Long Covid Scotland is collaborating with partners to find solutions for people living with Long Covid
Who are we?
Long Covid Scotland is a volunteer-led charity run by people living with Long Covid on behalf of those living with Long Covid.
We collectively advocate on employment and benefits, research and local and national policy. We are derived from Long Covid Support, a successful charity and campaign with over 55, 0000 members, represented at Independent SAGE, the ISARIC global research forum, and the All-Party Parliamentary Group on Coronavirus.
We are advocating for rehab, research and recognition for people living in Scotland. We have partnerships with various organisations, including Scottish Government, Health and Social Care Alliance Scotland, and various universities. We are keen to develop new partnerships, including with other chronic illness groups and charities.
What is Long Covid?
Long Covid (or Post-Covid Syndrome) refers to prolonged and debilitating COVID-19 experiences. The typical profile includes young, previously healthy adults, who were often active and hard-working prior to becoming unwell. Long Covid also has a significant effect on children and adolescents, as identified by the Long Covid Kids campaign.
The Office of National Statistics estimate 2.1 million people in the UK are living with the condition, which equates to over 187,000 people in Scotland. Given Long Covid goes uncounted and misdiagnosed, the true figures could be higher.
People with Long Covid experience the following:
Severe and serious symptoms. Long Covid can affect the entire body. Cases vary greatly, with symptoms including but not limited to: breathing difficulties, chest pain, numbness, fatigue, tachycardia, and allergies, often in a relapsing and remitting pattern. The impacts upon activities of daily living are considerable.
Difficulties accessing care. Despite serious cardio-respiratory and neurological symptoms, most people with Long Covid cannot access primary or secondary care investigations and treatment. Some describe health practitioners who are sympathetic but are unsure how to help, whereas others describe being dismissed and exhausted at having to research and advocate for themselves.
Receiving inappropriate and dangerous advice. Some are prescribed interventions such as Graded Exercise Therapy, which was recently removed from the NICE Guidelines for similar conditions. GET is contraindicated for fatigue symptoms and can exacerbate symptoms of cardiac injury, which is found in approximately 30% of Long Covid cases.
Psychological trauma. Experiencing a serious infection, prolonged illness, and in many cases invalidation from family, peers and even health practitioners, can lead to complex trauma and even suicide. Understandably, people may be reticent to ask for help, and those who do ask may not get what they need.
Difficulties working, studying and being a carer. Many with Long Covid are unable to work, study or carry out caring responsibilities. Those who do return to work, study or care often push through out of necessity, to the further detriment of their health. Some struggle due to disbelieving and unsupportive employers and lecturers.
Financial problems. Many with Long Covid experience considerable financial difficulties from being unable to work, and/or from having to pay for private investigations and support. Despite meeting the criteria, many are being refused disability benefits.
Discrimination. People with Long Covid are discriminated against due to lack of testing or negative tests, not having been hospitalised, and for pre-existing inequities such as socioeconomic status, race, gender, and disability. This is exacerbated by health practitioners and researchers having more power than patients and carers.
What do people with Long Covid need?
AWARENESS & RECOGNITION
Knowledge education and support for health professionals: Health professionals must be adequately informed and supported in their roles. Comprehensive patient-informed guidelines for GPs, specialists, and other health professionals, including strategies to mitigate common medical bias, are essential for diagnosis and treatment.
Public health awareness of COVID-19 and Long Covid: While Long Covid has become better known, it is not understood. The dominant narratives suggest young people experience ‘mild’ disease, and that children do not get ill or transmit the virus — these are falsehoods. Public understanding of morbidity is pivotal in reducing the spread of COVID-19.
Information for employers, unions and universities. People with Long Covid who work or study may have difficulties that are hard for their employers or lecturers to understand fully. Employers, unions and universities need information, informed by patients, on how to support people returning to or starting work and study.
Formal Recognition of Long Covid as a disability. Despite the debilitating, long-term nature of the condition, many with Long Covid are told they do not have a disability, preventing them from accessing appropriate services and support. This must be rectified.
