Most people vulnerable to long Covid have already had it, says top NHS adviser

Most people who are going to get long Covid have probably already got it, the NHS’s top adviser on the condition has told i.

Melissa Heightman, national specialty adviser for long Covid for NHS England, said a first Covid infection is much more likely to lead to long Covid than subsequent infections and the vast majority of people have had the virus at least once.

However, in an interview with i, she warned that even if 1 per cent of the winter wave of infections develop long Covid it would lead to a “significant number” of new cases – estimated at around 100,000 by experts.

It comes as the NHS looks to tackle a treatment backlog through a network of more than 100 specialist clinics across the country. Around 1.5 million people are believed to have long Covid – about 350,000 of whom report that it significantly limits their ability to undertake their day-to-day activities.

Meanwhile, specialist clinics have seen more than 100,000 people so far.

Dr Heightman, who in May 2020 set up the country’s first long Covid clinic at University College Hospital in London, believes long Covid care is improving and latest NHS figures show that 58 per cent of long Covid patients were seen within six weeks of a referral from a GP and 70 per cent within eight weeks.

She said: “We started with a large number of patients needing to be seen.

“I think we’ve caught up – our waiting times for the clinic are now hugely better than they were, so many clinics are now able to have a first appointment within six weeks.

“We didn’t feel that we had enough capacity at the start – we felt overwhelmed by the number of people needing help. So that’s improved a lot.”

The NHS says that when it first started reporting waiting times, between 30 per cent and 40 per cent of patients were typically seen within six weeks during the initial peaks.

Dr Heightman said the rate of new long Covid cases has slowed dramatically as people become less likely to develop the condition after a first Covid infection, helping the NHS get to grips with existing cases.

Asked whether most people that are going to get long Covid have already got – or had – she said: “I think that’s right.

“The most powerful trigger of long Covid was the early variant types at a time when the population weren’t vaccinated, I think that’s when most people contracted long Covid.

“Of course there will be new cases. But it’s not at the same really high rate that we saw early in the pandemic.

“In that first infection, you’re unique immune makeup declares itself. Are you the type of person that is going to get long Covid or are you not? And the person doesn’t change with each subsequent infection.

“It’s nearly always from their first exposure to the virus.”

“I think that infection rates have been so high in the UK and the vast majority of the population have now had that immune stimulus that I think the people who are most vulnerable to developing long Covid have probably contracted it by this point.

“So I do feel optimistic for the future that we won’t see the same rates of people developing this complication of the virus as we did. The protective effect of the vaccination is likely to continue for a number of years.

“But there are always uncertainties. We don’t know whether there might be a future variant that may have a greater long Covid risk and we don’t know how long the protective effect from vaccination will last.”

While the NHS is clearly helping many people with long Covid there is much more it could be doing, says Binita Kane, a consultant respiratory physician for the NHS in Manchester, who has treated many long Covid patients.

“Another way to look at this is that 30 per cent of patients are still waiting longer than two months to be seen for their first appointment.

“And that first step is usually a ‘triage’ appointment, often via telephone, with a nurse. So in terms of accessing ‘specialist help’ or any treatment for the condition, it is usually a lot longer, with current waiting lists often several months,” she said.

She says there is a lack of people with a specialist ‘holistic’ – whole body – understanding of long Covid in clinics, which can greatly increase the amount of time it takes to get the right treatment, as patients are passed from one single-organ specialist, to another.

“So we end up people under multiple different specialists with no one co-ordinating or overseeing the person as a ‘whole’,” said Dr Dr Kane, who is also an advisor to World Health Network, a global group set up to protect people from long Covid, and who sat on the Independent Sage panel of Covid scientists.

She adds: “Often by the time a long Covid patient gets to me they will have seen by a number of people – for example their GP, a cardiologist, a respiratory doctor, a gastroenterologist, and an immunologist over months and months – and they’ve had all these different investigations done, but not had any actual treatment as tests often come back reported as ‘normal’.”

Former PM Boris Johnson wasn’t convinced that long Covid truly existed in 2020 and for a large part of 2021, the Covid inquiry heard (Photo: Justin Tallis/AP)

Dr Kane says this is by no means the case for every clinic or patient experience she is aware of but argues that the service can be “very variable”, often depending how much specialist long Covid knowledge a doctor has had the time to accumulate.

She adds that, based on what she’s seen and heard, many long Covid patients face the same kind of issues in Scotland and Wales – which have around 187,000 and 72,000 cases of the syndrome, respectively, based on the most recent estimates.

