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Long COVID: why are people still struggling to access care?

Carolyn A Chew-Graham is a GP in Manchester and Professor of General Practice Research at Keele University.

Ashish Chaudhry is a GP Partner at Lower Broughton Health Centre, Clinical Lecturer at the University of Manchester, and Centre for Pharmacy Postgraduate Education Medical Tutor.

Donna Clutterbuck is a Research Fellow at the University of Southampton.

Dipesh P Gopal is a GP and National Institute for Health and Care Research School for Primary Care Research Primary Care Clinicians Career Progression Fellow at Queen Mary University of London.

Tom Kingstone is a Senior Lecturer in Mental Health and Wellbeing at Keele University and Director of the ‘Supporting The Advancement of Research Skills Programme’ at Midlands Partnership University NHS Foundation Trust.

Amali U Lokugamage is a Consultant Obstetrician and Gynaecologist, and Honorary Associate Professor at University College London.

Damien Ridge is Professor of Health Research at the University of Westminster.

Nina Smyth is a Reader in Psychology at the University of Westminster.

Nisreen A Alwan is Professor of Public Health at the University of Southampton and Honorary Consultant in Public Health at University Hospital Southampton NHS Foundation Trust.

Long COVID, also known as ‘post-COVID-19 condition’,1 involves the experience of persistent symptoms for >12 weeks following infection with SARS-CoV-2. The National Institute for Health and Care Excellence (NICE) uses the term ‘post-COVID-19 syndrome’.2 Symptoms can be physical, cognitive, or psychological, and include fatigue, brain fog, shortness of breath, aches, and pains.3 Long COVID impacts on all aspects of people’s lives, including work.4–6 People with long COVID experience poor emotional wellbeing and some fear for the future in case of re-infection and/or relapse.5,6 Symptoms can vary day to day as well as improve only to recur.

Long COVID has not gone away

Long COVID is estimated to affect 2 million adults in England and Scotland.7 Prevalence estimates are based on observational data and figures are likely to be higher as people are no longer routinely testing for acute COVID-19 infection.8

“Long COVID is estimated to affect 2 million adults in England and Scotland.”

People from ethnic minorities were disproportionately affected by COVID-19, related to socioeconomic deprivation and working in COVID-19 exposed sectors, such as health or social care, and these inequalities persist in long COVID.9 People from marginalised groups face additional barriers to help seeking: those from ethnic minority backgrounds may experience additional stigma and discrimination, hindering access to appropriate healthcare.10,11

What do people with long COVID want from their GP?

People can find it difficult to present to primary care for support with long COVID because of a lack of awareness of symptoms, not feeling like a candidate for care, as well as fear of being treated unfairly.12 People with long COVID want their symptoms to be taken seriously and to be believed by their GP.13 A lack of understanding from healthcare professionals around the condition can result in people feeling dismissed, stigmatised, and gas-lighted.14 People struggle to access appropriate support, and report that their healthcare needs are not being met.15,16 People value continuity of care, as first highlighted by the work of Kingstone et al, which is still salient 4 years on.13

When a patient presents to primary care it is important that new symptoms are not put down to long COVID without adequate history taking, examination, and investigation. Problems that need to be looked for, and for which management can be offered, include postural orthostatic tachycardia syndrome (POTS)17 and mast cell activation syndrome (MCAS – https://ukmasto.org).18 It is crucial to check lipids and liver function tests (LFTs) as emerging evidence suggests that long COVID can be associated with dyslipidaemia and deranged LFTs.

It is important that symptoms connected with long COVID are not psychologised, or wholly attributed to mental health conditions such as low mood, anxiety, or stress. The impact of long COVID symptoms on mental health and wellbeing, however, needs to be acknowledged and explored.6 A person needs to trust their clinician and feel that their symptoms are being believed, taken seriously, and investigated to enable an empathic discussion of mental health impacts of long COVID. People with long COVID value employment support4,18 and referral to a post-COVID clinic if this service is available.

Where else are people seeking help from?

“A lack of understanding from healthcare professionals around the condition can result in people feeling dismissed, stigmatised, and ‘gas-lighted’”

There is widespread use of alternative or complementary (frequently non-evidence-based) treatments, including supplements as well as private healthcare providers. Many of these approaches are expensive thus excluding people with limited resources. In a study by the Health and Social Care Alliance Scotland,19 67% of responders had accessed alternative or holistic treatments for their long COVID symptoms. These people reported feeling fortunate to be able to do this, but this is not a long-term solution for people under financial constraints, especially when long COVID impacts people’s ability to work.4,19 Other people with long COVID seek help from family, friends, and religious organisations.10

Is there any evidence for new treatments?

Although there is no standardised treatment for long COVID and treatment options are limited, there is hopeful research on treatment and support for people with long COVID. For example, the LISTEN study:20

• developed a new co-designed personalised support intervention delivered to people across England and Wales;
• showed the value of healthcare professionals being trained to listen, validate, and help with problem-solving and self-management strategies; and
• resulted in positive patient outcomes — an improvement in fatigue levels, emotional wellbeing, and quality of life.

Supporting long COVID care

Waiting lists for post-COVID clinics, if commissioned, are long. People with long COVID report difficulty in accessing these clinics,10,15 support not matching their needs, and being discharged back to primary care even if they have not recovered.10,15

“Supporting Long Covid Care provides guidance on how to overcome some of the challenges people have when seeking support for long COVID.”

