MEET THE TEAM
Long Covid SOS was established in June 2020 during the early months of the pandemic and is staffed entirely by volunteers with lived experience of Long Covid. We are now registered with the Charity Commission and our governance is provided by a board of trustees
We have played a major role in generating awareness of the condition through social media and press campaigning. We work closely with the NHS, RCGP, Dept for Health and Social Care, NICE, ONS, NIHR and the WHO and also collaborate with researchers in order to further our mission of Recognition, Research and Rehabilitation for people with Long Covid. Moving forward we aim to continue to be an active voice, providing an informed and lived experience perspective to national and international organisations as well as the research community
OUR TRUSTEES
Sarah Barley-McMullen
Chair
Sarah Barley-McMullen is a former University Diversity and Inclusion Lead and Senior Lecturer who retired in 2022 due to Long Covid. She is the founder of Be Longing for Change Consultancy, supporting charities and communities to embed meaningful inclusion and belonging.
Sarah now focuses on national and local advocacy. She is a volunteer member of NHS England’s LGBTQIA+ Sounding Board, as well as their People and Communities: Nursing Directorate, where she has contributed to the development of the 10-Year Quality Strategy, the Excellence Experience Framework, and the Future of Patient Feedback programme.
She is a Lived Experience Partner with the International Post Covid and Post Infectious Diseases Society (IPIC), and works with the Royal College of Anaesthetists to ensure Long Covid and other chronic, fluctuating conditions are reflected in clinical care and research.
Sarah has a firm belief that discussions about Long Covid should never happen without patient involvement. She recognises lived experience as a form of empirical knowledge - alongside clinical and research data - and advocates for it to be treated with equal value in shaping care and policy.
A Stonewall Role Model and founder of the award-winning Pride in Belper, Sarah was a 2024 national finalist in the Patient Experience Network Awards for Lived Experience Contributor of the Year.
Sarah lives in Derbyshire with her wife Helen and their cockapoo, Steve.
Caroline Stewart
Treasurer
Caroline is an experienced Chartered Accountant and Chartered Tax Adviser with broad experience working across a range of businesses, from major international consultancies as well as many years running her own company.
She is an experienced trustee and chair and has joined the board of Long Covid SOS to add her financial acumen as Treasurer.
Caroline values the difference that Long Covid SOS can make to the lives of people with Long Covid through information and advocacy.
Kim Horstmanshof
Deputy Chair & Trustee
Kim is a senior Knowledge Management expert who has experience across multiple sectors, including providing advice and support for company directors. She has contributed to multiple books on coaching and storytelling as an experienced coach and leader. Kim has acted as a patient adviser to several Long Covid trials, including Stimulate-ICP, and has ongoing lived experience of Long Covid.
Kim has been close to Long Covid SOS since 2020, and was part of the 'Message in a Bottle' film that raised awareness of Long Covid. She has continued to support the charity since its inception and is delighted to join the Board.
Kim believes that everyone with Long Covid deserves good quality care and support, and that the Long Covid SOS Bill of Rights is an important line in the sand for the rights of people with Long Covid.
Melanie Cassoff
Trustee
Melanie is an independent consultant working with Family Offices and Foundations. As an experienced charity CEO, she is highly skilled at strategy development, all stages of implementation, and with a focus on governance and process.
Melanie was the CEO of the Freelands Foundation for seven years, setting up and running a visual arts and arts education charity for Elisabeth Murdoch. Prior to that, Melanie was a private banker, having held senior positions at Deutsche Bank and UBS. Melanie began her career as a Management Consultant at Marakon Associates.
Melanie holds an MBA from INSEAD in France, a Master’s Degree from the London School of Economics and a Bachelor’s degree (Hons) from McGill University in Montreal, Canada, which is where she is from.
Amitava Banerjee
.jpg)
Trustee
Amitava Banerjee is Professor of Clinical Data Science, University College London, and Consultant Cardiologist at University College London Hospitals and Barts Health NHS Trusts. He is a researcher, educator and clinician with interests spanning data science, cardiovascular disease, global health, training and evidence-based healthcare. He has been active clinically and academically throughout the pandemic and is leading the NIHR-funded STIMULATE-ICP study looking at many aspects of Long Covid, including a large clinical trial of potential treatments.
After qualifying from Oxford, he trained in Oxford, Newcastle, Hull and London, completing a Masters in Public Health at Harvard(2004/05), an internship at World Health Organisation(2005) and DPhil in epidemiology from Oxford(2010). He was Clinical Lecturer in Cardiovascular Medicine in Birmingham, before moving to UCL in 2015.
Helen Lunt Davies
Trustee
Helen worked as an Archaeological Illustrator for 25 years after gaining a degree in Graphic Design and Scientific Illustration from Middlesex University. She retrained as a Silversmith and Jeweller at Central St Martins in 2019.
Helen has been suffering with Long Covid since contracting the virus in the first wave, March 2020. She has become a patient advocate for people suffering with Long Covid and is passionate about being a voice and campaigner for others suffering with this debilitating illness.
Helen has been a volunteer with Long Covid SOS since it was founded in 2021, and joins the board to add her communications expertise. She is passionate about raising awareness of Long Covid and ensuring people with the condition do not feel alone and isolated.