‘People are screaming out for help’ as long Covid cases rise

Between 10% and 20% of Covid patients struggle for months after diagnosis but there is no central hub for medical support and campaigners are warning that delays in accessing care are causing even more problems
‘People are screaming out for help’ as long Covid cases rise

Miriam Cullen was diagnosed with Covid-19 in March 2020 and is still receiving treatment at St James’s Hospital in Dublin. She is campaigning for better funding for long Covid clinics especially for Occupational Therapy. Picture: Moya Nolan

Access to long Covid supports for adults is growing but advocates are calling for this to be done more quickly and equitably around the country especially outside the major cities.

A common obstacle facing patients is where to get help as there is no central hub for long Covid supports, so although help is more widely available now, patients’ lived experience is often frustration.

This seems especially the case for adults with more severe symptoms as a gap is developing between people who can have their symptoms managed in the community and people waiting for more specialised help.

International analysis indicates 10% to 20% of Covid cases struggle for months, or less commonly for years, after infection with large-scale studies indicating there could be as many as 200 symptoms.

In Ireland, it has been estimated this could mean as many as more than 336,000 people based just on Covid results from PCR testing. Faced with these numbers Long Covid Ireland, a patient support group with over 3,000 members on Facebook, are calling for a HSE model of care, published last year, to be more swiftly implemented.

One of their patient spokespeople Miriam Cullen has struggled with chronic fatigue, and heart problems since a Covid infection in March 2020. She also has functional neurological disorder (FND), which affects her nervous system and has left her unable to return to work.

“Delays in accessing unified care are detrimental both physically and mentally,” she said in a statement on behalf of the group.

“Surely all sufferers of long Covid should have appropriate medical care available in their counties. As one of the many symptoms of long Covid is debilitating fatigue, sufferers will not be able to travel to a clinic hundreds of miles away from home.” 

Most people with a Covid infection do not need hospital care for the initial infection, but the World Health Organization has repeatedly stressed that even mild infections can lead to Long Covid.

“Many members of Long Covid Ireland have post-Covid-fibromyalgia, neurological, cognitive and cardiac issues. Moreover, even the slightest physical or cognitive exertion can lead to debilitating post-exertional malaise,” she said.

Unless patients are given the correct medical advice in a timely manner, they may not realise that their efforts to return to physical exercise or to work too soon are likely to cause them extra damage in the longer term.

The HSE’s plan is to build supporting community healthcare and then two types of clinic, including six sites for long Covid patients, defined (by the World Health Organization) as people who are still ill 12 weeks or more after infection. There will be eight ‘post-acute’ clinics for people who suffer symptoms for up to 12 weeks.

It is understood that in many hospitals, infectious diseases consultants and specialists in respiratory or other areas have already taken matters into their own hands to treat patients without waiting for this system to start running.

A spokesman for University of Limerick Hospital Group said a working group has been set up to oversee the development of the clinics.

“A consultant has been identified to lead out on the implementation of these clinics and a number of additional resources will also be required,” he said. “These posts are currently at the early stages of the recruitment process. We look forward to commencing these clinics later this year.” 

The South/SouthWest Hospital Group which covers the rest of Munster did not respond to queries. However, it is understood patients have been receiving informal supports as needed for long Covid already, and are being treated through the infectious disease clinics at the two Cork hospitals in this group.

Ms Cullen points out even when the HSE clinics are established, Cork and Limerick will offer the only clinics for all of Munster. There will be no clinics for any county between Dublin and Cork, or in the west between Galway and Letterkenny with the Midlands completely blank under the plan.

“How many thousands of sufferers from surrounding counties will be ahead of you on a waiting list for your nearest clinic?” she asked. “Why are members of Long Covid Ireland who have been chronically ill for over two years still having to campaign for multi-disciplinary clinics nationwide?” 

Symptoms

Chronic fatigue is a common symptom, and group members have said this can stop them seeking help for potentially more serious symptoms.

Professor Jack Lambert, consultant in infectious diseases at the Mater Hospital, is increasingly concerned at the serious symptoms including long-term neurological issues his team is seeing among adults with long Covid.

Based on his experience, the emphasis on respiratory problems is not relevant for all patients, and he is seeing a larger proportion of the ‘long-haulers’ suffering with cognitive and neurological problems.

“They continue to miss the fact we don’t need ‘post acute’,” he said referring to the HSE’s Model of Care. 

