Services for those with long Covid are a “pot luck pick and mix” with many clinics understaffed and not fully operational, the Oireachtas health committee heard on Wednesday.
Long Covid Advocacy Ireland (LCAI), a group representing those with the condition, said an interim model of care developed for sufferers is now 31 months old and has not been updated in that time.
“The centre of excellence, ‘one-stop shop’ planned for long Covid patients does not exist in any hospital; instead it has become a pot luck pick and mix of services with no apparently specialised training,” politicians were told.
The group told the committee there are people who developed long Covid, which it describes as a “complex multi-organ and multi-system disease characterised by widespread inflammation and immune system dysfunction”, whose lives have been “utterly devastated” and who have had “no recovery”.
An estimated 350,000 people in Ireland are affected by long Covid, the group said, referring to World Health Organisation (WHO) research which found between 10 and 20 per cent of cases of the virus result in long Covid.
The group added this is likely to be an underestimate as it took the conservative estimate of 10 per cent of total reported cases, as well as the likely under-reporting of positive Covid cases in recent years.
LCAI is seeking support from the health committee on what it described as a “truly dire situation”, emphasising issues in service availability, education, finances, mitigations and public awareness. The group said its members have been left with no quality of life, in some instances bedridden, unable to eat or communicate.
It criticised training materials provided by the Irish College of General Practitioners, which it says amount to a two-page spread in its magazine for members. It said the materials are “unacceptable and insulting”.
“Patients expect and deserve so much more than this. This is an illness that overnight has entirely disabled previously healthy people with busy professional and family lives,” the committee was told.
Sarah O’Connell, co-founder of the group, said they seem to see “a lot of patients from 2020″ but also continue to see new patients with every variant.
“Research still needs to be done to determine whether newer variants are less likely to result in long Covid,” she added.
On Tuesday, the Department of Health announced the special scheme of paid leave for employees suffering from long-Covid has been temporarily extended for three months.
Ms O’Connell said while health workers were “relieved” by the extension, it was “imperative” that a longer-term plan is agreed. “Short-term extension after short-term extension means they’re in limbo. It’s torture for people,” she added.
Dr Siobhán Ní Bhriain, the HSE’s national clinical director on integrated care, was also set to address the committee. She said the HSE has a funded model of care that has been reviewed by the Health Information and Quality Authority, finding it is “broadly in line” with other models internationally.
There are six long Covid clinics operating and receiving patients, but that capacity to receive patients is based on staffing at each location.
Dr Ni Bhriain’s contribution said there is “limited evidence on how to treat long Covid” and that there is no evidence-based medication licensed to treat the condition.
