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Long Covid and PoTS A practical guide and new insights Speaker Bios Dr Nick Gall Consultant Cardiologist Dr Gall qualified in 1993 from Guy’s and St Thomas’, subsequently training in cardiology in South East Thames. He became a Consultant Cardiologist in 2004, based at King’s College Hospital, London. He is also an Honorary Senior Lecturer at King’s College, London. He is a Cardiologist with a special interest in arrhythmia investigation and treatment. He has a particular interest in dizzy spells, blackouts and collapses of uncertain cause, working closely with colleagues in neurology and ENT. His interest in this area has led on to an interest in autonomic problems and therefore the management of PoTS and IST (inappropriate sinus tachycardia).He is a medical advisor and patron of PoTS UK. Prof Lesley Kavi Chair PoTS UK Lesley has been a managing trustee of PoTS UK since 2011 and became chair in 2017. She obtained her medical degree at Glasgow University and worked as a GP for almost 30 years. She is the Royal College of GP’s Syncope clinical champion. In this role she developed a series of resources to help inform healthcare professionals about syncope and PoTS. She is Visiting Professor at Birmingham City University, where she helped to develop their Advanced Practice MSc. Lesley is a member of the NICE expert panel on long-term effects of COVID-19. She has written a number of journal papers on PoTS and syncope. Her goals include ensuring that all healthcare professionals recognise and know how to manage PoTS. Dr Toby Hillman Consultant in Respiratory and General Medicine Dr Toby Hillman is a consultant in respiratory and general (internal) medicine. He has a specialist interest in pleural disease, and is clinical lead for the UCLH Pleural Service. Dr Hillman trained in Nottingham, and completed his higher training on the North East Thames Respiratory Rotation. He has worked at UCLH as a consultant since 2013. Since May 2020 Dr Hillman has worked in the UCLH post-COVID clinic, providing care to patients with complications of COVID and ongoing symptoms of the post-COVID syndrome. Outside of his direct clinical practice, Dr Hillman has an interest in healthcare sustainability, and works with the Royal College of Physicians as a special advisor on health inequalities (sustainability). Dr Dan Sado Consultant Cardiologist Dr Sado is a Cardiology Consultant and leads the cardiac MRI service at King's College Hospital, a large teaching and academic centre. As well as general cardiology, he has particular interests in heart failure, heart imaging, heart disease in patients with cancer (cardio-oncology) and inherited heart diseases. He has won international, national, and regional prizes and awards for his ongoing research which spans the fields of his specialist interests in cardiology. Dr Sado is a national, regional, and local leader for cardiology education, working as training programme director for South Thames Cardiology trainees and sitting on British Cardiac Society, Royal Society of Medicine and the Nationalist Specialist Advisory Committee in Cardiology. He is frequently invited to lecture and chair sessions at national and international conferences and is leading on the redesign of the UK national heart failure training curriculum. The most important values his work with patients, research volunteers and colleagues are based on are integrity, honesty, openness, empathy, understanding and the desire to constantly improve cardiology practice. Using these and other skills, his overall aim is to strive to provide the highest possible quality of clinical care, research, teaching, leadership and management in healthcare. Mrs Anita Kiernan Development and Improvement Manager Anita Kiernan is a PoTS patient who lives in Manchester and currently works for the NHS as a Development and Improvement Manager in the mental health and learning disability commissioning team. She enjoyed a career as a Community Nurse in Salford before being redeployed to an office-based NHS role in 2008 due to a deterioration in her medical condition. Anita and her husband Eric happily became parents to Eva in 2009, which was also when Anita finally received a formal PoTS diagnosis after a 14 year journey. Having lived with postural hypotension, PoTS and reflex syncope symptoms since she was 16, including several years of collapsing 20-30 times a day, the long road of rehabilitation continues to this day...fortunately, though, she is much less likely to be found on the floor nowadays! Educational Psychologist Dr Sue Peters Sue has been an Educational Psychologist for 17 years after completing her initial training at Southampton University in 2004. She has worked in several Local Authorities; since 2015 as an Area Senior Educational Psychologist and completed a Doctorate in Educational Psychology at University College London in 2020. Prior to qualifying as an Educational Psychologist, Sue’s interest in psychology and knowledge of school systems were developed through her work as a primary school teacher, a teacher in a specialist school for ASD and an Assistant Educational Psychologist. She is passionate about using psychology to support the emotional health and wellbeing of young people and school staff by offering supervision, coaching, consultation and training. She is also interested in positive psychology, dynamic assessment and finding ways to listen to and elicit children’s views. In January 2021, Sue and her family contracted COVID-19. She has Long Covid herself and her teenage daughter has suffered daily debilitating Long Covid symptoms (POTS and ME/CFS) as a result. She is now working with the charity Long Covid Kids to raise awareness of Long Covid and to support school staff to