New research aims to unlock life-extending support for people with brain tumours

People with brain tumours across Yorkshire could soon benefit from improved access to life-extending support, thanks to a new study funded by Yorkshire Cancer Research.  

Led by experts at the University of Leeds and delivered at Leeds Teaching Hospitals NHS Trust, the BE SPeCiAL (Brain tumours: Enhancing Supportive and Palliative Care in patients And Loved ones) study will focus on addressing inequalities that mean people with brain tumours are less likely to be referred to, or access, supportive and palliative care services compared to people with other cancer types.

The study will benefit patients and carers from across the region who are receiving treatment and care at the specialist brain tumour service at St James’ University Hospital, Leeds.  

Research shows that physical activity, timely access to palliative care and support for carers can help people with brain tumours live better, for longer.  

But despite international recognition of the importance of supportive and palliative care for people with brain tumours, access remains limited.  

Dr Florien Boele, Associate Professor of Medical Psychology at the University of Leeds said: “People with brain tumours have limited treatment options and are less likely to survive than those with many other types of cancer.  

“They often face challenges such as memory loss, seizures, personality changes and other debilitating symptoms, yet many struggle to access the help they need, especially those living in rural areas or without a carer. 

A recent survey of more than 100 neuro-oncology healthcare professionals across 23 countries revealed widespread barriers to accessing this support, including staff shortages, long waiting lists, and a lack of understanding of the role these services play.  

As a result, many people’s support needs are met informally by family carers, who themselves report high levels of unmet needs and poor wellbeing. This gap in care contributes to poor survival, with many patients unable to complete their treatment.  

The Leeds research team - a collaboration of healthcare and academic experts from the University of Leeds and Leeds Teaching Hospitals NHS Trust - will aim to set an international example of how holistic care can be provided to people with brain tumours by designing, testing and evaluating three evidence-based programmes: physical activity, early palliative care and carer support.

Physical activity is known to provide multiple benefits for people with cancer, including improved fitness, quality of life and mental wellbeing, together with reduced fatigue.  

A landmark clinical trial called ENABLE-III has previously shown a 15% survival difference after one year for people with cancer who have early access to palliative care, when compared to those whose care is delayed.  

Previous studies by the research team in Leeds have also demonstrated that when carers feel in control of their situation, people with brain tumours are more likely to live longer. Providing carers with a support programme can help carers feel more in control.

If successfully rolled out across Yorkshire, hundreds of people with brain tumours living across Yorkshire and their carers could benefit from the improved support developed through the new five-year research study. 

Leeds Teaching Hospitals Trust has a specialist, multi-disciplinary brain tumour service. The Trust was recently designated a centre of excellence by the Tessa Jowell Brain Cancer Mission.