“They have funded eight respiratory centres to the tune of €2m, and they have provided tertiary support for neurology, one neurologist at St James's, where 90% of the Long Covid patients need neuro rehab.” 

He added: “They have not even acknowledged the need for neuro rehab specialists.” 

However, the HSE lead for long Covid, Dr Siobhan Ni Bhriain, has a different take on this, saying what they’re seeing is the vast majority of long Covid patients do not need hospital care.

“The biggest impact is on general practice, that is where the vast majority of people are going with their post-Covid symptoms,” she said, adding they are working with GP bodies on this. “We’ve set up clinics, and we are setting up clinics for those much smaller number of people who will need specialized care.” 

Dr Siobhan Ni Bhriain, the HSE lead on long Covid said  the vast majority of Long Covid patients do not need hospital care.
Dr Siobhan Ni Bhriain, the HSE lead on long Covid said  the vast majority of Long Covid patients do not need hospital care.

Earlier this week, Independent TD Denis Naughten raised fears about the pressure on hospitals from a high number of long Covid patients, speculating they could become “overwhelmed”.

His analysis, based on Covid-19 seroprevalence results, warned of “a crisis of chronic illness” hitting hospitals.

Dr Ni Bhriain said so far they are not seeing this in hospitals, saying: “GPs are the frontline, there is some impact on the hospital system but we are setting up the clinics to manage that.”

She added: “Our biggest worry is not the effect of long Covid on the hospital system, but the effect of another wave of Covid, and the flu season that is coming up.” 

However, she agreed there are delays in opening some clinics, saying finding staff is the biggest obstacle hospitals are reporting back to her despite annual funding of €6.6m set aside.

“For 2022 we’ve got approval for about €2.2m because not all the staff are going to be in place, so we‘re not going to have that spend,” she said.

“There is huge international shortages, it is a really competitive market and we do have recruitment issues to tackle.” 

She said finding physiologists is proving the most difficult. They carry out tests across five areas; cardiac, respiratory, neurophysiology, vascular and GI (gastrointestinal).

The HSE has funded a survey to estimate how many people have long Covid here, and how many have recovered, to be carried out by the Health Protection Surveillance Centre.

“We are looking to have a more detailed understanding of long Covid, and its health, social and economic implications for Ireland,” she said.

Concerns are already being raised in the business community about the impact of having workers absent for weeks as well as the personal impact on individuals.

Hiqa (the health information and quality authority) have also been commissioned to examine international guidelines for clinical care. This is expected to be back with the HSE by November, she said.

Esther Mary D'Arcy: “People can be reassured these symptoms are not in your head, you are not imagining things.' Picture: Domnick Walsh
Esther Mary D'Arcy: “People can be reassured these symptoms are not in your head, you are not imagining things.' Picture: Domnick Walsh

In the meantime, so many patients were going to physiotherapists seeking help, the Irish Society of Chartered Physiotherapists (ISCP) created their own information hub. 

Since its launch in September 2021, the online hub has seen 10,000 unique visitors, and 800 people have downloaded a PDF-booklet with more detailed guidance. ISCP Professional Adviser, Esther Mary D’Arcy, said it is the most-visited of their advice hubs.

“There are a lot of people with long Covid who don’t know where to go,” she said. “I think that is the major issue at the moment.” 

She stressed there is more help available from non-hospital sources already than people know, but due to the lack of a central information point, patients are struggling.

“I don’t want to paint a negative picture. People should think these symptoms are treatable, it may be on a long-term management plan but advice and consultation with a physiotherapist and other members of a team is extremely important,” she said.

“People can be reassured these symptoms are not in your head, you are not imagining things.” 

She urged anyone who has developed new symptoms following a Covid infection to discuss this with community health professionals.

“While there is a geographical inequity in the national plan, I want the public to know there are some services available in other parts of the country, but they need to enquire with their local GP,” she said.

“This is why there is a real need to map the services that are available so that people with Long Covid know where they are.” She said physiotherapists working in private practice are “inundated” with requests for help.

She said:

There is a silent impact from the pandemic as well as from Long Covid. People are screaming out for help, and it is just not there.

“They’re coming for management of fatigue, management of shortness of breath. Sometimes there are cardiac conditions where there might be cardio-pulmonary rehabilitation needed. Several people have neurological symptoms as a result of Long Covid, there’s a lot of people with joint pain.” 

