The Medical Advisory Board

Dr Philip Bull

Lead Medical Advisor.

Consultant Rheumatologist

Honorary Senior Lecturer, KCH Medical School.

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I joined in 2014, having just retired from my full-time role as an NHS Rheumatologist following 35 years of service. During my NHS years, I had developed an interest in Hypermobility through my contact with physiotherapists who had a particular interest in this area.

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It had always been clear to me that there was much more to hypermobility than bendy joints although I was puzzled by the fact that my rheumatological colleagues were not particularly interested in this fascinating area of medicine.

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For myself, it is rewarding to know something about an area of medicine which has eluded the mainstream syllabus and to become one of the country’s group of specialists and enthusiasts who now support the HMSA as Medical Advisors. Our aim is to help move hypermobility syndromes from misunderstood from to mainstream!

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What was clear from the start was that I had joined a Charity which was supported by a wonderful group of enthusiastic specialists, all wanting to help educate on a voluntary basis. This was a mutually supportive environment. I found I didn’t have to look far for help, both from my professional colleagues and the HMSA itself.

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I have developed a real interest in Mindfulness and Mindful Self compassion and have talked widely on these skills, to Medical students, GP’s and Colleagues as well as at the Ehlers Danlos Society Bruges and Edinburgh conferences.

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In 2018, I was invited to join the HMSA as Trustee and Lead Medical advisor, taking over from Alan Hakim who has continued to support the HMSA as medical adviser.

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The role of the MAB is to advise on treatment and management of hypermobility syndromes, research and evidence, to respond to clinical questions from the HMSA Board, to support educational events as speakers and to support the HMSA educational model.

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The HMSA education model is a national blueprint for developing knowledge within existing resources, managed by the Professional Education Team.

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I am currently also working with the British Society for Rheumatology as Chair of the Hypermobility special interest group to progress the educational model.

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I am delighted to have the following colleagues on board with the HMSA and if you are not already familiar, here is some information about each of the advisers, in alphabetical order:

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Professor Qasim Aziz, Consultant Gastroenterlogist.

 

Professor Aziz’s clinical interests are in Functional Gastrointestinal Disorders e.g. Irritable Bowel Syndrome, Functional Dyspepsia , abdominal pain, gastrointestinal motility disorders and gastrointestinal manifestations of systemic disease e.g. diabetes, neurological disorders and connective tissue disorders like scleroderma and Ehlers-Danlos Syndrome.

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As a neurogastroenterologist, Qasim specialises in diseases of the gut that affect its nervous system, muscles and connective tissue. He also specialises in gut symptoms that occur due to abnormal communication between the brain and the gut such as in stress. The patients he sees most commonly are those with complex unexplained gastrointestinal disorders. He works in a multidisciplinary way with pain specialists, dieticians and psychologists.

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Qasim is is now Professor of Neurogastroenterology at Barts and The London School of Medicine and Dentistry at Queen Mary, University of London since 2006 and is the director of the world-renowned Wingate Institute of Neurogastroenterology.

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Julie Barber, Alexander Technique Teacher.

 

Julie qualified as an Alexander Teacher in 1993 at the Constructive Teaching Centre London. She is a member of the Society of Alexander Technique Teachers (STAT) and has taught in a variety of settings including the BBC, professional development programmes and drama schools. She currently teaches privately in North London, and also assists with the training of Alexander Technique teachers. Many of her students came because of her special interest in HSD, which began after her daughter’s diagnosis in 2011. She has worked with the HMSA, organised workshops and published articles on HSD for Alexander teachers both here and abroad, and in 2019 co-presented (with colleague Carolyn Nicholls) the Alexander Memorial Lecture ‘Only Connect - Working with Hypermobility’ to STAT members.

