The Patients’ Meeting Committee

AILSA BOSWORTH

Ailsa Bosworth is the Founder and Chief Executive of the National Rheumatoid Arthritis Society which she launched in 2001 following a 6-month battle to get Anti-TNF treatment. Ailsa has had sero-negative RA for some 30 years. Ailsa’s background is in business management and marketing.

In a relatively short time Ailsa and her team have established this award winning charity as the campaigning voice in the UK for people with Rheumatoid Arthritis (RA) and NRAS now employs 20 staff.

Ailsa contributes or has contributed to a number of committees and working parties such as NICE Technology Appraisals (since 2003), the ARMA Standards of Care and BSR guideline development groups, and was on the Guideline Development Group for the NICE RA Guidelines. She was on the Expert Panel advising the National Audit Office in respect of their report into RA Services published in July 2009. She is also the patient representative on the BSR Biologics Register Steering Committee and also the BSPAR Biologics Register for Juveniles. She was Joint Chair of the Rheumatology Futures Project Group which was responsible for commissioning the King’s Fund Report into RA and the subsequent inflammatory arthritis commissioning pathway which was launched on the DH website in July 2009.

She is also contributing to pan-european RA Standards for EUMUSC.net. The project will specifically identify the burden on individuals and society of musculoskeletal conditions across EU Member States; set standards of care for individuals and healthcare providers for people with osteoarthritis and rheumatoid arthritis; assess whether these standards are being achieved in countries across Europe; and help overcome the barriers to achieving these standards to enable the effective and equitable prevention and management of these condition in the Member States. 

MAARTEN DE WIT

Maarten de Wit (MA) has been active in organisations of patients with rheumatic diseases at local, national and international level for many years. From 2005 till 2009 he has been the European League Against Rheumatism (EULAR) Vice President representing people with arthritis/rheumatism in Europe. He is currently responsible for scientific research and international contacts within the Dutch Arthritis Patient League. His interest in research increased since 2002 when he participated in the sixth conference on Outcome Measurement in Rheumatology (OMERACT). In 2007 he founded Tools2Use, a non-profit association aiming to promote support, training and involvement of patient representatives in research and development initiatives. Since 2009 he is involved in a PhD study, mentored by prof. T. Abma (VU Medical Centre Amsterdam, Department of Medical Humanities) and prof. J. Kirwan (Bristol Royal Infirmary), evaluating effective methods of patient participation in rheumatology research. Maarten has experienced psoriatic arthritis for over 30 years and is successfully treated with anti-TNFα.

GEORGE D. KITAS

George Kitas MD, PhD, FRCP qualified suma qum laude from the Medical School of Athens in Greece in 1985. He pursued postgraduate doctoral studies in Birmingham, trained in medicine and rheumatology in several units in the UK and was appointed Consultant Rheumatologist at the Dudley Group of Hospitals NHS Foundation Trust (Teaching) in 1995, where he is Head of Rheumatology, Clinical Director of Ambulatory Medicine, Director of Research and Development and Deputy Associate Medical Director. He is Honorary Professor of Clinical Rheumatology at the Arthritis Research UK Epidemiology Unit - University of Manchester, Professor of Behavioural Rheumatology at the Faculty of Health and Life Sciences - University of Birmingham, and Professor of Rheumatology and Musculoskeletal Health at the Research Institute in Healthcare Sciences - University of Wolverhampton. He is editorial board member of 5 international journals, acts as expert reviewer for more than 30 international journals and research funding bodies, and is an expert evaluator in the quality assessment agencies for higher education and research of several governments. He leads the “Rheumatoid Arthritis Co-morbidity Research Group” and has over 200 peer-reviewed original publications and book chapters, and 200 published conference abstracts. He has several million pounds in current research grants from multiple sources, including the Medical Research Council, Arthritis Research UK, British Heart Foundation and the pharmaceutical industry. He is Chief Investigator of TRACE RA, thus far the largest multicentre prospective randomised controlled trial in Rheumatoid Arthritis in the world. Professor Kitas is founding member of the West Midlands Rheumatology Forum, the first multidisciplinary rheumatology congress in the UK, and of the Birmingham Arthritis Resource Centre, the only community-based resource centre for patient information and education on rheumatic diseases in Europe. He has been Chairman of the West Midlands Rheumatology Services and Training Committee, Regional Specialty Advisor of the Royal College of Physicians, member of the British Society for Rheumatology (BSR) Council, member and vice-chairman of the BSR Heberden Committee, and Associate International Director for European affairs of the Royal College of Physicians of London. He is convenor of the BSR Cardiovascular co-morbidity Special Interest Group and member of the European League against Rheumatism (EULAR) task force on cardiovascular risk management in rheumatic diseases.

