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GNC researcher Professor Brian Neville has passed away

News: Dec 14, 2016

The world-leading researcher and clinician in the field of childhood epilepsy, Professor Brian Neville, has passed away on 14th December 2016.

Brian Neville was MD, PhD and Professor emeritus in Paediatric Neurology at the Institute of Child Health, London, United Kingdom. From 2012 until his death he has acted as a most inspiring Visiting Professor at the Gillberg Neuropsychiatry Centre.

He was the first Professor of Paediatric Neurology in the UK appointed in 1989, and developed the unit at Great Ormond Street Hospital, London, to become the largest combined clinical and academic department in the UK, with collaborative links across Africa and India. He was also key to the development of the epilepsy surgery programme. He was appointed to the first Prince of Wales's Chair of Epilepsy in 2004, with a vision to considerably expand the academic research between University College London, Great Ormond Street Hospital and Young Epilepsy, which is a national charity that supports the 112,000 children and young people under 25 with epilepsy in the UK. He was stepping aside from his post as Prince of Wales's Chair of Epilepsy only to continue with research in 2007. The Prince of Wales's Chair was then succeeded by Professor Helen Cross, one of Professor Neville’s disciples.

His research interests included the early onset epilepsies, with a focus on mechanisms involved in the comorbidities of cognitive and behaviour impairment, and interventions available to minimise these. He was a principal driver in highlighting the possible extent of problems encountered by these children in education, and was developing research to determine the true extent of the problem as well as the possible role of intervention in the community. Epidemiological studies included work in Africa and the UK on status epilepticus and epilepsy generally. Febrile seizures remain an important part of the work, not least in the last several years of his life in collaboration with Gothenburg colleagues.

In 2009 The Neville Childhood Epilepsy centre, named after Professor Brian Neville, was opened at Lingfield. The development on the National Centre for Young People with Epilepsy’s campus at Lingfield, Surrey, is significant as it is the first purposebuilt childhood epilepsy centre for assessment, treatment and research in the UK and is the only specialist facility of its kind. The centre is designed to be an international resource for paediatric epilepsy.

In 2011 Professor Neville gave the first Queen Silvia lecture at Gothenburg University, a speech titled ”Febrile seizures – a neurodevelopmental disorder?” when HRH Queen Silvia officially inaugurated the GNC at a ceremony in the Wallenberg hall in Gothenburg, Sweden.

Professor Neville has written over 250 peer-reviewed papers and many book chapters. He made many highly appreciated visits at the GNC in Gothenburg, where he contributed with his impressive knowledge and true commitment to his own and other patients and to research into ESSENCE. For all of his many friends and colleagues at the GNC (both in Sweden and overseas) his passing means a great loss.

Professor Brian George Richard Neville 1939-2016


As the first Chair of Paediatric Neurology in the UK, and subsequently the first Chair of Childhood Epilepsy Brian Neville made a significant contribution to the understanding and care of neurological disease in childhood around the world.

Brian qualified in medicine from Guys Hospital Medical School, and trained in neurology at Great Ormond Street as well as the National Hospital for Neurology and Neurosurgery, UCLH. He was initially consultant in pediatric neurology at Guys Hospital where he was Director of the Newcomen Centre, developing a firm interest in cerebral palsy and epilepsy. He long realized that research was key to moving forward in clinical practice, recognizing that the main questions that needed to be addressed arose from the patients themselves. His initial collaborations were with Kings College Hospital, However, in 1989 Brian was appointed to the first UK Chair of Paediatric Neurology at University College London, Institute of Child Health and Great Ormond Street Hospital. His vision was a unit that encompassed all aspects of paediatric neurology, from acute to chronic illness, with research embedded in clinical practice. He developed both the clinical and academic units to one of the largest in Europe. He specifically developed neurodisability services, firmly believing in the model of multidisciplinary team working. He additionally had witnessed what could be achieved through epilepsy surgery through his collaboration with Kings, but felt children required a specific type of service utilizing newly available MRI for a predominantly noninvasive programme, and also recognizing the service had to be embedded in a complex epilepsy evaluation programme. The programme he started at Great Ormond Street Hospital is now one of the largest clinical units in the world. Recognising that children required continuation of services into adulthood, he also established links with the epilepsy programme at the National Hospital for Neurology and Neurosurgery, UCLH, and created one of the first transition clinics for teenagers with complex epilepsy.

