They have completely forgotten about us...
Sufferers tell of fight for treatment Fears as specialist site at risk of closure
A PAEDIATRIC nurse who caught coronavirus on the frontline said she is “terrified” for her future as the Long Covid clinic treating her faces closure.
Niamh Hughes, 37, has been out of work since March 2021 and suffers with brain fog, fatigue and headaches since she got the virus in late 2020.
She is one of almost 1,000 patients who attend the Long Covid clinic set up at the Mater Hospital in Dublin in 2020 – which may be forced to close next month.
Many reacted angrily this week after it emerged the HSE is funding seven hospital-based clinics around the country but the Mater is not included.
Niamh, from Drogheda, Co Louth, told the Irish Sunday Mirror: “I am horrified at the thoughts of this clinic closing.
“I am a nurse in Temple Street Hospital and caught Covid while working on the frontline as an emergency department nurse.
“I still have significant cognitive issues. I find it very hard to follow a conversation if there are more than two or three people in the room.
“If there is background noise – TV, washing machine – I can’t even concentrate on just one person.
“I have periods during conversations that I just can’t find the words I’m looking for, it’s like my brain just goes completely blank.
“I also have real problems with my memory.
“If I don’t have a to-do list for the day, I won’t get anything done.
“I have often gone to the shops and completely forgotten what I’d gone for or even why I’d left the house.”
Niamh said she does not know when she will be able to return to her job.
She revealed the Mater’s Prof Jack Lambert prescribed medication to treat her cognitive issues.
She added: “It is slowly helping me, but I am terrified of what happens if the clinic goes.”
Miriam Cullen, from Walkinstown in Dublin, previously told this newspaper how Long Covid had “robbed” her of her life and left her almost housebound.
The 62-year-old, who hasn’t been able to work for more than two years, needs a ventilator to help her breathe and has been diagnosed with a brain disorder.
She said: “Two and a half years into the pandemic and thousands of adults battling Long Covid in
Ireland still have no access to multi-disciplinary care.
“Why are members of Long Covid Ireland [patient support group] who have been chronically ill for over two years still having to campaign for clinics nationwide?”
Miriam has started an online petition which has more than 3,000 signatures.
She also pointed out that NPHET’S briefing paper projected a €6.6million cost to care for Long Covid, yet only a third of this was allocated for 2022.
Just 20 staff have been recruited across 10 hospitals to work in Long Covid and postacute Covid clinics, the HSE said earlier this week.
Estimates based on data from the Health Protection Surveillance Centre put the number of adults here with Long Covid at 336,000.
The HSE acknowledged the recruitment process “takes time” but was under way, and that
funding for 2023 had not yet been allocated or determined.
Infectious diseases consultant Jack Lambert said he had been leading the Mater clinic free of charge but would have to
“quit” in the absence of
funding. He warned: “I don’t want to quit on this but I am going to quit. The hospital does need to get funded for services they are providing.
“I am doing this as a freebie... but there comes a point where it is ludicrous.”
Fainche Deeney, 26, has been attending the Long Covid clinic at the Mater since October 2020, six months after being diagnosed with Covid-19.
She said: “I’ve had to leave Dublin, where I was renting for eight years, to move back in with my parents in Co Monaghan as I have been unable to afford the rent on the illness benefit.
“My symptoms are brain fog which makes daily tasks impossible, extreme fatigue, migraines, gastro issues, and the complete and utter devastation of my life.
“I was a fit and healthy 24-year-old with no underlying conditions.
“I’m now 26 and have been deemed as ‘fully disabled’ by my Long Covid symptoms.
“I need Dr Lambert’s clinic to remain open – and it’s not just me. He has thousands of patients in the same boat.
“So many people are suffering in silence and they have completely forgotten about us.”
Sinead Kirrane, 32, has had to move from Dublin to her native Galway to be cared for by her parents. She has experienced cognitive impairments, numbness in her arms and legs and chronic fatigue.
She said: “I’ve been on a Long Covid waiting list since April and still haven’t been called for an appointment.
“Meanwhile I’ve been referred to and seen by Dr Lambert in the space of about six weeks.
“He’s the first to have proposed solutions instead of telling me it was a waiting game.
“We need more people like him and the last thing we need is to lose people like him.” Laura Merrick, 39, from Co Kildare has been attending the Mater clinic for 18 months.
She suffers migraines, joint pains, sinus issues, chronic fatigue, memory loss, high heart rate, high blood pressure, nerve pain, panic attacks and PTSD. She said: “To change to another clinic would be a chore figuring how to get there.
“I have to travel from Kildare to Dublin and more often than not I have to get a family member to bring me.”
I need Dr Lambert’s clinic to remain open