She acknowledged the HSE is facing a recruitment challenge, but stressed for people with more than one cluster of symptoms they need a one-stop-shop.

“Some of the clinics are looking for half-time physiotherapists,” she said. “The issue is we also have a recruitment crisis in this country for healthcare workers, and we certainly have that for physiotherapists.” 

Ms Cullen said as a Dublin-based patient she has access to a wide range of supports, so her concern and that of Long Covid Ireland, is to ensure every patient gets this same access and quickly.

“Many Long Covid Ireland members who now have reduced mobility were exceptionally active sportspeople when they contracted Covid,” she said.

“Long Covid doesn’t discriminate. It could be anyone of us tomorrow.”

Long Covid in children

The first time seven-year-old Jake O’Connell got Covid-19 last year his symptoms were so mild his parents did not even take him to see a doctor.

However, a second infection at Christmas left him with a complete change in personality and facing “a constant battle” for support including having to travel to London, his mother Sarah said.

Along with a number of physical symptoms, he has been diagnosed with PANS (Paediatric Acute Onset Neuropsychiatric Syndrome), a dramatic – sometimes overnight – onset of neuropsychiatric symptoms following an infection.

“Over the course of a week or two his personality seemed to completely change,” she said.

“He was suddenly obsessing about things, compulsions to check things with me over and over again, to have things a certain way. 

He had the most horrific insomnia, wandering around in the middle of the night, very distressed. Physically he became really aggressive.

Supported by her GP and hospitals in Dublin, she said much more needs to be done at a national level.

“It’s a constant battle to find help. Myself and my son and my husband travelled to London in July, spending €3,000 between consultations, bloods, flights, just for one night to see his doctor because we have no care for PANS here," she said. 

“The specialist GP treating his PANS has been great, but with his school and his level of absence we were told it would be good to have a consultant’s input.” 

As the Irish representative for Long Covid Kids, she is often contacted by parents confused about what to do.

“Some children have major issues, wheelchair users, nerve damage to legs, some children are entirely house-bound, it can be quite severe in many cases and I’m aware of many children who are more severely ill than my son,” she said.

“We believe some of the advice parents are getting is harmful. We are constantly fighting this myth that Covid is no big deal for children, parents

 Sarah O’Connell and her son Jake, 7, who had Covid three times and now has Long Covid. He has developed an autoimmune condition called PANS, as well as the more usual long Covid symptoms. Photo: Moya Nolan
Sarah O’Connell and her son Jake, 7, who had Covid three times and now has Long Covid. He has developed an autoimmune condition called PANS, as well as the more usual long Covid symptoms. Photo: Moya Nolan

don’t seem to understand that with each infection the risks of Long Covid increases.”

 
The HSE has said children will not be treated under a proposed Long Covid Model of Care which will see 14 clinics for ong Covid, or post-acute Covid syndrome (symptoms lasting less than 12 weeks) around the country.

HSE General Manager Primary Care, Sean McArt, said there is “a paucity” of research on long Covid in children. Their approach, he said, is based on initial reports “indicating that children recover quickly from Covid and that the incidence of long Covid was very low in these populations.”

Responding to a parliamentary query from People Before Profit TD Paul Murphy, he said: “For children and young people suspected of having long Covid, the diagnosis and care is therefore provided by GPs and general pediatricians.” However, Ms O’Connell has found this approach has left parents without a central hub of information.

“Some parents are having very difficult conversations with GPs and other medical professionals, often being told their child is stressed or anxious. Some parents are being told exercise is the key to recovery,” she said.

“I have heard from parents who are being told your child has to be in school, that they’re not doing well by them by keeping them out. All these things go against what we now know about long Covid.”

A seminar hosted by the World Health Organization this week on long Covid in children heard “significant numbers” of children are affected worldwide with up to 140 symptoms identified. 

Professor of global health, University of Washington, Theo Vos said analysis of global studies shows a median duration of symptoms is seven months from the point of infection among children.  

“Even though these proportions are lower in kids (than adults), it still translates with the many infections which have occurred into 24 million cases in the years 2020 and 2021,” he said.

“A milder course of the initial infection can still lead to Long Covid, and indeed this is the vast majority of cases.” 

Doctors were urged to consider the possibility of long Covid when treating children who develop new symptoms.

Contact Long Covid Kids (Ireland) on Facebook or the UK home is online at www.longcovidkids.org

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