Manoj Sivan, a clinical academic who runs a long Covid clinic in Leeds, agrees that the standard of long Covid care can be “quite variable” and that “there are not enough doctors” in them due to the pressure they are already under with their existing roles.

But he says a the scale of the long Covid clinic network in England, given the size of the population, is unique.

“I don’t think any other service or country has invested so heavily on dedicated, specialist services for the condition. That is quite unique here. We can take credit for that.”

“Overall, from a clinician’s point of view, I would say the care is good but not brilliant.”

Dr Heightman says she “completely agrees” that long Covid patients needs are best served by a long Covid specialist, who can take a holistic view of a case.

She says the NHS long Covid clinics are designed to provide care that “brings together the workforce with the right expertise and skillset around the patient” – and that there are plans to step up this level of ‘integrated care’.

“It is not good for somebody with long Covid to be passed around to lots of different specialty clinics where they might not have the breadth of experience of this new disease.

“Within my clinic we have physicians from a number of backgrounds – respiratory, cardiology, neurology, endocrinology.

“I can access rheumatology, infectious diseases, all the ologies. And even more importantly we have the mix of therapists and psychologists and occupational therapists to design the kind of rehabilitation package and support the patients.

“And we’re now forming a new UK clinical society to really strengthen this new field and bring together the people who’ve been growing their expertise in this condition so we can further support the workforce in providing an expert opinion and a consistent approach.

“I think that’s going to be a really important next stage for the evolution of this new clinical field.”

Part of the difficulty of treating patients is that so little is known about how best to treat long Covid because it is still so new.

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Dr Kane would also like to see a handful of existing treatments for other conditions, that are offered for long Covid in countries such as Germany, being made available in the UK.

But Dr Heightman wants the benefits of these drugs to be clinically proven first, in trials she is currently overseeing, that are expected to report their findings later this year.

These include repurposed medicines such as antihistamines, anti-inflammatory and anti-coagulation drugs – “medicines chosen because they had been used in smaller numbers of patients with long Covid with apparent benefit in some people,” she said.

A Department of Health and Social Care spokesperson said: “Long Covid can have a debilitating impact on people’s physical and mental health and we are backing our world-leading scientists with over £50 million to better understand it and identify new treatments.

“NHS England has also invested £314m to expand treatment and rehabilitation services, establishing 100 long Covid services for adults and 13 specialist hubs for children and young people.”

A Welsh Government spokesperson said: “A large number of people continue to suffer from the long-term impacts of a Covid-19 infection and continuing to support them remains a priority.

“All Health Boards in Wales are providing an individual, tailored approach to supporting and treating people with long-Covid through Adferiad (Recovery) services.”

There are no long Covid-specific clinics in Wales, which is instead supporting people with through its Adferiad (Recovery) programme, which is care out through GPs and primary care clinicians.

In Scotland, there are some long Covid clinics as part of care for people with the syndrome.

Scotland’s Public Health Minister Jenni Minto said: “We take the issue of long Covid very seriously and recognise the impact it can have on the health and wellbeing of those most severely affected. Assessment and support is being provided across Scotland.

“UK-wide clinical guidance, developed by the National Institute for Heath and Care Excellence (Nice), the Scottish Intercollegiate Guidelines Network (Sign) and the Royal College of GPs, notes that ‘one model would not fit all areas’. Rather than mandating one single model, we are giving NHS boards the flexibility to design and deliver the best models of care tailored to the specific needs of their populations”.

“Initiatives being supported by Scottish Government funding include key elements of care that are also offered by long Covid assessment clinics elsewhere in the UK, including single point of access for assessment and co-ordinated support from services including physiotherapy and occupational therapy.”

How many people in the UK currently have long Covid?

The precise number of people in the UK with long Covid is far from clear but is thought to be somewhere in the region of 1.5 million.

At the time of the last ONS estimate, in March 2023, 1.7 million people had long Covid – defined as having had symptoms for three months or more.

Of those, 69 per cent, or 1.3 million, had had long Covid for at least a year and 41 per cent (762,000) for at least two years.

The lingering nature of the condition means that, despite a significant drop in new cases as the pandemic continues, the total number currently suffering from the syndrome is unlikely to be much lower than it was nine months ago and could even be the same, according to Dr Heightman.

“It’s either static or lower,” she believes.

Accurate statistics on the suffering caused by long Covid are thin on the ground because there is no definitive diagnostic test – the syndrome has 255 recorded symptoms affecting every organ in the body, making it hard to pin down. At the same time, the ONS hasn’t made an estimate of its prevalence for more than a year.