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Thursday 19 April 2018

'Rachel denied right to die with dignity'

Heartbroken mother says isolation unit wasn't available before Rachel (15) died

Rachel Cronin, who died in August 2013, aged 15
Rachel Cronin, who died in August 2013, aged 15

Mark O'Regan and Jason Kennedy

The heartbroken parents of a young cystic fibrosis sufferer say their daughter was "denied her right to die with dignity" because an isolation unit wasn't available before her death.

Rachel Cronin from Bantry, Co Cork, was just 16 months old when she was diagnosed with the condition.

The "fun-loving" child spent the next 13 years in and out of Cork University Hospital, before succumbing to the disease in August 2013. She was just 15.

Speaking publicly for the first time, the family have called for "adequate facilities" to be provided for CF sufferers at the hospital.

Her parents - who took her home the week before she died - have spoken of the "distress" she felt while being treated in the hospital. They say facilities were "wholly inadequate" and this had serious consequences for the care of cystic fibrosis patients.

Rachel's mother, Mary, told how her daughter was forced to queue in a corridor outside public toilets, putting her at serious risk of infection.

And in the weeks before her death, the heat in the ward was "like an oven", forcing the parents to use a fan to try and keep Rachel's temperature stable.

"July 2013 was the hottest summer in years, and the children's ward didn't have air conditioning. The heat was simply unbearable," she said. "We placed three fans around her to try to keep her cool. She had oxygen, a feed tube, and a drain from her lung, so she was very hot and sweaty."

Toilet facilities were equally "shambolic", she added.

"We had to put her in a wheelchair to bring her to the public toilet in the corridor," said her father, John.

"There were no windows in the toilet, so we had to keep the door open, to let in some air.

"It was only seven-foot long, so the wheelchair could barely fit into such a tight space."

Speaking to the Irish Independent, her parents insist that a lack of isolation units in the hospital meant the risk of contagion was unacceptably high.

In the week before her death, they decided to bring their daughter home.

"The staff were extremely supportive, but we just wanted her to be with us. Our beautiful girl died in her own bed," John said. n"We're glad we did it - she was much more comfortable at home," Mary added.

A HSE spokesman said while it cannot comment on individual cases, a new cystic fibrosis unit at the hospital is due to be completed in the "near future".

Irish Independent

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