At the coalface of Ireland’s long Covid care

The need for long Covid assessment and care continues to outstrip capacity. Catherine Reilly spoke to clinicians about the current situation.

A number of public post-acute and long Covid clinics are operational, but not “fully”, Dr Siobhán Ní Bhriain, HSE National Clinical Director for Integrated Care, told the Oireachtas health committee on 12 October. She said full operationality of the clinics, under the long Covid interim model of care, was “dependent on recruitment”. 

The interim model of care, launched in September 2021, recommended the development of eight post-acute and six long Covid clinics. Some clinics had already been established in response to local population needs using existing resources. 

According to the HSE model, post-acute Covid clinics are intended to provide assessment and care for patients within 12 weeks of infection and long Covid clinics will provide assessment and care for patients with prolonged symptoms for more than 12 weeks after initial onset of infection. 

A HSE spokesperson told the Medical Independent (MI) that long Covid clinics were operational at Beaumont Hospital and St Vincent’s University Hospital (SVUH) in Dublin, while Galway University Hospital, Tallaght University Hospital (TUH) and St James’s Hospital, Dublin, were operating combined post-acute and long Covid clinics. 

Post-acute clinics were in operation at the Mater Misericordiae University Hospital, Dublin, and Connolly Hospital, Blanchardstown. However, patients at Cork University Hospital, University Hospital Limerick and Letterkenny University Hospital were “being seen through infectious disease and respiratory clinics”. 

Patient advocacy groups have highlighted long waiting times and insufficient geographical coverage. 

According to the HSE, the distribution of specialist centres for the clinics was “based on access to diagnostics and coverage of current respiratory, infectious disease and neurology expertise”. 

“There is an agile approach to implementation, clinics may be adapted and expanded based on learning from national and international research and practice. It should also be noted that clinics are endeavouring to provide virtual triage and follow-up where possible, in order to reach patients from all geographical locations.” 

In relation to the management of long Covid in general practice, including when and how to refer patients to specialist services, the HSE said it was liaising with the ICGP regarding how training and education can be “optimally designed and delivered.” 

Some €6.6 million (the costing of the model of care) has been approved by the Department of Health and will be available for 2023, according to the Executive. 

Prevalence 

Current indications are that 10-20 per cent of people experience “lingering symptoms for weeks to months following acute SARS-CoV-2 infection”, Dr Ní Bhriain told the recent Oireachtas health committee meeting. 

She said the HSE was conducting an epidemiological survey to estimate the prevalence of long Covid in the Irish population and risk factors for developing the condition. “The epidemiology survey is currently in phase one, this involves testing the overall design of the study and the survey instrument itself. It also involves recruitment of the relevant staff required for this study,” the HSE informed MI. 

The HSE has commissioned HIQA to review international clinical guidelines and long Covid care models (HIQA anticipates publication in November/December). 

In 2023, the HSE is also planning to test the development of a patient registry at pilot sites, with the intention of expanding this registry to other sites if successful. A funding application under Sláintecare is currently being prepared in this regard. A patient register would provide “a better understanding of the clinical presentation of patients attending long Covid clinics, their risk factor profile and their response to treatment, including patient-specific outcomes”. 

The mechanisms behind the development of long Covid are not yet understood and there are currently no evidence-based treatments specifically for the condition. While vaccination is proven to significantly reduce hospitalisations and severe Covid-19 disease, it is unclear whether it reduces the risk of long Covid. A systematic review, published in The Lancet in August, found that a low level of evidence (grade III, case-controls, cohort studies) suggested vaccination before infection could reduce the risk of subsequent long Covid. 

An insight into the scale of the long Covid challenge can be gauged by UK data. Its office of national statistics (ONS) releases monthly estimates of the prevalence of self-reported long Covid (defined as symptoms continuing for more than four weeks after the first confirmed or suspected Covid-19 infection, which are not explained by other causes). 

In September an estimated 2.3 million people, or 3.5 per cent of the population, were experiencing self-reported long Covid. 

