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Remote · Freelance · 2.5 days per week · £250 per day
1. About the role
Long Covid UK is seeking a part-time Chief Executive Officer (CEO). The role will prioritise fundraising, leadership and influence. This is a remote, freelance role, 2.5 days per week at £250 per day, on a 12-month contract initially with intention to renew.
Our immediate priority is to secure the funding, organisational capacity and infrastructure needed to sustain the work we do. As our Chief Executive, you will build on the considerable work already done, lead the delivery of our strategy and secure the resources, relationships and influence needed to achieve our ambitions.
Priorities and milestones will be realistic and agreed with the Board. An important part of your leadership will be making clear choices about what to prioritise, what to defer, and what can be done by others in the team.
2. About Long Covid UK
Long Covid UK is a national charity set up by and for people living with or affected by Long Covid. Our mission is to reduce the impact of Long Covid and improve the lives of all those affected by driving long-term, systemic change.
Registered as a charity in 2022, we grew out of an online peer support group set up by people experiencing ongoing symptoms following a Covid-19 infection. From the early days, its members became advocates, pushing for recognition and support. Through our online and in-person groups we now support over 70,000 people with Long Covid. We are the Secretariat to the All-Party Parliamentary Group on Long Covid, participate in the Covid-19 Inquiry alongside other Long Covid charities, and are an active member of the Overlapping Illnesses Alliance. Most of our team are personally affected by Long Covid.
Our research work stream champions and supports research that deepens understanding of Long Covid, amplifies the lived experience of people affected, and helps drive evidence-informed improvements in care, support and recognition.
3. Key responsibilities
Lead fundraising and strengthen sustainability, diversifying and increasing our income and developing strategic partnerships.
Lead the delivery and evolution of our 2026 to 2029 strategy, translating our ambitions into a clear programme of prioritised activity, measurable outcomes and achievable milestones.
Provide supportive leadership and management of the team, with proportionate oversight of reporting, communications, financial governance, HR and safeguarding.
Strengthen our policy and influencing work, building relationships and identifying opportunities to shape government policy, public services and institutional practice.
Oversee the development of our role in the Long Covid research landscape, championing meaningful involvement of people with lived experience in shaping research priorities and practice.
Champion the support we provide to people living with Long Covid, supporting those leading delivery.
Routine financial processing, administration and specialist tasks are undertaken by relevant colleagues or contractors.
You care deeply about improving life for people affected by Long Covid and share our commitment to lasting change. You bring ambition, initiative and sound judgement, alongside understanding of the condition and its wider context through lived experience or professional knowledge.
You understand the realities of a small charity where trustees, volunteers and contractors contribute in different ways. You adapt how you work as people's health and availability change, maintaining a sustainable pace without pressure on anyone to work beyond their capacity.
Your approach to leadership matters as much as your experience. You lead with integrity, humility and a strong sense of accountability.
Essential criteria
An accomplished fundraiser, able to develop funder relationships, identify realistic and strategic opportunities, and coordinate the contributions of others.
A confident communicator and relationship builder, able to represent our work clearly and persuasively with funders, government stakeholders, researchers, clinicians, the media and our community.
Able to work with trustees, volunteers and contractors to establish clear responsibilities, delegate effectively and keep attention on agreed priorities.
Confident in making difficult decisions, challenging constructively and maintaining focus on what matters most.
Commitment to our shared values: equality, diversity and inclusion; respect for confidentiality and the sensitive nature of the information we hold; a non-judgmental and empathetic approach to working with others; and the charity's safeguarding principles.
Desirable criteria
Understanding of Long Covid and its wider context, through lived experience or professional knowledge.
If you don't meet every requirement listed but feel you have most of the skills and experience we're looking for, we would still very much welcome your application.
5. The difference you will make
People with Long Covid continue to face significant gaps in recognition, support, services and research. Some have now been unwell for over six years, and unfortunately the number of people affected continues to grow. You will help us strengthen our ability to respond and bring about lasting change.
You will work with an active and experienced Board of Trustees and Chair, a committed volunteer team and freelance contractors. You will have support from a freelance bid writer, trustees, an experienced Treasurer and colleagues providing bookkeeping, administration, volunteer management, research and peer support facilitation.
6. How to apply
Apply for the Chief Executive Officer (CEO) role by Tuesday 24 November 2026.
Following completion of an onboarding assessment, this role is subject to an Enhanced DBS check (including Adults' Barred List, where applicable), depending on the nature of activities and level of engagement with vulnerable adults.
7. Equal opportunities statement
We are committed to fostering an inclusive and diverse environment where everyone is treated with dignity and respect. We provide equal opportunities for all, regardless of age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex, or sexual orientation. We actively encourage applications from all individuals of all backgrounds, particularly those with lived experience of Long Covid.