Long Covid: ‘A lot of people are suffering in silence, unable to return to full capacity’

When Ireland’s first online long-Covid hub was launched last September by the Irish Society of Chartered Physiotherapists (ISCP) it expressed concern that large parts of the country were not covered by long-Covid clinics. So far the hub has had 22,300 visits.

Esther Mary D’Arcy, the ISCP’s professional adviser, isn’t surprised.

With most long-Covid clinics based "naturally enough" in Dublin, there were just three others in Drogheda, Waterford and Galway, when the online service began.

D’Arcy says physiotherapists, who specialise in acute respiratory care as well as other aspects of fitness, were seeing patients who needed rehab to learn how to sit up by themselves and walk again, while others needed help to manage breathlessness. Many specialist respiratory chartered physiotherapists working on the frontline during the pandemic, have long Covid themselves, as a result of their work, according to the ISCP.

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While the HSE is drawing up a national plan, the ISCP is disappointed at the pace of progress since September with huge swathes of the country without a dedicated service still.

"Since September, clinics have opened in Letterkenny and Castlebar and that is about the extent of it," said D'Arcy. By contrast every one of the 32 boroughs in London has a long-Covid clinic, she pointed out. The advantage of having a dedicated clinic, for a syndrome with 200 associated symptoms, is that a patient's needs are assessed and "no one gets lost in the system", she added.

With many estimating that one in 10 people with Covid-19 develop long Covid, "the great unknown" according to Prof Seamus Linnane who set up a long-Covid clinic in the Beacon Hospital, is whether that trend will continue with Omicron, a variant not associated with high hospital or ICU admission rates.

Describing himself as “an optimist by nature” Prof Linnane is aware that many of those coping with long Covid, did have a mild infection initially.

“That is the worry about Omicron and that is the great unknown,” he said.

With more than 1.2 million cases of Covid-19 recorded in Ireland, D'Arcy says that 120,000 potential cases of "a complex, episodic unpredictable" condition such as long Covid, is a frightening scenario.

“If we suddenly have 10 per cent of over one million people needing a clinic, I do not know how one goes about that,” said Prof Linnane. “Because as it is we are struggling to provide the non-Covid care.”

The impact of Omicron on long-Covid numbers may be evident soon, given it is almost 12 weeks since the first Irish cases of the variant were detected.

The widely accepted definition of long Covid is when symptoms persist longer than 12 weeks after infection, and are not attributable to an alternative diagnosis.

A HSE draft report dated June 2021 outlining its proposed response to long Covid, detailed plans for six clinics, at four acute hospitals in Dublin and also at University Hospital Limerick and Cork University Hospital, at a cost of almost €3.2 million. Plans for seven "post-acute Covid-19 clinics" (where symptoms persist for from four to 12 weeks after acute infection) costing almost €3.1 million were also detailed.

The report also stressed the need for a retrospective cohort study to assess the prevalence of long Covid in Ireland and plan for service provision. The total cost of the plan was almost €6.7 million.

The HSE told The Irish Times that funding had been provided to progress the further implementation of post-acute and long-Covid services.

Asked where services were now located, the HSE spokeswoman said clinics had been set up “in some acute sites across the country” but did not specify where.

Someone has been recruited to lead its long-Covid plan.

Prof Linnane continues to see patients from all over the country, an indication that many outside Dublin have no long-Covid clinic in their catchment area, and that many sufferers are finding it hard to access services in the public health system.

With reports of 200 long-Covid symptoms, Prof Linnane says he and colleagues have come across 60 “reasonably commonly”.

These are mostly respiratory, neurological, or fatigue presentations. “You do see different patterns and what works for one person might not work for others,” he said.

The HSE report recommended a “three-pillar approach” to dealing with long Covid, incorporating “patient-led rehabilitation” as well as primary care and also specialist input.

