Long Covid affects over 2 million people in the UK, spanning all demographics, regions, and age groups. Many individuals with Long Covid experience debilitating symptoms that severely limit their daily life. There is limited healthcare or support to help people manage their condition, and many are not recovering. As a result, for countless people, the ongoing effects of this illness are having a devastating impact on their lives.
Given the scale and impact of the Long Covid problem, we need the collective support, and urgent and comprehensive action, of government decision makers, funders, policy makers, health service managers, clinicians, researchers, employers, educational institutions, the media, civil society organisations and the public to bring about change.
There is a lot to do to solve the problem of Long Covid. To support this, as we transition and grow, we have developed a new three-year strategy.
Our mission
Our mission is to build a supportive community for people affected by Long Covid and develop our network so that together we can accelerate the search for treatments, push for access to appropriate healthcare services, enable access to wider support, and minimise the number of people developing the condition.
Our strategy focuses on 5 areas:
- Build a community of support, our organisation and a wider network for change
- Accelerate the search for treatments
- Push for access to dedicated health and care services
- Enable access to appropriate work, welfare and wider support
- Prevent new cases of Long Covid
Our goals
- Build a community of support, our organisation and a wider network for change
Our community is the heart of our organisation. We want people with Long Covid to feel part of a supportive community, where they can safely share their experiences, learn about new research, discover what has worked for others and access opportunities to volunteer and work if they want them. We want individuals to find and offer support in ways that suit their needs, both from us and others, and help raise awareness of the scale, impact, and reality of Long Covid, so together we can drive change. Building the community of support, our organisation and wider network is therefore essential to drive progress on the four goals outlined below.
To make this happen we need:
- To serve a large and demographically diverse group of people affected by Long Covid, enabling them to connect with our own and others support services and opportunities to volunteer and work as appropriate
- To provide the tools, leadership and connections for people with Long Covid to influence decision makers so together we can effect change
- Mechanisms and routes for people with Long Covid to share their experiences, data, insights and evidence of the challenges, impacts and solutions
- A resourced and sustainable organisation to focus on supporting the community, facilitating connections, developing and sharing tools, evidence, insights, research, good practice and other solutions to drive change.
- Monitoring and measurement of the numbers of people with Long Covid and the impact on the health service and wider economy
- Consistent and accurate media coverage of Long Covid, reporting on facts, sharing latest research from professional bodies and institutes and publishing patient-led stories about challenges and recovery
What we will do:
- Expand our community online and in-person, including to people in communities that may be otherwise excluded, and offer the information, advice, connections, wellbeing support, events and expert talks people want
- Offer members of the community Long-Covid-friendly opportunities to contribute to the effort to effect change through a range of volunteer and paid roles
- Develop systems for feedback and data collection from the community to track needs, challenges and evolving experiences over time
- Promote and develop our Research Involvement Consultancy to give people with Long Covid easier access to getting involved in research
- Build the capabilities, capacity, central functions and tools of the organisation so we can support the community of people affected by Long Covid, provide them with the data, evidence, tools and mechanisms to advocate and campaign for change, and legitimately and credibly represent them to influence decision makers
- Build our network and partnerships with other charities, professional bodies and research institutes so that people with Long Covid can access support from others with similar conditions and we can share data, evidence and insight about Long Covid.
- Accelerate the search for treatments
We want the search for treatments to be accelerated, driven by the needs, experiences and priorities of those living with Long Covid. This will ensure that research is focused on identifying the most effective treatments and facilitating their rapid adoption.
To make this happen we need:
- A national cross-government taskforce and strategy for finding and adopting treatments for Long Covid, headed by a dedicated minister, that convenes UK researchers, the private sector, people with Long Covid and their advocates
- Ringfenced £100m of dedicated annual research funding for research into Long Covid and its symptoms
- Partnership with pharmaceutical, life sciences and other companies in the health sector, to increase the focus on Long Covid
- International collaboration on research into Long Covid
- Involvement of people with Long Covid in the identification of research priorities, selection of studies that are funded and the design and delivery of relevant research networks, studies and clinical trials.
What we will do:
- Use our connections and networks with MPs, ministers, government officials and advisers to campaign for policy change and facilitate involvement of people with Long Covid in national policy development that accelerates the search for treatments
- Promote opportunities for patient participation and involvement in research and clinical trials via our network, website, social media platforms and groups
- Expand our influence on researchers and scientists through deepening and widening our international network with researchers and scientists, including through hosting events
- Promote and develop our Research Involvement Consultancy to give researchers easier access to people with Long Covid for involvement in research design, and when conducting studies and clinical trials.
- Work with specialist partners, including Costello Medical, to create a Research Dissemination Toolkit to share findings of research in clear and impactful ways to a range of audiences.