MARJA KRUITHOF

Marja Kruithof has been chair of the NVLE, Dutch Patients Organization for Lupus, APS, Scleroderma and MCTD since 2006. This organization was founded in 1980 because at that time patients with a Connective Tissue Disease found that it was very difficult to get information about their diseases. Marja was diagnosed with a Connective Tissue Disease in 2004. Marja’s background is nursing and management (in hospitals). In recent years she became involved in the work of LUPUS EUROPE (LE) and last September she became Secretary of this Umbrella Organization.

From 2007 the NVLE has been involved in organizing a yearly patients congress; in the odd years for Scleroderma and MCTD, in the even years for Lupus and APS. In 2008 the NVLE Award presented for the first time. This Award is an encouragement for young doctors who are researching in the field of the diseases represented by the NVLE. This research must show an immediate benefit for patients, for instance on quality of life. Marja is a member of the jury for the NVLE Award. She is also a member of the board of the NVLE fund. The money from this fund is used, for instance, to help young doctors financially when they have to give a presentation abroad on their research into Lupus or one of the other diseases represented and also for general research.

During the past year Marja has learned a lot about LUPUS EUROPE, among other things about the different health care situation within Europe. In 2010 she represented LE at the European Patients’ Forum and she strongly believes in the task of LE Uniting People With Lupus Throughout Europe. Within in her work for LUPUS EUROPE as in her work for the Dutch NVLE Marja feels that providing information for patients, listening to their stories and helping them to be heard is at the centre of the work for a patients’organization.

PETER NORTON

Peter has lived with lupus since 1975 when his wife, Yvonne, was diagnosed and has extensive knowledge of the illness, its variations, symptoms and treatments.

Peter works alongside Yvonne to support lupus patients, having been Treasurer of the West Midlands Lupus Group since its formation in 1979 and holding the position of Treasurer of LUPUS EUROPE (formerly ELEF) since 2002.

As a qualified Chartered Accountant, Peter has valuable experience in both the Private and Public sector and produces accounts for Trustees and the Charities Commission

Peter has joined Yvonne as co-ordinator of the first UK Lupus Open-Access Clinic since it was formed six years ago, as a Patient Support representative for West Midlands Area Hospitals Rheumatology Peer Review Committee and Investigator with the European Lupus Nephritis Research Project. He was also a member of the World Lupus Day Steering Committee and is an

Assessor for the LUPUS UK Centre of Excellence project.

Over the years, as well as supporting Yvonne with her illness, Peter has helped support other lupus patients and promote lupus almost on a daily basis. As a trained telephone Contact, he regularly provides information and is the necessary ‘listening ear’ both for diagnosed patients and those seeking diagnosis.

Travelling thousands of miles each year to attend Meetings and Conferences, both in the UK and abroad, Peter gives his time and knowledge to, hopefully, ease the burden that lupus places on patients and to further the lupus cause.

YVONNE NORTON

Since been diagnosed in 1975, Yvonne has worked to support lupus patients throughout the UK and Europe. She established the West Midlands Lupus Group in 1979 and still remains Chair and has been Vice-Chair of LUPUS UK since its formation in 1990. For the past three years she has been Chair of LUPUS EUROPE. Yvonne is standing for re-election to both organisations this coming September.