Many of those attending the clinic in the Beacon Hospital had been managing their symptoms at home, having never been hospitalised with the disease. Prof Linnane said this is hardly surprising given those who required hospitalisation and intensive care during initial infection, are likely to be followed up within the hospital system post-discharge.

Hopeful

Dr Liam Townsend who helped set up a Covid clinic in St James's Hospital believes numbers there may be "tailing off" in terms of new patients. But that may be because only patients or staff who tested positive in St James's can attend, he added.

The specialist registrar in infectious diseases believes individual hospitals are realising “there is a cohort of patients that have an unmet need and they are trying to meet that need within their own hospital plan”.

On the impact of Omicron, long term he is hopeful.

“It is obviously too early to say [if it will mean a surge in long Covid]. If we were optimistic we would hope that given there has been a reduction in disease severity, especially in those vaccinated, there may be an associated reduction in longer-term symptoms. We don’t know”.

He says the uncertainty is partly caused by a lack of clarity about what causes long Covid. “If it is an abnormal immune response then a less severe immune response in the initial disease might mean that there is a lesser burden longer term, but it’s very much a case of wait and see”.

Dr Townsend is excited by ongoing research about long Covid and abnormal blood clotting.

“We may well find a breakthrough there,” he said. “Whether or not there is a treatment for it is a separate question but finding the cause is the biggest step to finding the treatment.”

There are 'way more people with long Covid than we realise'

Like Prof Linnane, Dr Townsend is positive about the outlook for long-Covid patients.

“Very often I say to patients it is not that I think you are 100 per cent fit but I am not sure of the value of a repeat appointment.”

Asked if he assures patients they will get better, Prof Linnane said: “I tell people they will improve which is my experience, having watched people go through the process. Neither myself nor the patient knows if that will be a complete return to their previous activities or a reasonable re-engagement with the types of things they were doing before they got infected.”

While he says the proportion of positive cases who develop long Covid is “a moving target” the reassuring thing for patients is that the ratio drops, the further you get from initial infection.

“I tell patients that let’s say the figure is 30 per cent at three months, and 15 per cent at six months, and five per cent at 12 months, the further you are away, the more likely you are to improve. That’s really important for people to hang on to.”

Having said that he is still seeing people who had their infection in early 2020. The consultants says that knowing they are “believed” is important for the patients’ recovery. “I get a lot of feedback from people who say during consultations ‘it’s great that you are taking my symptoms on board and you believe what I have gone through’. I think from a therapeutic point of view, by acknowledging somebody’s distress, you can characterise it and start to address it”.

‘Full capacity’

Monaghan-based GP Illona Duffy believes there are "way more people with long Covid than we realise".

She said symptoms such as fatigue and breathlessness can be so vague that patients are not sure if they are related to Covid-19. “Eventually they begin to wonder if it could be long Covid.

“I do sense a lot of people are suffering in silence. They are not able to return to full capacity.

“It is difficult. And as clinicians we still do not know that much about it.”

She believes a lot of people are seeking treatment privately because they feel they have no choice.

Prof Linnane believes people have become very tired, rather than complacent about Covid-19. “I think people have done a lot and put up with a lot. And I think when Omicron was described as a milder form, people took their foot off the gas, a normal response from a besieged population.”

He says it’s important to acknowledge that despite the plethora of symptoms there has been some progress. He and colleagues have, for example, established a link between weakness of muscles used for breathing, especially the diaphragm, and other symptoms. When the muscles weaken, alternate muscles are used “which causes breathlessness, chest pains, dizziness and anxiety”. Part of the rehabilitation programme for these patients involves retraining breathing muscles and rebuilding diaphragm strength which has resulted in “significant” improvements.

Many long-Covid patients worry about what a second infection would mean for them.

Prof Linnane says the numbers he has come across are too small to speculate on whether long Covid will be prolonged as a result.

“We don’t know but a pragmatic approach if you have long Covid is to stay up to date with your immunisations because you don’t want to go back and roll the dice again.”