'It feels like we're being forced out of our own country due to the lack of care services'

Amira O’Toole Rauf with her mother Caroline O’Toole Rauf and private special needs assistant Wiktoria Haranczyk. Picture: Alf Harvey

A little girl left paralysed after a car crash is “disintegrating” due to HSE failings, her mother says.

The family is now so desperate for better care that they are considering leaving Ireland.

Amira O’Toole Rauf, aged five, requires 24-hour care after she was catastrophically injured in a car crash as a baby.

She suffered a severed spinal cord which has left her paralysed from the chest down.

A man in his 40s was killed when his car hit the vehicle being driven by Amira’s mother, Caroline O’Toole Rauf, who was also hospitalised following the crash which occurred just before 9am on November 6, 2018, in Portlaoise.

Ms O’Toole Rauf has since been fighting for better care for her daughter. 

Amira has not received a proper homecare package even though she needs 24/7 nursing.

Ms O’Toole Rauf pays up to €700 for private physiotherapy every month because she says that what is provided by the HSE is completely inadequate. 

Physiotherapy is needed to keep her daughter’s lungs functioning and to move her paralysed limbs.

Although speech and language therapy was professionally recommended for Amira, she received only one session through the HSE.

There is no public occupational therapist to help Amira in her home county of Carlow.

South East Community Healthcare confirmed that “unfortunately there is no OT currently on the Children’s Disability Network Team in Carlow". 

“The HSE is trying to recruit staff to children’s teams across South East Community Healthcare on an ongoing basis with rolling recruitment campaigns. Attempts to fill the posts via agency staff along with an international campaign have also unfortunately been unsuccessful," it said.

Amira, aged five, requires 24-hour care after she was catastrophically injured in a car crash as a baby. Picture: Alf Harvey

Last Friday, Amira was left with a broken wheelchair, which she relies on for movement and any sense of independence, her mother said.

Although a physiotherapist deemed the chair unsafe, no replacement was provided, she said.

A replacement chair has been ordered by the HSE, as Amira had outgrown her current one, but Ms O’Toole Rauf has not been given any indication of how long it may take to replace it. And without it, her daughter has no independence.

“It’s got to the point that I want to leave the country," said Ms O’Toole Rauf. "I have been looking at medical visas for other places. It feels like we are being forced out of our own country due to the lack of services. 

"I can’t just stay here and watch my little girl deteriorate. They’re leaving my daughter to disintegrate away.

“They’re stripping her of her independence and setting me up for the graveyard.” 

Amira’s needs are complex and her care is near constant. She was so critically ill in February when her lung collapsed that her mother “thought that we would lose her”.

She said that she has reported what she sees as the HSE’s mistreatment of her child to Tusla.

“If I was mistreating my child I would be reported to Tusla so why can’t Tusla intervene when my child’s health is deteriorating and the HSE doesn’t care?” 

Although individual healthcare staff have “gone above and beyond” for her daughter, adequate resources are not available to help her little girl.

“It’s horrendous what we’ve been through. The system is broken and no one is answering for it. It’s devastating what is happening in the system.” 

Amira at home in Ballinabranna, Co. Carlow. Picture: Alf Harvey

Amira came home from hospital in 2020. She had been hospitalised for two years after the crash in 2018.

She has an open stoma in her neck from where she had a tracheotomy for nine months to help her to breathe, which needed to be kept clean at all times. She was decannulated last May.

She gets 35 hours of home support and 24 hours of nursing care a week from the State. This nursing support relieves Ms O’Toole Rauf of two ‘night shifts’.

Although this gives Amira’s family some limited but welcome relief from 24/7 caring duties, Ms O’Toole Rauf must remain in the house at those times.

The HSE has failed to provide an adequate homecare package since Amira left hospital, she said.

Amira requires 24-hour care. She needs to be turned once every hour to prevent bed sores at night and infections of her very delicate skin. She also requires nebulising throughout the night and sometimes she has to be woken to have physiotherapy to help her lungs to function.

For five nights of the week, Ms O’Toole Rauf sits by her daughter’s bedside all night, filling in medical paperwork from the day and cleaning in between nebulisers, turning her daughter in bed, and giving her physio sessions. 

At 5am, Ms O’Toole Rauf then draws her daughter’s medications, empties and flushes her daughter’s bowel, puts on her splints, nebulises her, gives her physio, and gets her dressed — all before breakfast.

“How long do they expect me to keep it together?

This is not home anymore, it’s a workplace. 

"The sitting room is now my daughter’s bedroom and we have no family room to relax together in.” 

Amira was supposed to have a nurse in school but one year later she still does not have one.

Ms O’Toole Rauf worries about her mental health. She has had no psychological support and neither has her family.

“Every day she tells me, ‘I’ll be a ballerina when I grow up, I’ll get dolly legs and be a ballerina'. Her friend had a prosthetic leg so she thinks she can too. Where’s the psychologist for her to help her through this?" 

Ms O’Toole Rauf had to retire from her work with the HSE after the devastating car crash that changed their lives forever.

“I worked for 23 years as a multitask attendant at Naas Hospital.

“How can I pay privately for treatment when I had to quit work to look after my daughter? My only income is invalidity payment for my own injuries and half a carer's allowance.

“I’m a doctor, a nurse, a care assistant, a physio, an OT, a dietician. Lastly, I’m a mother and that’s the first thing I should be.

“Why are the services so poor? How many children have to die before pen pushers making the decisions wake up to what’s actually going on around them?” 

The HSE was contacted for comment.