About this event

  • Date and time Tue 20 Apr 2021 from 6:00pm to 8:00pm
  • Location Online
  • Organised by Medicine and Me

Jointly organised with Behçet’s UK, this meeting will give you an understanding of what it is like to live with Behçet’s from people living with the condition.

Behçet’s is a chronic condition causing unpredictable outbreaks of inflammation. It is considered a form of vasculitis, particularly affecting blood vessels, including arteries and veins. Inflammation can affect the whole system, with symptoms presenting anywhere in the body that has a blood supply, from the brain to the feet. There are estimated to be around 2,500 Behçet’s patients in the UK, while it is more common in the Middle East and Asia.

We bring together patients and leading experts, including the Clinical Directors of the three National Behçet’s Centres of Excellence, who will discuss their experiences and current approaches to care of Behçet's patients, non-pharmacological strategies to manage areas of associated current unmet needs, such as fatigue, pain and headaches, and examine approaches to managing patient expectations in a very rare disease.

Topics will include:

  • Success in managing Behçet’s - where we are now
  • Managing Behçet’s at Centres of Excellence in NHS England; what works and what doesn't, as well as the patient journey and outcomes within the devolved nations
  • Current challenges and unmet needs
  • Strategic issues as a result of unknown aetiology, condition rarity, heterogeneity, diverse progression in condition and treatment, identification of patients and biospecimens from multiple data sources, and harnessing comprehensive data in sufficient numbers

Registration for this webinar will close 2 hours prior to the start time. You will receive the webinar link 2 hours before the meeting. Late registrations will not be accepted. 

This webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place. 

Join in the conversation online #RSMLive
Follow us on Twitter: @RoySocMed 

About Medicine and Me

Medicine and Me meetings aim to provide an outline of current best practice and future updates of important conditions and to give direct voice to patients and their carers and enable them to discuss their concerns and reflections on the impact of diagnosis, investigation and management. Physicians, surgeons and indeed all healthcare professionals, continue to learn from and be inspired to greater efforts to improve care by hearing directly from patients.

We would like to thank our anonymous donor for their generous support enabling this platform for patient focused charities and free access to the Medicine and Me series

Tickets

Standard pricing available until 20 April 2021.

Member

RSM Member RSM Trainee RSM Student
£0.00 £0.00 £0.00

Non - Member

Non - Member Trainee Student Patient / Carer / Relative
£0.00 £0.00 £0.00 £0.00

Key speakers

Professor Dorian Haskard

Professor of Cardiovascular Medicine and Rheumatology, Imperial College and President, International Society for Behçet’s Disease

Speaker's biography

Professor Dorian Haskard obtained his first degree in physiology at the University of Oxford and then moved to the Middlesex Hospital Medical School for clinical training. He developed his interest in vascular inflammation as a Fellow with Dr Morris Ziff at UT Southwestern Medical School in Dallas from 1984-1986.  In 1987 he was awarded a Wellcome Trust Senior Research Fellowship to develop his own laboratory at the UMDS, Guy’s Hospital.

 

He joined the Royal Postgraduate Medical School at Hammersmith Hospital as Senior Lecturer in the Department of Medicine in 1990. In October 1995 he was appointed to a Personal Chair in Rheumatology and to the British Heart Foundation (BHF) Sir John McMichael Chair of Cardiovascular Medicine, which he occupied until 2016.

 

He was elected as a Fellow of the Academy of Medical Sciences in 2001. He has held a number of senior administrative positions at Imperial College London, including Head of the Section of Vascular Science and Head of the Division of Cardiovascular Clinical Science within the National Heart and Lung Institute, and Head of Immunology and Inflammation within the Department of Medicine. 

 

He currently convenes the Imperial College Network of Excellence in Vascular Science and serves as a College Consul for the Faculty of Medicine. His research is focused on understanding the biological basis of atherosclerosis and vascular inflammation. He has a long-standing interest in Behçet’s Disease and is currently President of the International Society for Behçet’s Disease. 

