Supporting Long Covid care: a webtool to facilitate help-seeking among people with Long Covid

Abstract

Background: Long Covid (also known as Post-COVID19 Condition or Post-COVID Syndrome) is characterised by persistent symptoms following SARSCoV2 infection not explained by other pathology. Some evidence suggests that people from marginalised communities are more likely to experience Long Covid but are less likely to be represented in post-covid care in England.

Objectives: findings from the STIMULATE-ICP case finding and HI-COVE studies show that some people living with Long Covid struggle to get adequate healthcare and social support. Barriers to obtaining support include a lack of awareness of Long Covid and supports available, uncertainty around the cause and complexity of symptoms, as well as experiences and expectations of stigma. The new Supporting Long Covid Care (SLCC) webtool was developed based on these findings and aimed to both facilitate help-seeking for people with probable Long Covid who are not receiving care and raise awareness among professionals. Extensive engagement with people with lived experience and professionals shaped the webtool. SLCC content was then beta-tested with stakeholders.

Results: SLCC (long-covid-care.org.uk) was launched in March 2024. One of its features is the acknowledgement that Long Covid can be a stigmatising condition. SLCC includes real-life quotes to connect emotionally with users, highlights the shared experiences of people living with Long Covid and illustrates the difficulties faced when seeking recognition and support. It encourages conversations with professionals, friends, family and others who may be relied on for support and offers resources to facilitate those conversations and inform next steps. SLCC is also an informative tool for healthcare professionals around Long Covid stigma.

Conclusions: SLCC is open to use by members of the public. Real-world evaluation and translation to other languages are now needed to explore if this webtool is beneficial and contributes towards addressing health inequalities.

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Identifiers

ORCID for Donna Clutterbuck: orcid.org/0000-0001-5622-3076

ORCID for Nisreen A. Alwan: orcid.org/0000-0002-4134-8463

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