understand Long Covid so that they can support the children and young people they work with within the classroom. She is also working to support the wellbeing of school staff themselves suffering with Long Covid. Dr Harsha Master GP Medical Lead Dr Harsha Master graduated from Imperial College, School of Medicine in 2003 and completed her GP training in 2008. Since then she worked as a salaried GP for 11 years. She now works as the GP Medical lead in the Long Covid Assessment and Rehabilitation pathway at Hertfordshire Community NHS Trust. This was set up early last year, as part of a multidisciplinary team in response to the COVID-19 pandemic and has evolved and adapted into a more integrated pathway in response to patient need. She has been involved in teaching on Long Covid, particularly at PCN target events to local GPs, and recently presented at the RCGP conference: Long Covid: the vital role of general Practice in managing a secondary epidemic of chronic disease. She is involved in research in Long Covid and co- authored Top Tips: Managing Long Covid in Guidelines in Practice February 2021. Dr Melissa Heightman Respiratory Physician and Clinical Lead. Dr Heightman is a respiratory and general physician with a background in integrated respiratory medicine and interstitial lung disease. She leads the Integrated Post COVID service at University College London Hospitals NHS Trust/ North Central London ICS which works with 4 community partners and GP leads to deliver post COVID rehabilitation. The service has reviewed over 4000 patients since May 2020. Dr Heightman was an expert adviser to NICE for the initial guideline re managing the effects of COVID-19 and in Sept 2021 was appointed as National Speciality Adviser to the NHSE Lond COVID program. She is a clinical lead for the STIMULATE- ICP research study investigating the role of diagnostics, medicines and digitally supported rehabilitation for Long COVID. She is clinical lead for the Respiratory Network in North Central London and is a member of the clinical leadership group with the London Clinical Respiratory Network. Dr Bethan Myers Consultant in Haemostasis, Thrombosis and Obstetric Haematology Having qualified in Cambridge and Cardiff, Dr Myers trained in haematology in the East Midlands, becoming a consultant in 2000. Although primarily a consultant in Haemostasis, Thrombosis and Obstetric Haematology, she has always had an interest in Mastocytosis, which over recent years has expanded to an interest in Mast Cell Disorders in general. Dr Myers has initiated and presented proteomics research in Mastocytosis, and established a mast cell disorder tertiary referral centre at Leicester, and is CI of an international study on MCAS. She is also an advisor to the Mast Cell Charity organisation in the UK. Dr Jessica Eccles Clinical Senior Lecturer Jessica Eccles trained in medicine at University of Cambridge and University of Oxford, completing a BA in The History and Philosophy of Science, sparking a keen interest in philosophy of mind and brain-body interactions, and since graduation from medical school has pursued a combined academic clinical path at Brighton and Sussex Medical School. As an MRC Clinical Research Training Fellow she completed her PhD in the relationship between joint hypermobility, autonomic dysfunction and psychiatric symptoms and following an NIHR Academic Clinical Lectureship is now a Clinical Senior Lecturer in the department of Neuroscience at BSMS. She holds an honorary clinical contract with Sussex Partnership NHS Foundation Trust where she works in theNeurodevelopmental Service. Alongside colleagues, she also set up the Immunopsychiatry service atSussex Partnership NHS Foundation Trust. Dr Charles Reilly Consultant Physiotherapist Dr Charles Reilly is a Consultant Physiotherapist in Chronic Respiratory Disease, King's College Hospital. Additionally, Dr Reilly is a Honorary Senior Clinical Lecturer for King's College London within the Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation. Dr Reilly’s clinical and academic expertise is in the pathophysiology and non - pharmacological treatment of breathlessness. Dr Rebecca Livingston Clinical Lead Physiotherapist Rebecca Livingston is the Clinical Lead Physiotherapist for the Post COVID service at the University College London Hospital (UCLH) in the UK. Established in May 2020, this was the UK's first Post COVID service. She has been appointed by NHS England and Improvement as the Post COVID specialty adviser for London, and co- chairs theAllied Health and Therapies Long Covid Networkfor London. Rebecca is part of the World Health Organisation guidance development group for Rehabilitation in Post COVID Condition, and contributed to the updated NHSE Post COVID Commissioning Guidance. During the peaks of the COVID-19 pandemic in the UK, Rebecca worked in critical care, including on an acute CPAP unit,and regularly engaged with national media toimprove wider understanding of both acute and Post COVID care. Rebecca also works treating people with breathing pattern disorder and chronic lung disease, and is the clinical lead for the Outpatient Respiratory Physiotherapy service at UCLH. Consultant Geriatrician /Reader Dr Claire Steves Claire is a Reader at King’s College London. She is also a Consultant Geriatrician at Guys and St Thomas’s NHS Foundation Trust as well as the Clinical Director of TwinsUK. Claire is interested in the interactions between physical and mental health in ageing. Her current research focuses on the relationship between the gut, urinary and salivary microbiome and conditions of ageing, including cognitive ageing, frailty and multi-morbidity. Claire also designed and led the ZOE COVID Study, a collaboration between KCL and ZOE Ltd, and she has consulted for ZOE. Claire