Oxford University Hospitals NHS Foundation Trust

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The Steering Group 

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Patient / carer representatives

Pierre BernardPierre Bernard, Carer

I have two children who have been treated for scoliosis. My daughter wore a spinal brace from 8-14, and then had a spinal fusion aged 16. My son had infantile scoliosis which resolved when he was 18 months. I am a regional representative and trustee for Scoliosis Association UK.

Fraser Old, Carer

As a retired research engineer, I first became interested in orthopaedic research as a carer for my wife, who has a number of musculoskeletal complaints, including osteoarthritis of the knees, hands and shoulders.  In 2011 she had a major spinal operation to correct a lumbar scoliosis.  This was generally successful in relieving lumbar pain but has had other long-term side-effects. 

Stephanie ClarkStephanie Clark, Scoliosis Association UK

I am Chair of Trustees, Scoliosis Association (SA) UK and Council Member of British Scoliosis Research Foundation. I was a researcher into the causation of Scoliosis while at the Cardiothoracic Institute, Brompton Hospital with Dr Phillip Zorab, and was co-founder of SA UK with Ailse Harrison.

Claire CurleyClaire Curley, Scoliosis Association UK

I am the General Manager of the Scoliosis Association UK (SAUK) and the British Scoliosis Research Foundation (BSRF). As general manager of SAUK I am responsible for the provision of support for people with scoliosis and ensuring the service is responsive to and meets the needs of all people with scoliosis, professionals involved with the treatment of scoliosis, and people interested in scoliosis research. As general manager for BSRF I am responsible for coordinating the charity’s scoliosis research grants programme and managing the Zorab symposium, a leading scoliosis conference attracting worldwide experts in the field.

Camilla SeckinCamilla Seckin

I was diagnosed in 2009 with kyphoscoliosis. Although my 72 degree curvature was very visible, I did not suffer with a great deal of pre-op pain. My curve was, however, progressing and putting my internal organs in danger. In 2012, aged 25 years old, I had a T3-L2 spinal fusion and a multi-level costoplasty. After my surgery I wore a TSLO brace for four months. Since surgery, I have suffered with chronic pain and have great difficulty with sleeping. I have dealt with pain with ongoing physiotherapy, hydrotherapy and Pilates. Currently, I am the Co-Lead London Regional Representative for the Scoliosis Association UK Charity. I find supporting and advising members extremely rewarding.

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Clinical representatives

Jeremy FairbankJeremy Fairbank, Consultant Orthopaedic Spine Surgeon, Oxford

I trained as an orthopaedic surgeon after I had graduated from Cambridge University and St Thomas’ Hospital Medical School in London. I took an interest in the spine right from my first job. Later I spent 2 years as spinal fellow in Oswestry, where I learnt about Scoliosis from John O’Brien, an Australian surgeon who had trained in Hong Kong. This time was very influential on me as many experts in the spine visited from all over the world and I made many contacts. I became a consultant first in Birmingham and later in Oxford. I moved to Oxford so that I could specialise in the spine, and we have gradually built up an influential unit dealing with all forms of spinal disorders including many sorts of scoliosis. I am interested in the optimum management of scoliosis, its causes, and ways to help decision-making for patients and clinicians. In recent years I have become more focussed on young children, often wheelchair dependent, who can develop severe curves. With my anaesthetist, Richard Rogers we have looked to ways of minimising the impact of spinal surgery on these vulnerable people.

Andrew ClarkeAndrew Clarke, Consultant Orthopaedic Spine Surgeon, Royal Devon & Exeter

I qualified in 1999 from the London Hospital. My orthopaedic surgical training was undertaken on the South West training programme in the UK. My Fellowship training in complex spinal surgery was undertaken at the University Of Wales Hospital in Cardiff and also in Hong Kong. I took up consultancy at The Royal Devon and Exeter in 2010 where I am developing my clinical interest in paediatric and adult deformity correction.

Chris MorrisChris Morris, Senior Research Fellow in Child Health at the University of Exeter Medical School

I lead the Peninsula Cerebra Research Unit (PenCRU) focusing on childhood disability research. I led the JLA childhood disability research priority setting partnership. Previously, I was an orthotist, with experience in orthotic management of neuromuscular scoliosis

Dominique RothenfluhDominique Rothenfluh, Consultant Spine Surgeon, Oxford University Hospitals NHS Foundation Trust

I’m a consultant spinal surgeon with a special interest in deformity surgery, particularly adolescent idiopathic scoliosis and adult deformities. Improving the evidence base particularly for adult deformity surgery is a priority of the research programme that I am currently in the process of setting up.

Anne RichardsAnne Richards, Paediatric Physiotherapist, Oxford University Hospitals NHS Foundation Trust

I qualified as a Physiotherapist in Dublin and have been involved in the treatment of AIS and Adult Scoliosis since the early 1980's. My interest in the condition developed over many years working with patients and their families. Scoliosis treatment has long been associated with many challenges for this patient group, from Milwaukee Braces to full post-operative casts.

photo of Ros JeffersonRos Jefferson, former Consultant Neurodisability Paediatrician

I have had an interest in scoliosis since the mid-1980s when I was involved in the development of a computerized system for measuring the three-dimensional surface shape of the back. I am an Executive Board member for the Sheffield Distance Learning Paediatric Neurodisability MSc and regularly update the unit on cerebral palsy. I currently spend around 6 months of each year running the paediatric service in a mission hospital in the rural North Western Province of Zambia

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Partner representatives

Peter VirleyPeter Virley, British Scoliosis Research Foundation

I am secretary and treasurer of the British Scoliosis Research Foundation, with which I have been involved as a Board member since 2006. I have a degree in Natural Sciences from Jesus College Cambridge and worked in the international pharmaceutical industry up until my retirement in 2005.

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Additional expertise

Lizzie Holloway, Social Media Communications

Profile pending

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Support

Katherine CowanKatherine Cowan, JLA Advisor, Steering Group Chair

I am Senior Adviser to the JLA and have been a key contributor to the development of its methods and profile since 2008. I co-wrote and edited the original JLA Guidebook. I have chaired over 20 PSPs, and facilitated at more than 30 priority setting workshops, including for schizophrenia, childhood disability, palliative care, dementia, mesothelioma, spinal cord injury, and sight loss and vision. I am passionate about the JLA method and its potential to bring disparate and often seldom-heard groups together to influence the research agenda.

Sandra Regan, Patient involvement & JLA Project Manager, NIHR Oxford Biomedical Research Centre & Unit

I support a range of Priority Setting Partnerships (PSPs) on behalf of the NIHR Oxford Biomedical Research Centre (BRC) and Musculoskeletal Biomedical Research Unit (BRU). I was involved with the first BRU PSP on hip and knee replacement for osteoarthritis, and am currently working with 7 PSPs in the BRC and BRU.

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