- Push for access to dedicated health and care services
We want all people with Long Covid across the UK to have access to dedicated, safe and high-quality NHS services and treatments for Long Covid.
To make this happen we need:
- Long Covid to be identified as a priority in national, regional and local health system planning and strategies
- Design, rollout and delivery of a best practice Long Covid service, developed in partnership with people with Long Covid
- Establishment of Centres of Excellence across the UK for specialised care.
- Urgent updating of NICE guidelines, coproduced with people with Long Covid, and development of other mechanisms via networks of healthcare professionals for expediting the results of research into practice by policy makers and clinicians
- Education of health care professionals via student training, professional development programmes and guidance from their Royal Colleges and professional bodies and a national network for sharing insights and best practice on treating Long Covid.
What we will do:
- Use our connections and networks with MPs, ministers, government officials and advisers to campaign for policy change and facilitate involvement of people with Long Covid in national policy development that ensures equal access to dedicated, safe and high-quality services for Long Covid
- Produce and share materials to educate others about the realities of Long Covid and what helps
- Work with the Department of Health and Social Care, NHS England, NICE and others to update the Long Covid NICE guidelines and facilitate involvement of people with Long Covid into the process
- Support people with Long Covid to identify what a good Long Covid service looks like and work with the NHS to embed a standard Long Covid pathway across the UK
- Provide people with Long Covid the tools to advocate for the health and care services they want and need
- Partner with networks of healthcare professionals, like the Royal Colleges, educational institutions and training centres, to share insights and good practice on treating Long Covid.
- Enable access to appropriate work, welfare and wider support
We want all people with Long Covid to have access to appropriate work and welfare, so they have the financial support to manage their health and wellbeing.
To make this happen we need:
- Long Covid to be recognised as a disability in the UK equalities act and by the EHCR, and as an occupational disease in line with other European countries and the Industrial Injuries Advisory Council recommendations
- People with Long Covid to have access to dedicated employment, welfare and benefits advice and tools to advocate for support and understanding
- Employers to understand the challenges faced by people with Long Covid, and to meet their responsibilities to make reasonable adjustments so that people with Long Covid can participate in as much work as their capacity allows.
What we will do:
- Use our connections and networks with MPs, ministers, government officials and advisers to campaign for policy change that addresses the issue of work and welfare for people with Long Covid, including through input on white papers
- Support people with Long Covid in applying for benefits through training our volunteers and partnering with other relevant charities that specialise in providing welfare and benefits advice to ensure as many people as need it have access to this advice
- Develop a Long Covid Support employment advocacy service, in partnership with others, to offer employment advice and provide tools for people to advocate for reasonable adjustments at work
- Support employers to understand the challenges faced by people with Long Covid and the reasonable adjustments people with Long Covid need to participate in work as well as they can by working in partnership with the TUC and others to regularly update surveys and share their findings
- Facilitate involvement of people with Long Covid in the development of guidance for employers prepared by the Society for Occupational Medicine and EHRC
- Build our partnerships with other disabled people's organisations to promote understanding of Long Covid as a disability and increase rights to flexible and remote working and other reasonable adjustments feed into policy, including through the White paper on welfare and work.
- Prevent new cases of Long Covid
We want the number of people developing Long Covid to be mitigated and minimised, and to reduce the risk of future long-term illness post-infection.
To make this happen we need:
- Public health messaging about the ongoing dangers of Long Covid, the risk of developing Long Covid following Covid infection, how to recognise the wide array of symptoms and actions to take to aid recovery (e.g. encouraging people to rest in the early phases of illness rather than pushing through)
- A national commitment to air purification in new and existing public buildings, including hospitals and schools
- Practical protection measures to reduce exposure to Covid and the risk of developing Long Covid, developed in partnership with people with Long Covid and widely promoted with healthcare professionals, schools and employers
- Access to vaccines and antivirals for the people that need them
- Government to learn from previous failures to prepare and respond to the potential long-term impacts during the emergency phase of the pandemic, via the Covid Inquiry and involvement of people with Long Covid in future pandemic planning.
What we will do:
- Use our connections and networks with MPs, ministers, government officials and advisers to campaign for public health messaging about Long Covid and protection against Covid-19, and facilitate involvement of people with Long Covid into its development
- Produce and share materials about the practical measures that healthcare professionals and others can take to protect themselves against Covid-19 and reduce the risks of developing Long Covid
- Continue to work with other Long Covid groups to represent people with Long Covid and their experiences as a core participant of the Covid Inquiry
- Work in partnership with other patient groups and charities to ensure the government involves people with Long Covid and other illnesses in future pandemic planning.