 10 experts from across the UK, who will meet weekly. Every panel member is a lead researcher on a national study, enabling them to give precise, up-to-date advice on a trial's status and recruitment criteria.
Professor Susan Short, co-director of the Leeds Cancer Research Centre and the ACT-BT lead, explained the mission: "Our aim is to remove the barriers that stop patients taking part in clinical research. By improving access to trials, we can accelerate discovery and ensure that new treatments reach those who need them sooner."
The Brain Tumour Charity is funding the set-up and running costs for an initial eight-month pilot phase. Dr Michele Afif, the Charity's Chief Executive, emphasised the urgency: "Brain tumours remain the biggest cancer killer of people under 40. By enabling more patients across the UK to access brain tumour clinical trials, we hope to help scientists develop kinder, more effective treatments."
The project will also incorporate patient voices directly into its development. The charity brainstrust will oversee a Patient and Public Involvement and Engagement (PPIE) aspect, inviting up to 10 patients and caregivers to share perspectives at each stage.
Dr Helen Bulbeck, co-founder of brainstrust, said: "Patient voices must be at the heart of improving access to clinical trials. By involving patients and caregivers at every stage, we can create a system that truly understands and addresses their needs."
For Liz Paul, this new system represents a beacon of hope born from personal tragedy, aiming to make the path to potential treatments less daunting for others facing the same devastating diagnosis.