During 2000, Yvonne was instrumental in setting up the All Party Parliamentary Group for Lupus at Westminster and regularly attends meetings in the House of Commons having support for the projects she instigates from both MPs and Peers.

Six years ago, along with her husband, Peter, and with support from Prof George Kitas and colleagues within the Dudley Group of Hospitals, Yvonne set up the first UK Lupus Open-Access Clinic, a project which other Regional Lupus Groups within LUPUS UK are endeavouring to replicate. 

Constantly organising fund raising events, Yvonne has been central to over £1,000,000.00 being raised within the West Midlands Lupus Group to help fund research/patient care projects.

Amongst the projects suggested by Yvonne, and taken up by LUPUS UK, are funding for Specialist Lupus Nurses and the establishment of LUPUS UK Centres of Excellence.

Yvonne works closely with the medical profession to organise meetings/conferences and to provide literature both for patients and medics. She is particularly proud of “Lupus – Diagnosis & Treatment”, a book aimed at educating GPs and Health Professionals on the many aspects of lupus.

As Chair of LUPUS EUROPE, Yvonne works to support national Lupus Groups throughout Europe and to help the voice of lupus patients be heard worldwide through World Lupus Day, an event she helped establish in 2004.

During 2007, Yvonne was thrilled to be honoured by the Queen when she received the MBE for Services to Healthcare.

DAVID G. SCOTT

David G I Scott was appointed Consultant Rheumatologist at the Norfolk & Norwich University Hospital NHS Foundation Trust in February 1988, he retired from his NHS post in July 2011 and is currently honorary consultant Rheumatologist.. He was Director of Research and Development for the Trust from 1996 to May 2006 and was made Honorary Professor to the UEA in 1998. He held the post of Divisional Clinical Director for Medicine in the Trust from May 2006 to July 2007 and was appointed Director of the Norfolk and Suffolk CLRN in August 2007. David graduated from Bristol in 1973 and undertook junior doctor training in Southampton, Bristol, Bath and Birmingham, completing an MD on systemic vasculitis in 1981. He was President of the British Society for Rheumatology (BSR) from 2002 to 2004 and Chair of the Joint Specialty Committee for Rheumatology, linking the BSR with the Royal College of Physicians (RCP) 2002-2006. He was elected to Council of the RCP in 2004 and significantly contributed to the RCP working party on Medical Professionalism. He was RCP Patient Involvement Officer from 2007-2011. Previous activities include Medical Secretary to the Arthritis Research Campaign (arc) and until recently the arc Scientific Co-ordinating Committee. He is chair of the arc Research and Academic Capacity Committee (2008– present) and is Medical Adviser to two charities; NRAS (now Chief Medical Adviser) and the Raynaud’s and Scleroderma Association. He has a long-standing interest in systemic vasculitis, and has written over 250 reviews/editorials and papers in total, including clinical aspects, epidemiology and outcome, and lectures nationally and internationally on this subject. Other research interests include epidemiology of rheumatoid arthritis (Norfolk Arthritis Register) and clinical, health economic and psychosocial aspects of inflammatory arthritis including their relevance to the introduction of anti-TNF alpha therapy.

PIET VAN RIEL

Professor Dr Piet van Riel is Head of the Department of Rheumatology at the University Medical Centre Nijmegen, The Netherlands.  After graduating in Medicine from the Catholic University of Nijmegen in 1978, Prof Dr van Riel trained in Internal Medicine at St Radboud Hospital, Nijmegen.  In 1983 he completed his PhD thesis and went on to receive rheumatology training at the Academic Hospital Nijmegen.

Prof Dr van Riel is an active member of many professional societies, including the Dutch Society of Rheumatology, of which he was Chairman from 2003 upto 2009, the American College of Rheumatology and the British Society of Rheumatology. From 1999 to 2003 he was Chairman of the EULAR Standing Committee for International Clinical Studies Including Therapeutic Trials.

Prof Dr van Riel’s research interests include clinical research in rheumatology, clinical pharmacology and clinimetrics.  He is on the editorial board of a number of journals, and has authored or co-authored several books and over 500 international publications with currently a h-index of 53.