Recognition for other chronic conditions. While our lived experience is Long Covid, we recognise its overlap with conditions such as ME, PoTS and MCAS, which historically have been stigmatised and under-researched. People with other chronic conditions bring essential knowledge, and should benefit from research and services developed.
THERAPY & REHABILITATION
Fully funded and informed care: The current funding from Scottish Government amounts to around £16 per person. To meet needs across Scotland, services for investigations, care, and safe rehabilitation must be funded, and co-produced with people with Long Covid. This is urgent, as many people with Long Covid are unable to access basic support, including for severe and serious symptoms.
Multi-disciplinary support: Care cannot fall solely on the shoulders of GPs. Fully funded multi-disciplinary support, including time with consultants and organ-damage screening, would reduce time pressures, allow for the needed investigations, allow better communication between health professionals, and offer opportunities for research in action.
Long Covid care strategy: There is currently no national strategic framework or guidelines to support health boards. A patient-informed model based on good practice to date would ensure consistency where possible and prevent duplication of work. Boards could then tailor the model where required.
Occupational therapy and practical support: People also need social care support for managing at home, especially caregivers and people who live alone, yet people with Long Covid struggle to get referred.
Psychological support: High-quality mental-health support is essential and must be patient-led, and given people report feeling isolated, not dependent on leaflets or online self-help measures. Peer support can continue but should be recognised and funded as a secondary source of support.
STUDY & RESEARCH
Equitable patient and public involvement (PPI): People with Long Covid are assets to researchers. As with the design of medical services, they need to be involved in research from its onset, regardless of background, test status, and hospitalisation status.
Epidemiological and mechanistic studies: While ONS statistics are a start, Long Covid must be better counted in populations to determine incidence and risk factors across all age groups. Long Covid must also be studied at the biological level to understand the unique footprint of the disease. Though research has begun, there is still a way to go.
How was this information collected?
These recommendations are informed by high-quality journal research, and patient-led research, including surveys and focus groups. Key points are also confirmed by formal research and undertaken by various institutions and health agencies in the UK and Scotland.
Long Covid Scotland
Statement of purpose
Patient and Public Involvement and Engagement in Research
Long Covid Scotland (LCS) believe that public and patient involvement and engagement (PPIE) is crucial to the development of effective research, service development and innovations. It is very different from participation in research.
Engagement is when information about research is shared with those affected by Long Covid or the wider public. This can happen in many ways:
Public talks
Blogs and journal articles
Outreach events
Typically, in engagement activities, patients and the public are finding out about research that has happened and they do not have the opportunity to influence the research. However, patients can also be involved in co-producing engagement activities.
Involvement in research is where researchers collaborate with patients and the public. This involves listening and responding to patient insights and should take place at all stages of the research life cycle:
Determining research priorities
Providing feedback and advice on study design
Collaborating on funding applications
Reviewing patient facing materials such as Information Leaflets
Sense-checking data
Writing a Plain English Summary of the results
Being involved throughout the research cycle helps to improve the relevance, quality and impact of studies. It gives us the opportunity to be a critical friend, raising concerns directly with the research team and working together to find solutions.
Participation in research is where patients or healthy volunteers take part in research. For example, completing a questionnaire or being part of an experimental treatment.
The Health Research Authority (HRA), the National Institute for Health Research (NIHR), Association of Medical Research Charities (AMRC) and other funding organisations have written a statement on the crucial role of PPIE in health and social care research.
“Public involvement is important, expected and possible in all types of health and social care research.”
HRA, NIHR et al. June 2022.
UK Standards for Public Involvement are an important factor in creating a research culture that welcomes the public into research, and helps researchers and organisations work with the public https://www.invo.org.uk/wp-content/uploads/2019/11/UK-standards-for-public-involvement-v6.pdf
Long Covid Scotland works directly with individual researchers and as part of nationwide collaborations. We advise Patient and Public Involvement coordinators throughout Scotland and in the rest of the UK about the experience of living with Long Covid. However, our involvement in this activity should not be taken as endorsement of a particular study.
If any research participant feels they have any issue with study participation or involvement as a volunteer then it is important they contact the research study team to alert them of this.