Dr Rohan Deva Situnayake MSc FRCP

Consultant Rheumatologist, Honorary Senior Clinical Lecturer, University of Birmingham and Clinical Lead and Director, Birmingham National Centre of Excellence for Behcet’s, Sandwell and West Birmingham Hospital NHS Trust

Speaker's biography

Dr Rohan D Situnayake MBChB (Birm) MSc Warwick FRCP is a consultant rheumatologist, with previous leadership positions including roles as Deputy and Medical Director for the Sandwell and West Birmingham NHS Trust and is currently Clinical Lead and Director Birmingham National Centre of Excellence for Behçets Disease from 2013 to the present. He has leadership expertise in clinical innovation and transformation and remains an Honorary Senior Clinical Lecturer University of Birmingham Academic Department of Rheumatology. 

 

In his clinical role he is a consultant rheumatologist practising in general rheumatology but with a specific interest in inflammatory arthritis, connective tissue disease and the impact of race/genetics on disease expression/outcome having been at the Trust since 1990.  He also runs a variety of clinics for patients with connective tissue disease (including systemic lupus erythematosus, scleroderma and overlap syndromes), osteoporosis and fibromyalgia. 

 

As a Medical Director he has contributed towards the planning of a new hospital, reconfiguration of hospital services particularly with respect to medical staffing and implementation of effective systems for clinical governance, job planning and appraisal. These skills have been applied to create a ‘one-stop, multi-disciplinary solution shop’ approach to the diagnosis and management of Behcet’s. He has ongoing research interests in the epidemiology and clinical phenotypes of Behcet’s and clinical trials of biological treatment

Professor Robert J Moots

Director, Liverpool Centre of Excellence for Behçet’s Syndrome, Liverpool University Hospitals NHS Foundation Trust and Edge Hill University

Speaker's biography

Robert is a clinical academic rheumatologist. Qualifying in Medicine in London, he earned his PhD at Oxford, moved to Harvard to continue his research and returned to the UK to establish a new academic rheumatology group in Liverpool.

 

He recently moved his academic affiliation to Edge Hill University, the newest UK medical school in the UK, to help train doctors from less privileged backgrounds. Robert’s research focuses on inflammatory rheumatological and autoimmune diseases, from bench to bedside. He has published extensively and holds major national grants. His group is designated European Centre of Excellence for Rheumatology research. Robert advises the National Institute of Health and Care Excellence, is Past Editor of Rheumatology and lectures extensively internationally on his work.

 

Clinical service is a crucial part of his role. Robert is Director of the Liverpool Centre of Excellence for Behçet’s syndrome, leading national trials evaluating optimal therapy for this condition, as well as caring for patients. He has extensive experience in managing hard-to-treat rheumatological diseases and in delivering therapy with both standard and targeted drugs. He also has a special interest in helping lead the development of rheumatology in Sub-Saharan Africa.

Mr Tony Thornburn

Chair, Behçet's UK

Speaker's biography

Tony Thornburn spent 35-years in the Armed Forces, subsequently invited to lecture in Systems Engineering at Cranfield University (Shrivenham) (2006 – 2016), having gained his MSc and MIET (2005), and then appointed chair of Behçet's UK in 2017.

 

Commissioned from the Royal Military Academy, Sandhurst (1971) into the Devonshire and Dorset Regiment (now The Rifles) he reached the rank of Lieutenant Colonel which included command of 4 D and D, a Territorial Army battalion.  A graduate of the Joint Services Defence Course, Greenwich (1992) he qualified as a PRINCE2 Practitioner (2004), a member of the International Council of Systems Engineering (INCOSE) and APM Group. He was awarded an MBE in 1984 and an OBE in 2004. A Fellow of both the Chartered Management Institute and Institute of Leadership and Management, he remains a Visiting Fellow, Cranfield University.