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The Alexander Technique is an effective self-management tool that teaches how to live with less tension and more ease, in movement and at rest. While essentially practical and problem-solving it’s also subtle and thoughtful. For more info see Dr Bull’s ‘Introduction to the Alexander Technique’, HMSA Journal Spring 2015, (available online) or STAT at https://alexandertechnique.co.uk/

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Dr Helen Cohen, Consultant Rheumatologist

 

Helen is a Consultant in Rheumatology and Chronic Pain at the Royal National Orthopaedic Hospital, Stanmore, Middlesex, UK. Dr Cohen graduated from the University of Wales College of Medicine. She has a special interest in the management and treatment of chronic pain, and specifically in Ehlers-Danlos syndrome (EDS) / hypermobility spectrum disorders (HSD), and Complex Regional Pain Syndrome (CRPS). She leads the CRPS and hypermobility rehabilitation programs at Stanmore.

One of Helen’s main research interests is in understanding how brain mechanisms contribute to severe chronic pain syndromes. Her clinical interests include general rheumatology, hypermobility, fibromyalgia, and CRPS among other chronic, difficult-to-explain pain syndromes.

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She has presented nationally and internationally on CRPS, hypermobility and chronic pain, and published articles in peer-reviewed journals. Helen leads the EDsoc consortium on pain.

She is a keen hiker/mountaineer and martial arts enthusiast.

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Dr Jessica Eccles, Clinical Lecturer in psychiatry at Brighton and Sussex medical School.

 

 

Jessica is a clinical academic liaison psychiatrist. She is an honorary consultant in Sussex Partnership NHS Foundation Trust. Her main areas of expertise are brain- body interactions, and she is particularly interested in how variants of connective tissue (as manifest by hypermobility) are related to symptoms such as anxiety, pain and fatigue, dysautonomia and neurodevelopmental conditions such as Autism and ADHD. She holds a number of prestigious grants in this field. She uses a wide variety of techniques including brain imaging and autonomic function testing.

 

Her clinical work is in adult neurodevelopmental conditions such as Autism and ADHD and Immunopsychiatry. She has a number of popular videos on YouTube and has given interviews to BBC Radio. Jessica talks about her most recent publications in this issue.

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She is a keen photographer.

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Dr Nick Gall, Consultant cardiologist.

 

Nick is a Consultant Cardiologist specialising in electrophysiology based at King’s College Hospital, part of King’s Health Partners. He is also an Honorary Senior Lecturer at King’s College London. Over the last seventeen years his interest in syncope has developed significantly now with a National referral clinic for complex cases; he is also a medical adviser to STARS and Patron of POTS-UK. With neurological colleagues at King’s he has developed the Neurocardiology department specialising in the management of syncope where collaboration between Cardiology, Neurology and Psychiatry is vital to the diagnosis and treatment, with a particular focus on autonomic conditions such as POTS.

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Professor Rodney Grahame, Consultant Rheumatologist.

 

Rodney is well known by all for putting hypermobility on the map.

He worked as consultant rheumatologist at Guy’s Hospital and University College London Trust and former paediatric rheumatologist Gt. Ormond Street Hospital for Children. Rodney was past president of the British Society for Rheumatology and was awarded CBE for services to Rheumatology and the Disability Living Allowance Advisory Board 1998.

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Rodney has been a continual adviser for the HMSA and we are indebted to him for his long-term support.

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Dr Alan Hakim, Consultant Rheumatologist

 

Alan is a Rheumatologist and Physician in adult medicine with a specialist interest in heritable disorders of connective tissue. He is based privately at the Wellington Hospital, London.

He trained in General Medicine at Addenbrookes in Cambridge and then in Rheumatology at University College London Hospitals, and was an Arthritis Research Clinical Fellow at St Thomas’ Hospital, London before becoming a consultant at Whipps Cross Hospital and Barts Health NHS Trust through to 2015.

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He has considerable experience at Director level in hospital management and clinical leadership, and was a Secondary Care Non-Executive Board member in NHS Clinical Commissioning in London for five years until 2018.

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Alan was lead medical adviser and a Trustee to the HMSA until 2018 and remains an important member of our medical advisory board. He currently supports the Ehlers Danlos Society as Chief Operating Officer and continues in research and education having written many articles, chapters, books, and research papers, and established the EDS ECHO program and conference series.

