Our clinical advisors As a charity, we are fortunate to enjoy good relationships with clinicians up and down the country. In September 2019, we sought to enrich and deepen our clinical relationships with the foundation of a new Clinical Advisory Panel (CAP), chaired by Dr Jeremy Shearman, Consultant Gastroenterologist. Our Clinical Advisory Panel meets quarterly, to consider areas of common interest and concern between people with genetic haemochromatosis and the NHS. The CAP represent a diverse and expert group of clinicians, covering the full range of clinical specialities involved in haemochromatosis care. This collaborative approach has already yielded a series of new “CAP approved” leaflets and materials, including a “guide to talking about GH with family & friends” and “Venesection Best Practice Guide for Nurses & Healthcare Practitioners”. Look out for our publications marked "CAP Reviewed & Approved", which have been rigorously reviewed to ensure medical accuracy, clinical effectiveness and helpful information for people with genetic haemochromatosis. Our clinical advisors include Dr Jeremy Shearman Consultant Gastroenterologist, South Warwickshire NHS Foundation Trust Chair of CAP Dr Jeremy Shearman is the Chair for the CAP. He is a gastroenterologist and hepatologist and has been a Consultant at Warwick Hospital since 2000. He has long and broad experience in assessing and managing gastrointestinal symptoms and complaints including reflux and other functional gastrointestinal disorders (such as IBS). He has a particular interest in liver disease and is an expert in the clinical management of haemochromatosis. His initial interest in the clinical management of the condition led him to undertaking a period of laboratory research culminating in a DPhil thesis on the molecular genetics of haemochromatosis. His main interests in the condition are patient education and quality of clinical care. Dr Shearman has worked closely with Haemochromatosis UK over the years, and has acted as a speaker at patient conferences. He has also been key in speaking to the media about the condition, raising public awareness of haemochromatosis. Dr Susan Hancock Fellow of the Royal College of General Practitioners Dr Susan Hancock received an MB BS from University College London in 1980 and has gone on to receive qualifications from the Royal College of Paediatrics and Child Health, the Royal College of Obstetrics and Gynaecologists, and the Royal College of General Practitioners. Dr Hancock is a practicing General Practitioner and post graduate medical educator for the North West Deanery Post Graduate Department of General Practice for over 20 years in the role of GP tutor for Blackburn and Course organiser for East Lancs Training scheme. She started at UCLAN Medical School as a Problem based Learner facilitator Sept 2015 at the beginning of the Medical School. Dr Hancock is now responsible for facilitating Professionalism, Ethics, Portfolio Based Learning and Communication skills for year one MB BS. Dr Patrick Kiely PhD, FRCP Consultant Rheumatologist, St George’s University Hospitals NHS Foundation Trust At St George’s, Dr Kiely runs special interest clinics for patients with rheumatoid arthritis, vasculitis, myositis and haemochromatosis arthropathy. He was a member of the NICE guideline development group for rheumatoid arthritis. He has served on several British Society for Rheumatology committees and is currently an Associate editor for Rheumatology. His research interests include the fields of rheumatoid arthritis outcomes, biologic optimisation, myositis, ILD and haemochromatosis arthropathy. Dr Kiely was a co-founder of the Haemochromatosis Arthropathy Research Initiative (HARI), with rheumatologists from France, Germany, Australia and Austria. HARI has produced patient information materials on how to diagnose the condition, management of symptoms (including pain) and bone health. In 2018 HARI was accepted by the European League against Rheumatism (EULAR) as a formal study group and current work of the group is the development of a systematic literature review as the first step to development of classification criteria for haemochromatosis arthropathy. “I am very pleased to work with this fantastic patient society that does so much to support those with Haemochromatosis. The arthritis is a huge challenge for many and together with HUK we hope to improve this situation” – Dr Patrick Kiely Dr Roseanna Brady Health Psychologist in NHS and private clinical practice Dr Roseanna Brady CPsychol, BSc MA MSc DPsych MBPsS Assoc RSM, sat on the Board of Trustees at Haemochromatosis UK from December 2018 – August 2019. She is also an adviser on the All Party Parliamentary Group for Haemochromatosis. Roseanna was diagnosed with GH in 2016 and receives quarterly maintenance venesections at her local hospital. Roseanna works as a practitioner health psychologist helping people with long-term physical health conditions including chronic pain and IBS. She also works with senior clinicians in hospitals to improve multi-disciplinary working, manage work-related stress, and she teaches advanced communication skills for medical settings. Roseanna works as a psychology consultant to digital health companies and other healthcare providers. She is a chartered member of the British Psychological Society and an Associate Member of the Royal Society of Medicine. “It’s exciting that the CAP is