 

Tony’s career spans such diverse topics as formulating MoD policy, research, acquisition, trials and teaching in the areas of Intelligence and Security, Electronic Warfare and Airborne Surveillance, to purchasing boots and socks for the Infantry, upgrades to the Warrior Armoured Fighting Vehicle and SA80 A2 personal weapon system, and running a Systems Engineering Module at AWE, Aldermaston.  A qualified Jungle and Winter Warfare Instructor he spent two years teaching in the US Army Infantry Centre, Fort Benning, as British Exchange Officer (1979-1980). He was Chairman of the Military Laser Safety Committee (Army), Infantry Nordic Skiing, co-authored a revised AC/225 D14 NATO Handbook for Small Arms and Ammunition Acquisition, and supported the development and introduction of a formalised Human Factors policy in the Defence Procurement Agency (now DE&S).

 

His attention is now focused on Patient Registry, Natural History studies, and the rare disease and genome space. He is an Associate Member of The Royal Society of Medicine, British Society for Rheumatology and International Society for Behçet's Disease.

Agenda

View the programme here

Welcome

Baroness Ritchie of Downpatrick, Patron, Behçet's UK

Introduction

Professor Humphrey Scott, Dean, Royal Society of Medicine

Patient vignettes

A selection of patient journeys

Backdrop to Behçet's challenge – historical context, overview of condition

Dr Deva Situnayake, Clinical Director, Behcet’s National Centre of Excellence, Birmingham

International perspective - including a summary of COVID-19 experience

Professor Dorian Haskard, Professor of Cardiovascular Medicine and Rheumatology, Imperial College London and President, International Society for Behçet's Disease and
Professor Farida Fortune, Head of Department, Queen Mary University of London, Clinical and Diagnostic Oral Sciences, Institute of Dentistry

Patient vignettes

Two further patient journeys

‘UK’ Response - Behçet's Centres of Excellence (NHS England) ‘the good, the bad and the ugly’

Professor Robert Moots, Clinical Director, Behcet’s National Centre of Excellence, Liverpool

Comfort break

Patient journeys

Su Morris and Rachael Humphreys

Unmet need focussing on fatigue, pain, headaches: Q&A medical panel discussion

Including consideration on how to improve patient outcomes in Devolved Nations

Chair: Tony Thornburn, Chair, Behçet's UK

Panellists:
 - Professor Robert Moots
 - Dr Deva Situnayake
 - Professor Farida Fortune
 - Professor Dorian Haskard
  - Dr Adnan Al-Araji, Consultant Neurologist, Royal Stoke University Hospital
- Dr Claire Pain, Consultant in Paediatric Rheumatology, Alder Hey Children's NHS Foundation Trust
 - Dr Stephen Higgins, Principal Clinical Psychologist, ‎Barts Health NHS Trust

Closing remarks
Close of meeting

Location

Online

Disclaimer: All views expressed in this webinar are of the speakers themselves and not of the RSM nor the speaker's organisations. 

Special rates for difficult times
The RSM wishes to offer healthcare professionals continued learning opportunities during the coronavirus pandemic. The RSM’s weekly COVID-19 Series webinars remain free of charge, while there will be small charges to register for other online education. These fees will enable the RSM to continue its programme of activities and will apply during the course of the pandemic.

Registration for this webinar will close 2 hours prior to the start time. You will receive the webinar link 2 hours before the meeting. Late registrations will not be accepted.

All webinars will be available for registered delegates 30 days after on Zoom. The link will be sent 24 hours after the webinar takes place. 

This webinar will be recorded and stored by the Royal Society of Medicine and may be distributed in future on various internet channels. 

Man searching computer

Join the RSM and get unlimited digital learning and e-resources access

The RSM has an extensive digital learning and online e-resources platform. As a member you'll enjoy unlimited digital learning any time you need and access to e-journals, e-books and 6 huge medical databases to support your clinical decision-making and research.

Our e-resources are updated continuously to ensure you receive the cutting edge knowledge you need. 

 

Become a member