Findings from the recent NIHR-funded STIMULATE-ICP (https://www.stimulate-icp.org) and Hi-COVE studies have informed the development of a web-tool that aims to mitigate barriers to accessing care, including stigma. The former, a community-based study, identified people with probable long COVID. The Hi-COVE study explored the lived experiences of long COVID in people from ethnic minority backgrounds.10 The research teams, alongside people with long COVID, have developed an evidence-based resource (‘Supporting Long Covid Care’) that you can share with your patients: https://long-covid-care.org.uk

This tool acknowledges that long COVID can be a stigmatised condition and helps to minimise this stigma by encouraging conversations with professionals as well as friends, family, and others who may be relied on for support by patients. Supporting Long Covid Care provides guidance on how to overcome some of the challenges people have when seeking support for long COVID. The tool can be used by people living with long COVID or by professionals, including primary care teams, for guidance on supporting patients with long COVID and as a resource to give to patients. The tool is accessible online, and a printable PDF can be downloaded.

You may not be aware that Your Covid Recovery has been stood down; however, some of the resources can still be found at: https://www.nhs.uk/conditions/covid-19/long-term-effects-of-covid-19-long-covid

People living with long COVID symptoms should be encouraged to seek support from primary care, and primary care clinicians must be responsive to patient need. It is hoped that Supporting Long Covid Care will facilitate this.

References
1. Callard F, Perego E. How and why patients made long covid. Soc Sci Med 2021; 268: 113426.
2. National Institute for Health and Care Excellence (NICE). COVID-19 rapid guideline: managing the long-term effects of COVID-19. London: NICE, 2024. https://www.nice.org.uk/guidance/ng188 (accessed 21 Jun 2024).
3. Davis HE, McCorkell L, Vogel JM, Topol EJ. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 2023; 21(3): 133–146.
4. Torrance N, MacIver E, Adams NN, et al. Lived experience of work and long COVID in healthcare staff. Occup Med (Lond) 2023; 74(1): 78–85.
5. Anderson E, Hunt K, Wild C, et al. Episodic disability and adjustments for work: the ‘rehabilitative work’ of returning to employment with Long Covid. Disability & Society 2024; DOI: 10.1080/09687599.2024.2331722.
6. Samper-Pardo M, Oliván-Blázquez B, Magallón-Botaya R, et al. The emotional well-being of Long COVID patients in relation to their symptoms, social support and stigmatization in social and health services: a qualitative study. BMC Psychiatry 2023; 23(1): 68.
7. Office for National Statistics. Self-reported coronavirus (COVID-19) infections and associated symptoms, England and Scotland: November 2023 to March 2024. 2024. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/articles/selfreportedcoronaviruscovid19infectionsandassociatedsymptomsenglandandscotland/november2023tomarch2024 (accessed 21 Jun 2024).
8. Woodrow M, Carey C, Ziauddeen N, et al. Systematic review of the prevalence of Long COVID. Open Forum Infect Dis 2023; 10(7): ofad233.
9. Shabnam S, Razieh C, Dambha-Miller H, et al. Socioeconomic inequalities of Long COVID: a retrospective population-based cohort study in the United Kingdom. J R Soc Med 2023, 116(8): 263–273.
10. Smythe N, Ridge D, Kingstone T, et al. People from ethnic minorities seeking help for Long Covid: a qualitative study. Br J Gen Pract 2024; DOI: https://doi.org/10.3399/BJGP.2023.0631.
11. Clutterbuck D, Ramasawmy M, Pantelic M, et al. Barriers to healthcare access and experiences of stigma: findings from a coproduced Long Covid case‐finding study. Health Expect 2024; 27(2): e14037.
12. Pantelic M, Ziauddeen N, Boyes M, et al. Long Covid stigma: estimating burden and validating scale in a UK-based sample. PLoS One 2022; 17(11): e0277317.
13. Kingstone T, Taylor AK, O’Donnell CA, et al. Finding the ‘right’ GP: a qualitative study of the experiences of people with long- COVID. BJGP Open 2020; DOI: https://doi.org/10.3399/bjgpopen20X101143.
14. Baz SA, Fang C, Carpentieri JD, Sheard L. ‘I don’t know what to do or where to go’. Experiences of accessing healthcare support from the perspectives of people living with Long Covid and healthcare professionals: a qualitative study in Bradford, UK. Health Expect 2023; 26(1): 542–554.
15. Turk F, Sweetman J, Chew-Graham CA, et al. Accessing care for Long Covid from the perspectives of patients and healthcare practitioners: a qualitative study. Health Expect 2024; 27(2): e14008.
16. Maclean A, Hunt K, Brown A, et al. Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: validated, diverted and rejected candidacy. SSM Qual Res Health 2023; 3: 100207.
17. PoTS UK. PoTS on a page — GP guide. 2023. https://www.potsuk.org/wp-content/uploads/2023/10/PoTS-On-A-Page-1.pdf (accessed 21 Jun 2024).
18. Family of Occupational Medicine of the Royal College of Physicians. Guidance for healthcare professionals on return to work for patients with long-COVID. https://www.fom.ac.uk/wp-content/uploads/longCOVID_guidance_04_small.pdf (accessed 21 Jun 2024).
19. Health and Social Care Alliance Scotland. Accessing Long Covid services in Scotland: to be believed, listened to, and supported. 2024. https://www.alliance-scotland.org.uk/blog/news/accessing-long-covid-services-in-scotland-to-be-believed-listened-to-and-supported (accessed 21 Jun 2024).
20. Kingston University London. LISTEN: co-designing and evaluating personalised self-management support for long Covid. https://www.kingston.ac.uk/research/research-showcase/research-case-studies/listen-long-covid (accessed 21 Jun 2024).

Featured photo by Heike Trautmann on Unsplash.

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