Of these people, 405,000 (21 per cent) first had (or suspected they had) Covid-19 less than 12 weeks previously; 1.4 million people (74 per cent) at least 12 weeks previously; 807,000 (41 per cent) at least one year previously; and 403,000 (21 per cent) at least two years previously. 

Symptoms adversely affected the daily activities of 1.6 million people (72 per cent). Some 342,000 (15 per cent) reported that their ability to undertake daily activities had been “limited a lot”. 

Fatigue continued to be the most common symptom reported (69 per cent) followed by difficulty concentrating (45 per cent), shortness of breath (42 per cent), and muscle ache (40 per cent). 

If the ONS percentage is applied to Ireland, more than 178,000 people in this country currently have long Covid. 

SVUH 

The long Covid clinic in SVUH is experiencing high demand. During the summer the waiting time peaked at six months, but the team has managed to reduce this timeframe to four-to-five months, outlined Clinical Lead and Consultant in Infectious Diseases, Dr Stefano Savinelli. 

“Still, the first available appointment here even for urgent referrals is not less than four-to-eight weeks unfortunately, given the volume of referrals,” he told MI. 

Under the interim model of care, SVUH has received funding for a full-time consultant (Dr Savinelli), a registrar in infectious diseases, a full-time senior clinical physiotherapist (in recruitment), and a full-time senior clinical psychologist. 

The service began in April 2020 as a follow-up clinic for patients discharged from SVUH. It then began receiving referrals of people who had never been hospitalised but were experiencing persistent symptoms following SARS-CoV-2 infection. 

Over time, it increasingly received referrals from the community, GPs, and other specialties. “So we had to re-arrange our approach and we started getting other professionals on board, especially physiotherapy, occupational therapy, and psychology in our centre, and we started to develop the model of care around that.” 

The clinic had seen more than 800 patients as of July 2022 and has since received approximately 40-to-60 new referrals per month. 

On the evaluation of patients, Dr Savinelli noted: “First of all we offer a complete medical assessment. Our first goal is to rule-out the presence of other comorbidities…. “There might be something the infection triggered, for example a deterioration in blood pressure control, alterations in thyroid function, or other abnormalities, so we try to exclude them first… the long Covid diagnosis will eventually be a diagnosis of exclusion.” 

The clinic takes a “holistic approach” with a personalised care plan for each patient and it has produced a booklet on self-management of symptoms. “So far we have been offering psychological support, physiotherapy support for rehabilitation, and then a number of self-management strategies….” 

Medications may be prescribed with the aim of symptom relief and management (eg, medications well-established in treatment of chronic fatigue syndrome or fibromyalgia if there are long Covid symptoms of fatigue and/or chronic pain). 

In regard to access to neurology input, Dr Savinelli said neurology colleagues at SVUH had made “a huge effort to try and facilitate review of our patients”. However, he acknowledged that neurology services were majorly under-resourced nationwide. 

The interim model of care committed to the development of a “tertiary referral neurocognitive clinic” for people with “complex neurocognitive/neuropsychological symptoms”. This service has recently commenced at St James’s Hospital, Dublin. 

Dr Savinelli said most people are recovering from long Covid. “We do have a few patients that we are still following from March or April 2020… in some of those patients we were able to identify other causes of symptoms and they were diagnosed with other diseases, including autoimmune conditions, or metabolic complications. But in other patients it is very hard to explain what is actually going on and that is very frustrating both for the patients and for ourselves. 

“But the vast majority of our patients do recover with time – it is hard to tell whether they are recovering as a consequence of the interventions that were implemented, or whether it is just a matter of time in their recovery.” 

But in other patients it is very hard to explain what is actually going on 

SVUH is also very active in long Covid research, which has so far mainly focused on identifying the different patterns of long Covid. There is also research ongoing to identify specific patterns of inflammation or alteration in specific biomarkers and immune markers in people with long Covid, and research focusing on autonomic dysfunction in people with long Covid. 

