Una Mc Nicholas’ weekends aren’t spent hanging out with friends or lounging on her bed scrolling idly through Instagram.
The fifth-year student is on duty at home washing, dressing, and feeding her 27-year-old sister Elizabeth, who suffers from severe neuropathic pain.
Elizabeth has to be watched over 24 hours a day in case her body goes into shock.
Just last week, 17-year-old Una, from Lucan, Co Dublin, was on a training course learning how to administer life-saving hydrocortisone injections to her older sister.
“It’s OK. Yes, of course, you do miss out compared to your friends but you just have to get on with it,” she says. “If affects us all. Somebody needs to be there all the time.”
Una, who received a Young Carer of the Year award last year, was at Family Carers Ireland’s Share the Care campaign launch in Dublin yesterday. The campaign aims to make 2017 the year of the carer and will highlight the work of the country’s 200,000-plus family carers.
Una’s mum Brenda is Elizabeth’s full-time carer but she is run off her feet writing and responding to letters and making phonecalls trying to access treatment for her daughter. At the weekend, Una likes to give her mum a hand.
Elizabeth, who had a history of back pain, woke up one day eight years ago and could not move. X-rays showed she had scoliosis and another dislocation within her spine. Her health has now deteriorated to the point she cannot move.
Four attempted spinal fusion operations have failed and it has been discovered that cerebral fluid is leaking from her spine and brain.
Elizabeth has, among other ailments, also developed narcolepsy and catalepsy, which can lead to trances or seizures.
Doctors in Ireland say there is nothing more they can do for Elizabeth. Treatment at the Royal National Orthopaedic Hospital in Stanmore in London is her only hope.
The HSE will not fund it as her hospital consultant is no longer in the public sector which rules out action under the treatment abroad scheme. Due to the complexity of Elizabeth’s case, the family says no other public consultant is willing to take over her care.
Family Carers Ireland spokeswoman Catherine Cox said: “The reality is that family carers prop up the health system regardless of the cost to them — financially, socially, or in terms of their physical and mental health.”
“As part of Share the Care , we are calling on family carers to self-identify more as carers and seek support from wider family, the State and society, as often carers find it difficult to reach out and ask for help.”
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