Dr Helen Bulbeck


Current Positions

Director of policy and services at brainstrust – the brain cancer people

Advisor to CEO of Cochrane


BA (Hons)

Short biography

Helen became immersed in cancer when her daughter was diagnosed with a brain tumour and she was diagnosed with head and neck cancer.  This changed her direction; she founded and now directs brainstrust, a national brain cancer charity.  As a consumer, a disseminator of information and the provider of a network and community, Helen focuses on achieving effective consumer involvement and creating a voice.  Consumers provide insights and expertise which improve the relevance of research; there is nothing as important as ensuring that the public voice is heard.  Her ethos of ‘none of us is as smart as all of us’ is a core value for her.

Research and Clinical Interests

Quality of life
Patient and caregiver experience
Shared decision making
Advanced disease
Evidence based medicine


BNOS patient experience
NCRI Brain Group
NCRI brain supportive and palliative care sub group
Cochrane consumer executive

Selected publications

Florien W Boele, Helen Bulbeck, Catherine Browne, Alasdair G Rooney, Paula Sherwood. Interventions to help support caregivers of people with a brain or spinal cord tumour.

Cochrane Database of Systematic Reviews 2017, Issue 3. Art. No.: CD012582. DOI: 10.1002/14651858.CD012582.

Day, J. et al Interventions to help support caregivers of people with a brain or spinal cord tumour.’ in Curr Treat Options Neurol (2016) 18:22

Day, J., Gillespie, D.C., Rooney, A.G., Boele, F., Bulbeck, H., Grant, R., Zenuis, K,. Neurocognitive Deficits and Neurocognitive Rehabilitation in Adult Brain Tumors in Current Treatment Options in Neurol (2016) 18: 22. https://doi.org/10.1007/s11940-016-0406-5

Bulbeck, H. Surviving a brain tumour diagnosis and living life well: the importance of patient-centred care in Neurorehabilitation in Neuro-Oncology, Soffieti, R. et al. Springer: 2019

Bulbeck, H. Communication skills: the patient as co-pilot in Management of adult glioma in nursing practice, Oberg, I. et al. Springer: 2019


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