‘What Do People With Long Covid Want From Healthcare Services?’ A Qualitative Exploration From Lived Experience, 2026, Rayner et al.

[SNT Gatchaman]

‘What Do People With Long Covid Want From Healthcare Services?’ A Qualitative Exploration From Lived Experience
Clare Rayner; Nikki Smith; Ruairidh Milne; Ghazala Mir; Johannes de Kock; Nawar Diar Bakerly

BACKGROUND
Long COVID (LC) is a chronic, multisystem condition affecting millions globally, with significant personal, social and economic consequences. Despite increasing recognition of its impact, healthcare services for LC remain inconsistent with patients frequently encountering fragmented services, scepticism and delays leading to patient-voiced frustration. Therefore, understanding patient priorities is crucial for optimising service provision.

OBJECTIVES
To explore what individuals with LC want from healthcare services—drawing on their lived experience and collaborative insights with clinicians and researchers, to inform principles for improving care delivery, barriers to access, expectations for service improvement, and the role of multidisciplinary care in managing LC.

METHODS
A qualitative study using thematic analysis was conducted, incorporating multiple data sources, including semi-structured interviews, workshops, and a patient-led audit. Key themes were identified, focusing on healthcare access, clinical assessments, treatment options, and service organisation.

STUDY PARTICIPANTS
Twenty-seven LC sufferers from the LOCOMOTION Patient Advisory Group (PAG) and Patient Advisory Network (PAN), along with clinicians and researchers involved in LC service provision across the United Kingdom, participated in the study.

RESULTS
Three major themes emerged: (1) Who the services are for: Equity of access for all those with LC. Barriers such as stigma, inequitable access and lack of clinician awareness need to be addressed. (2) What services should do: Consistent and standardised assessments and diagnostic clarity—particularly for modifiable conditions like autonomic dysfunction—and an emphasis on the need for early medical intervention, not just rehabilitation. (3) How services should operate: Care should be coordinated, proactive and adaptable to evolving evidence. Patients should not be discharged without ongoing review. Multidisciplinary collaboration should be patient-centred and informed by up-to-date research.

CONCLUSIONS
LC services should be designed to provide equitable, standardised and evidence-based care. Early intervention, appropriate medical testing and sustained follow-up are critical to improving patient outcomes. Patients emphasised the importance of being heard and the value of receiving timely care that reflects the latest scientific understanding and recognises their condition as real, treatable and deserving of ongoing clinical attention. Incorporating these insights into healthcare design may improve outcomes, service efficiency and trust between patients and providers.

PATIENT AND PUBLIC CONTRIBUTION
Patients led all phases of this study, including design, analysis and writing, through active co-production with the LOCOMOTION research team. The paper was born out of discussions within the LOCOMOTION studys Patient Advisory Group (PAG). It was taken forward by C.R., N.S. and R.M., all members of the PAG, working closely with N.B., H.d.K. and G.M.

Web | DOI | PDF | Health Expectations | Open Access

 

[SNT Gatchaman]

Some quotes —

‘Most clinics are about rehab, not investigation or treatment—frustration with that. (Though specific aspects of rehab can be very helpful)’.

‘… advice that everyone can be given whilst waiting to be seen—early pacing advice is one of the most helpful things’.

One PAG member pointed‐out ‘It is a recurring theme in patient groups that healthcare for LC lags behind the research evidence’. Another suggested ‘Education is needed so that staff are up to date on research: education influences everything assessments, investigations/tests, advice, treatments, monitoring’.

‘We want clinicians to base their diagnostic and therapeutic decisions on best available evidence, and there is now lots…Not to be paralysed by out of date evidence such as the NICE guidelines (NICE, 2021) or the lack of Randomised Control Trials. We need clinicians to be agile and fleet‐of‐foot’.

(Presumably referring to the NICE long COVID guideline)

Patients articulated a proviso about MDTs that they can sometimes be disempowering with decisions made without patient involvement. ‘This works directly against the principle of (Nothing About Me Without Me)’. In addition, ‘the term multi‐disciplinary team in my experience is often used by managers and policy makers to refer to non‐doctors. We therefore need to be careful about the term and how we use it’.

Keep under review those LC patients who have not recovered, instead of discharging them.

There was concern in our sample about the slow uptake of LC research into clinical practice. This links to the rehabilitation‐heavy approach of many LC clinics, whilst up to date evidence suggests that medical investigations and treatments also have a prime role to play. Clinical guidelines need to be updated (NICE guidelines, for instance, have had no substantive update since 2021), so that clinicians are confident to treat what is treatable.

The Scottish policy to expand LC services to include ME/CFS and related conditions underscores the relevance of our recommendations beyond LC. Principles such as patient‐led governance, proactive screening for treatable traits, and hybrid delivery models (face‐to‐face and digital) can guide sustainable frameworks for complex chronic conditions.

Our proposed model—grounded in WHO guidance for assessment and rehabilitation—offers a transferable framework that prioritises equity, diagnostic clarity, and integration of emerging evidence.

 

[Jonathan Edwards]

To me this crystallises the widespread error in what people think they want. They think they want 'Long Covid Services'. What they should really want is for Long Covid to be treated like any other real illness - in standard medical clinics.

The identification of the problems of rehab and the disempowering of a multidisciplinary team is sensible but the claim that there are medical treatments based on new research is make-believe.

Above all, there is no mention of any worthwhile intervention - because there isn't anything.

Information is import but focus on diagnostic consistency is a red herring. The focus should be on explanation of prognosis rather than diagnosis.

Rather than push for status for Long Covid as a political issue I think people just need to ask for it to be included in routine services like anything else.

 

[rvallee]

Competent health care. As they describe.

The opposite of what's been done so far. As they describe, every single time.

Incorporating these insights into healthcare design may improve outcomes, service efficiency and trust between patients and providers.

"Do your job" is not an insight. It's calling out that you haven't been doing your job. Because you have refused to do your job, preferring the giant pile of psychosomatic cocaine.

This isn't hard. Children can manage this, why can't health care systems? It's because they reject it, absolutely do not want this to happen, and they make all the decisions for us, in secret, behind closed doors.

What's even more frustrating is that this is all we've ever described, decades before LC was a thing, and it's still not happening. Because it's rejected.

No need to thematize anything or frame it any differently than any other condition. People want results. The current way of doing things does not deliver results, hence all the criticism. Because you have refused to do your job.

Or, as David Lynch said: "Okay, let's try that again, but this time good."

Rather than push for status for Long Covid as a political issue I think people just need to ask for it to be included in routine services like anything else.

Unfortunately, it has been politicized to all hell so it's not really avoidable. The whole psychosomatic project is pure politics and ideology, this is what makes it impossible to displace, so politics is always in play. In fact, there likely is no way out of this without heavy political involvement that simply overrules medical defiance at doing their job. They have held fast against it for decades, with disastrous outcomes, and everything they do makes it clear it will not change barring either this or a chance Nobel-prize-worthy breakthrough.