'You’re grieving for your former self and you wonder if you’ll ever get back to how you were'
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Sufferers of long covid have spoken of their frustration with the "unacceptable and insulting" level of support offered by the Irish health service for the condition.
Sarah O’Connell, speaking on behalf of Long Covid Advocacy Ireland (LCAI), told the Oireachtas Health Committee of the inadequacy of Ireland’s six long covid clinics, many of which “remain understaffed and therefore not fully operational”. She said the Limerick clinic has no consultant in place and opens only once a week, in which time it will see a maximum of two or three patients.
LCAI estimates that as many as 350,000 Irish people have either experienced or are living with long covid.
Ms O’Connell shared numerous stories of those living with the condition.
One woman in her 40s, Ann, was hospitalised with covid-related respiratory issues in April 2022 and remained hospitalised for six months.
Her consultant recommended that the condition with which she was diagnosed, postural orthostatic tachycardia syndrome, could best be treated by movement.
She eventually lost 32 pounds and left hospital “more unwell than she arrived”, Ms O’Connell said.
“No clinician suggested the possibility of long covid, even though her symptoms were clearly consistent with that diagnosis. The exercises and movement were clearly making Ann worse not better, but the team persisted."
Ann was finally diagnosed with long covid in late March of this year.
“It took two years, despite the severity of her illness,” she said.
She noted that the interim model of care for long covid is now 31 months old “and has had zero updates”.
Ms O’Connell also spoke of the paucity of support for children living with long covid.
She relayed the story of Kate, who contracted covid aged 14 in February 2022 at a school disco. She now spends “50% of her daytime hours in bed and struggles to get up and down the stairs”.
Kate did not sit her Junior Cert, and is not expected to sit her Leaving Cert either, Ms O’Connell said.
“Before her infection, Kate was fit and healthy,” she said.
“For the first full year of her illness, Kate received no medical care.”
Ms O’Connell’s colleague Imelda O’Donovan spoke of the pain of living with long covid.
“You’re grieving for your former self and you wonder if you’ll ever get back to how you were before."
All of the speakers present noted that the exertion of appearing at the committee would likely leave them exhausted for days.
“People with long covid want to be working and living normal lives,” Ms O’Connell said, adding that being reminded four years after the beginning of the pandemic “that there are no evidence-based treatments for long covid is unacceptable and insulting”.
The HSE’s national clinical director for integrated care Dr Siobhan Ni Bhriain told the committee that the interim model of care for long covid launched in 2021 “is broadly in line with other models internationally”.
Dr Brian Kent, a respiratory consultant at St James’s Hospital in Dublin, while acknowledging the prevalence of long covid among patients, said that doctors’ ability to distinguish who will recover from the condition and who will suffer long-term effects “is not great”.