FCI: Carers not 'being seen and supported'

Brenda O’Connell, from Charleville in Cork, is a full-time carer for her son Fionn, who has NACC1, a rare genetic mutational condition.

Family carers are not being seen or supported during the Covid-19 crisis and should be recognised as a vulnerable group and prioritised for testing and other supports.

That’s according to Family Carers Ireland, which has written an open letter to the government seeking greater support for the 355,000 carers across the country during the public health emergency.

Catherine Cox, who heads up communications at the charity, said carers should be given priority for Covid-19 testing, have access to personal protective equipment or PPE, and be entitled to the Pandemic Unemployment Payment where someone gives up part-time employment to care for a loved one.

Contingency plans, she said, are also needed to provide support and care where the virus is detected in a household and family carers can no longer care for loved ones.

The pandemic, she said, has had a “particularly acute” psychological impact on all family carers and has compounded challenges for an estimated 80,000 carers who were struggling with financial difficulty, social isolation and ill-health before the outbreak. “The pandemic has made an already difficult situation much worse,” she said.

“Our biggest fear now is that family homes will become the next ‘crisis point’ with cases already emerging this week of family carers being diagnosed with the virus and many more waiting on tests and verification. Surely we should be doing our utmost to protect family carers and try to prevent this virus entering their homes?”

For full-time carer, Brenda O’Connell from Charleville, Co Cork, the viral outbreak has made life tougher.

Brenda and her five year-old son, Fionn, who has a rare and life-limiting condition, are cocooning at home as they both fall into the vulnerable category for contracting Covid-19. Brenda has systemic lupus, meaning she is immunosuppressed, and Fionn is the only known person in Europe to be diagnosed with NACC1, a rare genetic condition.

Fionn’s condition requires round-the-clock care, seven days a week, and since the Covid-19 outbreak he has stopped attending the nearby Holy Family School.

Frustrated by the lack of support for carers, Brenda said it was an ongoing struggle to get the recognition and support they needed.

“Family carers are struggling all of the time, and now it’s even worse,” Brenda said, adding that the closure of schools and services left many carers more isolated and without respite.

“They’re ignoring us all the time. Any support that family carers get they have to fight tooth and nail for it. We have to go on our hands and knees and beg for every single thing we get and anything we do get was hard fought,” she added.

Access to PPE, she said, was an issue as the family were only provided with gloves and had to rely on donations from Family Carers Ireland, the local Christian Brothers School, and a nursing agency for face shields, masks, aprons, and hand sanitiser, which are being “rationed” in the home.

“We are not being seen and we are not being supported enough. We are very isolated. I can’t even go to the shops to get some groceries at the moment. We are lucky as a family to have a great support network around us but not everyone is as lucky as that,” Brenda said.

Family Carers Ireland said donations from Irish Life and Tesco Ireland have enabled it to distribute some PPE to carers in crisis but that supplies are limited.

Carers requiring support or PPE can contact one of the charity’s 16 centres or call the charity helpline on Freephone 1800 240724.