The vital need for early rehabilitation is a key finding emerging from the operation of a post Covid recovery clinic that opened in Dublin's Beaumont Hospital just after the first wave of the pandemic.
Everybody who had been hospitalised there with the illness was called back after three months.
We didn't know what to expect, says respiratory consultant Dr Killian Hurley, but they believed specialists in respiratory and infectious diseases, and from the intensive care and psychiatry departments should work together, as well as a full rehabilitation team, including a physio, to cover all bases. They are about to publish a research paper analysing data on the 300-plus patients they saw from that first wave.
“It is a truly multi-organ disease,” says Hurley. While developing pneumonia is what drives most Covid sufferers into intensive care, or necessitates treatment with oxygen on the wards, medical staff were seeing other issues afterwards.
“Some of the major problems patients had weren’t just in the lungs, they were also in the heart.”
Good thing is most people we saw at three months had recovered very well
There were incidences of new diagnoses of lung disease, of heart disease and of diabetes.
However, the “good thing is most people we saw at three months had recovered very well”, said Hurley. But they did see others who were readmitted to the hospital with continuing lung problems, breathing problems and about five per cent were diagnosed in the hospital or afterwards with blood clotting in the lung.
Fatigue is a common element for people who had Covid in the community, Hurley says.
“Shortness of breath is a big problem for patients, even young patients.”
Part of the assessment at the clinic is a six-minute walk test, during which a patient’s heart rate and oxygen are checked. This has revealed a “profound” level of deconditioning.
“We need to think about rehabilitation very early with these patients. I think that is what we learnt from the first wave.”
Using the framework of existing rehabilitation treatment for patients with chronic lung and heart conditions, we need an all-encompassing programme that involves patients’ GPs, Sláintecare hubs and the hospitals, he argues.
Use of an extensive questionnaire at the Beaumont clinic found that 30 to 40 per cent of those attending had mental health issues, such as anxiety and depression. While this could be true for anybody spending a long spell in hospital, “it is a big number of people” according to Hurley.
Although a national strategy has yet to be finalised, there is recognition of long Covid by the Department of Health, says infectious diseases consultant Dr Eoghan de Barra.
GPs will be faced with managing the bulk of long Covid cases in the community but they need routes for referring patients for diagnostic tests because some will have other things, he says. Acute hospitals need to be hubs for referrals from primary care and while some are trying to do that already with current resources, they need funding.
Rather than having patients “being referred here, there and everywhere” through lots of specialities, as is currently happening, says de Barra, the health system needs a framework whereby they will be “funnelled into a truly multidisciplinary clinic”.
While the incidence of Covid cases becoming long Covid is hard to tell at the moment, says Hurley, among the hospitalised cohort they have been seeing, about 30 per cent still have problems at three months and possibly six months later. In the community it could be one in 10 “and that is a very big number”.
His impression is that people who had a particularly high level of physical ability, such as sports people or marathon runners, seem to be “inordinately affected”. This may be because they have very high expectation of their health, having never been ill before.
That is not dissimilar to findings of persisting symptoms among patients with other infectious diseases, says de Barra.
“Type A personality predisposes them, either because they have those expectations of their functionality and they really find it hard that they were sick and it’s going to take time to get better, or the psychological overlap that might occur with that.”
Finally, Hurley stresses that even if you’re young and healthy you don’t want to get this illness in the tail end of the pandemic.
“It’s a concerning idea that people are vaccinated, let’s just let Covid rip. There are consequences to that, it’s not just numbers,” he adds
A mismatch between the severity of symptoms and the findings of clinical investigations is the characteristic feature of long Covid, says Dr Liam Townsend, a specialist registrar in infectious diseases at St James's Hospital and research fellow at Trinity College Dublin.
“If you were treating a computer you would say they’re fine, as their results look all right but the patient in front of you actually isn’t. That makes it quite difficult even from a triaging perspective.”
Long Covid remains an umbrella term for any persistent, unexplained symptom following Covid-19, he explains.
“There is no good screening tool; it is very much based on functional performance and subjective health.”
Having been the lead author of a study assessing lung function and respiratory symptoms among post Covid patients that was published last January, he stresses that it’s still very early in research terms. Just “because we haven’t found a clear smoking gun doesn’t mean there isn’t going to be one found”.
One of the remarkable things, he says, is that generally patients who were very sick with Covid and needed intensive care are doing really well.
“We’re seeing very little severe [lung] scarring in those patients.”
His study found that long Covid did not seem to relate to the initial severity of the condition and it also suggested that the highest-risk group for suffering post-Covid symptoms appeared to be females under 60 years.
The range of those affected, even after experiencing a mild infection in the community, is a difficulty for provision of services because of the unknown numbers, he points out.
People who never had a Covid diagnosis or positive test but may have had the illness, knowingly or unknowingly, now have symptoms that they may be attributing to long Covid.
“We will need a truly multidisciplinary approach,” he says, including physio and occupational therapy and clinical psychology. He refers to a recent UK study that found depression and post traumatic stress disorder were very common and again this was not related to severity of infection.
Mention of clinical psychology might make patients think the medics believe it’s all in their head, he says.
“But no that’s not the case, there are so many factors.”
The post Covid clinic at St James’s sees 20 patients on a Friday afternoon, which was the only slot free in outpatients. They’re hoping it can be expanded once funding is available.
“There is nothing I can actually give these patients except listen and reassure that this is the trajectory.”
Investigations are done to make sure they’re not missing anything, says Townsend, adding: “We are all still slowly learning”.
Read: MEP Maria Walsh's experiences of long Covid