The Steering Group comprises of leading researchers and healthcare professionals (spanning several disciplines including psychology, nursing and gastroenterology) and patients who are experts by experience. Meet our members below:
Professor Christine Norton (Chair)
Christine Norton RN MA PhD is Professor of Clinical Nursing Research at King’s College London. She was formerly Nurse Consultant (Bowel Control) at St Mark’s Hospital Harrow, and Professor of Gastrointestinal Nursing. She has an extensive research programme, including many studies on incontinence, fatigue and pain in Inflammatory Bowel Disease and over 100 published peer reviewed papers. She leads the NIHR funded programme grant on these symptoms in Inflammatory Bowel Disease.
Professor Peter Croft
I have been Professor of Primary Care Epidemiology at Keele since 1994, Emeritus from 2017. I worked previously as a General Practitioner in Newcastle-under-Lyme before training as an epidemiologist at the Medical Research Council's Environmental Epidemiology Unit in Southampton and at the then Arthritis Research Campaign's Epidemiology Research Unit in Manchester.
I have studied the causes, course, consequences, and treatment of chronic pain, low back pain, fibromyalgia and osteoarthritis, with an emphasis on studying data that links primary care and the general population. With colleagues at Keele and from the local NHS community, I have supported the development of multidisciplinary research teams at the Centre in Keele, and partnerships with local primary and secondary health services and with patients to carry out research into musculoskeletal conditions and chronic pain. I co-edited an Oxford University Press textbook on the epidemiology of chronic pain.
I am particularly interested in studying and resolving the apparent conflicts between medical diagnostic models of chronic pain (“if we find the underlying disease and treat it, the pain will go away”) and the idea of chronic pain as a condition in itself which influences, and is influenced by, general health, psychological, social and cultural components of life and which may need approaches to care and treatment not anchored to any specific disease.
Dr Michael Lee
I am a Lecturer in the Department of Medicine at University of Cambridge and an honorary NHS Consultant in Pain Medicine at Addenbrooke’s Hospital in Cambridge. My research focuses on how the nervous system contributes to persistent pain. I use psycho-metrics, sensory testing and neurophysiological recordings (EEG/FMRI) in individuals with extreme or unusually painful or painless phenotypes to help identify novel drug-gable targets via preclinical collaborations. I work in a multidisciplinary team to manage patients with relapsing or intractable pain despite optimal medical therapy, particularly when analgesic use is complex or challenging.
Dr Gill Holdsworth
I am a trustee of Crohn’s and Colitis UK, and chair the Research Strategy Funding Committee. In my professional life, I use my background in molecular/cell biology and drug discovery to lead the musculoskeletal research group within UCB NewMedicines, with the aim of bringing new medicines to patients with musculoskeletal conditions including osteoporosis, osteoarthritis and rare musculoskeletal diseases. I was diagnosed with ulcerative colitis in 2012.
Professor Ailsa Hart
Professor Ailsa Hart is Consultant Gastroenterologist, St Mark’s Hospital and Sub-Dean of St Mark’s Hospital Academic Institute. In 2016, she achieved academic promotion with Imperial College and is now Professor of Practice. Professor Ailsa Hart studied medicine at Oxford University and was awarded a First Class Honours Degree in 1992, and additional prizes for outstanding achievements. She achieved Membership of the Royal College of Physicians in 1998 and subsequently Fellowship of the Royal College of Physicians. She trained in Gastroenterology and General Internal Medicine in London and also received training at the Academic Medical Centre, Amsterdam. She achieved her PhD with Imperial College in 2005, funded by a Wellcome Trust Fellowship. She was appointed to the consultant staff of St Mark’s Hospital in 2008 and became a Clinical Senior Lecturer at Imperial College London, having been awarded a highly competitive Clinical Senior Lectureship by the Higher Education Funding Council for England. She subsequently achieved the title Professor of Practice with Imperial College in 2016. She has published 2 books, over 200 papers, reviews and book chapters & supervised/ co-supervised over 20 higher degree students and lectures widely nationally and internationally. She was Chair of the British Society of Gastroenterology Gut Microbiota for Health Group. She is currently on the Governing Board of the European Crohn’s and Colitis Organisation as Treasurer; has been a member of the Clinical Committee of the European Crohn’s and Colitis Organisation; is involved with writing the ulcerative colitis European Crohn’s and Colitis Organisation guidelines; is on the IBD Clinical Research Group Committee for the British Society of Gastroenterology; UK Patient and Public Involvement Lead for Gastroenterology; on the Research Committee for the Crohn’s and Colitis UK charity; collaborates widely across the UK particularly within the UK IBD Genetics Consortium; and is a member of the International Organisation for IBD (IOIBD). She is Associate Editor of the popular gastroenterology journal Alimentary Pharmacology and Therapeutics.
Dr Amanda C de C Williams
Amanda Williams, PhD CPsychol, is an academic and clinical psychologist at University College London, UK, and at the Pain Management Centre, University College London Hospitals. She also works as a research consultant for the International Centre for Health and Human Rights (ICHHR). She has been active in research and clinical work in pain for 30 years, with particular interests in evaluation of psychologically-based treatments for pain; in behavioural expression of pain and its interpretation by clinicians; in evolutionary understanding of pain and pain behaviour; and in pain from torture. Dr Williams has written over 200 papers and chapters, presents at national and international pain meetings, and is on the editorial boards of several major pain journals.
