This project is part of a national consortium

Contact: Professor Nisreen Alwan MBE, University of Southampton

Currently in England, there are 90 specialist Post Covid services in which assessment and treatment of Long Covid, and other complications of COVID-19, are informed by NICE guidelines and growing expertise in the field. However, there is evidence that access to such clinics and related care pathways, the nature of those pathways, and patient experience, varies. Research is required to inform diagnosis, care, public health strategies, policy planning, resource allocation and budgeting. It is likewise essential to define the usual care pathway in Post Covid services, and to understand patient presentation, and the effectiveness and cost of care.

The STIMULATE-ICP consortium includes: University College London Hospitals NHS Trust, University College London, University of Central Lancashire, LongCovidSOS, UK Doctors #Longcovid, Royal College of General Practitioners, University of Liverpool, Liverpool University Hospitals Foundation Trust, Perspectum, Living With, University of Hull, Hull University Teaching Hospitals Trust, University of York, University of Leicester, University of Exeter, University of Southampton, University of Sussex, Alliance Medical, GE Healthcare, Olink, Francis Crick Institute, NIHR Applied Research Collaboration South West Peninsula, NIHR Applied Research Collaboration East Midlands, NIHR Applied Research Collaboration North Thames, NIHR Applied Research Collaboration Yorkshire and Humber, NIHR Applied Research Collaboration North West Coast, British Heart Foundation Data Science Centre, BHF Data Science Centre, Health Data Research UK, Office of National Statistics, Royal Devon and Exeter NHS Trust, as well as NIHR Clinical Research Network support.

Plain English Summary of findings:

23 interviews were completed with people with probable Long Covid

We found…

• There was a lack of awareness of Long Covid, its symptoms and the support available for people with Long Covid
  

• An assumed lack of awareness of Long Covid within healthcare
  

• People with Long Covid symptoms experienced doubt and uncertainty about the cause of their symptoms
  

• Experiences of stigma and discrimination were commonly experienced by people with probable Long Covid.
  

• This included experiences of age and gender discrimination, experiences of being dismissed, unsympathetic attitudes and social exclusion.
  

• People with probable Long Covid reported feeling embarrassment, feeling tainted and/or different to others because of their Long Covid symptoms.
  

• In addition, they expected disbelief and/or judgement from others because of Long Covid
  

• People with Long Covid were sometimes reluctant to seek care due to worries surrounding possible investigations and medications, or worries about symptoms being wholly attributed to mental health conditions. There were also concerns about burdening the NHS.
  

• The nature of Long Covid symptoms made accessing care difficult. Long Covid symptoms can often come and go or fluctuate, and sometimes one symptom may be more prominent than others. This can mean some symptoms can be overlooked by patients and healthcare professionals.
  

• Experiences of people with Long Covid are also constitute epistemic injustice, or inequality surrounding creating, interpreting and conveying knowledge.
  

• This is due to the lack of awareness and knowledge of Long Covid both in the community and within healthcare.

What we did

Research findings from this study and the NIHR funded HICOVE study have been translated into an easily-usable webtool. This tool aims to encourage people with probable Long Covid who have not yet sought help and support from the NHS or other services to do so. It covers topics of self-doubt, stigma and effects on mental health as well as offering resources, tips, and advice on next steps.

This tool is primarily aimed at people who may have Long Covid but are not currently accessing care but may also be helpful to those who are. It is also aimed at healthcare professionals, social prescribers, as well as community organisations to raise awareness about the difficulties and stigma people, particularly those from disadvantaged backgrounds, may face when considering reaching out for a consultation or community support.

The webtool is available here: Supporting Long Covid Care (long-covid-care.org.uk)

Where next?

We are working on disseminating the Supporting Long Covid Care webtool as widely as possible. We will create an offline version of the tool so this is accessible to people who are not ‘online’. We will also include translations of this into community languages. This will be available to download from the website and from community organisations.

We are also looking at ways to evaluate the webtool.

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