graduated first class from Cambridge University in 1997. She joined King’s College London in 2009 with a Wellcome Clinical Research Fellowship and gained her PhD in 2014. Prof Valeria Iodice Clinical and Academic Lead - Autonomics Dr Valeria Iodice is a consultant in neurology and autonomic medicine and associate professor in neurology atUniversity CollegeLondon. Dr Iodice has been the clinical and academic lead of the autonomic unit at the National Hospital for Neurology and Neurosurgery, Queen Square, London since 2013. She has longstanding clinical and research interests in autonomic neurology, gained in three worldwide autonomic centres: Mayo Clinic, Rochester USA; Imperial College London and The National Hospital for Neurology and Neurosurgery, London, UK. Dr Iodice qualified at University Federico II, Medical College, Naples, Italy in 2003 and completed the residency in Neurology and Neurophysiology at the University Federico II, Naples, Italy in 2008. She was awarded a clinical research fellowship in autonomic medicine at Mayo Clinic Rochester Minnesota (USA) in 2007 where she began her research on the autonomic nervous system (ANS) at the Autonomic Translational Centre, Mayo Clinic. In 2009, she was awarded the first Sir Roger Bannister fellowship in autonomic disorders and was awarded with a PhD in neuroscience and autonomic neurology from Imperial College, London. A respected speaker, she has presented at national and International meetings. Dr Iodice has written several publications in major specialist journals that focus on the ANS in neurology and cardiovascular disorders and chapters in international textbooks of neurological and cardiovascular medicine. Dr Morwenna Opie-Moran Consultant Clinical Psychologist Morwenna is a Consultant Clinical Psychologist now practicing back in her native Cornwall at the Duchy Hospital, after working in a variety of London healthcare settings including the London Cardiovascular Clinic, Kings College Foundational NHS trust and the Nightingale Hospital. She has a special interest in maximising well-being in the context of compromised physical health. She has spoken and published widely on aspects of cardiological health, with particular expertise in the treatment of PoTS and syncope. Morwenna is a firm believer that mind and body are inseparable in their influence on disease, and both areas need to be considered to adequately meet patient’s needs in all healthcare settings; and indeed by us all in order to live optimally. She hopes to help ensure that the patient pathway for PoTs is improved by improving awareness, reducing psychological misattribution of symptoms, and advocating for specialist multi-disciplinary services and ongoing research into PoTS management. Dr Jane Simmonds Physiotherapist Advisor With more than 30 years of clinical experience and 22 years as a university based educator and researcher, Jane combines her academic role as Associate Professor and Co Director for Education at Great Ormond Street Institute of Child Health at University College London with clinical work at the Central Health, London Hypermobility Unit where she specialises in hypermobility related disorders, PoTS and Osteoporosis. Jane is an active researcher and is Chair of the EDS Society International Consortium Allied Health Professions working group and a member of the EDS Society Medical and Scientific Board. She is also an advisor to the HMSA, EDS Support UK and PoTS UK. Jane has authored more than 100 research and clinical education publications and webinars on hypermobility, Ehlers Danlos Syndromes and PoTS. Mrs Michaela Nuttall Cardiovascular Nurse Specialist Michaela, is a cardiovascular nurse specialist with a unique and varied experience across the NHS and beyond. She developed her passion for prevention 23 years ago and has worked within it ever since. In 2016 she left public health after working in the field for 16 years and now focuses on 3 main areas, as a Director for Smart Health Solutions, Associate in Nursing for C3 Collaborating for Health and Deputy National Lead for CVD Prevention at Public Health England. Often seen as the voice of reason, she is the Chair of HEART UK Health Care Committee and on both the Nurses and Guidelines & Information working parties of the British Hypertension Society, a variety of editorial boards and the Global Cardiovascular Nursing Leadership Forum. Being a Trustee at PoTS UK keeps her firmly rooted in the challenges patients face in living with life altering conditions. She set up the Parents of People with PoTS support group and organises the PoTS UK retreat for patients and carers. Other PoTS UK Trustees and Admin Team Miss Chloe Garner Chloe works in Operations Management at a FTSE 100 Wealth Management company and is currently studying part time with Ashridge Executive Education. In her free time, she loves being outdoors with her dog, Rupert. Chloe has been volunteering with PoTS UK since 2017, supporting with the organisation of PoTS patients’ days and retreats. Having been diagnosed with PoTS herself a number of years ago, she hopes to raise awareness of PoTS both in and outside of the healthcare community, as well as continuing the charity’s work to support patients and carers. Ms Lisa Bradford Lisa has worked in the financial risk and compliance field for the past 20 years for both Federal government, International Aid programmes in Africa and global financial institutions. Lisa has led regional teams on executing risk assessment, governance and financial management of globally prescribed projects to meet international standards. Lisa is passionate with implementing the charity’s agenda and increasing awareness to assist patient’s quality of life. Mrs Jo Mrs Denise Bullingham Chapman Charity Secretary Charity Administrator