On Monday 21^st May 2018, healthcare professionals, patients and caregivers gathered at The Grand Central Hotel, Glasgow, for a brain tumour symposium where a broad range of speakers gave an overview of current treatments, support services and rehabilitation strategies for those living with a brain tumour.

What made the day special was the honesty with which healthcare professionals discussed the challenges of the clinical research agenda, the areas in which more research is needed and how that research could happen. 

The day was a collaborative event between The Beatson Cancer Charity, brainstrust and Brain Tumour Research, celebrating a synergy between these three dynamic charities, all focused on improving clinical outcomes as a matter of urgency.

Helen Bulbeck, Director of services and policy at brainstrust and Katie Sheen, Research Manager at Brain Tumour Research, welcomed everyone, and Consultant Neurologist Dr Robin Grant opened the day with a highly informative overview of the Clinical Research Agenda.

Shockingly, only 3-5% of brain tumour patients living in the UK are enrolled in clinical trials, and Robin called for this to increase to 10% within the next 10 years. He outlined the structure and strategy behind increasing the number of UK based clinical trials, including the vital role of the James Lind Alliance and the National Cancer Research Institute (NCRI), of which Brain Tumour Research is one of only 19 Partner Charities. It is clear that there is much work to be done, but also that much can be achieved if we continue to increase funding and enable collaborations needed for such vital initiatives.

Prof Anthony Chalmers, from the University of Glasgow, spoke about radiotherapy and drug combination therapies that offer hope. The introduction of radiotherapy doubled life expectancy when it was first introduced. Understanding more about how radiotherapy-induced DNA damage affects tumour growth and how cells set about repairing such damage and influencing those pathways using new or repurposed drugs, the aim is to then increase the effectiveness of this combined treatment approach. 

Graham Souter, CEO of the Beatson Cancer Charity, shared how his Glasgow based charity is providing significant funding and services to enhance the experience, treatment, outcomes and wellbeing of current and former cancer patients and their families.

Dr Gerry Thompson spoke in support of increasing levels of research into improving imaging techniques and technology. The lack of clarity on scans is clearly a huge issue for patients on a daily basis, with so many treatment decisions being decided by information gleaned from the interpretation of these images.

Better imaging could potentially provide fascinating insights and allow access to new levels of understanding in neuro-oncology research. The National Cancer Research Institute is busy enabling ways in which multi-centre collaborations can be organised to begin to move this vital area of research forwards.

Proton Beam Therapy has gained a huge amount of interest in the press, however it is not the only answer for difficult to treat brain tumours according to Dr Adrian Crellin, Consultant Clinical Oncologist in Leeds and NHS England National Clinical Lead on Proton Beam Therapy NHS England. He clarified the benefits of Proton Beam Therapy -
it avoids the spillover of radiation to brain tissue outside the focus of the treatment area, something that is particularly important for the still developing brains of children and teenagers, where it can have a very positive impact on reducing side effects. However, in terms of actually treating the target area, proton beam therapy has so far shown no benefit over standard (photon) radiotherapy, unless the radiation dose can be increased.

The quality of surgery is still absolutely crucial to the overall success of post-surgical radiotherapy, hence Dr Crellin’s insistence that proton beam therapy should not be considered in isolation. The opening of proton beam therapy centres in Manchester and London offers important opportunities for more research to build the evidence base and provide clearer clinical guidelines for the future.

The next topic to be discussed, with Dr Stefan Nowicki summarising that with numerous immunotherapies being explored, there is no evidence yet that any are effective in treating primary brain tumours. The answer may lie in a combination of immunotherapies, possibly delivered alongside radiotherapy, and there are interesting research studies underway around the globe to explore this theory.

The afternoon of the symposium shifted focus firmly onto the patient experience. Dr Alasdair Rooney demonstrated how behaviour and personality changes can have more than one cause, with depression being a particularly multi-faceted condition that tends to be under-diagnosed in the brain tumour community. He provided a strong case as to why more psychiatric support is needed for brain tumour patients, particularly in the form of clinical trials to identify the prevalence of depression and the most effective forms of support.

Physiotherapist Sarah Humphries and Occupational Therapist Judith Rennie from the Beatson West of Scotland Cancer Centre provided moving case studies that demonstrated how effective these services can be to help patients recover after surgery in particular. Neuro-rehabilitation is yet another under-resourced but highly valuable service that is always worth requesting in a treatment pathway, and again clinical trials should pave the way for greater access to such services throughout the UK.

A brain tumour experience is obviously something that includes all of those around the patient. Dr Florien Boele from University of Leeds gave a highly informative overview of the state of current research into the importance of support for family caregivers, but as the audience agreed, this is something so obviously beneficial that clinical trials shouldn’t be needed to provide a strong case for them to be offered as a matter of routine?

Continuing the theme of the need for a strong evidence base, Joshua Pencheon of Public Health England gave us an overview of the importance of data and the complexity of patient confidentiality. A new Get Data Out project has just been launched by brainstrust for more information about how you can get involved in making data more available for research, and discover how you can utilise their new online tool to access the statistics that you need to help us campaign for a brighter future for everyone whose lives have been touched by a brain tumour.

Finally, patient and caregiver Michael O’Donnell gave a moving and at times amusing account of his own brain tumour experience, and how it has inspired him to reach out to help others.  It was a very appropriate end to a day that provided inspiration, practical ideas and plenty of opportunities to form friendships across borders.

We intend to hold a second 2018 UK Brain Tumour Symposium in England later this year. If you’d like to attend, please email us to pre-register your interest, and to discover more about the campaigning and research work here at Brain Tumour Research.

Download presentations from the event:

• Big Data - Its Role in Brain Tumours - Helen Bulbeck
• Radiotherapy-drug combinations for glioblastoma - Anthony Chalmers
• Brain Cancer Data - Analysis and Interpration - Josh Pencheon
• Clinical Priorities & Clinical Research Agenda - Dr Robin Grant
• Support For Family Caregivers - Dr Florien Boele

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