MRC Centre for Neuromuscular Diseases
London, United Kingdom
Country
United Kingdom
Institution
UCL Institute of Neurology, National Hospital For Neurology and Neurosurgery, University College Hospitals London
Education summary
1980 BSc Hons Psychology (class 1) University College London
1985 MBBS University College London
1989 Diploma in Child Health Royal College of Physicians
1990 MRCP Royal College of Physicians (later FRCP and FRCPCH)
2009 MD (research degree) University of London
Career summary
I completed paediatric training in London teaching hospitals: UCH, Barts, Royal London, Evelina Children's Hospital and became a clinical lecturer in neuromuscular diseases at Guy's Hospital (covered both adult and paediatric).
2002-2010 Consultant in Neuromuscular diseases RJAH, Oswestry and Birmingham Children's Hospital, and Director Wolfson Centre for Neuromuscular Diseases (CIND)
2010-present Consultant Neurologist, National Hospital for Neurology and Neurosurgery (NHNN) and Great Ormond Street Hospital (retired from GOSH 2021)
2019 Honorary Professor of Neuromuscular Diseases, UCL Institute of Neurology
What is the personal or professional achievement you’re most proud of?
I am most proud of developing a successful business case to build the Neuromuscular Complex Care Centre (NMCCC) for adults at NHNN, which I have since led. The NMCCC co-ordinates all aspects of care including neuromuscular, respiratory, cardiology, gastroenterology, anaesthetics, clinical psychology, physiotherapy, occupational therapy, SALT and dietetic care during a short elective in-patient stay. Our ward is purpose built and adapted for even our most physically impaired patients. Prior to the NMCCC, we noticed a high non-attendance rate in outpatients due to the logistics of travelling and fatigue experienced by our patients. The NMCCC has become their second home and the staff their family. Our patients contact the NMCCC when they need advice and we will share management advice with other hospitals when our patients are acutely unwell. The NMCCC has been particularly successful in co-ordinating care for the most complex patients transitioning from paediatric care such as DMD, we now look after a very large number of DMD adults and the team have acquired a high level of expertise. I developed and lead the UK Adult North Star Network, which aims to improve adult DMD care across the UK and we have developed a national database and the first UK consensus guideline on the management of adult DMD.
Why did you first join the WMS?
I attended the first WMS conference in London and I have remained a member ever since. At the time I was a research fellow and neuromuscular disease did not really exist as a subspecialty of neurology. There were very few consultants and researchers in this area, however, I felt very much this was where my career should be and the WMS became my 'professional home' thereafter. I feel very privileged to have witnessed throughout my career many advances in the Neuromuscular world that have improved diagnosis, management and which have led to disease modifying therapies. I do not think these advances would have happened without the pivotal role of the WMS in bringing basic scientists and clinicians together and fostering education and collaboration.
What is your goal in joining the Executive Board?
I am particularly interested in improving transition for young people with NMDs which remains a complex and problematic area worldwide. The number of young people surviving with severe childhood onset muscle disease has risen sharply. However, services have not developed to meet the needs of these patients and commissioning/ insurance pathways are often non-existent. The WMS could play a pivotal role in advocating education and training programmes specifically to develop NMD specialists who bridge the gap between paediatric and adult services by working across both specialties. This occurs very successfully in other areas such a rheumatology, haematology and cystic fibrosis and something I have done throughout my career.
