‘A Total Horror Story’ – A Cork family shares their heartbreaking search for access to care
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‘A Total Horror Story’ – A Cork family shares their heartbreaking search for access to care

A Cork woman whose sister has multiple disabilities and requires care has described their situation as a “total horror story”.

Marie claims that her sister Sarah (not her real name) was diagnosed with a severe intellectual disability at a young age and now, in her 30s, suffers from chronic seizures and behavioral problems.

Sarah’s mother, a widow, cared for her needs for over two decades, at the expense of having no social life, until work became too difficult.

The mother became ill herself, developing an autoimmune disease, and Sara’s needs became more and more demanding.

ON Live lunchMarie said they soon began looking for care elsewhere.

“Many times, social workers would come to the home, do an assessment, write big, long essays about how inappropriate it was, but no further action was taken,” she said.

“There was nothing in the system to indicate that my mother was no longer suitable for care and we needed to find a solution; there is no planning in the system.

“(Sarah) was at a day care center that did provide day care, but there were cases where she refused to attend and that was it, so it wasn’t an option.

“As for respite, she went once, the next time she refused, and then she was never offered it again and that was the end of respite.”

Marie stated that it was a “total horror story” for her family.

“The system is very opaque when it comes to people who think they will benefit from care, there is no clear mechanism for accessing it,” she said.

“GPs can recognize the need for care, as can social workers and family members calling for it, but there is no process or button to press.

“I find it extraordinary that, nationally, my sister, who was diagnosed with the disease when she was three, has not been able to live independently since then.”

“This Isn’t the Right Place”

With no other option, Sarah now lives in the hospital full time.

“My sister’s current location, where she has been for the last 12 months as she requires 24/7 care, is Cork University Hospital,” Marie said.

“This is currently the only place identified where she can be taken care of and her needs met.

“He lives in the intensive care unit; it is not the right place, not in any way shape or form, but nevertheless the nursing care and staffing levels are very good.”

Care needed

Marie said something needed to change.

“Carers in situations like this need good people in Ireland to advocate for them.

“These are people who don’t have time to defend themselves; they can’t leave their homes.”

She also appealed for society to vote only for politicians and parties that pursue a “strong policy of change in this area.”

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Main photo: Sarah in a hospital bed. Photo: Supplied