On optimising care nationally, Dr Savinelli commented: “As always, the main problem is staffing and resources allocated to the centres. The clinical programme and HSE have done a lot of work so far, but I think going forward the model should be more in line with what is already being done, for example, in the UK where the model of care involves multiple professional figures including not only physiotherapy, but also the primary role of occupational therapy, speech and language therapy, psychology, and medical social workers, all working together in a multidisciplinary approach to the patient. And then, of course, getting support from other specialties in the management of people who might require review.” 

TUH 

The level of patient need is considerable, outlined Prof Seamas Donnelly, Consultant Respiratory Physician at TUH, where he leads the post-acute and long Covid service. The service has seen over 1,200 patients since it was established approximately 16 months ago. The current waiting time is five months (if a referrer considers that a patient requires higher priority, it aims to accommodate them on a cancellation basis). 

The TUH service provides investigations to rule-out other potential causes of symptoms. Services for people with long Covid include occupational therapy, clinical psychology, physiotherapy, dietary, nursing, and medical support. It links with other specialties, such as cardiology and neurology, where required. 

To date, over 60 per cent of patients have had predominantly brain-related symptoms and 30-to-35 per cent respiratory issues/ shortness of breath as their main symptoms. The majority of cases are female in the 25-to- 45 age group, although long Covid can occur at any age and affect both sexes. 

Prof Donnelly also reported that most people are recovering from long Covid. However, there is a subset experiencing persistent, debilitating symptoms. 

TUH is involved in research seeking to discover more about the genesis of the condition. It is part of a multi-country European collaboration called Orchestra, which is following patients with long Covid. Prof Donnelly said this collaboration is seeking to identify the underlying mechanisms of the condition. “And once you identify the mechanisms, you then target those mechanisms and reverse them, pharmacologically or in other ways.” 

Reflecting on the extent of the challenge nationally, Prof Donnelly firstly acknowledged that the HSE had provided funding to roll-out the interim model of care (according to a TUH spokesperson, in March 2022 the hospital “received permanent funding” of €288,851 for the “post-acute Covid clinic”). 

However, he suggested the HSE had not realised the potential scale of the issue when the model was devised. 

“There is a high-level working group with the HSE putting together an updated national strategy and obviously there will have to be more centres, there will have to be more resources, and we await the publication of that working group report, which should be at the end of the year or early next year.” 

Beacon 

A considerable number of patients are also presenting to private hospitals. 

Prof Seamus Linnane, Consultant Respiratory Physician at the Beacon Hospital in Dublin, said presentations to date would be “in the high hundreds”. The hospital’s post-Covid clinic, which is led by Prof Linnane, was established in early 2021. Currently, access to an appointment can take “several months” (referrers can contact the clinic to discuss a patient being prioritised). “We are getting large numbers of daily referrals and we are doing our best to manage that and see those patients,” said Prof Linnane. 

“I think it is seen across all of the various formats and clinics that have been set up to address this problem – the numbers are so enormous that it is difficult to be able to put in place enough clinics to see people in a shorter timeframe. So we got three consultants involved from early on, and even with three consultants the numbers are just enormous.” 

On what may be achieved for patients, Prof Linnane firstly noted that the clinic has found other identifiable causes for symptoms in numerous cases, “and it is important those pathologies are dealt with.” 

“You are then left with symptoms which are otherwise medically unexplainable and you are managing them in a supportive environment… that means, if using medication therapies, using medication regimens with a high benefit/low harm ratio. We lean heavily on the concept of rehabilitation. 

“Until there is a good evidence-based medical or pharmaceutical intervention, then a supportive care approach and a rehabilitative approach is what we have left, and we know that that helps in other chronic conditions.” 

The clinic operates a six-week programme which is physiotherapy-run with inputs from occupational therapy, psychology, and dietetics. 

Patients have been reporting benefits and improvements when they return to clinic. “We do know time has an enormous beneficial role in this syndrome and patients improve over time…. So either through the application of support or the application of time, patients certainly improve over their six, 12, 18 months. The length of time is variable.” 

There are, however, some people “who continue to struggle” at the two-year mark. 