multidisciplinary, including clinicians and researchers from medicine, epidemiology, nursing, and psychology. I hope to contribute from a health psychology perspective on responses to diagnosis, treatment, positive self-management, and helping people with GH to navigate the NHS.” – Dr Roseanna Brady Martin Johnson RN, MSc, PhD. Emeritus Professor in Nursing, University of Salford After a varied clinical and academic nursing career, since 2001 Martin Johnson has been Professor in Nursing at the University of Salford and pursues his interests in health research, nursing history and nursing ethics. With over 75 journal publications, his book Nursing Power and Social Judgement (Ashgate) examines the context in which nurses and other health professionals make personal judgements which may affect care. From 2003 to 2010 he was Editor in Chief of Nurse Education Today and has been a member of two research quality assessment sub-panels (Allied Health, Dentistry, Nursing and Pharmacy, RAE 2008 and REF 2014). A previous president (2013-2018), Martin is currently a vice-president of the Manchester Royal Infirmary Nurses' Fellowship. Martin is a member of Haemochromatosis UK and regularly volunteers on The Haemochromatosis Helpline. He has also acted as an advisor for the Venesection Best Practice Guidelines for nurses." “As a person with genetic haemochromatosis with a nursing background I look forward to working with and learning from this very expert Clinical Advisory Group. I am particularly keen to identify which of the many symptoms which people experience and cause such concern are direct consequences of iron overload and how to relieve them.” - Professor Martin Johnson Dr Bill Griffiths FRCP Consultant Hepatologist, Cambridge Universities Hospitals NHS Foundation Trust Dr Bill Griffiths is a Consultant Hepatologist at Addenbrooke’s Hospital, a well renowned liver transplant unit. He served for 10 years on the British Association Study of Liver (BASL) education committee, is the lead for the BASL UK Wilson’s disease special interest group and is the National Lead for overseeing hepatology training within the UK. Dr Griffiths’ special interest is adult metabolic liver disease and research area is mainly haemochromatosis for which he is widely renowned as an expert on the condition. He has written several reviews and book chapters on haemochromatosis and lectured extensively. He published a seminal paper in 2010 on ferroportin disease and was on the BSH UK guideline authorship for genetic haemochromatosis and raised serum ferritin. In 2018 he was one of the lead authors on the HUK report: Living with the Impact of Iron Overload. Looking forward to see “what we can do to improve management for haemochromatosis across the UK” – Dr Bill Griffiths Professor David Melzer Epidemiologist, University of Exeter Professor David Melzer is currently a Professor of Epidemiology and Public Health at the University of Exeter Medical School and holds a professorship at the University of Connecticut. He concentrates on research on genetic and conventional factors influencing how people age. Professor Melzer has received a Harkness Fellowship in 1998, spent at the Guralnik laboratory at the US National Institute on Aging. He was formerly Director of the Epidemiology for Policy Group, in the Department of Public Health and Primary Care, University of Cambridge. He leads UK Medical Research Council projects analysing data from the UK Biobank study, a genetics cohort of 500,000 adults aged 40 to 70 from across England, Wales and Scotland. Professor Melzer and colleagues reported on the health problems associated with the haemochromatosis HFE mutations in the Biobank. The results from Professor Melzer’s work have attracted international attention in the media and in health policy circles. Professor Edward (Ted) Fitzsimons Consultant Haematologist and Honorary Clinical Associate Professor, University of Glasgow Medical School Professor Fitzsimons is a well-respected clinician and researcher who has worked closely with Haemochromatosis UK, and has acted as a speaker at several HUK meetings and most recently at the HUK conference 2019 and keynote speaker to deliver the Fernau Lecture at the HUK Venesection Study Day 2019. He was lead author of the new British Society for Haematology (BSH) clinical guidelines for the treatment of iron overload and is a medical adviser to the All Party Parliamentary Group for Genetic Haemochromatosis. In 2015 Professor Fitzsimons designed and worked on a study with a team of doctors and scientists which researched and developed a hospital laboratory pathway to improve the diagnosis of genetic haemochromatosis in primary care. The research, which was originally published in the journal of Clinical Pathology, was also incorporated into the new BSH Guidelines which was published in the British Journal of Haematology in 2018. Over the years Professor Fitzsimons has spoken to the media as a leading expert on haemochromatosis and through this has appeared on such shows as BBC Radio 4 Inside Health and BBC Radio Scotland. Professor Peter Hindmarsh Peter Hindmarsh is Professor of Paediatric Endocrinology at University College London and Consultant in Paediatric Endocrinology and Diabetes at University College London Hospitals and Great Ormond Street Hospital for Children. He is currently Divisional Clinical Director for Paediatrics at University College London Hospitals.