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
MEET THE TEAM
Sarah Barley-McMullen
Chair of trustees and volunteer
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.
Helen Lunt Davies
Volunteer
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.
Garry Loftus
Volunteer
Garry served in the British Army for 25 years. He contracted COVID-19 in December 2020.
As Garry loves the sea he now applies a daily mantra close to his heart: "One day, one wave at a time" in order to battle his own Long Covid.
Garry is highly driven to support, help and guide people in the best way he can, by becoming a voice for those that need one.
Janet Gunter
Volunteer
Janet has dedicated her professional life to working alongside social movements, and founding and running a non-profit. Quakers and Amy Goodman (Democracy Now!) helped turn her into campaigner as a teenager in the US, and she hasn't stopped since. She is a "first waver" - she got sick in April 2020 and never recovered. Since then she met her fellow sick activists online, and started learning about disability justice and the history of people fighting for help with chronic illness. She helps Long Covid SOS with fundraising and strategy.
Yvonne Alder
Volunteer
Yvonne trained and performed in IDTA dance, and was accepted into a recorder orchestra from a very young age. She trained as a Financial Advisor later transforming to a worldwide advertising company paper based and digitally helping customers promote their business whether small or large. Yvonne also worked for a telecommunications organisation for over 10 years in various roles from customer service training and business sector account manager. She loved travelling and exploring different countries as well as singing in a choir, dancing snorkelling and swimming before becoming very ill.
Yvonne now lives with Long Covid after contracting Covid-19 in March 2020. Her desire is to be an advocate reaching out to individuals and carers who do not realise they or someone they know has this condition.
