Co-design of a shared consultation guide for identifying and managing long Covid in adults

This project involved the co-design of a simple guide for use by nurses and patients in primary care to support the appropriate identification and management of long Covid – a newly emerging and poorly understood condition – to improve health outcomes and reduce patient safety risk.

Long Covid, or post-Covid-19 syndrome, is a new but relatively common condition. Complex presentation can make diagnosis difficult, with patients struggling to access appropriate treatment and support. Failing to appropriately identify and manage people with long Covid poses a safety risk for patients and population health, and a potential professional risk for nurses.

While nurses are well placed to support timely identification, referral and treatment of long Covid, and enable patients’ self-management of symptoms, they need practical resources to guide best practice. This project involved the codesign of a shared consultation guide to address this gap, while enhancing patient safety and experience.

SARS-CoV-2 has accounted for millions of deaths worldwide (WHO 2025). The terms ‘long Covid’ or ‘post-Covid syndrome’ are used to describe the lasting effects of Covid-19, which can involve multiple organs and systems, including the respiratory, cardiovascular, neurological, gastrointestinal, endocrine and musculoskeletal systems (Sudre et al, 2021; Bonow et al, 2020; Leung et al, 2020).

Survivors of Covid infection may experience significant ongoing health problems (Crook et al, 2021). Furthermore, the increased risk of developing other serious health conditions associated with long Covid (Bowe et al, 2023) poses a safety risk for individuals and population health more broadly, particularly in the absence of appropriate diagnosis and treatment.

The severity of acute Covid-19 infection does not appear to be linked to the occurrence of long Covid symptoms (Shah et al, 2021), so individuals who experienced mild symptoms during the acute phase can present with late-onset symptoms that health professionals may not associate with Covid-19 (Maxwell, 2021a). This is further complicated because long Covid is a relapsing and remitting condition, often involving multisystem symptoms that vary wildly from the commonly reported respiratory symptoms (National Institute for Health and Care Research (NIHR), 2020).

Missed identification of long Covid is a potential safety risk for patients and a professional accountability issue for nurses so, alongside the development of NHS England’s (NHSE) (2022) long Covid framework, it was recognised that there was a need for a practical guide that nurses could use with patients to support identification and self-management of long Covid, enhance outcomes and minimise patient safety risks for both patients and staff.

Methods

The project and its aims were shared with key stakeholders, including advocacy representatives and groups, including the Long Covid UK network, strategic-level nurse leaders and policy-making bodies, including NHSE, Health Education England (HEE), the Queen’s Nursing Institute (QNI) and those involved in developing the long Covid framework.

This led to a collaborative partnership with NHSE’s chief nursing officer directorate and a researcher working on the NIHR-funded Post-hospitalisation Covid-19 study, in consultation with wider stakeholder groups. A project advisory board provided strategic advice on developing and testing the guide, and supported wider stakeholder buy-in.

We adopted a co-design approach guided by the following principles:

  • Inclusivity: involving key stakeholders who would be affected by, or involved in, the guide’s use;
  • Respect: valuing all participants as experts, with equal standing and contributions;
  • Participation: creating an open, responsive, and empathetic process through conversations and activities, in which dialogue and engagement generated new shared meanings;
  • Iteration: and continuous improvement;
  • Focus on outcomes: designed to achieve specific, practical outcomes, with potential solutions rapidly tested before scaling up and spreading the change.

This approach aligned with the co-production model outlined by NHSE and the Coalition for Personalised Care. We also drew on Woodward et al’s (2024) framework for co-designing prototype clinical practice tools. Involving key stakeholders in this way ensured their perspectives influenced the design process (Hickey et al, 2018) – resulting in the prototype guide. Co-design participants included:

  • People with lived experience of long Covid;
  • Healthcare staff from acute, primary and community care;
  • Specialist nurses;
  • Staff with expertise in long Covid, including nurses working in specialist long Covid services;
  • Advanced nurse practitioners;
  • Nursing and policy leaders.

Online co-design workshops were supplemented by remote email contributions from people with lived experience of long Covid who were too unwell to attend. In total, 41 people (24 male, 17 female) participated in the co-design process, resulting in a prototype guide, validated by co-design participants.

The final development phase involved a sense-checking and quality assurance process involving primary care nurses (n=8), members of the QNI long Covid community of practice and the HEE long Covid clinical reference and education framework groups. They provided feedback on the guide’s perceived feasibility and potential usefulness in supporting nursing practice, along with suggestions for any changes or additions that might be needed to ensure the guide was fit for purpose.

Feedback on the potential value and feasibility of using the guide in practice was unanimously positive, e.g. "User-friendly, feasible to use in practice and share via GP systems", but also included suggestions for improvement which were incorporated into the final version.

Adopting a co-design approach: five tips

  • Adopt an inclusive and open-minded approach that is open to ideas and contributions not initially anticipated.
  • Involve a wide range of stakeholders early and adopt a ‘snowball’ approach to identify/include key groups as you progress.
  • Create a safe space for joint working in which all contributions are valued and recognised.
  • Actively coordinate, communicate and facilitate the co-design process to support continued engagement and maintain focus on the agreed aim(s).
  • Recognise that co-design takes time and commitment from all involved.

Results

A co-design approach was successfully used to enable the development of a shared consultation guide for use in clinical practice. The guide comprises two elements:

  1. A decision-making flowchart for clinicians, which includes prompts to stimulate consideration of known ‘red flags’ associated with long Covid;
  2. An easy-to-use, shared assessment document to be completed either by the patient beforehand or with the clinician during the consultation.

The guide is designed to support comprehensive self-assessment – involving a carer/clinician where appropriate – and to facilitate the development of a clear, shared management plan with the patient.

Page from the long Covid assessment document with a diagram of the body, asking questions about the patient's symptoms related to various body parts/organs

Long Covid shared assessment document, asking patients about their symptoms by body part/organ, their severity, fluctuation over time, and impact, and their Covid infection and vaccination history.

Conclusion

Nurses are ideally placed and possess the appropriate skillset to identify and support the management of individuals with long Covid but they need practical, evidence-informed guidelines to support effective practice in this evolving area.

This project outlines how a co-design approach was used to enable the development of a fit-for-purpose, practical guide to address this need. Further testing in clinical practice is necessary; if successful, the guide may help mitigate potential patient safety and professional accountability risks associated with unidentified long Covid.

Project team