A CORK mother has spoken about her experience of being a full-time carer for her six-year-old son who has a life-limiting condition and the constant struggle to access supports the family so desperately need.

Carer of the Year 2018, Brenda O’Connell Barry from Charleville, provides round-the-clock care to her son Fionn who suffers from NACC1, a rare genetic mutational condition.

Fionn’s condition is so rare that he is the only person in Europe who has been diagnosed with the condition.

Speaking ahead of Tuesday’s Budget 2021 announcement, Brenda said it is vital that the Government step up and provide family carers with more support.

“We just want to be seen and valued for what we do and appreciated for what we do because we work so hard day and night and what we get for it is pittance.

“I get only €66 a week Carer’s Allowance because my husband has a job.

“We’re over the threshold for grants to help us.

“At the moment, we do an awful lot of fundraising,  it’s so tiring and draining and we find it humiliating really, being honest, but we have to do it to provide what Fionn needs,” she told  The Echo. 

With long waiting lists to access much-needed equipment for Fionn, the family has been forced to finance items themselves, with the help of people in the community.

“We have been blessed with the community and the support we’ve got. We were able to buy a wheelchair for Fionn as a result of that support.

“We had to buy a wheelchair because the waiting list is 12-18 months.

“The person before Fionn on the list still hasn’t got her wheelchair and we have his a year and three months now,” Brenda explained.

For the past 12 months, Brenda and her husband Trevor have been fighting to get just four more home support hours, which has been an arduous battle.

“His consultant and Fionn’s team and everyone are advocating for us.

“What we’re made to do as carers, on top of everything else, the fighting and the emailing and reaching out, contacting time and time again and getting no answers… It beggars belief really what carers have to go through,” Brenda said.

“We have nurses from the HSE at night some nights of the week and we’re very grateful for them, but we’re begging for four hours more for 12 months.” 

As Fionn suffers from extreme cerebral agitation, he can go up to nine days and nights without sleep and the impact of this has taken its toll on Brenda.

“At the moment, we have no help day or night at the weekend, so this weekend, as an example, I got five hours sleep from Saturday morning until Monday night. We just need four more hours at the weekend just to get me through the weekend,” she said.

“My husband has a job, he’s an electrician in a factory in Shannon and he drives an hour in and out to work.

“He needs his sleep so that he can get up and go to work.

“It’s me that the burden of care is on to mind Fionn and I love minding him and live for his smile, but things are very difficult.

“Where other kids might go to sleep at night, I don’t get that reprieve,” Brenda continued.

At the moment, the family is trying to “scrimp and save” to fund a ceiling track hoist to lift Fionn – a piece of equipment expected to cost in the region of €9,000.

“There’s no regard taken into the outlay that we have for the private therapies and the equipment that we’re not given any help with,” Brenda said.

She paid tribute to a local charity in Charleville, St Joseph’s Foundation, who Brenda said has been a fantastic support to the family, but notes that organisations like this are underfunded and struggling themselves.

“They are so fantastic and good to Fionn but there’s a limit to what they can provide for Fionn and they need so much more funding to provide families with facilities and services,” she said.

Ahead of the budget, Family Carers Ireland, a national charity supporting family carers across the country who care for loved ones such as children or adults with physical or intellectual disabilities, frail older people, the terminally ill or those suffering from chronic illnesses or addiction, have set out a 17 point proposal outlining what they want to see delivered in Budget 2021.

This includes a call for the phased restoration of the Carer’s Allowance income disregard to ensure that those on an average industrial income can qualify.

Currently, only households with a gross total income of less than €37,500 per year qualify for a full Carer's Allowance.

The organisation is also calling for the Carer’s Support Grant to be increased from €1,700 to €2,000 as for some full time carers of people who are medically assessed as in need of full time care, the grant is the only financial recognition of the care they provide.

“We feel that that’s a small gesture that could be done for family carers given the contribution that they give to the community and the national economy,” Peter Cox, Family Carers support manager for Cork and Kerry said commenting on this.

Mr Cox said at present, particularly given the Covid-19 pandemic, that a lot of carers are struggling to make ends meet.

“Presently, quite a lot of carers are struggling. The lockdown has really highlighted that.

“For a lot of carers, they would say that they have been in lockdown for a number of years throughout their caring role and that people have forgotten about them, but the last six months, in particular, have been even more difficult with the reduction of services, with the reduction of supports in the community and things like that,” he said.

Mr Cox said that the HSE Winter Plan, published last month, which included the announcement of 4.7 million additional home support hours above existing levels to be provided by next April, was welcomed but questioned, given the wider context and the impact of Covid-19, if it goes far enough.

He added that it is vital for Budget 2021 that the Government demonstrates its commitment to family carers and honours the commitments made to carers set out in the Programme for Government.

“It’s about recognising the work that carers do and recognising the costs associated with that,” he said.

To view Family Carers Ireland full budget proposal or to find out more about the organisation, visit their website, www.familycarers.ie