Brian long recognized the potential of an institution such as St Piers, Lingfield, a school for children with epilepsy when his involvement started in the 1980’s, realizing the potential of partnership with the NHS, and the possible reach of such expertise if made available. Over the years he was key to the development of the organization, initially as a charity, and subsequently as a medical and research resource. He campaigned and led fund raising for the creation of a chair in childhood epilepsy, establishing links with the Prince of Wales who gave his name to the chair, and a position for which he was the first incumbent 2004-2007. He also was a major driver for the creation of the medical and research centre that now bears his name.

Brian’s work was at the heart of many issues where the secondary effects of the epilepsies can affect a young person. The fundamental basis to his vision for the chair was the underlying mechanisms and secondary effects of the epilepsies and how intervention could improve outcomes. He also valued the relative contribution of different organisations in the research effort. It was at Young Epilepsy (then St Piers) he led the pioneering work into the use of buccal midazolam as rescue medication for prolonged seizures, now integrated into NICE guidelines. He led further work into the understanding of the effects of infantile spasms, optimizing intervention in Landau Kleffner syndrome, the epidemiology of status epilepticus, and the rate of neurocognitive and neurobehavioural abnormalities in children with epilepsy in schools. He also led on establishing a European network for the study of Alternating Hemiplegia that now continues as a wider international effort. During his career he published 3 books, 45 chapters and more than 270 peer reviewed publications. He created links across the community, UCL GOS – Institute of Child Health, Great Ormond Street Hospital, Young Epilepsy and ultimately the UCLH Institute of Neurology and Neurosurgery which would allow evaluation and intervention across a patient’s entire age range. He also valued the role of the parent organisations and undertook an enormous amount of work over the years with Contact a Family. He acted as medical advisor to several condition specific support groups, including as Executive Secretary of the Medical Education and Information Unit of the Spastics Society 1978-1992 (now Scope).

Brian long recognized the need to encourage and train junior colleagues so the specialty could grow. As coordinator of postgraduate training for North London, UK and Europe, he was able to develop a training programme which allowed appropriate trainees (more than half at GOSH) to enrol for PhD’s and develop into the present generation of clinical academics. He wrote the training programmes for Paediatric Neurology for Europe and the UK with the integration of neurodisability and child psychiatry, and established a European Syllabus for paediatric neurology. In all he supervised 15 higher degree (PhD or MD) students and many more visiting fellows from around the world. Brian was an outstanding mentor who always found the balance between getting the research project done and allowing his mentee to develop their own ideas and direction. This had the wonderful effect of giving breadth to both the research programmes and clinical practice. He also pursued collaborative work with colleagues in countries with limited resources. Notably links were established and longstanding with Kilifi, Kenya; Dhaka, Bangladesh and Chandigargh, India, enabling those countries to develop their own excellent paediatric neurology systems.

Brian was instrumental in the establishment of the British Paediatric Neurology Association serving on the council both as Secretary (1980-1983) and President (1986-1989) and Chair of the Training Subcommittee 1993-1999.Brian was one of the founding members of the European Paediatric Neurology Society and was subsequently elected to the board. He founded the European Academy of Childhood Disability, chairman for 12 years and also the European Society for movement analysis in children, chairman for 10 years. He was on the editorial board of Developmental Medicine and Child Neurology for 15 years (1977-1992) and negotiated its becoming the Journal of the BPNA. On retirement Brian was made an honorary member of the European Paediatric Neurology Society, awarded a Lifetime Achievement award from the ILAE UK chapter and an honorary doctorate from University of Gothenburg.

Brian’s legacy is colossal and his work will continue to shape the field of neurology for generations to come. His legacy remains in the many paediatric neurologists, paediatricians, therapists, children and families around the world who will be eternally grateful for his insights. At the heart of all he did, he was an extremely caring man who always put the child and family at the centre of all activity. We, Young Epilepsy, are immensely proud to have counted him as one of our own and he will be greatly missed.


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