James Johnson (Lay member)
My journey with Inflammatory Bowel Disease began in 2001. When I was diagnosed with Crohn’s Disease by Dr (Prof) Mark McAlindon at Sheffield. My prior history involved severe stomach cramps and bowel spasms in 1989/90 during a period of high stress after a job move failure. I believe my GP’s at the time treated my symptoms as stress related and possibly IBS. I had an anal fissure around 1992 and around that time I started to experience general discomfort in the gut and from what I can recall this was treated more as acid reflux. Around 1994/95 I experienced several episodes of severe pain lasting over a day, again I recall this being linked to IBS. These painful episodes continued along with acid reflux and finally after I had seen my GP because I was experiencing aching in the back early in 2001 I was referred to a back specialist. After running routine blood tests I was then referred to gastro. Even then during the procedure Dr McAlindon, after finding ulcers during the gastroscopy thought he had established the reason for my symptoms but carried on with the colonoscopy which found the presence of inflammation.
I still experienced a severe pain episode a few months after diagnosis but gradually the extreme episodes of pain fell away. In 2005 I had an Ileum resection and in 2015 further duodenal surgery, including putting a loop in place, as well as the removal of gallstones. I was then diagnosed with Primary Sclerosing Cholangitis (PSC).
Over the years my Crohn’s symptoms have often shown up as pain related with fatigue following, not always diarrhoea present. I have often wondered why a short bout of pain can leave me so fatigued. Furthermore Crohn’s and the later diagnosis of PSC have had a major impact on my working life, I retired two years ago at age 63 and previously in 2009 I had to leave a job in accountancy private practice following a long period of chronic fatigue which I believe was linked to my IBD.
Professor Eva Szigethy
Eva M Szigethy, MD, PhD, is Professor of Psychiatry and Medicine, Director of Behavioral Health within the Chief Medical and Scientific Office and Director of the IBD Medical Home. Dr. Szigethy has been a NIMH funded researcher in mental health diagnoses and IBD for several decades. Recently, Dr. Szigethy has focused her clinical and research interests on designing integrated medical-psychiatric models of care for patients with IBD with focus on neurobiological manifestations such as anxiety, depression, pain and trauma. Within the IBD Total Care Program, the first IBD specific subspecialty medical home, patients have seamless access to the IBD team members, including an IBD-dedicated social worker, nurse practitioner, specialized dietitian, and supplemental care services aimed at improving quality of life. This targeted coordination of care has been shown to lead to better medical coordination, fewer hospital visits and an improved quality of life including reduced depression, pain and opioid use. In 2015, Dr. Szigethy was recognized for her innovation in her life-time work with patients with IBD by winning the prestigious Sherman Prize. Dr. Szigethy is the Principal Investigator of a recently awarded a $6.3 million PCORI contract to study how to design systems to manage chronic disease and will compare health technology with a team-based, high-touch intervention. UPMC has a coach-facilitated trans CBT digital platform targeting mood, pain, sleep and trauma. Dr. Szigethy has authored multiple papers, reviews and chapters on treating chronic pain with non-opioid behavioral and pharmacological strategies.
Professor Stephen McMahon
Stephen McMahon is Sherrington Professor of Physiology at King’s College London. He is a Fellow of the Academy of Medical Sciences. He trained with Prof PD Wall at University College London and since then has run his own research laboratory in London.
His major research interest is pain mechanisms. He has a long-standing interest in identifying pain mediators and studying their neurobiological actions. He has worked extensively on the role of NGF (neutralizing antibodies now in multiple phase III trials), ATP acting at P2X3 receptors (receptor antagonists now in multiple phase II and III trials). His current research is focused on neuro-immune interactions, particularly the neurobiology of chemokines, and the genetics and epigenetics of pain.
Professor McMahon currently directs the Wellcome Trust Pain Consortium, and prior to this, the London Pain Consortium, a collection of leading pain researchers working to better understand chronic pain mechanisms and improve treatments. He was academic lead on a EU-IMI consortium called Europain, a collaboration of scientists working in academia and industry, 2009-2015. He is also deputy Chair of the MRC’s Neuroscience and Mental Health Board.
He has published more than 300 research articles in scientific journals including, Nature, Nature Medicine, Nature Neuroscience, Cell, Neuron and the Journal of Neuroscience and has an H-index of 102 (https://scholar.google.co.uk/citations?user=Qz9HihUAAAAJ&hl=en)
Fran is an IBD Nurse Practitioner currently working at the Queen Elizabeth Hospital King's Lynn. Prior to this she worked for many years in Cambridge combining a clinical and research role within the IBD Unit at Addenbrooke's Hospital. She has worked with CCUK previously on the Advisory Board for the Lottery Funded 'Fatigue in IBD' project and now actively supports and promotes research into IBD alongside her clinical role at the QEH.