“We don’t know yet what happens in the very small percentage of patients with persistent or recalcitrant symptoms,” noted Prof Linnane, who confirmed the Beacon service is also actively involved in long Covid research projects. 

Looking at the national picture, Prof Linnane believes the development of a shared care model between secondary and primary healthcare may be the best way forward and provide better outcomes for patients. 

Unproven treatments 

A clinical article that Prof Linnane co-authored in MI (‘Long Covid: Navigating uncharted waters’, December 2021) stated that “patients are sometimes desperate for help and need guidance on the weight of evidence behind any proposed intervention or scientific merit of an unproven approach”. 

Prof Linnane said that, internationally, some of the hypotheses for the underlying mechanisms of long Covid have developed into unproven treatment-based approaches. 

These unproven approaches include aggressive anticoagulation regimens, immunotherapy, and high-dose steroid regimens, all of which lack an evidence base for long Covid treatment and may have potentially serious side-effects. 

Prof Linnane said the clinic has had patients who have been recommended high-dose anticoagulation and immunotherapy regimens abroad. “They have come to us and asked for our opinion and we have not supported [these regimens].” 

“Certainly, we would be very nervous about the very high-dose anticoagulation regimens that are recommended internationally, and it seems to be more an international issue for the anticoagulation regimen.” He said a triple drug anticoagulation regimen is of proven benefit for well-defined cardiovascular conditions, but equally has a well-described adverse haemorrhage rate per year, which is an unacceptable risk for a relatively young cohort in the absence of supportive data. 

Dr Savinelli also expressed concern to MI about some of the unproven treatment approaches. He said he had heard of at least one private healthcare setting in Ireland prescribing anti-inflammatory agents for long Covid, including corticosteroids and tocilizumab. 

“There is absolutely no evidence supporting their use in clinical practice for long Covid, and they could be associated with important side-effects.” 

He was also aware of a patient having travelled to the US to obtain Paxlovid for long Covid treatment despite no evidence for its use in this indication and significant potential side-effects (Paxlovid is an oral antiviral medicine for the treatment of Covid-19 infection in adults who are at increased risk of progressing to severe Covid-19). 

The most concerning issue was prescription of anticoagulants and antiplatelet agents for long Covid. Dr Savinelli said there was “absolutely zero evidence” for their use in long Covid and the potential risks were “substantial” due to risk of life-threatening haemorrhage events. 

Dr Savinelli said he was aware of a patient who had travelled to Germany where they were prescribed a combination of two different anti-platelet agents and one anticoagulant for eight weeks of treatment. “I haven’t heard of anticoagulants being used in Ireland so far,” he added. 

There are also some doctors referring patients for hyperbaric therapy. “This is only provided in the private sector in Ireland and it is extremely expensive and it is unjustified and possibly unethical to refer patients for an expensive treatment when there is very little evidence supporting its use in clinical practice.”

**In regard to hyperbaric oxygen therapy, Prof Linnane said the evidence was limited as with all current treatment options for long Covid. 

“This poses a challenge for treating teams who endeavour to do the best for their patients. It is important that uncertainties where they exist are shared with the patient including potential downsides.” He said the Beacon’s long Covid clinic has referred a small number of patients for hyperbaric oxygen therapy.

“For hyperbaric therapy the available data is encouraging enough to permit such discussions. The treatment does carry a cost and this is an important factor for patients…. Our experience with hyperbaric therapy is limited to a handful of patients who have usually researched this option themselves and is therefore anecdotal. I can say that those anecdotal reports have been positive. There are insufficient numbers to draw any robust conclusions.”

“I don’t see any ethical dilemmas posed by referrals from our clinics for hyperbaric therapy and would very robustly defend the ethical and patient-centred philosophy of our service.”

He added: “We have compiled data on reductions in inspiratory muscle function which is a focus for breathing training in our rehab programme. We presented this data as a poster at the European Respiratory Society in September. We have also compiled outcome measures following rehab and hope to present that data later this year.”

**These comments on hyperbaric oxygen therapy were added on 10 January 2023 to provide further context.