Long Covid: 'The public, the government and the HSE do not understand the scale of this issue'

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AN ADVOCACY GROUP for people suffering from symptoms of Long Covid is calling on the Government to urgently review how people with the condition are cared for.

Long Covid Advocacy Ireland (LCAI) says there are ‘huge inconsistencies’ in how people are being treated at the dedicated Long Covid clinics across the country, and a lack of knowledge among both GPs and consultants about the condition.

LCAI will call for an urgent care plan to be brought in at the Oireachtas Health Committee this morning. The group also wants specialised training for healthcare providers and a public awareness campaign on the condition.

There are currently six Long Covid clinics: Beaumont Hospital, St James’ Hospital and St Vincent’s Hospital in Dublin; University Hospital Galway; University Hospital Limerick and Cork University Hospital.

“What we are hearing is that patients are not receiving symptom management from clinics,” LCAI’s Sarah O’Connell told The Journal.

“There is no ‘silver bullet’ treatment for Long Covid yet. However, there’s a huge amount that can be done to help patients manage their symptoms and improve their quality of life.

“For example, if a patient has issues with sleep, you can prescribe melatonin. If a patient has pain issues, you could prescribe anti-inflammatories. None of this is controversial, but for some reason, almost all the patients we speak to have not had any medication prescribed by the Long Covid clinics they attend.”

Over 200 symptoms associated with Long Covid have been identified, the most common of which are fatigue, respiratory and cardiac symptoms, neurological symptoms, muscular and joint pain, and digestive symptoms.

Some people can experience symptoms lasting years, which can have an impact on everyday functioning.

Kate* was 14 years old when she got Covid in 2022. Her symptoms were typical at first, but she later developed Long Covid and was bedbound for five months. She now experiences very bad headaches, dizziness and pains in her joints regularly.

Her mother Mary* told The Journal that it has been “two extremely difficult years, especially for her”.

“She suffers from extreme fatigue, so even the smallest thing will cause really chronic fatigue. She missed her Junior Cert. She was able to attend some school in Transition Year, but this year, she is really struggling to attend school,” she said.

Mary has had to take time off work to care for Kate since she began experiencing symptoms. She said that in her experience, the care from GPs has not been effective due to a lack of expertise. There is also no dedicated Long Covid clinic for children in Ireland.

“We were bounced around from doctors. For the first year, she was told to rest and take paracetamol. At one stage, she was told to try eating fermented foods, none of which, we know now, was of any help for Long Covid,” she said.

“We’ve tried everything. She has been through acupuncture, reflexology, craniosacral therapy, she did ten consecutive days in a hyperbaric unit. There is nothing we haven’t tried, because in the absence of being given any guidance, you’d tried anything.”

Mary said Kate is missing out on her teenage years and is just “existing” at the moment. The whole family has been impacted, as they are afraid of her contracting Covid again.

“I’d be very reluctant to go places indoors with mass gatherings. I’m very conscious of it. We’ve a huge responsibility that she doesn’t get Covid again. Covid hasn’t left our family at all.”

She said she is hopeful that Kate’s condition will improve as research around the condition develops and informs care.

We don’t know what recovery looks like. There’s no timeline. For her, she’d say ‘If I knew I’d be better in a year’, but we don’t know.

Sarah O’Connell said patients have told LCAI that attending a Long Covid clinic often involves a 15-minute doctor appointment to rule out respiratory or cardiac issues before blood tests are conducted and the patient is then moved straight to support services such as occupational therapy, psychology, and physiotherapy.

These clinics are often not fully staffed, with patients often having to travel from more remote parts of the country to attend, she said.

“In some cases, patients who are living with severe, debilitating symptoms are waiting nine months for their first appointment with a Long Covid clinic, only to get 15 minutes with a doctor and be given no answers and told ‘just give it time’ – it’s just devastating to people.

Every week we’re receiving emails or calls from people who are desperate for help and aren’t getting it in the public system and are really losing hope.

In July last year, a review of interventions to improve the symptoms of Long Covid by the Health Information and Quality Authority (Hiqa) found that a clear pathway to treat the condition remains unknown.

Hiqa’s Michelle O’Neill said further research on the long-term safety and effectiveness of the interventions included in the review is required.

“Additionally, a better understanding of the pathophysiology of Long Covid would help researchers in designing more targeted interventions that address the complex nature of Long Covid,” she said.

While the impact of Long Covid ranges for people depending on the severity of their symptoms, O’Connell said LCAI has spoken to people who are about to lose their homes because they have been unable to work.

“People’s lives have been obliterated. Suddenly, you’re no longer able to care for your children. Suddenly you’re no longer able to work, you’ve no income and possibly your partner becomes your carer,” she said.

“We’re talking about a life-changing illness, and neither the public nor government nor the HSE are understanding the scale of this issue.”

In September 2022, Independent TD Denis Naughten told the Dáil that over 21,000 people could not work because of Long Covid symptoms.

The HSE introduced an interim model of care for the condition in June 2021. During a Dáil debate in November 2022, Minister of State for Health Mary Butler said it is “important that the HSE’s interim model of care is adapted to ensure it will be in line with the most up-to-date evidence”.

A model of care sets out how services are delivered for a particular condition by health services and best practice for patients. The interim model of care for Long Covid has yet to be updated.

It is not yet known how many people have Long Covid in Ireland. In 2022, a research paper published by the Oireachtas Library and Research Service estimated that there may be around 114,500 people in Ireland who have or will develop Long Covid.

Last year, the HSE commissioned a survey last year to measure the prevalence of the condition.

A HSE spokesperson told The Journal: “By asking people about their experience of Long Covid, the nature of their symptoms, the impact on their day to day life, and health service needs, we will have a better basis to planning further development of the HSE response to this condition.”

LCAI is calling for an awareness campaign to be launched to better inform the public about Long Covid.

“I think the problem is the public has an idea in their head as to what Long Covid is, and it isn’t what many people think it is. When you use words like ‘tired’, it doesn’t convey the symptoms of profound fatigue and weakness where people cannot move from their beds,” O’Connell said.

This fatigue, or post-exertional malaise (PEM), is a worsening of symptoms after any form of physical or mental activity.

LCAI is also calling for a review of social protection frameworks to alleviate the financial burden of Long Covid patients, and for Long Covid to be recognised as an occupational illness.

The group had also been calling for the Special Leave with Pay (SLWP) scheme for healthcare workers to be reintroduced. The scheme was due to end on 31 March.

However, Taoiseach Simon Harris yesterday confirmed to Social Democrats TD Róisín Shortall in the Dáil that the scheme is being extended for a further three months.

The Department of Health was contacted for comment, but did not respond by time of publication.

*Names have been changed to protect the child’s identity.