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Dr Hanadi Kazkaz, Consultant Rheumatologist.

 

Hanadi is a Consultant Rheumatologist at University College London Hospitals (UCLH) NHS Foundation Trust with a special interest in Heritable Connective Tissue Conditions. She qualified from St. George’s Medical School, University of London in 1996.

 

Hanna worked alongside Prof. Rodney Grahame, at UCLH for five years and took over the management of the hypermobility service after his retirement in 2012. The service provides specialist assessment and rehabilitation for adults with Heritable Connective Tissue Conditions.

 

The service at UCH is a national centre of expertise and has very close links with other speciality including neuro-vascular medicine, neuro-urology, neuro-gastroenterology, gynaecology and medical genetics.

 

Hanna is also an Honorary Senior Lecturer at University College London. She is involved in several clinical research projects in rheumatology. She is the Chief Medical Advisor for EDS Support UK .

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Jennie Seggie, Community based Physiotherapist.

 

Jennie has worked in East Kent as a physiotherapist for the last 20 years. She describes herself as a Paediatric Physiotherapist with a particular interest in supportive programmes for Children and Young People with symptoms of Chronic pain/Fatigue, including HSD. She works with the East Kent Community therapies team as well as the Evelina Unit at St Thomas Hospital. Jennie is involved in the AHEAD Coalition and with Dr Philip Bull in the recently formed “unconscious Bias Group”

 

 

Jane Simmonds, Physiotherapist

 

Jane is very committed to improving the lives of children and families with hypermobility related problems and has been helping the HMSA for the past 15 years through providing advice, teaching and undertaking research. She has 25 years of clinical experience, and combines her role as Physiotherapy Lead at the London Hypermobility Unit with my role as Associate Professor (Teaching) at Great Ormond Street Institute of Child Health, University College London. She loves teaching and has delivered numerous courses for health and exercise professionals on hypermobility. She is am also an active researcher and has written more than 60 research and clinical education publications including 10 book chapters. Research and clinical interests include hypermobility, Ehlers Danlos syndromes, bone health, dysautonomia, chronic fatigue and sports injuries. She is the Chair of the international Ehlers Danlos Syndrome Allied Health working group and a member of the Scientific and Medical Board of the Ehlers Danlos Society.

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Jo Southall, Independent Occupational Therapist.

 

Jo began her working career in the outdoor adventure industry but after a decline in health and diagnosis of Hypermobile EDS she began studying Occupational Therapy at the university of Northampton. After qualifying and being named Change Maker Student of the year in 2016 Jo set up her own independent practice working via video chat and social media. Jo's clinical work involves telehealth appointments with clients and their loved ones.

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She teaches a range of self-management Masterclasses and skills for complex long-term conditions, supports clients in their self-management journeys and advises on appropriate aids and adaptations.

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Jo is also a regular guest lecturer at various universities and leads webinars and training sessions both in the UK and abroad. Jo has recently become a a Practice Educator and is a long-term mentor and advocate for disabled healthcare professionals.

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Dr Brad Tinkle, Geneticist.

 

Brad has been a long standing supporter of the HMSA.

 

He attended medical school at Indiana University and completed a paediatric/clinical genetics residency at Cincinnati Children’s Hospital Medical Centre in the USA. He also completed a fellowship in clinical molecular genetics at CCHMC following residency.

He is now a clinical geneticist at Peyton Manning Children’s Hospital in Indianapolis, Indiana. Most recently, he was the Medical Director of Clinical Genetics at Advocate Children’s Hospital in Chicagoland. His clinics include Ehlers-Danlos (for adults, children, and families) and paediatric Down’s Syndrome.

 

He specializes in caring for individuals with heritable connective tissue disorders such as Ehlers-Danlos syndromes, Marfan syndrome, osteogenesis imperfecta, and achondroplasia among the many others.

 

Currently Brad is also a member of the medical advisory board for the Ehlers Danlos society